Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.
Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.
About 33,000 Americans are currently disabled as a result of this rare neurological disorder.
Not one person with TM will ever know their prognosis.
I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. sucks, but I still rock.


Wrap it Up...Or Not

It's Jan. 31 - the last day of the first month of a "new" year. It also marks my approximate entrance into my 6th month of living with Transverse Myelitis (TM), one of many factors that has made this long month feel even longer. But when you have TM, especially in the beginning, human time is irrelevant. Moments last hours, days disappear or drag on for years, and months are the timekeepers of recovery potential.

The two major moments in time for TM'ers, aside from its startling, horrifying onset, are months 6 and 48.

According to current research, maximal recovery occurs within the first 2-12 weeks following the first symptom. By 6 months, there's not much more recovery to expect. And at 2 years, you have reached your maximum potential. That's it. You're done. You're stuck.

With rare diseases, such as TM, (every person with TM is literally 1 in a million), there's only so much data on which to base definitive answers, so the experts use non-committal words like usually or may, but for the most part, every agrees on this timeline:

Recovery from transverse myelitis usually begins within 2 to 12 weeks of the onset of symptoms and may continue for up to 2 years. However, if there is no improvement within the first 3 to 6 months, significant recovery is unlikely.
Recovery from TM is highly variable among individuals. Approximately one-third of people with TM experience good to complete recovery, another third experience fair recovery, and the remaining third have poor recovery. Most improvement occurs within the first three to six months, although some gradual improvement can continue for up to several years.
Recovery may be absent, partial or complete and generally begins within one to three months. Significant recovery is unlikely if no improvement occurs by three months. Most patients with TM show good to fair recovery. One-third of those diagnosed make a good recovery, one-third have only a fair recovery and one-third show no recovery after the initial onset period.
Prognosis for complete recovery is generally poor. Recovery from transverse myelitis usually begins between weeks 2 and 12 following onset and may continue for up to 2 years in some patients, many of whom are left with considerable disabilities. Some patients show no signs of recovery whatsoever.[2]However, if treated early, some patients experience complete or near complete recovery.

NOTE: This is the only contradictory recovery statement that I have found. Who knew the Brits were such optimists?)
In transverse myelitis full recovery often occurs even if severe leg weakness has developed. This is because the myelin sheaths around axons can be partially reformed and also because the inflammation stuns quite a lo
t of surrounding normal spinal cord. As a comparison, the amount of permanent damage to the spinal cord is vastly less than after a traumatic injury to the spinal cord due to a motor vehicle accident. Recovery can take many months; however, the vast majority of people do improve significantly.
-Brain & Spine Foundation

So you can see why, in addition to the typical TM side effect of night sweats, my armpits are fountains, my hands are Slip 'n Slides, and my feet - let's just say I'm glad I bought extra socks when I could still afford it.

No matter how strong you are - mentally or physically - or how much recovery you've attained, these two judgment days are anticipated with fear, hope, or anxiety. If you're male, you might just stick with those three emotions. If you're female, you may experience 50 additional emotions per each one of your male counterparts.

Regardless of gender, deadlines are deadlines, and we can strive to meet or beat them, proving our competency, but unless you subscribe to quantum physics and believe you're living in an alternate universe (which I believe is a real possibility), our minds, bodies, emotions, and lives are still planted into this earth, which despite all the scientific revelations, still beholds many mysteries.

For some of us this "world is our oyster", and even if you have TM and you are anywhere from newly diagnosed to 30+-years into it, this cliche could still crack its slippery face and suck you in. It does for me, daily, sometimes hourly.

As much as I'd love to suck down a sampler plate and let its natural libidinous after-effects take control of my future - that's a one-night-only ticket, and they're just too damn tiny to fit the seemingly never-ending, convoluted, all-consuming calendar - which in my case is filled with myriad tasks, doc appointments, procedures, to do lists, diary notes (one of the means I use to combat my short-term memory), and project-related files (I love and highly recommend Entourage for managing one's life - medical or otherwise).

I wish I could be definitive. I wish my doctor could be too, but the disappointing truth is my oysters are rotting. With each hospital stay, follow-up visit, my doc's goal for my recovery decreases and my prognosis remains undefinable. It 's a rotten outlook, but it could be worse.

