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.


False Alarms Are A Bitch (that's so not PC but f**k it)

For those of you that were planning on visiting or sending me cards and pricey gifts while I twiddled my time away at the hospital yet again, I'm sorry to disappoint you, but the prison sentence has been terminated.

At 10:45 AM, after numerous un-returned phone calls, I made my last and final call, where I must admit, I got a little bitchy. After all, I didn't know if I could drink my morning coffee, take my meds, have a sip of water, or eat anything (which with my appetite I could care less about, but it's the principle!).

As it turns out, my doc just temporarily forgot how stubbornly independent I am, and he wanted me admitted because I'm single and live alone. How's that for rubbing it in?!

The good news is my OUT-PATIENT surgery to re-implant my permacath and portacath is tomorrow, and I begin OUT-PATIENT plasmapharesis Thursday.

So you know where to find me for the next 3 weeks - either sleeping thru plasmapharesis on the apharesis floor, or sleeping on my couch after the plasmapharesis. For those of you that haven't experienced plasmapharesis or never heard of it, look it up. Just kidding.

Basically, it doesn't matter how big or strong you are, this amazing procedure knocks you the f**k out. And it leaves you stranded without an immune system, which if you're screwed up enough to need plasmapharesis, it usually means you're better off without your own immune system, because it's a bad, nasty, recalcitrant, serial killer of an immune system that must be discarded as biohazardous substance immediately and forever.

PS That's not me in the picture. And even though it may or may not be degrading, salacious, or inappropriate to some, I thought it would grab your attention. After all, it did mine. Think of it as a little gift from me to you for causing you any more worry than I already have. Don't thank me. I'm just, ya know, generous like dat.

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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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