Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.
About 33,000 Americans are currently disabled as a result of this rare neurological disorder.
Not one person with TM will ever know their prognosis.
I happen to be one of them.
I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. Yeah...life sucks, but I still rock.
...Another very telling ignorance - I don't even know when it's a national (or maybe even world wide?) day in celebration of me - and many of you who read Neuro Detour or know me personally, know that I'll find any excuse to celebrate. And when I say celebrate, i mean CELEBRATE.
The linked article (click on the title of the blog) is written by a fellow rare-disease-fighter, Wayne Brown of Buffalo who has Acromegaly. While, he may not be as rare as we TMers, take heed. He's good. He's right on. And, he's published! Congrats and thanks, Wayne.
What he didn't say, but I will:
Go buy some champagne (Freixenet works on most of our budgets :) ) and take the day off from being sick...if you can. Let everyone around you do everything you need or would normally do today.
Do nothing but relish in YOUR day.
PS I think all of you non-rare-disease sufferers should also celebrate this day by sending cards filled with money - lots and lots of money - to your favorite rare disease sufferer(s). We're most likely on a tight budget and a little (or lots and lots of) extra $$$ for bills, insurance, meds, or equally important, some self-indulgence is just one way you can make a difference.
Another option is to take that money and donate it to the charity that is working to cure their illness. Whether you're the sicko or the sickee, today's one of many days to do something good.
If I'm up to it, I'll be at the rally in person...if not, in spirit for another Melanie who's been screwed by the healthcare system (with much more deleterious results)...and for everyone who deserves accessible, affordable health care. Wanna join me?
Here's the DL...
Rally for Health Care Reform and the Progressive Agenda
For more than a year, we've mobilized to reform health care, rein in Wall Street, create good jobs, win workers' rights, and combat global warming. We're tired of waiting. So a group of Pennsylvanians are marching to Washington to say:
We voted for change. Get it done now. Get it done right.
We are Marching to the Finish Line for Melanie Shouse. Melanie passed away last
week. She had been fighting against her insurance company for chemotherapy coverage and with all of us for heal
th care reform.
Marchers will be leaving Philadelphia from this Rally to begin a 8 day, 133 journey to Washington, DC for health care reform!
Rally: Mother Bethel AME Church, 419 S. 6th Street, Philadelphia
Wednesday, February 17, 12:00 Noon
Help Send off the Marchers! You can even walk part of the way with us.
Yes, I admit it, I am one and I see them too, those buggy bug-like-snake-like-and-occasionally-verminesque dashes of absolutely nothing that dance like kittens on catnip, and according to "Expert Advice", there are no medications or supplements proven to treat or remove floaters - neither the human kind or the trippy eye kind. Yep, that's definitely me. (And so is the fact that I find this site on Now You Too Can Live A Life Without Floaters LOL funny.)
So, despite the shite (the rhyme was beeeegggging me) of life as a neuroquadrilogical (a neuro-ite with 4 disorders), apparently I, as a human I, am neither removable or medicable /ˈmɛdɪkəbəl/ Show Spelled Pronunciatio[med-i-kuh-buhl] (this is a real word).
Note that this post is being written at 8:30AM, and it's not the I'm waking up for work, or my morning power walk, or jaunt to the coffee house to get the best seat by the cute guy. No, it's the...
Why?! you ask with mouth agasp astonishment, even though I witnessed a beautiful sunrise.
You just got out of a 9-day hospital incarceration, Melanie! you proclaim (I write redundantly, duh, there's an exclamation point, BUT think of that as your memory on XYZ neuro disorder, and maybe you'll understand me a little better).
You had a Lumbar Puncture, EMG, a hemoglobin count of 6.4 and an iron count of nearly nil, 2 blood transfusions, and a 2-hour fistula surgery (see gross video below) in your RSD arm, which became both visually unappealing and very RSD-y post-op requiring IV morphine (ahhhhh) to quell the pain! you castigate with love and a tiny dose of compassion.
You have RSD, since when did you have RSD? someone out of the cool people's in-the-know loop, inner-looplessly interjects.
That's the 4th -osis in the neuroquadrilogical grail, some do-gooder, yet somehow cool enough to be in the loop-er whispers under the raging voice of the still unnamed and determined sleep-begetter as though he OR she were Morpheus in the flesh.
Your osteoporotic /ˌɒstioʊpəˈrɒtɪk/ Show Spelled Pronunciation [os-tee-oh-puh-rot-ik] bones need to dream, and even tho it's contraindicated that your osteopenic bones hit-the-sack too, hit that sack, baby, I said hit it, you shout with growing fervor, fever, and a bit of kinky excitement.
