What Helped You Most After Your _______ Diagnosis?

I just skimmed a one-sided, but thought-provoking article by this title, the fill in the blank being Multiple Sclerosis, but this is an important question for all of us chronic illness-ers to ponder.

Perhaps it brings us a moment of miniature joy, perhaps a wholesome cry, perhaps an epic realization of hallucinogenic shamanic ritual proportions that makes it all make sense.

Regardless, the amount of comments on this article are filling quickly - I'm comment #34 and will paste it below - and I'd love to read, correction: we NEED to hear from those of you that choose to  add your perspective in the comments section on author Julie Stachowiak, Ph.D.'s About.com page for above mentioned article, or just here among friends.


While the article and responses are like a straight line that needs some curves and hills, we - especially the stoic soloists in disease management - need to speak out. And we need not drop our heads in abandon (unless you're too tired to hold up your head) because we are alone.

I've always preferred collaboration, but I also craved the opportunity to be given the award of a solo for my extra sweat and infinite effort. It meant I arrived, graduated to another level; I was good enough; worthy.

I got used to working my ass off - literally - from a young age. As a dancer, if you want to make it, that's what you have to do. As a sicko, at a young age, or golden year, to be a true survivor - someone worthy of an encore, a cacophony of "bravo"s from the balcony, bouquets of flowers thrown at your feet from strangers and admirers - you have to be tough as shit wittling it's way from the cage of a stomach with gastroparesis.

Sick, I know.

But isn't that the point?! And isn't it the truth?

While, I've lost my need for stage presence, (and ability...) for perfect quadruple pirouettes or catapulting my body over another, I'm an olympian when it comes to navigating the triple sow cows (made up ice skating move) of my sicko-ensemble. I'm used to scraps and people's leftovers; to being the banged up tupperware that gets thrown in the freezer before it rots for good, or just tossed -tupperware and green fuzz - in the trash.

Do I see myself as someone else's trash?!

Yes and no. We've all been there. Trashed, pushed aside, forgotten, discarded, dumped, dejected, disowned by the people we love or like or like a little, just because we have something or things that are out of our control per their onset, but mostly in our control how we carry ourselves through the journey. Often times it doesn't matter which way we stumble - with grace or grumpiness; we're still left with our diagnosis (ses) as our only friend(s). Obviously, we need to broaden our social circle and not our disease panel, though sometimes the latter's inevitable, or both may go hand in hand... you never know.

SO WHAT HELPS?
Long rambling, short, I'm sick of being sick to other people and my appointment book. But I'm not gonna bitch about it beyond that. I have a therapist for that. (Highly recommended.)

As promised, here's my #34 comment. I hope you become a number on this page too - even if you're another hubby-is-my-savior-&/or-deserter-answer-er. We've all been screwed by the medical system, but here's our chance to turn that screw into a positive screw, and I could really use a positive screw... or two, or three, or.... That would really, really, really help, and it's doctor's orders.


MY RESPONSE COMMENT
Here's my sunny side of one of my neuro disorders response to Dr. Stachowski's article.

(34) NeuroDetour says:

My story is a little different. In 2008 I was partially paralyzed by a rare demyelinating disorder called Transverse Myelitis(TM), which is sort of like the opposite of MS, and has a 2-year recovery period. What you are left with in the end is what you have and 30% of us remain wheelchair- or bed-bound and on feeding tubes. Because of its rarity, my insurance denied coverage to the limited and integral treatment I needed, calling it “experimental”. When there are only 30,000 people in the US with a disorder, of course everything is experimental.

During our legal battle, I lost most of my functionality and I went 99% blind. Nine months after my initial TM diagnosis, my doc called with an apologetic tone; my MRIs and LP proved MS, which was caused by the TM.

Although my first disorder with an “ending” (but it turns out I’m in the 3% that has recurring TM) turned into a lifetime without prognosis, in many ways this diagnosis has been a relief.

The treatments for MS, such as IVIg & Plasmapharesis, overlap with the limited treatments for Transverse Myelitis. With my MS diagnosis, I never again (for the most part) had to fight the drug companies – for major or minor treatments, surgeries, meds. When in doubt, having MS has made my struggles with my other neurological disorders simplified. I have a total of 3; 2 of which are rare, therefore getting treatment approval is a secondary battle to battling the disorders themselves.

And living with chronic illness, any access to a simplified life is a good life… a better life.

