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.


Subjective, Objective, Fact, Figure, Data, Ativan Hangover, Expectations, Boohaha

Guess what? I'm tired, frustrated, and I got my Ativan! So, this short update is going to be full of wonderful typos, blips, and hopefully nothing i will be embarrassed of tomorrow.

My mother and I left this morning at 7AM for my 11AMappointment with Dr. Pardo at Johns Hopkins National Research Center for Transverse Myelitis and got home at 10Pm.

Great Uncle Avrum (who we both call Avrum; he's 2 years older than my mother), who lives in Baltimore, picked us up at the train station and stayed with us the entire day as our familial-happy-to-do-so-chauffeur-with or (mostly) without us-waiting room-sitting-good-conversationalist-support.

Right now I'm hungover on Ativan (TONIGHT'S USE: sedation so that my Myocolonus doesn't turn my 2-hour 3-body-part MRIs on "more sophisticated equipment into a 10-hour engagement), enjoying my favorite and healing screwdriver, just finished a few M&Ms (see Friday Night & the 10 Distractions for the familial benefits of M&M®s) and my night meds cocktail, which could put a horse to sleep (apparently I am more of a rhinoceros), laying in bed and trying to make sense of the day.

Subjectively, I'm frustrated as hell. I expected to go in there, have the docs say, OK, you have transverse myelitis (TM), your treatment isn't working, let's try X, Y, Z.

Instead, after 10 hours of doc visits (we were almost never left alone) and more tests, and orders for more tests, and more specialists visits, I'm more in the dark ( vision is going in my left eye), than I was before.

Objectively, which I have no capacity for at this moment, my mother and the few and very intelligent friends whom I spoke to this evening felt that this is the right path. That the treatment and repeat treatments that I've been having aren't working, so obviously there's some globally larger issue that needs to be solved. Which is basically, what the docs at JH said. And who better to solve it than the leaders of TM and neurology?

But i love my doctor here. He makes me feel hopeful. He gives quick answers and quick solutions. Unfortunately, none of which seem to be well as I'd like them to...or support the data timeline for a healthy prognosis.

So here's the quick synopsis from a tired-blurry-eyed, subjective, sicko of what the experts at JH are thinking/doing:

  1. They will make no absolute diagnosis without all the data (the hospital did not send all of my records)
  2. They think my TM is part of larger neurological disorder and immunological disorder
  3. The next treatment path, if they verify the TM, will be chemo
  4. My current doctor is against this treatment path for women of childbearing age (but who wants to have children with a vision-balance-challenged gimp anyway! :)
  5. I need to see a neurological ophthalmologist for my lack of ability to recognize light or color or peripheral sight out of my left eye (I better not need a new prescription; just got fab new glasses). Great...another specialist.
  6. i should not be walking around with a permacath extruding from my body as it poses serious infection health risks. Duh.
  7. I had some super T3 MRI of my brain/Cervical/Thoracic Spine with GAD.
  8. Results from the new MRIs should be back tomorrow or next week.
  9. More blood work this week.
  10. The technician was very cute, flirtatious, and flattering, but I hope for my sake i don't have to see him again...there...tho the attention was nice.
Caught the train just as it was leaving Baltimore. Poor mom, had to pay double fare as I slept off the Ativan.

That's it for now. No realizations. No mellifluous writing. Just the facts. But it beats "being in the dark", which I'm about to do with great gladness.

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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.
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