tag:blogger.com,1999:blog-88165897993150040182024-03-05T05:16:40.130-08:00Hobby Horse: Adventures of the Perpetual NewbieThe continuing bumpy, lumpy saga of a hobbyist equestrian whose life was turned upside-down and inside-out by rare diagnoses and ultimately, brain surgery. Mmmm...braaaaains. Ooh, and horsies!LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.comBlogger59125tag:blogger.com,1999:blog-8816589799315004018.post-30631929321145144002015-10-12T19:52:00.000-07:002015-10-12T20:02:54.255-07:00Laura's introduction to yoga, stream-of-consciousness style<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;">Start in the what pose?</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;">Chumbawumbuh-huh?
Cobra dog thing? How the hell do I...well, this will have to do.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;">I
don't bend that way.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
Dammit, I don't bend that way either.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
Warrior who? Reverse what?</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
DAMMIT, my upper body is in crap condition. Time to admit I can't hold this and
wait this pose out.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
I used to be able to do this.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<b><span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;">DAMMIT</span></b><span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;">,
my balance is really screwed up. What the...? <i>Fuck,</i> is it
screwed up.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;">Face down toward the
floor...got it. I'm just going to be here and cry a little.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
Okay, getting up.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
What the <i>hell </i>happened to my body?</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
Hey, I know this one! That's in my physical therapy arsenal.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
Wait, what did she say? What the hell is that?</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
I'm sweating. I've hardly moved--how am I sweating??</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
Hey, another physical therapy one!</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<b><span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
DAMMIT </span></b><span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;">my shoulder is noisy.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
OW. Guess I should shift.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
What the hell? I used to be able to do <i>this</i> too, like it was
nothing. Definitely a something now.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
What the <i>HELL </i>has happened to my body?</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
Face down on the floor for this stretch...okay, a few more tears to mix with
the sweat, why not?</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
Not feeling sorry for myself, nope; modify and move on.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
Oh, it's the chumbawumbuh-huh cobra dog thing again. </span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
Oh, looks like my hips are supposed to stay <span style="background: white;">up.
</span>Whatever, my hips are going to have to be down.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
<b><i>DAMMIT </i></b>my arms suck.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
Lying still and flat...okay, I got <i>this </i>one.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
It's over?</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #141823; font-family: "Helvetica","sans-serif"; font-size: 10.5pt;"><br />
Man...I can't wait to come back next time.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com1tag:blogger.com,1999:blog-8816589799315004018.post-21424888980240900972015-09-28T21:03:00.000-07:002015-09-29T11:37:37.388-07:00I've got thick skin and an elastic heart<div style="background-color: transparent; color: #141823; line-height: 17.94px; white-space: pre-wrap;">
</div>
<div style="text-align: center;">
<i style="background-color: transparent;"><span style="font-family: "inherit","serif"; font-size: 12.0pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">You did not break me</span></i></div>
<div style="text-align: center;">
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt;">
<i><span style="font-family: "inherit","serif"; font-size: 12.0pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">I'm still fighting for peace <o:p></o:p></span></i></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt;">
<i><span style="font-family: "inherit","serif"; font-size: 12.0pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Well, I've got thick skin and an
elastic heart<o:p></o:p></span></i></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;">The heat wave feels endless. I got itchy and impatient the other
day and determined I'd go to the barn--not for anything fancy, just to BE
there. Thoroughly clean stalls. Put down new shavings. Put a big metal feed tub in for the goats. Let Firefly out to eat the bits of grass inspired to pop up after
last week's freak storm. Give everybody treats in the form of half an overripe
watermelon and bruised apples cleaned out of the fridge. </span><span style="color: #141823; font-family: 'Times New Roman', serif;"><o:p></o:p></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;"><br /></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;">98 degrees outside notwithstanding, I said fuck it. I gulped
large amounts of ice water, put on a wide-brimmed hat, waited for the shadows
to get long in the day. I dug out a favorite item from my hot horse show
days--a neck wrap filled with absorbent crystals that I soaked in ice
water--and put it to use. </span><span style="color: #141823; font-family: 'Times New Roman', serif;"><o:p></o:p></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;"><br /></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;">I went. I did all those small, but significant to me, things I
had planned and hoped to do. I was careful, spending no more than an hour. I
felt recharged, victorious, refilled. My soul lifted high again.</span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<br /></div>
<div align="center" class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt;">
<i><span style="color: #141823; font-family: inherit, serif;">I'm
like a rubber band until you pull too hard</span></i><span style="color: #141823; font-family: 'Times New Roman', serif;"><o:p></o:p></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: .0001pt; margin-bottom: 0in; mso-line-height-alt: 13.45pt;">
<br /></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;">I came home triumphant, hungry, hot, sweaty. I showered,
afterward feeling refreshed but tired. And then the creeping sensations told me
in the humming muscles and pounding heart that I had overheated. My head,
bones, skin throbbed, though more in exhaustion than pain. For more than seven
hours after getting home, I still felt these effects of the heat. When my
husband hugged me, he commented my body felt unusually warm, and when I went to
bed, what sleep I could manage stumbled choppily through the lingering effects
of the heat on my ridiculously heat intolerant body.</span><span style="color: #141823; font-family: 'Times New Roman', serif;"><o:p></o:p></span><br />
<span style="color: #141823; font-family: inherit, serif;"><br /></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;">So triumphant as I felt that I got to go do what my soul was so
hungry for, my body paid the price. And then I was just <i>pissed</i> about the
unfairness of it all, as though I'm owed fairness. </span><span style="color: #141823; font-family: 'Times New Roman', serif;"><o:p></o:p></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<br /></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;">The lyrics to Sia's "Elastic Heart" have curiously echoed in my
more-spacious skull in the last few weeks, though I knew only a few lines.
While trying to cool off on the couch, I watched the video and broke down, the
tears pouring as though a dam had burst. I went to my husband's arms and started
sobbing, the hard, messy kind of tears that burn the eyes, fill the sinuses, and tighten the throat. </span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;"><br /></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;">He gently reminded me that I <i>can </i>go to the barn; how a year
ago it was not possible. He had taken the boys to an air show that day (I
stayed home--not really my thing, plus all day loud and hot and lots of walking equals no thanks) and had driven up the coast with them. During that drive, my husband and Boy 1 (Boy 2 was asleep) recalled the last time they'd made that drive--they'd
taken me to Santa Monica for my CINE MRI. That test was excruciating for me and
was a defining moment in this process; from that moment on, I was convinced I
had something wrong at the back of my head. The procedure triggered a horrific
headache and, unable to shift away from pressure while the test was run, my
eyes went dramatically bloodshot. Husband and Boy 1 were recalling how awful that
headache was, how it lingered for days after, and how wonderful it was that those headaches were gone. Other
problems remain, sure, but those were gone, and Boy 1 and 2 got their mom back, and my husband, his wife. </span><span style="color: #141823; font-family: 'Times New Roman', serif;"><o:p></o:p></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;"><br /></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;">I agreed, it was, <i>is,</i> wonderful, but lamented now I'm here, confused about
my life, my body, and how differently it behaves. I waved my hand at all the
horse show ribbons in that office, saying I did some shows wearing a wool huntcoat
in 100+ degree weather--how can it be that now just doing an hour of barn chores, using
all the precautions I used in my horse show days, overheats me? I miss this, I
said, pointing at the ribbons, I miss riding my horse. I miss barn life. It has been my lifelong dream to own horse property, and now I don't know
if I'd be able to tend to it. </span><span style="color: #141823; font-family: 'Times New Roman', serif;"><o:p></o:p></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;"><br /></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;">As the tears calmed a bit and I continued trying to explain my
emotional and mental battle, my husband in his typical sympathetic, gently concise way summarized my
struggle: "You're well enough to miss what you've been missing." </span><span style="color: #141823; font-family: 'Times New Roman', serif;"><o:p></o:p></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;"><br /></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;">That's it. That <i>is</i> it. That's <b><i>it.</i></b> </span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;"><br /></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;">The tears poured again.</span><span style="color: #141823; font-family: "Times New Roman","serif"; font-size: 13.5pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;"><br /></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;">I sometimes feel I must keep a Happily Ever After front. I've had my surgery and now I ride my white horse off into the sunset as the credits roll. But admittedly, some days it is a struggle of feeling lost and purposeless, angry and impatient, and aggravated that what <b>was </b>cannot be what now <b>is</b>, and I can't <i>make</i> it go back. </span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;"><br /></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823;">The difference is I now have the luxury of grieving my old life. I have a mind sharpened and eyes brightened by increased CSF flow, but a body still plagued with the damage done to a long-compressed brain stem and a lifelong connective tissue disorder. My mental energy has bounced back to where I <i>want</i> to go out and DO ALL THE THINGS! I once could do, and while much more is available to me, the truth is restrictions remain. And that pisses me off.</span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823;"><br /></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823;">I'm well enough to miss what I've been missing.</span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823;"><br /></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823;">My life now is about exploring new routines, new procedures, new expectations, new realizations, new understandings, new boundaries, new limits. Maddeningly amorphous as it sometimes is, I'm discovering them while I go about <i>living </i>this glorious, frustrating life, knowing nothing is owed and understanding everything can change. Now and then, the grief of losing what Was overtakes me, and <i>that is okay</i>.</span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823;"><br /></span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823;">Because I'm also well enough to </span><i style="color: #141823;">live </i><span style="color: #141823;">my life. </span></div>
<div class="MsoNormal" style="background: transparent; margin-bottom: 0.0001pt; text-align: left;">
<span style="color: #141823; font-family: inherit, serif;"><br /></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt;">
<i><span style="font-family: "inherit","serif"; font-size: 12.0pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">And I know that I can survive</span></i><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt;">
<i><span style="font-family: "inherit","serif"; font-size: 12.0pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">I walked through fire to save my life</span></i><span style="font-family: "inherit","serif"; font-size: 12.0pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt;">
<i><span style="font-family: "inherit","serif"; font-size: 12.0pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">And I want it, I want my life so bad<o:p></o:p></span></i></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt;">
<i><span style="font-family: "inherit","serif"; font-size: 12.0pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">And I'm doing everything I can<o:p></o:p></span></i></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt;">
<i><span style="font-family: "inherit","serif"; font-size: 12.0pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";"><br /></span></i></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/KWZGAExj-es/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/KWZGAExj-es?feature=player_embedded" width="320"></iframe></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-size: x-small;"><i>An internal battle with one's inner self, expressed externally.</i></span></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div align="center" class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
</div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-19842910063216528982015-08-01T16:06:00.002-07:002015-08-07T20:54:38.544-07:00An epiphany or two, 30 years in the making: 6mo post-op follow up with Dr. Braaaains...erm, Bolognese<div class="separator" style="clear: both; text-align: left;">
I usually try to come up with some sort of poetic or creative intro, but I'm just going to dive right in. The water is deep and wide, so best get swimmin'.</div>
<div>
<br /></div>
<div>
I had my six month post-op follow up with Dr. Bolognese yesterday morning via Skype. This was more or less about comparing cervical MRIs and checking in on symptoms; clearly he is not examining me (that's what my PCP did at my follow up in person). The appointment was elucidating, to say the least. No, that's too much the "least," it was a life-elucidating epiphany for 30 years of bafflement. I know I can be prone to hyperbole, but I assure this is not the case. But patience, kiddos; I'll get to that in moment. Why? Because BRAINS.</div>
<div>
<br /></div>
<div>
After going over my current symptoms (still no headache, still no tremors, still greatly improved energy and motivation), Dr. B went over my before and after images, which is always fun. Checkitout checkitout!</div>
<div>
<br /></div>
<div>
Before: note the cerebellar tonsils dipping down below the foramen magnum, pressing into the brainstem and cutting off the flow of cerebral spinal fluid. OR...note the triangular-shaped tip of the dark grey thingy pushing in to the right of the top of the long dark-grey cord thingy, and how the white stuff seen on either side of the cord thingy can't really get around that triangular-shaped thingy.</div>
<div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFpNA3w3wFNUYmd_ec_PYbGx2-C3MKCHbZOX6we9qFW7IRTO9JPRXJm9Ev_PhVGCxRI_QN4q2IPO549xxa7vQqcwJJYeHDjrczXYFEzQlViFp_uXn3OnQo_iSq0SBYvDxldCe3hF3kNmg/s1600/Cervical+MRI+2+enchanced.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFpNA3w3wFNUYmd_ec_PYbGx2-C3MKCHbZOX6we9qFW7IRTO9JPRXJm9Ev_PhVGCxRI_QN4q2IPO549xxa7vQqcwJJYeHDjrczXYFEzQlViFp_uXn3OnQo_iSq0SBYvDxldCe3hF3kNmg/s400/Cervical+MRI+2+enchanced.jpg" width="397" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>New and improved labeled edition! </i><i style="font-size: 12.8000001907349px;">The foramen magnum is the opening of the skull, labeled with the orange dotted line. It's easy to miss; I had <b>doctors</b> misidentify it in front of me more than twice. Note how my cerebellar tonsils dipped below it (when they should stop a centimeter above it), cut off the flow of CSF, and were pressing into the brain stem.</i></td></tr>
</tbody></table>
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
And now, the after pic. Note how the tonsils no longer dip below the foramen magnum, the brainstem is no longer compressed, and CSF flow is also greatly improved. Also note, if you can, how the posterior/back edge of the my skull doesn't reach as far as before. It's that light grey line to the right of the back of the brain, resting at about a 45 degree angle. That's the part of my skull that was removed. (Ground away, really.)<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAV2wHEKL_JI5c_cz5XwdTl1_Agufg5AEOwxs3eK6h8hgCyy8f1jJeprQOZmZEWhTaXRyjWl5xL9v2HDf7SdHk1AiEMiX-IdK9DxymNF3HS8A0hAOjZUZq2eN6qZEj8JhEVLZ8DbqlvYs/s1600/Post+op+cervical+MRI+3.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAV2wHEKL_JI5c_cz5XwdTl1_Agufg5AEOwxs3eK6h8hgCyy8f1jJeprQOZmZEWhTaXRyjWl5xL9v2HDf7SdHk1AiEMiX-IdK9DxymNF3HS8A0hAOjZUZq2eN6qZEj8JhEVLZ8DbqlvYs/s400/Post+op+cervical+MRI+3.JPG" width="398" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>The brainstem needs room to <b>PARTY!</b></i></td></tr>
</tbody></table>
Dr. B surprised me in his word choice when describing my surgery--he said this decompression with cerebellar tonsillectomy was "the most aggressive" surgical treatment for Chiari. Apparently going in and removing the herniated tonsils, rather than removing a big chunk of skull (craniotomy) and pasting a section of cow heart (duraplasty, and seriously, that's what it is) is less aggressive. I suppose that makes sense, as Dr. B's approach took an extremely delicate (and experienced) hand--going in through a smaller incision and gingerly cauterizing away the offending cerebellar tonsils put him a centimeter away from killing me at any time, and even closer to causing damage that could've led to a catastrophic brain stem stroke. So I guess, yeah, more aggressive.<br />
<br />
But, the more aggressive approach is, in his experience, the most successful. I'm seeing why.<br />
<br />
Overall, he was very pleased with my outcome and progress (I am, too). My measurements--Grabb-Oakes of 6.88mm, CXA of 145 degrees for you technical-curious folk--are all in the happy range and show no signs of cranio-cervical instability (where the skull wobbles on the top vertebrae rather than being rigid on it). CCI scares the crap out of me because treatment is a cranio-cervical fusion, and I'm freaked at the thought of metal being screwed into my bones. I will need annual cervical MRIs for the next several years, though, to monitor and make sure things haven't become unsettled. Incidentally, my brain surgery may have been the most aggressive form, but it's also the least jarring to the area. It's like my upper spine is a Jenga tower--you risk disaster moving any piece, so the less you do, the better.<br />
<br />
When the time came for questions, I asked about the words "probable hereditary disorder of the connective tissue" that he wrote in my records back in November 2014. This is when things, my life, my understanding of my life up to this point, changed.<br />
<br />
I read in recent months about the connective tissue disorder Ehlers-Danlos Syndrome, a genetic condition affecting the production of collagen. It is very frequently, but not exclusively, linked to Chiari malformation, so when diagnosed with one, it is worth looking into the other. I had heard of it before my surgery, but at the time the hellacious symptoms from the Chiari were dominating my life and the possibility of EDS wasn't settling into my compressed skull. Just in the last few weeks, though, I was reading about it and having startling realizations. Yes, that's me. Yes, that's me too. Wait, and that's me...and that...and...<br />
<br />
I asked Dr. B if he had a doctor he recommended about pursuing a possible diagnosis, and he smiled and said, "I already diagnosed you."<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPvAUrYEVn_h9FCnPOCgnhXz74QRdn-Hh4DqZQH-vipDEHmmGYdv5NkpRtEWHMDdoTN-sxaIa0QNsrNYLVKXE4QN9OZH7xlEKcBiJQCQB6CKr4axHJcMFfSGq3ZKtucFudiKqo0mNFQAo/s1600/Whaaaaaaaaaat.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPvAUrYEVn_h9FCnPOCgnhXz74QRdn-Hh4DqZQH-vipDEHmmGYdv5NkpRtEWHMDdoTN-sxaIa0QNsrNYLVKXE4QN9OZH7xlEKcBiJQCQB6CKr4axHJcMFfSGq3ZKtucFudiKqo0mNFQAo/s400/Whaaaaaaaaaat.png" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>I know, minions are a bit overly everywhere right now. But I like 'em and this is my blog, so there.</i></td></tr>
</tbody></table>
Yup. Now, Dr. B hasn't officially written down that I have EDS as <i>which </i>specific connective tissue disorder (and which flavor of EDS I have--there are 6 major ones) will require someone with that breed of specialty to identify, but I am assuredly, confidently recognized as having a CTD that is more than most likely EDS. I asked about finding the right doctor who can help me with this issue with tissue, and he provided some names. The problem (oy) is I need to find a doctor who not only understands EDS, but understands how Chiari and EDS intermingle and interact in ways atypical of a pure-EDS patient. Apparently, the two create a "bastardized" version of EDS (his words) in which the patient does not look purely as one type, but often has multiple symptoms overlapping the types. I could go to a doc familiar with EDS, but if they do not recognize the bizarre hybrid Chiari and EDS create, they may dismiss me. Dr. B said confidently and reassuringly, "If they say you don't have it, it doesn't mean you don't have it. It means they don't know enough to recognize it." (<i>Oy.</i>) Yes...sounds very, <i>very</i> familiar.<br />
<div>
<br /></div>
<div>
He gave me some names for specialists he knows and respects, though he said they had long waiting lists. One is in Chicago and the other in Maryland, but of course, we'll start with a local search. I do have some leads. He suggested I see a geneticist (most of the EDS types are identifiable genetically, though the type I have most symptoms of, type 3/hypermobility, is the only one that has not had its gene identified) and possibly a rheumatologist. I adore my rheumy and have a follow up with her next month, so that makes great sense.</div>
<div>
<br /></div>
<div>
Then he casually added something that floored me. I listened in shocked tears as he said, "Oftentimes patients with EDS and Chiari have a positive rheumatoid factor. It's not high positive, but just enough that they think it's rheumatoid arthritis, but it's actually an indicator of this."</div>
<div>
<br /></div>
<div>
My jaw dropped. I hadn't mentioned my positive RF. He didn't know. And at the time, I didn't know.</div>
<div>
<br /></div>
<div>
Twenty years ago, 22-year-old me suddenly realized my bones ached and body felt strangely heavy-tired. My hands in particular, I noticed, would pulsate and throb. Realizing a young woman shouldn't hurt like this, I went to my then-family doctor--I'd like to add this man is in jail now for being all kinds of gross and inappropriate with several patients--who dismissively and with some annoyance sent me off for testing. My rheumatoid factor was high, around 25 or so when normal is 0-13. It raised suspicion that I had early onset rheumatoid arthritis, so I was sent to a rheumatologist who was without question the weirdest doctor I have ever encountered. The shy, short man was almost afraid to look at me, and certainly afraid to touch me. He was hunched over Igor-style as he walked in, looking up a millisecond to say hello and shake my hand--well, more raise a few of my fingers up and down with his limp, moist paw. He pseudo-examined (in his avoid-touching-way) my hands--which were not red, swollen, hot, tender, or in any other way indicative of RA--and at the end, mousily said that since my tests for lupus were negative, I must have RA. Here, have some drugs, bye...and he scurried out the door. The whole thing felt...peculiar, to say the least.</div>
<div>
<br /></div>
<div>
I tried the meds for a while and then disregarded them in embarrassment. The internet was young in those days, but I had read enough about RA on it to know that wasn't me. Maybe my numbers were just high. Maybe "it's just me," as so many doctors said. I remember nervously chuckling to my-then doctor later that it must just be I'm on my feet too much and I wear the wrong shoes. At this point, I had drawn attention to myself in prayer groups and my friends and family, and I was embarrassed that the diagnosis didn't seem to stick and my response to treatment was nonexistent. Ashamed, I buried this memory and "diagnosis" and didn't speak of it to anyone for nearly two decades. </div>
<div>
<br /></div>
<div>
Then two years ago when my symptoms progressed to where I couldn't ignore them anymore, I was once again sent to a rheumatologist who once again discovered I had a positive RF, but this one recognized I didn't present like RA. She was confounded when a definitive test for RA came back soundly negative--it didn't make sense. But also what didn't make sense was that I had a high RF that was high enough to meet the criteria of a RA diagnosis, but not as high as what is often seen in RA patients (particularly my age when the disease has progressed). Still puzzled, my rheumatologist has my RF on her annual watchlist--why is it positive? It's been bugging her. Now, I have something to share with her. Hmm...I think I'll ask for another copy of my records from Dr. B to give to her.</div>
<div>
<br /></div>
<div>
I have 19 symptoms of EDS at my last count (and Dr. B's too--it was part of my intake that I completely forgot about). <i>Nineteen.</i> Each one, taken individually, seems like a "Huh, that's weird," but together, they form a constellation. </div>
<div>
<br /></div>
<div>
Thirty years of symptoms and history flooded me. </div>
<div>
<br /></div>
<div>
When I was 13, I could pull my left hip out of the socket. I was extremely flexible and while standing could fold myself in half, nose to straightened knees. But if I held it for more than a few seconds, my left hip would disappear, for lack of a better description. I would hear this odd muted grumbling sound, like rocks rolling under water, and my hip would slip and I'd start to fall. The hip would rumble back into the socket as I straightened. It was odd and I reported it to my doctor, who brushed it aside. "No, that can't be what's happening." Age and early-onset osteoarthritis--common in EDS--mean I am not longer this flexible, but I remember it clearly.</div>
<div>
<br />
When I was 12, my PE teacher noticed I had a mild scoliosis during a routine health exam. My doctor confirmed this, but since it's mild, no correction was needed. Doctors still note it from time to time.</div>
<div>
<br /></div>
<div>
When I was in my mid-thirties, I was diagnosed with degenerative disc disease in my spine and spinal stenosis that led to two back surgeries and a whole lot of "you're too young for this." I was told I have the lumbar spine of a person twice my age.</div>
<div>
<br /></div>
<div>
Then there are my extraordinarily flat feet, about which my podiatrist gasped, "I see flat feet every day in my practice, <i>every</i> day...but you, <i>you're</i> practically walking on your ankles." He was genuinely horrified and fascinated--my kind of guy, heh.</div>
<div>
<br /></div>
<div>
And my dislocating jaw that I have to sometimes manually put back in place when eating an apple (unlike my hip, <i>that</i> really hurts). My left ankle sometimes likes to slide in and out too randomly as I walk; doesn't hurt at the time, but hours later...OW. </div>
<div>
<br /></div>
<div>
And my...ugh, sharing in the name of education...pelvic prolapse. This occurred randomly four months after my oldest was born. Again, my doctors were confounded--I had not recently given birth, and even so, my son was born after a short labor and he was under 8lbs. This is something they see in old women. (Again with the "You're too young for this.") </div>
<div>
<br /></div>
<div>
