SINGLE, SEXY, & GIMPALICIOUS SERIES: The Poetics of Dating: Gimp Style.

FIRST, AN UPDATE. 

SECOND, THE GIMP RIFF (you're expecting)

THIRD, PS: Related Articles, Citations, Further Reading, Etc.

FIRST
Among the 52 unpublished backlog of post drafts I've started, perhaps finished, maybe edited and re-edited until I forgot what I was writing about, or where I was (true story), exist various series, or new themes I've been considering, researching, or experiencing. When the stars align, and I come back to the EDIT POSTS/ DRAFTS pages, I'm now as overwhelmed by the enormous task of choosing what to edit, what's ready to go and just needs a proof, or a pic, or a link, or which posts are in neuro cognitive impairment chaos.


Neuro is as Neuro does
I've decided that it's time to forgo my perfectionist personality, accept the limitations of my brain and body, such as my inability to experience time in any sense, or how my brain shuts my body down when it's over-stimulated (perhaps explaining the time issue), or how I have difficulty knowing where to start, where to end, and remembering the feeling or even the experience that prompted me to start that obviously imperfect post, as it's still in hiding - buried in the chaos of the Internet, or nets, or intra-brains, wasauchimmer! 

e.g., The former should have been a minimum of 3 sentences, not 1 run on ramble. But, fuck it! I'm Neuro & I'm Proud! Say it with me, or make up your own: fuck it! I'm Neuro & I'm Proud! Damn, that feels really fucking good!


Seeking Closet Organizer Who Does Brains Too
To organize my brain and my health, I must organize my life. Part of that organization includes acceptance of what this life is - and I've been a neruo gal for 3+ years now, I should know, right?! 

WRONG. 

In neuro years, something like the Aztec calendar, or dog years without the hidden equations, I am 3 years, 9 days old. That's in Diagnosis Years. In Symptom Years, it's much more difficult to both pinpoint the date of birth(DOB) and understand what that means, re: age, experience, etc. 


I've now written words and erased them 5 times. So I'll stop my preface, and allow the post, the page to exist as is. And, whew, that was my point. Over the next few months, 

I'll be posting those 52 drafts AS IS. Why? Because that's the neuro brain, and this is Neuro Detour. 

If you want perfection, visit a proofreader's blog. If you want to understand, relate to, find solidarity in, the confusing, complicated, chronic, uncensored Gimp, Sicko, RARE Neurological, Chronic Pain, Autoimmune, Incurable and Unpredictable Labyrinthine reality of being an alien (and activist) like the conglomerate of all of the above, I've plenty waiting to see the light of Web, and Welcome! 

Now, now... the release of these 52 posts doesn't mean I'm giving up on writing well. Consider these AS IS posts as both confession, i.e., the underbelly of chronic illness, and the nomenclature of neuroism. As Yiddish is to Hebrew. Spanglish to Spanish or English, Schweiz Deutsch to Hoch Deutsch... this Neuro Detour gal is building the 1st Neuroictionary (and if ANYONE POACHES THIS I'll gimpslap you.. for starters).

Drum Rolllllllll: Introducing my Green Eggs & HAM-Inspired 1st Draft Impromptu Poem
So here goes. In the spirit of full-neuro-disclosure, I'm sharing this personal neuro-ly transparent post with you as what it is, an: 

1. AS IS, 
2. UN-EDITED, 
3. 1st DRAFT of a reaction, 
4. i.e., neuro-tangent, to 
5. the original 1st draft, which 
6. has been cut and pasted into 
7. an entirely new post soon to be published 
8. in the same manner.  
   

SECOND

Gimpalicious, 1-in-1 million & 1-of-a-kind* 35-ishWoman seeks Mad Love, or a 2nd date, or some fucking honesty.


Will you love me when I'm green?
Will you love me when I'm bruised?
Will you love me when my broken parts move
from the inside to the out?

