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.


Just Another TM Monday...Ohhhwayo

This Mel update may be terribly boring for some, voyeuristically curious for others, or just an appreciated update of what is actually going on in my life for family & friends.

Any way, let me introduce to you:

Just Another TM Monday: 24 hours of a mostly typical Mel-day in annoyingly elaborate detail and occasionally missing moments that may have been forgotten or ommitted due to short-term memory, writer's license, or I was just too damn tired and lazy

AUTHOR's NOTE: This post is based on last Monday, but due to the ever-pressing responsibilities of work, plasmapharesis, and trying to be fabulous despite my TM, I didn't finish it until Thursday. And posting a Monday post on Thursday was just too anti-climactic, even for a person with a disease that removes that word, in most of its meaning, from their life.

12:00AM - 1:00AM
  • Feelin' down, tired but abnormally frisky - like I've slept all day and I want to get out of the house and see the world and feel pretty kind of frisky.
  • Attend Koresh Dance Company after party at Time with friend-professor-artist-ex-boyfriend Mat, despite wanting NOTHING to do with dance world.
  • Enter - armed in my new Sorel snow boots, other winterly accouterments, and punk rock cane.
  • See ex-husband for 1st time in 1 year. Flinch. Nod. Smile.
  • Neuro-walk toward him; long-story short: he learned the day before of my TM.
  • We reconcile. "Life is too short."
  • Hold back tears while drinking screwdriver bought by ex-husband.
  • Cane-"dance" to ex-husband's music, much of which is also on my Ipod. (He was the DJ)
  • Prevail 3 minutes on two feet.
  • Attempt seated chair dancing. (I have obviously lost any sense of pride.)
  • Sustain 1 minute.
  • Return to Screwdriver at bar.
  • Reciprocal flirt (just a teensy subtle bit) with secretly unavailable man I have no interest in.
  • Calm friends and strangers as they react to my bloody, mutilated sternum.
  • Meet unavailable man's wife - stupid drunk, stupid happy, stupid cute.
  • Cab ride home.
  • Take night meds.
  • Crash on couch to ubiquitous Law & Order playing on my new 32" flat screen.
  • Wake up hungry. Hadn't eaten since noon Sunday.
  • Shovel down 1/3 of what's leftover of 5-day old Thai leftovers and hope for best while watching info-mercial. Any result could be a positive. Maybe I'll actually go to the bathroom!
  • Sleep in bed. Cuddle with cats.
  • Wake up. Why?!
  • Awake & doleful - in various kinds of full-body neruo & post-surgical pain.
  • Attempt work on copy doc with ensuing deadline.
  • Suffocate on self-inflicted stress and double vision.
  • Sleep more.
  • Daily alarm off. Uggh. Snooze. Uggh. Snooze. Up. (Note: "Up" in TM world is more of strategic slow-mo side roll, peel/push torso to sitting.)
  • Lift self out of bed with support of cane.
  • Neuropathy already overwhelming focus.
  • Make coffee.
  • Feeling relieved about reconciliation with ex, but agitated by pain.
  • Feeling irritated by pain and fact that I "kind of" got "stood up" Saturday night. What man wouldn't at least want to take the opportunity to be sitting distance from a woman with four boobs and 5 nipples! A dream come true!
  • Agitation and irritation turning to frustration and anger.
  • Refocus - "remember Dr. Schwartzman's orders: none of this is good for TM."
  • Listen to Ganesh meditation online.
  • Lose focus and switch to another Web site before completion where I can spend money I don't have .
  • Imagine myself not spending money. Yuck.
  • Imagine myself meditating.
  • Imagine alter, props. See dollar signs.
  • Question: clothes, furniture, co-pays, job security, meditation? hmmmm.
  • Priorities? Confused. Conflicted.
  • Try to work on copy doc. Failure.
  • Yikes. Have to be at Hahnemann for plasmapharesis treatment in 2o min.
  • Wipe last night's stink off with bath wipe, e.g., "whore's bath."
  • Skip face, smudge mascara under-eye lids into cats eyes. Wow. It works.
  • Dress.
  • Pack bag.
  • Grab slice of bread and down orange juice. (I skimped on the pre-pharesis meal requirement; figured my late night "binge" counted for something.)
  • Super-woman hobble to elevator.
  • Wait for an f'ing cab. Is everyone afraid they'll be blown over by the wind in this city too?
  • Put rest of bread in pocket. If I'm not making this appointment, I'm not forcing myself to eat.
  • J.J., best doorman in philly, finally triumphs over the cab battle.
  • Can't push front building door open against the wind. I am weaker than usual.
  • Call plasmapharesis for 2nd time letting them know I'm on my way - strict 15 min. grace policy means no pp for Mel today.
  • All is cool. Someone else's cancellation saves the plasmapharesis day. Pull bread crumbs out of pocket. Eat.
  • Plasmapharesis.
  • Hurts to feel bed against my skin.
