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.


Thanks Pharma, Biotech, and the Holy Spirit for Percoset

I'm tired. Really, really tired.

Not just because it's 1:57AM, I took an Oxycodone (generic for Percoset) 2 hours ago, I woke up at 6AM to meet a 1:30 work (extended) deadline...that I 4 minutes, I cried for three hours home and in public...for rational and irrational reasons, I spent my day in post-operative pain, I spent my evening in transverse myelitis full-body pain, I've been waiting three days for my next IV Ig treatment that Aetna insurance has denied twice in one week, I had to rush to the surgeon's office because another doctor told me my port looked infected, I'm mentally preparing to move tomorrow, I have $9 in my only bank account, I got out of a taxi mid-traffic at S Broad & S Penn Square and walked the rest of the way home because he pissed me off for being an idiot, or because I'm a whining, moaning, twinging, irritable, angry, tremoring, frustrated, spasming, urinating-challenged, weak-bodied, weak-spirited, weak-minded disabled woman with a moody disease that entered my life two months ago, and as its name suggest, thrashed what I knew to be my way of living into disembodied fractions.

But as I discussed with my brother on the phone tonight, sometimes life just sucks, and right now it sucks--and not just for me. Yet as I am in a somewhat deservedly self-involved state, I'm not even going to acknowledge the various levels of suckiness of so many other people's lives.

Other than the inanely funny jokes I can' remember and one of the most mutually honest and sincere talks I've ever had with my brother, this is the most important part of the conversation:

Even when life sucks, we (I) can still be a frickin' fantastic person. Maybe not in all our usual glorious ways, but there must still be 2 or 3 totally self-centered traits, thoughts, or actions that can make us say to ourselves, "Life sucks, but I still rock."

So, even if no one agrees with me on the following points....

My life sucks, but I still rock because:
  1. Even though I haven't been allowed to bathe for two days, I don't stink and my hair looks just-got-laid sexy.
  2. I stiffed the idiot cab driver who tried to rip me off.
  3. I care enough abut my job, my lifestyle, and my future to cry because I'm direly afraid of losing it.

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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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