And then there's the general "crunchiness" of my joints. I've been able to snap, crackle, and pop almost every joint in my body since I was very young.</div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWslTZqozl54bcxwn75XyRjyiVCQLfHHaUaB4EL9_PAIxa_aFRHTnncwaDkvzDiG4cw1fr9FGOaCNF4p0aPCjfbxC1lQPFA7eUd3LyaRQ4akLh0ennHSQsHdd6ZgKyOdOCV68dGd9sYYM/s1600/Rice-Krispies-Box-Small.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWslTZqozl54bcxwn75XyRjyiVCQLfHHaUaB4EL9_PAIxa_aFRHTnncwaDkvzDiG4cw1fr9FGOaCNF4p0aPCjfbxC1lQPFA7eUd3LyaRQ4akLh0ennHSQsHdd6ZgKyOdOCV68dGd9sYYM/s400/Rice-Krispies-Box-Small.jpg" width="286" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>The crunching and popping and snapping are great ways to have fun freaking out your friends, though (and most recently, my PCP). EDS bonus! Now, who's hungry?</i></td></tr>
</tbody></table>
<div>
I was told by doctors on numerous occasions, "Eh, it's just how you are. You have loose joints. :::shrug::: " </div>
<div>
<br /></div>
<div>
And then there's the Chiari malformation, itself often a sign of EDS. More telling is the pannus formation, a sort of callous on the top of my odontoid/C2 vertebrae, formed when the supposed-to-be-rigid skull wobbles more than it should. Healthy, normal people don't get these, and it's another sign that I need to be monitored for possible cranio-cervical instability for years to come. If the Jenga tower starts to fall, my poor brainstem could wind up being compressed in the front by the odontoid after having the compression from the rear Chiari taken care of.</div>
<div>
<br /></div>
<div>
I could go on with the other how-ever-many symptoms, but I 1) don't want to bore you (too late?), 2) don't remember them all, 3) don't want to try and prove anything, and 4) want to get to one specific group that for some is a diagnosis in and of itself.</div>
<div>
<br /></div>
<div>
<b>Dysautonomia</b>.</div>
<div>
<br /></div>
<div>
Dys, meaning abnormal, autonomia, referring to the autonomic nervous system--the part that controls the likes of breathing, heart rate, blood pressure. I'd heard about it on an EDS support group and it sounded startlingly familiar. Yes, Dr. B said, dysautonomia applies to me as well. Patients with EDS and Chiari often have this as well, though it is more the name of a group of symptoms than a diagnosis in and of itself. </div>
<div>
<br /></div>
<div>
Because of the faulty autonomic nervous system (I assume due to the no-touchy brain stem being compressed, but that's this layperson's theory), patients experience things like heat intolerance, low baseline temperature, low blood pressure ("orthostatic imbalance"), heart palpitations, dizziness and/or vertigo, fast heartrate, light-headedness, fainting, balance issues, frequent "head rushes," and the like.</div>
<div>
<br /></div>
<div>
Oh.</div>
<div>
<br /></div>
<div>
My.</div>
<div>
<br /></div>
<div>
CRAP.</div>
<div>
<br /></div>
<div>
<i>Ohmicrap</i>. </div>
<div>
<br /></div>
<div>
Once again, thirty years of memories flooded me, and the paralyzing shame and gut-sinking embarrassment I felt came with them.</div>
<div>
<br /></div>
<div>
Like...a friend recently posted a photo of my high school choir when we were on a field trip to a festival in Phoenix. Why wasn't I in the picture? I wondered. Oh. <i>Ohhhhh. </i>A memory I'd buried because of the shame I felt with it came rushing forward. I'd been sent to the ER the night before due to heart palpitations and vertigo. 16yro-me didn't understand what was happening and it frightened me, which of course made it worse, but it was very real. The docs didn't see anything major and chalked it up to "viral labrynthitis" (viral inner ear infection, or more accurately, "We have no idea what is wrong"). I missed the performance the next day as I rested in the hotel room and thus wasn't in the photo. I had multiple heart "hiccups" and issues of vertigo much of the trip, but I was so horribly embarrassed. I was <i>That Girl.</i> The one that was rushed to the ER on a choir trip when *<i>psshh* </i>nothing was <i>really </i>wrong. I didn't <i>hear </i>what people were saying, but I knew what their words were.</div>
<div>
<br /></div>
<div>
I spent the following year getting my heart checked out and was diagnosed with mitrol valve prolapse (which was just <i>un</i>diagnosed last year) and given a nasty beta blocker called Corgard to treat the palpitations. I hated the effect the drug had on me and quit it after a few months. I learned to live with my "heart hiccups" and how to cope with the periods of palipitations and rapid heartrate on my own for the next few decades.</div>
<div>
<br /></div>
<div>
But still, I felt like <i>That Girl.</i></div>
<div>
<i><br /></i></div>
<div>
Heat intolerance?</div>
<div>
<br /></div>
<div>
When I was in junior high, I joined the track team but never made it to my first meet. I couldn't handle our required two-mile warmup in the Indiana afternoon heat and humidity. Early on in the season, I ultimately collapsed on a stranger's front lawn walking back home after the late bus dropped me off at the stop. I still remember the kind worried woman coming out to see me--"Are you okay?" Embarrassed (I was <i>That Girl</i> again), I woozily got up. "Yeah, I'm fine," and hobbled home, unable to get up for the rest of the afternoon. I never went back to practice. </div>
<div>
<i><br /></i></div>
<div>
Scores of times, this sort of story repeated. It's not every time it's hot (typical of the condition, symptoms wax and wane), but it's often enough. Just last week, I had to excuse myself at a pool party when I was sitting in the shade in 90 degree heat...I just could not cool off, no matter how much water I drank. I had to go lie down for a bit inside, then was able to stay outside with the gals and chat with an icepack coming to my aid.</div>
<div>
<i><br /></i></div>
<div>
Still...<i>I'm a wimp,</i> I said to myself, and it and <i>I'm That Girl</i> were written on my soul. I would spend years trying to prove myself wrong--that I was tough and strong--but that's what was carved into my being. That was my fear. <i>I'm weak. I'm just a whiner. Geez, can you say psychosomatic illness? </i>I knew it was being said. Some said it to me, some said it near me, some said it away from me, but mostly I said it to myself. It made me fight harder to try and make it not true.</div>
<div>
<br /></div>
<div>
...Low baseline temperature, yes, light headedness, yes, nearly fainting several times, yes, heart palpitations, yes, rapid heartrate...oh! Yes!</div>
<div>
<br /></div>
<div>
For years, I'd try to exercise, and it seemed like my heart overreacted. Go up a flight of stairs? Heart rate would zoom up to 140. Try to take aerobics in college? Heartrate would jump to over 160. Surely I must be doing this wrong. "No, no, that can't be it" doctors (and the aerobics instructor) would tell me. But it was, and it is.</div>
<div>
<br /></div>
<div>
Lately, both the heartrate and palpitations have gotten obnoxious enough ("Hel-LO! I'm trying to rest and sleep here! WHY YOU BEAT SO HARD AND FAST?") that I've been started on another beta blocker, Atenolol, and it's <i>awesome.</i> Totally works (at least so far) without making me feel funky. For what it's worth, my heartrate never reaches tachycardia levels when at rest, thankfully; it just hovers around 105-110, which is <i>annoying</i> when one is trying to rest, but not dangerous. Just uncomfortable. Boo.</div>
<div>
<br /></div>
<div>
...blood pressure issues...oh. OH!</div>
<div>
<br /></div>
<div>
There are many smaller instances of random near-fainting, but one story jumped out at me in that moment. In 1998, I donated blood for the first and only time for my father's impending surgery. Now, anyone who knows me knows I dig what makes most people squeamish. Wounds? Neat! Autopsies and necropsies? <i>Fascinating. </i>Drawing my blood? Sure! Use this vein; it's my happy vein. Donating blood? Can't be much different, right? NEAT! No, don't worry, I'm not afraid of needles. </div>
<div>
<br /></div>
<div>
And then, when the donation was almost done, a nurse noticed my palor and asked cautiously, "Are you doing okay?" I looked up from my magazine and said, "Sure, I'm fiii..." And then right after the motion of lifting up my head, everything went sparkly and white, and it felt like buckets of ice water were being poured over my head. The next several hours were a blur of "Open your eyes, Laura! Open your eyes!" and "I really recommend you don't donate blood again. I <i>really</i> recommend you don't donate blood again." Apparently, my blood pressure crashed completely off the chart and they couldn't get a reading on me for the next <i>two hours.</i> Somewhere in there was some vomiting, and somewhere in there (ay, the horror) I felt a pressing, urgent need to go to the bathroom--NOW. I had awakened enough to ask to go, but the nurses were all nuh-UH until my blood pressure regulated enough that they could get a reading. Horrified (there was a woman from my parents' church there at the same time to donate for Dad, and I still can see the puzzled and worried look on her face staring at me throughout this ordeal--oh God, I'm <i>That Girl</i> again!), I begged them to take me so I wouldn't mess myself all over the cot while I fought my panicked, gurgling bowels to hold things together in between bouts of vomiting. Eventually, thankfully, I was allowed to go to the bathroom--but with a nurse demanding to be next to me in the restroom while my liquefied bowel content made rapid exit. </div>
<div>
<br /></div>
<div>
This was beyond shame. This was humiliation. </div>
<div>
<br /></div>
<div>
Dr. B said that this all made sense; my vasovagal response (I still remember telling this story to a nurse friend who said, "Omigosh! You totally vagaled!") is due to my body's inability to properly regulate blood pressure. It couldn't keep up with the changes the blood donation required. </div>
<div>
<br /></div>
<div>
He was almost casual in his explanation in a "Well, yes, of course, that makes sense," but after ending the call, I shook with sobs as decades of memories like the ones shared here and the shame that surrounded them flooded me.</div>
<div>
<br /></div>
<div>
Decades of doubt, embarrassment, shame, <i>humiliation</i> over my symptoms. Decades of knowing what others were saying about me, and then saying worse to my own. Decades of trying to ignore what my body was telling me. Decades trying to <i>not</i> be <i>That Girl.</i></div>
<div>
<i><br /></i></div>
<div>
When I nearly fainted in my classroom two years ago and couldn't shake the feeling the rest of the day, I refused to let my students run for help. I knew what would happen. The office would call an ambulance. I'd be <i>That Girl. </i>At the urging of my own PCP, I later begrudgingly went to the hospital. But when the ER docs ruled out a stroke and heart attack and dismissed me as just hyperventilating myself, I was <i>That Girl. </i>I broke into violent sobs when I came home, shaken by this incident and the years of incidents before it.</div>
<div>
<i><br /></i></div>
<div>
Surely, since no doctors could find anything for all those years, it just meant I was crazy, right? Hyperemotional? Psychosomatic? Weak? Whining? Attention-seeking? </div>
<div>
<br /></div>
<div>
Bury it. Hide it. Deny it. Push forward and ignore what my body is telling me, keep pushing, <i>KEEP PUSHING, <b>KEEP PUSHING!</b> ...</i>Until my body finally said enough was <i>enough </i>and pulled the rug out from under my life, demanding I see and deal with what is <i>real</i> and <i>not</i> in my head and <i>not </i>about a weakness in my character.</div>
<div>
<br /></div>
<div>
Chiari Malformation, type 1. Ehlers-Danlos Syndrome, likely type 3. Dysautonomia. This is what is real and true.</div>
<div>
<br /></div>
<div>
At the end of the appointment, Dr. B asked me to do something: tell my story. Go on social media (and perhaps blog, heh) and share what I've been through, what my symptoms are, the battle I've endured medically, physically, emotionally, psychologically...share the doubt, the shame, the judgment, the "being written off as a whackadoo." He emphasized this isn't about sending people to this doctor or that doctor; he wasn't asking for referrals. He was urging me to help others lost in the fog to these conditions.</div>
<div>
<br /></div>
<div>
In other words, <i>educate. </i><b>That</b><i style="font-weight: bold;"> </i>I can do.</div>
<div>
<br /></div>
<div>
And that <i>you </i>can do too.</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO38Mbwt3-b86q1upgnbncyx7Qn2gSQypHonOY53Y6wlMZ5Isfg97BhDX-1a-xcRCHrY52PEo_D9qhgQzgb4Bje9ao7DkAkNWhPVplwoOuuocChHsHNutc74anZZ0n7o2mQNKU_wt78U0/s1600/6mo+post+op+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgO38Mbwt3-b86q1upgnbncyx7Qn2gSQypHonOY53Y6wlMZ5Isfg97BhDX-1a-xcRCHrY52PEo_D9qhgQzgb4Bje9ao7DkAkNWhPVplwoOuuocChHsHNutc74anZZ0n7o2mQNKU_wt78U0/s400/6mo+post+op+2.jpg" width="305" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Your favorite Whackadoo</i></td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoI5Ip7cmGWBcM6aq0BfKNrRFmuqBYYM9hJx4AglFJFLGd89eXIo1-DRuSjCs3HPoAXhCvNKTgzHlOG3GHEAcW-Uy-UMVmpFaBDgkVBk1SIWdWyWFbshf8TTDvlvU61Ny_Jngzgo2461I/s1600/party+brain.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoI5Ip7cmGWBcM6aq0BfKNrRFmuqBYYM9hJx4AglFJFLGd89eXIo1-DRuSjCs3HPoAXhCvNKTgzHlOG3GHEAcW-Uy-UMVmpFaBDgkVBk1SIWdWyWFbshf8TTDvlvU61Ny_Jngzgo2461I/s400/party+brain.jpg" width="400" /></a></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br />
<div>
<br /></div>
</div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com10tag:blogger.com,1999:blog-8816589799315004018.post-79202547741405062352015-07-13T21:58:00.002-07:002016-01-10T20:35:25.180-08:00Happy half-anniversary! Six months, baby!Normally "monthi-versaries" are the thing celebrated by elated young couples still buzzing about in the intoxicating haze of new love. "One month today, baby!" "Three months today and only getting better!" Well...my new love is my new body and my new life. So, happy half-anniversary/six-monthiversary, baby!<br />
<br />
Six months ago, I did what I now see as a bit insane--I got on a plane with my husband, flew 3000 miles from one coastal shore to another, and entrusted a man I'd never met in person to cut into my skull and remove portions of my brain. I acted on this with the deep belief the herniated brain tonsils were behind a huge amount of my symptoms and the reason they were becoming more severe, despite the repeated chorus of "this is not your issue" from five neurosurgeons and two neurologists in the Los Angeles area over a 10 month period. I respectfully listened, but my nagging instincts disagreed. To quote Robin Williams's character in <i>Awakenings: </i>"I'm sorry, but if you were right, I'd agree with you."<br />
<br />
Six months <i>today.</i> Holy crap. It feels like a lifetime ago.<br />
<br />
I suppose, in a way, it was. Although, the life I was leading before then feels like another lifetime away as well. Hmm. Perhaps I'm part feline, as it seems I'm already on my third life.<br />
<br />
I went for my six-month follow-up with my primary care physician today, and it was amazing. It seems hyperbolic to say such a thing about a simple follow-up, but it was. In case I haven't made this abundantly clear in my other blog posts, I adore my PCP. She listens and takes care of me with a perfect balance of being attuned to what I am saying as well as what my body is telling her, and is open to discussing my case with me rather than talking at me about it. She has seen my story arc over the last two years, from the follow up from the ER visit in May 2013 where she sunk down and looked at me eye-to-eye and said, "I know something is wrong with you, because you are here. You <i>never</i> come in. And we are going to find out what's wrong."<br />
<br />
And she has. For two years, she has. She has seen my slow decline, my mental health slipping with my physical. She was protective when I said I was going to New York, but understood what I explained about my process enough to support me (and if she thought I was out to lunch, I know she would have made it crystal clear, heh). She did my pre-op exam and noted my neurological abnormalities and wished me well, letting me know she was there if I needed anything on my return. At my two week post op visit, she removed my stitches and complimented the healing scar while cautioning me not to overdo it (who, ME?) because YES, YOU.<br />
<br />
That was it. I have had zero contact with her for almost six months. No skull-crushing headaches resulting in me calling begging for help with the inescapable pain and nausea. No referrals to MRIs/neurologists/neurosurgeons/rheumatologists/whatever-ologists. No blood tests, spinal taps, repeat tests, going over results, more tests. After a cacophonous two years, six months of medical <i>silence.</i><br />
<i><br /></i>
I came back today (you know, 'cause I kinda had to), and she said what every single person who hasn't seen me in months has said: I'm brighter. I'm <i>alive</i>. Everything about how I carry and present myself is different, My mom said the light is back on behind my eyes. I'm <i>me.</i> Heck, I've even had people tell me my tone in my Facebook posts has changed.<br />
<i><br /></i>
She was astounded to hear my pressure headaches are gone. Just...vanished. Oh, I still get headaches--normal people do get them, after all--but I'm still surprised how every time I can take something simple, like a Sudafed for my sinuses yesterday, and the cute widdle headache just <i>goes away. </i>She also was taken aback by the absence of my previously-constantly-present hand tremors. Just...vanished. I was almost giddy to show her how I can hold my hands out and they don't vibrate anymore.<br />
<br />
Examining me was more like playing with a new toy. "Ooh, what can it do? Let's see!" She was thrilled (in her professional way, heh, she's the sincere-but-stoic type) to see my reflexes are improved. (I was amused when she checked my knees, she moved over to the side--in the past my hyperreflexia on my right side meant you definitely wanted to be out of the way of the response.) I was still a little hyperreflexive in my right leg when the knee was tapped, but not as crazy overreactive, and my left arm when tapped at the elbow is also a bit overreactive, but not punchy-overreactive. She also said that before, my hands and feet who vibrate (well, it was some other medical term) after the reflex test--again, showing hyperreflexia--but this time, despite the mild overreactions, there was none. Woot. All of my responses (she had me do things like puff out my cheeks and stick my tongue out at her, ha!) are symmetrical, so that's a big bottle of awesome sauce.<br />
<br />
I was a bit bummed my Romberg test is still positive. This is where I stand with my feet together, hands to the side, and close my eyes. My poor brain can't find where I am in space and I start to fall. She said wobbling is normal, but falling--to me it feels like someone has grabbed my shirt and is slowly pulling me backwards--is an absolutely abnormal response. Ah well. I shrugged and said, hey, I can live with that.<br />
<br />
And that's just it. I do have scads of neurological leftovers due to nerve damage from the longterm compression that I can live with because they can be lived through. My lower right leg is still numb to temperature; I still get the feeling my right leg and up to my hip are sitting in cold water (more than a few times, it's fooled me into checking my clothes for wet spots); I still have exercise intolerance and spasticity; I still get wobbly with exertion; I still am heat intolerant (and if anything, am worse than before); I still get sudden "You sleep NOW" drained fatigue (but thus far it's a fraction of the severity it was before); I still confuse words and sometimes physically struggle to untangle them in my mouth; the body aches still rage from time to time; I still can get easily sensory overloaded to multiple inputs; my eyes still get a little wonky; blah blah blah symptoms blah. But all of those, again, <i>can be lived with and lived through. </i>They're annoying. <i>But I can live life.</i><br />
<i><br /></i>
My PCP said as we ended the appointment, "You absolutely made the right call going out to New York." Then she reiterated, "You absolutely made the right decision." That affirmation meant, means, the absolute world to me--and it's true.<br />
<i><br /></i>At this point at least, I can't ride horses and for now shouldn't even be handling a 1000lb animal, but...I can drive a 225lb miniature horse.<br />
<br />
I can't teach, but I can take my kids to school, pick them up, help them with homework, and even do a volunteer lesson in their classroom now and then.<br />
<br />
I can't have a exhilarating ride or workout, but even on my worst days I can walk the dog.<br />
<br />
I can read to my boys at night. I can bake and do crafts with them. I can do more in the house. I can run errands and not come home exhausted. (I can shop!) I can care for our snakes and monitor the incubating eggs. I can be home and take care of the boys when they're home sick from school. I can help my husband grade. I can, for the first time in over a year, drive myself the hour-plus it takes to go to my mom's.<br />
<br />
I can go to car shows, theme parks, zoos, museums, parks, renting a scooter if need be but still <i>going, </i>and <i>enjoying</i> it, not just slogging through it<i>.</i><br />
<br />
I can watch movies on the couch with my husband.<br />
<br />
I can go out for coffee.<br />
<br />
I can <i>live life, </i>and I absolutely love it.<br />
<br />
Happy six-monthiversary, babe.LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com2tag:blogger.com,1999:blog-8816589799315004018.post-712185261279385672015-04-14T13:34:00.002-07:002015-04-14T17:22:44.622-07:00Sometimes, there is no solution. CP Trilogy June 14, 2002 - April 12, 2015<span style="background-color: ; line-height: 19.3199996948242px;"><span style="font-family: inherit;">I enjoy playing spider solitaire--I like how there are so many ways to get out of a losing situation, and how with some creative thinking and looking at the cards with a new perspective, a winning solution can almost always be found. But sometimes, some games, the cards dealt prove impossible to manipulate into success, no matter how many different angles are tried. Those games, I sigh and resign myself to the realization there is no solution, no winning, and accept the loss.</span></span><br />
<span style="background-color: ; line-height: 19.3199996948242px;"><span style="font-family: inherit;"><br /></span></span>
<span style="font-family: inherit;"><span style="background-color: ;">My head hurts. My heart hurts.</span><br style="background-color: ;" /><br style="background-color: ;" /><span style="background-color: ;">Trilogy colicked last week, mere days after we'd brought him to a new facility for retraining with the intent to put him up for sale. It was a gut-wrenching decision for me, but knowing what a great horse he was and how he <i>liked</i> to work, it felt terribly unfair to keep such a busy boy at home, unridden and underused, while I continue to heal and await my body's new normal. </span></span><span style="background-color: ; font-family: inherit;">Ever adaptable and unflappable, he took the move in stride, curious about his new surroundings and reportedly was absolutely fabulous working (as opposed to leisurely walking about on the trail) under saddle for the first time in nearly two years--you'd never have known it. *sigh* Such a good boy.</span><br />
<span style="background-color: ; font-family: inherit;"><br /></span>
<span style="background-color: ; font-family: inherit;">The colic started just three days later on Tuesday, April 7 (my wedding anniversary), with no poop in his stall after many hours. Three days and three urgent vet calls later, he still was not right. When things started to turn again after a period of calm, it became clear he was not recovering and we ended his suffering. He was put down this past Sunday, April 12.</span><br />
<span style="font-family: inherit;"><br style="background-color: ;" /><span style="background-color: ;">Everything about it was awful. </span><i style="background-color: ;">Awful</i><span style="background-color: ;">. He was not the horse I knew. There were momentary glimpses of him, but I caught myself repeatedly vexed by his behavior in the quieter, less obviously symptomatic hours, commenting, "This isn't like him. He's not this type of horse. He doesn't </span><i style="background-color: ;">do </i><span style="background-color: ;">this." </span><br style="background-color: ;" /><br style="background-color: ;" /><span style="background-color: ;">My 9-year-old son was adamant he get some final pictures with Tril before we put him down. </span></span><span style="background-color: ; font-family: inherit;">In those final photos, while Tril is still eager to get the carrots from my son (a blessing, as during part of this hell, he had no appetite and refused to eat), his eye is different. My inquisitive, goofy, sweet boy's </span><span style="font-family: inherit;">eyes were tired.</span><span style="background-color: ; font-family: inherit;"> Sad, even. I suppose if there were a picture of my eyes, they would have been too at the time. Well, and now, too.</span><br />
<span style="font-family: inherit;"><span style="background-color: ;"><br /></span></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeh2OR0b-JkBkzM6mbKJWQQxJMH3cLjaSZS8H8VTIkHs0tHhIMS2YK6_9Cgt0agQzXk4Bof6SYhnELz3741QCw8cN7uFZUF3TyeTxN7jW9cn_aP3Wvf4C18uSUN-1rWa_Lqx3BTT6MFNg/s1600/Tril+and+Boy+1+final+moments.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeh2OR0b-JkBkzM6mbKJWQQxJMH3cLjaSZS8H8VTIkHs0tHhIMS2YK6_9Cgt0agQzXk4Bof6SYhnELz3741QCw8cN7uFZUF3TyeTxN7jW9cn_aP3Wvf4C18uSUN-1rWa_Lqx3BTT6MFNg/s1600/Tril+and+Boy+1+final+moments.jpg" height="297" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Final moments--I can hardly look at this</i></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqwMVpBvYYzfvNTqFQUHr6v0ZoxvR0NqQtwD050lfBchJPwNhvJwQ49GA9emLocx5WXNtID0ev-RXPB4dfwbt9xQCsZ1WGjTuFBTZN-Ih7Dfo107L4R93PXvgspdjUeb88UjmdgpBHEkg/s1600/Tril+and+Boy+1+10+days+prior.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-size: x-small;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqwMVpBvYYzfvNTqFQUHr6v0ZoxvR0NqQtwD050lfBchJPwNhvJwQ49GA9emLocx5WXNtID0ev-RXPB4dfwbt9xQCsZ1WGjTuFBTZN-Ih7Dfo107L4R93PXvgspdjUeb88UjmdgpBHEkg/s1600/Tril+and+Boy+1+10+days+prior.jpg" height="400" width="300" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="text-align: start;"><i><span style="font-size: x-small;">Here's the pair in much happier, healthier circumstances, just 10 days prior.</span></i></span></td></tr>
</tbody></table>
<span style="background-color: ; font-family: inherit;">The storyteller in me wants to go into the details, but I am just depleted mentally, emotionally, and physically. However, I must share how my son impressed me throughout this. The whole family was at the barn to say our goodbyes, but my husband took our youngest away when the time came. I urged my 9-year-old to follow, but he was adamant he stay. I described gently how putting a horse down is not like other animals; it is a bit more brutal as the animal will drop. But he insisted. "Because, he's </span><i style="background-color: ; font-family: inherit;">our</i><span style="background-color: ; font-family: inherit;"> pet, and you're </span><i style="background-color: ; font-family: inherit;">my</i><span style="background-color: ; font-family: inherit;"> mom, and I don't want you to be alone in this." </span><span style="background-color: ; font-family: inherit;">The heart, it broke. I accepted this and explained briefly what and how things were about to happen.</span><br />
<span style="font-family: inherit;"><br style="background-color: ;" /><span style="background-color: ;">So, he stayed (at a safe distance) throughout the whole thing. As the vet sedated Tril, I sobbed while rubbing his head, "I'm so sorry. It wasn't supposed to be like this. It wasn't supposed to be like this! I'm so sorry." When the deed was done and I had regathered myself, I looked up and saw my son's watery eyes looking back at me. After retrieving Tril's personalized halter and his tail (cutting it seemed so criminal), I walked over to my son and we embraced and wept together. I thanked my son for staying and for being so brave, and before we left, he asked if he could go pet Tril and say goodbye. My sweet, strong boy was a man that day.</span></span><br />
<span style="font-family: inherit;"><span style="background-color: ;"><br /></span></span>
<span style="background-color: ;">When I lost Ana, I had no other horse at the barn to help me through the grief--Firefly was still doing her work with the therapy program. This time, though, I have a horse to groom, to work, to tend to--I have a <i>reason</i> for going to the barn. (Three, actually; we recently added two mini-Nubian bucklings, Moe and Roscoe, to our little menagerie in honor of our son's 9th birthday. He's been asking for a goat for every Christmas and birthday for <i>years,</i> and admittedly, the idea grew on us until we caved. Moe is technically his goat and his gift--he picked him out himself.)</span><br />
<span style="background-color: ;"><br /></span>
Yesterday, exhausted as I was in every way I could be, I made sure to fawn all over my little red mare. Her mane and tail were conditioned and thoroughly brushed out, her tail neatly trimmed so as not to drag on the ground, her bridle path clipped, her supplements prepared for the next few weeks to come--with a digestive aid added. The idea of <i>her</i> colicking now is too much to bear, so I'm doing what I can to prevent it.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjKsCiNzghn_FzBguSNzF7ozZy5adyc348Sffbo1FahbUq4BZhr7ypLZzBJPmlfantRohnzzULTlIZjIfueiwOnguc-Vuzd4GupM4zlWoWvJcrauaR7a1Li0WFWpEDxHZgvAC3jPjYX9k/s1600/Firefly+therapy.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjKsCiNzghn_FzBguSNzF7ozZy5adyc348Sffbo1FahbUq4BZhr7ypLZzBJPmlfantRohnzzULTlIZjIfueiwOnguc-Vuzd4GupM4zlWoWvJcrauaR7a1Li0WFWpEDxHZgvAC3jPjYX9k/s1600/Firefly+therapy.jpg" height="363" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>I am ready for my close-up. And that peppermint you're bribing me with to get the cute picture.</i></td></tr>