IVIg Activism: An AWESOME IVIg Campagin Video & YOUR TURN to Speak Out

Michelle Vogel

This just in from Michelle Vogel of the he Alliance for Plasma Therapies:

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.

 

 

Ketamine Cam Day 2: with spills and special guests

Mois...coming down from ketamine...again.






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.

ALERT! Calling all Humans...who care about their health and others

Hello my sicko and non-sicko friends!

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!

Best,

Jessica Larochelle
Field Director
Families USA

--------
Families USA | 1201 New York Ave., NW, Suite 1100, Washington, DC 20005
www.familiesusa.org | info@familiesusa.org

LET'S SHARE

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.

Let's Play! Scatterneuries!!

CATEGORY: RSD (CRPS) & BOOBS

TYPE: Multiple Choice

DEADLINE: July 15, 2010.

JUDGE: My Doc

Learn the rules and reasons for "Let's Play! Scatterneuries!!"

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:

1. Will Melanie have to wait a whole month for the other boob to deflate?
2. Will boob A catch back up to boob B in RSD swelling first?
3. 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.

Answer Now!

Answer 1 $1.00 Answer 2 $1.00 Answer 3 $1.00

Your Money, Your Choice

Keep No Matter What Return if I Lose Return if I Win

Let's Play! Scatterneuries!! - A Playful Site Update

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).

What We Were...a psychogenic illumination and Q w/o A

PREAMBLE...you may've heard it before, but hear it again.
About 1 month past my 33rd birthday - when I had danced in my fave platform sandals that highlighted my modeled calves and thighs, partied among a collection of mismatched and matriculated friends, drank wine, ate with a full appetite both for food and life, drank more wine, and snuck hand-holding with man of the month (not my month, but his) - I found myself lodged in an unexpected world, a trip and tripping...2 Septembers ago, 4 weeks past a month of unfathomable, unnameable outer-body, outer-mind, outer-control-of-my-own physical and mental experiences - from street-spinning vertigo, buckling knees, emergency room visits, public incontinence, and finally partial paralysis and full-body pain and sensitivity making walking nearly impossible - I had the luck, yes I said luck, of receiving a swift and accurate, yet unexpected and unheard of diagnosis - Transverse Myelitis (TM).

Immediately hospitalized for more than a week on 1000mg of IV steroids and myriad tests, my doctor was hopeful, or at least he used his doctorly knowledge of the benefit of hope to tell me, I'd be back to normal in a couple of weeks - back to dancing, boyfriends - as many as I wanted, and my job - those things we call freedom.

In those two weeks, my condition worsened and with ongoing steroids stealing my sleep, I had the time and (still) the mental capacity to research this strange and rare condition. Within less than 2 weeks, I was back in the hospital; this time for two weeks receiving two treatments to cleanse my body of the angry antibodies that were attacking my nervous system and spinal chord.


LIBERACE WAS MY CO-PILOT
I had lived a life of luxury - not financial, but emotional, experimental, risk-taking, following my humble choreographer's vision to change the world, or at least, a few square miles of it with the communicative and evocative power that only the body in architected motion and meaning, and the mind dedicated and directed in devoted poetic outreach and activism.

Why was my body, that for nearly a lifetime I had sculpted, strengthened, and serviced like a mustang and its overzealous owner, so angry at me?


BACK TO SICK BAY...sea sickness and docking
The second round of in-patient treatments - plasmapharesis followed by IVIg - helped, but didn't fulfill my doctor's promise. He changed his prognosis to a long, arduous 2-year recovery period, yielding an undefinable prognosis.

However, Dr. S promised he would do everything he could to bring me into the realm of the top 30 percentile of TM recoveries, returning me to my previously full-body control state - bladder and all - or at least as close to it as possible. The 2nd third promised minimal or no change, and the bottom third, a bedridden lifetime or ceaseless paralysis.

Since the first symptoms appeared about a week past my birthday, I figured by 34 or 35, my struggle would be over; the prognosis finalized, I'd pick up the pieces, work with what I had, and get back to a normal life - fleeced of uncomfortable and time-consuming treatments and a body in revolt.


AND BACK ON THE GORGE(S)
That actuality almost ended one day before my next birthday, when the second diagnosis of Multiple Sclerosis (MS) was confirmed and delivered. Although closely related to TM, 97% of people with TM, especially those that fall in the 1st 30 percentile continue throughout the "recovery period" to experience recovery, while MS, for most is forever degenerative.

