The Days & Nights, Slants & Twists, & Wobbly Meanderings of a Woman With Rare & Incurable Neurological Disorders
Living Obliquely
Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually. 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.
ALSO, even though yesterday was the official Scatterneuries deadline, I'll extend it until Monday for those of you who are dying to take part in this brand new online game.
This one is boobalicious.
*****
UPDATE 7.16.10
With 2 weeks of plasmapharesis, followed by a nerve block surgery(link warning: video of actual procedure) of my left arm, and 2 days of ketamine boosters, I have not felt this good in a while. My pain is down to a 6, and I'm actually able to enjoy being awake, walking around, and I'm going to paint today for the first time since this last flare-up, which started over 2 months ago.
Unfortunately, my ketamine boosters will be further apart from now on because the drug can cause liver damage (and it's basic scheduling protocol), and if my LFTs are adversely effected, I can not get treatment for 6 months.
Since I've been receiving ketamine, the positive affects (if any) have lasted no longer than 1.5 weeks before they started to dwindle. This last month-long wait was excruciating. I don't know what to expect, or how I will handle, managing my pain with this longer break between infusions.
Normally, follow up boosters at this stage are every 3 months, however, we're going to try for every 2 and hope that my liver can take it. But since the nerve block worked, I'll probably be getting one every 3-4 weeks.
The good news is, the doc, Dr. Goldberg aka Dr. G, is super cool - like hip hipster in scrubs cool, the hospital in Camden, NJ is actually gorgeous (despite its location) and amazingly stylish for such an icky institution, and they have the best hand sanitizer I've ever used.
The healthcare update posted below just came to my inbox from Families USA. It provides an opportunity for ALL HUMANS - sickos like me and non-sickos too to state their opinion(s) - no matter how misinformed.
In addition to Families USA, I have a mini-health-update myself: Despite my extraordinary-symptom-of-the-day-semi-blindness, I am struck by the responsibility to share this (also extraordinary sans malaise) opportunity, and type, copy, past, etc. in the metaphorical dark.
Healthcare is NOT just an issue of the sick. To paraphrase House (famed British comedic actor Hugh Laurie) from the widely top-ten-listed TV show named after its main, ever-so-charming, cantankerous, god-like, hot-to-the-mom-and-grandmom-and-me-demographic doc (pictured right; with whom I feel solidarity ala his own gimpiness and decked out cane, and in the bigger "picture", story-lines by which I identify with as look honey! that's a quantam physics version of me in that myoclonic, neuro-soup, experimental treatment state!):
Whether you're sick or not, we all die.
Nobody dies with dignity, we live with dignity.
HERE & NOW: Sit on your ass. Don't be a lame-ass. Just a few inches below is your opportunity to make a personal request to the US government as to what kind of dignity you'd like to live with.
Whether you're a rich, selfish f*cker against any healthcare reform; chronic gimp on long-term disability with ever mounting medical bills who wholly supports and pines for the current/forthcoming reforms; or if you're someone waffling somewhere in between and want some tweaking, clarification, or an opportunity to vent...
This may be you're final chance to get on your ass, click whatever links appeal to you, and speak (persuasively) to get what you want for once out of this whacky system. Isn't that worth 5 minutes of your life?
I'M NO DUMMY, BUT I DIDN'T MAKE IT THROUGH WAR & PEACE EITHER. You're far from rare, if you're thinking that there are so many intricacies that it's hard to know what's good for me, my family, my friends, the economy, my pocket book, my tax return, my sore bum from sitting in front of the computer too long reading blogs (hopefully THIS blog), etc., etc.
Sing with me: I say, huh?. You say, heh?. We (all) say, what the fu**?.Kum ba yah, Kum ba yah, you cheesy piece of stale granola. Don't let your ignorance dissuade you. Yours, mine, or our freakin' government's.
