My MS Story

Oh, where to start with this novella.  Well, I was diagnosed with RRMS in December of 2007.  But, like most people, my problems started a while before I was diagnosed, so let me back up a little.

In January of 2006 I took a temp job at the National MS Society.  It was a fun job (although I had the boss from Satan’s ass.  Best part? K was my boss.  L was K’s boss.  A was L’s boss, and also K’s mother.  L wanted A’s job, so she kissed K’s ass and K got away with everything – fudging her vacation days, sending me to do her work and then taking all the credit and praise from L, being verbally abusive to everyone who reported to her…seriously, she was so abusive that in 1 year she went through 3 assistants, and I was one of them.)

Anywhore, I had been hired as a temp from January – the end of March.  Less than a month into my contract, K and L came to me and told me they wanted to offer me a full-time, permanent position doing, well, exactly what I had been doing.  (I didn’t know yet that K was the Ignorant Bitch from Hell.  Oh, I didn’t mention she was stupid?  Yeah, she had a word of the day calender, but only memorized two definitions from it: copacetic and imperative, but she used them as synonyms for each other.  Totally not kidding.)

So, knowing only that K looked like Judith Light’s aged sister from Who’s the Boss (again, not kidding – hot pink nails and matching lipstick, fake orange tan, blue eyeshadow, fake ashy-blond hair that she wore with the bangs curled up and hair-sprayed in place, a la 1984), I accepted the job.  It was the first “professional job” I had after completing Grad School the spring before, and I was feeling adult-y and feisty and kick-ass-y.

But over the months, not only did I get a good look into a great organization that is one of the most generous non-profit’s I’ve worked with over the years (while simultaneously working for the worst boss I’ve ever had), I learned a lot about MS and met a lot of people with the disease.  I met people who had no disability, invisible disabilities, and full body disabilities.  I met caretakers and parents, spouses and siblings and friends who rode or walked or fund-raised for their loved ones as if they had the disease themselves.  I saw people fighting the battle alone, some beaten down, some standing strong.  I basically met every stereotype you can imagine of a person with MS and then the exact opposite of every single one of those stereotypes.  And, as I said, I learned a lot.

I loved learning about the disease.  Partially because I wanted to understand what it was and how it was affecting the people I was helping.  Partially because diseases and medical stuff has always fascinated me.  And partly because the more I learned about it the more I began to suspect that this disease was what had been plaguing me for the past couple of years.  But when I mentioned that to my family and friends, they laughed and called me a hypochondriac.  Thanks for the support, guys!

10 months after I started working at the NMSS, I landed my dream job – editor for a publishing house.  This is what I went to school for.  This is what I wanted to do with my career.  I was sick every morning from dealing with K and L’s ass-kissing so in October of 2006 I said Fuck You and never looked back.

During the next year, I started working as a lowly EA (Editorial Assistant) and worked my way up to Proofreader in the Publishing industry.  But as I started having weird physical problems, I couldn’t keep MS out of my head.  During that time, I went numb from the waist down for about 3 month.  Couldn’t feel my feet or my legs.  Poking my legs with a fork and saying “Nope, not a damn thing” was a great party trick, but I was constantly tripping over nothing and tipping over, which made me walk into a lot of furniture and walls.  It’s hard to walk when you can’t feel your feel.  I think everyone started to suspect I had become an alcoholic.  I think that would have been more fun.

I went to my Dr and told him about the numbness, and also about this weird tingling, tickling, zipping feeling I would get shooting up and down my spine when I moved my head a certain way.  He thought I might have a pinched nerve in my neck that was causing both problems, so he gave me muscle relaxers, but they didn’t work.  So I went to a chiropractor for several months.  Nope, didn’t work either.  Then he referred me to a specialist who took one look at me when he walked in to the room and said “You have a pinched nerve because you’re too fat.  Start exercising and lose weight and it will go away,” then turned around and walked out to submit a bill for $150 to my insurance company.  Needless to say, I never saw that motherfucker again.

By the end of October 2007, I was under a ton of stress.  I had started living with a guy (Healy) the previous October, after he moved out here from Vegas to be with me (that’s another long story, but I’ll get to it one day).  He wasn’t working, we were poor, I had more bills than I could pay on my crap salary, and frankly, he was wearing out his welcome.  But we were 3 weeks away from flying to Vegas to pack up the rest of his things and to ship them back here, since after our “test year” together, we decided, yes, we liked each other enough for him to make the cross-country move permanent.  (Yeah, we stayed together for another 3 years.  Like I said, long story).

