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


Why Insurance Companies (Aetna) are More Corrupt than the Mafia...a non-academic crime story

I'm sure I could research hundreds of compelling facts and figures, swim through my long-term memory, skip the cracks of what's left of my short-term memory, strike up a conversation with one of the 1 in some census knows what too small number of uninsured people walking by (thankfully, not inside my apartment at 1:51AM), or make a few journalistic phone calls (also not at this hour, which is now 1:55AM) to back up the title of this entry. But I'm just gonna tell one true story worthy of any journalistic integrity award using my own experience.

And by the way, even though this is a crime story, and it is tempting, I'm not going to get into any further discussion of the mafia - Italian, Jewish, Vietnamese, Russian, or otherwise.

This is all about Aetna.

Catch Up
If you've been keeping up with my transverse myelitis (TM) progress notes through this blog, Facebook, or other more personal means, you may already know that despite my three+ weeks of hospital stays for treatment (IV Solumedrol, plasmapharesis, and IVIg), I have had good, bad, not-so-good, not-so-bad, and this-f*cking-sucks days--all of which are to be expected for TM sufferers or recovers (choose your own glass).

Post-treatment Love Story
After my last hospital stay, which ended 10/28, hackneyed hope gently reentered my spectrum as I started to feel stronger. I could almost open doors without grunting, my myoclonic spasms seemed to be getting a little shyer, my tremors less tremor-y, and my pee even once made its debut less than 15 minutes fashionably late from the time I took my seat. Hooray! Bravo! Encore!

Was it the treatment? Was it the meds? Who cares! I could pee! One day, I felt so "strong," I thought I could walk without my cane.

But then the falling started, and the spasms increased, and the neuropathy returned, and all the other symptoms that remained or showed up at my doorstep continued to increase their passion for being with me. (If I had any sex drive, I'm sure I'd be able to rock their world right back...sorry mom/bro.)

I'm over the bad romance novel metaphor too, and I'm meandering from my point, so I'm going to expedite it now in list form:

The Insurance Corruption Timeline

  • Release from 2nd hospital stay for first round of treatments of plasmapharesis and IVIg
  • NOTE: Aside from meds (mainly a stew of narcotics and steroids), the treatments I have received over both hospital stays, are the ONLY THREE treatments for people with TM.

  • Catch up on mail; organize medical docs.
  • Continue to receive multiple "THIS IS NOT A BILL" letters from Aetna indicating payment denied(to the hospital) for all plasmapharesis and IVIg treatments.
  • NOTE: Received first of these while in hospital. Hospital caseworker explained denials will be appealed, but either way will not be my responsibility--financially, legally, or another lost minute of managing my third job: being sick.

  • Pre-treatment symptoms begin worsening.
  • Begin falling.
  • Other new symptoms arise and continue to increase.

  • Call Dr. Schwartzman.
  • He decides to start home IVIg treatment ASAP.
  • Chooses Tuesday 11/18 (following insurance requests, referrals, scheduling, etc.).
  • I request Wednesday because of major client meeting on Tuesday.

  • Aetna denies IVIg treatment (but not the surgery...hmmm).
  • Dr. S's office schedules appeal (peer-to-peer review) of coverage denial with Aetna.
  • Assumption: Treatment will be approved.
  • Plan: go forward with surgery so we're prepared.

  • Portacath implant surgery at Hahnemann with Dr. Pavlitis. (my 2nd port implant surgery since 10/15).
  • Hoping appeal is approved and treatment can start today.
  • Aetna caseworker assigned to appeal (she is my advocate not Aetna's), suggests I could get a call that treatment could start as early as next day.

  • Return to work - in post-op pain and not on pain meds so I can function.
  • (Sidebar: Being sick in this economy does not provide the luxury of basking in one's own pain.)
  • Waiting for call to leave to start IVIg.
  • No response from Aetna on appeal. No treatment today.

  • Bandages off. My once dancerly perfect sternum disfigured and no hope for treatment soon.
  • 3:45PM: Caseworker calls. Appeal denied by Aetna.
  • Next step: Appeal the 2nd denied appeal.
  • Call Dr. S's office for direction. Appeals person is out until Monday.


  • Symptoms continue worsening at faster pace.
  • Fall four times. Once hitting head on toilet seat.
  • Seeing double, etc., etc., etc.


  • 3:50PM: Receive direction from Dr. S's office.
  • 3:55PM: I leave voicemail to file 2nd appeal with Aetna. Message says they check voicemail every 2 hours.
  • Emotional breakdown. Go to Creative Lounge and sob...and sob...and sob.
  • 4:35PM Aetna's calls: I file appeal. Told their response takes up to 15 days. If denied, one more appeal available to me.
  • I leave message for Dr. S: How to manage the pain, falling until treatment is approved.
  • 6PM Dr. S calls: Can't wait that long for appeal process.
  • Must begin 2nd round of plasmapharesis (much more invasive than IVIg) this week as outpatient.
  • I'm still in pain from port implant surgery. Entire body hurts from TM.

Forthcoming tentative schedule:

  • Surgery to remove portacath implant and replace with permacath implant
  • Begin outpatient plasmapharesis (5 days, approx every other day)
  • Continue to wait for word from Aetna on IVIg approval
Unknown Date
  • Once/if IVIg is approved, 4th surgical port implant prior to IVIg treatment

If There are Only Three Successive Treatments Available for a Rare Disease, How Can an Insurance Company Consider any of them to be Experimental, and therefore Deniable?
The only treatment that Aetna will pay out for TM is steroid treatment. IV steroids are just the first step in treatment for many patients with TM.