</tbody></table>
Of course, she loved being pampered, but loved more when I scattered some hay for her to snack on as she wandered the property with the bucklings. I am utterly <i>shocked</i> how much she was taken to the goats. Shocked! She let them <i>share the hay with her. </i>She shared <b>FOOD. </b>Firefly! She who makes sure <i>all</i> horses are at least 20' away from anything edible! <i>Sharing</i> food!<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmPpklo0L0FwsGOhhT8aW8i39fIog_ntQwF5jVxjvrRa6HEQCQkO9nl0jlmNpQ246J4VgXZVIJa4ckrUDSoxBjC15eoGB9ytb4xbs5Xxnac1tPY2lZpG0hcopEIClq4OQNcUblbqAOPFw/s1600/Firefly+and+kids.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmPpklo0L0FwsGOhhT8aW8i39fIog_ntQwF5jVxjvrRa6HEQCQkO9nl0jlmNpQ246J4VgXZVIJa4ckrUDSoxBjC15eoGB9ytb4xbs5Xxnac1tPY2lZpG0hcopEIClq4OQNcUblbqAOPFw/s1600/Firefly+and+kids.jpg" height="326" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Photographic proof</i></td></tr>
</tbody></table>
I mean, I get it; they're adorable. But...wow. I've since heard from the guy who feeds in the morning for us that the three of them all hang out in the shared corner of their paddocks together. A friend explained of course Firefly gets along with them--she's finally the giant she has always pictured herself being.<br />
<div>
<br /></div>
<div>
But the red-headed mini-mare who always puts on the tough-broad front let her true colors show briefly the first day we moved Tril. Though she soon moved on (perhaps aided by her new Nubian neighbors), that afternoon, she occasionally paced and whinnied, worried, eager, earnestly looking and calling for him and appeared genuinely affected he did not return.</div>
<div>
<br /></div>
<div>
I understand. I miss him too, girl. I miss him too. </div>
<div>
<i><br /></i></div>
<div>
<i>It wasn't supposed to be like this. I'm so sorry, Tril, it was <b>not</b> supposed to be like this! You were going to get this great new home, and I was going to follow your new story and cheer you on, with that right of first refusal always guaranteeing you had a home with us if the need came.</i></div>
<div>
<i><br /></i></div>
<div>
<i>You go find Ana. She'll love you! You'll be her confidence, and she'll be your kindness. Look for her, Tril. She's waiting at the end of the trail for you.</i></div>
<div>
<i><br /></i></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKzMgjavnGq9PFDYwWcVTny8-WJVKhEeWROWPk3r0UWd7VuY0T_7RbAv_jXMXDo-zcr-9mqXoogEcq7b4mOrQp5d0IpblPYax79iXQPIH-fdHwDRAFVfJUaNs-ytj4npKo6Fvu9yns-4Y/s1600/Tril+galloping+in+sunset.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKzMgjavnGq9PFDYwWcVTny8-WJVKhEeWROWPk3r0UWd7VuY0T_7RbAv_jXMXDo-zcr-9mqXoogEcq7b4mOrQp5d0IpblPYax79iXQPIH-fdHwDRAFVfJUaNs-ytj4npKo6Fvu9yns-4Y/s1600/Tril+galloping+in+sunset.jpg" height="301" width="400" /></a></div>
<div>
<i><br /></i>
<br />
<br />
<span style="font-family: inherit;"><span style="background-color: ;"><br /></span></span>
<span style="font-family: inherit;"><span style="background-color: ;"><br /></span></span>
</div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com1tag:blogger.com,1999:blog-8816589799315004018.post-43722321877125478212015-03-03T11:30:00.002-08:002015-03-03T11:52:07.066-08:00Post Op Week 7: Opening up dirty windows and letting the sun illuminate my words, and world<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">Tomorrow marks seven weeks since that fateful surgery--I want to say life-changing, but not enough time has passed to know if its changed my entire life. It certainly has changed my life for the last seven weeks, however. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">(You may ask how I'm feeling. Well...it seems it is my turn with the virus that has gone through the house, so at the moment rather crappy. But it's the normal congested, scratchy throat, cough, low-grade fever type of crappy, so that's, uh, a good thing...kinda. You follow.) </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">The other week, I was going through my downloaded photos from 2014, sorting them into folders and whatnot (hmm, reminds me, time to back things up again). As I revisited images from January to December and recalled the days behind them, I became increasingly aware of this slow, steady decline in my health as 2014 progressed. Images of my activities in March stunned me as they seemed completely impossible for my December self. Looking back over the whole of the year, I became aware there had been this slow, sucking quagmire that steadily dragged me down further and further as time progressed. Toward the end of the year, I wasn't living my life; I was slogging through it, enduring the days rather than enjoying. I fought to keep on top of the mire, seeking joy and hope and optimism, but in hindsight, I can see how through that battle I was nevertheless gradually sinking deeper. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">This is what I mean when I speak of the brightness I now feel—there is a mental energy, a drive, a motivation, a...*radiance* to my world that I’d forgotten about. Second to the loss of my headaches—and they remain completely gone—this is my favorite, most exciting post-surgical effect. I cannot describe it adequately, though I have repeatedly tried. The best I have come up with is my life before was like living life looking through filthy windows while wearing earplugs; now, suddenly the windows are crystal clear and the earplugs are removed. Life is BRIGHT and INTERESTING.</span><br />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;"><br /></span>
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;"><i>(The title of this blog post references Natasha Bedingfield's song Unwritten, which has been borderline anthemic for me in the last few years. Don't know it? Vaguely remember it from a nearly a decade ago? Do your day a favor and listen again to it and let those words soak into your skin. </i></span><br />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/b7k0a5hYnSI/0.jpg" frameborder="0" height="266" src="http://www.youtube.com/embed/b7k0a5hYnSI?feature=player_embedded" width="320"></iframe></div>
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;"><br /></span>
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;"><br /></span>
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;"><i>No matter where you are in your life, today is a blank page--where your book begins.The rest is still unwritten.)</i></span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">Speaking of bright, after reading my surgical report I had a light bulb moment. The gradual decline (beyond just 2014) made sense. I’m not sure if my theory is correct, but I believe my health deteriorated as the decades-in-the forming adhesions continuously grew, gluing my cerebellar tonsils to my brain stem, my cervical spinal cord, and even the arteries in the area, gradually and eventually sealing the opening (foramen magnum) shut. My brain became increasingly deprived of CSF until it was starving for it, and the mechanisms in place to balance intercranial pressure became blocked by the long, lonnng term effects of cranial compression. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">What would have happened had I not had surgery? Obviously, it's all conjecture. Dr. Bolognese told me I would most likely either stay the same or get a little bit worse (in what ways, he didn't say, and it was a rare moment I didn't want to ask), so coming from an expert, that is the most likely scenario. I will say research has repeatedly shown long term CSF blockages can and often do result in hydrocephalus and/or cysts in the spinal cord (called a syrinx; the condition is called syringomelia) in Chiari patients. There have also been many reported deaths with the condition; two just in the last month in the largest online Chiari community to which I belong. I deliberately chose the word “with” the condition and not “because of”—their actual mechanism of death may involve the heart (as was the case with one 28yro Chiari community member) or the like, so it is not recorded as directly attributable to Chiari. There is astonishingly little professionally written about the connection between Chiari and death, particularly in adults, perhaps because its sometimes catastrophic effect on systems controlling breathing and heart rate result in those being listed as official cause of death. What is posted in community forums must be read with a skeptically raised eyebrow, but, there is no question death with and caused by this condition absolutely does, can, and has happened. (There is even an episode of Dr. G, Medical Examiner, highlighting the case of a child who died in his sleep due to a Chiari malformation that compressed his brain stem and silenced the autonomic command to breathe. His Chiari had actually been found in a previous MRI but was so dismissed by the neurologist--an incredibly common experience for Chiari patients--it wasn't even mentioned to his parents. They tragically learned of it postmortem.) I don’t mean to be dark and frightening or dramatic, but I also feel the need to stress how serious Chiari can be, and how misunderstanding/misdiagnosing/ mistreating it can be dangerous to outright deadly. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">But that isn’t me, and that isn’t my reality, and I am grateful.</span><br />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;"><br /></span>
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">This, however, is me, seven weeks post-op. The scar is slowly fading as hair grows and the incision heals.</span><br />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3luW2VXydNwDSvIUp4LYMA7KXLxqutuxpkF2duSxaQ5YBD-eeFfcHE3wUMTJH0yv3XaKeK-ZlvMOfwNxaD2f60l0B11ZlBG9SuApKWsYBXG7yRBO-HBrBLVBDnSGFNVA7dlk6XX06bL4/s1600/7+week+post+op+1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3luW2VXydNwDSvIUp4LYMA7KXLxqutuxpkF2duSxaQ5YBD-eeFfcHE3wUMTJH0yv3XaKeK-ZlvMOfwNxaD2f60l0B11ZlBG9SuApKWsYBXG7yRBO-HBrBLVBDnSGFNVA7dlk6XX06bL4/s1600/7+week+post+op+1.jpg" height="400" width="288" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Is it weird I kinda want the scar to be more visible and less hidden?</i></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo-wa7g8xmN3Zz1ZZjSvX5uu2GtSTfmk9ImI8-1_nnCNEWJNUDuu7pHK6y6dMgHNEiKXagfBqL_LgX7EmvntiiPQgLDd7rkXodJGiR29F-4cdutJenltku5Uyl4-wm9xg3aEBBU8OnQbg/s1600/7+weeks+post+op+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo-wa7g8xmN3Zz1ZZjSvX5uu2GtSTfmk9ImI8-1_nnCNEWJNUDuu7pHK6y6dMgHNEiKXagfBqL_LgX7EmvntiiPQgLDd7rkXodJGiR29F-4cdutJenltku5Uyl4-wm9xg3aEBBU8OnQbg/s1600/7+weeks+post+op+2.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Rather...interesting hair cut, hmm? Gonna be a bit longer before I can rest my head in a hairdresser's shampoo sink though.</i></td></tr>
</tbody></table>
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">I am also regular-annoying-cold-sick and quite tired now, so this will be it for now for this update. There’s more I do want to say, but the sofa beckons and I’m eager to answer its call. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">So, until next time—continued love, appreciation, and gratitude to you and yours.</span>LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-29980044419133179602015-03-03T11:15:00.002-08:002015-03-03T11:15:39.987-08:00Adhesions are NOT endearing--but they tell an enlightening story<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">Reading my surgical report has revealed some interesting new details. Even though I updated just a couple of days ago, I wanted to share here as well. </span><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">I previously mentioned how the report said the arachnoid membrane (where CSF is housed--well, technically the subarachoid space just below it) had areas of opacity. Well, it also says this: "Numerous adhesions to the cerebellar tonsils were cut sharply...Other arachnoidal adhesions of the tonsils to both the posterior-inferior cerebellar arteries, the dorsal brain stem, and the upper cervical spinal cord were dissected and divided sharply." </span><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">Now, when I read that, I somewhat assumed "adhesion" meant some sort of normal connective tissue that had to be severed during the decompression and tonsillectomy. Turns out, uh, nope. A quick search resulted in scores of medical-vernacular-dense websites describing the occurrence of adhesions specifically in situations of significant cranial compression. </span><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">It took a lot of reading, parsing, looking up terms, and then verifying on other sites, but the gist is adhesions are somewhat akin to scar tissue (actually, one site described it as such) that can form on the anatomy in the area due to extended periods of cranial compression. </span><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">The best description probably comes from, appropriately enough, a textbook called "Craniovertebral Junction: Diagnosis--Pathology--Surgical Techniques": "The effect of chronic severe foramen magnum [opening of the skull] impaction by the cerebellar tonsils is the formation of arachnoidal adhesions, which may be the primary pathological focus. The adhesions may be quite pervasive, involving the brainstem [in my case and as you see quoted in my report above, yes], posteriointeferior cerebellar artery [yes], and spinal cord [yes]. Microlysis of the adhesions is an important part of the internal decompression." </span><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">Basically, everything was so compressed for so long (uh, 41+ years), it sort of started growing together. This explains what was going on with me even more. Here I am, post freakin' brain surgery, and I'm *still* relieved to see MORE black and white evidence that *something was very wrong* with my brain. (Well, brain, arachnoid membrane, spinal cord...) </span><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">Oh, and incidentally, the arachnoid membrane is called that because of its resemblance to a spider's web. :) </span><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">In other update news, I called the anesthesiologist's billing office and confirmed they had billed my primary insurance, but not my secondary. After I gave her the information over the phone, she was able to submit the claim via computer while still talking to me. So, thumbs up there as well. Yay for two months of overlapping coverage! </span><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">And now, I would like to thank my son Trent for waiting until the 5 week post op mark to get sick. I can stay home with him and just be his mommy. I've been able to make him mac and cheese, play ball in the backyard with him, practice his letters and sounds with him, and otherwise more or less keep up with a 5yro who's almost completely unaware of his fever and cough. Almost. Team Umizoomi and an extra long naptime due to both illness and medication ensure I get my rest as well. </span><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" /><span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">Thank you all, again, AGAIN, so very much. February may be the month of love, but I've been feeling it long before it rolled around. Much love back from me, us, in return.</span>LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-77366473733864177752015-03-03T11:13:00.001-08:002015-03-03T12:55:24.891-08:00Five Week Post Op: Surgical Report reports<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">Five weeks today. Cuh. Ray. Zee. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">And, apparently in honor of that, I received both my surgical report *and* a bill from the anesthesiologist. Honestly, I'm not sure which is harder to interpret. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">From what I gathered from the surgical report, my brain tonsils were thicker and the arachnoid membrane had areas of opacity but not calcified deposits. (Apparently, the brain has 3 layers of membrane: the dura mater is the outer layer, arachnoid mater central, and pia mater final. Between the arachnoid and pia mater is the subarachnoid space, where CSF flows--thus our interest in the area.) Removal of the offending tonsils resulted in "brisk, pulsatile flow of cerebral spinal fluid" going up into and through all the places it's meant to be. Unplugging the CSF dam let the precious fluid flow. :) </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">I also kept seeing that he used a #11 blade, so, there's...uh...that, should you want to go shopping for one for yourself. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">The report is obviously dense in medical lingo, but I get the impression that--as Dr. B said the day of my surgery--things went as expected, both with what he found when he went in and then in executing the plan to do with what was found. So, yay, or something. I'm printing up that report and adding it to my Giant Binder O' Medical Stuff as well as sending a copy on to my PCP. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">As for my bill from the anesthesiologist, it was filled with billed amounts and insurance adjustments. Actually, it's fascinating: inserting the arterial line (the one the monitored my blood pressure with every heartbeat and gave my arms a zombiefied look for a few weeks) had a billing amount of $795. Interesting that's separate. Then there's just a charge "anesthesia services," which must be all the etcetera activities involved in keeping Laura unconscious while her skull and brain are cut into. That billed amount is $10,600, but once insurance paid and the amount was adjusted, and we are left with $939. But! What I realized reading this bill while I typed details here is our secondary insurance was not billed--there's only one insurance listed as paying. So, hopefully we can whittle that down a little further. Initially I thought both insurances had paid, but that's two payments for the two different services. Good thing I came here to talk to you guys to realize that detail. ;) Time to roll up the sleeves and start this fun process--one I have a feeling we'll be in for a while--of contacting insurance(s) and medical office(s) ensuring everyone pays what they should before we start writing checks. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">As to how I'm feeling, in hindsight--much better each day! (Though it's sort of like, feel great today! Ooh, do too much. Feel awful next day. Repeat, but with a gradual upward trend.) I say "i hindsight" because in the moment it's still I WANT TO DO ALL THE THINGS AND MY BODY WON'T LET ME. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">Today, for example, I overdid it a tad (who, meeeee?). While according to Fitbit I average about 6000 steps in an entire day, I was just under 6000 steps by 11am. Whoops. (Pre-surgery, my daily goal was 8000.) "Overdoing it" makes me a bit wobbly as my muscles (particularly arms, shoulders, and chest) struggle to keep up with use. My incision area feels swollen and tender--uh, likely because it is--and my eyes ache from the increased pressure. Huh; I just realized I had a headache, but it's such a cute little baby thing compared to what I lived with before I don't call it that. My scalp is tender and my eyes hurt, and I know exactly why. Pffft. That's no headache! ;) I came home and crashed on our new couch, enjoying the built in recliner, and watched a few hours of mindless television, complying with a "Yes ma'am" to my body's demands to STOP IT ALREADY AND REST. NOW. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">I am noticing a few symptoms that are noticeable and annoying, but not devastating, that have lingered. Most aggravating are the short term memory issues. Seriously. Everyone has this sort of experience, as did I in my healthier days, but this is much more frequent than I ever recall it happening before. It's that feeling of walking into a room and forgetting why, but many freakin' times each day in many different ways. I keep my phone handy to type up reminders, and I swear half the time I forget what the reminder was as soon as notepad opens. I've mixed up procedural items (akin to putting the milk in the cabinet and cereal in the fridge) a bit more frequently than before, too, and my word recollection is a bit slower--sometimes the word is just POOF gone--than before. All of this was experienced before surgery, and as all my symptoms ebbed and flowed (except the headaches), I don't know if this is a true increase in that symptom or just its "normal" turn to be more prevalent than others before taking its place in Quiet Symptom Land. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">The feeling of ants crawling up the head and down the arms and legs ("parasthesia" I've learned it's called) still shows up randomly, sometimes even on my tongue, but it's completely harmless and I shrug them off. I do unfortunately still get body aches that feel a bit like my bones are throbbing, and they do still wear me down. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">BUT. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">The skull-crushing headaches are STILL gone. The tremors are STILL gone. The sleep apnea is STILL vastly improved (I think only a repeat sleep study can confirm if it's gone). </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">I brought up my other symptoms not to express discouragement, but only to remain as open and honest about how I'm feeling as I am about finances. Again, I feel I owe it to you all--the entire truth, be it financial and physical. I did say going into this if all that went away were the headaches, it would be worth it, and I have absolutely no question *it was* and *it is.* </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">Besides, this is only week five. 47 more to go. </span><br />
<br style="-webkit-font-smoothing: antialiased; background-color: white; font-family: lato, sans-serif; font-size: 16px; margin: 0px;" />
<span style="background-color: white; font-family: lato, sans-serif; font-size: 16px;">Hugs, love, and gratitude to you all.</span>LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-85684152738277592282015-02-10T12:16:00.003-08:002015-02-10T12:16:42.347-08:00The frustration and of impatience: I wanna be better nowwwwwwwww!Part 7 and most recent of my C&Ped updates from my GoFundMe page detailing my decompression surgery--and how I want to be better NOW. NOWWWWWWWW. (Still stinkin' true.)<br />
------------------------<br />
<div class="MsoNormal">
<span style="background: white; font-family: Arial, sans-serif;">Well! Three weeks post op as of yesterday. And, also as of
yesterday, I am officially medically retired and no longer an employee of
Baldwin Park Unified School District. I'm a retired teacher.<span class="apple-converted-space"> </span></span><span style="font-family: Arial, sans-serif;"><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Now, I
am back home to life and its vibrant chaos, and I find I am struggling with a
tremendous impatience (Who, ME?). I am now on the other side of this
much-anticipated surgery after an *excruciatingly* long year of referrals,
doctors, tests, results, confusion, and research pushed and ultimately strained
my determined, obstinate nature to its limits.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Now,
it is done, and remains inarguably the right thing to have done, but...now
what?<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I
wait, and I rest, two things at which I have always been plain terrible.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">As the
travel and surgical dates neared, I became fearful of this time period--this
time when I'd be briefly feeling worse than even before surgery--as my body
recovered. I came home unable to drive, nonetheless grocery shop, take the boys
to school (or pick them up), fiddle around the barn (nonetheless go for a trail
ride or take Firefly for a drive), cook, sweep the floor, do laundry. What
little independence I still clung to as my health slowly slipped backwards was
gone, and though my logical side knew and knows it is temporary, it has proven
a bit more psychologically traumatic than I anticipated. I know I will continue
to get better--how *much* remains the great mystery--but in the interim, I
wait.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">For
the record (and I see no shame or stigma in saying this), I started seeing a
psychologist about three months ago. She has been a tremendous guide, helping
me identify and contend with the many beasts beckoned by such severe,
involuntary, life-altering change in so many (she suggests, all) aspects of my
life, while also helping me recenter and think and deal with just today. Not
tomorrow or six months from now or two years from now, just...today.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I am
fortunate to have *immediate* positive results from this surgery, easing this
struggle. The years-present hand tremors have disappeared since the day after
the surgery, and the skull-crushing headaches that were becoming more and more
frequent also remain absent. Once or twice, a bit of laughter that normally
triggered hours to days-long pain seemed to start up one of the headaches;
there was this familiar pulling, slightly pressured feeling. The pain hovered
at about a 4, but then instead of building, and building, and building over the
next few hours before locking me in agony for up to three days, they faded in
under an hour. They just...went away.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I
cling to that when my patience to BE ALL BETTER NOW is stamping its foot
loudly, though admittedly oftentimes the impatience is louder than my logical
counterarguments. I have been gently, lovingly reminded by so many of you that
I have had major surgery; parts of my brain and skull were permanently removed,
fercryinoutloud, and I was in the hospital for five days. My mind may be fresh,
but my body endured a massive trauma (however planned and masterfully
administered). That I'm weak, wobbly, and easily exhausted is to be expected
and even embraced. (Ugh, just typing that makes me bristle.)<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">So, I
take a deep breath, and I contend with today. I thank my friends for rides,
meals, help with the horses, help with the boys. I rest when my body
demands--mainly because its demands are REALLY loud right now and impossible to
ignore. I also cry when I need to, wipe my face, rest in Brian's arms, cuddle
with my boys, and sing along to music that lifts my soul, no matter what the
music critic in me says about the artist or the song.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">This
is only three weeks post op, and it will be a full year--49 more weeks--before
I see the full benefit. The only way to get there is one day at a time.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">And
today, I had the strength and clarity of thought to write this. Tomorrow? Well,
tomorrow is not today. I'll deal with it, live it, when it comes.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Much
love, appreciation, and gratitude to and for all of you.</span></span><o:p></o:p></div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-84297111732178160842015-02-10T12:13:00.000-08:002015-02-10T12:13:23.467-08:00Home.<div style="border-bottom: solid windowtext 1.0pt; border: none; mso-border-bottom-alt: solid windowtext .75pt; mso-element: para-border-div; padding: 0in 0in 1.0pt 0in;">
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in;">
<span style="background: white; font-family: Arial, sans-serif;">Part 6 of my GoFundMe updates, C&Ped here. This was written four days after we returned. I aim to return later and add some of the photos described here that were shared on my GFM page.</span></div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in;">
<span style="background: white; font-family: Arial, sans-serif;">--------------------------------------------------------</span></div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in;">
<span style="background: white; font-family: Arial, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in;">
<span style="background: white; font-family: Arial, sans-serif;">Home.<span class="apple-converted-space"> </span></span><span style="font-family: Arial, sans-serif;"><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Brian
and I had our uneventful flight home Friday, woke up two groggy boys at 1am to
hug and kiss, and crawled into bed shortly after. A few short hours later, the
pair of them blasted into our bedroom to crawl in bed with us for a snuggly
reunion. (Well, bouncy, noisy, snuggly reunion.)<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Since
being home, I find myself wanting to Do! Things!, then rapidly being reminded I
am still in recovery. I function well, then need a hard nap. (Very
hard--yesterday's was nearly three hours, today's over two hours, during which
at one point I thought I was on the plane home.)<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I'm
wobbly but manage without the cane at home because there are plenty of walls,
pieces of furniture, etc. to balance me in a wobbly moment. That doesn't stop
Trent from chastising me if he doesn't see me using it--"Mom, where's your
candy cane?" he asks. Heh. So, I’m using it just a little bit more when
he’s around.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Jett
is a little weirded out by my scar, but is clearly very happy to have me home.
