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.
[I've been verbally absent, and at times physically and cognitively... but I'm planning my recovery to include a grand return to my regular posts here on Neuro Detour. For our first time together again, I couldn't help but share this chance to get out of our bodies, bothers, and into gratitude. See, it's not a cop out for composing original material. I stumbled across this today, and thought it was fabulous. And I share Fabulous [sic]. The following is written and posted by WEGO Health.]
Advocating for Another Award – Awarded to someone who raises awareness, speaks out, and advocates for the health condition of someone they love.
Best Ensemble Cast (Non-profit, advocacy group, health organization) – Awarded to a group who radvocates with tireless dedication and wide-reaching impact.
Best in Show: Blog - Awarded to someone who exemplifies the use of blogging to raise awareness and make connections.
Best in Show: Community/Forum - Awarded to someone who exemplifies the use of a community or forum to raise awareness and make connections.
Best in Show: Facebook - Awarded to someone who exemplifies the use of Facebook to raise awareness and make connections.
Best in Show: Twitter - Awarded to someone who exemplifies the use of Twitter to raise awareness and make connections.
Best in Show: Video – Awarded to someone who exemplifies the use of video to raise awareness and make connections.
Best Kept Secret – Awarded to someone in the online health community who is doing great work but hasn't gotten a lot of attention.
Health Activist Hero – Awarded to an inspiring, supportive, and knowledgeable Health Activist who has truly changed people’s lives.
Hilarious Health Activist Award - Awarded to the Health Activist who makes you laugh alongside their advocacy. Nominate your favorite comedian.
Ms/Mr. Congeniality – Awarded to someone who always has a kind word, a positive note, and a virtual hug.
Paperboy Award – Awarded to the Health Activist who always delivers the latest and greatest health news and research.
Rookie of the Year – Awarded to a Health Activist who came on the scene in 2012 but has inspired the entire community.
Silver Stethoscope – Awarded to a healthcare professional who utilizes social media, online community, and technology to make the world a better place.
Trailblazer Award – Awarded to the Health Activist who is ahead of every curve, excited by new technology, and encourages everyone to join them.
Unsung Hero Award – Awarded to the member of your community who is always helping, advising, and sharing – but may not know how amazing and valuable they are.
Want to get involved in the 2012 WEGO Health Activist Awards but not sure who to nominate? Sign up on the awards page, and we'll make sure to keep you in the loop!
2 Gimps With 1 Stone - a horrible thing to say, but i'm spent and rushed and neither of those are good for 1 gimp, let alone 2 with or without a stone. Tweet me anyway, please?
That's me as Old Mel in Bodiverse. And the Gallery Logo... how'd that get there?
[insert mel]
And I'm reviving my NeuroDemon-Abandoned "ongoing" project Bodiverse. Reincarnated as a 35-minute non-video-art-video-art work. The short description is: the body; the verse; the universe. The long one's all over the pages of the Bodiverse blog. Just google it, and save me the time of links and all that jazz.
After all... I've been IVIg-less since Medicare kicked in May 1. So I can't even see what I'm typing.
Keep on, keepin' on.... for details about this awesome group exhibit. [Hint: There's a surprise for you at the end.... not a box of chocolate, but almost as expensive!]
[insert gallery]
Oliver wanted the artists to have free reign when developing work for “Femme” – an expression both foreign and innate - that conjures thoughts, emotions, images, experiences, and memories as inclusive as they can be exclusive; as intimate and commonplace as they can be political and controversial; timely, post-contemporary, and historical; ideals and ordeals of gender, femininity, or feminism.
The variety of mixed-gender artists tackled this broad subject as variously as the artists themselves, resulting in a thought-provoking, intimate ,and universal mixed media exhibition of “Femme” expressed through painting, photography, sculpture, glass, multimedia video, performance, and installation art – as well as the possibility for the on-looker to become art in the show. “Not be be missed,” says James Oliver, gallery owner.
Featuring Artists
Pete Checchia • Karen Gibson • Anthony DeMelas • Nick Cassway • Ernie Sandidge
Melanie Miller • Jesse Beamesderfer • Rick Fichter • Gretchen Diehl
Antonia Cianfrani Brady Sanders • Zito • Benjamin Sperry
Denise Fike• Erin Etcker • James Oliver • Tom Buildmore
[insert Mel: and don't forget]
Opening Reception
June 18th, 6PM-10PM
The exhibit will run through August 20th
II.
Seeking STRONG BODIES
to be in a GIMP THIS! Art Installation.
TOMORROW!
Also @ James Oliver Gallery's Femme Opening Reception
This is what's posted on Craig's List. Get out your reading glasses, press zoom, just be you're super human self, or click on the image and go right to the original post.
However you swing your cane, feel free to respond if you know a STRONG & WILLING body, I mean person:
could i take any more short cuts?!
Thanks all! Pass it on if you can!
Yours in Neuroism, Art, & Lights that are way too bright, Melanie
On February 10th, the Alliance for Plasma Therapies and the MS Society are introducing legislation in CA to stop the practice of tier IV plans/specialty tiers/coinsurance in private insurance plans in the State of California. We are going to be holding a press conference in San Francisco and ABC News wants to interview a patient who has been forced to pay coinsurance (instead of a flat copay per infusion a percentage of the cost of their IVIG). Please let me know if this has happened to you and if you are willing to share your story. You can email me [Michelle] at mvogel@plasmaalliance.org
While this initiative is currently for California, and this call for patients is specific to Northern California Patients, I hope we can get the Alliance, our local MS Society branches, and maybe even my friends at I.G. Living and Families USA to not only advocate politically on a regional level, but to continue this specific political and community awareness campaign throughout the US and beyond.
