GoFundMe, Friends, Family, Gratitude

I have amazing friends.

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.

Here is a link to the GoFundMe page she set up for me.

Y'all are amazing.  Seriously.  "Thanks" does not begin to describe the depth of my gratitude.

And now, speaking of giving thanks, here are a couple of pics from Thanksgiving Day 2014. These definitely capture the spirit of Britvec Normal.

Just about the only kind of selfie I make, because the photobombers are so cute

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 swear, hubby smiles.  We joke he's like Agent Mulder--this exchange from the X-Files movie is the only thing I remember about it because it perfectly describes stonefaced (but handsomely so) hubby: "You were scared! You had your scared face!" "What?! This is my scared face!" :::completely expressionless:::  "THAT'S IT! That's the face you made!"

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.

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, CUTE.

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."

Relax, it's not brain surgery! Oh wait, yes it is...

Me and my Abby Normal brain.

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:

Braaaaiiins

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 any doctor with any 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.

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.

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.  

My, what pretty eyes you...ewww, never mind

 It repeated with the nasty headache I had after my son's Trunk of Treat Boy Scout event.

Appropriate for Halloween, I suppose

And really, has repeated to where it's a near daily occurrence--like my headaches, it varies in severity. Dude, the body is WEIRD.

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.

On top of all this, I was diagnosed with sleep apnea back in September and fitted for a CPAP machine.  That's just...weird. Apnea?  Huh?  I've never 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?

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.  

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. 

Brain surgery.

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.

But still... EEK. Especially considering the procedure he recommends involves cutting out the herniated portion of the brain. He said it has not function, BUT STILL!

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).  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?

There's no knowing. For now, I'm grateful just to be able to get back on him, when I have the strength.

So I did.

I was still smiling on the way home

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.

Tril also looks adorable in it.

He looks adorable in everything, actually

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.

Eep.

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 not 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.

New York--in freakin' January.  Yaaaaaaaay

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.

EEP.

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.

Of course, they had to thoroughly inspect it for carrots and peppermints

Worrying wastes my energy, which is in such precious supply. Breathe, be in the moment.

(Every now and then, that moment is full of EEK! and some tears, admittedly.) 

I have hope that my life can begin anew starting January 14.  Until then...breathe. (Freak out.)  Breathe.  (Freak out.) 

But--the day my surgery was scheduled, I had such a severe headache I couldn't 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.

I ain't right in the head. No really, I have proof!

Okay, so it's been a long time.  Like, a long 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.

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.

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.

The most problematic--in many freakin' ways--is the Chiari malformation.  The whosie-whatsis? Chiari--as in:

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.

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:

Ah, it's so cute

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.

Then there's me:

I actually fell asleep during this MRI.  Zzzzzz...

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.

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).

Look, arrows...oooohh

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.

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 lot 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.

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.

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.

Worse, though, is Chiari has the double whammy of being rare and 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 don't have a Chiari (yeah, no; three radiologists and two experts disagree).  

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 THE, 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 wants to know what is up with me. 

Hi, I'm Dr. Bolognese, and you're not

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 lot of patients can be left out in the cold in this approach.

Dr. Bolognese appeared on this episode of Mystery Diagnosis, describing and treating this poor girl's combination of Chiari Malformation and Ehlers-Danlos Syndrome.

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.

I sent him a few still images, including this one:

Seriously, world of Tron-weird, ain't it?

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.

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?

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 last 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.

But I'll be damned if I'm giving up my barn time.  Enter Firefly and harness-driving goodness:

"Waaaaiiittt...this is work, isn't it?"

We all know who the biggest horse is in this arena

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.

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.

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.

Happy trails are happier when there are treats involved

A conversation with Tril on the trail

Just about to start our "discussion"

Tril: "I'm feeling playful! Ooh...WHAT THE FUCK IS THAT?"

Me: "It's a manhole cover, dumbass, same one that was here yesterday."

Tril: "But it might eat me today!"

Me: "WHATever. Move on."

Tril: *pout* 

Me: "Dude, walk a straight line, would you?"

Tril: "But...what's THAT? And THAT? And..."

Me: "Knock it off. I know you're not actually scared. Walk a straight line."

Tril: "WHATTHEFUCK!" *props and freezes in place*

Me: "F'real? Tril, move forward."

Tril: "NO! There's a THING!"

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>

Tril: "OH! Oh. Oh, I see you actually mean it. Moving forward then."

Me: <rolling eyes>

Tril: "OHMYGODWHATTHEFUCK is THAT?" <spooks hard in place, spins on his haunches, tries to bolt home when a flock of birds take off--REALLY? BIRDS?>

Me: "Oh NO YOU DON'T." <shorten one rein, spin him back the other way, kick him forward> "Enough of this crap."

Tril: *sigh*  "Well...now I'm bored with this game because you won't let me play. I'll walk along at a leisurely pace, in a straight line, and on a relaxed rein now."

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.

"This is your new life now"

Freedom.
(Even Firefly can get all four feet off the ground at once, if motivated)

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?"

Well.  That's fitting, I suppose.  But it was a lot more entertaining when it was about random inexplicable swellings and vexing riding technique.

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.

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 bitch."  It's fibromyalgia.

Now, I hated hearing those words come through my rheumatologist's lips when she suggested that was my diagnosis.  Oh, hell no.  Fibro is seen by some as "not a real disease" and means just that "the docs haven't figured out what's really wrong."   However, that's been long since discounted in the medical field--it is a real condition, a real bitch of a condition, that as best can thus be confirmed is described as a neurological disorder relating specifically to the central nervous system.

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 hate 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.

Like many neurological conditions, it's a beast to treat.  (Or, perhaps again, a bitch.)  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 want to do, my body is positively screaming at me to lie down, NOW.   It's not "I was up late last night" tired, or "I sure had a busy day" tired.  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.  NOW. 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 maybe 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.

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.

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.

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 not 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 guarantees 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.

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, very carefully to my body.

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.

"This is your new life now," she told me.  I fought back tears as I nodded in agreement.

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 three 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 ridiculous.  What the fuck, body?

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.

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.

It's so difficult because what I want 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.

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.

Such a mush

"Pet meeeeee!"  Mush mush mush

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.

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."

This is my new life now.

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.

This is my new life now.  I'd best get busy living it.

Not 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.

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.

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.

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 could trigger a colic which could 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."

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?"

"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.

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.

"No...?"

"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."

I let my son ponder that the rest of the walk up the the pen.

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.

"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).

"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?"

"Yes, moving the mouth and licking and chewing," he confidently responded.

"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."

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.

"Don't let her do that--make her listen to you the entire time."  Away son went, making Firebutt move and change direction until once again she would listen.

The mare is leader no more

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.

A herd now complete

I glowed in pride.  After a little time, I asked my son if he was ready to ride Tril now.

"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?"

My heart melted.  These two friends had had their first fight, and now had made up, and were closer than ever before.

That's my fine young horseman.

Bonded even more closely than before

My body is SEEERiously pissing me off now

I 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.

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.

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.

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 really grates me), thinning hair (AWEsome), seriously funky muscle weakness, a chronically hoarse voice, and joint aches join in the fun on a regular basis.

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.

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.  Another physical set back?!  Can I just go on about my life now?"

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 still also statistically unlikely to be cancer.  Numbers are my friends (teaching math and all), so I understand the logic.  Even emotionally, I understand.

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.)

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, more 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.

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.

That's my body.  My heart can't bear it.  Although right now, I'm too tired to feel that heartache.

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 boom.  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.

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.

I'd type more, but I'm tired.

Dammit.

I need to go watch some kitten videos.