Now we swing in to the home routine again, with some modifications, and I’m
back to reading Harry Potter books to him at bedtime (we just started The
Prisoner of Azkaban).<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I do
wish to remain transparent about finances relating to this surgery as much as I
can, and now that we're home, the numbers are coming in so I can to share what
we know thus far. The actual medical bills likely won't get here for a few
months (oof, the waiting), but the hotel and rental car numbers are in. Please
forgive that I am rounding since I haven't gone through the receipts just yet
and am going by memory. The hotel was approximately $3200 for the 14 night
stay, managing to save a fair amount using street parking rather than the
hotel's $14/night + tip valet for the majority of the stay. We paid a hospital
discount rate of $185/night and were initially assuming the total would be
about $2700 or so, but ugh...forgot about that part with all the daily taxes
and fees. The rental car, again for 14 days, was about $1200. So, the travel
portion of this surgery totals about $4400.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">It
feels awkwardly improper for me to talk about money like this, but again, I
wish to be transparent. Once the medical bills come in, I'll be certain to post
them as well. Missing chunks of my brain or not, I'm a fighter and keen
negotiator, and will not put up with an insurance company trying to play a very
expensive shell game with us. I have already been put in contact with a health
advocacy group and they're ready, too, to bring it should it need to be
brought. ;)<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Regardless,
though, there is no question--NO question--that going cross-country to see Dr.
Bolognese and have this world expert do my operation was the right decision.
Absolutely no question, not for me or Brian, who in fact said if we're paying
for it for the next few decades, it's worth it.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">This
is where I will attempt, and no doubt fail spectacularly, to express gratitude
for the outpouring of kindness we are receiving from so many different aspects
of our lives. For one, Brian's work has set up a dinner schedule so that for
the two weeks my mom was watching the boys. *plus* the first two weeks after my
return home, we don't have to worry about cooking--which, I'm realizing, also
means I don't have to worry much about grocery shopping or kitchen cleaning. Our
first full day home, I was thinking (worrying) through my exhaustion about
lunch/dinner, and I realized--there were some leftovers from the meals in the
fridge. There was plenty for everyone, for both meals. That moment was yet
another time when the tears came, for all the best reasons.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I
wasn't sure I was up to driving the boys to school and we were tying to figure
out how that would work...and then the adult daughter of a dear friend called
me and volunteered herself. All this week she's driving the boys to school,
with me in the passenger seat, and has offered to take me to my doctor
appointment to get stitches out Thursday if I need. (I'm hoping I can manage
that brief little drive myself by then.)<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I miss
my horses so, but right now the barn is incredibly unsafe for me. The uneven
ground alone is a risk even with my cane, so leading a horse, grooming them,
mucking stalls, feeding--all of that is pretty far out of my reach at the
moment. And so--yet another friend has been lovingly tending to my horses on a
regular schedule, grooming them, bathing them, exercising them (she got Tril to
jump!), all the while sending photos and even a daily diary of their
adventures. Again, it brings tears.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I'm so
overwhelmed with gratitude, I feel a strange futility trying to express it,
because my expression is vastly disproportionate to what we are being given.
(But I still keep trying.) This leads me to a strange place: I am learning to
breathe deep and accept it. Accept the love, the friendship, the generosity, the
kindness, for exactly what they are: love, friendship, generosity, kindness.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">And...yet
once more, thank you.<span style="color: #666666;"><o:p></o:p></span></span></span></div>
</div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-37613872352743074672015-02-10T12:09:00.004-08:002015-02-10T12:10:43.692-08:00Abby-Normal-Be-Gone: description of surgery and what to expect next<div style="border-bottom: solid windowtext 1.0pt; border: none; mso-border-bottom-alt: solid windowtext .75pt; mso-element: para-border-div; padding: 0in 0in 1.0pt 0in;">
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in;">
<span style="background: white; font-family: Arial, sans-serif;">Part 5 of my updates from my GoFund Me, combining two updates in one:</span></div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in;">
<span style="background: white; font-family: Arial, sans-serif;"><br /></span></div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in;">
<span style="background: white; font-family: Arial, sans-serif;"></span></div>
<div style="border-bottom: solid windowtext 1.0pt; border: none; mso-border-bottom-alt: solid windowtext .75pt; mso-element: para-border-div; padding: 0in 0in 1.0pt 0in;">
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in;">
<span style="background: white; font-family: Arial, sans-serif;">As I can be wordy (who, ME?), I will focus
*this* update on the rest of the hospital stay and surgery. I'll write a
separate post about the week after discharge and my follow up with Dr. B.<span class="apple-converted-space"> </span></span><span style="font-family: Arial, sans-serif;"><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background: white;">I left
off with the immediate moments after surgery-the drunken haze of
semi-consciousness as I slowly came out of general anesthesia. My body,
convulsing its offense at the presence of its old surgical nemesis, so angrily
and frequently expelled stomach contents that I burned my esophagus. The nurses
were on to this certain result (took me a while to connect the dots), starting
me on Pepcid as soon as I could swallow anything. I'm still dealing with nasty
heartburn from time to time--woke me up for a good hour of OW last night, in
fact.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background: white;">I was
originally scheduled to go to ICU, but, as often happens, there was no room
ready for me. Instead, I wound up staying the night in the OR recovery room.
Brian, who hadn't seen me in nearly 7 hours, was finally allowed to come in and
visit just shy of 11pm. I do the feeling of immediate relief when he showed up.
There was my Safe Place. While I seemed completely out of it--I wasn't
particularly responsive--I knew he was there and I won't forget the consolation
just knowing he was near me. He told me Dr. B told him my brain tonsils were
thicker than imaging showed, but otherwise, everything was as expected and the
procedure held no surprises.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background: white;">Now,
normally for a primary caregiver like Brian, there are no limits to visitation,
but OR recovery is a different story. I was being constantly monitored and
hovered over by at least one, if not two, nurses, and in *this* particular wing
Bri's presence was welcomed by me, but in the way for them. They gently made it
clear to him he needed to come back tomorrow when I was in a regular room. I was
still so out of it--only waking up slightly to retch--that in hindsight, his
leaving was not stressful on me.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background: white;">However,
Bri recently told me I broke his heart when he had to leave that night (as he
was being gently shooed out the door). He told me he had to go and would be
back as soon as visiting hours allowed the next morning, and I just whimpered a
very pathetic, "Nooooooo..." "I'm sorry, honey, but I'll be
right back as soon as I can." "Nooooo..." Awww, poor Bri. As I
said above, in hindsight, it was all such a blur of time to me it didn't
matter, but I do recall in the moment wanting my Safe Place with me, but poor
Bri did, indeed, have to go. It'd been a very long day for him as well, after
all.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background: white;">When
he showed up as soon as allowed the next morning, I was still in recovery, but
eventually a regular room was made available and I was wheeled into the unit
for brain injury and stroke. I suppose brain surgery counts, too.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background: white;">I
stayed a total of 5 days, 4 nights in the hospital. Each day was a drastic change
over the day before. First 24 hours in my regular room, no way no how nuh UH
could I imagine being able to leave the hospital. But, as promised, PT Amy
showed up that first morning saying the goal today was to get me sitting up, on
my feet, and walking three steps to a chair. I looked at her like she'd
completely lost her mind. (As opposed to, well, me.) But, I did. Still woozy,
still lightheaded, still disoriented, they made sure I was well pickled in
medication before trying this challenge. I was proud to sit in that chair for
40min--then oh so eagerly hobbled back into the hospital bed. Day 2, I walked
the hall and sat in the chair for an hour. Day 3, I walked around the entire
unit, went up and down 4 stairs, and sat in the chair for 2 different 45+min
periods. Day 4, I went for multiple walks and was finally cleared for
discharge.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background: white;">Regarding
pain: The crown and back of my head was and is actually mostly numb--turns out
some nerves were severed in the process. Dr. B explained those types of nerves
will grow back in 6-12mos "like a lizard's tail." So, the good news
that brings is I have very little incision pain. What DOES hurt are the muscles
and ligaments severed during the surgical process. Still today, even the
lightest touch makes my muscles whimper. Neck, shoulders, center of my back,
jaw...CRAZY sore to the touch.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background: white;">However,
I have a high pain threshold. That isn't a brag; as much as I like to think I'm
tough, I think it's more a matter of how I've been forced to adapt. But, what
this meant was the nurses were practically scolding me for not using my pain
pump enough. Then pain management people would come in and look at me down
their noses: "You are hardly using your pain pump!" Me, mentally: Oh
yeah, that thing! :::pushes button::: Needless to say, weaning me off of it was
not an issue.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background: white;">Day 5,
I was discharged and ready to go back to the hotel and complete my recovery. No
way no how could I imagine flying cross-country--yet.<o:p></o:p></span></span></div>
</div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in;">
<br /></div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in;">
<span style="background: white; font-family: Arial, sans-serif;">Now, on to what I've been really eager to get
to and I'm sure you're most eager to hear: the immediate, noticeable effects of
the brain surgery.<span class="apple-converted-space"> </span></span><span style="font-family: Arial, sans-serif;"><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Within
hours of being back in the hotel room, I noticed something: my hand tremors
were gone. Not reduced, GONE. For about the last 2 years, I noticed my hands
would shake, particularly after movement. Walking around, hold out hands,
tremor. Initially, they came and went. I then chalked it up to being too
stressed in the rush of getting ready in the morning. Then, the tremors just
decided to stick around. Starting in February 2014, the tremor in the left hand
was consistently worse and longer. August 2014, during a tandem walk
(heel-to-toe; you see it used in DUI tests) portion of a neurological exam, my
hands started severely shaking because, as my neurologist explained, I was concentrating.
WTF?<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I
called these tremors my stupid parlor trick--it was the one thing I could do,
every time, to show people a symptom when they asked how my condition affected
me. Some days they were awful, shooting up my arms and even into my voice, but
most of the time they were just there, annoying me.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">But
when I woke up from surgery, they were gone. GONE.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I
still test myself, holding up my arms in the way that always triggered the
tremors, and nothing. Gone. This was the first thing that made me cry, and
still does.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Also
immediately gone was the sleep apnea I'd just been diagnosed with in September
2014. Heck, I've only had the CPAP 2mos. Brian repeatedly expressed stunned
surprise over this one. Yes, I still lightly snore (have ever since my babies),
but the deep choking sounds and gasping for air? Gone.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">(Gonna
be interesting explaining that to the doctor prescribing the machine and to my
insurance, who monitors my use of it.)<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I
previously described how the headaches have changed, and it is still hard to
get a good solid grasp of how much they have changed. My head hurts. A lot of
it is occasional sharp twinges, likely from peeved nerves who'd been
cut/jostled/harassed during the procedure. My eyes ache if I lie flat for long,
but well, that's adding pressure to a the swollen incision area, so that's
understandable. I feel tension at the back of my head, but that's most likely
from swelling and things being pulled back as I was stitched. But the
whole-head, vice-grip, ruin the rest of my day (if not the next few days) pain?
Not a sign of it. Not a single hint. Gone? Merciful heavens, I hope.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I'm
eager in the months ahead to see if my other neurological abnormalities change.
Dr. B told me he could only guarantee relief from the headaches; everything
else was icing on the cake. Already that includes my tremors and apnea, but I'm
curious about these:<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">*
Positive Rhomberg. If I stand with my eyes closed feet together, I cannot
balance myself and start to fall. Resultingly, walking through a dark hallway
can be a bit like being a pin ball machine--I've had to keep my hand on the
wall as I go.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">*
Positive Hoffman's reflex/Hyperreflexia. Flicking a finger a certain way causes
my thumb to vibrate, a sign of hyperactive reflexes. I have it in both hands,
but the hyperreflexia is more severe and generalized on my right side. In the
exam just before I flew out here, it was very apparent--tap the left knee,
twitch. Tap the right knee, get out of the way.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">* Loss
of temperature sensation. About a year ago, we noted this in my lower right
leg--freaked me out a bit, actually. Touch me with an ice cube or very hot
water, and I know you're touching me, but can't tell the temperature. This is a
big red flag to docs because it indicates a spinal cord (or higher)
issue--local nerves do not control temperature sensitivity. Incidentally, Bri
did test this a few days after my surgery, and not only did I feel the cold ice
cube--the cold feeling lingered for a while after. That is a very good sign. :)
As this is one symptom that tended to come and go, be better and be worse some
days, I'm eager to see if it's come and GONE.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">But
the main remaining symptom I'm most hopeful is included in that icing on my
headache-gone cake is muscle spasticity. I want to be able to exercise again,
however mildly, but I can't with my thighs seizing up after a couple stairs, or
my calves seizing up two minutes into a walk, or my forearms seizing up just
currycombing my horse. But MAN I really want to be able to move again.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Now!
Well, what now? I saw Dr. Bolognese for a post-surgical six days later and
learned the following:<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">* It
will take a year to see exactly how much benefit I gained from this surgery,
but he said I will see 90% of the changes by 6mos.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">* The
tremors present-then-absent are attributed to how my cerebellar tonsils were
wrapped around the portion of my brain stem that control the arms. He did
stress this is a very difficult location to reach; a centimeter here or there,
and he could have easily killed me. I get the impression there are few docs
that would have been willing to take on that challenge and succeed with the
level of art and skill he displayed.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">* He
also was not surprised the apnea was gone, and was hopeful for me that my
severe fatigue will alleviate as I can get some naturally restful sleep for the
first time in over a year.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">* Dr.
B closed my incision himself (good, since the plastic surgeon he sometimes uses
in more complicated cases charged a fellow patient six figures!); everything is
dissolvable except my top and bottom stitch, which my PCP can remove.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">* I
can shower/get the incision wet after 2 weeks (ugh); complete immersion, like
swimming, will be a good month or so.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">* No
lifting, reaching up, pushing anything more than 5lbs. That means grocery
shopping carts (!!), getting things down from shelves, gallons of milk...aw
crap, just realized it's grooming anything above Trilogy's shoulder too.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">* I
will start on PT immediately when I get home. Focus, like with my back
surgeries, is core strengthening and range of motion.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Now...the
big question is one he cannot answer, and I know it. Since I probably have a
connective tissue disorder--I really should get genetic testing to confirm
this--is there a risk of repeat surgeries and (what I dread) cervical fusion?
There is no knowing. All we can do is monitor my cranio-cervical junction and
watch for any sign of instability.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Here's
the bummer. Chiari is incurable. Treatable, but incurable. This surgery has
already provided massive relief and more than I'd hoped for, but I do need to
stress it almost certainly won't erase all of my long list of symptoms. Nerves
are too freakin' sensitive, and once damage occurs, it can rapidly become
permanent. Not always, but often. Heck, I have permanent nerve damage from the
massive herniations that led to my back surgeries, and I'm very fine with them
because it's more than a fair trade to what I was living with before. Painless
but annoying muscle twitches along the outside of my left leg? SURE, I'll take
that over being completely immobilized.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">So, in
the next year, we will learn what and how much remains damaged, and what
bounces back. And I can say right now, if it's just the headaches, tremors, and
apnea that are gone, that is MORE than a fair trade for everything else
sticking around. I do get the funky feeling of ants-crawling up and down my
head and arms still, but seriously...FINE. No pain, no interference with
function, just weird. The brain fog, cognitive errors, and sensory overload are
maddening and annoying, but intermittent...FINE.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I can
live with all those and their similar minor symptom companions. I can live
being different, but functional.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I can
LIVE.<span style="color: #666666;"><o:p></o:p></span></span></span></div>
</div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-82693946469047546292015-02-10T12:07:00.000-08:002015-02-10T12:07:05.077-08:00One Week Post Op: Changes are a-changingPart 4 of my updates, as C&Ped from my GoFundMe page:<br />
-----------------------------<br />
<div style="border-bottom: solid windowtext 1.0pt; border: none; mso-border-bottom-alt: solid windowtext .75pt; mso-element: para-border-div; padding: 0in 0in 1.0pt 0in;">
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in;">
<span style="background: white; font-family: Arial, sans-serif;">Okay! I think I can do this now. Turns out
recovering from brain surgery is not, you know, all TA DAH! UP AND AT THEM!<span class="apple-converted-space"> </span></span><span style="font-family: Arial, sans-serif;"><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">But! I
am doing remarkably better. Like, in all ways. Like, it's weird. I'm not sure
how to go into the details of the ALL, because I really want to share the ALL,
so I'm just gonna start. Not quite James Joyce stream-of-consciousness
happening here, but it may be a bit rambly.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Surgery
was a week ago today. That is very difficult for me to grasp for many reasons.
One, it's over. I'm on the other side. *I had brain surgery.* HAD. Not going to
have, not need, not scheduled, HAD. Two, I was discharged from the hospital
after 4 days and am semi-functional right now, 7 days after being admitted. The
days in the hospital are a bit of a blur, albeit for good reason, so the
concept that I *was* there is a bit hazy.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">The
hospital was just...amazing. Afternoon of, I was checked in, undressed, IVed,
wrist-banded, and left waiting patiently in the OR, uh, prep room? Waiting
room? Whatever you called it. This was where Brian and I waited for everyone
associated with my procedure came to introduce themselves and hand me papers to
sign while I was coherent enough to sign them. First, there was Dr. B, who was
far briefer than I'd expected--but, we *had* seen him just the day before in a
sort of presurg meet-and-greet and he'd explained everything then, so I get why
he didn't linger again. Then there was the anesthesiologist, Dr. O'Neill.
Really liked her. Very precise, focused, friendly. But I had to warn her--my
body and general anesthesia do NOT get along. Nope. Not even a tense truce.
"Okay, I'll give you x-y-z to help with nausea." Having had some
success in the past with anesthesiologists outwitting my body's desire to expel
all the things as I recover from being put under, I had hope she would be as
successful. (le sigh) Thing I didn't consider was I've never been under this
long, and never had the whole puke/dizzy/balance center of my body (brain stem)
jostled in those back, sinus, and Cesarian surgeries. But, O'Neill was great.
She explained the fascinating, if rather creepy, process of putting an
"A-line" in my wrist for the procedure. It's sort of like an arterial
IV, except nothing more than a sensor goes in. This was a way for her to monitor
my blood pressure with literally every beat of my heart, rather than the
awkwardness of the blood pressure cuff and its intermittent timing.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Now, a
parenthetical here--I only remember them using the A-line left in my left wrist
once I was in recovery (easy way to draw blood, among other things), but
judging by the fascinating zombiefication on my arms, they most decidedly put
one in both sides. And now, a week later, they look AWFUL. I mean, in a
creepy-cool, holy-crap-I-could-have-a-walk-on-spot-for-The Walking Dead awful.
So of course, I'll share pics of them later. ;) They do hurt a little,
bruised-like, but nowhere near the drama of their appearance.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Okay,
back to the cast of characters. Someone else who came along was an
"electro-physiologist." This pleasant guy explained that he was going
to be putting electrodes on my body to monitor the various nerves branching out
from delicate brain-land. Once I was out, he was switching to needles (!)
inserted on top of the nerves (!!!) so that Dr. B and all involved could very
precisely ensure that they weren't damaging/touching/jostling/pestering any of
the affected nerves branching out.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Seriously,
their attention to me and attention to detail was and is astounding.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I was
only delayed an hour or so, so I was wheeled into the OR at around 4pm. The
patient waiting in the--uh, stall?--next to me, I overheard, was having her
surgery delayed at least 2-3 hours because whatever was going on in her
assigned OR had emergency complications. My thought at the time was...well...I'd
rather be the one delayed than the REASON for the delay. That's scary stuff.
(Other Person seemed understandably disappointed, but also reasonably patient
and accepting.)<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">So I
was wheeled into the ice-cold OR and cautiously gave the place a look over.
White boards, clocks, storage cabinets, metal tables...I mean, it looked like a
highly sterile work environment. Which, uh, is exactly what it is. But I found
it oddly disconcerting that in this fairly nondescript room I was going to be
strapped down, semi-upright, and have my head cut into for the next 6 hours or
so.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Then
Dr. O'Neill gave me happy sedative juice and I was fiiiiiine with everything.
More people introduced themselves (love that they do that)--Dr. B's nurse,
assistant, I don't even remember who--and there were lots of grins and warm
faces. Dr. B said hello and, uh, other things I don't recall because then I
heard Dr. O'Neill say "Okay, I'm going to help you sleep now," and
that was IT.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I woke
up in that awful haze of post-general anesthesia semi-awareness and general
misery. This is actually what I'd been most nervous about--the immediate
recovery. My body, again, HATES anesthesia and punishes me severely for its
use. But um--I ain't going without it, so deal, body.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I
don't remember any "OPEN YOUR EYES LAURA. WAKE UP YOU JUST HAD
SURGERY," like I've experienced in my back surgeries (that nurse ranks as
my least fav ever in post op)--just moaning, groaning, and hurting. My head?
No, surprisingly. It was more or less numb. What hurt like crap was my neck
muscles, my left hip, and my left elbow. (Turns out, that has to do with how
I'd been strapped down.)<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">And
then, the vomiting came. And returned. And returned. And returned. And...yeah.
I have NO idea how many times it was, but I just have a vague memory of feeling
not barfy for a few minutes, then barfy, then repeat. Over and over and over
and over again, for hours. Sweet nurses gently wiping my mouth and bringing
another little pink barf tub. I heard the anesthesiologist (or...uh...some
female voice off to my right) at one point saying, "Wow. She is REALLY
sensitive to anesthesia." Oh, indeed I am. They fired everything they had
at me--I think it was at least 3 anti-nausea meds, plus something for my crazy
dizziness/lightheadedness--and still the violent and oh so frequent retching
came. It got to where it hurt my throat, and now a week later, I've realized
this is why they prescribed Pepcid for me--I'd burned my esophagus.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Now, I
do want to share one immediate change in my symptoms that I noticed through the
hazy anguish. Vomiting, like coughing, laughing, sneezing, and the like,
increases intercranial pressure. It has, in the past, greatly magnified my
Chiari headaches and been one of many triggers that make the next few
hours--and frequently, days--a misery of increasing pain and pressure that
leaves me in varying degrees of agony for varying lengths of time. THIS time,
just a few short hours after being sewn up, well yes...it hurt. Of course. A
chunk of my skull was cut out, my dura opened, my brain cut into. BUT. Even
*then*, the sharp pain that came with the retching almost immediately went
away. It was like 5 seconds of OW OW OW MY HEAD and then...oh, okay, better
now. Every time, every convulsion. That was the first sign something Big Was
Different, and it was beautiful (if, uh, ugly).<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Okay.
This is where my head and eyes start to hurt, their way of saying "Yo,
enough. Rest NOW,", but there is more I do wish to tell you. My follow up
with Dr. B yesterday was amazing, and already, I am seeing borderline
miraculous changes--maybe not "borderline." So I shall rest--during a
lovely drive with Bri around Long Island--and be back with more later.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Much,
much, MUCH love to you all. More than I can ever express, but I'm going
to at least try: I love you.<span style="color: #666666;"><o:p></o:p></span></span></span></div>
</div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-69726901090468772102015-02-10T12:05:00.001-08:002015-02-10T12:05:17.561-08:00It Is Over. Hubby's just-after-surgery update<div style="border-bottom: solid windowtext 1.0pt; border: none; mso-border-bottom-alt: solid windowtext .75pt; mso-element: para-border-div; padding: 0in 0in 1.0pt 0in;">
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in; tab-stops: 291.75pt;">
<span style="background: white; color: #666666; font-family: "Arial","sans-serif";">Part 3 of my C&P from my GoFundMe page updates. This was written the night of my surgery on January 13, 2015, by my wonderful husband.</span></div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in; tab-stops: 291.75pt;">
<span style="background: white; color: #666666; font-family: "Arial","sans-serif";">----------------------------------------------</span></div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in; tab-stops: 291.75pt;">
<span style="background: white; color: #666666; font-family: "Arial","sans-serif";">Long
Island. Long day.<span class="apple-converted-space"> </span> </span></div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in; tab-stops: 291.75pt;">
<span style="background: white; color: #666666; font-family: "Arial","sans-serif";"> </span><span style="color: #666666; font-family: "Arial","sans-serif";"><br />
<span style="background: white;">Lest
anyone think that Laura's made an incredibly quick recovery since surgery, I
should probably start out by noting that this her husband, Brian. Hi there.<span class="apple-converted-space"> </span></span></span></div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in; tab-stops: 291.75pt;">
<span style="color: #666666; font-family: "Arial","sans-serif";"><br style="-webkit-font-smoothing: antialiased;" />
<span style="background: white;">Now
that I think about it, I probably shouldn't start out noting that. I probably
should have led with the part where I tell you the surgery is complete and went
well. Ah well. Now you know what manner of writing to expect with me instead of
her.<span class="apple-converted-space"> </span></span></span></div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in; tab-stops: 291.75pt;">
<span style="color: #666666; font-family: "Arial","sans-serif";"><br style="-webkit-font-smoothing: antialiased;" />
<span style="background: white;">At any
rate, we checked Laura into the hospital around 1:00, then did our best impression
of a couple who was waiting patiently for the next several hours. Closer to
4:00 than the scheduled 3:00, we said our goodbyes and they wheeled her in. She
asked that they do a wheelie into the OR, but her nurse seemed a little uptight
and did not comply. (No thank-you cookies for you, Nurse No-Wheelie.)<span class="apple-converted-space"> </span></span></span></div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in; tab-stops: 291.75pt;">
<span style="color: #666666; font-family: "Arial","sans-serif";"><br style="-webkit-font-smoothing: antialiased;" />
<span style="background: white;">Then
there was some waiting. Several hours worth, actually. Sometime around 9:30, I
spied a man with a jacket, bags on his shoulders, sporting an air of
it's-late-I'm-tired-and-it's-time-to-go-home. I immediately recognized him as
Dr. B. With his usual brevity, he told me everything went well. The tonsils
(the part that he removed) were a little thicker than expected, but that wasn't
a problem. The pressure of the CSF, the size of the herniation, the pressure on
the brainstem were all as expected and were dealt with as we had discussed.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<span style="background: white;">It
took quite a while before they allowed me to see her in the recovery room as
Laura was a while in coming out of anesthesia and then quite nauseous as she
did. In fact, she was pretty miserable when I was finally able to see her.
