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.


IVIg is On...

Disclaimer: The author is too tired to spell-check, proofread, or use big words.

Just a very quick update to let you know that I started IVIg home treatment today (Thurs).

Even though, the treatment set my winter hibernation into motion (I slept ALL day), I'm still too exhausted to write anything interesting or to ramble on about the ongoing ineptitude and corruption of the medical I won't.

OK. I can't help myself...
Four over-nighted boxes arrived this AM with all supplies, including the IVIg, which needs to be refrigerated, and lots of other med junk that apparently I'm financially responsible for once FedEx says goodbye.

How does Aetna expect a physically-visually-among-other-things-challenged person to maneuver these precious boxes (which currently overtake my 475 square foot apartment and refrigerator), open them, and figure out what needs refrigeration and what doesn't? It may be perfectly clear, but when you're told you'll be charged tens of thousands of dollars, the obvious answer isn't thorough enough.

Luckily, I had Day 1 Help from a friend, so I didn't have to worry. But really? Come on? Imagine all the other sickly loners like me, who didn't receive a gracious offer like me.

The facts and only the facts
  • IVIg treatment will continue for 4 more consecutive days (Thurs - Mon).
  • I was told that each infusion lasts about 3-4 hours, but I'm not sure because I was sleeping when the nurse left.
  • Day 1 nurse is also responsible for organizing all the parts and props and ordering what's absent...luckily the only missing prop was the waist carrier for the bag and monitor, i.e., Day 1 is more like 4-6 hours...I think.
  • My script is for 1 year of 5-day infusion treatment every 4 weeks.
  • No alcohol allowed. (I'm holding my fingers from adding any personal response.)
  • Today's infusion nurse wouldn't allow any pics or videos, so you've been spared seeing my port accessed.
  • I'm realizing why I let go of my "just because I feel like shit on the inside doesn't mean I have to look like shit on the outside mantra" during my first (and much more intense) round of IVIg in hospital. Besides the fact that I can't take a shower or bath (new pics to come...when I an cull enough energy to hit "click") while my port is accessed, I can't imagine having the stamina or inclination to be bothered.
  • I'm going back to sleep now with a minor headache and all the other TM crap, i.e., no improvement yet, but that would be 1 in a million (NOTE: made up statistic).

1 comment:

  1. Melanie,
    I sure hope this treatment helps are going through hell.
    Wishing you the best...


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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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