This is Your Brain on Acronyms & Self-Injections

After 1 year of MRIs - all of which were squeaky clean - my brain decided to invite 3 lesions to join in on the "let's fuck with Melanie until she can't take it anymore" bandwagon.

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.

Back Home, Big News, Hallucinations & Hot Docs

A big hello to everyone. And a big thank you to those of you who tracked me via my mother's posts on Facebook.

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.

MEMORIES...
Apparently, while I was septic, tachycardic, and in relentless pain, when asked what year it was, I responded with all hazy certainty, 1995.

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.

All that I recall from 8.3-8.21 is:
3 surgeries
2 days of plasmapharesis
sepsis
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)
AND
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.

Let the TM Word be Spread like Butter!

A lot of good, bad, and who the hell knows has been going on in my transverse myelitis (TM) life, but I'll get to that later.

For now, let's toast and boast.

I was invited to write an article about myself and TM for The New York Optimist, an online magazine with more than 55,000 readers. The publisher liked the article so much he made it the cover article.

I'll continue to spread the neuro word here and there. But for this week, let's hope that 55,000 more people get a little edumecation [sic] about how special we 1 in 1 million-ers are...

To us.
To PR.
To a cure.
To recovery.
And in this instance to coverage.

Tonight I may eat a butter sandwich with a glass of vino to celebrate. And maybe if we channel our energies on the word spread we'll accomplish so much more as a unit than individually.

spread, spread, spread, spread, spread, spread,spread...

I'm feelin' it (except in the places in my body that are TM numb). :)

Until later,
Melanie

You Haven't Written. You Haven't Called...

I admit. I have been AWOL from the textual side of this blog. I hope it hasn't been too lonely or jealous of all the attention I've given to neuro art, which is also a detour, but one with a very different mode of expression.

Since I wrote last I've had:

1. 7 sessions of plasmapharesis
2. 1 permacath surgery
3. 2 trips by ambulance to the ER in 1 week
   
4. 1 hospital stay
5. 2.5 5-day infusions of IVIg (I'm on the third one currently)
6. 1 rained-out art festival
7. 1 visit from a high school BF
8. 1 emergency visit from my mother (on the 2nd trip to the ER)
9. bi-weekly physical, occupational, and speech therapy sessions, and
   
10. 1 break-up

And I've probably made at least 50 new paintings, collages, or drawings, plus a small chapbook. I've also recently:

• doubled my dosage of anti-depressants even though there are still things and people that make me smile
• taken 10 steps forward, and at least 5 back (cliche noted and accepted)
• received two original hand-made canes for neurochic from 80-some-year-old woodworker, Bart Davis
• filed for social security benefits
• worked with my rheumatologist to find a method by which I can tolerate the chemo
• used a Barnes & Noble coupon to get an amazing deal on some art magazines
• was forced by circumstance to communicate with my ex-husband who despises me (how can anyone (other than the sick person them self) hate a sick person?!)
• watched my cheeks puff to Biggie-Sized proportions
• collected my south-bound traveling hair, aka alopecia and
  
• used a knife to cut vegetables for the first time since I got sick

Despite all the progress, the full-time-ness of my sicko existence, and the ideas and projects I have splashing about in my mind, my Transverse Myelitis (TM)-Meds-Situational depression has blossomed...like my cheeks. If it were just the puff face, my vanity could handle the blow(fish...couldn't resist the pictorial pun), but this cluttered mind is overwhelmed and underwhelmed.

I'm bored.
I'm tired.
I'm sleeping my life away.
I'm bored with being tired.
I'm tired of sleeping.

Can anyone relate?

At my last doctor's visit, he said to expect another year of life as it is - symptoms, side effects, treatment I assume. Can I handle this? On some days, I think why not. On other days, I want to turn my tremors into an earthquake just for some excitement. Alcohol doesn't even bring me pleasure anymore...I'm too tired and nauseous for it.

Without wine, what is there?

And let's talk self-esteem. I am not used to this low self-esteem thing. And all because of some puffed up cheeks, an errant right side of my body, tremors, and myoclonic seizures of my entire body and vocal chords. Am I vain or what? Or is it deeper than the way I present to the world? I think it is. I know it is. But isn't it obvious - my mortality has taken a serious beating to its ego, and the "not drinking" to drown out my sorrows isn't helping.

But really, I think it's a triple-decker issue of pain, cognition, and time. All of which make expressing myself visually rather than verbally, more enticing. When you don't know what you're doing (as I have no clue since painting is new to me), there's excitement, doubt, questions; it's like a game show and I'm the host. It's like having a job that challenges you, which in my neuro case, isn't possible to any degree.

So Why Haven't You Written?
Because my life sucks, and I don't feel like I rock at the moment. I didn't want to disappoint you with my own disappointments. I'm Melanie, the optimist, the glass 2/3 full girl, the glamour gimp. Invincible, unstoppable Melanie. I didn't want to present the ugly side of me - the 'roid-raged-engorged-faced-chemo-nauseated-TM/meds-exhausted-barely-enough-energy-to-feel-sorry-for-herself-Melanie.

But here we are, guests at my pity party, and what does that get us? A real person, with real emotions that tumble and turn like laundry if I could do it myself.



Painting: "Puffy Cheeks" by Me