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.


Off for a Hospital Quicky

It's 5:14 AM. I want coffee. I want water...very cold water. I want cigarettes.

I should be...
taking a (lukewarm) shower, brushing my teeth, and applying just enough makeup to feel attractive. I should be getting ready to be outside my building in 25 minutes to catch a cab to Hahnemann Hospital--for my second port surgery this month (the first was a perma cath, this is for some kind of portacath).

I'm anticipating...
the cute, but clearly married nurse, will be waiting to prep me for
surgery. Or, Sharon, the nice forty-something nurse who calmed me pre-surgery last time when the idea of all this loss of self-identity overwhelmed me in a fluorescent room full of strangers waiting or recovering from more serious surgeries.

I'm wishing...
they won't make the same mistake twice (what a hospital staff person make a mistake twice--never!) and give me ketamine (yes to the horse tranquilizer, no to the Special K) for my anaesthesia. I'm hoping I don't wake from surgery in violent, lawless, yet strangely conscientious hysterics.

I'm wondering...
if they'll give me a script for good pain pills. And, how many men over the next year will stare at my chest (I assume that's where they're putting it--no one has told me anything) and not notice I have breasts beneath my pot?

It's 5:30AM now. I have 15 minutes to get out the door. There's nothing worse than a tardy sick person.

I am stating the obvious by saying I'm procrastinating, but this is not because I'm scared, or because I'm about to go to the hospital. This is because I'd rather be writing, dancing in elevators, and working than being sick.

Portacath Photo Credit:
Portacath from Wikipedia,
originally uploaded by penmachine.

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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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