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.


Mel's Aetna Battle in the News...Kind of

My battle with Aetna has made it into a recent blog post, Advocacy for Patients with Chronic Illness: Be an Advocate; Save a Life, written by my pro-bono attorney, Jennifer Jaff. In it, she talks candidly about her experience (from both a legal and emotional perspective) winning my case against Aetna.

It's a quick read (unlike me, she knows how to get to the point).

I recommend reading the comments as well, which are authored by my mother and myself, as well as strangers.

So, if you go there first, please come back and read on (I've taken Jennifer's cue and employed brevity, I promise)...

Without Jennifer and her tireless work on my behalf, things were looking and feeling dire, and this is what I had to look forward to:

  1. I was about to start a much more aggressive and dangerous treatment path, which included immunosuppresive drugs (low-dose chemo), a 4th surgery, a 3rd round of plasmapharesis, and 1 more month "walking" around unshowered with udders protruding from my sternum. Sexy, huh?
  2. My TM and its myriad symptoms could have continued its progression, and further decline was imminent.
  3. I would have had to battle Aetna on my own, without the legal know-how, and you can probably guess how that would have ended.
  4. The realistic probability of a lifetime of disability and pain.

While number 4 is not entirely ruled out yet, its probability has just dropped like the stock market. And number 1 is still an only-if-absolutely-necessary back-up plan supplanted into the deep and unreachable gooey parts of my brain that no one, including bad ass self, want to go near.

BUT thanks to Jennifer, my family and I are able to refocus on the positive: my mother doesn't have to worry (quite so much), I have renewed hope in my own recovery, and I start treatment this week.

I'm still pissed as hell at Aetna that I'm 3-months behind in my potential recovery, which only has a 6-month window for maximum results. But I'm momentarily basking in the glory of the WE-BEAT-AETNA-WIN-NAH-NAH-NAHNAH-NAH. (I'm a really mature 33-year old.)

So, as we neuro-ites say...
"YAY" Jennifer.

And as I say (and have said)...
Please help support the work of Advocacy for Patients with Chronic Illness, Inc., Jennifer's company, with a donation of any amount (the more, the better :)). Without the support of people like you, I wouldn't have even had the opportunity to write this post. So give it up for individuals, like Jennifer, who are making a difference 24/7/365.

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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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