I could blame my TM status on Aetna's protracted denial of necessary treatment coverage, which I often do. I could blame it on my lifestyle (which, if you knew how boring I've become you'd know would only be a small contributor). I could blame it on stress, city-living, living in a city without family, falsified expectations and devastating let-downs, or capitalism.

I could blame it on a life of a series of traumas and loss, which as an ex-dancer and student of body-mind centering, I believe we suppress and carry these events in our body. I could blame it on Tom, Dick, and Harry. Hell, I could blame it on my devoted, would-sacrifice-anything-for-me, unconditional-loving mother. And boy, would that make me a miserable ass.

In one experiment, some participants were told that an individual was speeding home to hide an anniversary present from his parents, while other participants were told he was speeding home to hide cocaine from his parents. While speeding, he hit a slick surface and lost control of his car. When asked how much control the individual had over the accident, participants who believed he was driving home to hide drugs attributed a greater degree of control over the outcome to the individual, presumably due to their effort to validate the blame they attributed to a driver they perceived as morally deplorable. Alicke (2000) proposes that spontaneous evaluations of the sort described by Bargh and Chartrand (1999), likely lead individuals to engage in such “blame validation,”—altering the evidential standards for blame, changing judgments of causation and control, and engaging in biased searches for evidence in favor of their judgment.
-From: Ripple Effects in Memory: Judgments of Moral Blame Can Distort Memory for Events

I could capitalize on the healing prowess of hope and gratitude. I could focus on my improvements (although relatively few and minimal....miss negative emerges), rather than my losses (Mom's sage advice). I could make a "benefits list" of a future lifetime of disability and pain. But I won't, because I can't yet bring myself to fully accept my current disabilities let alone a future of them.

So, I should be thankful for disposable washcloths, without which "bad neuro day" = stinky Melanie, because due to point above, I still haven't installed support bars in my shower.

I could be proactive and sign up for a mindfulness/meditation/stress management class (which I did) that could not only affect my prognosis, but could change my life entirely. I could publicly thank my urologist, Dr. Melanie Amster, for recommending the class, listening with compassion, and waiving my future co-pays. And prior to that, it was her encouragement that resulted in a 6-day wait for an appointment with an I-won't-stop-until-you're-better neurologist who has a 4-year waiting list (long story).

There are actually a lot of positive happenings that have evolved from my illness, as well as fateful life choices that have led to a greater ability to manage my new life. And if I weren't stoned on my night meds, I'd list them all, such as reconnecting or becoming closer to family, or my short-term marriage that provided me with the health insurance I lived without for 8 years, or my procrastinated-yet-dedicated decision to quit smoking by hypnosis .

Or I could go back even further in time...

As I'm writing this post, I'm becoming more enlightened. And that fits neatly into the above section. The Dalai Lama would be proud.

Illness leads to conflict - internal and external, physical and psychological, medical and financial. And we can choose to remain in an eternal state of conflict, which probably results in non-result, or we or our bodies or our minds or our negotiators or our attorneys or our friends and family members, or the congruence of any of those can work towards resolving these conflicts. Without which, there is no healing. Although I'm no mathematician, I'm making some mental if/then equations in real time:

Equation Set 1 (3 variables)

Variable A
sickness = conflict (+ resolution attempt(s) = healing (+/- cure))
= enlightenment


Variable B
sickness = conflict ((+ resolution attempt(s) = stagnancy) recovery)
= enlightenment


Variable C
sickness = conflict (+ resolution attempt(s) = deterioration)
= enlightenment

Equation Set 2 (1 variable)

sickness = conflictt (- action)
≠ enlightenment

Assuming my logic dings the truth bell, then sickness plus action offers more opportunities for growth. While there are many paths to enlightenment, many of which are less painful or threatening than illness, all of them require action.

Time to Choose
If I had to choose the greatest benefit of illness, it would be the opportunity for this personal or spiritual growth. No matter what religious belief systems you abide by or reject, if you see the glass half empty or half full, or you're so miserable that you just don't give a damn, I still can't imagine a person in any of those categories not appreciating the opportunity (if it presents itself) to become a more enlightened human being. But, that's just the conjecture of a multimedia artist sicko (me) of moderate to minimal success who doesn't even have her own Wikipedia entry. So I'm turning to Internet research and offering quotes from heavier hitters throughout time to back me up:

“O Holy Spirit, descend plentifully into my heart. Enlighten the dark corners of this neglected dwelling and scatter there Thy cheerful beams.”

