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. Yeah...life sucks, but I still rock.
At 10:45 AM, after numerous un-returned phone calls, I made my last and final call, where I must admit, I got a little bitchy. After all, I didn't know if I could drink my morning coffee, take my meds, have a sip of water, or eat anything (which with my appetite I could care less about, but it's the principle!).
As it turns out, my doc just temporarily forgot how stubbornly independent I am, and he wanted me admitted because I'm single and live alone. How's that for rubbing it in?!
The good news is my OUT-PATIENT surgery to re-implant my permacath and portacath is tomorrow, and I begin OUT-PATIENT plasmapharesis Thursday.
So you know where to find me for the next 3 weeks - either sleeping thru plasmapharesis on the apharesis floor, or sleeping on my couch after the plasmapharesis. For those of you that haven't experienced plasmapharesis or never heard of it, look it up. Just kidding.
Basically, it doesn't matter how big or strong you are, this amazing procedure knocks you the f**k out. And it leaves you stranded without an immune system, which if you're screwed up enough to need plasmapharesis, it usually means you're better off without your own immune system, because it's a bad, nasty, recalcitrant, serial killer of an immune system that must be discarded as biohazardous substance immediately and forever.
PS That's not me in the picture. And even though it may or may not be degrading, salacious, or inappropriate to some, I thought it would grab your attention. After all, it did mine. Think of it as a little gift from me to you for causing you any more worry than I already have. Don't thank me. I'm just, ya know, generous like dat.
But considering that I live in a fantasy world called Mel Land, where rights are wrongs, and wrongs are rights, and left is the only political option, and any day of importance - whether heartbreaking, backbreaking, lifebreaking, or just fucking shitty - is reason to celebrate, why the hell shouldn't I celebrate. After all, I've survived (for the most part) one of the shittiest years of my life. And who knows where next year will land on the shit meter?
Breaking news: Just got a call from Dr. Schwartzmann's office. It's back to the hospital I go - 2 more weeks for inpatient plasmapharesis and who knows what else; starting off with surgery to place the permacath and possibly the portacath too.
Now I'm questioning my own determination to celebrate my 2nd year of survival. Because at this moment, I'm crushed. I just want to be free.
I’d like to give you that special gift that keeps you on your toes (for those who can stand that is), or erect in your wheel chair, or upright in your bed. I’m about to take you on a journey – not to the rickety, run down land of scalpels and 4AM vitals – there’s so much more to the sicko life than that. This journey is for everyone.
It’s July, my adored birthday month (I know it's September, just go with it). The afternoon sun is so overbearing, my plants are cowering while I sit in front of my computer in my underwear. (When you are a professional sicko, you lose all modesty.) Today is July 28 (same thing...use your imagination!), the day before my birthday; the day before I enter my mid-30’s.
This will be my first birthday as a neuro-sicko-glamour-gimpette.
About a decade ago, I began celebrating my birthday week. Five years ago, I extended that to the entire month. This self-involved celebration only requires that I celebrate myself in some way each day. Not only is this practice a healthy alternative to aging anxiety, it takes the pressure off the “big day” for you, your friends, and your family.
Healthy or sick, even if we don’t recognize it, we are hard on ourselves – pushing our bodies and minds to their max: to be thin or get a raise or keep our job (in this economy, especially) or to be the best parent or the top student of the class or the prettiest woman or hottest guy on match.com, e-harmony, or whatever mate-finder Web site you fancy.
Self-destructive behavior like this is prohibited during the birthday month.
In the birthday month, you celebrate your achievements (even if you’re a total loser, moron, or derelict by society’s standards) – the positivity of your existence, your family, your friends, your health, however many dollars are in your checking account, your best feature, your biggest adventure, the best kiss you ever had, the smartest decision you’ve ever made. You indulge in simple, available pleasures like a bubble bath, a home-cooked meal – just for yourself. You buy yourself a new pair of sexy lingerie or briefs that show off your package – even if you have to charge it. You treat yourself the way you want others to treat you.
Those petite celebrations are seeds for growth. Take them with you, water them, talk to them, and allow your next birthday month to include the happier, healthier, more thoughtful you.
Kim, a homecare therapist visits me weekly. For the most part, I am homebound. As I enter the 11th month of my battle with Transverse Myelitis, a rare and incurable neurological disorder, I tell Kim that I don’t feel like celebrating my birthday this year.
