What We Were...a psychogenic illumination and Q w/o A

PREAMBLE...you may've heard it before, but hear it again.
About 1 month past my 33rd birthday - when I had danced in my fave platform sandals that highlighted my modeled calves and thighs, partied among a collection of mismatched and matriculated friends, drank wine, ate with a full appetite both for food and life, drank more wine, and snuck hand-holding with man of the month (not my month, but his) - I found myself lodged in an unexpected world, a trip and tripping...2 Septembers ago, 4 weeks past a month of unfathomable, unnameable outer-body, outer-mind, outer-control-of-my-own physical and mental experiences - from street-spinning vertigo, buckling knees, emergency room visits, public incontinence, and finally partial paralysis and full-body pain and sensitivity making walking nearly impossible - I had the luck, yes I said luck, of receiving a swift and accurate, yet unexpected and unheard of diagnosis - Transverse Myelitis (TM).

Immediately hospitalized for more than a week on 1000mg of IV steroids and myriad tests, my doctor was hopeful, or at least he used his doctorly knowledge of the benefit of hope to tell me, I'd be back to normal in a couple of weeks - back to dancing, boyfriends - as many as I wanted, and my job - those things we call freedom.

In those two weeks, my condition worsened and with ongoing steroids stealing my sleep, I had the time and (still) the mental capacity to research this strange and rare condition. Within less than 2 weeks, I was back in the hospital; this time for two weeks receiving two treatments to cleanse my body of the angry antibodies that were attacking my nervous system and spinal chord.


LIBERACE WAS MY CO-PILOT
I had lived a life of luxury - not financial, but emotional, experimental, risk-taking, following my humble choreographer's vision to change the world, or at least, a few square miles of it with the communicative and evocative power that only the body in architected motion and meaning, and the mind dedicated and directed in devoted poetic outreach and activism.

Why was my body, that for nearly a lifetime I had sculpted, strengthened, and serviced like a mustang and its overzealous owner, so angry at me?


BACK TO SICK BAY...sea sickness and docking
The second round of in-patient treatments - plasmapharesis followed by IVIg - helped, but didn't fulfill my doctor's promise. He changed his prognosis to a long, arduous 2-year recovery period, yielding an undefinable prognosis.

However, Dr. S promised he would do everything he could to bring me into the realm of the top 30 percentile of TM recoveries, returning me to my previously full-body control state - bladder and all - or at least as close to it as possible. The 2nd third promised minimal or no change, and the bottom third, a bedridden lifetime or ceaseless paralysis.

Since the first symptoms appeared about a week past my birthday, I figured by 34 or 35, my struggle would be over; the prognosis finalized, I'd pick up the pieces, work with what I had, and get back to a normal life - fleeced of uncomfortable and time-consuming treatments and a body in revolt.


AND BACK ON THE GORGE(S)
That actuality almost ended one day before my next birthday, when the second diagnosis of Multiple Sclerosis (MS) was confirmed and delivered. Although closely related to TM, 97% of people with TM, especially those that fall in the 1st 30 percentile continue throughout the "recovery period" to experience recovery, while MS, for most is forever degenerative.

Even though I didn't yet fit in that tantalizing 30% TM category with new symtpoms popping like movie corn, and old symptoms ebbing and flowing, my doctor and I still had hope, and he still promised things will get better - at least on the TM side.

But now there was not only TM and its accompanied autoimmune encephalitis that clouded my cognition and former intellectual musings and doings, but there was MS. One with an up-view, one with a down-view, and possibly both just waffling along on a fixed tightrope. So the MS treatment started and six months later my lesions held there ground, which is something I consider lucky. My MS was standing ground, not degenerating.

This all came following many return hospital stays - my body and mind not only in revolt, in states of varying dementia, but pain greater than being run over by a car - and I had the right to make that comparison. My cane, a walker, a wheelchair - I knew these mobility assistance devices well; I was naked, if not useless, without them - naked in every sense of the word.


OKEY DOKEY
I came to terms with the TM and its recovery period. I accepted the MS. I did my mourning in due order. I had let these disruptions become a part of me, as well as the deformations of mind and body - whether or not friends, lovers, or strangers concurred.

