Tapped and Plugged

TAPPED
I had my 2nd my spinal tap yesterday, and aside from the obvious excruciating pain that follows a doctor sticking a huge needle into your spinal column, navigating nerve to bone and sucking out precious fluid, it appears that that tap also taps into so many of the questions we Transverse Myelitis-ers and similar disorder-ers face.

At least it has for me...like a surprise knock at my door.

From my history as a dancer/choreographer, I have lived by the Body Mind Connection, or Body-Mind Centering (BMC), and I've experienced the profound links that exist within the labyrinthine corridors of our mind and body. When one has a neuro disorder, like Transverse Myelitis (TM), those corridors become a DO NOT ENTER construction zone, off limits even to the body's owner (i.e., me in my body, you in your body).

But when the doctors comes a tappin' and the all-smiles anesthesiologist comes to take you into a much-loved and deserved outer-body experience (I have to be put under for spinal taps and MRIs because of severe myoclonus - imagine a needle going into your spinal column and a major body spasm meeting paths: hello paralysis!), some of those corridors are cleared, and questions and emotions come a flowin'.


Knock Knock
We rare-disease-chronic-illness-neuro-autoimmune-limbo-livers already have a plethora of questions and emotions to answer, ignore, actualize, embrace, rail at our doctors, or toss out the window of our 18th floor apartment (might I be projecting a bit?).

But something happened yesterday - in my body and in my mind - that clarified one important issue.

I'm screwed. My life is changed forever. So...


What can I do? Who can I be?
Luckily, my ever-supporting mother flew from Pittsburgh to be with me this weekend, so I've had a constant companion to bounce these questions off of, and for a mother, she's been amazingly non-judgmental (aside from the occasionally obligatory mom-nag here and there) and quite resourceful. The questions are: am I me as I am now?, as I was then?, am I me as I was based on then?, or am I a new me based on not knowing any of these Me's?.

For a 33-year-old, I've had many lives, including multiple careers, tragedies, hobbies, educational endeavors, travels, homes, countries. If I just explored the last 5 years, I couldn't contain the list to 10 fingers:
At 28, I married my composer in a beautiful outdoor-October Buddhist ceremony composed of water ceremonies, close family and friends, and three bald heads (my uncle's from chemo, mine in support of his chemo, and the Buddhist monk). I was touring the country with my dance company and the world with his work. At 29, I retired from dancing due to unrelenting hip and knee problems, while moving myself and my nonprofit dance company to Philadelphia, becoming dual-city (not recommended), to follow my husband (also not recommended) who landed a great job in the great city of brotherly love (which I really do love).

That year, I bought my first house (in my name!), began pursuing my MFA, and spent as much time on the road and in Pittsburgh as I did in Philly, caring for my dance company and my uncle/father-figure/friend, Kevin Wander, as he died of a brain tumor. The latter event series was a complete de ja vu of my life-altering 18-year-old experience: replace MFA with undergrad, uncle with father, and husband with boyfriend (both of same name, same spelling.)

Just after my 31st birthday, I was diagnosed with Chronic Kidney Disease (CKD), became separated from my husband in the same week, saw a career counselor, started a freelance writing and consulting business called CoolMelanie.com (the URL was available...and I have no qualms calling myself or what I choose to do with my life cool, so there), was accused of being a prostitute (not by the law but by my soon-to-be-ex-husband) among other things, and finally saved enough money to move out of my house.

By 32, I had my first full-time employee with benefits position EVER as a full-time senior copywriter with an interactive advertising agency, and although it took some time getting used to being the employee and NOT the boss OR a world-traveling artist, I loved it.

I've presented about 1/100th of my good, bad, and evil experiences within 1/2 a decade. I feel like I should apologize right now.


So you'd think reinventing, or redefining, the self would come naturally?.!?
It doesn't - even when you're a life-change-embracer.

Sometimes it creeps its way into your existence or it happens overnight. Sometimes it's forced on you like divorce papers. Sometimes you choose change happily, reluctantly, or by some outside force that can't be resisted (like love, your mother, or prison).

What do you do when your life careers are based on a more-than-competent mind and body? And in this society, we are our career, and as an artist, I may be biased, but I believe this is more true with the arts than any other career.

And what do you do in an economy that doesn't have room for fully-abled employees, let alone a gimp like me - laid up on the couch (today from my spinal tap and other days just from pain, exhaustion and fatigue), home-bound 5 days out of every 4 weeks on IVIg, plus endless doc appointments, tests, rehab, and occasional hospital stays.


Second Guesses
As I write this, I'm second-guessing my honesty: what will my current/future/potential employers think? Am I shooting myself in my neuropathic foot? Is disclosing the pressures, disadvantages, and discrimination against the disabled (yet abled!) worth the potential harm it could inflict on my own money-making, career-keeping potential?

I'm also second-guessing my potential - for recovery; for employ-ability; for my own value to this world, this economy. And therefore, I feel remiss, that I'm second-guessing everyone-else-who's-like-me's potential.



