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.


We Won!: An Aetna Sucks Update with a Fairytale Ending

Simply a very quick update...More ranting and raving later.

Thanks to the non-stop diligence of my pro-bono attorney, Jennifer Jaff (and others who will/have receive mention in future/past posts), Aetna has overturned their decision to deny IVIg treatment. After 3 months of denials and appeals, I can now get the treatment I need - whenever, wherever, and however necessary - to give me a chance at recovery.

And Jennifer got them to make this decision prior to our scheduled hearing this Wednesday. She's amazing.

I could spend hours thanking all the people who made this happen and days cursing all the institutions that made this ridiculous and corrupt battle necessary, but this is just an update I'm going to keep it as such:

Friday 1/9:
  • Aetna - overturns denial of treatment
Monday 1/12:
  • Me - Blood work to check IGA levels (?) or something like that
Wed/Thurs-? 1/14ish:
  • Me + Home Nurse - Begin IVIg treatment - 5 days
This weekend 1/9-1/11:
  • Relax, recuperate from stress of last few weeks and def last 48 hours, celebrate - wine, vodka, friends, give thanks, drink lots of water, prepare for treatment.

With gratitude, relief, and restored hope,


1 comment:

  1. That's wonderful news. Hooray! Here's to heroic efforts and to recovery.


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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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