***

When I returned to the hospital, by then my second home, in February 2010 due to a public relapse that rendered me attached to a lovely but highly-priced couch in West Elm, waving off the sales people who thought I was there as a customer and not a patient with the inability to exhale, speak, or swallow, profound internal and external pain and weakness, and a well-timed stay for my necessary fistula operation (another physical deformity that I hadn't been fully briefed on, also used for dialysis), I was ready for the same old same old.

Not this time.


THEY SAY 3(and a 1/2 and then some) IS A CHARM
RSD. Another diagnosis. Another incurable and barely understood neurological disorder. A painful, ugly, unimaginable pulverization of my peace.

And not only RSD, osteoporosis and chronic anemia as well.

J., one of my regular nurses said, I thought you were going to get that [RSD] diagnosis. When I asked how she knew, she replied that my previous stays and their accompanied tear- and (not my quiet, stoic high-pain-tolerance-way) shriek-inducing bodily-induced-torture that tipped the scale to a hell I didn't believe in, had all the markers.

***

Most of you know all of this already.

Most of you may not know, now, when I asked that pervaisve question, what do you do?, I answer plainly and truthfully, I'm a full-time patient.


THE WAY WE WERE

I'm returning to the history of my neurological detour to make a point that found its voice in a delicate woman - my IV Ketmaine booster neighbor of the week. (I'll post the Ketamine cam vids later, at a more appropriate time)

When it was just TM; when it was just TM and encephalitis; when it was just TM, encephalitis, and MS, I still introduced myself as a freelance writer and an artist. Even though I was on long-term disability and SSDI, and that glorious work that once defined me, that gave me purpose, something, anything to look forward to was becoming more and more of a mirage, I knew I had a future - something to go to, someplace to arrive, some kind of existence in which I could be and do and contribute to this thing called society, a community that I still belonged to in some way.

But know it's more than a neuro detour, it's neuro soup, and the basic ingredients are identified (thus far), but the subtle spices that give it its flavor are a mystery. A mystery that is even more spicy than the life I can live now.

This neuro detour-soup is a life of what was, the way we were. In the infusion suite where we are a community, and in that other real world filled with fully-abled, employed and under-employed citizens, we introduce ourselves as what we were:

I was a dancer.
I was a mother.
I was a doctor.
I worked construction.
I was a student.
I was, I was, I was...

We talk in terms of what we were, not who we are. And rarely, if ever of what we could be.

We have so many stories of disappointment, loss, pain, mistrust.

Like my compatriot in the reclining chair next to me awaiting our treatment - our hope for some release from the consuming pain, swelling, burning, and sweating of RSD - her family doesn't trust her with her grandchildren - mine with my beloved nieces.

She tells me this. We both cry as silently as possible.

Even in the people's eyes who know us best, who you'd think know our capacity, we are not trusted. We are as unreliable as an addict, but the only addiction we might be guilty of is hoping for a cure, an end, someone, some people who will accept and love us for who and what we are, those special souls who will stay and stay true to who they are and who we are.

It is hard to have hope with these conditions.

It is hard to have hope when insurance companies deny coverage for the only treatments that may bring us some relief, hopefully even remission.

It is hard to have hope when friends, family and lovers give us all the love and support the globe can sustain and when the flare-ups takeover our ease, our freedom, they take their freedom and run - fearful that we'll swallow theirs too.

Yes, hope is imperative. Goals, careers and futures give lives meaning.

So tell me, where do we, the incurable neuro-ites, the stoic pain-stewards, the logically hopeless keep that precious medicine in our personal sphere of self-protection and healing?

In this neuro-life, it is the experience of many of us that the people we love and admire stop trusting us, stop feeling comfortable around us, stop wanting us - in our less than perfect state - in their lives as we are, or as we could be? (Sidebar: If I find the purpose and/or strength and/or utter openness, I will offer physical proof in a future post.)

How do we keep hoping? How do we continue to trust? Can you tell me this - honestly?

I want to know. Trust me.

Our Day Came and Went..in Australia?!

I'm embarrassed to admit, but I rarely look at the News Listings on my own blog, but psychic energy drew my eye there today. And what did I learn, Australia has a national Transverse Myelitis Day!

Unfortunately, many of the few of us missed the opportunity to join in this year, as the little known day, May 17, has passed.We could make our own, but why not join forces? Why not initiate an international TM Awareness Day?