What I meant to say is, umm, errrr, you need, I mean, really need, your beauty sleep, you whisper trying not to sound perverted, invested, or ridiculously and/or inappropriately judgmental.
Here's the dealio. Up, Down, Sideways, or Snowfallen, YOU SHOULD be sleeping!!!! you prod as if I chew my cud. As though you could even play a doctor on pay-to-be-on-it TV (I think with a 3-snap-Z).
And now you're nagging. And all sickos; friends and family of sickos; and doctors, nurses, and caretakers of sickos know - don't nag the sicko.
But wasn't that a fun way to let you know what I've been doing for the past week and a half!
DIG MY FLOAT
To clarify my opening statement, I am undoubtedly a floater. I float between home and hospital. I float between reality and the occasional hallucination or delusion (don't worry, now I know it's NOT 1985). Meds do not work their magic on me, so I float between sleep-time and wake-time, all of which is in-pain-time. My life as I knew it or want it to be is somewhere afloat, so I also float between treatment plans, treatments, med changes, flair ups, relapses, and/or exacerbations. I lay on my couch more often that I care to admit as though I am floating, nothing touching my skin, causing me pain. And my train of thought is super duper floaty (sign: I'm stretching the metaphor...STOP HERE).
IN ADDITION TO THE ABOVE RANTS AND INTRODUCTIONS,Due to a recent flair up that included insane pain down what felt to be my swallowing path, the inability to exhale or speak or swallow, dizziness, and some other strange happenings, my fabulous and famous neurologist, Dr. Schwartzman, had squeezed me in last last [sic] Wednesday for an emergency visit. The result:
Back to the hospital I go. And I was admitted Monday for what was supposed to be a few-day stay. I know by know to use a variety of complex mathematical equations to estimate the actual duration of my hospital life.
I had my fourth spinal tap, which coupled by watching the video below now makes me certified to begin giving LPs to any sucker; got my 2nd round of blood transfusions; my 2nd EMG of my life (the worst test ever) tho I was spared the needle jiggling in the nerve ending 2nd half; had my regular IVIg therapy; had consults with a hematologist, my rheumatologist, a podiatrist (don't ask), and a couple other 'ists and 'ents; and a bunch of other stuff including having way too many hot flashes for a gal my age. I have a lot of follow-ups in the forthcoming weeks. And hopefully, they'll be able to figure out the cause of my new-found chronic anemia.
I almost made it the entire stay without a roommate (yippee!). And just as my mother had warned the staff as they began preparing the room for a 2nd body while I was in surgery Monday, crabby Melanie returned from the OR and reared her wormy, bruised, apple-ish head, but nothing that a hug couldn't overcome...and a xanax and migraine meds. I could go on about my lost sanctuary, and it would be funny, but it would be mean too, so I'll bite my fingers, and just say, you had to be there (and I might mean that in more ways than one).
On Tuesday, I was discharged from the hospital by a soon-to-be-remiss resident without any scripts, including one for pain meds for the fistula surgery,
(Wikipedia: In medicine, a fistula (pl. fistulas or fistulae) is an abnormal connection or passageway between two epithelium-lined organs or vessels that normally do not connect. It is generally a disease condition, but a fistula may be surgically created for therapeutic reasons.)prescription-strength iron for my red-blood cell-less bone marrow, or that Sally Fields medicine or something like it for my oustish steroid-chemo habit that has left my hips and spine as delicately vitreous as any kind of wine glass - cheap, semi-cheap, restaurant-grade, or imported from the glass capital of Europe expensive - in my incapable hands.
Author's WARNING: This video may be deemed gross by people as hardcore as even me. I lived through it, but thanks to modern bliss, I didn't see it.
But, most importantly, as always, my mother was there for most of the journey of what may be my 5th or 6th (I've lost count) extended hospital stays, as were a select few of my most supportive (and available) local pillars who visited as often as daily (can you believe it!), and many more by phone, text, or mental telepathy (i.e., I'm giving you an out...take it). I made a new and amazing neuro friend. And this time, Dr. S finally made some headway on his promise from almost a year and a half ago of having cute interns.
PS I'm sure I'm forgetting important things, but by now you know better than to expect me to remember much.
PPS This post totally qualifies as a "My Life Sucks But I Rock" post.
PPPS Maybe now that I have some red blood cells, I'll find the energy to write more.
PPPPS I'm not making any promises.
PPPPPS This is my arm today(!):
To play the slide show, click the big play button in the center of the screen, then the small one in the bottom left corner. Click here for more advanced viewing instructions, and select "Help."