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.


My Life Sucks But I Rock...Because There Are So Many Things I Can Be Thankful For

A Holiday Inspired Post

This is the 2nd installment of a new series inspired by my brother (see
the inaugural descriptive post). Considering the season, despite the false pretenses under which we celebrate, and since I slept through Thanksgiving dinner (I was physically and emotionally exhausted from my first trip since getting transverse myelitis (TM)), I felt it appropriate to make the first official "My Life Sucks But I Rock"-dedicated post centered around thankfulness.

Although this is a numbered list, it DOES NOT represent any particular hierarchy. Think: poetic license.

Things that I am Most Thankful for Today

  1. Couches that hug
  2. Sleep: because forgetting is not a medical side effect
  3. My Mother: because there are too many reasons to list here
  4. Klonipin, Tramadol, Gabapentin, and Oxycodone
  5. My Brother: because he is teeming with surprises and could make a man hanging off a ledge of an 80 story building laugh
  6. Kindness: because it creates warmth beyond its own vicinity
  7. Frozen dinners and elevators
  8. My Aunt Marci: because she is full of contradictions, divine, will always be there in person when you need her, and drinks as much if not more wine than I do
  9. Airplanes
  10. Family: because I believe in some way I can count on them, even if I can't
  11. Friends who call every day even tho they know the phone sometimes annoys me and I won't answer or talk long. But they really know their calls make me feel safe, loved, inspired, and less alone
  12. Men that hit on me
  13. Ex-boyfriends who become friends
  14. My job
  15. My supervisor, Steve Dimeo: because he is kind, ab fab hilarious, can do accents, sings karaoke, is on my side, and will hopefully fall madly and mutually in love with one of my best friends, bringing her to Philadelphia to live near me forever and ever
  16. Low-cut, v-neck tank tops and cardigans...because everything that touches my portacath feels like anger
  17. People who offer assistance because they know I am too embarrassed or proud (still need to figure that one out with my therapist) to ask for it
  18. People who don't handle me like a helpless gimp...especially in public
  19. The Internet
  20. Dr. Schwartman: because he does everything he can to heal me while fighting the system that's denying treatment. And because he swears "we'll get you better and married."
  21. Soft robes and pink slippers
  22. Children: because their love is unhindered
  23. Hope, even when it is a child playing hide and go seek
  24. Magee Rehabilitation: a place that gives me hope
  25. The realization that healers come in all types, professions, and visual representations
  26. Hypnotists...I WILL quite smoking this month
  27. Social networking sites: because you can find a mutually-rare-experience-virtual-and/or-in-person home of support
  28. Spell check
  29. The chance opportunity to see my ex-husband's three children and tell them I still care about them and always will
  30. Gifts
  31. December 17 - the date I go to The Transverse Myelitis Center at Johns Hopkins in Baltimore for my appointment with Dr. Pardo-Villamizar
  32. Enlightenment - even when it lives in will rain eventually
  33. Knowing that Judy has left for Germany where she is about to go into a 2-week ketamine coma that could liberate her from RSD
  34. Cute tennies - with or without platform heels
  35. Irony
  36. Everyone who moved all of my belonging up 9 stories into my new apartment while I watched and felt sorry for myself for being helpless
  37. Friends who don't get too terribly annoyed when I feel sorry for myself
  38. Soothing touch...even if its only from my mother for now
  39. Sephora product samples
  40. Sana at/& Joan Shepp: because I get retail therapy, friendship, and clothes that make me look so much better than I feel
  41. Butt-lifting, thigh-flattering, tight jeans (I will always be thankful for this)
  42. Delivery
  43. Tall boots with zippers
  44. Small gatherings with good friends and good wine
  45. My new 32" flat screen TV
  46. Smiles
  47. The fact that it could be so much worse

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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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