Laura's introduction to yoga, stream-of-consciousness style

Start in the what pose?

Chumbawumbuh-huh? Cobra dog thing? How the hell do I...well, this will have to do.

I don't bend that way.

Dammit, I don't bend that way either.

Warrior who? Reverse what?

DAMMIT, my upper body is in crap condition. Time to admit I can't hold this and wait this pose out.

I used to be able to do this.

DAMMIT, my balance is really screwed up. What the...? Fuck, is it screwed up.

Face down toward the floor...got it. I'm just going to be here and cry a little.

Okay, getting up.

What the hell happened to my body?

Hey, I know this one! That's in my physical therapy arsenal.

Wait, what did she say? What the hell is that?

I'm sweating. I've hardly moved--how am I sweating??

Hey, another physical therapy one!

DAMMIT my shoulder is noisy.

OW. Guess I should shift.

What the hell? I used to be able to do this too, like it was nothing. Definitely a something now.

What the HELL has happened to my body?

Face down on the floor for this stretch...okay, a few more tears to mix with the sweat, why not?

Not feeling sorry for myself, nope; modify and move on.

Oh, it's the chumbawumbuh-huh cobra dog thing again. 

Oh, looks like my hips are supposed to stay up.  Whatever, my hips are going to have to be down.

DAMMIT my arms suck.

Lying still and flat...okay, I got this one.

It's over?

Man...I can't wait to come back next time.

I've got thick skin and an elastic heart

You did not break me

I'm still fighting for peace

Well, I've got thick skin and an elastic heart

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.

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.

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.

I'm like a rubber band until you pull too hard

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.

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 pissed about the unfairness of it all, as though I'm owed fairness.

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. 

He gently reminded me that I can 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.

I agreed, it was, is, 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.

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."

That's it. That is it. That's it. 

The tears poured again.

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 was cannot be what now is, and I can't make it go back. 

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 want 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.

I'm well enough to miss what I've been missing.

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 living 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 that is okay.

Because I'm also well enough to live my life. 

And I know that I can survive

I walked through fire to save my life

And I want it, I want my life so bad

And I'm doing everything I can

An internal battle with one's inner self, expressed externally.

An epiphany or two, 30 years in the making: 6mo post-op follow up with Dr. Braaaains...erm, Bolognese

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'.

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.

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!

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.

New and improved labeled edition! The foramen magnum is the opening of the skull, labeled with the orange dotted line. It's easy to miss; I had doctors 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.

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.)

The brainstem needs room to PARTY!

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.

But, the more aggressive approach is, in his experience, the most successful. I'm seeing why.

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.

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.

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...

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."

I know, minions are a bit overly everywhere right now. But I like 'em and this is my blog, so there.

Yup. Now, Dr. B hasn't officially written down that I have EDS as which 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." (Oy.) Yes...sounds very, very familiar.

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.

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."

My jaw dropped. I hadn't mentioned my positive RF. He didn't know. And at the time, I didn't know.

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.

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. 

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.

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). Nineteen. Each one, taken individually, seems like a "Huh, that's weird," but together, they form a constellation. 

Thirty years of symptoms and history flooded me. 

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.

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.

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.

Then there are my extraordinarily flat feet, about which my podiatrist gasped, "I see flat feet every day in my practice, every day...but you, you're practically walking on your ankles." He was genuinely horrified and fascinated--my kind of guy, heh.

And my dislocating jaw that I have to sometimes manually put back in place when eating an apple (unlike my hip, that 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. 

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.") 

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.

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 was told by doctors on numerous occasions, "Eh, it's just how you are. You have loose joints. :::shrug::: " 

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.

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.

Dysautonomia.

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. 

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.

Oh.

My.

CRAP.

Ohmicrap.  

Once again, thirty years of memories flooded me, and the paralyzing shame and gut-sinking embarrassment I felt came with them.

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. Ohhhhh. 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 That Girl. The one that was rushed to the ER on a choir trip when *psshh* nothing was really wrong. I didn't hear what people were saying, but I knew what their words were.

I spent the following year getting my heart checked out and was diagnosed with mitrol valve prolapse  (which was just undiagnosed 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.

But still, I felt like That Girl.

Heat intolerance?

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 That Girl 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. 

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.

Still...I'm a wimp, I said to myself, and it and I'm That Girl 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'm weak. I'm just a whiner. Geez, can you say psychosomatic illness? 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.

...Low baseline temperature, yes, light headedness, yes, nearly fainting several times, yes, heart palpitations, yes, rapid heartrate...oh! Yes!

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.