We could do it grassroots, but I'd like to make it official. Don't you? So.....


HEEELLLLLLLLP!

1. ***Does anyone out there know how to make TM Day an international reality?
2. ***What organization(s) are responsible for actualizing this & what is the procedure?

Don't know yourself? Don't leave us TMers hanging without our own holiday....

Tweet it. FB it. Ask your family doc. Ask your local politicians. Ask God, Jesus, Buddha, your hairdresser, manicurist, or neighborhood psychic.

And while we're at it...let's work to unite all neuro-ites with an International Neurological Disorder Day (bolded in place of a much-deserved hyperlink) too.



EXCUSES, EXCUSES
You may be asking, Why don't you, Melanie, do it yourself? The answer - I'm impatient, I want an answer/resolution asap, starting tomorrow I have a week of double treatment (IVIg & Ketamine Infusion boosters), I'm entering another RSD flare-up, I'm exhausted and cognitively impaired, and I can't do everything. I can barely do the requirements of a full-time sicko, let alone manage my life and the lives of every TMer across the globe.

When I started my professional dance career, the first choreographer I worked with often said, It's my job to make it up. It's your job to remember it [do it]. So everybody, let's listen to Patty, and immortalize her contribution to the dance world...and my world.

Chop, chop! I'm looking forward to a lot of comment responses to this one.

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-

Losing Vision, Losing Sight

Over the past few months, I've dealt with an irksome but manageable symptom: blurry vision. Annoying? Yes. Life-altering? No.

During the past two weeks, while I CONTINUE to wait for Aetna's response to our claim for IVIg treatment coverage and while my neurologist was on vacation, I began to lose my vision. On Tuesday, December 30, I awoke to the walls closing over my eyes - extreme blurriness, double vision, and lack of peripheral vision.

While the written word is my medium, since I can't see it, I'm compromising with myself. I'll be posting V-logs until I get the software and technology that I need to be able to communicate in the way I feel most comfortable, and coincidentally, the way I make my living. (shhhh!)

Today was a hectic, non-stop gut-wrenching, physically-emotionally-spiritually drop-you-on-your-ass-life-you-up-then-repeat-the-cycle-all-over-again day. (See, I can't help but write.) I'll let the vids (not my hair in them!) do the talking.

Losing Vision, Losing Sight - Part 1

CLIP 1: A title changed by a corrupt medical system



CLIP 2: It's My Body



Losing Vision, Losing Sight - Part 2
My Life Sucks, But I Rock





I could not occupy another pixel of space in this world today without thanking and acknowledging the following people and organizations for their combined support, advocacy, and services:

Jennifer Jaff, Advocacy for Patients with Chronic Illness, Inc.
Kris McFalls, IG Living
David Goldfield, Associated Services for the Blind and Visually Impaired (ASB)
Temple Institute on Disabilities' Assistive Technology Program
Mom
AM (Aunt Marci)
Dr. Arthur Huppert, Rheumatologist, Drexel University

For technology and assistive resources for the blind and visually impaired, I strongly recommend Temple and ASB (links above). Though locally based, they are national in reach.

Please Sign this Petition for Spinal Cord Research

Let's start 2009 by taking action.


Hi and Happy New Year (or as I call it New Moment),

I just signed the petition "Signatures for Spinal Cord Research" sponsored by Step Now. I'm asking you to click on the (first) link above and add your name to this petition to help us reach our goal of 1,000,000 signatures.

Adding a personalized letter to petitions helps to ensure success. Please feel free to use my letter (below) as an example or a template, or just simply take a couple seconds to type in your name and click submit.

On behalf of individuals, friends, and family of SCI sufferers, I deeply appreciate your support of this cause.

Best,
Melanie

PS BONUS! After signing the petition, I was also sent a thank you letter with a coupon code for $10 off at Gaiam.


MY PERSONALIZED LETTER
On September 18, 2008 I was diagnosed with Transverse Myelitis, a rare and debilitating neurological disease that attacks the spinal cord, leaving 30% of its victims paralyzed or bedridden for life, 30% with partial paralysis and other socially and physically painful disabilities, and the other 30% with partial or near recovery. Few ever recover full function, and not one of us knows which percentage we'll end up in, or if a recurrence will take us into a deeper level of disability.

