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.


The Good, The Bad, and The F------ng Sucks

Disclaimer: Poetics and pretty phrases are not on my top list of priorities this morning. Some of you may have remembered my "typo" in the last update. I stared at that word ("aloud") for minutes and new it wasn't right, but the synapses just weren't firing enough to make the connection. Expect more of those today. My editor has been arrested for protesting McCain's liberal subject/object mis-swapping of me/I.

Writing my first Mel-has-Transverse Myelitis-Update-to-Friends-and-Family last week had therapeutic effects. On Tuesday, I was almost strong enough, neurologically lucid enough, and pain-free enough to walk without my cane.

Shoulda, woulda, coulda...followed up with another update sooner.

The Good Day-Bay Day Blues
The drawback of a "good day" is that the next "bad day" or even "not-so-good-as-yesterday's-kind-of-good-day" bears, not only, the misfortune of corporeal crap but it also launches an emotional spar against hope. In other words, It's been a rough week and I feel like shit to the bone, or I guess in my case "spinal column" would be more appropriate. So, please forgive any undertones of doom and destruction, and indulge my use of profanity. Swearing--like red wine, yoga, oatmeal baths, ambien, the sun, the Sunday times, and tall-dark-handsomes in tight jeans--has healing qualities.

Since Good Tuesday, the days have rolled into Not So Good Wednesday to This F*ing Sucks Friday. My transverse myelitis (TM) has become a recalcitrant puppy, sans cute mucous eyes and dog breath kisses. No, my TM is not house trained either.

I know...enough with the dog metaphor, get to the point Melanie. (Addressing myself in the 3rd person is not a registered side effect of TM.)

The Deal
The steroid treatment is not working. My old symptoms are getting worse and my new symptoms are getting stranger. This includes:
  • increased difficulty walking and speaking
  • occasional partial paralysis
  • blurry vision
  • worsening short-term memory
  • bladder problems
  • spasticity
  • tremors
  • parathesis (numbness)
  • no appetite
  • pain
Dr. Schwartzmann, my affable neurologist, has upped my pain meds and is readmitting me to the hospital. On Tuesday, I start plasmapharesis (a total plasma transfusion) and IV Ig (immunoglobulosomething-or-other for the immune system). The goal, as I understand it, is to give me all new antibodies that will not attack my immune system, enabling the recovery process to begin.

I'll be in the hospital for up to 2 weeks, and then I believe it's a week of bed rest.

Mom is flying in this Thursday-Monday. And, because my aunt Marci has pined for loquacious Leo's (my jr. cat) early morning face rubs since her last visit, she'll come (hopefully with contraband and sexy pajamas so I can seduce a cute doctor while rockin' a buzz) the following Thursday and stay until I'm released. She's also promised not to bring the movie, Beaches. Phew.

The Moderately Forced Optimism
I can't say it enough. I have an AMAZING family (well, at least the Wander side - excluding you cousin-Amanda-from-the-Miller-side of course!) 11.21.08 Amendment: I have since reconnected with many of the Miller cousins. Lisa, Mark, Shelly, you’re in here too. I have a feeling this long lost Miller list may grow, but if it doesn’t I’m cool with that too.

AND amazing friends:
I've reached out to my local posse to visit me in the hospital and act as advocates (you need one) on my behalf during the days my family can't be there with me. My hair looks amazing, thanks to my girlfriend and co-Drake-tenant, Tamar. And my toes and fingers are gonna be bangin' too after my mani/pedi this afternoon with Hollis.

Marni is always calling from the 'burgh to translate the Latin lexicon of my day to day into tangible terms. I reconnected with my dear friend and former collaborator, Frank, who unfortunately, through his 5+ year battle with Parkinson's, understands what I'm going through. And there has been so much positive energy sent my way from my peeps locally and beyond.

AND amazing employers and coworkers:
My city-dwelling coworkers, including Boss-man and friend Stevie D, John F and Jon E, have been providing door-to-door mel-portation on the two days a week I go into the office. The boys (I am a gender minority) at work are generous with the gimp jokes and that keeps me laughing. The president has pledged her support, made it clear that my job is safe and that I should be focusing on my health, and is arranging for me to get a wireless air port so that I can continue to work while in the hospital.

AND strangers:
There have been many, but here's just one anecdote for today's newsletter. Yesterday, just moments after I received THE BEST HAIRCUT EVER from Aja, I had the fortuitous timing of gimping by Bluemercury, a high-end cosmetics store on Walnut Street, while they were offering free Laura Mercier makeovers. And, even though I didn't have an appointment, they invited me in--I think because I looked so neuro-chic (definition: a cutting-edge-fashion combo of waif body, puff face, punk cane, emphasized by a highly stylized manner of walking and speaking).

Dr. Schwartzmann called to check in just a few minutes into my facial transformation. I started crying--luckily before they did my eyes--when Dr. S gave his verdict. And Amanda, who was prepping my skin to receive the makeup (envision pewter lids and lips glace), gave me the most sincere hug before she continued combating my 'roid-skin. In the end, I felt all kinds of beautiful. Amanda offered to visit me in the hospital. I accepted.

OK, glad we're done with this amazing crap.

The Conclusion
This update has taken on more for me than keeping the people who I care about and who care about me informed. Writing about this makes it feel less huge.

Let's hope they give me Ativan again.


A Personal PS
Thanks to my everyone for your calls and emails. If you want to get in touch or visit while I'm in the hospital, my cell phone does work there and you can find me on the neurology floor. Please understand if I'm slow to respond to your messages, it's not because I think you're voting for McCain, don't have a pleasant phone voice, or have been driven into an irrational 'roid rage campaign against you. Well, you get 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.
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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