There was vomiting and there was pain (and medication for both, neither of
which had yet to take effect before I left). There was also very little
lucidity, but hopefully enough to understand (as I told her repeatedly) that
things had gone well. I was told a couple times that there wasn't anything to
do for her now except to let her sleep. It felt like those awkward hints that
one sees in the movies or on TV at the end of a date, where the person doing
the hinting doesn't want to break the other person's heart (at least not all at
once) and tell the other person it's time to go. I came out and asked how long
I was allowed to be there. Nurse Hints-A-Lot said people typically visit the
recovery area only for short periods. She then gave me a card with the phone
number of the unit and her name and said I can call anytime and check on her.
She and the other nurses seemed caring, friendly, and such, even if unwilling
to tell me to leave. Feeling that she was in good hands, I said goodbye to
Laura and left.<span class="apple-converted-space"> </span></span></span></div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in; tab-stops: 291.75pt;">
<span style="color: #666666; font-family: "Arial","sans-serif";"><br style="-webkit-font-smoothing: antialiased;" />
<span style="background: white;">We're
supposed to see Dr. B. again tomorrow, so perhaps I'll have more info then. In
the meantime, thank you. Thank you all. You've all been ridiculously
supportive. And I'm tired. Goodnight.<span class="apple-converted-space"> </span><o:p></o:p></span></span></div>
</div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-90990951500179060882015-02-10T12:03:00.000-08:002015-02-10T12:03:10.584-08:00Tomorrow is my New Year--New Life!<div style="border-bottom: solid windowtext 1.0pt; border: none; mso-border-bottom-alt: solid windowtext .75pt; mso-element: para-border-div; padding: 0in 0in 1.0pt 0in;">
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in;">
<span style="background: white; font-family: Arial, sans-serif;">Part two of my C&P of updates from my GoFundMe page to here. This was written the day before my surgery.</span></div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in;">
<span style="background: white; font-family: Arial, sans-serif;">----------------------------------------------------------------</span></div>
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in;">
<span style="background: white; font-family: Arial, sans-serif;">Well, tomorrow is the day. My new year.<span class="apple-converted-space"> </span></span><span style="font-family: Arial, sans-serif;"><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I'm
ready. I'm surprisingly not anxious; it seems most of the anxiety was in the
week prior and in particular the days before flying. Now, I'm ready to just go
forward and get this done. This has been a long, lonnnnnnng road...I'm eager to
be at a junction and on to whatever is next.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I
realized that with surgery tomorrow, I was not going to be permitted to eat or
drink anything after midnight (turns out it's even worse--11pm! Boo!). Then I
realized...if surgery is at 3pm, I'm going 16 hours without food or drink. And
I'm certainly eating nothing after surgery--so I will be eating nothing
tomorrow. Well! We must EAT! today! We went out for amazing New York bagels
today. I had a multigrain with cream cheese, lox, and tomato. YUM. (And right
now, I'm having cookies and milk in bed.)<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Also,
knowing how dehydrated I'm going to feel, I have been guzzling 16oz bottles of
water--I think I'm up to 5 or 6 now. I remember from my 100 degree summer horse
showing days how important it is to hydrate not the day of the event, but the
day before. I figure if I'm thoroughly hydrated today, it will make tomorrow
less miserable.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Presurgical
testing was today. Oof. It was scheduled for 12pm. I didn't actually begin
testing until 2:30pm. Now, remember how I was hydrating myself? Yeah, my
bladder was reminding me. But, I figured someone was going to have me pee in a
cup, so I held it. That got a wee bit uncomfortable. Then when the nurse
brought me in, I mentioned wanting to get the cup and get it over with because
I had to go, and she said, "Oh, we don't need that if you're not
symptomatic for a UTI." :::facepalm::: Looking at my face, she added,
"The bathroom is around the corner!" I bolted.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Thankfully
my presurgical tests done at home helped cut short the exam time--no need for
the EKG or chest x-ray. Just some blood drawn as apparently, my pregnancy test
is outdated. Yeah, THAT'S what I need right now.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Anyway,
there was very little in a way of testing and far, far more in the way of
history and intake. All my conditions, medications, allergies, symptoms, pain
severity, etc. It got awkward when she asks how much I can walk in a day, on
average. Um...there is no average with me. There's today, there's yesterday,
there's tomorrow, there's the next day. I also don't get short of breath or in
pain; that's not what limits my walking. I get legs that turn to lead and calf
muscles that feel like they fill with marbles. Thanks though to my Fitbit, I
know I average about 7000-8000 steps on my not crappy days, so that's what I
went with. Then she asked about my headaches. Would I describe them as sharp,
dull, throbbing, piercing, pressure...? Umm...all of the above. It depends on
the day. Today: mild and dull. Yesterday: pressure behind my ears and sharp
pain coming out my eyes. When asked to describe how the pain typically radiates
and I described how it starts at the base of my skull like a dull, intense
squeeze then shoots through my eyes, she said something along the lines of,
"How do you live like this?" Shrug. Today wasn't bad (although I
sneezed in the middle of typing this and now my head is cranky--hopefully it
calms down and doesn't move into angry), and yesterday, Tramadol helped bring
the pain down a couple notches so I could still enjoy my husband's company. I
live like this because it's the life I'm given. Not that I'm thrilled with
it--I do aim to make a rather big change tomorrow.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">After
testing, we swung by Dr. B's office to pick up a form. While we were there, I
asked if we could maybe say hi and meet in person--everything we'd done so far
was over Skype. Sure enough, they welcomed me to wait the twenty minutes or so
for him to finish with his patient and then brought us in to an examining room
to meet up with him. When he came in, he was very friendly, very funny, and
very warm--there was no feeling like we were a pain in his behind for adding an
additional stop to the end of his day. We expressed mutual pleasure for seeing
each other in the flesh, and he joked and turned around to show me he did, in
fact, have a back side.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Then
he went over the nitty-gritty of tomorrow. I'm to show up two hours earlier
than the surgical time of 3pm, but it will be about 90 minutes from that point
before they begin to cut. The surgery itself is about 4-5 hours, so, allowing
for the prep time following check in, the earliest everything will be Done is
8:30-9:30pm EST (5:30-6:30pm PST). Now, Dr. B emphasized that surgery can run
late if the preceding procedures in that OR run over--he joked he's not going
to go in and kick everyone out--so it may be much later. I understood
(especially considering my experience with presurgical testing). He then made
an amusing comparison. You have to hear this with a thick Italian accent and
picture it said with a smile and a twinkle in his eye. "You know how they
say the cows, when they are going to slaughter, if they are stressed they don't
taste good? It is important that you do not stress because the tissues will not
heal as well after." So, moo.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">He
said that the immediately after surgery, he wants me to be moving my neck side
to side, and the day after surgery, he wants me spending 45min in a chair and
walking up and down the hallway. It is very important, he said, that I be up
and moving so the muscles do not heal while seized and in spasm. Drugs, you
will be my friend.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Oh,
speaking of, funny thing--the presurgical nurse repeatedly said I need to use
my pain pump when the pain is mild. "Do not wait for it to get
severe." This is incredibly novel to me--I have lived with mild pain for
ages. I've pushed through it and dealt with it; mild pain is my good day. The
idea of muting it at that point is new and I have been repeating her
instructions to myself so it sticks in my memory. I understand how awful bad
can be, so I'm happy to make mild silent as well. "If you're asleep,
you're not in pain." Sounds good to me!<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I will
be in ICU overnight then moved to the main floor by noon on Wednesday. Then I
should be in the hospital another 3-4 nights.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Brian
will post updates on his and my Facebook pages and here as well tomorrow. I
would ask that everyone please be patient and wait for him to post the update
so he's not inundated with wonderful, loving, concerned requests. :) I should
be able to at least post a thumbs-up 24 hours or so after surgery.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">So! I
shall see you on the other side! Thank you for the many, many comments, notes,
prayers, calls, texts, photos, everything. Y'all are the awesome, and I love
you. Here's to my new year and new life!<span class="apple-converted-space"> </span><span style="color: #666666;"><o:p></o:p></span></span></span></div>
</div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-13380107124861747002015-02-10T11:59:00.001-08:002015-02-10T12:00:25.679-08:00Journey to NYSo much has happened. So, so much has happened. Much of it was documented on my GoFundMe page, but it seems one cannot scroll back and read prior updates--I felt my blog here would be a great location to transition my story. But first, I am going to C&P what has happened, starting with our arrival in New York:<br />
----------------<br />
<div style="border-bottom: solid windowtext 1.0pt; border: none; mso-border-bottom-alt: solid windowtext .75pt; mso-element: para-border-div; padding: 0in 0in 1.0pt 0in;">
<div class="MsoNormal" style="border: none; mso-border-between: .75pt solid windowtext; mso-border-bottom-alt: solid windowtext .75pt; mso-padding-alt: 0in 0in 1.0pt 0in; mso-padding-between: 1.0pt; padding: 0in;">
<span style="background: white; font-family: Arial, sans-serif;">Well, we're here! New York, Britvecs. Britvecs,
New York.<span class="apple-converted-space"> </span></span><span style="font-family: Arial, sans-serif;"><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I'm a
bit jet-lagged and tired overall, but wanted to update that we've made it here
safely. Mercifully, the cabin pressure I had been dreading turned out to be
mostly a non-issue. I felt pressure behind my ears and eyes more than anything,
although as the flight went on I felt some mild pain. Interestingly, take off
didn't bother me nearly as much as landing, although again, it wasn't bad.
(Pilot-friend told later told me descent is much faster and the pressure
changes more sudden; perhaps that's why.) I just noticed the pressure and pain
were more significant, tiptoeing into the "Hey, this is annoying"
territory but thankfully not going any further.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Coolest
thing about the flight? A classmate of mine from high school was one of the
pilots! Scott had already offered us his buddy passes so we could fly for next
to nothing, and then when he checked his schedule he realized he was piloting a
LAX-JFK flight on the day we were planning to leave. There were enough empty
seats on the flight that we were able to get on it. Whoo hoo! We were given a
row to ourselves, which really helped us stretch out in the cramped conditions.
I was even able to lie down halfway and rest when I needed to.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Mega-bonus
for plane-loving Brian was Scott gave us a tour of the cockpit, even letting
Bri sit in the pilot's seat for a bit. Bri, Captain Stoic, was outright giddy
(well, in a Brian sort of way). I was so thrilled for him. I'll attach photos
of him in his seat at the end of this update.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">My
head is tender today, but not bad, so we have made it the goal to go to at
least one sightseeing spot before coming back to rest in the hotel. Yesterday
was a long day and pushing it is unwise for me--so I shall not push my limits.
I'll just likely brush up against them. ;)<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">One
thing I really, really want to do is visit the two hospitals my then-fifth
graders wrote letters to immediately after 9/11. They were addressed to injured
firefighters and police as well as to the doctors assisting them. One of the
hospitals wrote the class back and said they were making a display of all the
letters children of the United States were sending, and ever since, I've wanted
to be able to see them. I know it's a shot in the dark, but I'll regret it if I
don't at least try.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I
confess I have had cold feet as the surgery date approaches, doubting myself,
doubting everything. But I am so exceedingly grateful for the Chiari
community--one, who had surgery just four days ago, called me and was a
tremendous encouragement. She said, repeatedly, that I was going to feel so
much better. I can't imagine it--although, admittedly, part of me is afraid to
imagine it because I fear being let down. But there is so much encouragement
coming in, from friends, family, other patients of Dr. B, I'm becoming
cautiously hopeful.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Another
former patient of Dr. B's is picking us up in a few to take us into the city
(wonderful to have someone who knows the city help us navigate it!), so you can
see, the Chiari community is taking good care of us. <3<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Thank
you all once again for your continued support, in all its forms: prayers,
donations, scheduling meals delivered to our home so my mother won't need to
worry about cooking, providing meal giftcards for us while we're here in NY,
and all the encouraging words via text, email, Facebook...the outpouring is
absolutely beautiful.<span class="apple-converted-space"> </span></span><br style="-webkit-font-smoothing: antialiased;" />
<br style="-webkit-font-smoothing: antialiased;" />
<span style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">Much
gratitude, much love.<span style="color: #666666;"><o:p></o:p></span></span></span></div>
</div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-85695913520757293502014-12-01T19:48:00.000-08:002014-12-01T19:51:42.635-08:00GoFundMe, Friends, Family, Gratitude I have amazing friends.<br />
<br />
One of them, Kristy Boxberger, set up a GoFundMe page for me so others could hear of my story, share, and donate if they were able. I wanted to be sure and share it here, just in case, you know, stuff.<br />
<br />
<a href="http://www.gofundme.com/hh0874" target="_blank">Here is a link to the GoFundMe page she set up for me.</a><br />
<br />
Y'all are amazing. Seriously. "Thanks" does not begin to describe the depth of my gratitude.<br />
<br />
And now, speaking of giving thanks, here are a couple of pics from Thanksgiving Day 2014. These definitely capture the spirit of Britvec Normal.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhStYn9ajMryPN9A5emiflp0clQAvCHUxXlqYSmfiX55eW6NOM6Qa3EvMyIm0eClHVe0o3dEdC711xNmv9QqHSRjbfF31iSSJN1MyVBmdXi2vJ2IDhsuyUKyViCF70Gb5nG7VGVyoSYG6Y/s1600/Thanksgiving+1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhStYn9ajMryPN9A5emiflp0clQAvCHUxXlqYSmfiX55eW6NOM6Qa3EvMyIm0eClHVe0o3dEdC711xNmv9QqHSRjbfF31iSSJN1MyVBmdXi2vJ2IDhsuyUKyViCF70Gb5nG7VGVyoSYG6Y/s1600/Thanksgiving+1.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Just about the only kind of selfie I make, because the photobombers are so cute</i></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpfUu65B0KQ-ConL5MKKEK2526CsXeYyapa7BctnO78HAro75oYBK2nD6pHdIUlysVC4YgpOpcPHVZLDL4Ag2JhXzTqjaFYVt4YLs40sNBA2bPv4rilf-hgQvKwPcweodywhDSybDbhi4/s1600/Thanksgiving+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpfUu65B0KQ-ConL5MKKEK2526CsXeYyapa7BctnO78HAro75oYBK2nD6pHdIUlysVC4YgpOpcPHVZLDL4Ag2JhXzTqjaFYVt4YLs40sNBA2bPv4rilf-hgQvKwPcweodywhDSybDbhi4/s1600/Thanksgiving+2.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>The beach is a pretty awesome place for Thanksgiving morning...even if seconds after hubby took this pic, big bro came up to us complaining little bro was throwing sand. Again. </i></td></tr>
</tbody></table>
I swear, hubby smiles. We joke he's like Agent Mulder--this exchange from the X-Files movie is the <i>only </i>thing I remember about it because it <i>perfectly </i>describes stonefaced (but handsomely so) hubby: "You were scared! You had your scared face!" "What?! This is my scared face!" :::completely expressionless::: "<b>THAT'S IT!</b> That's the face you made!"<br />
<div>
<br /></div>
<div>
I feel awkward and embarrassed sharing this, but realized if this were a good friend of mine, I'd be sharing the GoFundMe link to support them. So...I'm being a good friend to myself.<br />
<div>
<br /></div>
<div>
And so, uh...here's a picture of my eldest drying off ever-tolerant and patient Firefly yesterday before putting her rain sheet on, because, <b>CUTE</b>.</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDgdS9dAeybH-JB4OJUDGzql9Lpqc_B9rPRJ4S798LNME4fQhTG9kgcVCfZK4ROeq1sXnwXTOmGTq07VVarVDnOV89mE3Upo1QPMWd9gA9jUdbhxxNXzzG0h76daxRx7kNScvJNa-l2nQ/s1600/10730201_10205627261500308_1400710281405003623_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDgdS9dAeybH-JB4OJUDGzql9Lpqc_B9rPRJ4S798LNME4fQhTG9kgcVCfZK4ROeq1sXnwXTOmGTq07VVarVDnOV89mE3Upo1QPMWd9gA9jUdbhxxNXzzG0h76daxRx7kNScvJNa-l2nQ/s1600/10730201_10205627261500308_1400710281405003623_n.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>He said to show this to his dad, saying, "Look! He found a green horse!" Thus his facial expression. Firefly's expression says, "Whatever. Just feed me when you're done."</i></td></tr>
</tbody></table>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
</div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-74506471439000852922014-11-21T17:26:00.002-08:002014-11-21T21:58:55.778-08:00Relax, it's not brain surgery! Oh wait, yes it is...<div class="separator" style="clear: both; text-align: left;">
Me and my Abby Normal brain.</div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/yH97lImrr0Q?feature=player_embedded' frameborder='0'></iframe></div>
<br />
<span style="font-family: inherit;">I had my follow up with Dr. Bolognese on Friday, November 14, via telemedicine (Skype). During that appointment, he referred to this image of my cine MRI:</span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2YHflQ588C3L5FnQgBGFKYd_eUwxIaFnC0Vc3MdsJ9QbFcAjFADIUqPdkQ_1Yd9TbINQ8FjYis7Zt4ybzaSqSrmy6XqmvUHEwCVNhmF-LwPqRUov_FKKe8diULwN0AL8FZapWPXLEV7g/s1600/CINE+MRI+8.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2YHflQ588C3L5FnQgBGFKYd_eUwxIaFnC0Vc3MdsJ9QbFcAjFADIUqPdkQ_1Yd9TbINQ8FjYis7Zt4ybzaSqSrmy6XqmvUHEwCVNhmF-LwPqRUov_FKKe8diULwN0AL8FZapWPXLEV7g/s1600/CINE+MRI+8.JPG" height="400" width="394" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i><span style="font-family: inherit; font-size: x-small;">Braaaaiiins</span></i></td></tr>
</tbody></table>
<span style="font-family: inherit;">Um...pretend this is animated, because it's supposed to be, but a screen capture is all I could manage. Cine MRI=cinematic MRI; it shows the pulsation of cerebral spinal fluid, not just the anatomy. He said we need to see two columns of cerebral spinal fluid (CSF) pulsating on either side of the spinal cord. (CSF it the light colored lines outlining my spine, going up into my skull.) What we see is one line on the left (anterior) clearly going up into my brain, and the one on the right (posterior) going up and...stopping. Where we should see CSF, it's black, indicating a significant blockage leaving that part of the skull starved of the flow of spinal fluid. My brain herniation is plugging the flow of CSF at the base of my skull like a cork in a wine bottle, he said. While the size of my herniation may be a cause of debate for docs, he explained <i>any</i> doctor with <i>any </i>knowledge of Chiari would look at this MRI and say, without question, I have a problematic Chiari malformation--not just an "incidental finding" as some may have said. Or, in fact, as some did say.</span><br />
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">On top of this, my headaches are getting worse. More frequent, more severe, more constant. Truly, I have a near-constant headache now, often just a dull ache, but not uncommonly a throbbing, inescapable pain. The one I have now is enough that it makes it harder to type, but I'm pushing through, because it's what I've done for so long. One learns how to live with pain when it cannot be fought. I'm grateful this one allows me to function, if in its own annoying interfering way. Jerk.</span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">Starting about two months ago, the headaches started getting so severe when I lie down on my back, adding pressure to the back of my head, that my eyes started going bloodshot. The process of getting cine MRI pictured above, in fact, was absolutely torturous. They were unable to get the images they wanted, so it took three attempts and 45min instead of the 15min they had casually said it would require before beginning the imaging session. The pain in the back of my head grew intense, and unable to move during the test and relieve the pain and pressure, it swallowed my head whole, bringing nausea and severe eye pain with it. Finally finished, I was dizzy a bit when standing but hobbled to my changing room, grateful to be upright again. It was when I was using the mirror to put my earrings back on (because you do NOT want to wear metal in an MRI--have you seen the video going around Facebook?) that I was taken aback by my eyes. They were red, from the outside corner to the iris. I continued changing, and the eye color improved as I was upright, but I grabbed my phone to document this bizarre visual. It's a bit tricky getting a picture of one's eyeball with an iPhone, but I managed a few that somewhat captured the bizarre look. </span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7-gjC2bs2_mDfZrXEMkLpobdI7o4cIXSG001IlbsyDu_2qtK_rF1ULbvOYLGw6PfC5dkKo_by9Ai46G8WYGWgZ9PXVhmt4hEkztXdZeNV1B9yC2MKqPxMOwQrlqsBxTd9bsNuH9aTgds/s1600/IMG_9590.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7-gjC2bs2_mDfZrXEMkLpobdI7o4cIXSG001IlbsyDu_2qtK_rF1ULbvOYLGw6PfC5dkKo_by9Ai46G8WYGWgZ9PXVhmt4hEkztXdZeNV1B9yC2MKqPxMOwQrlqsBxTd9bsNuH9aTgds/s1600/IMG_9590.JPG" height="300" width="400" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i><span style="font-family: inherit; font-size: x-small;">My, what pretty eyes you...ewww, never mind</span></i></td></tr>
</tbody></table>
<span style="font-family: inherit;"> </span><span style="font-family: inherit;">It repeated with the nasty headache I had after my son's Trunk of Treat Boy Scout event.</span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlOx9Qfwz9n_sDfgNZLgKiNXYCj_nJyRBY29GyfQLtJIotsnKgQY1HeGWdF9S8uS4xEO3Ch49lxTNO1Opuk36s3yyqhbdS7cNKmjshWdrudjM8t6zFljLL9hyYfLQTNnJlMYaI2FUaPYk/s1600/IMG_0129.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlOx9Qfwz9n_sDfgNZLgKiNXYCj_nJyRBY29GyfQLtJIotsnKgQY1HeGWdF9S8uS4xEO3Ch49lxTNO1Opuk36s3yyqhbdS7cNKmjshWdrudjM8t6zFljLL9hyYfLQTNnJlMYaI2FUaPYk/s1600/IMG_0129.JPG" height="300" width="400" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i><span style="font-family: inherit; font-size: x-small;">Appropriate for Halloween, I suppose</span></i></td></tr>
</tbody></table>
<span style="font-family: inherit;">And really, has repeated to where it's a near daily occurrence--like my headaches, it varies in severity. Dude, the body is WEIRD.</span><br />
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">Dr. B reassured (rather unnecessarily, as I wasn't concerned about it as much as I was curious) that the redness isn't due to a hemorrhage or anything like that, but are turning red like this as the nerves react to the pressure. He said it was a bit like going pale when feeling faint.</span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">On top of all <i>this,</i> I was diagnosed with sleep apnea back in September and fitted for a CPAP machine. That's just...weird. Apnea? Huh? I've <i>never </i>had an issue with that, and I don't fit the typical profile. And yet, around February or so, my husband nudged me awake for the first time in our 13+ years sharing a bed to alert me that I wasn't breathing. Whuh?</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Turns out, both central apnea--where the compressed brain stem stops sending the signal to breathe--and obstructive apnea are extremely common in Chiari. A study showed 73% of adult Chiari patients had one type of apnea or the other. (The good news? 90% of that group saw their apnea disappear after decompression surgery.) Thankfully, my type of apnea is obstructive, where the muscles in the back of my throat relax and collapse over my windpipe; while not fun, it's not as lethal as central apnea. They aren't sure why this type of apnea is so common in Chiari patients, but one theory is the compressed cranial nerves interfere with the signals to the throat, causes the muscles to go lax. This is also why some patients have issues swallowing, which I haven't noticed being an issue. </span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">All of these recent additions to my body's par-tay--the clear blockage on the cine MRI, the increased severity and frequency of the headaches, the eyes going bloodshot with the headaches, the sleep apnea--resulted in Dr. Bolognese offering me surgery. </span></div>
