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. Yeah...life sucks, but I still rock.



12.02.2008

...And After


Even though I was in no mood for surgery today; really, there are some days that I don't mind a little or a lot of poking and prodding, everything turned out fine, and I got to see my OR nurse friend Sharon again. Good people spread good vibes.

No one --from the procedural admissions staff to the patient transporters to the OR staff - could believe the reason for my quick surgical return (See: Why Insurance Companies (Aetna) are More Corrupt than the Mafia...a non-academic crime story).

My super kind Aunt Marci flew in from Montreal and met me after on the 9th floor after the surgery. I cajoled her to drag our legs a couple of blocks to a better taxi-flagging location. Even after being sliced open, I need efficiency.

I'm tired and drugged, so I'll keep this short and just share a couple aftermath photos with you. Feel free to laugh - my sternum might be eligible for a sideshow gig.

PS Plasmapharesis starts tomorrow. Yippee! They'll be using the port with the udders attached.

2 comments:

  1. hi melanie,

    now you have these tubes attached in you, you watch your body movements very carefully...
    now we laugh, i call this: irony of life. we laugh because we are beyond the norms of misleading agony...
    me, too. i will be short in my comment. i wish you the best in the plasma, for me i used to read whilst the machine engines roaring besides my head, just see the blood passing through the catheters cycling to the machine to filter my plasma...
    hehe :) keep smiling

    ReplyDelete
  2. Yeah, it's me... the old POD... I'm just flowing with optimism - "Most patients will have only one episode of transverse myelitis; a small percentage may have a recurrence." - how's that for the glass is half full?

    Now that I'm in the loop, and subscribing to your blog, what's with the third trip? Is this still considered "one episode." Yeah, sorry Mel, just full of questions...

    You know, I've seen you smile before... remember when we went to see that performance thing in Boulder, two for one... that was a hot date! I felt like my hair had the "just been laid" look... sorry, stole that from your blog... what's really amazing to me, and I just read your whole blog, or at least I think I did... (6 posts)... your English skills are still amazing... they must not be giving you enough drugs...

    So... with the roids, has your voice gotten deeper?

    Next time you said we would talk about me, so just to give you an inkling of what's to come... I've been gaining weight, I feel like crap all the time, not quite Black Hole Transverse Myelitis Crap, but close... losing my vision, diagnosed with sleep apnea, and got some crazy thing going on with the plumbing that no doctor can figure out (yes, both hot and cold plumbing, as well as warm). And on top of this, I don't look as good as you do after your treatment. Damn!

    Talk to you soon and hang in there!

    ReplyDelete

Thanks for sharing your comments on my blog. Please stop back soon or subscribe by clicking http://feeds.feedburner.com/NeuroDetour.

If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (http://www.facebook.com/inbox/?ref=mb#/group.php?gid=44446668472), 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.

Best,
Melanie

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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