Ms. Fearless, moi, actually fears the entire month of July. Bereft of self-involved, self-indulgent, self-aggrandizing, self-sufficient, self-satisfying celebration, I am tired. I don’t want people to see me. I don’t want to celebrate my shit life. I don’t like my steroid face. Blah, blah, blah. Complain, bitch, moan.
VOICE IN HEAD:
Come on Melanie, get over yourself. You’re not the only person suffering, and you’re certainly not the sickest person on this planet.
Since September ‘08, I have been on steroids. I was tapering off of them in my birthday month – finally something to celebrate – no more Alvin and the Chipmunks cheeks, time to cook up those blowfish veil, pop pop goes the balloon face.
Soon, I would have cheekbones again! And maybe my skin would even be zit-free. Absolute glory! My ego is completely satiated.
Note: My face is still not zit-free, and I am still on steroids.
The next day, I relapsed - spending a 5-day so-called holiday weekend on the couch in excruciating pain from migraine to baby toe. Until the IV Steroids could be delivered – 1000mg of Solumedrol infused through my portacath for five days – I existed in a state of delirium with a fully loaded semi driving back and forth over my body 24/7.
I never knew such pain existed.
I have plenty of pain pills: oxycontin and oxycodone. These glorious, mute, little friends give me my quality of life. But the relapse was even stronger than the oxy twins could bear.
VOICE IN HEAD:
Poor, miserable me.
And if you’ve ever been on high-dose steroids, you know I’m not joking. Mood swings. Tears and fits. Outer body experiences. You are lost in the valleys of your newly remodeled fluid-retaining face, fingers, feet, ankles, and the inner tube around the section of your body that used to be referred to as a waist – a damn good trim and slim waist (self interjecting).
So here’s the big question:
What the F**K do I have to celebrate?
And a Poor Excuse for an Answer:
Eventually, my hapless grin takes over, and I find shattered pieces of happiness, a giggle, a sunrise so beautiful I want it to swallow me and take me to the land of light and color. Lies. All Lies.
And then there’s reality…Question:
How the hell does any celebration happen under these circumstances?
VOICE IN HEAD Answer:
It doesn’t. So make it happen.
Stop whining, arrest your self-centered bitching, blow your nose, take a shower, brush your teeth, get off your ass and do something that matters. Do something that’s meaningful to you. Just do.
Whether it’s a birthday, the solstice, a pagan or religious holiday, the week of your period, or your anniversary, you have the power to turn that fleeting moment into a grand occasion. And stick to it damn it.
Considering my unexpected relapse, I extended my birthday month into August as well. However, after the first days of celebration, I was back in the hospital. This time I was imprisoned for almost a 3-week stay of myriad adventures. But that’s over and done with. Right now, I need to go and celebrate the rain.
So, as I approach my 1 year anniversary of living with, accepting, or rather fighting (under normal circumstances I'm a lover not a fighter) the oft embarrassing, disabling, Richter scale breaking physical and mental side effects that accompany transverse myelitis (TM), I have been bestowed with yet another, but much more popular neurological disorder - Multiple Sclerosis (MS).
Unlike TM, MS has received wide support, in-depth research, and outstanding public awareness. Compared with the 30,000 Americans living with TM, MS claims 400,000. Quite a difference. So, yay, not only am I "1 in a million," but I'm finally hanging with the cool kids. It's hip to be neuro sick. Jealous?
I'm also joining the familial roster of 2 cousins with MS. Don't you love fitting in? I'm so like all about it, ya know.
In the 6 weeks since diagnosis, I've begun taking Copaxone®, a daily self-injection MS drug. I always knew that shooting up was cool. I'm tuff like dat. (Y'all better have a sense of humor, or I'm going to be in a lot more trouble than just the silent wrath of a couple angry neuro disorders.)
Every morning, I give myself a shot, and I've become such a pro, I can even IM on Facebook and self-inject at the same time. Except yesterday, when I was totally focused on my injection site, I screwed up and shot right into a blood vessel. Oh, the gore!
Copaxone is supposed to have the fewest side effects of all MS meds. But I'm experiencing a doozy of one (and a just a wooshy of another). Aside from the protracted bee sting lovin' feeling that follows each shot, the queasiness lasts about an hour. But the anxiety is simply outrageous and offensive. How dare this drug play with my emotions! Within an hour of taking the shot, I'm ADHD to the 100th power, as sensitive as a wallflower, and as unproductive as Paris Hilton (tho if she does her own makeup, she may have 1 up on me).