<div>
<span style="font-family: inherit;"><i><br /></i></span></div>
<div>
<span style="font-family: inherit;"><i>Brain </i>surgery.</span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDmEzHQpBZTX3uVkAIMlTum9rhmL-24koHhkaRblBw51MSmpaCP_kevvzgSZYYE7JSvY21unev6m3fi-4FamZoZEiDZej3DD_duV6Jir9Oc8YUmhtAIs8cyy6fKenoeBRsWv1zyOvCOtI/s1600/holy+crap.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDmEzHQpBZTX3uVkAIMlTum9rhmL-24koHhkaRblBw51MSmpaCP_kevvzgSZYYE7JSvY21unev6m3fi-4FamZoZEiDZej3DD_duV6Jir9Oc8YUmhtAIs8cyy6fKenoeBRsWv1zyOvCOtI/s1600/holy+crap.jpg" height="373" width="400" /></span></a></div>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: inherit;"><br /></span></div>
<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: inherit;"><span style="background-color: white; color: #333333;">He cannot guarantee it will help all of my symptoms, as neurological issues are bizarre and unpredictable. But, he is confident it will greatly reduce my severe headaches, eye pain, and the feeling of pressure at the base of my skull. The dizziness, balance issues, limb tingling and numbness, tremors, hyperreflexia, joint and body aches, heart palpitations, vision issues, fatigue...a reduction (or erasure) of these would just be icing on the cake.</span><br style="background-color: white; color: #333333;" /><br style="background-color: white; color: #333333;" /><span style="background-color: white; color: #333333;">But still... EEK. </span><span style="background-color: white; color: #333333;">Especially considering the procedure he recommends involves </span><i style="background-color: white; color: #333333;">cutting out </i><span style="background-color: white; color: #333333;">the herniated portion of the brain. He said it has not function, </span><b style="background-color: white; color: #333333;">BUT STILL!</b><br style="background-color: white; color: #333333;" /><br style="background-color: white; color: #333333;" /><span style="background-color: white; color: #333333;">I asked Dr. B flat out about riding my horse, which I haven't done for a few months due to muscle weakness, numbness, spasticity, and balance issues. He recommended the same for both pre and post surgery for me--leisurely, walking trail rides only. (And that's him knowing I'm a somewhat skilled rider--otherwise he would tell a nonrider not to get on at all). </span><span style="background-color: white; color: #333333;"> I cannot risk head injury or being bounced around much. This is both terrific news--I can get on him again!--and heartbreaking. I'm still processing the reality that brain surgery is in my future--this is just another piece that's terribly hard to swallow. Is it really...never again?</span><br style="background-color: white; color: #333333;" /><br style="background-color: white; color: #333333;" /><span style="background-color: white; color: #333333;">There's no knowing. For now, I'm grateful just to be able to get back on him, when I have the strength.</span></span></div>
<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: inherit;"><span style="background-color: white; color: #333333;"><br /></span></span></div>
<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: inherit;"><span style="background-color: white; color: #333333;">So I did.</span></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-5Dj-Mw21b15GYhiG-YpTUB7ULsRu0KhXQ6wNS-Ln_-TU-5_IQzu0LGjqsVQuI6lVyo6_jsaTMgHJ7F9xVbjAzy5Xr4qg8IVO-iSI-SZplBuSZ23vHNdC1E-idKNfWK32wqnf7kCgHHM/s1600/barefoot+saddle+1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-5Dj-Mw21b15GYhiG-YpTUB7ULsRu0KhXQ6wNS-Ln_-TU-5_IQzu0LGjqsVQuI6lVyo6_jsaTMgHJ7F9xVbjAzy5Xr4qg8IVO-iSI-SZplBuSZ23vHNdC1E-idKNfWK32wqnf7kCgHHM/s1600/barefoot+saddle+1.jpg" height="640" width="468" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>I was still smiling on the way home</i></td></tr>
</tbody></table>
I have a friend's Barefoot Cheyanne saddle out on trial, and so far, I love it. It's light, comfortable, and secure, and yet I still can feel him underneath me. It's perfect for our 20 minutes of walking only.<br />
<div>
<br /></div>
<div>
Tril also looks adorable in it.</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlQYmHAWw9uWHrATMY7WxbidW7HcDLxkwq0Zs0c__xKg3cjvvdKpxq7dJzC0QRZ2egXUQ4oY4pMUgv_CzsJSjoKjSnZ1Kic4kVdMsjwYQU9XuuGNqPr7OM96bmM90eMzWT_deE8nE_46o/s1600/barefoot+saddle+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlQYmHAWw9uWHrATMY7WxbidW7HcDLxkwq0Zs0c__xKg3cjvvdKpxq7dJzC0QRZ2egXUQ4oY4pMUgv_CzsJSjoKjSnZ1Kic4kVdMsjwYQU9XuuGNqPr7OM96bmM90eMzWT_deE8nE_46o/s1600/barefoot+saddle+2.jpg" height="305" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>He looks adorable in everything, actually</i></td></tr>
</tbody></table>
Monday, shit got real when Bolognese's surgical coordinator called to schedule my decompression surgery. She still needs to confirm with the hospital to make sure the OR is available that day at the hospital, but right now, my surgery is set for January 13, 2015. In New York.<br />
<div>
<br /></div>
<div>
Eep.</div>
<div>
<br /></div>
<div>
Our initial plan was to bring the boys along, but the more we think about this, the more we are rethinking that. For one thing, there's the length of stay. I need to be at the hospital on January 12 for presurgical testing, and I do <i>not</i> want to fly in on the 11th to dive straight into that. So, we'll arrive the 10th, maybe, then I have surgery the 13th, then I have a 4-5 day night hospital stay, and then I won't be cleared to travel for at least two days after discharge--which means we'll be in New York at least 10 days. A weeeeee bit rough on and with young boys.</div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg36qTAZSBIEwub1UT1FxdNKa-KfAukh7XNqQH24HBJ0u_weAuXD8V5q4wZK7BSqdh4_izJ7ShRST-MFCsZhhbI2eMUzl8_cTXKFeSEufZ3zN6oxgnsUDBoqQDYcAyYLSg8cc0AkndIooQ/s1600/new+york+snow.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg36qTAZSBIEwub1UT1FxdNKa-KfAukh7XNqQH24HBJ0u_weAuXD8V5q4wZK7BSqdh4_izJ7ShRST-MFCsZhhbI2eMUzl8_cTXKFeSEufZ3zN6oxgnsUDBoqQDYcAyYLSg8cc0AkndIooQ/s1600/new+york+snow.jpg" height="266" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>New York--in freakin' <b>January. </b>Yaaaaaaaay</i></td></tr>
</tbody></table>
<div>
I'm trying not to be overwhelmed by everything. The flight, the traveling itself, finding accommodations, the animal care, the boys' care (whether they're with us or not), the insurance headaches, the money--holy crap, the money--and lest I forget, the surgery itself. <br />
<b><br /></b>
<b>EEP.</b></div>
<div>
<b><br /></b></div>
<div>
One morning this week, feeling overwhelmed by everything and physically particularly crappy, I decided to sit in a corner of Tril's stall and sip my morning coffee, breathing and taking in the sounds of the birds and the horses eating their breakfast.</div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEOdVMJMcdqdkz38GhLkcfOo-39WwZhJoJ9t1wNFVDb7OO2Ow35M8N7nRDfUmUNko-L8UCz5pptihoB2xBciPdLtgUbO7uZE_BAyJTXL2wSFhV4kL76z4N8EwqUyfdT0q47wAEOGOFraA/s1600/horse+coffee.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEOdVMJMcdqdkz38GhLkcfOo-39WwZhJoJ9t1wNFVDb7OO2Ow35M8N7nRDfUmUNko-L8UCz5pptihoB2xBciPdLtgUbO7uZE_BAyJTXL2wSFhV4kL76z4N8EwqUyfdT0q47wAEOGOFraA/s1600/horse+coffee.jpg" height="315" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Of course, they had to thoroughly inspect it for carrots and peppermints</i></td></tr>
</tbody></table>
Worrying wastes my energy, which is in such precious supply. Breathe, be in the moment.<br />
<div>
<br /></div>
<div>
(Every now and then, that moment is full of <b>EEK!</b> and some tears, admittedly.) </div>
<div>
<br /></div>
<div>
I have hope that my life can begin anew starting January 14. Until then...breathe. (Freak out.) Breathe. (Freak out.) </div>
<div>
<br /></div>
<div>
But--the day my surgery was scheduled, I had such a severe headache I <i>couldn't</i> freak out. All that mattered was relieving the pain--and having something on the calendar, with relieving the pain as the ultimate goal, is actually...exciting. Hopeful. Scary as hell, but hopeful.</div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEganG_4fHPNAr5hiKlhdsyTKdqdWqUa0FSZL4EZB9-uWAxdOjbEDJGoyHoPHsLm524yzbfAy-by8S-2TP134_-20HSgpTAq0JUYv85QF-NwQ2nwIDqeuNmcV7mmLng10X_NzgOerFrti1U/s1600/challenge_accepted.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEganG_4fHPNAr5hiKlhdsyTKdqdWqUa0FSZL4EZB9-uWAxdOjbEDJGoyHoPHsLm524yzbfAy-by8S-2TP134_-20HSgpTAq0JUYv85QF-NwQ2nwIDqeuNmcV7mmLng10X_NzgOerFrti1U/s1600/challenge_accepted.jpg" height="225" width="400" /></a></div>
<div>
<div>
<div>
<div>
<div>
<div>
<span style="font-family: inherit;"><br /></span></div>
</div>
</div>
</div>
</div>
</div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-29672946468925655622014-10-20T21:15:00.002-07:002014-10-20T21:22:14.260-07:00I ain't right in the head. No really, I have proof!Okay, so it's been a long time. Like, a <i>long</i> time. But! But! I have a good excuse! I have a doctor's note! ...Or three. Or ten. Or...hell, I lost count a long time ago.<br />
<br />
I eased off my blog several months ago when my health took such a turn that I could no longer work, and as the fun-filing-paper-pushing started, I thought it best not to blog. Well, that and my energy comes as a rare commodity, and it usually got sucked into something else online like, you know, important things. Uh...like Facebook. <br />
<br />
In this time I've been off-blog, I've been busy collecting doctors and diagnoses like Breyer models. First diagnosis, as I posted about here, was Hashimoto's thyroiditis, an autoimmune thyroid disease. Then came the nebulous fibromyalgia. Then came Arnold Chiari Malformation, type 1, followed most recently by obstructive sleep apnea.<br />
<br />
The most problematic--in <i>many</i> freakin' ways--is the Chiari malformation. The whosie-whatsis? Chiari--as in:<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLu1lQtbVD8wE89yb31LjciNxlz0-BOvEMJTahARW4UAjUGNpD6bX_2o5GWIkkHsZ4MafK8CKoE7vp9rCTnD9XzNZuEALF9_T8lCfgXTtFj3mdWSusBSb362HCEgG2aujV2SmqVXgRP0U/s1600/key.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLu1lQtbVD8wE89yb31LjciNxlz0-BOvEMJTahARW4UAjUGNpD6bX_2o5GWIkkHsZ4MafK8CKoE7vp9rCTnD9XzNZuEALF9_T8lCfgXTtFj3mdWSusBSb362HCEgG2aujV2SmqVXgRP0U/s1600/key.png" height="257" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieT8z8a7pgAQ33AC45TMQxTsCI22m1iEghonbxvUPIYkrTTZ1dmxP8buwcTc2YXYWNlQIzXd7WNvhBCooLhpfaeFQZkgnKubMWETi6nHf5Sne7W6plI3Wxd-_6OxbIA5s8LYE_aSnVN44/s1600/arrr.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieT8z8a7pgAQ33AC45TMQxTsCI22m1iEghonbxvUPIYkrTTZ1dmxP8buwcTc2YXYWNlQIzXd7WNvhBCooLhpfaeFQZkgnKubMWETi6nHf5Sne7W6plI3Wxd-_6OxbIA5s8LYE_aSnVN44/s1600/arrr.jpg" height="320" width="249" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl4xWc8eAZ-7NXHYfs1lrGifT70bhV1qCtDjIxr7yS9oewtYtqYquZFNVLTAFthq3vGdc2ObIoEWoG4wv0P2q17oDiwMUvkpOp2CWnwICaQ-jziziQrN6kN8qT_QU6kpXNOplOHgMGuV8/s1600/eee.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl4xWc8eAZ-7NXHYfs1lrGifT70bhV1qCtDjIxr7yS9oewtYtqYquZFNVLTAFthq3vGdc2ObIoEWoG4wv0P2q17oDiwMUvkpOp2CWnwICaQ-jziziQrN6kN8qT_QU6kpXNOplOHgMGuV8/s1600/eee.jpg" height="126" width="320" /></a></div>
<br />
<br />
I shall put my teacher hat on (actually, I never really take it off; I think it's grown into my skin now and there's no removing it) and explain.<br />
<br />
The back of the brain has these parts that hang down in the back, under the cerebellum, called the tonsils. For most folks, your brain and tonsils look something like this:<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-5itSJGWwYhNr3i3smC47p4zkD4ioyzXfO1lLpjEnodidHiuQmddHH9nSRLetfu2W7LirLH8Jc0lQsKU-nYQgUCTxanTl3-wm2iy5Ju6vpY9IXOjro6FSvbGPJX-x2kAT6zrlmzkHktU/s1600/normal-brain-mri3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-5itSJGWwYhNr3i3smC47p4zkD4ioyzXfO1lLpjEnodidHiuQmddHH9nSRLetfu2W7LirLH8Jc0lQsKU-nYQgUCTxanTl3-wm2iy5Ju6vpY9IXOjro6FSvbGPJX-x2kAT6zrlmzkHktU/s1600/normal-brain-mri3.jpg" height="294" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Ah, it's so cute</i></td></tr>
</tbody></table>
Lookit all that happy space! Uh...no, on the right. Up more. Okay, see that tube thingy coming down out of the skull? The spinal cord? Well, follow it up into the skull (the nobby thing it forms at the top is the brain stem). Around where that tube thingy curves slightly to the left on the right you see a blob of brain--the tonsils. See all the dark grey? That's the cerebral spinal fluid, flowing happy and free. The tonsils are up a good centimeter or so above the skull opening, and all is as it should be in brain tonsils-land.<br />
<div>
<br /></div>
<div>
Then there's me:</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUuI2bRjayBX5TI9VeWSTd-cB5iknuDJqCuzmxea8d7omLf2IiDvWxeqjlabx0PhWQXSPV2dRJGzdyvcSfd6JhE0dnCeA_vtrsblyOi39491p48M1q3o-mflBxuRzHM4BOXV_NAMo3Zh0/s1600/Brain4.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUuI2bRjayBX5TI9VeWSTd-cB5iknuDJqCuzmxea8d7omLf2IiDvWxeqjlabx0PhWQXSPV2dRJGzdyvcSfd6JhE0dnCeA_vtrsblyOi39491p48M1q3o-mflBxuRzHM4BOXV_NAMo3Zh0/s1600/Brain4.JPG" height="293" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>I actually fell asleep during this MRI. Zzzzzz...</i></td></tr>
</tbody></table>
My tonsils hang down out of the skull opening, a centimeter lower than they should be and about half a centimeter out of the skull. See how the cerebral spinal fluid ain't so happy and free? Turns out, over time, cramped CSF starts getting all pissy and acts out in bizarre ways.<br />
<div>
<br /></div>
<div>
Okay, still a bit unclear, I'm sure...so, here's a labeled diagram I made using fancy software (or, just what came on my MRI CD).</div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_nac8nxGHskHboU998F-IFFJr4U8BVvcZMmLtxFcmHWyY0gM_pHnVP9bo3EeKbWzGjPnCls4IFLFLgRbiiV5XBguZgc412aisf-Ny80Q2NjyhSr7luxlq3KbvJY37DCk38H-APWDzOA8/s1600/Lauras+Chiari.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_nac8nxGHskHboU998F-IFFJr4U8BVvcZMmLtxFcmHWyY0gM_pHnVP9bo3EeKbWzGjPnCls4IFLFLgRbiiV5XBguZgc412aisf-Ny80Q2NjyhSr7luxlq3KbvJY37DCk38H-APWDzOA8/s1600/Lauras+Chiari.JPG" height="400" width="378" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Look, arrows...oooohh</i></td></tr>
</tbody></table>
The cerebral spinal fluid/CSF is narrowed and perhaps compressed in the areas marked with arrows on the left and top. The right arrow measures the herniation, which I showed as 3.4mm but officially on a few radiology reports is 4mm. Cramped CSF and a brain stem that's all emo about getting touched work together to create a bizarre collection of symptoms. <br />
<div>
<br /></div>
<div>
Let's see...well, there's the classic Chiari headache, severe, dull, unresponsive to any medication, that seems to grab the back of my head and squeeze it like a nutcracker. The pain radiates forward and out my eyes. In short, it sucks, like, a LOT. Lying down makes the pressured pain worse; oftentimes, a <i>lot </i>worse. During a recent MRI, where I was required to lie still on my back, the pain became so severe I grew dizzy and nauseated. It was excruciating. Then, bonus, when using the mirror afterwards to put my earrings back on, I was shocked to see both of my eyes were severely bloodshot, presumably because of the intense pressure.</div>
<div>
<br /></div>
<div>
Sometimes the headache just appears, and sometimes things like coughing fits, loud talking, singing, and even laughter trigger it. Sneezing? Well, with a lot of Chiari patients that's a trigger too--but for me, sneezes don't trigger pain. They trigger the feeling of a thousand ants crawling up the side of my head. Yaaaaay.</div>
<div>
<br /></div>
<div>
<div>
<div>
I tell people I have this big grab bag of symptoms, and every day my body reaches in and grabs a couple of fistfulls. There is no real rhyme or reason. I've lost temperature sensation in my lower right leg (touch me with an ice cube, and I know you're touching me, but don't feel the cold); I have constant hand tremors that vary in severity; I have obnoxious fatigue that my mother has described as me being half dead, not just asleep; my muscles will spasm with minimal use, painfully seizing up in protest like I've run a marathon; my vision will go hazy, like looking through dirty glasses; words get tangled up in my mind and struggle to exit my mouth; I stop at green lights because of bizarre "brain fog;" I'll become dizzy out of nowhere; I'll become nauseous (and occasionally dry heave or vomit) out of nowhere; my hands will swell like when I was 9mos pregnant; my joints will ache and throb in body-swallowing pain...yeah. The list goes on. Par-TAY.</div>
<div>
<br /></div>
<div>
Worse, though, is Chiari has the double whammy of being rare <i>and</i> misunderstood. Doctors are uninformed, and pass that misinformation on to their patients. Despite the research everywhere saying herniation size doesn't matter, symptoms do, I've had multiple doctors tell me my 4mm herniation is too small to be behind my symptoms. I've also had a neurologist and two neurosurgeons mismeasure my herniation and try to tell me <i>I don't have</i> a Chiari (yeah, no; three radiologists and two experts disagree). </div>
<div>
<br /></div>
<div>
Frustrated, I was ready to give up on Chiari completely when a young woman I met on an online Chiari support group encouraged me to send a Hail Mary pass to Dr. Bolognese, a specialist considered to be one of, if not <i>THE</i>, world expert on Chiari malformation. UCLA neurology, no slouch themselves, defer to him and called him and his former work at The Chiari Institute (he now has his own Chiari Neurosurgery Center) as the best in the world. I shrugged and filled out his 19-page questionnaire, packaged it up with copies of my brain and cervical MRIs, and sent it to him in New York. I was shocked when his office called wanting to set up a Skype videoconference appointment--he uses this often with his out of state and international patients. Bolognese does not see you, in person or on Skype, if he doesn't think he can help you. So, hubby took the day off and we spent nearly an hour Skyping with Bolognese, whom we found funny, attentive, thorough, and innately curious--he <i>wants</i> to know what is up with me. </div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwLOUXRei-VCyWHj-dPB5boaKiGsYGO93I0IR68qXCuFY9-1TU6whQFBVe7ze9RQMTz9Sly4aFnTcnLjm6bKPyfqzoV9WrVozKaKjM5-xlXxIcX-PZZmDqMpyzD2WIeCyDqdGyF9kJGs0/s1600/bolognese.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwLOUXRei-VCyWHj-dPB5boaKiGsYGO93I0IR68qXCuFY9-1TU6whQFBVe7ze9RQMTz9Sly4aFnTcnLjm6bKPyfqzoV9WrVozKaKjM5-xlXxIcX-PZZmDqMpyzD2WIeCyDqdGyF9kJGs0/s1600/bolognese.jpg" height="400" width="285" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Hi, I'm Dr. Bolognese, and you're not</i></td></tr>
</tbody></table>
<div>
He described how many doctors are very conservative about treating Chiari, which is understandable as the only treatment is a type of brain surgery called decompression. These docs only operate when the herniation is 5mm or greater (come ON, one measly millimeter?!) and all the boxes are checked indicating Chiari is an issue. This gives them a high success rate; however, he said such an approach inevitably leaves some patients out in the cold. Since Chiari can be so bizarre and not give a crap about what boxes it checks, a <i>lot</i> of patients can be left out in the cold in this approach.</div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/RcKfgBqU0H0?feature=player_embedded' frameborder='0'></iframe></div>
<div class="separator" style="clear: both; text-align: center;">
<i><span style="font-size: x-small;">Dr. Bolognese appeared on this episode of Mystery Diagnosis, describing and treating this poor girl's combination of Chiari Malformation and Ehlers-Danlos Syndrome.</span></i></div>
<div>
<br />
But, when you get a 4mm herniation in a patient that "smells funny" like me (we laughed when he said that and hubby starting sniffing my hair), you go in for a closer look. And well, that's what we're doing right now: putting on the magnifying lens and putting our noses to the page to see what is revealed. I just sent him a copy of a special MRI that studies the flow of cerebral spinal fluid; we'll see what he says, hopefully by the end of the week.</div>
<div>
<br /></div>
<div>
I sent him a few still images, including this one:</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDn9FITbWA31Zt5MwFo5OSVvokSNbM2yPUZgdRvgddvwetmSRBnWZkLv5CV1V04QQQzkq42vgzCHyHpgsQWgHkzkTuHTl1-FYa8c0Tmb2_4tRLNv2jiTUsMpxV0RbLRDHKMT3TDloYuzk/s1600/Cine+MRI+7.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDn9FITbWA31Zt5MwFo5OSVvokSNbM2yPUZgdRvgddvwetmSRBnWZkLv5CV1V04QQQzkq42vgzCHyHpgsQWgHkzkTuHTl1-FYa8c0Tmb2_4tRLNv2jiTUsMpxV0RbLRDHKMT3TDloYuzk/s1600/Cine+MRI+7.JPG" height="390" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Seriously, world of Tron-weird, ain't it?</i></td></tr>
</tbody></table>
What you see on either side of the spinal cord is the dark grey CSF, and it appears at least in this image not to get past the location of the brain tonsils--indicating a blockage. Dr. B stated at least as much in the email reply, with the important disclaimer that he can't say for sure until he sees the entire study.</div>
<div>
<br /></div>
<div>
Bonus, I was diagnosed with obstructive sleep apnea about three weeks ago. That is completely out of left field for me; I don't fit the type, and it just...showed up out of nowhere back in February or so when hubby first nudged me to tell me I wasn't breathing. I am getting a CPAP hopefully in the next week or so (son is dressing as Darth Vader for Halloween, but I get to BE Darth Vader! Oooh aaah, ooh aah...). Apparently, apnea of both types is extremely common in Chiari. The scarier type is central sleep apnea, where the compressed brain stem "forgets" to tell the body to breathe. Mine, obstructive, is thought in the case of Chiari to be because cranial nerves are compromised and the throat muscles relax more than they should, collapsing into the airway. Dr. B said that could in fact be one more piece of the Chiari puzzle...complicated little bastard, isn't it?</div>
<div>
<br /></div>
<div>
I am now a full time patient, and it sucks...but I still get out to the barn. I don't trust my body to be on Trilogy's back for now; my balance is wonky and my muscles are weak and numb, and the <i>last</i> thing I need is a fall. He wouldn't throw me, but that doesn't mean I couldn't wind up coming off of him. Until the dust settles, I'm staying off of him.</div>
<div>
<br /></div>
<div>
But I'll be damned if I'm giving up my barn time. Enter Firefly and harness-driving goodness:</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg4zPVe6agg-XMXnGGGY3inLfhN2VH5Du9B6Zx40VA49n-Fl2T2n77l7WGeDn5v2_fyOdu-gr-6PbCne57unE6BNJEjdfxIr_omdLRILgsUttKKu9B7KJZC9kiy8OfqzSS6WSHgT0F1c8/s1600/IMG_7481.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhg4zPVe6agg-XMXnGGGY3inLfhN2VH5Du9B6Zx40VA49n-Fl2T2n77l7WGeDn5v2_fyOdu-gr-6PbCne57unE6BNJEjdfxIr_omdLRILgsUttKKu9B7KJZC9kiy8OfqzSS6WSHgT0F1c8/s1600/IMG_7481.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>"Waaaaiiittt...this is work, isn't it?"</i></td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNhJQduLV7I41e7waBQ7VpT7hQRLD0Yi9KGERJtcgM2_4a8O19KcANsfDyM0xWoFxzITYwxn3IXur-jxrqYtrS6e5JWNRw8tGVRdQvv8cQxfBFCYpP7N0mZ12VR1ngIlIQ1X_Y3_-jIWg/s1600/IMG_7513.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNhJQduLV7I41e7waBQ7VpT7hQRLD0Yi9KGERJtcgM2_4a8O19KcANsfDyM0xWoFxzITYwxn3IXur-jxrqYtrS6e5JWNRw8tGVRdQvv8cQxfBFCYpP7N0mZ12VR1ngIlIQ1X_Y3_-jIWg/s1600/IMG_7513.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>We all know who the biggest horse is in this arena</i></td></tr>
</tbody></table>
<br />
Throughout all this, Trilogy has been worked in hand, and Firefly has begun working in earnest. It is so much easier on my body while remaining vital to my soul. What's additionally awesome is my kids can ride with me--each boy can sit on either side, and we go for a ride, blowing bubbles and chatting about anything and everything.</div>
<div>
<br /></div>
I hope to have Tril trained to pull a cart as well; he has the mind for it, and his back issues will be moot when there's no weight on it. <br />
<div>
<br /></div>
<div>
And now, I must sign off because--surprise surprise--my head hurts. But I promise to be back before, uh, another 10 months have passed. F'reals.</div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTbsooa1sSz2CDTCoiKwy0zBrJokxgexi18ZbkI6sThNL0McMy6c-CVZnGXwxOuDLJIl483QZYMRr3fac3TpTkCZhyphenhyphenIccvLKt-1IpbiCl9woocQxTK_uqBmk81w0upSsXfRPgGCczwP44/s1600/IMG_7467.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTbsooa1sSz2CDTCoiKwy0zBrJokxgexi18ZbkI6sThNL0McMy6c-CVZnGXwxOuDLJIl483QZYMRr3fac3TpTkCZhyphenhyphenIccvLKt-1IpbiCl9woocQxTK_uqBmk81w0upSsXfRPgGCczwP44/s1600/IMG_7467.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Happy trails are happier when there are treats involved</i></td></tr>