Even I - Melanie Miller, full-time patient, part-time activist and healthcare spokesperson, and, if I may toot my own fistula: internationally quoted sicko* in AP (and not so AP) health news article(s) - must claim such ignorance and step down from my post of all-knowing-neurologically-induced-psychicism, say (to myself - and not in a state of neuro- or sepsis-induced delirium) what the hell, I've looked and sounded like a dumbass before, and state my concerns with earnest, spell- and grammar-checked, concise devotion.
*(to be enlightened, proud, or quell your curiosity and boost my ego, click on prev. link to go straight to article, or browse back posts to see: 6.12.10 post, Melanie Quoted in Assoc. Press (AP) Article on Healthcare!)
Dance with me, won't you dance with me? I'd love for you to join me on the virtual political interface that enables anyone with access to the Internet to express themselves. If you post your status on Facebook, you might as well post it somewhere that will make a difference.
And I will join you too, even though the mightiest spell-checking tool will do me no good for at least today, since I'll either forget to do it, or the all-encompassing vision impairment that is a common and disabling side effect of many neuro disorders may require a respite from saving the world from itself.
AUTHOR'S SIDEBAR...WITH RULER IN HAND Awwwww, don't yinz, y'all, yous guys feel bad for me and my homies? You better not! We HATE pity.
But we do welcome subtle compassion, offers for trips to the grocery store and/or apartment cleaning, temperature-modulated outings, and boyfriends that don't run when our face blows up like the Stay Puft Marshmallow Man.
FINALLY, THE MOMENT YOU'VE ALL BEEN WAITING FOR....
SUBJECT: Opportunities to Shape Federal Decision-Making
Dear [INSERT YOUR NAME HERE],
Last week’s July 1 implementation milestone brought many opportunities for state advocates to help shape the new law. We are fortunate to be working with an Administration that continues to solicit input and feedback. Here’s a rundown of some recent requests for public comment. If you haven’t already, please provide your suggestions to help optimize the new law for consumers.
The Departments of Health and Human Services, Labor, and Treasury released several regulations to implement a new Patients’ Bill of Rights under the Patient Protection and Affordable Care Act. The regulations will prohibit discrimination based on pre-existing conditions for children; ban lifetime limits on coverage, as well as place restrictions on annual limits; forbid unfair rescissions of coverage; restrict cost-sharing for emergency services; and put into place many other patient protections.
Comments are due by August 27, 2010 and the rules go into effect September 23, 2010. You can either comment directly to HHS or share your comments and concerns with Families USA by emailing us at stateinfo@familiesusa.org.
And, if you have not already commented on previously released regulations, you still have time! The interim final rules on dependent coverage and grandfathered plans are still open for comment until August 11 and August 16, respectively. Information on all the rules can be found here. Families USA has compiled our comments on dependent coverage, and we’ll be posting our comments on other regulations to our website as we complete them.
On July 1, the Administration also launched the web portal, www.healthcare.gov, to help consumers navigate their coverage options and understand their rights under the new law. As you navigate the site, you’ll see many yellow comment boxes to submit your suggestions. While healthcare.gov is already a tremendous clearinghouse for information, please provide any insights you might have to make the site even stronger. Families USA is also compiling comments on the web portal for the Administration. Please send us your thoughts at stateinfo@familiesusa.org.
To stay up-to-the-minute on health reform implementation, please also sign up for email updates at www.hhs.gov and www.healthcare.gov Thanks, as always, for your continued hard work. We’re glad to be working hand-in-hand with you to make the most of the new law!
To those that are getting on their asses to get off their asses, I extend my gratitude. For everyone else, maybe you can garner some appreciation next go. Regardless, feel free to POST copies of your messages as a comment, or copies of your brain waves that induced your inactivity.
AUTHOR'S EPITAPHIGRAM: You can read my ramblings and get a giggle or 27, or you can be a lame ass and just click on the post title above to read the entire article. Also, if your vision sucks like mine or you're a lazy m.f. and you just want to look at the interactive graphic timeline, which, like THIS BLOG POST, you can share the love on Facebook, Twitter, and many of your social networking sites. But be warned, if you take this route, I'll hunt you down and find a way to make all those stupid people that think neurological disorders are contagious correct. So, carry on. And enjoy!
