Ketamine Cam Day 2: with spills and special guests

Mois...coming down from ketamine...again.






ALSO, even though yesterday was the official Scatterneuries deadline, I'll extend it until Monday for those of you who are dying to take part in this brand new online game.



This one is boobalicious.

*****

UPDATE
7.16.10

With 2 weeks of plasmapharesis, followed by a nerve block surgery (link warning: video of actual procedure) of my left arm, and 2 days of ketamine boosters, I have not felt this good in a while. My pain is down to a 6, and I'm actually able to enjoy being awake, walking around, and I'm going to paint today for the first time since this last flare-up, which started over 2 months ago.

Unfortunately, my ketamine boosters will be further apart from now on because the drug can cause liver damage (and it's basic scheduling protocol), and if my LFTs are adversely effected, I can not get treatment for 6 months.

Since I've been receiving ketamine, the positive affects (if any) have lasted no longer than 1.5 weeks before they started to dwindle. This last month-long wait was excruciating. I don't know what to expect, or how I will handle, managing my pain with this longer break between infusions.

Normally, follow up boosters at this stage are every 3 months, however, we're going to try for every 2 and hope that my liver can take it. But since the nerve block worked, I'll probably be getting one every 3-4 weeks.

The good news is, the doc, Dr. Goldberg aka Dr. G, is super cool - like hip hipster in scrubs cool, the hospital in Camden, NJ is actually gorgeous (despite its location) and amazingly stylish for such an icky institution, and they have the best hand sanitizer I've ever used.

Fistulas and Floaters: A Fluffy Fluff(less) Piece Follow-Up

Hello, my name is Melanie. I am a floater.

Yes, I admit it, I am one and I see them too, those buggy bug-like-snake-like-and-occasionally-verminesque dashes of absolutely nothing that dance like kittens on catnip, and according to "Expert Advice", there are no medications or supplements proven to treat or remove floaters - neither the human kind or the trippy eye kind. Yep, that's definitely me. (And so is the fact that I find this site on Now You Too Can Live A Life Without Floaters LOL funny.)

So, despite the shite (the rhyme was beeeegggging me) of life as a neuroquadrilogical (a neuro-ite with 4 disorders), apparently I, as a human I, am neither removable or medicable /ˈmɛdɪkəbəl/ Show Spelled Pronunciatio[med-i-kuh-buhl] (this is a real word).

Note that this post is being written at 8:30AM, and it's not the I'm waking up for work, or my morning power walk, or jaunt to the coffee house to get the best seat by the cute guy. No, it's the...

I'm-Still-Awake-Despite-Vicodin-NeuroNarcs-OtherNarcs-OtherOtherNarcs-RecentlyDoubleDosagedSleepingPills-and-AFewOtherOtherOtherNarcs-8:30AM.

Why?! you ask with mouth agasp astonishment, even though I witnessed a beautiful sunrise.

You just got out of a 9-day hospital incarceration, Melanie! you proclaim (I write redundantly, duh, there's an exclamation point, BUT think of that as your memory on XYZ neuro disorder, and maybe you'll understand me a little better).

You had a Lumbar Puncture, EMG, a hemoglobin count of 6.4 and an iron count of nearly nil, 2 blood transfusions, and a 2-hour fistula surgery (see gross video below) in your RSD arm, which became both visually unappealing and very RSD-y post-op requiring IV morphine (ahhhhh) to quell the pain! you castigate with love and a tiny dose of compassion.

You have RSD, since when did you have RSD? someone out of the cool people's in-the-know loop, inner-looplessly interjects.

That's the 4th -osis in the neuroquadrilogical grail, some do-gooder, yet somehow cool enough to be in the loop-er whispers under the raging voice of the still unnamed and determined sleep-begetter as though he OR she were Morpheus in the flesh.

Your osteoporotic /ˌɒstioʊpəˈrɒtɪk/ Show Spelled Pronunciation [os-tee-oh-puh-rot-ik] bones need to dream, and even tho it's contraindicated that your osteopenic bones hit-the-sack too, hit that sack, baby, I said hit it, you shout with growing fervor, fever, and a bit of kinky excitement.

What I meant to say is, umm, errrr, you need, I mean, really need, your beauty sleep, you whisper trying not to sound perverted, invested, or ridiculously and/or inappropriately judgmental.