Will you love your promises transfixed as dreams,
my stupid something beautiful to look forward to,
such as my stupid relentless hope?

Will you call me
if I strut my stuff with a Cane?
if I wobble with weak legs?
if I prefer to be carried for our first few walks in the park
by metal and wheels
and not your muscles, unbreakable bones,
arms I want to jump into,
arms I can't wait to jump into,
but I don't

Will you ask me to be your other
when I remember how many times I did the above
and how many times I was dropped to the ground
and when I looked up, looked all around, I was alone
and the bank of a beautiful future where I deposited my trust
ran off into the sunset, disappeared? in hiding?
aloof and impenetrable to recourse or punishment -
laws that no lawyer could convince a jury.



Might you love me with Allodynia? Any possibility
you'll still want to see me again? and again?
Would you love me with Edema, Brain Lesions, Blotches, and bluer than the sea?

Will you love me stuttering? Not dancing, but with a Walker?
Will you love me when I cry, because everyone has left?
including the vocabulary, that word, that word, invisible but exists?
Will you love me when I'm a blank page,
black outs mounting without an ounce of alcohol?

Will you love me when I wake - all night long.
When I hallucinate, degenerate, and hate those who berate

my brothers and sisters
and my body
and my mind
antipodal
from perfect,
nor reproducible, or
understood
by most white coats, residents, family, or medicine and science?


Will you love me when I stay home, supine and solemn?


Will you love my skin?
Will you always want to touch?
Will you love me gently, proudly, consistently?

Will you love me as I

• gad 
• about?

When I become a
gadabout, gadding gadding gadding
late, flustered, painted in flashes of heat and humility.

When I apologize for being me?
Will you believe me?

Will you love me
when I apologize

• for acts and inaction? 
• inert or bumbling like fireflies in a jar?

Will you love me when my ruler upsets us
the same and different? When I'm sorry
my body,
belonging not to you or me,
on best days and even better or worse?
when my rarity flips
from endearing to disease, an incurable disorder?

Will you love me when the government calls me a burden?

• and the neighbors, our friends too... as far back as childhood, 
• your sister, brother, mother, and mine, chime chime chime 
• in cahoots with ignorance?

When congress dumps me

• without prognosis, income, or insurance?

Will you love me when I'm purple, legs like a sunset, a black whole, an albatross.
Will you love me rolling miles of road without embarrassment?
When I stand up and shout, in solidarity with all inequality?
When I fundraise, volunteer, take phone calls from Indonesia
at hours you (hopefully) once believed indecent?

When you realize you might be a little bit racist,

• a bigot, a tacit player in the general disgust
• of gimps and sickos, even those not willing

to accept the global, local, my, your city's architecture of disrespect?

Will you love your choices, your words that stumbled
from your mouth
to the air of reality...?
When you wake up to the same woman
who flirted in fancy panties, all fantasies fulfilled
who turned you on with her body and beauty...

who you told  
I love you, you're the best
I've ever had,
a smile, beyond imagination

with whom you dreamed in daylight of every kind of a fun,
a fancy future, plans, travels, a family...     you called it infinite

Will you love the same woman forever,
follow through with your avowal when the feast of her flesh

• fleshes
• out, 

• widens, unfurling a face 
• carrying forty strange pounds, uninvited guests?
• When I don't know how to make them leave? 
• When they come back again and again, 
• benign to your threats?

When she, pardon me, I am a changeling, one-and-one-half
multiplied my size, the size that makes you feel your sex?
Will you love

• the fat face?  passionately?
• perched upon my face.

Or when I choke, dry heave, unable to swallow
the tension,
skin not skin
stretched taut as a sheath
of tightrope.

Will you love my pain and muscle it away?
When it consumes me, removes me
from our home to my second home,

• a homely hospital
• without a bed for two?

Will you love me then?