Even though I didn't yet fit in that tantalizing 30% TM category with new symtpoms popping like movie corn, and old symptoms ebbing and flowing, my doctor and I still had hope, and he still promised things will get better - at least on the TM side.

But now there was not only TM and its accompanied autoimmune encephalitis that clouded my cognition and former intellectual musings and doings, but there was MS. One with an up-view, one with a down-view, and possibly both just waffling along on a fixed tightrope. So the MS treatment started and six months later my lesions held there ground, which is something I consider lucky. My MS was standing ground, not degenerating.

This all came following many return hospital stays - my body and mind not only in revolt, in states of varying dementia, but pain greater than being run over by a car - and I had the right to make that comparison. My cane, a walker, a wheelchair - I knew these mobility assistance devices well; I was naked, if not useless, without them - naked in every sense of the word.


OKEY DOKEY
I came to terms with the TM and its recovery period. I accepted the MS. I did my mourning in due order. I had let these disruptions become a part of me, as well as the deformations of mind and body - whether or not friends, lovers, or strangers concurred.

***

When I returned to the hospital, by then my second home, in February 2010 due to a public relapse that rendered me attached to a lovely but highly-priced couch in West Elm, waving off the sales people who thought I was there as a customer and not a patient with the inability to exhale, speak, or swallow, profound internal and external pain and weakness, and a well-timed stay for my necessary fistula operation (another physical deformity that I hadn't been fully briefed on, also used for dialysis), I was ready for the same old same old.

Not this time.


THEY SAY 3(and a 1/2 and then some) IS A CHARM
RSD. Another diagnosis. Another incurable and barely understood neurological disorder. A painful, ugly, unimaginable pulverization of my peace.

And not only RSD, osteoporosis and chronic anemia as well.

J., one of my regular nurses said, I thought you were going to get that [RSD] diagnosis. When I asked how she knew, she replied that my previous stays and their accompanied tear- and (not my quiet, stoic high-pain-tolerance-way) shriek-inducing bodily-induced-torture that tipped the scale to a hell I didn't believe in, had all the markers.

***

Most of you know all of this already.

Most of you may not know, now, when I asked that pervaisve question, what do you do?, I answer plainly and truthfully, I'm a full-time patient.


THE WAY WE WERE

I'm returning to the history of my neurological detour to make a point that found its voice in a delicate woman - my IV Ketmaine booster neighbor of the week. (I'll post the Ketamine cam vids later, at a more appropriate time)

When it was just TM; when it was just TM and encephalitis; when it was just TM, encephalitis, and MS, I still introduced myself as a freelance writer and an artist. Even though I was on long-term disability and SSDI, and that glorious work that once defined me, that gave me purpose, something, anything to look forward to was becoming more and more of a mirage, I knew I had a future - something to go to, someplace to arrive, some kind of existence in which I could be and do and contribute to this thing called society, a community that I still belonged to in some way.

But know it's more than a neuro detour, it's neuro soup, and the basic ingredients are identified (thus far), but the subtle spices that give it its flavor are a mystery. A mystery that is even more spicy than the life I can live now.

This neuro detour-soup is a life of what was, the way we were. In the infusion suite where we are a community, and in that other real world filled with fully-abled, employed and under-employed citizens, we introduce ourselves as what we were:

I was a dancer.
I was a mother.
I was a doctor.
I worked construction.
I was a student.
I was, I was, I was...

We talk in terms of what we were, not who we are. And rarely, if ever of what we could be.

We have so many stories of disappointment, loss, pain, mistrust.

Like my compatriot in the reclining chair next to me awaiting our treatment - our hope for some release from the consuming pain, swelling, burning, and sweating of RSD - her family doesn't trust her with her grandchildren - mine with my beloved nieces.

She tells me this. We both cry as silently as possible.

Even in the people's eyes who know us best, who you'd think know our capacity, we are not trusted. We are as unreliable as an addict, but the only addiction we might be guilty of is hoping for a cure, an end, someone, some people who will accept and love us for who and what we are, those special souls who will stay and stay true to who they are and who we are.

It is hard to have hope with these conditions.

It is hard to have hope when insurance companies deny coverage for the only treatments that may bring us some relief, hopefully even remission.

It is hard to have hope when friends, family and lovers give us all the love and support the globe can sustain and when the flare-ups takeover our ease, our freedom, they take their freedom and run - fearful that we'll swallow theirs too.

