- I'm in the midst of a full-body RSD aka CRPS flare-up
- I have gained 21 pounds of pure swelling and cannot use my left hand or be touched anywhere from the waist up.
- I have several extra faces for sale, but they are very expensive.
- Aetna denied my doctor's orders for a 5-6-day hospital stay.
- I'll be starting a trippy, 10-day regimen of out-patient IV Ketamine once all the psych and cardiology clearances come through
- I was hospitalized for 9 days in February for an MS exacerbation
- I had a surgery to implant a fistula (see video in 2.11.10 post) that, once matured, will replace the death trap permacath attached to my sternum and last working jugular vein
- I've started a new art series for Mother's Day gifts
- I am doing the MS Walk on May 2 at the Art Museum in Philly....hopefully by cane or by wheels to the finish line
- Our team, Mel's Neuro Detour, is accepting new team members to walk with us, so JOIN NOW!!!!!
- We are also graciously accepting donations to the team or to individual team members (like me)
- I have already raised double my goal...which means I will be tripling it, and our team has reached our original goal of $2008 (the year I became a neuro-sicko), so I'll be raising that number too. We only have 11 days left, so keep the funds a-comin'
- If you plan to join the team, we are each purchasing our own $20 Mel's Neuro Detour/F**K neuro disorder T-shirt, artfully designed by team member Kathryn Babson, who is making the long journey from Wilmington, North Carolina for the walk. If you haven't sent your T-shirt size to Kathy, please do it today before it's too late.
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.
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.
4.22.2010
Quick, painful, artful, philanthropical, update..
It's been a while...again. And I'm more than under the weather, so I'm going to make this update as efficient and succinct as this verbose neuro girl can muster.
3 comments:
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
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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."
Mel, It's been tooooo long, in fact I have your last email to me still sitting in my inbox, ready to be answered. Oh well....
ReplyDeleteI am so sorry that you've been struggling as you have been. I promise that I'll email you [maybe] tomorrow. :)
Doug
Hey gorgeous,
ReplyDeleteI got extra T-shirts :) So there should be PuhLenT (plenty). Also, since you are swollen from the waist up, I'm assuming this means you still are the prized owner of the hottest ass ever viewed, and so... I've orderer you a size Youth Medium shirt and a Melanie Kicks A$$ matching thong to wear in the race. :) Please dear, lead the way for us. :D
Love you chica and I can't wait to see all your expensive faces!
<3 Kathryn Babson
Melanie, I am sorry to hear that you are having such a difficult time. I have my fingers crossed that you will be feeling better soon. The swelling sounds awful.
ReplyDelete