• One night. One week. Two weeks. Three weeks. More...
• and repeat
• One night. One week. Two weeks. Three weeks. More...
• and repeat
• One night. One week. Two weeks. Three weeks. More...

sharing a bedroom, with stranger after stranger,
a floor of helpers and healers, (I know they will not leave me, judge me, resent me)
but not with you?

When pain is human, so
huge, the losses

• One night. One week. One year. Three... More...
• and repeat

and consume, and my dream
is to step out
onto that tightrope,

• 14 stories, 18 stories, a rooftop deck, and 
• finally be brave 

enough to die.
and repeat
and repeat
and repeat  

until I accept the losses. not poetics. loss is loss. a  father, gone. a mother, gone. a brother, so far away. a sister, condemner, judger, so real they believe my pain is theirs and theirs is greater because my pain is so great, and newsworthy, the greatest pain in the world, with references to prove it.

Will you love me when you realize life is pain?
When you forget then remember the equation:

l= [p2 + p3] + x 

    [l x l2] ~ x

Will you love me when you understand every morning
I have to choose another day:

pain? you? us? or an end that doesn't exist? because love
should replace the pain, smite disease, because love

mostly, does tell me to stay more
than when love tells me to go.
Because I'm able to trust despite history and love you
more than you resent the cages you see around you;
otherwise known as chronic, incurable, disease;
otherwise known as me?

###

DISCLAIMER: This is a poem, it is not a real singles ad. It is a commentary, not a solicitation.

THIRD

 

Related articles and Web sites

• Singles with MS (chat room)
• "NeuroArts" Panel Presented at ISEA 2011 (thebeautifulbrain.com)
• My sicko ex should go down for lying (thesun.co.uk)
• Late Night Gimp Fight - review (guardian.co.uk)
• How To Write A Love Poem (theawl.com)
• Fetish Confession: The Gimp - Unmentionable Taboo, or Trendy New Plaything? (sexytofu.com)
• 30 Patients With Chronic Neurological Disorders Treated With ExAblate Neuro (medicalnewstoday.com)
• Does 'The GIMP' Need A New Name? [Poll] (omgubuntu.co.uk)Dating with Chronic Illness (Web search, many useful links)

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: 11.19.10, Day 3 of 3

I tried... this time i even used you tube's video record format . ugggh. what is this world coming too?

See yinz in 'da burgh an''at.

MS NEWS: MS Drug's Epic Journey From Folklore to Lab

AUTHOR'S EPITAPHIGRAM:
You can read my ramblings and get a giggle or 27, or you can be a lame ass and just click on the post title above to read the entire article. Also, if your vision sucks like mine or you're a lazy m.f. and you just want to look at the interactive graphic timeline, which, like THIS BLOG POST, you can share the love on Facebook, Twitter, and many of your social networking sites.
But be warned, if you take this route, I'll hunt you down and find a way to make all those stupid people that think neurological disorders are contagious correct.
So, carry on. And enjoy!

******************************************

According to an article by Peter Landers in The Wall Street Journal,

" research into ancient Chinese fungus that propagates inside insects yields potential relief for multiple sclerosis."


GIVE ME MY BUG GUTS!
Many of us may already be gimps (aka raspberry ripples - love this newly "learnt" British Slang - so tasty!) , we may be comprised of plasma and proteins of 10s of 1000s of strangers, and soon, we may be bug guts too.

As a professional TM/MS/RSD-er, I be well-school [sic(k)] in the cross- over of side effects, disabilities, and treatments.

For example, the IVIg that I've been receiving regularly (up to to 5 days every other week) to treat, originally, my Transverse Myelitis (TM), also is used to treat many Multiple Sclerosis (MS) patients, AND NOW has been found to provide relief to Chronic Regional Pain (CRPS aka RSD) patients. Even though IVIg's become holy grail of fixed trifectas, many insurance companies, including the profanely corrupt AETNA and some Blue Cross/Blue Shield's (to name just two super-sized crooked crook companies), REFUSE to PROVIDE COVERAGE for this pertinent treatment, even when there are no other options.