Yes, hope is imperative. Goals, careers and futures give lives meaning.

So tell me, where do we, the incurable neuro-ites, the stoic pain-stewards, the logically hopeless keep that precious medicine in our personal sphere of self-protection and healing?

In this neuro-life, it is the experience of many of us that the people we love and admire stop trusting us, stop feeling comfortable around us, stop wanting us - in our less than perfect state - in their lives as we are, or as we could be? (Sidebar: If I find the purpose and/or strength and/or utter openness, I will offer physical proof in a future post.)

How do we keep hoping? How do we continue to trust? Can you tell me this - honestly?

I want to know. Trust me.

Our Day Came and Went..in Australia?!

I'm embarrassed to admit, but I rarely look at the News Listings on my own blog, but psychic energy drew my eye there today. And what did I learn, Australia has a national Transverse Myelitis Day!

Unfortunately, many of the few of us missed the opportunity to join in this year, as the little known day, May 17, has passed.We could make our own, but why not join forces? Why not initiate an international TM Awareness Day?

We could do it grassroots, but I'd like to make it official. Don't you? So.....


HEEELLLLLLLLP!

1. ***Does anyone out there know how to make TM Day an international reality?
2. ***What organization(s) are responsible for actualizing this & what is the procedure?

Don't know yourself? Don't leave us TMers hanging without our own holiday....

Tweet it. FB it. Ask your family doc. Ask your local politicians. Ask God, Jesus, Buddha, your hairdresser, manicurist, or neighborhood psychic.

And while we're at it...let's work to unite all neuro-ites with an International Neurological Disorder Day (bolded in place of a much-deserved hyperlink) too.



EXCUSES, EXCUSES
You may be asking, Why don't you, Melanie, do it yourself? The answer - I'm impatient, I want an answer/resolution asap, starting tomorrow I have a week of double treatment (IVIg & Ketamine Infusion boosters), I'm entering another RSD flare-up, I'm exhausted and cognitively impaired, and I can't do everything. I can barely do the requirements of a full-time sicko, let alone manage my life and the lives of every TMer across the globe.

When I started my professional dance career, the first choreographer I worked with often said, It's my job to make it up. It's your job to remember it [do it]. So everybody, let's listen to Patty, and immortalize her contribution to the dance world...and my world.

Chop, chop! I'm looking forward to a lot of comment responses to this one.

Miss me? Come See me this Saturday...at the TA Arts Fest!

Click on the title link above to be taken on a swift journey to one of my many blogs...where I decided to post all the juicy details.

Ta ta,
Melanie

Yesterday I Walked. Today I Tripped. Tomorrow...

...I'll be tripping my swollen body off again from the experimental ketamine infusion treatment that I began today to combat neuro disorder #4: RSD/CRPS. The good news, I'm in the hands of the world's most competent ketamine infu-sycian - my neurologist, Dr. Schwartzman.

If only I could record my thoughts and visions during any 1 of the 10 4-hour treatment sessions - I'd be the most prolific gimp writer this world has ever known, but, alas the ketamine/versad infusion doesn't welcome the use of the body in time with the mind.

Anecdotally, what made my treatment super trippy was the music: circa 1980/90's from Erasure to The Cure to Smashing Pumpkins and some hard rock band that begins with T that I can't remember. Envision underground/alternative meets strip joint/under-aged dance club for girls wearing black and white striped thigh highs (yes they were in style 20 years ago too) and boys wearing black nail polish and combat boots (another fashion that has made its debut more than once). I won't get into any more detail on this coinkydink - but it made the treatment all the more nostalgic errrrrr ummmmm.


AND THEN THERE WAS THE WALK
Yep. We did it. Walking and wheel-chairing (I think I made about 1.3 miles of the 4 upright).

And we're still doing it. We're still raising money for MS, believe it or not. Donations are still coming in, and if someone were to graciously donate $140 to me personally, I would become the #5 top individual fundraisers.

Thanks to teammate and former classmate and roommate Kathy - straight from the ocean waves of Wilmingon, NC - our team brisked the 4 mile runway in original Mel's Neuro Detour F**K MS, TM, and RSD matching tees. (And you can too, we have some extras).

Our small but valiant team, including members from Brooklyn (Rob, pictured behind me) to New Mexico (Ty) in the flesh!!! - friends of 20 years or more, mixed in with new friends from my new Philly home who will hopefully continue to be with us for what is our new annual meeting grounds regardless of zip code.

