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.


Losing Vision, Losing Sight

Over the past few months, I've dealt with an irksome but manageable symptom: blurry vision. Annoying? Yes. Life-altering? No.

During the past two weeks, while I CONTINUE to wait for Aetna's response to our claim for IVIg treatment coverage and while my neurologist was on vacation, I began to lose my vision. On Tuesday, December 30, I awoke to the walls closing over my eyes - extreme blurriness, double vision, and lack of peripheral vision.

While the written word is my medium, since I can't see it, I'm compromising with myself. I'll be posting V-logs until I get the software and technology that I need to be able to communicate in the way I feel most comfortable, and coincidentally, the way I make my living. (shhhh!)

Today was a hectic, non-stop gut-wrenching, physically-emotionally-spiritually drop-you-on-your-ass-life-you-up-then-repeat-the-cycle-all-over-again day. (See, I can't help but write.) I'll let the vids (not my hair in them!) do the talking.

Losing Vision, Losing Sight - Part 1

CLIP 1: A title changed by a corrupt medical system

CLIP 2: It's My Body

Losing Vision, Losing Sight - Part 2
My Life Sucks, But I Rock

I could not occupy another pixel of space in this world today without thanking and acknowledging the following people and organizations for their combined support, advocacy, and services:

Jennifer Jaff, Advocacy for Patients with Chronic Illness, Inc.
Kris McFalls, IG Living
David Goldfield, Associated Services for the Blind and Visually Impaired (ASB)
Temple Institute on Disabilities' Assistive Technology Program
AM (Aunt Marci)
Dr. Arthur Huppert, Rheumatologist, Drexel University

For technology and assistive resources for the blind and visually impaired, I strongly recommend Temple and ASB (links above). Though locally based, they are national in reach.

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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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