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 awesome. 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 annoying when one is trying to rest, but not dangerous. Just uncomfortable. Boo.

...blood pressure issues...oh. OH!

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? Fascinating. 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. 

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 really 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 two hours. 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 That Girl 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. 

This was beyond shame. This was humiliation. 

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. 

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.

Decades of doubt, embarrassment, shame, humiliation 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 not be That Girl.

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 That Girl. 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 That Girl. I broke into violent sobs when I came home, shaken by this incident and the years of incidents before it.

Surely, since no doctors could find anything for all those years, it just meant I was crazy, right? Hyperemotional? Psychosomatic? Weak? Whining? Attention-seeking?  

Bury it. Hide it. Deny it. Push forward and ignore what my body is telling me, keep pushing, KEEP PUSHING, KEEP PUSHING! ...Until my body finally said enough was enough and pulled the rug out from under my life, demanding I see and deal with what is real and not in my head and not about a weakness in my character.

Chiari Malformation, type 1. Ehlers-Danlos Syndrome, likely type 3. Dysautonomia. This is what is real and true.

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.

In other words, educate. That I can do.

And that you can do too.

Your favorite Whackadoo

Happy 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!

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 Awakenings: "I'm sorry, but if you were right, I'd agree with you."

Six months today.  Holy crap. It feels like a lifetime ago.

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.

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 never come in. And we are going to find out what's wrong."

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.

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 silence.

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 alive. Everything about how I carry and present myself is different, My mom said the light is back on behind my eyes. I'm me. Heck, I've even had people tell me my tone in my Facebook posts has changed.

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 goes away. 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.

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.

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.

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, can be lived with and lived through. They're annoying. But I can live life.

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.

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.

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.

I can't have a exhilarating ride or workout, but even on my worst days I can walk the dog.

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.

I can go to car shows, theme parks, zoos, museums, parks, renting a scooter if need be but still going, and enjoying it, not just slogging through it.

I can watch movies on the couch with my husband.

I can go out for coffee.

I can live life, and I absolutely love it.

Happy six-monthiversary, babe.

Sometimes, there is no solution. CP Trilogy June 14, 2002 - April 12, 2015

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.

My head hurts. My heart hurts.

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 liked 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.  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.

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.

Everything about it was awful. Awful. 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 do this." 

My 9-year-old son was adamant he get some final pictures with Tril before we put him down. 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 eyes were tired. Sad, even. I suppose if there were a picture of my eyes, they would have been too at the time. Well, and now, too.

Final moments--I can hardly look at this

Here's the pair in much happier, healthier circumstances, just 10 days prior.

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 our pet, and you're my mom, and I don't want you to be alone in this." The heart, it broke. I accepted this and explained briefly what and how things were about to happen.

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.

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 reason 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 years, and admittedly, the idea grew on us until we caved. Moe is technically his goat and his gift--he picked him out himself.)

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 her colicking now is too much to bear, so I'm doing what I can to prevent it.

I am ready for my close-up. And that peppermint you're bribing me with to get the cute picture.

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 shocked how much she was taken to the goats.  Shocked! She let them share the hay with her. She shared FOOD.  Firefly! She who makes sure all horses are at least 20' away from anything edible! Sharing food!

Photographic proof

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.

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.

I understand. I miss him too, girl.  I miss him too. 

It wasn't supposed to be like this.  I'm so sorry, Tril, it was not 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.

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.

Post Op Week 7: Opening up dirty windows and letting the sun illuminate my words, and world

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. 

(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.) 

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. 

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.

(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. 

No matter where you are in your life, today is a blank page--where your book begins.The rest is still unwritten.)

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. 

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. 

But that isn’t me, and that isn’t my reality, and I am grateful.

This, however, is me, seven weeks post-op.  The scar is slowly fading as hair grows and the incision heals.

Is it weird I kinda want the scar to be more visible and less hidden?

Rather...interesting hair cut, hmm? Gonna be a bit longer before I can rest my head in a hairdresser's shampoo sink though.

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. 

So, until next time—continued love, appreciation, and gratitude to you and yours.

Adhesions are NOT endearing--but they tell an enlightening story

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. 

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." 

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. 

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. 

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." 

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...) 

Oh, and incidentally, the arachnoid membrane is called that because of its resemblance to a spider's web. :) 

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! 

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. 

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.

Five Week Post Op: Surgical Report reports

Five weeks today. Cuh. Ray. Zee. 

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. 

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. :) 

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. 

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. 

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. 

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. 

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. 

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. 

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. 

BUT. 

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). 

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.* 

Besides, this is only week five. 47 more to go. 

Hugs, love, and gratitude to you all.