Firstly, because like with me, it may have no positive effect on the disease. Secondly, it doesn't have enough of an effect for the patient to regain as much function as possible.

So, because Aetna considers two out of three of the treatments for TM to be experimental and therefore not cover-able, I, and other patients like me, will have/had:
  • 2 unnecessary surgeries
  • 2 consecutive weeks of unnecessary post-operative surgery pain
  • 1.5 weeks of continually worsening symptoms, including multiple falls
  • A 2nd round of plasmapharesis (an invasive and exhausting treatment), during which time all of my blood will be removed from my body and replaced over a period of 5 treatments every other day: 66% of my blood will be removed during each session, plasma separated from blood, and replaced with albumin (you can see pics of my first round of plasmapharesis)
  • 6 additional outpatient days in the hospital
  • 6 separate days of hospital registering and waiting for patient transport
  • 6 days where I will be forced to work from home (possibly putting my job in jeopardy? or at least making co-workers' jobs more difficult)
  • 2 weeks of being at high-risk of port infection (the permacaths have high risk of infection and are rarely used in outpatient treatment for that reason)
  • 2 weeks of 30 minute prep if I want to take a 1/2 shower (the permacath cannot get wet; NOTE: I will be posting video of the shower process soon. In the mean time you can view these pics here. Some of them contain nudity.)
  • Emotional stress of not knowing
While I am incredibly grateful that I have insurance, I am infuriated by the bureaucracy, the random coverage decisions, the pedantic pace, and the ongoing corruption of so-called nonprofit companies that are making billions in profits without having to account for the actual well-being of the individuals they are supposedly there to help.

The Irony
Aetna positions itself with a definitive mission:

"We're dedicated to helping you stay well - in every way. See the difference Aetna can make for you."

This is the very same company that withholds access to the treatments that so many sick people need not only to "stay well" but to function or even to stay alive.


Thanks Pharma, Biotech, and the Holy Spirit for Percoset

I'm tired. Really, really tired.

Not just because it's 1:57AM, I took an Oxycodone (generic for Percoset) 2 hours ago, I woke up at 6AM to meet a 1:30 work (extended) deadline...that I 4 minutes, I cried for three hours home and in public...for rational and irrational reasons, I spent my day in post-operative pain, I spent my evening in transverse myelitis full-body pain, I've been waiting three days for my next IV Ig treatment that Aetna insurance has denied twice in one week, I had to rush to the surgeon's office because another doctor told me my port looked infected, I'm mentally preparing to move tomorrow, I have $9 in my only bank account, I got out of a taxi mid-traffic at S Broad & S Penn Square and walked the rest of the way home because he pissed me off for being an idiot, or because I'm a whining, moaning, twinging, irritable, angry, tremoring, frustrated, spasming, urinating-challenged, weak-bodied, weak-spirited, weak-minded disabled woman with a moody disease that entered my life two months ago, and as its name suggest, thrashed what I knew to be my way of living into disembodied fractions.

But as I discussed with my brother on the phone tonight, sometimes life just sucks, and right now it sucks--and not just for me. Yet as I am in a somewhat deservedly self-involved state, I'm not even going to acknowledge the various levels of suckiness of so many other people's lives.

Other than the inanely funny jokes I can' remember and one of the most mutually honest and sincere talks I've ever had with my brother, this is the most important part of the conversation:

Even when life sucks, we (I) can still be a frickin' fantastic person. Maybe not in all our usual glorious ways, but there must still be 2 or 3 totally self-centered traits, thoughts, or actions that can make us say to ourselves, "Life sucks, but I still rock."

So, even if no one agrees with me on the following points....

My life sucks, but I still rock because:
  1. Even though I haven't been allowed to bathe for two days, I don't stink and my hair looks just-got-laid sexy.
  2. I stiffed the idiot cab driver who tried to rip me off.
  3. I care enough abut my job, my lifestyle, and my future to cry because I'm direly afraid of losing it.


Off for a Hospital Quicky

It's 5:14 AM. I want coffee. I want water...very cold water. I want cigarettes.

I should be...
taking a (lukewarm) shower, brushing my teeth, and applying just enough makeup to feel attractive. I should be getting ready to be outside my building in 25 minutes to catch a cab to Hahnemann Hospital--for my second port surgery this month (the first was a perma cath, this is for some kind of portacath).

I'm anticipating...
the cute, but clearly married nurse, will be waiting to prep me for
surgery. Or, Sharon, the nice forty-something nurse who calmed me pre-surgery last time when the idea of all this loss of self-identity overwhelmed me in a fluorescent room full of strangers waiting or recovering from more serious surgeries.

I'm wishing...
they won't make the same mistake twice (what a hospital staff person make a mistake twice--never!) and give me ketamine (yes to the horse tranquilizer, no to the Special K) for my anaesthesia. I'm hoping I don't wake from surgery in violent, lawless, yet strangely conscientious hysterics.

I'm wondering...
if they'll give me a script for good pain pills. And, how many men over the next year will stare at my chest (I assume that's where they're putting it--no one has told me anything) and not notice I have breasts beneath my pot?

It's 5:30AM now. I have 15 minutes to get out the door. There's nothing worse than a tardy sick person.

I am stating the obvious by saying I'm procrastinating, but this is not because I'm scared, or because I'm about to go to the hospital. This is because I'd rather be writing, dancing in elevators, and working than being sick.

Portacath Photo Credit:
Portacath from Wikipedia,
originally uploaded by penmachine.

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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