On November 1st my cousin got married and as I was trying to sign the card for him, I kept dropping the pen.  When I finally got it steady in my hand, I couldn’t get it to write.  Not because it was out of ink, but because I couldn’t get my fat fricken fingers to move.  My brain kept yelling at them “Move!  Move, bitch, get out the way!” but they just laid there, like link sausages.  After struggling for 10 minutes, they finally got the message and I was able to scrawl something that was supposed to be my name but looked more like a worm after a seizure laying on the card.

I didn’t give it much thought, and by the next day that weird weakness was gone.  I still had the zippy spine feeling, but as long as I didn’t lower my chin to my chest I didn’t feel it, and I had regained the feeling in my legs and feet for the most part.  I still walked like a drunk, but I just chalked that up to inheriting my Mom’s klutziness.

Healy and I had a red eye flight to Vegas, meaning we’d hop the plane at 10pm, get there about 3am our time (1am Vegas time) and go right to the hotel to sleep before getting up in the morning to start our mini-vacation/packing his shit.  On the plane that night, I had a massive allergy attack on my inner right forearm.  I was wearing a t-shirt and polyester-type light-weight jacket, and I thought it was the jacket causing the problem.  By the time we check into the hotel, my inner arm had a fire engine red rash and swollen.  I swallowed the allergy pill I take every night anyways, and passed out.

When I woke up the next morning, I knew something was off, but I couldn’t figure out what it was.  My eyes were kind of blurry as I looked at my arm.  I had been scratching it in my sleep, and the red bumpy rash I had fallen asleep with has broken open.  Now my arms was swollen and covered with painful, oozing blisters.  And it still itched like hell.  I got up to go to the bathroom and run some cold water on it and walked into a chair.  Then I walked into my suitcase.  When I hit the bathroom, I turned on the light, but it still seemed kind of dark in there, so I looked around for another light switch.  But I had already turned all the lights on.  That’s when I realized what was off with my eyes.

My vision was half gone in my left eye.

I’d like to say I calmly woke up Healy to tell him I had suddenly been attacked by the Black Death, but I HAD SUDDENLY BEEN ATTACKED BY THE BLACK DEATH! There was no way I was handling this calmly when a plague of locusts and a river of blood were due to show up any moment.

I think my scream woke the people in the room next to us.  And if you’ve ever been to Vegas, you know how thick those walls are.

I will say, despite his shortcomings (which I will blog about at another time, I promise), Healy handled everything with my MS really well.  He kept me calm when the locusts were coming to eat my face.

Since this was the first day of our 4 day trip, there wasn’t much we could do about my eye.  I decided to just wait and see if it cleared up on it’s own, and if not, I’d head to my Dr as soon as I got home.  But we did get dressed and head out to the nearest drugstore and get a big old tube of cortisone cream and gauze pads and wraps for my arm.  There was no way I was letting my clothes or the desert sun near that oozing mass.  Plus Healy didn’t want me spreading the blister liquid further up my arm or to other parts of my body (or onto him).  So for the next four days I stumbled around Vegas only partially seeing the amazing lights as my left eye got darker and worse each day, looking like a failed suicide attempt with bandages wrapped from my wrist to my elbow on one arm.

 

MY first MS Attack, in Vegas, 2007

MY first MS Attack, in Vegas, 2007

 

By the time we got home, I was almost completely blind in my left eyes, and I was ready to gnaw my own arm off to stop the burning pain I felt under the blisters nonstop.  I went to my Dr the day after we got home, and I was diagnosed with Shingles on my arm, given an antibiotic, and referred to a neurological ophthalmologist for my eye.

I saw the eye doc the following day, and he gave the the news: Optic Neuritis.  Basically, the nerves behind my eyeball had somehow gotten damaged, so the message from my brain telling my eye to see wasn’t getting through.  As soon as he said that, I thought back to my stubby sausage fingers refusing to move, and it popped into my head: Oh shit. I have MS.

This wasn’t a completely random thought.  I knew enough from my year working at the NMSS that Optic Neuritis is often the first problem to appear in people with MS.  50-60% of people who have Optic Neuritis will be diagnosed with MS at some future time.  And I also knew that MS caused problems by giving you lesions, or scar tissue, over your nerves that blocks messages from the brain from getting through correctly, which is what leads to disabilities.  When the doc said he wanted to send me for an MRI to see how bad the damage to my optic nerves was, I already knew what they would should: a lot of damage on a lot of my nerves, and even some lesions on my brain.  I had MS, and I had had it for a while.

Less than a week later I was sitting in a neurologists’ office with my Mom, waiting to hear the results of my MRI.  I felt a surprising calm.  Probably because I already knew he’d tell me I had MS.  Also because my Mom was nervous enough for both of us.