- Saint Augustine (354-430): Ancient Roman Christian Theologian and Bishop of Hippo from 396 to 430. One of the Latin Fathers of the Church.)

"I have always fought for ideas -

until I learned that it isn't ideas but grief, struggle, and flashes of vision which enlighten. -Margaret Anderson (1886 - 1973): flamboyantly bold American founder, editor, and publisher of The Little Review.

“Enlighten the people generally, and tyranny and oppressions of body and mind will vanish like evil spirits at the dawn of day.”

- Thomas Jefferson (1762-1826): 3rd US President (1801-09). Author of the Declaration of Independence.

“A dramatic experience concerned with the mundane may inform but it cannot release; and one concerned essentially with the aesthetic politics of its creators may divert or anger, but it cannot enlighten.”

-David Mamet (1947- ): Prolific American playwright, essayist, author, screen writer, and director.

Balancing Act
For those of us struggling in that ineffable space between positive and negative, I think the yin/yang balance theory is not only appropriate but integral.

Yin yang transform each other
Like an undertow in the ocean, every advance is complemented by a retreat, and every rise transforms into a fall. Thus, a seed will sprout from the earth and grow upwards towards the sky - an intrinsically yang movement. Then when it reaches its full height, it will begin to weaken, and eventually will fall back to the earth in decay - an intrinsically yin movement. Yin always contains the potential for yang, and yang for yin.
Yin-yang are balanced
Yin-yang is a dynamic equilibrium. Because they arise together they are always equal: if one disappears, the other must disappear as well, leaving emptiness. This is rarely immediately apparent, though, because yang elements are clear and obvious while yin elements are hidden and subtle.
-From Wikipedia

I had no idea when I started writing this post, that this is where I'd arrive - seeking, or rather finding, calmness, acceptance, a state of balance. Ironically, in my past-life's work as a dancer/choreographer/director, I was in constant pursuit of balance, that singular place where the body supports itself with absolute ease - unhindered, yet propped by the mind, bones, and breath.

When a dancer, artist or athlete finds that Zen-Spot, she has most likely conquered any associated fear and is free to move (or stand) beyond herself, beyond pre-existing limitations, beyond the confines of the body itself.

Even the most confident person - athlete or couch potato, single or partnered, sick or healthy - could find this state of balance frightening. One misstep, a single distraction, or an outside force could send us falling right back on our asses. So maybe to achieve balance, we need to overcome aversions to disappointment and pain, basically any fear of failure.

I have failed and fallen (literally and figuratively) over and over again because of lack of balance. This realization is like a life-threatening diagnosis - tossing me into temporary shock. I'm seeing the significance of balance, or lack thereof, within a lifetime of whopperjawed experiences cartwheeling across the avenue of my blurry eyes - my marriage, my first business venture, jobs, friendships. Wow. I need a moment to take all of this in.

Moment taken. Moving Forward. Time to close.
This post is my first online journey with you. I set out to give a simple update - to summarize the successes, disappointments, setbacks, improvements, and plans for months five and six of my TM recovery.

Instead, writing and rambling over the past seven hours, I think I've arrived at the most important discovery of my life, or at least the most integral discovery to my recovery process.

In moving from January to February, I have to let go of the medical deadlines and release my self-imposed fear of recovery failure. These kinds of thoughts are as disabling as my TM disabilities, and if I have any chance of recovery, I need to shift my focus from disease state to ease state, a life of balance.

I'm not sure yet what this means for sickness, or how to accomplish it. My body once understood balance intrinsically, but that body doesn't exist today, nor will it ever again. One doesn't have to be sick to endure that either; aging alone instigates these irreversable changes.

While, February may be my most challenging month yet, seven hours into writing this, I still haven't arrived at the details of that discussion, so I'll leave it at that. Perhaps the details are not what will or should matter to me.