"research into ancient Chinese fungus that propagates inside insects yields potential relief for multiple sclerosis."
GIVE ME MY BUG GUTS! Many of us may already be gimps (aka raspberry ripples - love this newly "learnt" British Slang - so tasty!) , we may be comprised of plasma and proteins of 10s of 1000s of strangers, and soon, we may be bug guts too.
As a professional TM/MS/RSD-er, I be well-school [sic(k)] in the cross- over of side effects, disabilities, and treatments.
For example, the IVIg that I've been receiving regularly (up to to 5 days every other week) to treat, originally, my Transverse Myelitis (TM), also is used to treat many Multiple Sclerosis (MS) patients, AND NOW has been found to provide relief to Chronic Regional Pain (CRPS aka RSD) patients. Even though IVIg's become holy grail of fixed trifectas, many insurance companies, including the profanely corrupt AETNA and some Blue Cross/Blue Shield's (to name just two super-sized crooked crook companies), REFUSE to PROVIDE COVERAGE for this pertinent treatment, even when there are no other options.
I've witnessed it too - all of it.
After receiving IVIg for the first time, a dear friend with Stage 4 RSD who has gone through 2 Ketamine Comas(I receive an Americanized watered-down autocratic FDA-version of this treatment) in Germany only to receive short-term remissions, gained an 80% relief in pain, and in RSD percentages that's like erasing 10 natural child-births from your body at once. And of course, her BC/BS refuses to cover home infusion of IVIg, so she must travel 2 hours to receive it in-patient - totally unnecessary and totally fiscally irresponsible and wasteful.
Surprise, surprise. If all entrepreneurs thought like insurance companies, we'd live in an ugly, ugly world my friends.
OK, back to the bug.
NATURAL HEALING The article validates much of what Chinese medicine and Complimentary Alternative Medicine (CAM) has to offer:
For centuries Chinese medicine has seen restorative properties in an Asian fungus that invades and destroys insects. Now a drug drawing on that age-old lore is poised to become an important new treatment for multiple sclerosis.
A Food and Drug Administration panel unanimously recommended this month that the drug called fingolimod be approved as the first oral medicine for MS, an often-debilitating disease in which the body's own immune system attacks a fatty substance protecting nerve fibers. The drug, assuming it gets final FDA approval, would significantly expand the treatment options for the hundreds of thousands of Americans with MS.
Nature was the first source of medicines to treat human disease and remains an important one. The Japanese scientists who discovered fingolimod added their names to a list that goes back to the European chemists who derived aspirin from a substance in willow bark and Alexander Fleming, who found that a fungus produced a bacteria-killing substance called penicillin.
TIME TRAVEL We'll probably have to go to Canada or Mexico to get access to this crunchy, winged medical miracle in our lifetime (OK, I may be exaggerating a big...how 'bout in the next decade), but it may be worth the trip. And boy, do I need a vacation. Mexico would be perfect if heat weren't so debilitating for us MS/TMers. Quebec would be gorgeous too, but not in the winter for us RSD-ers. So plan your trips accordingly, my friends.
Or maybe we could just accidentally find it dipped in chocolate and wrapped in plastic wrap on a styrofoam plate at our local Asian grocery???
Either way, let's get buggy...
(of course, I'd have to try to find an appropriate personifying video...this one's a stretch, but it was this or something that would be rascist coming from a white, jew, atheist, socialist/capitalist, rasperberry ripple. PS they use the F-word once and with perfect timing and pitch.)
Please Note: Some photos may contain partial nudity or depictions of medical procedures. Though I am in many of these photos, my reason for sharing these personal photos is to promote awareness, understanding, and advocacy for people with TM and other rare diseases.
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."
