1. On Losing - voice, rhythm, the word I want to place here; 2. Quote of the Moment... 2 versions.

1. 

On Losing: 

voice, rhythm, the word I want to place here

I have been lost. This happens from time to time - in taxis en route to....?, yes, it's 1995, how did I get here?, where is my shawl?, where did all this blood come from?, my chin's split open!, did I fall? was I mugged? pushed accidentally? and when? and where? and how?

Since we last saw each other, I've lost my voice - the CRPS taking over more of what was once mine. But my voice has returned, speaking and vision (take this how you like). And I lost you in the crossfire. So, how have I existed these past few months without you?!

If I answer, I'll give away the punchline, much like premature textulation(TM)*. Please forgive me. I'm excited to be here, to say hello and send gentle air hugs to my brothers and sisters, my non-neuro friends and family, readers and new readers too. We have a lot of catching up to do - more than I can recall (lucky you).

Cross your pain meds and hope I can still write. Put your pain patches on, 'cause I'm going for a ride... hopefully one that's followable (insert stupid smiley face).

*Neuro for sending a text before finishing typing it.



CALL ME SISYPHUS

Being sick, recovery, relapse, see then not, a blur, double, triple, quadruple, kaleidoscopic, multidimensional as though a person becomes 2, 3, 4, of itself sideways and back ways - 8-dimensional "sight". This is called living like Sisyphus, better, worse, up, down, stand, sit - just for a moment, bed-ridden, hospital-living, home-bound, out-bound with caution: the right shoes, the necessary accessories to protect this angry body and its burning skin from the vicious knife-throwing wind, crippling cold, or heat that melts what muscle we own - temporarily as it is, even our eyelids, napping beauty.

I'm embarrassed by my absence. My weakness. A sadness that waffles among hate, fatigue, active ignoring - the phone, the people I love who are ignoring me, leaving me, forgetting, sick of a sicko with bravado. This winter and spring I relapsed and relapsed and relapsed and relapsed with flares and flares and exacerbation after exacerbation.

TRIFECTA ATTACK

The trifecta, all three of my neuro disorders, turned on me consecutively and then for the finale in concert. Scarier and more than "more" upsetting than the CRPS flare that took my breath away (truly) or the back to back MS exacerbations, was my first TM relapse - 3 months after my 2-year recovery mark.

Lucky

This time, my organs were paralyzed rather than my mobility. Whew! The last weekend of my family visit to Pittsburgh, I filled it with a first-class party in one of Pittsburgh's esteemed hospitals, known as Presby - where, without an adult CRPS specialist anywhere in Western PA, they kicked me to the curb the morning after I arrived by ambulance. Short and sweet and useless. Had I been in Philly, that would have resulted in at least a 1- or 2-week respite.

That Ain't My Ho'Po 

In the ER, my entire body convulsing in myoclonic seizures like a pissed off horse holding a 3-hour grudge they quickly got me into a room, as I was scaring the other ER attendees and some residents too. Once in my aproned-off room, still myoclonic and my bladder frozen and uncooperative, filled with 1600cc - enough to Wow! both of my nurses, as well as the idiot resident who squeezed my hand like a corporate power shake then slapped her unusually large hand down on my thigh. 

Needless to say, as I was having my bladder professionally drained, I schooled the daft resident in CRPS symptomology and etiquette.

Let's Celebrate!... before and after we mourn.

I finished the wild weekend, weak and in heightened CRPS pain enjoying the company of my family, especially the cuddle time on the couch with my grandmother, not knowing that would be the last time I'd see her, my nieces, and my bro, during the part of the year - my 7-year-old nieces birthday party!

Which, by the way, I plan to party like a single-digit-year-old this birthday year. Theme suggestions anyone? July's a comin'.

Having gone through divorce, becoming a full-time patient with three neurological disorders, two of which are very rare, incurable and misunderstood, I've learned, or rather taught myself to live without expectations, or at least try my damnedest .

Huh? 
Shit, I forget where this paragraph was going. Neuro Brain.

I'm no Schwarzenegger, but I'll be back (with a heavy German accent).
Pardon me, while I pause for a day or 2 while my brain recovers. I'll return with the rest of part 1, and hopefully I'll even get to part 2 in the same post.

To be continued...

PS There are about 10-15 unfinished posts wasting away in my draft queue. By quick glance, some of the titles look pretty juicy. Don't be concerned if you come across a brand-spankin'-new post dated in 2009, but stepping out in 2011. This time, it's not dementia - most likely. I'm attempting the neuro-impossible: to finish what I start.

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.

Ketamine Cam: 11.17.10

As usual, Ketamine 1 pt. Mel's recording skills 0. This was actually a 9 minute video, so apologies in advance for its utter uselessness, except to let you know that I am both still alive and getting ketamine.

More to come. Lot's more.

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.

Ketamine Cam Day 2: with spills and special guests

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






ALSO, even though yesterday was the official Scatterneuries deadline, I'll extend it until Monday for those of you who are dying to take part in this brand new online game.



This one is boobalicious.

*****

UPDATE
7.16.10

With 2 weeks of plasmapharesis, followed by a nerve block surgery (link warning: video of actual procedure) of my left arm, and 2 days of ketamine boosters, I have not felt this good in a while. My pain is down to a 6, and I'm actually able to enjoy being awake, walking around, and I'm going to paint today for the first time since this last flare-up, which started over 2 months ago.

Unfortunately, my ketamine boosters will be further apart from now on because the drug can cause liver damage (and it's basic scheduling protocol), and if my LFTs are adversely effected, I can not get treatment for 6 months.

Since I've been receiving ketamine, the positive affects (if any) have lasted no longer than 1.5 weeks before they started to dwindle. This last month-long wait was excruciating. I don't know what to expect, or how I will handle, managing my pain with this longer break between infusions.

Normally, follow up boosters at this stage are every 3 months, however, we're going to try for every 2 and hope that my liver can take it. But since the nerve block worked, I'll probably be getting one every 3-4 weeks.

The good news is, the doc, Dr. Goldberg aka Dr. G, is super cool - like hip hipster in scrubs cool, the hospital in Camden, NJ is actually gorgeous (despite its location) and amazingly stylish for such an icky institution, and they have the best hand sanitizer I've ever used.

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

Let's Play! Scatterneuries!!

CATEGORY: RSD (CRPS) & BOOBS

TYPE: Multiple Choice

DEADLINE: July 15, 2010.

JUDGE: My Doc

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

Melanie is one swollen boob smaller thanks to my most recent IV ketamine boosters week. With my next set of boosters now 1 month away (for the first time), the question is:

1. Will Melanie have to wait a whole month for the other boob to deflate?
2. Will boob A catch back up to boob B in RSD swelling first?
3. Will Melanie just remain whopper-boobed (and is there a medical term for that)?

DIRECTIONS: Please select one choice from each drop down menu, then hit Buy Now! Make sure you include your contact information if you want recognition for winning and/or donating, or if you want your money back (winners only) or you just want me to know who you are.

Answer Now!

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

Your Money, Your Choice

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

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 4.12.10: Day 8...with special on-phone guest

There are 3 videos in this post, because I, ummmm, am still on ketamine while trying to be a rockstar procuder.




and here's #2:




and here's #3:

Ketamine 2: Week 2 in the Reclining Saddle again

and....

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

PS Find Cinnamon Cures!!!!