Rather than face the challenges of TM, I'm thinking I should take on a different kind of challenge, a balance challenge, and allow those unavoidable, unpleasant, undesirable, un-, un-, un-s to do their own nasty things, while I do mine.


Breaking (Up) is Necessary to Do: A Series

Break glasses, hearts, arms, toys, the bank,
stupid words like good and bad. Go o(d)d.
ad(dition minus conclusion.)
an) ad (for .) Broken bodies,

not just parts, the whole
damn lot: laptops, coffee pots, clutches, memories -
break twice as directed(?) with power
tools. Break rules. Break time. Break out.
Breakdance. See it. Break it. Break
what's broken
twice as directed.

How to leave home
without keys? Never
come home again.

Break up with the sun, sight, the sense
of sensation. Knowledge is too big
a word. Break it. Future is too full
of itself. So are yesterday and today.

I want to say: fuck it all and go to hell.
I won't say: fuck it all and go to hell.
I say: fuck it all and go to hell
I don't believe; I've met
believers who believe I am in hell,
I am headed toward hell. I am hell

on wheels constructed of assistive
technology, a word not recognized,
a person not there, not designed, not home,
therefore not breakable.



It took me a while to finish this. I added the poem today, but the following (written in the present tense was started almost 2 weeks ago).

Another Author's Note & Disclaimer (I so want to write Notlaimer):
Today (1.18.09) will be day 4 of my IVIg treatment. Though I'm feeling some improvement already (internal sigh), vision impairment is still a nag. But despite the absof***inglutely annoyance of writing "in the dark", this post has been on my mind for days, which in visual terms is a pretty dark place anyway. At least the way, I imagine it. So now I need to break these thoughts from there. If I say more, I'll give too much away.

It's also 4:30AM, 31/2 hours after taking my night meds cocktail (a colorful and occasionally effective montage of narcotics), 4 days since my last shower (my port has been accessed), and I'm feeling a little vain. So with these two paragraphs combined, plus a dash of writerly stubbornness, a video recording of me babbling through my thoughts won't do. So I'm taking a chance here with digit(al) muscle memory. As always, please forgive me for "breaking up" with my perfectionist, perfectly proofed ways...and for carrying my metaphors on for way too long.

Even when we're healthy, independent, and our lives are full of naive potential, breaking up is hard to do. Remember your first love and how you looked forward to his (or her) calls and that long wait to Friday night when you could "go out with your friends" and sneak away from the pack to a quiet place where your breath turned white while you experimented with the flexibility of your tongue and lips dancing with another? and then the days and days of pillow-sobbing that followed the inevitable end?

Or, going back even further in time, how you loved your yellow Tonka truck more than any other toy, even the remote-controlled speed racer? and the day paint began to chip away and the eventual dismantling of its parts that made the whole thing so damn fun? and how when the first already dangling wheel broke off for good and you could no longer control your feelings, and you cried as though the whole world was against you?

Just like sickness, these losses continue through our lives to have a long list of side effects - tears being just one of the painful or embarrassing traits. While that list may be plentiful and weigh heavier on the negative, as adults, by now we should know it would do us more benefit to focus on the positive side effects.

But let's be honest with ourselves. Do most of us see the plus, when the minus is so much more emotionally and physically oppressive?

Probably not.

Even in my happiest moments, I waffle here. Do you? Why is it that we gravitate our emotions in that downward direction again and again?

BREAKING DOWN THE CLICHE: from Tonka Trucks to Playthings

Mostly, when we think of that horrific phrase, break up, we either think of the end of love or that timeless song (The Carpenters aside, you wouldn't believe how many ear-breaking covers I could have chosen from YouTube).

But it's not just relationships - with lovers, spouses or playthings (toys, so to speak), a shattered sentimental mug or burned-down home, the image of our body as whole after losing a limb or becoming disabled in any way from any cause - that break us into pieces of our once puzzle-completed selves. Forced to rebuild, feeling as though the task is greater and more dangerous that erecting a bridge from scratch, these all qualify as "life sucks" phases of our lives.

Most of these break ups are forced upon us. These unsolicited surprises impose uninvited challenges and change.

Ironically, most of us invite a challenge, even crave it - in our jobs these c-words make the day go by faster and give hope for promotion and pay raises. For athletes, like I once was, it presents an opportunity to rise to the top; to give our audiences a more satisfying performance; to receive more praise, or trophies, and medals to show off to our friends.