</tbody></table>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com2tag:blogger.com,1999:blog-8816589799315004018.post-87727302711062827742014-01-30T09:24:00.001-08:002014-01-30T09:28:14.840-08:00A conversation with Tril on the trail<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzDPD9GIGcaMOJaJvXmPpIO5JmWRuuHlzWguuQARZJFZ-wkX0yixlSgAkN92sGXL-JgiEwKj-YMaJAnO3Jw_fJXRTelmLqEqNnla-Y8qD5VxTgz5gZqVf8gswVhPD3f876p_QMu30b1X0/s1600/IMG_3518.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzDPD9GIGcaMOJaJvXmPpIO5JmWRuuHlzWguuQARZJFZ-wkX0yixlSgAkN92sGXL-JgiEwKj-YMaJAnO3Jw_fJXRTelmLqEqNnla-Y8qD5VxTgz5gZqVf8gswVhPD3f876p_QMu30b1X0/s1600/IMG_3518.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Just about to start our "discussion"</i></td></tr>
</tbody></table>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Tril: "I'm feeling playful! Ooh...WHAT THE FUCK IS THAT?"</span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Me: "It's a manhole cover, dumbass, same one that was here yesterd</span><span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">ay."</span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Tril: "But it might eat me today!"</span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Me: "WHATever. Move on."</span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Tril: *pout* </span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Me: "Dude, walk a straight line, would you?"</span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Tril: "But...what's THAT? And THAT? And..."</span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Me: "Knock it off. I know you're not actually scared. Walk a straight line."</span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Tril: "WHATTHEFUCK!" *props and freezes in place*</span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Me: "F'real? Tril, move forward."</span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Tril: "NO! There's a THING!"</span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Me: "TRIL. I know you. You aren't afraid of anything. But you love to play with everything. Move forward. ...Still no? Alright, then." <use excess rein to smack him on the butt></span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Tril: "OH! Oh. Oh, I see you actually mean it. Moving forward then."</span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Me: <rolling eyes></span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Tril: "<i>OHMYGODWHATTHEFUCK</i> is <b>THAT</b>?" <spooks hard in place, spins on his haunches, tries to bolt home when a flock of birds take off--REALLY? BIRDS?></span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Me: "Oh <i>NO YOU DON'T</i>." <shorten one rein, spin him back the other way, kick him forward> "<i>Enough </i>of this crap."</span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Tril: *sigh* "Well...now I'm bored with this game because <i>you </i>won't let me play. I'll walk along at a leisurely pace, in a straight line, and on a relaxed rein now."</span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;"><br /></span>
<span style="background-color: white; color: #333333; font-family: Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif; font-size: 13.333333969116211px;">Seriously, he was perfect the rest of the ride. The manhole covers, weird looking tree stumps, birds, Mysterious Things et al didn't even cause him to do more than flick an ear again. Somewhere, his antics have worked for him--but not with me.</span>LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com1tag:blogger.com,1999:blog-8816589799315004018.post-80253260940758145592013-12-21T13:34:00.001-08:002014-01-01T21:13:21.040-08:00"This is your new life now"<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF69S4jnRKDeS8wvDRJ4z24FRiuSNCK_Sjy4KoHxmrPMfP0bV7M8JZYSpSbXmAaXRubTntGRBBuy7lFC7XuXY7sioYFmxrbW2OVn0YW8tWeudPaLuQBhNNL5tT6id0nN2AZBP5jtsOLB4/s1600/IMG_3117.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgF69S4jnRKDeS8wvDRJ4z24FRiuSNCK_Sjy4KoHxmrPMfP0bV7M8JZYSpSbXmAaXRubTntGRBBuy7lFC7XuXY7sioYFmxrbW2OVn0YW8tWeudPaLuQBhNNL5tT6id0nN2AZBP5jtsOLB4/s400/IMG_3117.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Freedom.<br />(Even Firefly can get all four feet off the ground at once, if motivated)</i></td></tr>
</tbody></table>
When I started this blog a little over a year ago, the intent was for it to chronicle my growth with my new equine partner. Because of various Things life has thrown at me, I am, well, a perpetual newbie (or at least feel like one) as most of the time I'm thinking and feeling variations of "What the heck is that? What the heck am I supposed to do?"<br />
<br />
Well. That's fitting, I suppose. But it was a lot more entertaining when it was about random inexplicable swellings and vexing riding technique.<br />
<br />
My life, lived always at 90mph, hit a brick wall in October. As I previously posted, I was diagnosed with an autoimmune thyroid disease back in August. I figured start treating that, life will be better than before. Sadly, no.<br />
<br />
Autoimmune diseases are like potato chips--you usually don't have just one. Now, my second diagnosis is not considered autoimmune--at least not yet (there is some research suggesting it might be)--but it is often seen partying with my first. This condition is, to quote my rheumatologist, "a <i>bitch</i>." It's fibromyalgia.<br />
<br />
Now, I <b>hat<span style="background-color: white;">ed</span></b><span style="background-color: white;"> hearing those words come through my rheumatologist's lips when she suggested that was my diagnosis. Oh, <i>hell</i> no. Fibro is seen by some as "not a real disease" and means just that "the docs haven't figured out what's <i>really </i>wrong." <span style="font-family: inherit;"><span style="line-height: 14px;"> </span></span>H</span>owever, that's been long since discounted in the medical field--it is a real condition, a real <i>bitch </i>of a condition, that as best can thus be confirmed is described as a neurological disorder relating specifically to the central nervous system.<br />
<br />
<span style="background-color: white; line-height: 14px;">I have already heard a certain amount of, "Oh, my blankity-blank has that, went gluten-free/dairy free/sugar free, and was cured! You should try it!" (I've kept a symptom and food diary--there is no correlation. Actually, my symptom diary doesn't seem to have ANY correlations to ANY thing, except stress/activity level.) Or, "Have you tried this?" Or, "Have they checked for that?" Or, again, "That just means they haven't found out what's really wrong with you. You should see/try/look into x-y-z." I </span><i style="background-color: white; line-height: 14px;">hate</i><span style="background-color: white; line-height: 14px;"> that it's fibromyalgia, because as soon as I say that word, that's what people start saying in all their good intentions. I avoid the word except around those I trust won't be warmly offensive.</span><br />
<br />
Like many neurological conditions, it's a beast to treat. (Or, perhaps again, a <i>bitch</i>.) I have the three hallmark symptoms: whole body aches, severe fatigue, and sleep disorder. The body aches are always present and in varying degrees of severity; when they're bad, they wake me up at night and keep me from moving because it sucks. The fatigue can be even more disabling, because, no matter what I <i>want</i> to do, my body is positively <b>screaming</b> at me to lie down, <b>NOW. </b>It's not "I was up late last night" tired, or "I sure had a busy day" tired.<b> </b>It's a bizarre, drugged feeling, akin to when jussssst waking up from general anesthesia. When it hits, I must lie down, and I must sleep. <i>NOW. </i>When I wake up, it may be 20 minutes later, or it may be 3 hours later--the bizarre thing is it feels the same no matter how long I sleep. I've been shocked the times it was 2-3 hours, because it felt like <i>maybe </i>an hour, tops. It's like a time warp. I'm vaguely aware of what's going on at points during that drunken nap, but I can't rouse, and can't be roused. More peculiarly, I'm often not able to wake completely up after such a nap. I'm able to get things done--feed horses, make dinner, read to the boys at bedtime--but eventually, my body succumbs once again and I pass out for the night around 8pm. Many, many nights hubby and I go to watch TV after putting the boys to bed, and I wind up sound asleep soon after. <br />
<br />
But while these are the hallmarks of the condition, it comes with oh so many other symptoms. I've repeatedly told people it's like my body has a grab bag of 20-30 different symptoms, seemingly unrelated, and every morning my body reaches in and grabs a handful or two. They come in many flavors. Cardiovascular palpitations and chest pain; digestive nausea, inappetance, and elimination issues; emotional mood affectations ranging from depression to anxiety to irritability. The bulk of my symptoms, however, appear to be neurological, which is why I'm seeing a neurologist next: tremors (particularly hands--drives me NUTS), numbness and tingling of the mouth, feeling of a thousand ants crawling up the side of my head (sometimes left, sometimes right, but never both sides at once), skull-piercing headaches, intolerance of noise (it's like scores of nails on dozens of chalkboards), foggy vision, inability to concentrate (my eyes start to blur and zone out when trying to read, for example), slurred speech, mixing up words (which has made writing difficult--even in this post, I'm mistyped using similar sounding words, and even a few phrases that just mixed up the order of the words I'm intending to use), faulty memory...it goes on.<br />
<br />
Despite my initial revulsion at the diagnosis, four of my doctors--my general practitioner, rheumatologist, endocrinologist, and OB/GYN--all suspected this blasted fibromyalgia diagnosis. Unfortunately, as I have learned about and lived with this condition, I've slowly come to agree and accept. There may be some other diagnoses awaiting me--there are a few more minor ones suspected--but for now, the energy is going into controlling this unruly bitch.<br />
<br />
Because of this medical mayhem, I have been off work since October 7. This has been exceedingly difficult for this driven, independent, multi-tasking woman. My body does <i>not</i> work the way it used to, and that is extremely difficult to adjust to. Every morning, I must listen to what my body is saying and submit to it. I cannot change or force myself through it--that <i>guarantees</i> I will be paying for my obstinance for days in the form of the volume of many symptoms being turned up excruciatingly high. Every day, I must rest after a few hours of activity, or I will pay for it dearly later when my body slams on the emergency brakes. <br />
<br />
I have just started physical therapy. I had a most elucidating, and in a way frightening, appointment this past Thursday. After my initial assessment (during which the head therapist said I was "very typical fibro"), I was assigned to my specific therapist, and met with her this second visit. We spent a lot of time talking first, and it was difficult to hear some of the things she said. Again, I was very typical fibro. Again, I must be sure to listen very, <i>very</i> carefully to my body. <br />
<br />
I told her the madness of trying to get into an exercise program with my horse. Since being diagnosed, I have done very carefully timed mostly-walking rides on Tril, with some itty bitty bits of trotting and occasional two pointing squeezed in. I set my phone's timer for 22 minutes and dismount within three minutes of it going off. The insanity is, on Friday, I may have a great ride on him. I may two point two full laps around the big ring; I may be able to ride a nice framed-up trot for 3-5 minutes and repeat it after a break, I may be able to bend, pivot, and do lateral work at the walk for a solid 30 minute ride. But on Monday, after a restful weekend, I may feel heavy and drag, and struggle with simply tightening the girth. It's beyond frustrating. But--another component of fibromyalgia is exercise intolerance. You simply cannot base what you do tomorrow with what you were able to do today. <br />
<br />
"This is your new life now," she told me. I fought back tears as I nodded in agreement.<br />
<br />
Because that particular day I was feeling tired and my body heavy, she was gentle in the exercises she chose for me. She had me first come to a mirrored wall and practice stepping sideways. That's it--stepping sideways. I was to focus on keeping my legs straight and move from the hip and move five steps right, then five steps left. I was stunned, exasperated, and just plain pissed with my body when <i>three</i> steps into it, my lower legs began to tire. They felt hard and heavy and labored. THREE sideways steps, and that's what happened. I was able to finish the task and do two reps with those heavy, tired calves, but that's just <i>ridiculous.</i> What the <b>fuck</b>, body?<br />
<br />
Another exercise that had me both fascinated and internally infuriated involved me sitting in a chair and holding a ball in both outstretched hands. I was to lift the ball up to the point of tolerance, and then bring it back down. I was shocked when I was unable to left it past shoulder level without sharp pain in both shoulder joints. WHAT the...??? The therapist said, "Ah, we're getting into range of motion now." Again--I was angry that my body would find such a basic task not only laborious, but painful. It was fascinating...and heart breaking. I don't understand.<br />
<br />
A few days later, doing my exercises at home, I was able to do many more sideways reps, and lift the ball quite a bit higher. The next day, not as much. Today, we'll see. Tomorrow, who knows.<br />
<br />
It's so difficult because what I <i>want</i> to do remains the long list of tasks I've enjoyed my whole life through, but each day, my body gives me only so many energy tokens. Some days it may be 30, some days it may be 10. Showering is always at least one, so I must choose my tasks carefully. Today I've baked pumpkin bread, showered, washed my younger son's bed sheets, made lunch, and started another load of laundry. That's at least five tokens. I'm not sure how many remain, but I'm saving up for dinner, putting the boys to bed, and taking care of the horses.<br />
<br />
That last one remains vital to me. I must go out and see them, even if I can't ride. I need their motivation to get up and move, feeding, cleaning, grooming, walking. On some of my worst days, it is the time at the barn that I feel my best. Energized, smiling, able to ignore the pain, at least for that short little bit. Tril and Firefly amuse and recharge me. Sometimes, I just sit in a patio chair in a corner of Tril's stall after feeding, finding comfort in the soothing sounds of the eating. Tril will often stop in the middle of his meal to come over to me for some affection.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioxq46mgfrQFd4F8zThq116hyphenhyphenxB_A5S2NO4whtNkVmu-nu1WfJZtZ33pth-rSn5ALFVzJ0p8D-iHxXiSEi6fUQgg-n9AV4vQTcAuO5SEuSspajgfmUu3zKej3_ys80hvzudwcMODOn85Y/s1600/IMG_3098.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioxq46mgfrQFd4F8zThq116hyphenhyphenxB_A5S2NO4whtNkVmu-nu1WfJZtZ33pth-rSn5ALFVzJ0p8D-iHxXiSEi6fUQgg-n9AV4vQTcAuO5SEuSspajgfmUu3zKej3_ys80hvzudwcMODOn85Y/s400/IMG_3098.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Such a mush</i></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil7h0dowZ5LUjJyEe_PhUSYbDcnqasBXN65APX9f11BQoAOtA_9EtC8LPCZ3XRQvmiJSj6JF6RxXe1FdBlZHp_Td6UT6dkhY5ZRsSpOX9crvlJ6aEPTgVzP0Zc0mq_qL-tfN2aLe_lUnY/s1600/IMG_3100.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil7h0dowZ5LUjJyEe_PhUSYbDcnqasBXN65APX9f11BQoAOtA_9EtC8LPCZ3XRQvmiJSj6JF6RxXe1FdBlZHp_Td6UT6dkhY5ZRsSpOX9crvlJ6aEPTgVzP0Zc0mq_qL-tfN2aLe_lUnY/s400/IMG_3100.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>"Pet meeeeee!" Mush mush mush</i></td></tr>
</tbody></table>
My rheumatologist and physical therapist both encourage me to keep riding as it builds core strength and improves my awareness of my body, but with the caveat that I must be exceedingly attentive to what my body is saying to me that day. You need this, they told me, but be careful and be wise. I have been, such that my rheumatologist said she's proud of me.<br />
<br />
I wish it were more. I want it to be more. I'm early in treatment, so there is great potential for improvement, but as my rheumatologist said, "while the goal is to get you to 100%, the truth is, we may never get you there."<br />
<br />
This is my new life now. <br />
<br />
I could weep and moan, I could lament and rage, I could fight and lose. But...why? Energy comes at a premium these days. Why waste it to such negativity? I must accept and adjust. Not that I do all the time, but, I must.<br />
<br />
This is my new life now. I'd best get busy living it.LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-86806449131190980002013-10-14T14:03:00.002-07:002013-10-14T19:52:30.122-07:00Not just a boy with a horse, but now, a *horseman*This day, my son was not a boy with a horse. He was a horseman.<br />
<br />
Firefly revealed why "pony" is seen by many as a four-letter word, and why her nickname with us has always been Firebutt. While he fawned over her, grooming, softly talking, caressing, she ignored him and pushed him about as best she could while tied to the hitching post. There was plant material on the ground and she wanted it and was doing her damnedest to access it, and if that meant knocking her seven year old caretaker about, so be it. <br />
<br />
I watched this unfold from Trilogy's back, my 1000lb sofa during my minimal, walking-only exercise as recommended by the rheumatologist. From there, I was able to give my son the independence he craved while still secretly supervising. I could see Firefly was being a Firebutt, and saw my son's face change from warm affection to frustration and anger.<br />
<br />
After I finished my 15 minutes of walking, I returned to see he had turned Firefly loose on the property to wander and roll and was cleaning her stall. I asked what he was doing; he answered he was trying to think of a punishment and had settled putting her to bed without her dinner. "Um...no, honey. You can't punish her like a person; skipping a meal could kill her." (Okay, it's a touch hyperbolic, but it <i>could</i> trigger a colic which <i>could</i> kill her.) Hearing my gentle correction, my son's brow furrowed and his eyes darkened. He was angry and frustrated, and was inching toward pouty. "Let me get the saddle switched on Tril," as we had planned for him to ride after I did, "and then let me help you learn how to punish her the way she'll understand."<br />
<br />
As I switched the saddle, I could see my son was hurt his beloved mare had treated him so poorly. "Can't we just have someone else take care of her until I'm like 15?" he said in his frustration. "Not get rid of her, just make it so I don't have to take care of her?" <br />
<br />
"No, honey. You need to learn how to handle her in every circumstance. I saw how she was treating you--she was being naughty. She needs to be reminded that you are in charge, not her. Just trust me, hon." I was surprised my fiercely independent son actually acquiesced and agreed to trust me and try.<br />
<br />
With Tril's reins in my hands and Firefly's leadrope in my son's, we led our horses to the round pen. As we walked, I asked my son if he knew who the real leader of a horse herd was.<br />
<br />
"No...?"<br />
<br />
"The lead mare. The stallion protects the herd and signals when it's time to move on to new food and water, but it's the lead mare who handles business in the herd." An analogy popped up that I hoped would help him understand: "Think of the stallion being like the principal of your school. He's ultimately in charge for the big decisions, but think of the lead mare being like the teacher in your classroom. She's the one who takes care of everyone day-to-day; the learning, the behavior, managing the each kid in her class. Some horses like to be lead mare, and some horses are happy letting others be the leader. Firefly is convinced she is lead mare--we need to remind her, the way the lead mare in a herd would, that she is mistaken."<br />
<br />
I let my son ponder that the rest of the walk up the the pen.<br />
<br />
There, I stood with Tril patiently waiting at the gate while my son removed Firefly's halter and schooled her through each step of my basic instruction on natural horsemanship.<br />
<br />
"In the wild, a horse is punished by being kicked out of the herd. They're sent away and not allowed to rejoin," I said. "In the wild, that's a death sentence. A horse without the protection of the herd is easy pickings for predators, like what you've seen with buffalo and wildebeast." My son loves all things with hooves and horns, and watches multiple documentaries on them. As a result, he has a firm understanding of the importance of staying with the herd (as well as a tremendous hatred of lions).<br />
<br />
"The banished horses will gallop back and forth trying to get reconnected with the herd, but the lead mare will block their attempts--until the naughty horse submits and apologizes. Remember how a horse shows you they're submitting?"<br />
<br />
"Yes, moving the mouth and licking and chewing," he confidently responded.<br />
<br />
"Yes, and sometimes even then, the mare will say, 'No, you were too naughty, I'm not ready to accept your apology yet.' Eventually, though, she lets them rejoin and the punished horse is much more quiet and willing to do whatever is asked." Son was silent and processing. "Now it's your turn. Send her around this arena. Make her work when she doesn't want to. Make it clear this is not turn out--there will be no rolling or attempts to nibble on the grass on the other side of the fence. Make her move, make her turn, make her listen to you."<br />
<br />
My son had done something like this before, so he got to work cracking the lunge whip and making her go without ever touching her. She tried to ignore him at first, and a few times tried to sneak past him (with some success), but he stayed on her and made her go until she submitted. When she did, she was allowed to rejoin his "herd" and walk alongside--but, as history had told me she would, she lost interest in submitting and soon chose to hang with Tril and I at the gate. <br />
<br />
"Don't let her do that--make her listen to you the <i>entire</i> time." Away son went, making Firebutt move and change direction until once again she would listen.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi844Z9qVsgtakIbmpxZW-bYRsGK1WGR-NPxRCMk7LBPqHRSsq-LocWxrigAPgTj-s-tDwYbW_9aYR4rliYh8Cv0Ezu8d52JtQKXgWd7XwXS3vLn5qWH4Owj93-LXqXbYjLl8tn68S0GRw/s1600/IMG_2548.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi844Z9qVsgtakIbmpxZW-bYRsGK1WGR-NPxRCMk7LBPqHRSsq-LocWxrigAPgTj-s-tDwYbW_9aYR4rliYh8Cv0Ezu8d52JtQKXgWd7XwXS3vLn5qWH4Owj93-LXqXbYjLl8tn68S0GRw/s400/IMG_2548.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>The mare is leader no more</i></td></tr>
</tbody></table>
This time, she stayed with him, intent, cautious, submissive. They walked as a herd of two along the circumference of the pen, Firefly always accepting her position as follower while my son led. He'd stop, she would stop respectfully behind him. He'd turn, she'd follow.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmJiqlV-0zqbKfyApqLadGUW2kO2y_AdoPZ87fsby9zomC4eSQAthhgEX-JcPe0G0IbsPJkOcUKp370vgkdds5bwvWVWi-E_4V6Dar9_fywgE70ihKY4QqzyfU208ZtVk4Hy_3kT2uUWo/s1600/IMG_2549.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmJiqlV-0zqbKfyApqLadGUW2kO2y_AdoPZ87fsby9zomC4eSQAthhgEX-JcPe0G0IbsPJkOcUKp370vgkdds5bwvWVWi-E_4V6Dar9_fywgE70ihKY4QqzyfU208ZtVk4Hy_3kT2uUWo/s400/IMG_2549.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>A herd now complete</i></td></tr>
</tbody></table>
I glowed in pride. After a little time, I asked my son if he was ready to ride Tril now.<br />
<br />
"Mom, go ahead and let my younger brother ride. I just want to stay here with Firefly. Would you mind bringing me some carrots to scatter in the pen for her?"<br />
<br />
My heart melted. These two friends had had their first fight, and now had made up, and were closer than ever before.<br />
<br />
That's my fine young horseman.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw-P61Mr12nnX8U2rXHRR_xwpp7rq9JFKe3VxQlx-3o1IdjXfX8ZIJlj_O00L_2b0M5PC03GXl2-QzrkYPLWadJaskwuxTjVdekOQ9fw_b9rEOx-H2lVtORqqccBplHr0ivBdEAuRK__s/s1600/IMG_2551.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw-P61Mr12nnX8U2rXHRR_xwpp7rq9JFKe3VxQlx-3o1IdjXfX8ZIJlj_O00L_2b0M5PC03GXl2-QzrkYPLWadJaskwuxTjVdekOQ9fw_b9rEOx-H2lVtORqqccBplHr0ivBdEAuRK__s/s400/IMG_2551.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Bonded even more closely than before</i></td></tr>
</tbody></table>
<br />LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-70393484509404298432013-08-22T19:33:00.002-07:002013-08-22T19:39:18.065-07:00My body is SEEERiously pissing me off nowI haven't posted anything in a while, I know. This is because my body has decided to have a tantrum, and I feel cuh-rappy most of the time.<br />
<br />
It's a long story that normally I'd share (what's a blog for, if not to indulge in the long story?), but I feel crappy. Shitty, actually.<br />
<br />
In short, I was diagnosed with Hashimoto's thyroiditis. This is a disease in which my autoimmune systems has decided my thyroid needs to DIE DIE DIE! and goes on the attack until it is completely destroyed. There is no cure. Some fortunate people are diagnosed early in the disease and are medicated with gradually increasing doses of thyroid hormone to compensate for the doomed gland and it becomes no big deal. However, I've likely had this disease for over 20 years, and it was only diagnosed when things got so bad it interfered with function.<br />