I've witnessed it too - all of it.

After receiving IVIg for the first time, a dear friend with Stage 4 RSD who has gone through 2 Ketamine Comas (I receive an Americanized watered-down autocratic FDA-version of this treatment) in Germany only to receive short-term remissions, gained an 80% relief in pain, and in RSD percentages that's like erasing 10 natural child-births from your body at once. And of course, her BC/BS refuses to cover home infusion of IVIg, so she must travel 2 hours to receive it in-patient - totally unnecessary and totally fiscally irresponsible and wasteful.

Surprise, surprise.

If all entrepreneurs thought like insurance companies, we'd live in an ugly, ugly world my friends.

OK, back to the bug.


NATURAL HEALING
The article validates much of what Chinese medicine and Complimentary Alternative Medicine (CAM) has to offer:

For centuries Chinese medicine has seen restorative properties in an Asian fungus that invades and destroys insects. Now a drug drawing on that age-old lore is poised to become an important new treatment for multiple sclerosis.

A Food and Drug Administration panel unanimously recommended this month that the drug called fingolimod be approved as the first oral medicine for MS, an often-debilitating disease in which the body's own immune system attacks a fatty substance protecting nerve fibers. The drug, assuming it gets final FDA approval, would significantly expand the treatment options for the hundreds of thousands of Americans with MS.

Nature was the first source of medicines to treat human disease and remains an important one. The Japanese scientists who discovered fingolimod added their names to a list that goes back to the European chemists who derived aspirin from a substance in willow bark and Alexander Fleming, who found that a fungus produced a bacteria-killing substance called penicillin.

TIME TRAVEL
We'll probably have to go to Canada or Mexico to get access to this crunchy, winged medical miracle in our lifetime (OK, I may be exaggerating a big...how 'bout in the next decade), but it may be worth the trip. And boy, do I need a vacation. Mexico would be perfect if heat weren't so debilitating for us MS/TMers. Quebec would be gorgeous too, but not in the winter for us RSD-ers. So plan your trips accordingly, my friends.

Or maybe we could just accidentally find it dipped in chocolate and wrapped in plastic wrap on a styrofoam plate at our local Asian grocery???

Either way, let's get buggy...

(of course, I'd have to try to find an appropriate personifying video...this one's a stretch, but it was this or something that would be rascist coming from a white, jew, atheist, socialist/capitalist, rasperberry ripple. PS they use the F-word once and with perfect timing and pitch.)

Neuro Detour Presents:

Buggy Saints Row: The Musical

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.

Ketamine Cam: Day 5, Friday, May 6, 2010

I almost typed that it was 2015, not a wall street bubblegum thumb-o just a mel-o-neuro...but alas, I almost lucid enough to catch my own bottom breaking catastrophes, or at least i have the doctors who can point me in the right direction.

Todays' cam includes a mom cameo and no unintentional videotaping screw-ups, so sit back, relax, take an ativan if your doc prescribes and enjoy the ride...

Ketamine Cam: Day 4, Thursday, May 6, 2010

Yet again...only this time it is a video biopic a monther doesn't love....



except she doesn't have to worry about it, because cuckoo mel messed up again. Let's hope tomorrow is better. The jist of the video per mama mel's memory (since mine is rendereded useless x2) is:

1. i'm soooooooooooo thrilled to have my mother here
2. all you gimpee mamas and gimplessee mamas better take heed from my mama and clean your adult child's apartment and help them take care of the 3 full-time jobs of being a professional sicko
3. and ooooooh don't you wish you were me....or at least me on my newest treatment lalalaland IV Ketamine

Ketamine Cam: A Video Biopic Only a Mother Could Love

IV Ketamine for RSD aka CRPS

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.
    