For the humbler athlete, the gratification of challenge-induced improvement, which comes from within, and our teachers, directors, or mentors - is not only enough in itself, but it's the basic matter that completes our identity.


I could have just come out and written this in the intro, but that would ruin the suspense. (You were reading with anticipation...weren't you?...Just say
yes...Thank you.)

So, here it is, THE POINT OF IT ALL as it exists in my head right now (it will evolve, devolve, deform, and reform every day):

Now that I'm sick, I mean really sick - disabled, debilitated - I better get my broken ass in gear and break up with myself. Medically, physically, I can never be Old Melanie. And New Melanie is as impermanent as most of our incomes.

I've been working through this idea before the birth of this blog: before the onset of my Transverse Myelitis (TM); my divorce; the deaths of my father, uncle, and friends; my first dance injury and my last performance; the loss of my house, a stolen wallet, etc., etc., etc.

Wait! This isn't a "focus on the negative-oy ve-what's wrong with me-I'm so miserable-life is unbearable-self pitying" self-help column. And it's not just about me, me, me.

I feel the need to probe - and it's not revenge against all the probing inflicted upon me.

There are so many emotional, physical, spiritual, medical, and psychological effects that this catalyst of "breaking up" (in all its incarnations) imparts on our lives. If I don't explore this - if I don't discover what's worth breaking - I think I'll screw myself out of maximal recovery. I think we'll all screw ourselves out of our maximal everything.

How am I going to do this? My plan is to
research, scrutinize, and celebrate this subject's impact on our lives in real- and remembered-time: present, past and future. The break-up themes will be informed by interviews with myself (I'm easy to get in touch with), other neuro-rare-chronic-illness (NRCI) friends and strangers, as well as NRCI-impaired-free people.

Obviously, by the title, you've probably figured out that this is the first of many posts to come. (Here I go again, over-promising. But I really mean it. Really, I do.)


Cognitive Goofball: Anecdotes from the Underbelly of TM

NOTE: Some names have been changed or omitted to protect the innocent.


Neurologists Practice's Packed, Dining-Hall-Sized Waiting Room in Downtown Medical High-rise
(Imagine lunchtime at the only senior center in town.)

Front Desk Nurse (FDN): Middle-aged African-American woman dressed in pastel scrubs, with a hard here's-the-deal-so-deal-with-it personality that permeates all office tasks. It's unclear to anyone in the waiting room what her "job" is, but she is always "busy."

Melanie (Mel):
Vision, memory, and walking-impaired, full-body spasming, cane-toting 33-year-old neuro patient with rare disorder. Always late due to what-did-I-forget-repeat-as-she-leaves-her-apartment-syndrome, she is anxious for "answers" during her first follow-up with her (love-hate-love relationship of a) genius doctor.

Other patient: Tall guy. Mid-forties. Button-down shirt.

Extras: About 35 neuro patients, family members, and spouses, mostly in their late forties to eighties.



(standing behind front desk; booming, agitated voice)

Who signed themselves in as Dr. Schwartzmanderin to see Dr. Schwartzmanderin?

All eyes go to FDN. Waiting room extras look for the idiot culprit.
MEL, knowing she had just signed in to see Dr. Schwartzmanderin after OTHER PATIENT, shouts back across the room while looking toward Other Patient who seems smugly non-neuro.

Do you have Melanie Miller on the list?

(looking at her clipboard)

(looking straight at FDN, with complete facetiousness, while laughing)
Thanks for announcing my cognitive issues to the entire waiting room.

MEL looks to extras for ha-ha camaraderie. No go.

You need to come up here and fix your name.

MEL picks up her cane, pushes herself up from her comfy office chair and limps 15 feet to front desk. She looks for the cognitive faux pas, crosses out Dr. Schwartzmanderin's (under patient name column only) and writes in her own above his, walks back to her seat, and drops into the chair. She sets down her cane, which falls to the floor, as usual.

Melanie Miller

(picking up her fallen cane)

You can come back now.



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Final Results:

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

Pictured Above: Accessed portacath (not mine)

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

Good morning or good night,


IVIg is On...