Here's the dealio. Up, Down, Sideways, or Snowfallen, YOU SHOULD be sleeping!!!! you prod as if I chew my cud. As though you could even play a doctor on pay-to-be-on-it TV (I think with a 3-snap-Z).

And now you're nagging. And all sickos; friends and family of sickos; and doctors, nurses, and caretakers of sickos know - don't nag the sicko.

But wasn't that a fun way to let you know what I've been doing for the past week and a half!


DIG MY FLOAT
To clarify my opening statement, I am undoubtedly a floater. I float between home and hospital. I float between reality and the occasional hallucination or delusion (don't worry, now I know it's NOT 1985). Meds do not work their magic on me, so I float between sleep-time and wake-time, all of which is in-pain-time. My life as I knew it or want it to be is somewhere afloat, so I also float between treatment plans, treatments, med changes, flair ups, relapses, and/or exacerbations. I lay on my couch more often that I care to admit as though I am floating, nothing touching my skin, causing me pain. And my train of thought is super duper floaty (sign: I'm stretching the metaphor...STOP HERE).

IN ADDITION TO THE ABOVE RANTS AND INTRODUCTIONS,

Due to a recent flair up that included insane pain down what felt to be my swallowing path, the inability to exhale or speak or swallow, dizziness, and some other strange happenings, my fabulous and famous neurologist, Dr. Schwartzman, had squeezed me in last last [sic] Wednesday for an emergency visit. The result:

Back to the hospital I go. And I was admitted Monday for what was supposed to be a few-day stay. I know by know to use a variety of complex mathematical equations to estimate the actual duration of my hospital life.

I had my fourth spinal tap, which coupled by watching the video below now makes me certified to begin giving LPs to any sucker; got my 2nd round of blood transfusions; my 2nd EMG of my life (the worst test ever) tho I was spared the needle jiggling in the nerve ending 2nd half; had my regular IVIg therapy; had consults with a hematologist, my rheumatologist, a podiatrist (don't ask), and a couple other 'ists and 'ents; and a bunch of other stuff including having way too many hot flashes for a gal my age. I have a lot of follow-ups in the forthcoming weeks. And hopefully, they'll be able to figure out the cause of my new-found chronic anemia.

Author's Note: This is sickly funny.

I almost made it the entire stay without a roommate (yippee!). And just as my mother had warned the staff as they began preparing the room for a 2nd body while I was in surgery Monday, crabby Melanie returned from the OR and reared her wormy, bruised, apple-ish head, but nothing that a hug couldn't overcome...and a xanax and migraine meds. I could go on about my lost sanctuary, and it would be funny, but it would be mean too, so I'll bite my fingers, and just say, you had to be there (and I might mean that in more ways than one).

On Tuesday, I was discharged from the hospital by a soon-to-be-remiss resident without any scripts, including one for pain meds for the fistula surgery,

(Wikipedia: In medicine, a fistula (pl. fistulas or fistulae) is an abnormal connection or passageway between two epithelium-lined organs or vessels that normally do not connect. It is generally a disease condition, but a fistula may be surgically created for therapeutic reasons.)

Author's WARNING: This video may be deemed gross by people as hardcore as even me. I lived through it, but thanks to modern bliss, I didn't see it.

prescription-strength iron for my red-blood cell-less bone marrow, or that Sally Fields medicine or something like it for my oustish steroid-chemo habit that has left my hips and spine as delicately vitreous as any kind of wine glass - cheap, semi-cheap, restaurant-grade, or imported from the glass capital of Europe expensive - in my incapable hands.

But, most importantly, as always, my mother was there for most of the journey of what may be my 5th or 6th (I've lost count) extended hospital stays, as were a select few of my most supportive (and available) local pillars who visited as often as daily (can you believe it!), and many more by phone, text, or mental telepathy (i.e., I'm giving you an out...take it). I made a new and amazing neuro friend. And this time, Dr. S finally made some headway on his promise from almost a year and a half ago of having cute interns.

Finally.


PS I'm sure I'm forgetting important things, but by now you know better than to expect me to remember much.

PPS This post totally qualifies as a "My Life Sucks But I Rock" post.

PPPS Maybe now that I have some red blood cells, I'll find the energy to write more.

PPPPS I'm not making any promises.

PPPPPS This is my arm today(!):

False Alarms Are A Bitch (that's so not PC but f**k it)

For those of you that were planning on visiting or sending me cards and pricey gifts while I twiddled my time away at the hospital yet again, I'm sorry to disappoint you, but the prison sentence has been terminated.