"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

Obama Considers Extending COBRA Subsidy...and Other Mel/Health Care Ramblings

THE PLIGHT OF THE JOBLESS SICKO
For those of us that became sickos, were then fired from our jobs for "incompetence due to your illness" or simply laid off (perhaps you were the first target too), are now living off of Disability, and spending some of that on COBRA (thanks to the subsidy), barely getting by with multitudinous doctor and medicine copays, dreading the day the subsidy ends, and scared, strained, and stressed for the impending, unavoidable date that COBRA ends and the months or years that rest in between COBRA and Social Security Disability Insurance (SSDI)....read this article from Workforce Management.

According to the article Obama Considers Extending COBRA Subsidy, "The administration is considering whether to seek an extension of a federal law that subsidizes COBRA health insurance premiums for workers who are involuntarily laid off." To read the entire article click on the title of this post.

Let's gather forces, get informed, and make this happen - not just in our lifetime, but in the now-time.

From the BBC:
"So what are the problems with the US system?

Healthcare costs for individuals are rising dramatically.

Premiums for employer-provided schemes have risen four times faster than wages, and are now double their cost nine years ago.

The percentage of employees with an annual deductible greater than $1,000 increased from 1% to 18% between 2000 and 2008.

As a nation, the US spent some $2.2tn (£1.34tn) on healthcare in 2007. That amounts to 16.2% of GDP, nearly twice the average of other OECD countries"

ARE YOU SCARED? AND IF NOT, WHY?
I am.

I'm scared shitless (shitless is also a side effect of Transverse Myelitis (TM) & Multiple Sclerosis (MS), as well as many other neuro, autoimmune, and chronic illnesses, and/or it can be caused by or exacerbated by the meds we take) for the day I lose my health benefits.

What insurance company will insure a sick perso n? And at what cost?
(linked is an informative article from the NY Times.)

Click Obama for his thoughts on the progress of the health care reform bill.

If you're sick, best option: DIE.

Years ago, after I was hit by a car and I tried to get health insurance, I was turned down over and over again. I wasn't even given the opportunity to pay exorbitant fees, which, as a young professional dancer (i.e., gives new meaning to the phrase "limited income") busting my ass teaching, waitressing, performing, and going to coll ege, I wouldn't have been able to afford anyway.

This is why we have to take action, speak up, sign petitions, write letters, inform friends, family, and neighbors of the importance of health insurance for all. This is why we should all look to the organization, Health Care for America Now (HCAN), and join them in lobbying for universal health care.

Take action with easy links on their Web site.
Become a fan on Facebook, then invite your friends to become fans too.

HCAN isn't just for people with chronic illnesses, but since this is a site dedicated to that topic, here's what they have to say about it:

People with chronic diseases

HCAN is advocating for reforms that will require all insurers to provide standard, comprehensive health care benefits that meet your needs from preventive to chronic care management services. The plan will have low out-of-pocket costs (like co-pays) so you can afford to get the medical care you ne

ed at any time. The public health insurance op

tion will allow patients to choose their doctor and hospital. Additionally, insurance companies will be required to cover pre-existing conditions so everyone regardless of health status or history can get comprehensive benefits at fair and stable premiums.

Socialized medicine - universal health care - is an absolute must have.
"It's [universal health care] long overdue. There has to be some sort of centralized universal health care available to every citizen in this country. Canada does it and it works," says Iya Garrett, R.N. (and one of my nurses).

Whether you're sick today, tomorrow, or in your (hopefully) golden years, access to affordable health care is a human right, but in our country it's a privilege. Anyone without insurance is a victim of a selfish society.

We even have a president that supports this. (Note: Video link)
And a cell phone company.
And believe it or not, Walmart.

How many of you are victims today? How many of you have ever been victims of our live-to-work-to-get-health-insurance society?

I abhor being a victim, especially to multi-billion-dollar corporations. And I refuse to allow its gated castle nether-world to rule over my health, lack there of, or death. I'm definitely no know-it-all, but I've been a victim of the corruption pandemic that plagues people with rare diseases, or just plain-old healthy insurance carriers.

