2 Gimps With 1 Stone: 1) Mel - Art Opening (tomorrow). 2) Seeking Strong Bodies - Dis-InEquality Live Art (tomorrow).

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?

Tweet

And now, I introduce to you.............  a 2 part email ............ this time actually with two parts!
 

I.

Mel's in an Art Show! TOMORROW!

The James Oliver Gallery Presents:

"Femme"

featuring 18 international artists

in a mixed media group exhibition exploring gender – in all its dimensions - the 21st century 

 
OPENING RECEPTION, June 18, 6-10PM

James Oliver Gallery
723 Chestnut St., 4th floor
Philadelphia, PA 19106
www.jamesolivergallery.com
jamesolivergallery@gmail.com
267-918-7432

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

 

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.

 

 

Where the hell have you been? And other awards.

My inborne Jewish guilt  has gotten the best of my slacker-ality (add it to the neuro-ictionary), and whala... here I am, with too much and too little to say.

So, here it is, in the best form ever invented - the list form:

1. WE WON AN AWARD!!!!!!! 
1. 
   
   
   
    
2. Thank you, thank you to all who nominated Neuro Detour. Wow, what a friggin' honor! Gee, it almost makes me feel lucky to be so effed up that I can write Neuro Detour and win top 35 gimpalicious blogs of 2010. Yippeeeeeee!
   
3. Now for the down and dirty....
1. it's been a shitty ride as of late, but (and there's always that stupid optimistic idealistic but) I've been lucky too to be in the right place with the right people to get the best out of this life that I can.
4. I did have a recent fall or 2, cracking a rib or 2, but mortal pain is nothing once you've had RSD pain, and I've had quite a bit of that.
5. Vertigo has taken me way yonder to using the original Vertikal Kris-O-fellow-
   TM-er-2nd-time-Hand-Me-Down-WALKER-from-Illinois. 
6. So, special thanks to Verikal Kris for keeping me vertikal [sic]... for the time being.
7. And dear Judy, thanks for being my partner in RSD and portacath crime. We all need a bosom buddy, or in our case, it's porta-buddy - same diff.
8. Being sick really fucking sucks.
9. Losing people you love because you're a sicko really fucking sucks.
10. Losing yourself because you are a sicko really fucking sucks.
11. Losing yourself because you are a sicko on really whacked out meds really fucking sucks.
    
    
    

    Image by christophe dune via Flickr

    Nice Logo... not quite, but close....

12. Some of the meds, like IV Ketamine, not only make you (me) better, but get you (me) trippin' and hallucinating grand realizations that disappear as quickly as the last 2 years have.
13. I am now a graduated TM-er, reaching my 2-year anniversary in August, 2 weeks after my 35th birthday.
14. My Neuro Detour should be over.
15. My Neuro Detour is just beginning.
16. I am no longer a TM-er.
17. I am a TM-MS-Stage 4-RSD-aka-CRPS-er-with lots of ancillary shit diseases like osteoporosis tied in.
18. I belong to no one, no group, nowhere.
19. I belong almost everywhere.
20. I hate that I am not free to go anywhere, even certain restaurants or stores or art galleries because they are not handicap accessible.
21. I hate sickness, and bigots, and nasty cabbies who charge you before you sit down because you take so long to get in the cab with your walker. 
22. I hate chic-chic and down-scale department stores and boutiques who may be accessible in architecture, but not in service. 
23. I hate insensitive people. 
24. I hate inequity.
25. I hate being a triple-quad minority.
Image via Wikipedia
26. I hate that society does not commit itself to the laws of the Americans with Disabilities Act (ADA).
27. I hate that my life is so expensive, but my income is so controlled.
28. I hate that I've ruined other peoples' lives, e.g., my mother, with my chronic illness and disability.
29. I hate bitching and moaning. Mine and others'.
    