I am more than a date and a diagnosis, and I'm trying to figure out who that person is now, but that's difficult to do when insurance companies deny coverage of the few available treatment options.

Before my disease, I was an active 33-year-old and was once a professional dancer and political and social activist. Now I live moment-to-moment, doctor-to-doctor, and med-to-med without enough energy to participate in any of my old activities, let alone a normal life. Now my life is spent navigating a new world with a rebellious, disabled body; an altered mind; and battling insurance, as well as the ongoing pain and effects of a body in revolt.

Without new or definitive research, insurance companies will be able to continue to deny coverage of viable treatment that can either increase ability or deliver a cure. Whether SCI is caused by disease, disorder, or injury, we deserve the same medical, life, and work opportunities of fully-abled people, but this is not currently the case.

I urge you to support the critical research that will give those of us suffering from SCI the opportunity to have the ability and energy to be contributing members of society and experience the same joys of living of fully-abled people.

Data Dummy: Johns Hopkins - The Neuro Masters(?)

An Update-less Update
A Fruitless Follow-up to: Subjective, Objective, Fact, Figure, Data, Ativan Hangover, Expectations, Boohaha (posted 12.17.08)

Author's Note: I am typing this by muscle memory through blurry eyes and double-vision. Please forgive typos. Disclaimer: Quotes may not be exact due to short-term memory.



I have never been more more misled or lied to or misled since my diagnosis of transverse myelitis(TM) on September 18, 2008. Relative to my 33 years on this earth, that's a statistical nightmare.

Who are the culprits? Enthusiastic-I-Heal-All-Wounds-And-Ailments-Specialists.

While I appreciated the optimism (and believed it) in the beginning, I'm up to my c-spine with broken promises and the knee-knocking disappointment that accompanies them.


JOHNS HOPKINS: THE TRANSVERSE MYELITIS "MASTERS"
or
PROMISES SHROMISES
It took a lot of work: on-line-researching, faxing, phone calling, faxing, hospital-records-visiting, faxing, plane-and-train-reservation-making, emailing, faxing, referral-getting, case-worker-consulting, pre-cert getting, phone calling, emailing, faxing, work-leave-permitting (I've used up every sick and vacation day and then some for hospital stays and surgeries), and in-Baltimore-transportation-arranging to prepare for the (relatively speaking) biggest, best-est opportunity of my lifetime: my appointment with the masters of TM.

Not only was I offered an appointment quickly - less than a month after they received all of my records, but as fate seemed to have it, they were practically in my back yard (it's a 75-minute train ride). I even had to turn to down an earlier appointment because it coincided with the start of my 2nd round of plasmapharesis treatment. Getting into Hopkins was like winning an academy award, being accepting to any Ivy League School, getting a $10K raise, winning the frickin' Olympics Gold Medal in swimming without knowing how to swim.

This was a match made in heaven, and in heaven there are no sick people or alarm clocks, everyone smiles and smells like vanilla blossom, nobody loses their keys or their lunch, and all questions have answers.

On December 17, 2008 - three months after my diagnosis, and two days after my last plasmapharesis treatment - my mother (who flew to Philadelphia from Pittsburgh (again) the night before) and I rode the 7:30AM train to heaven, which in this case was located in Baltimore, for my appointment with Dr. Pardo, a specialist at Hopkins' Center for Transverse Myelitis Research.

At the end of that 13-hour day, my mother was convinced that heaven did exist - we were on the right(eous) path. But I was tired, frustrated, and admittedly a bit puffy-eyed because we arrived with questions and left without answers, and as we all know, that's not heaven's tenet.

And the reality of hope sets in:
But by the next day, once I had processed the information and awakened from my Ativan coma, I recognized that no matter what my test results were, Dr. Pardo was going to help me:

1. He PROMISED to verify the TM and seek the larger, clearer, more inclusive diagnosis that he believed he would find and begin a new and improved TREATMENT plan based on those findings.
2. He PROMISED that if they were unable to make a clear diagnosis that they would DESIGN a TREATMENT path (perhaps by trial and error?) REGARDLESS of whether or not the new data findings were conclusive, which would be based on a "best educated assumption" of what was debilitating my mind and body.

