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).

Melanie Quoted in Assoc. Press (AP) Article on Healthcare!

The following article, includes a paragraph and quote about and by me on the necessity of the current controversy over the COBRA subsidy. Written by an AP writer on healthcare, based out of DC, this article has been published internationally in newspapers from San Francisco's SF Chronical to the Chicago Sun Times, The Washington Post, the UK Guardian, as well as online news sources such as CBS, ABC, and Yahoo News among hundreds of other newspapers and sources.

Obama faces rare defeat on health help for jobless

By RICARDO ALONSO-ZALDIVAR, Associated Press Writer Ricardo Alonso-zaldivar, Associated Press Writer – Sat Jun 12, 11:19 am ET

WASHINGTON – If Chuck Lacasse had gotten his pink slip four days earlier, Uncle Sam would have covered most of his family's health insurance while he looked for a new job.

But Congress allowed emergency health care assistance for unemployed workers to expire May 31, and seems unwilling to renew it despite pleas from President Barack Obama.

Not three months after lawmakers passed his $1 trillion insurance overhaul, Obama is facing a rare defeat on health care at the hands of his own divided Democrats. Moderates have rebelled against adding billions more to the deficit in a treacherous election year.

"The same Congress that spent all this political capital trying to get people health insurance is going to take a crucial benefit away from unemployed people," said Andrew Stettner, deputy director of the National Employment Law Project, which advocates for the unemployed.

On June 4, Lacasse lost his job as advertising director for a company that makes nutritional supplements. He'll soon have to pay the entire $1,500 monthly premium to keep his family covered under his former employer's health insurance plan.

Until May 31, under Obama's economic stimulus law, the government provided a 65 percent subsidy. That would have lowered his cost to $525.

"This really isn't about welfare," said Lacasse, 40. "It's about buying people some time. In a position as specialized as mine, it would have been nice to know that I had some time to look for the right job." He lives near Green Bay, Wis., with his wife and two children.

Democratic Sens. Bob Casey of Pennsylvania and Sherrod Brown of Ohio have introduced a measure that would allow the program to continue helping people who get laid off through Nov. 30. That would cover Lacasse.

The lawmakers, who are seeking a vote this coming week, want to attach their nearly $7 billion provision to must-pass legislation that would extend unemployment benefits and make changes in dozens of federal programs. But a similar proposal was dropped from the House-passed bill, and Senate Democratic leaders also omitted it from their version.

"I'm concerned about it," said Washington Sen. Patty Murray, a member of the Democratic leadership. "There will be people who fall through the cracks."

Under a 1980s law known as COBRA, laid-off workers generally can stay on their former employers health plan for up to 18 months, provided they pay the full premium plus a small administrative charge. But with family premiums averaging about $13,500, the cost is prohibitive for most people.

That changed under the 2009 stimulus bill and subsequent expansions, which provided a 65 percent federal subsidy for up to 15 months. Workers laid off through May 31 can qualify for the benefit through their former employer.

"It has been a significant program and it has helped many middle-class families to keep their health insurance at a time when maintaining health insurance was difficult because of the high rate of job loss," said Alan Krueger, the Treasury Department's chief economist. Official statistics on how many people were helped have yet to be compiled, but Krueger estimates that as many as one-third of eligible unemployed workers enrolled in subsidized coverage.

Melanie Miller, 34, who suffers from debilitating neurological problems, said the COBRA program allowed her to maintain her independence after losing her ad agency job. "Without the subsidy, I probably would have had to move back and live in my mother's house in the basement," said Miller, an artist who lives in Philadelphia.

With the unemployment rate hovering just under 10 percent and with 15 million people looking for work, advocates say it's premature to withdraw assistance.

"We're recovering, but we haven't recovered fully," said Casey. "Now is not the time to pull up the ladder on people who are hanging on, in some cases to the last rung."

Some conservative Democrats, however, say they don't understand why the government should subsidize workers who lose jobs with employer coverage and not others who are equally deserving — for example self-employed people priced out of the private market.

"You're paying 65 percent of (one) family's health care costs, but the neighbor next door, there's no help for," said Rep. Dennis Cardoza, D-Calif. "So we're picking and choosing. There's an inequality there between our constituents." Not to mention that Congress has treated the program as emergency spending, adding its cost to the deficit.

In Marietta, Ohio, boiler operator Neil Davis is facing the loss of his job as the coal-burning power plant he works at prepares to shut down for good. Davis, 33, has marketable skills but he's unsure how quickly he'll be able to find comparable work. His wife is a stay-at-home mom raising two elementary-age children.

"Being able to have coverage at an affordable rate, we wouldn't be afraid to take the kids to the doctor if they get sick," said Davis. "The economy might be getting better some place, but I don't know where at."

___

Associated Press writer Andrew Taylor contributed to this report.

###

PS Don't forget to come see me tomorrow (Sunday) at Art for the Cash Poor, Booth 54 (see above nav bar for picture link).

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.