PLUGGED

Plug for Rich Man's Hope
It's 8:41AM and, ironically, Bill Cosby and Dr. Alain Poussaint are on the Today Show (click link to see the interview) talking about hope, potential, and role models (as well as promoting their book, Come On People) - not just for African Americans but for people with high blood pressure, a little on the easy-side of disease, but hey, at least they acknowledged some sort of chronic illness.

Know your history, know your future, they say. I'd love to take their advice, but for those of us with rare diseases, is there enough history to learn from? We certainly have role models, like Superman, but he had money and fame behind him. What and who do we normal, bourgeoisie sickies have pushing our wheels up, up, up, up hill?

Sure, there are examples that we can mold to our lives. My uncle's fervent fight against his fatal diagnosis is my inspiration, but it's not my answer. His situation does not match mine. I have met and adopted my superheroes all over the world - other TM'ers, my family, my doctors, fellow neuro patients and disabled friends - but we all have our own story, our own path, our own battles, and our own abilities and inabilities, and our own visions of what we want from our lives.


Third Guess is a Charm
I'd love to say, Melanie, Come on People (me), click my heels 3x, wiggle my ears, flare my nostrils, and have a luminous answer. I may or may not have to devise a new career (again...) - that's an unknown until recovery rears it's pretty spinal column - but no matter what, I have to redefine myself. I have no choice.

From the day I became incontinent in front of Rittenhouse Square, I began transmogrification into the porta-perma-cathed-spinal-tapped-IV'd-thin(literally)-skinned-immuno-suppressed-puffy-cheeked(though my mom says I look better this way)-boobless-buttless-bruisable-spasming-occasionally-partially-paralysis-legged-word-losing-short-term-memory-pants-pissing-fire-body animal of a human that I am today. And that's me - drugged, poked, prodded, pained, forgetful...

and adapting. After all, I'm in my third generation on this earth. I better be able to figure out some things on my own, right? We lose our right to make excuses, when we gain our right to vote.

I stink at asking for help. I want to make it on my own. I want to recover. I want to be me.

Every day, we are new "me"s. My new me, just happens to be like an earthquake that doesn't have a lull in sight. But we TMers are used to balance issues. That's what walking canes and durable medical equipment are for.


Questions, Answers, Plugs
I've asked a lot of questions, and I've given few answers. I've plugged a book by a famous man and a rich man, so now:

I'm going to make a little plug for me. (big font intended...think bullhorn announcement)


Neurochic, neurochic, neurochic...remember the name
While I still don't have answers, I have plans, and one is called neurochic. So, check it out, tell me what you think, tell me what you want from me, from it, and if you can, help me make it happen. Please. I do need your help. And I want you to be a part of it too.


I'm sick of the ugliness of this diseased world. Are you?
Many of us, sick or not sick, are lost in this world; in this economy; in medical, corporate, and governmental bureaucracy; in our own reality vs. reality vs. reality (repetition intended) heads. I happen to be one of them with some exceptional circumstances, but I'm one of many in this latter category.

(Another plug:) Neurochic is my first step out of immobility and into ability, in this case a very fashionable mobility.


This Ain't No Martha Stewart Thang
So, screw the this grisly world and our uninviting-Martha-Stewart-good-host-lesson-needing- minds that don't have space for me or you. While neurochic doesn't answer all of my questions, nor was it inspired by the BMC-induced spinal tap of yesterday, it is part of my answer to my own uncertain existence. And hopefully it'll sex-up the unsightly world that we - the deformed, disabled, sickly, ailed, jobless or soon-to-be jobless - have no other choice but to exist in.

-End Plug-

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.

1:00AM-3:00AM

• 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!
  

3:00AM-5:15AM

• Sleep in bed. Cuddle with cats.
• Wake up. Why?!

5:15AM-6:00AM

• 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.

6:00-8:30AM

• 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.

8:30-8:50AM

• 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.

8:50-9:10AM

• 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.
  

9:20-11:15AM

• 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).
  

11:30-1:00PM

• 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..."
  

1:00PM

• 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.

1:50PM

• 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 call...work on copy doc. Need to get to 50% by tomorrow AM.
  
• Wait for call...work on copy doc.
  
• Wait for call.
• Give up. Move on.
  

3:30-4:00PM

• 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.

7:30PM

• 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.

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

A Holiday Inspired Post

Note:
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
11.29.08

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 clouds...it 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

10/28

• 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.

10/30-11/8

• 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.

11/9

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

11/14

• 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.

11/18

• 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.

11/19

• 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.
  

11/20

• 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.

11/21

• 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.
  

11/22-24

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

11/24

• 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:

12/2

• Surgery to remove portacath implant and replace with permacath implant
  

12/3

• 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 missed...by 4 minutes, I cried for three hours straight...at 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.

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.

xo,
Melanie

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...