“Your MRI shows scar tissue and plaques on your brain, which, combined with everything else you’ve told me, leads to the diagnosis of MS – you have Multiple Sclerosis.”

I looked over at my Mom.  “I told you so.”

Yes! I really said that to my poor Mom! I feel bad now, but at the time I felt justified and also annoyed that it had taken one set of pictures of my brain to confirm for my family what I had been telling them for over a year.  (Have I mentioned that I’m kind of psychic?  No, for reals.  Used to work as a professional medium and tarot card reader in Boston, and I’m damn good at it.)

The second thing my neuro told me after the MS diagnosis was “Don’t think this means I’m going to write a letter saying you can’t work anymore and are disabled.  I won’t do that.”

Um, hello, Dr. Fucktard? 3.2 seconds ago you gave me my diagnosis. 1.1 second ago I was a rude little shit to my Mom.  Did you hear the word “disability” come out of my mouth at all?  Then Dr. Fucktard told me I was too fat and I should have weight loss surgery.  Not fucking kidding.  By the way, his name is Dr. Robert Conroy and he works in Dartmouth, MA.  Stay away from him.

Anywhore, Dr. Fucktard started me on 5 days of IV steroids to clear up my Optic Neuritis, and then put me on Copaxone right away.  My vision cleared up 100% (which is awesome, but also a little sad in a way since my Dad is blind in his left eye and we had our own little inside joke going for a while).

I stayed on Copaxone for over a year, but Dr. Fucktard told me it wasn’t working.  Which is kind of an odd things to say. See, the way the MS meds work is like this – they don’t cure MS and they don’t clear up the symptoms or problems the MS give you.  There are 4 types of MS, and the kind I have (Relapsing-Remitting MS) is the only kind that doesn’t progressively get worse over time.  But over half the people who start with RRMS will develop a progressive form in 10 years, and about 90% of people who start with RRMS will become progressive in 25 years.  So what the meds do is modify the disease in that they slow down the progression of it.  But, since MS affects every person differently, and each med affects every person differently, there isn’t any real way to tell if the meds are working.

Example: I start out at a disability level of 3, and after two years with no meds I move to a 7, and after another 2 years, I move to a 10.  It’s possible that if I had been taking one of the meds, after 2 years I would have only gotten to a 4 on the disability level, then 2 years later a 7.  Or, even on the meds, after 2 years I could have still gotten to a 7, and then no worse.  Or on the meds after 2 years I could have gotten to an 8, then no worse.  There’s just no way to tell, except by measuring it against your own MS history.

So to take me off a med after only a year when my MS going through a Relapsing (active) phase and I had nothing to compare it to, was kind of stupid.  But Dr. Fucktard did it anyways.  And kept pushing me to have weight loss surgery.  So I found a new neuro, who is AWESOME (shout out to Dr. Dhillon! xo)!

After the Copaxone, I tried Rebif, but one of the side effect of that is depression.  I already have severe depression (a could of kinds – I’m such an over-achiever) so that side effect made me suicidal.  Not good.  Went off that and tried Tecfidera.  That gave me every side effect listed, plus some that weren’t (heart palpitations anyone?) when I was only on a half of the starter does (which was half of the full dose) for  days.  Since 1 in 10,000 people on that can get Cancer and I was already getting all the other side effects (plus those nifty extra ones) I went off that one on day 4.

So now, after losing over 100 pounds, I’m going to try the Copaxone again.  I can’t take any of the other shots since they all have depression as a side effect.  I won’t take any of the other pills since they are all linked to either Cancer, heart attacks, or some other not-so-fun-way to die early.  The thinking is that since my body metabolizes my other meds differently now that I’m smaller (I’m take half as much of my anti-depressants that I did before), maybe the Copaxone will work better this time.  Plus, it’s better to be on something, (even if it may not be working, just in case it does work) than nothing.

Since my first attack, I’ve only had about 4 attacks strong enough to require IV Steroids. Yay for that because everyone hates me when I’m on those suckers.  Even the voices in my head go on boycott when that IV goes in.

Right now my biggest MS issues are fatigue and leg weakness.  I’ll feel fine, and then Boom, I’m sitting on the ground because my legs gave out.  Because of this, I had to leave my dream job when I was only 30 and I’m now on permanent SSDI.  I hate it.  I’ve had a lot of trouble dealing with my diagnosis, and am still angry about it sometimes.  I was in therapy for about 5 1/2 years.  In that time, I managed to deal with every other issue I’ve ever had, and still step past the MS diagnosis one.  But since I have no more issues to hide behind, I’m doing pretty good on my own working out my hatred for my MS.  The motherfucker.

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