  • Fall asleep watching my blood swim out of my body, and wishing my final appeal against Aetna, which at this date is not looking good per my pro bono attorney Jennifer Jaff, comes through. When last appeal is over, I must write about more Jennifer and this case.
  • Sleep through most of treatment, except when they wake me for calcium supplements. Lisa gives me the flavors I like - strawberry first, then orange.
  • Take morning meds. (Plasmapharesis would have just heaved them out of my system).
  • Rheumatologist appt. with Dr. Huppert, nicest Rheumie in Philadelphia.
  • In and out of sleep in waiting room. He offers to take my coat and hang it for me. He's running 1 hour behind. Acceptable, considering how nice he is. Not acceptable considering I MUST get back to work (from home).
  • Cortizone injection in left hip. This one hurts.
  • Last injection in posterior hip still working.
  • Doc: "See me in 2-4 weeks. Let's get an MRI of that hip."
  • Me (in my head in 1 seconds time): "Great - more tests, more visits to Hahnemann, more time out of the office. ATAVAN?!"
  • Me (out loud): "Thanks. Goodbye. Gotta go. Bye...Bye..."
  • Home. What a frickin' mess.
  • Get online. IM boss, "Honey, I'm home! And I'm working!" Really. I am.
  • Take afternoon meds.
  • Life Alert guy supposed to show up to install equipment. No show. No call. Or I just haven't figured out how to check my home phone voice mail.
  • Kris from IG Living calls to check in. We chat about my case against Aetna, test results, and her two very inspiring boys who have autoimmune. I could talk to her for hours. I must write more about her another time. "Kris, I'd love to chat more, but I have to go. I have a 2PM work conference call.
2:05PM - 3:30PM
  • Home phone rings. Work conference call for major deadline. Exchange pleasantries. Everyone's sick - with cold.
  • Momentary feeling of superiority matched with typical Mel compassion: A. ) Have they ever heard me complain about my sickness at work? Don't think so. (But probably) B.) It sucks being sick and having to work. Hell, it just sucks being sick "period."
  • Cell phone rings. Mute other phone. It's Jennifer...sounding concerned. Gotta go. Call you back in 90 min.
  • Cognitive problems at extreme today; having trouble articulating my answers to bosses questions.
  • Feel like a moron.
  • Explain. Apologize. Repeat.
  • Account Exec asks how many product pages I've finished writing.
  • I lie. 50%.
  • Additional changes to copy clarified - kind of.
  • 3PMish: Get disconnected. Meeting still going.
  • Call to get back on; IM co-workers to let them know I'm off call.
  • No one calls me back.
  • Self-doubt. Is my disease making me less important?
  • Wait for on copy doc. Need to get to 50% by tomorrow AM.
  • Wait for on copy doc.
  • Wait for call.
  • Give up. Move on.
  • Call Jennifer. She's more animated than normal. Case against Aetna is looking hopeless, and this is our last chance. None of my docs keep good records. Expense of getting records rising. Gives me to do list. Put to do list in my Entourage.
  • Get back to work.
  • Overwhelmed. Exhausted from treatment. Ghosts of The Drake continue to poke, pinch, punch, squeeze my body head to toe.
  • Call mom on cell. No answer. At work. No answer.
  • Lie down on couch. It hugs me. Fall asleep.
  • Wake up. Pain lessened.
  • Call mom. We split Jennifer's to do list. Overextended, overwhelmed feeling lessened.
7:35PM - 1:47AM
  • Write, write, write, write.
  • First time since Sept that I feel remotely lucid. Clarity is energizing.
  • Take short break to call friend John. Wanted to call him earlier, but who wants to talk to a depressed, tired, miserable Melanie? Not me.
  • Take evening meds.
  • Nearly make it to 50% of product pages, and some damn good commercial writing too. Good enough.
  • Email copy doc to self.
  • Take bedtime meds.
OK...time's up.


  1. hi mel,

    just to change the mood. do u know why i call it disorder and not disease? because: neither the diagnosis is known (in the majority of cases of TM) nor the prognosis is known, as you said. at least a disease is well defined! also, by saying disorder, we hope it will turn to its normal order! one more thing, supporting the argument, the abnormal sensation we feel tells us that there is some disorder in our spinal cord not allowing the signals to travel properly.
    anyway, am i faking it? are we faking it? who knows? nobody, since it is a rare disease no one can tell us how to deal with it, so fake it till you make it! ;)
    bye for now
    cheer up

  2. Dear Mel--
    Your writing is incredible--your spirit is beyond inspirational.
    2008 was such a strange year for so many reasons...[not all bad.] Let's all start the New Year with your amazing resolve to make 2009 so very healthy and happy...and, yes, in that order.
    Lots of Love,
    Aunt Arlene


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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

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