Help me. Help me find new ways to guarantee that within this year or next, there isn't one person with the basic human right of access to health care.


OH MY OH MY, THE SENATE PASSES HEALTH BILL...SO WHAT?
Yeah, Obama's doing a great job pushing and pushing and pushing his (and my) healthcare reform agenda. But, lawmakers are still divided whether there should be a new government-run insurance scheme.

Socialism? Oh, my! You mean we have to split human rights evenly? Won't that ruin my capitalist agenda? Social responsibility? What the f**k does that have to do with my landscape-groomed-3000+ square foot home-lifestyle? says the capitalist, suburban, wealthy republican (sans republican Senator Olympia Snowe).

Note: above super duper unnecessarily long link will take you to a video.

According to Paul Adams,
a BBC News Correspondent based in Washington,

"on the long, tortuous road towards reform of America's healthcare system, this was a decisive moment. Several members of the Senate Finance Committee called the vote historic. The Washington Post this morning reported that not since Theodore Roosevelt proposed universal healthcare in 1912 has any such bill come this far. After months of debate, the committee's chairman, Max Baucus, looked delighted and relieved.

In the end, those in favour of the bill won comfortably. This was due in part to a Democratic majority, but also to the support of Senator Olympia Snowe, who became the first Republican to back any of the bills proposed this year.

But this is not the end of the process. There are many more legislative hurdles to overcome before it becomes law. In the meantime, debate will continue to rage."

Let's channel our rage to win the debate. What do you think?

Let the TM Word be Spread like Butter!

A lot of good, bad, and who the hell knows has been going on in my transverse myelitis (TM) life, but I'll get to that later.

For now, let's toast and boast.

I was invited to write an article about myself and TM for The New York Optimist, an online magazine with more than 55,000 readers. The publisher liked the article so much he made it the cover article.

I'll continue to spread the neuro word here and there. But for this week, let's hope that 55,000 more people get a little edumecation [sic] about how special we 1 in 1 million-ers are...

To us.
To PR.
To a cure.
To recovery.
And in this instance to coverage.

Tonight I may eat a butter sandwich with a glass of vino to celebrate. And maybe if we channel our energies on the word spread we'll accomplish so much more as a unit than individually.

spread, spread, spread, spread, spread, spread,spread...

I'm feelin' it (except in the places in my body that are TM numb). :)

Until later,
Melanie

Take Action...There's Hope for Myelin Repair

This just in from the Myelin Repair Foundation

Bottom line:
Myelin Repair = Spinal Chord Disability Extinguished. Wow.

Top shelf:
All donations are matched - kind of like doing birthday party shots.

Who knows:
I'm just doing my job here of spreading the word. It's up to you to make the decision if this is a clinical trial you'd like to support. If I had even an extra $10, I'd chip in...but I don't. My feeling: it's worth the investment. Multiple Sclerosis (MS) is not the only demyelinating disease out there. Transverse Myelitis (TM) fits the bill too.

The Call to Action:
(copied from the Myelin Repair Foundation Web site)

Help Us Raise $100K to Fight MS!

Steve Miller, Ph.D.
MRF Principal Investigator

Myelin Repair Foundation (MRF) wants to fund a clinical trial for a promising way to treat MS -- by "tricking" MS patients' immune systems into not attacking their myelin.

MRF Principal Investigator Steve Miller, Professor of Biomedical Sciences from Northwestern University, has a promising idea for an MS treatment.

In multiple sclerosis, the immune system sees myelin proteins as foreign material and attacks them. Recent research indicates that we may be able to "trick" the immune system into believing that the myelin protein is not a foreign material.

Bringing this idea to a clinical trial will help us determine whether this innovative treatment is safe and effective for MS patients.

Visualization of myelin protein attacked by T-Cells

MRF needs your help to make this clinical trial a reality.

Help us raise $100,000 to fund this trial.