These wonders were to occur within three weeks. Additionally, we were told we'd receive the results from my latest MRI on their state-of-the-art equipment within a few days.

Triple Yay!
A new plan to come. New hope. New possibilities for recovery. A new me, more like the old me was in my future again. Recognizing that Dr. Pardo not only had a nice smile but was going to provide me with the most appropriate, best, progressive treatment available was all I needed to feel some relief.


THE BAD BOYFRIEND DOCTOR
After several calls to Dr. Pardo's office requesting the MRI results, and some in-the-mean-time-while-my-condition-is-worsening direction, we finally received confirmation on Friday that Dr. Pardo would be calling me Monday with "further instructions."

A really bad boyfriend wouldn't have called at all, so I have to give him that benefit. Plus, although he felt me up and down with soft hands and iron-hard devices on our first meeting, I didn't offer any compensation.

But like most bad boyfriends who sweep you off your feet with their charm, promise the world and the moon, and to be there when you need them, but then ultimately drop you on your ass without padding or explanation (except that it's your fault) and a devout unwillingness to answer what you perceive to be important questions, I'm remiss to state, Dr. Pardo fits that role.

Like most women who find themselves with bad boyfriends, I sniveled while he let me down, sobbed when we said goodbye, consulted girlfriends (mom, Dr. Marni, and Alicia) who rooted me on with their "you're the best", "this isn't right", "how dare he", "we won't stop until we get you better" support.

While I'm ready to give Pardo a second chance (another condition of the good-girlfriends-attracted-to-bad-boyfriends-syndrome), it doesn't change the fact that I'm pissed off - not only by his deception, but that I'm yet again in limbo. I can recover from another's perjury, but there's no way my once malleable body could fold itself into the crowd-awing back-bend required to win that game. (Sidebar: In middle school, I was quite the limbo champion.)


THE LET DOWN
Over the last four years of "dating" myriad specialists, I've devoted myself to the few who not only find the answers, but do so proactively and with compassion. I expect the same from my docs as I do from my friends, boyfriends, or employees. Do what you say you're going to do, i.e., act with integrity.

Some doctors are data doctors. Some look at the big picture. Some speak in terms anyone can understand, and some speak to you the same way they'd speak to a fifth year med student. Some give you definitive answers, and some give you possibilities. Some predict your future, and some make your future.

Dr. Pardo presents himself as a big-pic-predict-and-make-your-future doc - a total package!
But he's a data man. And my data is as inconclusive as day 1. Surprise, surprise.

Now I'm no doc, but I've had 4 months in and out of the hospital to educate myself on TM, and that included reading every scientific article available online, consulting multiple doctors, and asking infinite questions to my nurses, docs, caseworkers, and fellow TM'ers. (Sidebar: Anyone with a serious disease or disorder should be as informed as possible, because you WILL NEED TO be your own advocate.)

Though I'm a rare disease novice, I learned the psychological importance of having a plan in place as my uncle battled fatal brain cancer. The worst thing not to have when you're sick is a plan. Plans give direction, purpose, hope. Basically, a plan of action is synonymous with man's search for meaning. We need meaning to exist.

The Man with a Plan:
While my current Philadelphia neurologist (whom I adore), Dr. Schwartzman has given me a plan (which has changed as many times as my wardrobe), it was a plan none-the-less. The only glitch, and this is a major one and not Dr. S's fault by far, is Aetna Insurance's continuous denial of coverage of the plan's treatment (See: Why Insurance Companies (Aetna) are More Corrupt than the Mafia...a non-academic crime story posted 11.25.08).


THE DIAGNOS-LESS DIAGNOSIS, THE PLAN-LESS PLAN
Even though Dr. Pardo ordered every test he needed to confirm my diagnosis and reveal the big immunological picture that has risen the neuro body-snatching demons, and his clinical observations confirmed a "neurological issue that represented similarly to TM," he is still unwilling to give me a diagnosis.

While my symptoms and side effects clearly match only two neurological diseases: TM and MS, and TM can exist without supporting data and MS can not, Dr. Pardo is still contrary to verify what has been diagnosed by Dr. S, one of the other world's leading neurologists, and clinically observed by the Hopkins man himself.