THIS ISN'T ME!!!!!!!!!!!!!!!!! - not even the new TM me vs. the mostly carefree dancing down the aisles old me.
No one likes a person on edge, an over-sensitive misconstruer, or a jittery MS junky that stands out like a man covered with glitter at a church service. So what am I to do?
My mother thinks I'm angry at her. Friends are finding me aloof or unpredictable. And add nervousness to the anxiety when dealing with male-female communication in the digital age. Oh, the pain of being so strange!
I can start by ridding my body of glitter, but that won't take me as far vanilla as I need to go. But I know the drill:
Step 1, call the doc.
Step 2, wait for the doc to call back.
Step 3, do what he tells me to do:
- a. nothing "it's all part of it"
- b. "stop the meds immediately"
- c. (and I hope it's this one) take 3 Xanax and call me in the morning for 100 more.
You may be thinking I've abandoned Neuro Detour. I haven't. In fact, I'm ready to expand it's content. (More on this later.)
I haven't written in more than 1 month because I haven't been home for 5 weeks. A few days after my last post, I had my 2nd relapse in 1 month - head to toe pain...as though a semi truck was driving back and forth over my entire body and delirium (although I thought I was perfectly lucid) as well. Note: Don't try this at home.
FIRST...BIG BAD NEWS
On July 28, one day before my birthday and one week after my first relapse, I was officially diagnosed with multiple sclerosis (MS). While I knew that people with transverse myelitis (TM) have a 50% chance of developing this, I assumed if it would happen, it would take years.
At least, I don't have to worry about getting MS anymore.
NOW, BACK TO THE STORY
On Tuesday, August 3, I went to the ER by ambulance, my mother flew in immediately, and I honestly have no clue what happened between then and my first full hospitalized week. I was released Friday, August 21, but with conditions. I had to go back to Pittsburgh with my mother for 2 weeks of R&R.
Initially, the idea of this was more torture than comfort. I had just started seeing someone (yay!) and I was concerned that the extended absence would cause him to think "is this worth it?", "do I really want to date a neuro gimp", "she's hot and all, but there other hot chicks who aren't sick", and the list of self-degrading scenarios goes on.
But my real objection was that this was tangible proof that, at least for that time period, I was considered incapable of caring for myself, i.e., the dreaded burden of dependency.
I wanted to get out of that hospital and return to life as normal; 21/2 weeks of my extended birthday month were already murdered by this relapse.
Apparently, while I was septic, tachycardic, and in relentless pain, when asked what year it was, I responded with all hazy certainty, 1995.
I have no idea why this is the year I returned to. My 1995 was as uneventful as any college sophomore. But there I was, staring into the blue eyes of my nurse, neurologist, and infectious disease doc, while my mother sat and watched them taking every effort to keep me from getting a stroke.
2 days of plasmapharesis
a crackhead stroke victim roommate who screamed "waaaaaaaa......ter" over and over again,
inability to stand or walk for a couple of days (hello bedpan!)
get well cards
my favorite roommate, Precious
the uncompromising pain
about 1/3 of my visitors (thank you!)
the preferred moniker switch from TM to MS
my mother flying and driving back and forth from Pittsburgh to Philadelphia
there are now nodules in my lungs (who knows what that means)
the should-have-expected last day of hospitalization yearning to get the hell out of there but you-must-wait-to-be-released-and-receive-your-release-papers 4-hour wait
ON THE ROAD AGAIN...
When the 2-week R&R Pittsburgh sentence ended, I had mixed feelings about leaving. While my mother's stairs are a real bitch for a weak gimp like me, as they became less difficult to maneuver, they were actually a solid measure of my gradual improvement. But aside from a few flights of stairs, I experienced all the good that my hometown had to offer - most of it from the vantage point of my mother's 2nd floor balcony.
In Philly, I have a handful of great friends. In Pittsburgh, I have a history; I made my mark there through my dance company and arts outreach work; my brother, sister-in-law and my joyous nieces live there, as do many friends and relatives, including my resilient grandmother and my BFF/virtual doctor who I've known for my 34 years on this earth.
But Pittsburgh, with its hills and distinct neighborhoods, is not gimp-friendly. Philly is. (Though it should be better.)
So here I am. And here I'll stay, 6 blocks from my doctors and hospital - a distance I can walk on my best days.
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