The total cost is over $2 million. However, through collaborations with other funders, the MRF is providing only $200,000 for the trial over the next two years. ($100,000 for the first year and $100,000 for the second year).

Donate today. Help us reach the goal of $100,000 by June 30, 2009.

Your contributions to the clinical trial will be matched 100% thanks to another generous donor, bringing us straight to the finish line!

Spread the word to 10 friends and family about the potential of this clinical trial and help us spread the word to more people.

Scott Johnson
President
Myelin Repair Foundation

Notes: This is an early stage clinical trial being conducted in one research institution. All clinical trial patients have already been selected.

If for some reason the clinical trial does not move forward as planned, you can be assured that 100% of your donation will be used to support other myelin repair research conducted by the MRF.

Learn More:

• Research behind the Clinical Trial
• Myelin Repair Foundation's Efforts to Accelerate Research with Clinical Trials

Donate Today

Show your support for speeding up research on MS by funding our clinical trial!

Use the widget above to help spread the word.

Tell Ten Friends and Family

Tell friends and family about Myelin Repair Foundation's promising clinical trial. Encourage them to learn more about our work and donate to help raise $100K!

Register for our e-Newsletter

Learn more and keep up-to-date on the progress of research on myelin repair, the next REAL hope for treating Multiple Sclerosis.

The Myelin Repair Foundation is the only organization exclusively devoted to investigating the way in which the body creates and repairs myelin — one of the most promising approaches to treating MS

***

IVIg is On & in My Main Vein: February

A Belated Update...ooops
This month's treatment (2/9-2/13) - 5 glorious home-bound(ish) days of 10-20,000 people's superior antibodies infused into my body - went by as quickly as any 5 days in the life of a neuro-gimp hoping for recovery.

In the week or 2 prior to this month's treatment, all I could do competently was sleep. Strangely enough (and in total opposition to my reaction to last month's treatment), I was on a 20K high - that is 20k people breast stroking (that's a nod to swimming...ahem) through my body. Now a sickly high is very different from a healthy high or the blessed, but illegal in this country, high, but it's a high none-the-less. And experience is relative, as are pharmaceutical and non-pharmaceutical narcotics.

Aside from headaches and nausea (possible side effects of the IVIg), the good news is, I feel as though I've finally stopped deteriorating. So, I'm hoping - which can be a bad thing to do, as it's no different from an expectation (i.e., major boo hoo potential)- that next month's treatment is going to mark the start of more noticeable improvements.

In my first few days following treatment, I was elated by a decrease in neuropathic and general pain, increased cognition and strength (but still no stamina), and a decrease in visual impairment. However, as my angry antibodies seem to be eating the yummy prey of the perfectly concocted and diluted serum, these improvements are feeling the bite.

A lot of the old frustrations are stubbornly sticking to my spinal chord, and February is proving its reputation as one of the shittiest months of the year; in my case, including several less than feel-good procedures, including a urodynamics test, cystoscopy, spinal tap, and possibly an EMG (the test that I had 10 years ago following a car accident that prepared me for any level of pain) and an MRI, as well as the typical bloodwork, and a humbling "sample".

Aside from all the crap I listed above, I'm feeling "good enough", and luckily neurological disorders don't make you look like you feel. Surprise! I'm sick inside.

The truth I have to deal with, is that despite all the IVIg in the world, Transverse Myelitis isn't curable, and whatever level of recovery I have, will be just that - a level - not back to normal or back to Old Mel. Still struggling with that, but as I type here and my arms are burning and my fingers are tiring, I am so F*CKING GRATEFUL that we BEAT AETA and that Ativan exists and is on my script list!

I can't imagine where I'd be without IVIg, and if monthly IVIg 5-day home-bound infusions mean status quo rather than improving or deteriorating, I'll take that, but I'm not going to settle for it easily.

So on that note, I should try to get to sleep. It's medicine I don't have to pay for.