Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.
Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.
About 33,000 Americans are currently disabled as a result of this rare neurological disorder.
Not one person with TM will ever know their prognosis.
I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. sucks, but I still rock.


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.

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!

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).

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

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If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (, a new social networking group that I started for people with TM so that we can meet and chat casually. It's only on Facebook for now, so, if you haven't already, join. It's easy.


In Pictures

Please Note: Some photos may contain partial nudity or depictions of medical procedures. Though I am in many of these photos, my reason for sharing these personal photos is to promote awareness, understanding, and advocacy for people with TM and other rare diseases.
To play the slide show, click the big play button in the center of the screen, then the small one in the bottom left corner. Click here for more advanced viewing instructions, and select "Help."

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