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.


IVIg is On...& In My Main Vein: A Monthlyish Update

Maybe the recent increase of series-posts means that I'm thinking more "big picture." It could be timing - that my Transverse Myelitis (TM) and its multifaceted challenges have developed enough abyssal momentum to warrant a deeper look. Or, could it be that 4 months into my diagnosis and 5 months past my first symptom, TM is no longer as discomforting as a terribly matched accessory, but more like Rockports, an ugly but integral component of one's wardrobe (surely not mine; no offense to the Rockport wearers (my father was a dedicated Rockporter) but I turned left onto the Puma, Steve Madden Fix tennies, and knee-length ankle-supporting boots purchased from local, individually-owned businesses Head Start Shoes and Joan Shepp where everyone knows your name (and you can shop from their stellar collections online) on the fashion road)?

I honestly don't know. But I do know (and own) those funky-comfy-velcro-buckling-neuro-friendly black boots pictured above, and I gladly laud them. (They're on sale for $49 right now. Be sure to tell them Melanie sent you.)

I'm still not seeing any pictures - big and certainly not small - clearly, but I'm hoping this new leaning towards the big and the long-term is a positive sign that I'm not so overwhelmed by my shitty new life that I'm occasionally thinking "future", or that I'm just thinking period. Or, if I examine my past-life as a choreographer and dancer, which 9 times out of 10 involved (dare I say) ambitious, ongoing or long-term performance, residency, and community projects, means I'm coming back into myself.

I'd also like to believe that this lean, is a subconsciously mind-brimming synonym for incline, i.e., a sign from the Transverse Myelitis gods that I'm due to be wearing high heels again soon (the fruition of the magic wonders of IVIg?). Ohhhh, to feel my toes squished into a pointy, little toe-hand with a mighty grip, to hear the click-clack-clank-clank of my own walk (epiphany, high heels want to be heard!...and so do I), to make the necessary pelvic swivel offering to the line-embellishing, lusty fellows that kiss my feet better than any lover - well that would simply be exquisite, I'm thinking big O divine. (Phew...I think I just got lost in my own fantasy.)

But nay, I'll stick to my baby steps - both literally and figuratively. Not becaue I'm no longer an ambitious GHB (godless heathen bastard), but because I value my health, I'm sick and f***ing tired of disappointment, and the last thing I need right now is a concussive, face-disfiguring fall.

--But what's this have to do with IVIg?

I mean Everything! But also, nothing, nada, niets...
--So give it it's own damn post - in plain old ENGLISH.

I don't feel like it. And besides, I can make it work. I can pull it together. I can pull myself together. I'm on IVIg.
--We don't care about your feelings, but we do care about your feelings, but not enough to care more about your feelings than your recovery, and besides this is a world about pr
acticality (which you are so obviously not), and we care deeply, oh so deeply, about practicality, and you're simply and irrecoverably impractical.

(Sidebar on the Above Sidebar: internal monologue exposed; perhaps better left internal)

I'm in an I-DON'T-CARE-NON-SEQUITUR-OVER-EXPLAINING-MOOD that I can't and won't explain in its entirety for very selfish reasons, which include saving my ass (not my present ass but my future ass); it's the middle of the night; and after my bad-good-night's sleep (bad = 1.5 hours; good - I awoke at a decent hour to have a very deserved glass of wine and I'm wide awake usual).

So, when in doubt (and trust me, there's no doubt here) or in sidebar-mode, blame it on Aetna. Which, in this case, I have every right to, but which also in this case, I can't and won't explain for future ass-saving purposes. I hope you can forgive me on this one point of privacy (POP). I'll try not to do it again.

Speaking of Aetna and ass-breaking-saving, this is the perfect segueway to the more straightforward part of the first installment of IVIg is On...& In My Main Vein: A Monthly Update.
(Sidebar: Personally and contradictory to what I may have written moments ago, I wouldn't discount any of the above verbal drama as anything less than an integral part of this first installment)

IVIg HOME TREATMENT SERIES 1: 1.15.09-1.19.09
The update...finally
Today, or yesterday, depending upon how you view your schedule, I completed my first 5-day, much-fought-for round of IVIg miracle treatment. (Thank you Jennifer Jaff/Advocacy for Patients with Chronic Illness, Inc. and Kris McFalls/I.G. Living.) And according to the Aetna settlment (as I currently understand it and assuming I continue to have Aetna insurance), I can receive as many IVIg treatments whenever, however, and wherever I need them for the rest of my life.

Being home-bound is no fun, but it certainly beats prison, I mean errrrr the hospital, which is where, as an in-patient, I received my very first and more intensive round of IVIg treatment.

But, as a professional rule-breaker, I did exit my lovely quarters on 2, perhaps 3 occasions, and I did on 1, or perhaps 2 or 3 evenings, have 1.3 glasses of wine, instead of my prescribed 1 max.

Next month, I promise I will try to keep a better log of the ins and outs, ups and downs, of each day, but for this installment, I've already said plenty, so I feel no guilt. MOTHER, hear that?, I feel no guilt (It's a Jew thang).