At 10:45 AM, after numerous un-returned phone calls, I made my last and final call, where I must admit, I got a little bitchy. After all, I didn't know if I could drink my morning coffee, take my meds, have a sip of water, or eat anything (which with my appetite I could care less about, but it's the principle!).

As it turns out, my doc just temporarily forgot how stubbornly independent I am, and he wanted me admitted because I'm single and live alone. How's that for rubbing it in?!

The good news is my OUT-PATIENT surgery to re-implant my permacath and portacath is tomorrow, and I begin OUT-PATIENT plasmapharesis Thursday.

So you know where to find me for the next 3 weeks - either sleeping thru plasmapharesis on the apharesis floor, or sleeping on my couch after the plasmapharesis. For those of you that haven't experienced plasmapharesis or never heard of it, look it up. Just kidding.

Basically, it doesn't matter how big or strong you are, this amazing procedure knocks you the f**k out. And it leaves you stranded without an immune system, which if you're screwed up enough to need plasmapharesis, it usually means you're better off without your own immune system, because it's a bad, nasty, recalcitrant, serial killer of an immune system that must be discarded as biohazardous substance immediately and forever.

PS That's not me in the picture. And even though it may or may not be degrading, salacious, or inappropriate to some, I thought it would grab your attention. After all, it did mine. Think of it as a little gift from me to you for causing you any more worry than I already have. Don't thank me. I'm just, ya know, generous like dat.

Happy TM Anniversary to Me and Other Contradictions

Is one year of living with Transverse Myelitis something to celebrate? Probably not.

But considering that I live in a fantasy world called Mel Land, where rights are wrongs, and wrongs are rights, and left is the only political option, and any day of importance - whether heartbreaking, backbreaking, lifebreaking, or just fucking shitty - is reason to celebrate, why the hell shouldn't I celebrate. After all, I've survived (for the most part) one of the shittiest years of my life. And who knows where next year will land on the shit meter?

Breaking news: Just got a call from Dr. Schwartzmann's office. It's back to the hospital I go - 2 more weeks for inpatient plasmapharesis and who knows what else; starting off with surgery to place the permacath and possibly the portacath too.

Now I'm questioning my own determination to celebrate my 2nd year of survival. Because at this moment, I'm crushed. I just want to be free.

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-

...And After

Even though I was in no mood for surgery today; really, there are some days that I don't mind a little or a lot of poking and prodding, everything turned out fine, and I got to see my OR nurse friend Sharon again. Good people spread good vibes.

No one --from the procedural admissions staff to the patient transporters to the OR staff - could believe the reason for my quick surgical return (See: Why Insurance Companies (Aetna) are More Corrupt than the Mafia...a non-academic crime story).

My super kind Aunt Marci flew in from Montreal and met me after on the 9th floor after the surgery. I cajoled her to drag our legs a couple of blocks to a better taxi-flagging location. Even after being sliced open, I need efficiency.

I'm tired and drugged, so I'll keep this short and just share a couple aftermath photos with you. Feel free to laugh - my sternum might be eligible for a sideshow gig.

PS Plasmapharesis starts tomorrow. Yippee! They'll be using the port with the udders attached.

Surgical Symmetry - Prepping for #3

This morning I feel it is appropriate to talk about myself in the third person.

Melanie is not in the mood for another surgery.

Last night, Melanie saw the advantages: She was gifted with a three-hour race before NPO to drink two vodka & oj cocktails, try to eat something (Amy's Indian Palak Paneer frozen dinner), finish up a copy doc for a 12/3 deadline so she could enjoy the aftermath of anesthesia without having to drink a pot of coffee to regain her writerly sobriety, stressing through another deadline.

But today is her third surgery in one month, her last day of assymetrical sternal scarring and extrusions, and her first day of quatro-boob (def: woman or man with two catheters, one just above each breast.)

So in her morning haste to capture her before and after before leaving for her 6AM hospital registration appointment, she sat in front of her computer, resent the latest version of her copy doc to the copy director, and photographed the last morning of her sternum as it's evolved, she'll load the three photos, and race off to the hospital...late as usual.

She'll probably have more to say later. And she'll probably find grammatical and spelling errors and phrasing that doesn't suit her or anyone.

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.