Pardo's plan:
He still thinks "something is going on," wants me to make another trip to Hopkins to see their psychiatrist who specializes in MS and similar diseases, as well as their Rheumatologist, who will probably just look at the blood work like every other rheumatologist.

I know I'm sounding like a grouchy baby, but even I think I deserve a moment or two of bitching and whining.

Pardo's "further instructions" included a vague diagnosis of myelopathy (without defining what it is), an unidentified systemic disorder (perhaps Lupus, which can cause TM), and he inferred that my symptoms were related to depression. Depression! Even Dr. S, Dr. Marni, my friends and family, assure me that they would be surprised if I weren't depressed by a life-changing, debilitating, painful, prognosis-less disease. Even my mother's depressed because of my TM, and she doesn't even have it.

Pardo's big but (very loosely quoted):
I don't believe your current treatment plan is appropriate or working, and I am unwilling to offer any treatment plan.

My big but thought:
BUT TM has a very short window for best-case-recovery, which for most is only 90%. I have two months left to gain the majority of my recovery, and then a year and a half more to expect minimal changes. After that, I'm stuck. I'm running out of time.

Me:
If I don't have TM, how do you explain the incontinence, the vision loss, the cognitive problems, the neurogenic bladder?

Dr. Pardo:
I can't.

Action:
Phone consultation ends. After my sob-session and friend-buttress-convos, I researched myelopathy and was lead to articles on transverse myelitis. This article stated, "You may also hear the term myelopathy, which is a more general term for any disorder of the spinal cord."

Me:
Cop out.


So here are my lay responses:

My emotional/personal responses

1. I feel betrayed.
2. I think the doctor's oath should include, Do not make promises to patients that you can not keep.
3. I cannot rely on doctors.
4. I must be proactive.
5. Accept the gifts of emotional support from friends, family, and my new special friend.
6. Accept their offers of sharing the responsibilities of pursuing plan of action)
7. Don't let disappointment/illness affect my work. (I worked from home until 11PM last night)

My plan-of-action
(developed last night in collaboration with Marni (virtual doc/BF) and mom)

1. Explore every possible option.
   
2. Swallow my pride, return to John's Hopkins and see their psychiatrist and rheumatologist.
3. Get my current reheumatologist's opinion, Dr. Huppert, who is also magnificently treating my pain.
4. See neurological opthamologist at U of Penn Hospital (Pardo recommendation; appt. scheduled)
   
5. Schedule 3rd opinion by a new neurologist (at Penn?).
6. Wait for final decision from Aetna on IVIg treatment. Hope for the best.
7. Schedule appointment with hypnotist: quit smoking by 1.15.
   
8. Reschedule my appointment with Dr. Rozenzweig, an integrative medicine doctor, at The Healing Arts Center in Old City.
9. Work with Dr. R to explore Complementary Alternative Medicine (CAM) practitioners and treatments.
   
10. See Dr. S for my 1.22 appointment.
    
11. If by that appointment, IVIg treatment is not approved by Aetna, demand next possible treatment: chemo. (Note: Dr. S is against this treatment for women of child-bearing age)
    
12. Invest in hats, scarves, and perhaps a sexy red wig, if necessary.
13. Continue rehab at Magee.
    
14. If all else fails, go to Mayo Clinic.
    

And, like Schwartzman's plan-of-action, this too will probably be revised as much as a poem.


CONCLUSION-LESS CONCLUSION
Appreciate the orange reflection of this morning's sunrise painting my apartment walls. Be good to myself. Be patient (no pun intended). Savor my extended New Years vacation and the opportunity to share it with my mother (she arrives Wednesday). Get a mother-daughter-friend Tamar mani-pedi this week (they're on sale at Jean's Nails in the 1600 block of Spruce Street!). Delight in pain-free moments. Acknowledge my improvements. Accept my deterioration...as temporary. Meditate with positive intent. Breathe deeply into my spine (OT exercise). Vent as needed. Dress better than I feel. Be bright, therefore return to Diesel and buy those perfect ass-lifting, thigh-accentuating shiny teal pants. Attempt retail therapy moderation in favor of assigning income to CAM (after I buy those pants). Drink wine and vodka...separately and in moderation. Be unstoppable.