Disclaimer: The author is too tired to spell-check, proofread, or use big words.

Just a very quick update to let you know that I started IVIg home treatment today (Thurs).

Even though, the treatment set my winter hibernation into motion (I slept ALL day), I'm still too exhausted to write anything interesting or to ramble on about the ongoing ineptitude and corruption of the medical I won't.

OK. I can't help myself...
Four over-nighted boxes arrived this AM with all supplies, including the IVIg, which needs to be refrigerated, and lots of other med junk that apparently I'm financially responsible for once FedEx says goodbye.

How does Aetna expect a physically-visually-among-other-things-challenged person to maneuver these precious boxes (which currently overtake my 475 square foot apartment and refrigerator), open them, and figure out what needs refrigeration and what doesn't? It may be perfectly clear, but when you're told you'll be charged tens of thousands of dollars, the obvious answer isn't thorough enough.

Luckily, I had Day 1 Help from a friend, so I didn't have to worry. But really? Come on? Imagine all the other sickly loners like me, who didn't receive a gracious offer like me.

The facts and only the facts
  • IVIg treatment will continue for 4 more consecutive days (Thurs - Mon).
  • I was told that each infusion lasts about 3-4 hours, but I'm not sure because I was sleeping when the nurse left.
  • Day 1 nurse is also responsible for organizing all the parts and props and ordering what's absent...luckily the only missing prop was the waist carrier for the bag and monitor, i.e., Day 1 is more like 4-6 hours...I think.
  • My script is for 1 year of 5-day infusion treatment every 4 weeks.
  • No alcohol allowed. (I'm holding my fingers from adding any personal response.)
  • Today's infusion nurse wouldn't allow any pics or videos, so you've been spared seeing my port accessed.
  • I'm realizing why I let go of my "just because I feel like shit on the inside doesn't mean I have to look like shit on the outside mantra" during my first (and much more intense) round of IVIg in hospital. Besides the fact that I can't take a shower or bath (new pics to come...when I an cull enough energy to hit "click") while my port is accessed, I can't imagine having the stamina or inclination to be bothered.
  • I'm going back to sleep now with a minor headache and all the other TM crap, i.e., no improvement yet, but that would be 1 in a million (NOTE: made up statistic).


Mel's Aetna Battle in the News...Kind of

My battle with Aetna has made it into a recent blog post, Advocacy for Patients with Chronic Illness: Be an Advocate; Save a Life, written by my pro-bono attorney, Jennifer Jaff. In it, she talks candidly about her experience (from both a legal and emotional perspective) winning my case against Aetna.

It's a quick read (unlike me, she knows how to get to the point).

I recommend reading the comments as well, which are authored by my mother and myself, as well as strangers.

So, if you go there first, please come back and read on (I've taken Jennifer's cue and employed brevity, I promise)...

Without Jennifer and her tireless work on my behalf, things were looking and feeling dire, and this is what I had to look forward to:

  1. I was about to start a much more aggressive and dangerous treatment path, which included immunosuppresive drugs (low-dose chemo), a 4th surgery, a 3rd round of plasmapharesis, and 1 more month "walking" around unshowered with udders protruding from my sternum. Sexy, huh?
  2. My TM and its myriad symptoms could have continued its progression, and further decline was imminent.
  3. I would have had to battle Aetna on my own, without the legal know-how, and you can probably guess how that would have ended.
  4. The realistic probability of a lifetime of disability and pain.

While number 4 is not entirely ruled out yet, its probability has just dropped like the stock market. And number 1 is still an only-if-absolutely-necessary back-up plan supplanted into the deep and unreachable gooey parts of my brain that no one, including bad ass self, want to go near.

BUT thanks to Jennifer, my family and I are able to refocus on the positive: my mother doesn't have to worry (quite so much), I have renewed hope in my own recovery, and I start treatment this week.

I'm still pissed as hell at Aetna that I'm 3-months behind in my potential recovery, which only has a 6-month window for maximum results. But I'm momentarily basking in the glory of the WE-BEAT-AETNA-WIN-NAH-NAH-NAHNAH-NAH. (I'm a really mature 33-year old.)

So, as we neuro-ites say...
"YAY" Jennifer.