My post-trippy point, is that we rocked the MS Walk 2010 with grace, poise, comaraderie, hope, and more money than I ever was able to raise from a Junction Dance Theatre fundraiser!


TOMORROW, as in, NEXT YEAR TOMORROW
We've committed to reconvening next year, and to increase our cast and crew, so mark your calendars now, so we can move from Top Team #9 to 5 (trust me, we'll never beat #1 - they have us by 140 helpful teenagers).


TOMORROW, as in, TOMORROW TOMORROW
This sloppy, occasionally slapstick post is probably all you can expect from trippy old-bones mel for the next couple of weeks. Tho, if I had the energy following treatments it would do my writer's pen justice to record my visions.

I'm already feeling some relief in pain, and fat face is depleting, yay yay yay. Let's hope this continues, because not all RSDSers respond to this treatment (which, Aetna, my insurance will not cover BTW...surprise, surprise).

So...my visions and I will see you in a few weeks, and if we meet again sooner, won't that be nice.

Join My Team Dammit! And/OR Support (i.e., $$$) A Cure...so I can stop bombarding you!!!

To my dearest Neuro Detour family,

I recently decided to participate in the Walk MS Event - even tho I'm having my worst RSD falre up ever - and I'm inviting you to join my team, Mel's Neuro Detour.

WHY I WALK...

I have MS. I have cousins with MS. I have friends with MS. I am part of a much larger community of people with MS and their care takers or support systems.

I don't even know...

• if I'll have the strength to walk on May 2
• if pain will require me to be in a wheel chair to complete the walk on May 2
• if I will not be hosiptalized on May 2 for a relapse, flare up, or other complication

I believe in the forthcoming cure. And I want it to happen in my lifetime. Living with MS and other neurological disorders f***ing sucks.

There. I said it as plain and true as can be.

MS is one of several neuro disorders that have stolen my identity, my independence, my dance, my mind, my life as I knew it and invisioned it.

But, I'm going to walk or roll on May 2, even though I can't predict what condition my body will be in that day. Why? Because, as my brother gave me this mantra, "my life sucks, but I rock," and I'd like to erase that first phrase from my mantra.

I hate asking for help, but I'm asking you now. PLEASE HELP give me and every other MS patient their life back by joining or donating to my team today. Help me have hope.

BY CANE OR BY WHEELCHAIR, LET'S WALK AND ROLL...

I'll be at the Philadelphia Art Museum on Sunday, May 2. And I want you to be there with me, either in person or in spirit (but the only way your spirit is allowed entrance is if you donate goshdarnit).

JOIN MY TEAM DAMMIT!

By joining my team, you'll be signing up not just for a day of fun (sounds corny doesn't it? That's because this is MS Society copy :) ), but also for a celebration of the great things we can achieve when working together for a common cause, a cause that unfortunately affects me directly. Each step we take brings us one step closer to a cure - and closer to a world free of MS, one of several neurological disorders that have completely altered my life.

And if we get an MS cure, we'll likely have a Transverse Myelitis(TM) cure too - except the FDA will hold back on that life-wroth-living-giving gift for years probably, while insurance companies reject TM-Only-Neuro-Diseases because it's "experimental", and the medical company that gets the patent first makes millions off of desperate TMers who are willing to pay our of their pocket for a cure they deserve and earned.



TWO CHOICES: JOIN OR GIVE OR BOTH (I guess that's 3)

Please join my team today or make a donation on my behalf.

To get things started, I've donated $75.32: 75 for the year I was born, and 32 for the age I was when my neuro detour began. That's a lot of money for me, as I'm on a fixed income, but it demonstrates how meaningful this cause is to me.

(why) YOU SHOULD SPONSOR ME

Because...

• I walk with a cane.
• I've had to use a wheelchair and a walker.
• I want to be cane-free, pain-free, hospital-free, AND it would be nice to have people stare at my face instead of my boobs...I mean cane (but really I think 1/2 of the 21lbs of RSD swelling went to the boobage arena).
• I want to stop sleeping my life away.
• I don't ever want to be a burden to my friends, family, or society.
• I feel like a burden.
• I hate asking for help.
• I'm often too weak to open the doors to my apartment building, or too spastic to perform daily activities like dressing myself.
  
• I'm an awesome fundraiser, and we're almost in the Top 10 fundraising teams.
  

Because...

