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.


Todays Our Day...It's Celebrate Rare Disease Day!

I'm not adding my two (or 50 for those who know my verbosity) cents to the linked title above. My severely preggers cousin (love ya Mandy) posted it on my FB page today, which without her I wouldn't have known that today is MY holiday!

...Another very telling ignorance - I don't even know when it's a national (or maybe even world wide?) day in celebration of me - and many of you who read Neuro Detour or know me personally, know that I'll find any excuse to celebrate. And when I say celebrate, i mean CELEBRATE.

The linked article
(click on the title of the blog) is written by a fellow rare-disease-fighter, Wayne Brown of Buffalo who has Acromegaly. While, he may not be as rare as we TMers, take heed. He's good. He's right on. And, he's published! Congrats and thanks, Wayne.

What he didn't say, but I will:

Go buy some champagne (Freixenet works on most of our budgets :) ) and take the day off from being sick...if you can. Let everyone around you do everything you need or would normally do today.

Do nothing but relish in YOUR day.


PS I think all of you non-rare-disease sufferers should also celebrate this day by sending cards filled with money - lots and lots of money - to your favorite rare disease sufferer(s). We're most likely on a tight budget and a little (or lots and lots of) extra $$$ for bills, insurance, meds, or equally important, some self-indulgence is just one way you can make a difference.

Another option is to take that money and donate it to the charity that is working to cure their illness. Whether you're the sicko or the sickee, today's one of many days to do something good.

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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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