And as I say (and have said)...
Please help support the work of Advocacy for Patients with Chronic Illness, Inc., Jennifer's company, with a donation of any amount (the more, the better :)). Without the support of people like you, I wouldn't have even had the opportunity to write this post. So give it up for individuals, like Jennifer, who are making a difference 24/7/365.

Enough About Me...My Neuro Friend Needs Your Support

When you're hospitalized for weeks, eventually you make friends. It's like being a guest artist for a month in Ketchikan, Alaska (you're all relating right now I'm sure). In Ketchikan, which has a population of 8,500 on a good day, you never befriend the tourists. What's the point? And if you're in Ketchikan for more than a week, no one considers you a tourist. And while I was there, I made friends with the people whose home I was living in, the artists and directors I worked with, and a few locals.

Four years later, I still consider a couple of those people friends.

The hospital is no different. I made friends with other Hahnemann Hospital non-tourists: nurses, security guards, Lou, Al, Clark, and Muhammed from the smokers area, and Lynn, Danielle and Judy from the neuro floor. These people - especially my fellow neuro-ites - made being hospitalized less sickly and more fun. Don't get me wrong, it still sucked.

But like my Ketchikan buddies, some of these new partners-in-sickliness have staying power.

Last week, I asked you to help Lynn. Today, I'm asking you to help my 26-year-old girlfriend Judy Hopkins.

Judy & Mel hangin' at Hahnemann...for weeks
As a fellow-short-term-memory-in-constant-pain-sleepless-rare-neuro-disease-battler, Judy has become one of my most enthusiastic rooters-on and a great friend. And if you had the opportunity (which if you didn't you will once I get the chance to download the documentary footage from the hospital), we're also great entertainment (imagine two people who can't remember what they said 30 seconds ago having a conversation until's right out of a Beckett novel).

If you help, maybe we'll take our shtick on the road.

Unlike my last-minute stay of execution from Aetna, the expenses of Judy's experimental treatments (which are the last possibility for her to survive an atrocious illness and live like a human being) still are not covered by any insurance.

To give you an example of the financial and emotional costs of battling a rare disease and its affect an entire family, just hours before Aetna overturned their denial of my treatment coverage, my single, middle-class mother was about to take out a home equity loan to cover the costs of buying IVIg and paying for a home health nurse to administer it - which could have reached 100s of thousands of dollars. And that's just part of the story.

It doesn't matter if you have insurance or not
With or without insurance coverage, being chronically sick is expensive. And when the insurance you pay for DENIES COVERAGE OF NECESSARY TREATMENT, it's like being forced at gunpoint to buy 50 Mercedes SLR McClarens when you're homeless.

I'll let Judy summarize her story in her own words:

Hey guys,

For those of you that don't know, one year ago I went to Germany for treatment for RSD (Reflex Sympathetic Dystrophy), also known as CRPS (Complex Regional Pain Syndrome) a chronic neuropathic pain disease that I've been battling for the last ten years. The treatment is known as a Ketamine coma. Because of Staff Infection Pneumonia I was in a coma and on life support for three weeks, but awoke in complete remission. Unfortunately, it didn't last and I relapsed a month later.

Over the last year, the disease spread, just like it had for the nine years previous to the first coma. Unlike previously, this time it also went internal and infiltrated my organs and affected my digestive and respiratory systems and eventually spread into my brain. I was unable to eat and hold my food down and was having more and more difficulty breathing. I was slowly losing certain brain function and therefore, became the fifth person ever to have the coma done a second time, which was done in December.

As a result of how dangerous this treatment is, it is only available in Germany and Mexico and is not covered by any insurance. Unfortunately, because of how progressed and severe my case was the majority of treatments I got and continue to get in the US, are considered experimental and are not covered by insurance either. As a result of this, friends of our family are hosting a fundraiser for me and my parents to offset some of those expenses...If any of you are planning on attending, it would be helpful to purchase your tickets ahead of time.