• I'm judged by strangers when I speak funny, or my body spontaneously spasms, or my hands shake uncontrollably, or I can't find the word I need to complete my thought, because I lose my thoughts mid-thought, because they see a burden and not an independent woman, because I deserve a better life than the one I have.

AND, because I'm awesome! :)

But I could be so much more awesome if the MS Society and MS researchers have the funds to find the cure, or at least make our lives a little less painful, a little more enjoyable.

The National Multiple Sclerosis Society will use funds collected from Walk MS to not only support research for a cure tomorrow, but also to provide programs which address the needs of people like me living with MS today.

Because we choose to walk for those who sometimes can't, because we choose to donate to the MS Walk, we are getting closer to the hour when no one will have to hear the words, "You have MS...[insert phrase ending:]

a) you're not marriage material, I'll just stand [insert name] up"

b) oooh, is she contagious?"

c) is that girl/boy with the cane drunk?"

d) how could our mother leave my daughter with you...in harm's way?"

With extreme gratitude and a bit of hope, AND slight embarassment for the bits of copy included in this post that were written by some cheesy senior copywriter from some ladidah ad agency for the National MS Society,

Melanie Miller, AKA Neuro Soup Glamour Gimp

PS If you would like more information about the National Multiple Sclerosis Society, how proceeds from Walk MS are used, or the other ways you can get involved in the fight against MS, please visit nationalmssociety.org

PPS As of last week I raised more than double my original goal, so I tripled it. AND, we surpassed our team goal of $2008 (the year of my neuro detour entry), so I raised that goal too. So don't leave me hangin' and make me look a fool[sic re: phrasing].



PPPS If you need to be guilted into joining, supporting, making a difference watch the following:

Quick, painful, artful, philanthropical, update..

It's been a while...again. And I'm more than under the weather, so I'm going to make this update as efficient and succinct as this verbose neuro girl can muster.

1. I'm in the midst of a full-body RSD aka CRPS flare-up
2. I have gained 21 pounds of pure swelling and cannot use my left hand or be touched anywhere from the waist up.
3. I have several extra faces for sale, but they are very expensive.
   
4. Aetna denied my doctor's orders for a 5-6-day hospital stay.
5. I'll be starting a trippy, 10-day regimen of out-patient IV Ketamine once all the psych and cardiology clearances come through
6. I was hospitalized for 9 days in February for an MS exacerbation
7. I had a surgery to implant a fistula (see video in 2.11.10 post) that, once matured, will replace the death trap permacath attached to my sternum and last working jugular vein
8. I've started a new art series for Mother's Day gifts
9. I am doing the MS Walk on May 2 at the Art Museum in Philly....hopefully by cane or by wheels to the finish line
10. Our team, Mel's Neuro Detour, is accepting new team members to walk with us, so JOIN NOW!!!!!
    
11. We are also graciously accepting donations to the team or to individual team members (like me)
12. I have already raised double my goal...which means I will be tripling it, and our team has reached our original goal of $2008 (the year I became a neuro-sicko), so I'll be raising that number too. We only have 11 days left, so keep the funds a-comin'
13. If you plan to join the team, we are each purchasing our own $20 Mel's Neuro Detour/F**K neuro disorder T-shirt, artfully designed by team member Kathryn Babson, who is making the long journey from Wilmington, North Carolina for the walk. If you haven't sent your T-shirt size to Kathy, please do it today before it's too late.
    

Neuro Detour: on paper: Renegade Rent Due/Mother's Day Sale...Tomorrow!

Click on the link above to get the details. And don't forget to check out the Where to Find Me column on the right side...lots of updates. Yippee.

It's your turn to indulge in some retail therapy.

I'm in a Group Show!....Opening art party tonight. Come!

Click on the title to go to the post...it's worth the exercise.

Todays Our Day...It's Celebrate Rare Disease Day!

I'm not adding my two (or 50 for those who know my verbosity) cents to the linked title above. My severely preggers cousin (love ya Mandy) posted it on my FB page today, which without her I wouldn't have known that today is MY holiday!

...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.

Enjoy,
Melanie

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.

Philly Healthcare Rally: TOMORROW!!!

This is from Health Care for America Now!

Do you? You can sign up for their mailing list on their Website to receive your own updates for your city.

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

Click Here to RSVP

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. 6^th Street, Philadelphia

Wednesday, February 17, 12:00 Noon

Help Send off the Marchers! You can even walk part of the way with us.

Click Here to RSVP

Also check out www.melaniesmarch.com