<br />
I have literally every symptom of Hashi's listed on the WebMD and MayoClinic pages, and seem to be enjoying the more unusual swings of going hypo- and hyperthyroid. This means at times I am drunk-overtired and severely fatigued (I've heard it described as three steps ahead of a coma), throbbing with severe body aches, constantly freezing, and gaining weight despite eating light and healthy, as always. Then, in the span of a day (or even less), it'll swing the other way: I'll be jittery, with a resting pulse around 110, and annoyed by ridiculously shakey hands and constant heart palpitations. During that phase, I'll drop up to four pounds in 36 hours. From what I understand, the hypo phase is when the thyroid is under attack during a "flare up," and a hyper attack is when the still-valiantly-if-hopelessly-trying-to-function thyroid swings into overdrive trying to compensate. Severe headaches, paper-dry skin, chest pain, foggy vision, inability to concentrate (that one <i>really</i> grates me), thinning hair (AWEsome), seriously funky muscle weakness, a chronically hoarse voice, and joint aches join in the fun on a regular basis.<br />
<br />
What I struggle to understand is why I've felt progressively worse in the last three months. It's gone from infrequent sprinklings of bleh to impossible-to-function periods that are becoming closer and closer together. The last month has been really, really rough. <br />
<br />
I'm in the midst of testing and specialists. A thyroid ultrasound revealed a solid nodule on the left lobe, in addition to the thyroid having a general appearance "consistent with diagnosis." Now, a nodule is not unusual in this condition, but a singular solid one is. Multiple, fluid-filled cystic ones are more common, and more typically, benign. Singular, solid ones are more likely to be cancer. Suuuuuper. Not that I'm in a panic of "OMG! CANCER!" More like, "Ah, FUCK ME. A<i>nother</i> physical set back?! Can I just go on about my life now?" <br />
<br />
Still, while statistically it is more probable to be cancer in a patient like me with the symptoms I have (and their increasing magnitude and frequency), it's <i>still</i> also statistically unlikely to <b>be</b> cancer. Numbers are my friends (teaching math and all), so I understand the logic. Even emotionally, I understand.<br />
<br />
I've started medication, but it's a low dose and will take about another month or so for me to see results. But hey, at least I'm on that road as opposed to trying to find it. Next up is an appointment with an endocrinologist to determine if the nodule will be biopsied (I'm going to push for it), while also going over some quizzical blood test results that point toward yet another possible autoimmune disease. (I was told ADs are like potato chips--you usually don't have just one.)<br />
<br />
Thing is, I'm seriously pissed I'm not out riding my horse. I miss it. I need it. Yet at the same time, no, no I'm not. I'm too tired and worn down to get upset, which is, intellectually, <i>more</i> upsetting. This is particularly the case considering nearly all of my physical energy has gone into going back to the classroom this fall for the start of a new teaching year, my muscle weakness and general physical fatigue has reached the point where, shockingly, I don't want to ride. I can't imagine having the energy to. Hell, I told my hubby you know I'm feeling shitty when I say I'd rather lie on the couch than go just sit in the shade at the barn.<br />
<br />
Part of me is feeling a certain amount of despair and wants to just quit. Sell Trilogy, maybe keep Firefly for the boys, maybe not. Give up.<br />
<br />
That's my body. My heart can't bear it. Although right now, I'm too tired to feel that heartache.<br />
<br />
I understand my health needs to take priority, and Tril and Fly will be okay as long as their needs are met, but I'm exasperated that I have finally started getting back in riding shape, finally making that connection, finally learning Tril's language, and <i>boom. </i>Right now, I don't even want to go to equine message boards or read horsey magazines...I don't want to be reminded of what I'm missing. <br />
<i><br /></i>
Believe it or not, this is the short version of the story. The long one goes into the ER visit, and the cardiologist, and the heart rhythm specialist, and then goes back even deeper into the doctor-visits-that-went-nowhere-but-showed-SOMEthing-they-couldn't-determine 20 and 15 years ago as symptoms first started appearing.<br />
<br />
I'd type more, but I'm tired. <br />
<br />
Dammit.<br />
<br />
I need to go watch some kitten videos.LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com0tag:blogger.com,1999:blog-8816589799315004018.post-46182651917333153362013-07-21T07:43:00.001-07:002013-07-21T07:45:04.714-07:00Just because your NAME is "Trilogy" doesn't mean it ALL has to come in threes!<span style="font-family: inherit;"><span style="background-color: white; color: #333333;">Update after Monday's vet visit: Good GRIEF my boy is talented. He had </span><i style="background-color: white; color: #333333;">three different things</i><span style="background-color: white; color: #333333;"> going on...mercifully, none of them serious and requiring more than rest.</span><br style="background-color: white; color: #333333;" /><br style="background-color: white; color: #333333;" /><span style="background-color: white; color: #333333;">1) His left front had a reaction to the Rap Last. The skin is red and irritated, but not swollen. Washing it off and hosing it, as I've already done, is likely all that was necessary there.</span><br style="background-color: white; color: #333333;" /><br style="background-color: white; color: #333333;" /><span style="background-color: white; color: #333333;">2) His right front--the big ugly swollen mess--was likely caused by some sort of blunt trauma. He kicked himself, he got cast, he...uh...yeah, we likely will never know. His tendons and feet are fine, and most lameness is gone now. The swelling and heat was still present at the time of examination, but significantly better. Treatment: more of what I've been doing. Cold hose, Bute, rest. A week later, it's essentially gone.</span><br style="background-color: white; color: #333333;" /><br style="background-color: white; color: #333333;" /><span style="background-color: white; color: #333333;">3) Now, what had me scratching my head--his slightly depressed demeanor. Apparently, he has a respiratory infection. No fever, no runny nose, but a bit of a cough. I noticed the cough in particular when lunging him yesterday to check for soundness--I showed the vet the video of it I made on my phone. He said it wasn't the normal throat-clearing cough some horses do at the beginning of exercise--"Yeah, that's not normal." Just for emphasis, Tril did some coughing when I trotted him during his lameness exam. The doc listened to his lungs and said they were essentially clear, but there were some sounds at the beginning that he compared to an asthmatic reacting to a smoggy day. There's been a mild respiratory thing going down the line of the properties, though the other two horses had snotty noses. Maybe it just went straight to Tril's airways--like these dang bugs tend to do with mine??</span><br style="background-color: white; color: #333333;" /><br style="background-color: white; color: #333333;" /><span style="background-color: white; color: #333333;">This means Tril just needs about two weeks of rest. Not stall rest, mercifully, but he shouldn't do anything that will increase his respiratory rate. Getting on and walking around with buddies will be fine.</span><br style="background-color: white; color: #333333;" /><br style="background-color: white; color: #333333;" /><span style="background-color: white; color: #333333;">So <b><i>WAY TO GO TRIL</i>!</b> Three different things going on. A "trilogy" if you would. </span><br style="background-color: white; color: #333333;" /><br style="background-color: white; color: #333333;" /><span style="background-color: white; color: #333333;">How typical of him. Nothing serious, nothing too difficult to treat, nothing major...just a whole lot of somethings.</span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #333333;"><br /></span></span>
<span style="font-family: inherit;"><span style="background-color: white; color: #333333;">And now, just five days later, he's a fire-breathing dragon. The swelling on the right front is gone, the cough subsided, and he is <i>done</i> with this walking crap. I lunged him a bit yesterday, and while he was more or less good (if a bit more deaf to commands than usual), I could tell he was on the verge of being a 1000lb kite.</span></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg7xh0X0D3to0YbIxGlT1ETbae_-0aiENf9KtCDAFHukOf6WSB4lnVHSvLF8f1GMn7WYZLNHNJrV3pxpcdCm5b3CLYD6Y7GtsQEekjb2tAh8ck6UuMIP_xycR-IQbr25YgnLUnuIMqaU8/s1600/flying-horse.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg7xh0X0D3to0YbIxGlT1ETbae_-0aiENf9KtCDAFHukOf6WSB4lnVHSvLF8f1GMn7WYZLNHNJrV3pxpcdCm5b3CLYD6Y7GtsQEekjb2tAh8ck6UuMIP_xycR-IQbr25YgnLUnuIMqaU8/s400/flying-horse.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>I love the mildly annoyed handler's unruffled and unimpressed expression. </i></td></tr>
</tbody></table>
He also didn't cough once on the lungeline, so back on the property I took his halter off and let him snort and gallop about just to run off the stupids. It's a catch-22--he needs rest, but he also needs to not <i>lose his mind</i>. <br />
<div>
<br /></div>
<div>
He was sound, snorty, and happy, but I didn't let him do too much. While he grazed-twitched-spooked-galloped-rolled-repeat, I turned my attention to cleaning his stall...and, yeah. Boy is BORED. His poop was scattered all throughout the stall, a sign of a bored horse pacing and kicking his crap all over the place. Oof. I'm glad I let him out, if however limited.</div>
<div>
<br /></div>
<div>
Two weeks of this? Really? And we're not even done with week one? </div>
<div>
<br /></div>
<div>
I don't know which one of the two of us is going to need that calming supplement more.</div>
<div>
<span style="font-family: inherit;"><span style="background-color: white; color: #333333;"><br /></span></span></div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com1tag:blogger.com,1999:blog-8816589799315004018.post-51648963868125032172013-07-13T21:27:00.001-07:002013-07-13T21:32:57.169-07:00Well, CRAPPITY CRAP CRAPIt has been established here that Tril is skilled destroyer, but not due to malicious intent. No, Tril is a sweet, but endlessly curious, goofball. And while curiosity is reputed to kill the cat, cats are also reputed to have nine lives to balance out that equation. Horses seem to have a most tenuous grasp on the one life they've got.<br />
<br />
After I returned from brief vacation, I gave Tril a sort of play and spa day. Rather than get straight to riding after four days off, I took him out, secured the polo wraps, and turned him out to play. Cracking the lunge whip a few times to encourage him, he galloped and played with enthusiasm, but not over excitement. A few times in his exuberance, I heard his hooves clapping together as he tangled and untangled those limbs, and while I noted a minor cut on a rear pastern, no damage seemed to be done. I did think about bell boots--which are designed to protect against this exact type of injury--and wondered if they are designed to work on hind feet as much as front. Bah, I thought, that's for another time.<br />
<br />
I hosed him off, groomed him thoroughly, and brought out his wardrobe. Fly sheet, check. New hock boots (the type to protect against bed sores), check. Fly mask, check. Hmmm...the flies were really biting his front legs, too--time to take out his fly boots.<br />
<br />
Now, again, it also has been established Tril is very skilled with that mouth of his. Leg wraps and boots, left unattended, are for shredding and entertainment. (Ditto reins, lead ropes, hoses, sprinklers, water fountains, jump poles, mounting blocks...) Oh, but I've got you all figured out, Tril-man. I have discovered RAP LAST!<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZaANh34UXlcsEpJs-Qejxxhso3vBYWV0y_Pk1v0s3qqQ1JJM9WEU1Qxz_jj03h63FjLAPiskb9AnpmTlof2iKQiIM93IVBV5OLAY-kjSqnypLlQYB97HIuP1hst_tTf-SZmgJw9IAtVc/s1600/Rap+Last.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZaANh34UXlcsEpJs-Qejxxhso3vBYWV0y_Pk1v0s3qqQ1JJM9WEU1Qxz_jj03h63FjLAPiskb9AnpmTlof2iKQiIM93IVBV5OLAY-kjSqnypLlQYB97HIuP1hst_tTf-SZmgJw9IAtVc/s320/Rap+Last.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Now with more capsaisin for your mouth-burning pleasure</i></td></tr>
</tbody></table>
Yeah, wanna chomp on those fly boots? Huh? Sound like fun? Hmmmmmmm? <i>Well, </i>get a solid bite of habanero-flavored OH NO YOU DON'T!<br />
<div>
<br /></div>
<div>
So after two hours of playtime, grooming, and attentiveness (incidentally, my eldest was showering our mini with similar attention, exercise, and affection, so she wasn't left out), I left feeling like Good Horsey Mommy.</div>
<div>
<br /></div>
<div>
Then I arrive today with eldest, all set for me to ride and then eldest to ride in his new Wintec saddle, and I am happy to see both front fly boots are on. The hock boots fell off, but what<i>ever</i>, 50% success rate is good for me.</div>
<div>
<br /></div>
<div>
Then I take the damn fly boots off.</div>
<div>
<br /></div>
<div>
What the fuck is THIS? No, seriously...the <i>fuck? </i></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5_SW3Xd1powXGYcBA6wRONk6lCbinQHAcB32pvyswlwxt2xXaXsZUVSYNgoRAis8RvVXE-mfIMcbKkdrLrVUWGHCwj9E3Vynljbwqf9m7JdFu1eWEL2DcBfCUYbGTT7NXN2OvkygbDLQ/s1600/IMG_1405.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5_SW3Xd1powXGYcBA6wRONk6lCbinQHAcB32pvyswlwxt2xXaXsZUVSYNgoRAis8RvVXE-mfIMcbKkdrLrVUWGHCwj9E3Vynljbwqf9m7JdFu1eWEL2DcBfCUYbGTT7NXN2OvkygbDLQ/s400/IMG_1405.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Puffy McPuffy Ankle is puffy</i></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOQhLRVuILD9U7A2wZswRiWxwDfkumq1nh3SUgohWmAl-DpPlbvfeoIt2YW6DhhnQG6mj56o5e8ybDFRytuypJ4gL8cYbLYXat5AwO2Xf5wfQVO7tgZEYZisZAr5qu9PRW1wsjwTByXXw/s1600/IMG_1406.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOQhLRVuILD9U7A2wZswRiWxwDfkumq1nh3SUgohWmAl-DpPlbvfeoIt2YW6DhhnQG6mj56o5e8ybDFRytuypJ4gL8cYbLYXat5AwO2Xf5wfQVO7tgZEYZisZAr5qu9PRW1wsjwTByXXw/s400/IMG_1406.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Um...there shouldn't be a bump <b>in front</b> of the fetlock joint! Learn from your white-footed friend there. See? No bumpy in front. Everyone's doing it. </i></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL__mOYO6O-wM7hAkXMru4qSGorqlhmwADJiyWYLiet1YdMdNZJfy_3x8fBa5LAnV8dM_f9pFOJFdR4lFhIi8MWdiXhm1wIzx_mC_C5hg3WqFe_XKT1LaIKFZyo2_JHJVJLkIOTtVAXxk/s1600/IMG_1438.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL__mOYO6O-wM7hAkXMru4qSGorqlhmwADJiyWYLiet1YdMdNZJfy_3x8fBa5LAnV8dM_f9pFOJFdR4lFhIi8MWdiXhm1wIzx_mC_C5hg3WqFe_XKT1LaIKFZyo2_JHJVJLkIOTtVAXxk/s400/IMG_1438.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>CRAP</i></td></tr>
</tbody></table>
I take that left fly boot off, and gasp. His ankle is a puffy, boggy, hot, pulsing mess. CRAP.<br />
<div>
<br /></div>
<div>
Seeing the right front is also a teensy bit puffy and appears to have sweat marks or somesuch on it, I assumed--hoped--his skin was reacting to the capsaisin-saturated Rap Last. I first lunged him for soundness, and as has to be obvious, he's lame on that leg. <i>But</i> he's not horribly lame on it; when my mare tore a tendon sheath, she was head-bobbing lame even at the walk. This was definitely a bob of the head, but not a dramatic UPdownUPdownUPdown of extreme ouchiness.</div>
<div>
<br /></div>
<div>
CRAP.</div>
<div>
<br /></div>
<div>
I cold-hosed the leg (rinsing the other leg as well), hand walked him, and gave him a solid dosing of Bute. At this point, I was 75% believing it was a reaction to the Rap Last.</div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXf9mfuCfBWrUop1kDBxCComV6NLvXEtitNtQb_wS415RervsF0WL8-It3o0kkfIrdD2hsVZDWXbTpaZhScGgxHYf9X7_QDZMKiopqonrLtIe6X7f7NBfybI7z0bdtuxi7y6dLxvIBtio/s1600/IMG_1418.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXf9mfuCfBWrUop1kDBxCComV6NLvXEtitNtQb_wS415RervsF0WL8-It3o0kkfIrdD2hsVZDWXbTpaZhScGgxHYf9X7_QDZMKiopqonrLtIe6X7f7NBfybI7z0bdtuxi7y6dLxvIBtio/s400/IMG_1418.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i> Uh, Tril, trying to help you out here. </i></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ4RlxnXpWoK_9HddvfcC4GHkUe2Jhr9Lma9lsCqYYuA2RkBqFr5ciNCeLOLDe0kZEhIvZLDKAmr3tixv_E0XdNd5RksE8p_7VTbVthCCMxMAmsNW4ZwhFkJhaEGwpYmjwllvG3SBHnxE/s1600/IMG_1422.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ4RlxnXpWoK_9HddvfcC4GHkUe2Jhr9Lma9lsCqYYuA2RkBqFr5ciNCeLOLDe0kZEhIvZLDKAmr3tixv_E0XdNd5RksE8p_7VTbVthCCMxMAmsNW4ZwhFkJhaEGwpYmjwllvG3SBHnxE/s400/IMG_1422.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Okay, go ahead, have a drink. Over and over again. Okay...uh...okay, shall we get to that hot puffy ankle now?</i></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdkYcppgjCRTMDh5Fjihp4v6ULTFqZ1MtTDSFiVmd0-oTSwoF90-MPnaj-aEzNZ6hK_ke3ayai9k2sHs5RzDIKIX6XmrjKZNN9hoKBh8UnY8Kyu05r1TAQ6fw1rZ-StzBZcVjs8lPXFgM/s1600/IMG_1423.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdkYcppgjCRTMDh5Fjihp4v6ULTFqZ1MtTDSFiVmd0-oTSwoF90-MPnaj-aEzNZ6hK_ke3ayai9k2sHs5RzDIKIX6XmrjKZNN9hoKBh8UnY8Kyu05r1TAQ6fw1rZ-StzBZcVjs8lPXFgM/s400/IMG_1423.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i><b>CHOMP.</b> Well, I suppose this was an inevitability. Not only did he bite it, he like to play with his bite to make the water pressure change. Playful little big goofball.</i></td></tr>
</tbody></table>
<div>
Then I went back to feed him his dinner about 6 hours later, and saw it was <i>WORSE. </i>Forget crap, this has now escalated to aw, FUCK.</div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2VK5yBfWLM4gPBMJq6icqn1eJr6DIxLjQmMYGKklStl8ucg5SrEi4ITnKYXuRqq0pr_6JNaVIAAcNl25DRrvaMkKQ6OJCKguNkXm2dqgtGZSwVs3YWeSp3StHbDVwu0FWt1gYz8FwGsg/s1600/IMG_1441.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2VK5yBfWLM4gPBMJq6icqn1eJr6DIxLjQmMYGKklStl8ucg5SrEi4ITnKYXuRqq0pr_6JNaVIAAcNl25DRrvaMkKQ6OJCKguNkXm2dqgtGZSwVs3YWeSp3StHbDVwu0FWt1gYz8FwGsg/s400/IMG_1441.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>With his old healed splint and now whatever this is on the inside of his cannon bone, his leg looks ALL kind of ugly wrong right now. </i></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj06zo9zONm-hQWsfHpz4i_M66Q8bRWhkBwsurEvjsJx-aEL2-QGUCLHSrwvWQ-GYXF1VySoq_UU1DVmMXYojtG1f_CaHM57fk1gvbaKwxw6t6LnNqXEpyf-zSfDDFLkbs5HJ0g7wtprpg/s1600/IMG_1442.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj06zo9zONm-hQWsfHpz4i_M66Q8bRWhkBwsurEvjsJx-aEL2-QGUCLHSrwvWQ-GYXF1VySoq_UU1DVmMXYojtG1f_CaHM57fk1gvbaKwxw6t6LnNqXEpyf-zSfDDFLkbs5HJ0g7wtprpg/s400/IMG_1442.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>The white foot is a little puffy too, but not even half as bad as its neighbor--which has lost all definition. Shouldn't I see tendons and things between the knee and fetlock? CRAAAAAPPPP</i></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfa_-U6GbpLiGGoJTu0fvxWl948CC0cA73bo4nwmotOrln_ZLPPFcj2Rt6DfM4-rgJdtuf9_tGLyQuFCBKvXXtTXp3Sva7f2aX0KvUP0p5oFYlyLFuLSfUKFf6Qn4TmTGL3zgtByjc_xQ/s1600/IMG_1443.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfa_-U6GbpLiGGoJTu0fvxWl948CC0cA73bo4nwmotOrln_ZLPPFcj2Rt6DfM4-rgJdtuf9_tGLyQuFCBKvXXtTXp3Sva7f2aX0KvUP0p5oFYlyLFuLSfUKFf6Qn4TmTGL3zgtByjc_xQ/s400/IMG_1443.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Oof. I'm gonna need a drink.</i></td></tr>
</tbody></table>
<br />
Holy shit, that is ugly looking.<br />
<div>
<br /></div>
<div>
This time I took him out for a more careful assessment, and found a squishy dome of not-supposed-to-be-here starting about and inch and a half below the knee. His ankle definitely was warm to the touch, but I no longer detected a pulse--which made sense, really. It doesn't appear to be an issue in the foot, but something above the fetlock. I think all that swelling is just being thrown down. Maybe. I dunno. </div>
<div>
<br /></div>
<div>
FUCK. </div>
<div>
<br /></div>
<div>
Time to call my vet. He found it hopeful that Tril isn't severely lame, and thinks it may be one of two things--a reaction to the Rap Last, or he kicked something. We're waiting until Monday for the appointment as long as he holds steady in this condition. I was advised not just to cold hose, but use soap and scrub the legs to ensure removal of all the peppery oils (well, DUH, of course--why didn't I think of that??), keep up Bute, and NOT to wrap his legs. Since Tril is a notorious standing wrap-rip-aparter, the vet warned that behavior can actually worsen an injury as he's pulling on tendons and everything else while getting his bandage chew on. Brilliant, Tril. Seriously, I've said it before--how the heck does Darwin keep missing you?!</div>
<div>
<br /></div>
<div>
So what did he do?</div>
<div>
<br /></div>
<div>
Did he react to the Rap Last? (I will be puh-ISSED if that $15 bottle costs me $400 in vet bills.) Did he get into "No, this is MY bucket!" bickering with his butt-biting neighbor? Did he get cast in his stall somehow and bang himself up extricating himself? Did he nail something more than a hoof in his overreaching, exuberant strides in turnout?</div>
<div>
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLiqF1C4kNrNRmgR51DVTmZE9bJ7BcLCjmKOajlFxEliHih1_hQzApBjuGF9qPsZKP3p-SV_FXVyTSiolfY70FN5xGYMC7gfUuV7139ErjnmoDIq6ZOIf6HR2Quq6eXSehj8Nlavc_8r8/s1600/IMG_1447.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLiqF1C4kNrNRmgR51DVTmZE9bJ7BcLCjmKOajlFxEliHih1_hQzApBjuGF9qPsZKP3p-SV_FXVyTSiolfY70FN5xGYMC7gfUuV7139ErjnmoDIq6ZOIf6HR2Quq6eXSehj8Nlavc_8r8/s400/IMG_1447.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>New marks above his eye and in front of his jaw. Clues? Or red herrings? </i></td></tr>
</tbody></table>
<div>
<br /></div>
<div>
Crap if I know. Crappity crap crap.</div>
<div>
<br /></div>
<div>
But, the thing is, if this had happened six months ago, I would have felt a different way. I've become bonded to him now, and really have come to appreciate and adore him. He's just the sweetest thing, if too curious and too playful for his own good on occasion. He hasn't a drop of nasty or malicious blood in him. Wary, yes; untrusting of people he doesn't know, true; but not the least bit unkind. But today, he felt secure enough to show me he was hurting. It was in his face, his eye, his movement. He, a prey animal, showed me the ultimate weakness for his kind. </div>
<div>
<br /></div>
<div>
It's okay, baby. No matter what has happened, we'll make it right. </div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4Hr3pDlS5vzNFopBNmkMEPCk4ZZmHubH99LvJ5ZpDPub8cZExVJc2nM9P2K9hXrzTHsY2Or0C3ACCM79VehVgJeLzxfnSgfX0nkgNgw4KpZQxhsRZnBqIGSQ1E11E4H8eS-NZS0hVrqw/s1600/IMG_1435.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4Hr3pDlS5vzNFopBNmkMEPCk4ZZmHubH99LvJ5ZpDPub8cZExVJc2nM9P2K9hXrzTHsY2Or0C3ACCM79VehVgJeLzxfnSgfX0nkgNgw4KpZQxhsRZnBqIGSQ1E11E4H8eS-NZS0hVrqw/s400/IMG_1435.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>I'm sorry, it's just what I do.</i></td></tr>
</tbody></table>
Just please...try not to do anything else to yourself in the meantime. <br />
<div>
<br /></div>
<div>
<div>
<br /></div>
</div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com1tag:blogger.com,1999:blog-8816589799315004018.post-56044425087480567762013-07-12T15:03:00.002-07:002013-07-12T15:07:35.228-07:00House shopping photo and description WTF?sWhile I'm on the topic of buying horse property, I <i>have</i> to vent my WTF??s at some of the photo choices--and wording choices--realtors put on their online ads for a property. Because, <i>seeeeriously.</i><br />
<i><br /></i>
I find that some realtors are inexperienced with selling, and thus marketing, horse property. It's not uncommon for the only horse-related photos of the property to be a zoomed in shot of the horse on site. Not the barn stalls, paddocks, pipe corral, tack room, hay storage, water and electric hook-ups--just the horse. Um...yes, he's cute, but he's not coming with the property--show us something, I dunno, USEful to us, eh?<br />
<br />
Then there are some that swing the pendulum this way.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYxTdl0Z9vTG-TaJNMq0eDWM5uqxxVC4QL_JbiDpsSV2gArS-piym6oSdeTeM9VuU-mJNZqbbFUVDWF6rRSMPEaHzjxwMJo1TI0DYnU05StXkeapWqlsGH7hPO7Ze6PNZVnCmEwhfF518/s1600/real+estate+WTF+1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="424" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYxTdl0Z9vTG-TaJNMq0eDWM5uqxxVC4QL_JbiDpsSV2gArS-piym6oSdeTeM9VuU-mJNZqbbFUVDWF6rRSMPEaHzjxwMJo1TI0DYnU05StXkeapWqlsGH7hPO7Ze6PNZVnCmEwhfF518/s640/real+estate+WTF+1.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Look! Bedding and we even provided...uh...moss? Mold? Styrofoam mountain? Easter grass?</i></td></tr>
</tbody></table>
Seriously, WTF? All the things they could show us, and they went for the floor of the stall? Which MIGHT make sense if it was showing stall mats throughout or something, but...uh??<br />
<div>
<br /></div>
<div>
(At least this place showed the barn and the rafters, as well as the arena. Not the fencing, water supply, tack room, or feed room, but at least evidence there is a place to keep a horse here.)</div>
<div>
<br /></div>
<div>
<br /></div>
LauRuffianhttp://www.blogger.com/profile/12704126006296273359noreply@blogger.com1