The Log
Day 0, which really seemed like days 0 minus 20 to 1:
  • Due to the last minute decision by Aetna to overturn their 4-time denial of treatment, and the fast progression of my TM (I have been losing my vision since late December), and misinformation, and scripts faxed to the wrong pharmacy, and, and, and, my mother and I took matters into my our own hands, contacted the Aetna pharmacy and their mothers, brothers, and cousins 3rd removed.
  • An order for the IVIg meds and supplies was taken, noted, doubled-noted, recorded, and over-nighted with strict refrigeration instructions, or you'll be liable for this very very very expensive medication threat.
  • Helen, from the Aetna pharmacy, was so nice, she almost makes me feel badly for bashing Aetna, but Aetna would have to employ 1,000,000 Helen's before that happened.
  • Although we weren't assigned an infusion agency yet, Helen promised we'd have one in time for the meds arrival.
  • By the end of the day, Helen found me a home with my future infusers, Infusion Nurse Specialists, of whom I have too many comments to maintain in a bullet point:
I must EXULT Infusion Nurse Specialists (INS) and its nurses that administer my treatment. They're so beyond excellent, they apparently don't even need a Website (Theresa: (the company's owner), Let's talk), and I was so pleased with them that I wrote my first Yahoo review. So, if you want to know how much I LOVE my infusers, or if you're looking for (what I assume to be) the best in the biz for your own infusions in the greater Philadelphia, New Jersey region, read my short and oh so sweet review.
  • Lastly, I called William, my cleaning, driving, and package transporting helper, to do a quick sparkle-inducing job to my apartment, during which, I slept. It was a long day.
Day 1, Thursday:
  • My dear friend John, knowing I was nervous, as well as excited, offered his company, which I graciously accepted.
  • The meds, which were promised to arrive by noon, came at 9:45AM in four large and heavy boxes. How on earth does Aetna expect a sick person to transport these boxes to your apartment? All I can say is, Thank You John.
  • Due to the last minute-ness of this week, Theresa, INS's owner, had to squeeze me in. And since the colossal package arrived so early, she did too - around 11AM - her own coffee in hand (of course I demanded she let me make a fresh pot of La Colombe), huge smile, and ready to get to business...which on day 1 is a lot of business.
  • This business included: separating and organizing all of the meds (which were in my refrigerator, the supplies, including an EpiPen, as well as a sterilized city of gauze, pumps, mixers, bags, needles, BIG needles, tape, an IV pole, some devices (which if I lose or die and someone else loses, Aetna will hold us financially responsible), and making sure I took my pre-meds (Tylenol and Benadryl), and felt totally comfort.
  • A side-bar about comfort: At this point, comfort is not my concern. Healing is. Pain is irrelevant. By now, my tolerance is so high I could be the next MVP...except for the fact that I'm physically and visually challenged.
  • Aside from the quick and thick prick moment of accessing my port, the procedure was pain-free.
  • And I wouldn't have known otherwise because I slept throughout it...and into the evening...and through the night, until I awoke at 4:30AM.
  • Other than a hell of a lot of sleep, no noticeable changes yet.
  • End-time: Unknown
Day 2, Friday:
  • Nurse: Tina
  • Arrival Time: 10:30ish
  • Company: None
  • Tina & I had so much to talk about - energy, positivity, relationships, books, etc., it was a cinch to stay awake the entire time.
  • End Time: 3ish
  • Slept after she left for 3 hours.
  • Slept 2 more hours from 7-9PM.
  • Change: None. Still thrilled.
Day 3, Saturday:
  • Nurse: Theresa
  • Arrival Time: 10AMish
  • Company: John (for a couple hours)
  • Meds adjustment: 1/2 Benadryl; Goal: decrease exhaustion from treatment and allow me to enjoy my plans for the day
  • Result: I enjoyed my plans for the day.
  • End-time: 1PMish
  • Sleep Follow Up: 3o min.
  • Lunch Follow-Up: Yes! 2PMish with Girlfriend Amy from NYC and friend/Boss-man Stevie D at Monks.
  • Day-time Appetite: Yes! First time in 4 months. Hear dietitian's voice in my head: you need protein for healing and ate the entire burger (sans bun).
  • Sleep: 4:10 - 7:12PM until company knocks to watch the Steelers. Congrats Steelers.
  • Improvements: Tooooooooo personal to discuss in my current mood, but let me just say. Wow, what a relief.
I'm too tired...
(a side effect of IVIg) to finish this post in detail (it's 5:50AM now and I started at 2:45), and there's not much more to report.

But I must acknowledge nurse Mark, who offered great company, sound advice, safety modifications to my apartment, and put the wheels on my new plastic filing cabinet on day 4, and Tina, who was so sweet and comforting as she arrived on day 5 to a very, very teary-eyed and shocked me (again, no details for future-ass-saving purposes).

Final Results:

Measurable Changes
  • A few moments of relief of this and that and the other.
  • Nothing has stuck yet, EXCEPT:
  • Minimal increase in strength in my right arm AND
  • the unmentionable, which both should be considered to be at the same level as the moon and mankind analogy.
  • Possibly, a slight increase in appetite. Time will tell.
  • The ugly port access is replaced with a puffy bandage for the day.
  • The Steelers are going to the Superbowl.
  • Obama is being inaugurated.

Pictured Above: Accessed portacath (not mine)

To Come
  • I would request each of my nurses again.
  • I have 3 weeks of access-to-my-port-so-visible-people-ask-questions freedom.
  • It's also possible that improvements will continue between treatments.
  • I'm looking forward to reporting more improvements next month.

Good morning or good night,

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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.
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