Thanks and Happy New Year,

  1. Attend the fundraiser (see info below)
  2. Send a check (any amount!)
  3. Donate an auction item
  4. Volunteer to help the day of the fundraiser
fundraiser info
WHERE: Brickwall Tavern and Dining Room, 522 Cookman Ave., Asbury Park
Show map of 522 COOKMAN AVE, ASBURY PARK, NJ 07712
WHEN: January 25, 5:00-9:00 P.M.
WHAT: Free drink, buffet, Chinese Auction
HOW MUCH: $25/per ticket
HOW: Call 732-531-2574. Reserve now.

and if you want to take it one-step further:
  1. Forward this post to all your contacts and urge them to take one of the easy-as-pie steps above.
  2. Become a rare disease and/or disability activist.
  3. Write letters to your local, state, and national government officials about the corruption of insurance companies, the need for full and timely coverage, and the eradication of the erisa act.
  4. Sign petitions to support people with disabilities and rare/chronic diseases.
  5. Or, if you're lazy or not interested, just send a damn check of any amount to one of the many large and small patient advocacy organizations that are lobbying, letter-writing, donating their time and services, and making a difference one baby (or gimpy) step at a time. (I recommend, Advocacy for Patients with Chronic Illness, Inc. and IG Living, two organizations that have made a huge difference in my quality of life.)


We Won!: An Aetna Sucks Update with a Fairytale Ending

Simply a very quick update...More ranting and raving later.

Thanks to the non-stop diligence of my pro-bono attorney, Jennifer Jaff (and others who will/have receive mention in future/past posts), Aetna has overturned their decision to deny IVIg treatment. After 3 months of denials and appeals, I can now get the treatment I need - whenever, wherever, and however necessary - to give me a chance at recovery.

And Jennifer got them to make this decision prior to our scheduled hearing this Wednesday. She's amazing.

I could spend hours thanking all the people who made this happen and days cursing all the institutions that made this ridiculous and corrupt battle necessary, but this is just an update I'm going to keep it as such:

Friday 1/9:
  • Aetna - overturns denial of treatment
Monday 1/12:
  • Me - Blood work to check IGA levels (?) or something like that
Wed/Thurs-? 1/14ish:
  • Me + Home Nurse - Begin IVIg treatment - 5 days
This weekend 1/9-1/11:
  • Relax, recuperate from stress of last few weeks and def last 48 hours, celebrate - wine, vodka, friends, give thanks, drink lots of water, prepare for treatment.

With gratitude, relief, and restored hope,



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
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.


Site Update: The first poll is live

Site Update is a new posting series on Neuro Detour.


No politics. No personal ramblings. No philosophical meanderings. Just a simple note or video to say, hey, check out this new feature.

In the current plan in my head, most of these new features will make Neuro Detour more interactive, give you more of a voice, (selfishly) help me get to know you better, or make it more user-friendly. Of course, this takes time and energy - two basic elements of normal living that can be evasive or downright non-existent to a person fighting transverse myelitis, working a full-time job, and/or attempting (a bit of) a social life. (I'm extending this list to all for self-implantation.)

But this is me, and it's 4:12 AM, and I've taken my night meds cocktail (which now includes generous amounts of oxycodone, a sleeping pill, gabropentin, clonipin, cholesterol meds, and a glass (or 2) of wine), I can't see the computer screen (my vision is going now too...more on that soon), and I have a big day tomorrow for which I should be getting some sleep. So basically, expect this to be the first of many (or some...REMINDER TO SELF: a person with TM shouldn't overcommit) site update announcements. (Sidebar: Oops. I got personal. Yet another broken promise...I'm as bad as most doctors.)

1. I've added a reader's poll to the right rail of the blog (just under "Subscribe to Neuro Detour). Look for the heading:

"New Poll: What made you interested in checking out Neuro Detour? (select all that apply)

It's a little bit serious, a little bit silly, just like me. So, please humor me or yourself, take the poll, wait for the responses to roll in, and compare them to yours. It's not just about humor; I really want to know about you. So, please be honest.

2. You can now get to Neuro Detour 2 ways:
a. Same old, or

That's it for now.


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.


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

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.

In Pictures

Please Note: Some photos may contain partial nudity or depictions of medical procedures. Though I am in many of these photos, my reason for sharing these personal photos is to promote awareness, understanding, and advocacy for people with TM and other rare diseases.
To play the slide show, click the big play button in the center of the screen, then the small one in the bottom left corner. Click here for more advanced viewing instructions, and select "Help."

Twittering Mel

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