I must admit first, I've been out of the activist loop as I've been recovering from a triple exacerbation that landed me in a respectable Western PA hospital (that DID NOT KNOW WHAT! to do with me) while visiting family and hasn't given my portacath a break since. (This is my third week straight attached to an IV pole and the third treatment type of infusion therapy.) So I do not know if or what compatible campaigns are happening in Pennsylvania, or any other state (other than Cali) for that matter. Yes. I am an ignorant blogger. Tsssk, tsssk. Shame, shame.
Since when have I cared about the judgments of dissenters or righty tighties????, unless they are my mother or brother, of course.
But weak, delusional, flared, or on fire, I'll never stop bull-horning about Aetna's corruption and its life-threatening effects. This is an issue that affected me so profoundly adversely, thanks to Aetna (you can find many a post about them and my experience), that it's hard to know how much healthier I might be today if it weren't for their capitalist, self-serving policies.
As may have heard this from me, or read about this in a new book on the subject (neuro moment... title, eek), I had to lose my vision, after losing multiple appeals for IVIg coverage during most crucial 3 months of my recovery from Transverse Myelitis, despite the help of THE amazing pro-bono attorney, Jennifer Jaff, the brilliant visionary behind Alliance for Patients with Chronic Illness.
I should be grateful that I didn't have to repeat the battle with my current insurance company, however I too must pay coinsurance on my infusions - and even without TM or MS exacerbation or an RSD (aka CRPS) flare-up, I survive off the fruits of many many infusions and plasma therapies.
And this is something I still can't understand...
Why is being sick so expensive, often even more, sooooo much more money than the limited income SSDI and/or Long Term Disability provides us certified gimps to live? And even more offensive, SSDI makes us wait 2 years before receiving Medicare.
But that's another action to be redressed again, don't worry.
If you're not inspired yet by all of these impassioned people and non profits, you will be. Watch this video.
So, pretty amazing, right? Well, what are you willing to do about it?
Let's start with a conversation. In lieu of get well flowers, I'm humbly asking you to:
Help this to be the most active comment section of any Neuro Detour post to date.
Any ideas on how we can spread this campaign into our cities and states? The forum is yours, ours now. Let's share our ideas. Let's work collectively. Let's share our successes and failures. Whether you're a full-time sicko individual like me, or a part-time IV dabbler, your ideas and your voices are crucial. They are the first step.
Come on now. Edjumacate me. Please?
Let's (me) set a goal*: 10 comments with 10 comments on those comments.
Meet this goal, and maybe I'll even give you a prize!
*This may be subject to change at any time for any reason by the author, or the author's mind-controlling medications.
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.
Melanie is one swollen boob smaller thanks to my most recent IV ketamine boosters week. With my next set of boosters now 1 month away (for the first time), the question is:
Will Melanie have to wait a whole month for the other boob to deflate?
Will boob A catch back up to boob B in RSD swelling first?
Will Melanie just remain whopper-boobed (and is there a medical term for that)?
DIRECTIONS: Please select one choice from each drop down menu, then hit Buy Now! Make sure you include your contact information if you want recognition for winning and/or donating, or if you want your money back (winners only) or you just want me to know who you are.
As of today, I am invoking a new Neuro Game Show, Let's Play! Scatterneuries!!, right here on neuro detour, that you, yes YOU, can play whenever you want. Every 1-4 weeks a new Q&A, fill-in-the-cognitive-word-loss, or something of the sort will be posted, and for $1.00* (did you say only $1.00!), you can join the neuro fun.
A WIN-WIN GAME OF CORTEX CAPABILITY Winners: If you guess the winning answer, you get your $1 back (minus paypal fees) - if you want it.
Losers: If you lose, your $1 goes to a good neuro cause, such as research, current fundraisers, and/or my increasing medical bills.
META CONTEST: CALLING ALL GRAPHIC DESIGNERS Are you, or do you know, a budding or well-admired graphic designer? If so, neuro detour is looking for you! Design our next Let's Play! Scatterneuries!! logo, and see your design in every post of our ongoing new game series. And while you're at it, if, and only if, you feel like it, feel free to design a neuro detour logo too. (You will NOT be judged harshly if you submit just 1 logo.)
Although we won't pay you (because we can't - we are a 1-woman 3.5 neuro-disorder full-time patient on disability word-horse), karma will. We'll give you credit for it too, and you'll be admired by our 10,000+ readership, your friends, and neuro-ites world-wide. Or, if none of this fame and glory appeals to your generous jpeg spirit, at least you'll have some pro-bono work for your portolio, right?
Definitely worth it.
The Dealio... DEADLINE: July 21, 2010. ALL entries will be posted with your name, bio, and the reason why you wanted to create the new (and first) logo for Let's Play! Scatterneuries!! with a link to your Website and/or email. Ditto goes for neuro detour logos.
BACK TO...LET'S GET NEUROUTRAGEOUS! The Lesions, I Mean, Details Sometimes you'll have 1 week to get in your answer; sometimes 1 month...but no cheating, psychic interventions, or tom-peeping on the neuro subject in question allowed, or your $ will automatically go to my IVIg (or oxycotin, or klonipin, or ketamine, human albumin, etc., etc., etc.) habit.
Join the neuroutrageous game, Let's Play! Scatterneuries!!, today! (I'm pretty sure it's legal.) Our first installation will be a simple A,B,C Q&A will be (judged unknowlingly, therefore without bias by my very own doctor and...) posted later today.
Keep your good eye out.
*You will be given the opportunity to raise the stakes for the good of neuro-gimps in 19102 or world-wide if you choose to up your ante at your own philanthropical free will (something we neuro-ites don't usually have - "free will" not philanthropy, that is).
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."