30. I have started my first real physical rehabilitation, and I LOVE it. I'm only permitted to do aqua therapy at this point, but Aquatic Therapy of Chinatown is giving me something to look forward to 3x/week.
31. I wish I could walk through life in an 8 sq. ft. pool.
32. I am practicing transcendental meditation - by prescription
33. I am exploring the powers of one's mind.
34. I am starting an international movement (in my head and on a piece of foam core): 
1. Gimp This! (imagine the i in "this" as middle finger.), of dedicated equalists, anti-disability-haters and -prohibitors (silence is as much an act of hate as exclusion, ostracizing, blah, blah, you wronged me, blah.)
2. In other words, watch out out gimp-haters and ADA-non-compliance-ers, Gimp This will get you, out you, and picket you. Looking forward to ruining your business soon. :)
35. I am selling more and more of clothes:
1. Who needs a wardrobe when you're 35 and your job title is patient? (HOWEVER,  I do not sport hospital fashion, rather I am neurochic,,,, and you could be too.)
36. When asked what I do, I no longer say writer or painter (which are both true), or dancer or choreographer (long - gone professions), 
1. I say patient. And that is at least 3 jobs in one.
   
2. I am often completely alone.
3. I am not recovered.
4. I still have no prognosis.
37. I can not go a day in public without being asked, "What's wrong with you?"
38. I can not go a day in public without being stared at by children. 
39. I can not go a day in public without being stared at by people who should be my peers, or perhaps employees. 
40. I love Provigil. 
41. I love all pain meds and pain management procedures.
42. I am afraid my doctor will retire, and I will have no one behind me.
43. I avoid people, even virtual people, when I am sad or conflicted.
44. I gave my birthday away this year, not because I don't want to age but because of what this birthday signified... what should have been the crest of closure.
1. Please take a copy of my birthday for yourself.
45. I have made scenes and thrown cups of frozen yogurt in response to injustice.
1. I have been stupid and assertive against drunken privileged white men harassing a homeless black man. 
2. And when the cops showed their racist spirit, even the black ones, I opened up my mouth again and took badge numbers and said things that could get me arrested.
3. I am a defender of my rights. 
4. I am a defender of my people. 
5. I am out of control more often than before. 
6. I am tough, and I can be mean if necessary. 
7. I may be a cripple or a glamour gimp, but I'm not gimpified. 
46. Please help me Gimp This here and elsewhere.
47. Doesn't asking for help suck?
48. Whole numbers and silence are for pussies.

PS I am not participating in POST (Philadelphia Open Studio Tours) this year. See right column top for more info.

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.

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).

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.

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.
    

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.

"What are they even talking about?"

UP YOURS

I'm a mixed breed when it comes to politics. A socialist-capitalist, perhaps; an independent with no party to call home, not green or blue or red...but maybe pink. Yes, pink would work just fine for my party colors.

But who the f*** cares?! We have basic human rights!!! We have healthcare reform!!! Right? So, up yours, Republicans, with your nay, nay, nays. It's our house now, and you're not invited.

UHHHH....HUH?

I have no idea yet how, when, or to what extent Obama's new plan will benefit me and my universe-wide fellowship of chronic sickos, neuro gimps, 30-yearish-olds with bones of 80-year-olds united, disablees [sic] on the dole...

Yet, I have big plans, with a capital B, for my reformed healthcare plan...once I figure it out. One thing Obama didn't account for - neuro-ites with cognitive conundrums. So Pres, if you're reading this, could you please have one of your lackeys produce an interactive how-to-benefit-when-you're-a-gimp online tutorial rendered for a 5th grade reading level?

HAHAHAHAHAHAHAHA

Regardless, I'll be checking in with the "right" people to find out what my new rights and responsibilities are as a socially secured certified gimp. In the meantime, we might as well have a giggle.

Thanks to MoveOn.org, I got my daily guffaw, and I'm here to share the golden gift of levity. Apparently, it holds similar benefits to Resveratrol and broccoli.

From MoveOn.org:

Yesterday, after President Obama signed health care reform into law, Republicans were out in force doing what they do best lately: spouting total, ridiculous, incomprehensible nonsense about reform.

When it comes to health care, it's like they speak another language. "Socialism"? "Government takeover"? "Death panels"? Do they even know what those words mean?

If you're confused, you're not alone. But we can help. Check out our fun new video that translates all this Republican-speak into plain English:

PS We have one more responsibility:

"The House has passed historic health care reform. Now it's time for the Senate to finish the job. Pass the final fixes to the health care bill immediately."

Sign the Petition

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.