Friday, March 16, 2012

A recap of my ms experience - Part 2 Starting Therapy

If you haven't read part 1, be sure to start here:
http://gilenya.blogspot.com/2012/03/recap-of-my-ms-experience-part-1.html

So here I was, driving home from Gainesville after getting my second opinion. All hopes of having the myth of my ms dashed. Staring reality head on.

I had to pull the car over out in the Florida wilderness surrounded by what looked like the set of Tarzan on this (then) two lane stretch of highway and just have a good scream followed immediately by a flood of tears as if someone had turned the faucet in my head to full ON.

Pity party over, I restarted the car, cranked the stereo and sang at the top of my lungs the rest of the way home. I don't recall the songs but Tom Petty keeps sticking in my brain. Running down a dream...

So here I was, with a brand spanking new disease I knew squat about. Thought maybe I was officially one of Jerry's kids for a brief time before someone clued me in that ms isn't md. In 1999 I'm pretty sure I didn't have a PC and wasn't able to get strung out on a Google Search high of adrenaline. I had to consult my physician as was the practice Way Back Then.

He sat me down and we went over all the various therapies that were available at the time. There was Avonex, Betaserone, Rebif and the newest of the bunch, Copaxone. He thought Copaxone would be right for me to start out because of all the drugs it had the least amount of side effects. The other drugs were all interferons and they carry with them some pretty nasty possible side effects. I quickly agreed with him, not wanting to risk "flu-like" symptoms as part of my regular daily life.

But the big drawback was the fact that, no matter which drug I chose, it was going to be injected. That meant needles. Those are big scary sharp things that leave you bloody and crying. They are the things I dreaded most during my two pregnancies. I could NEVER look directly at a needle being poked into me or I know I would have just passed out.

So here I was with an incurable disease, being told by my doctor that my case was particularly "aggressive" and that I needed to start therapy right away if I was to have any hope of holding progression -- and disability -- at bay.

The doctor got me all lined up with the medication deliveries and scheduled a nurse to come to my house to teach me how to do the injections. Eeeek!

The nurse turned out to be the nicest guy in the world and he knew right away there was a lot of fear and trepidation to get over. He tried to joke around with me and calm me down. We talked a bit about *how* to do the injections and how to prep for them and care for them afterwards, but eventually it was time to face the executioner.

So he's got all the stuff spread out on the table. Back then the shots weren't in pre-filled syringes. Each shot required 2 single serving bottles with rubber tops on them. One had sterile water, the other was the powdered drug. You take the syringe, attach a needle, stick it through the rubber top of the water bottle, suck the water out, then stab the top of the bottle with the powder in it and squirt all the water into the bottle.

Then it was a matter of swirling it around and making sure all the powder was mixed up before you injected.

He got it all mixed up and ready to go and then presented me with a choice. I could either watch him give me the shot and learn by example, or I could fly solo and do it myself with him giving step by step instructions.

My head turned away from him, my hands flew up instinctively to ward him off, and I said "You do it! I'm not doing it."

The choices for injection sites were upper arm, front of thigh, either side of the stomach, or hips. I figured the hardest spot for me is going to be my left arm since I'm left-handed.

I forced myself to watch and, had I not seen the whole shot prepared in advance, I'd have known full well he just shot battery acid into my arm. It was on FIRE! OMG I have never felt anything like that.

He stayed for a while after, realizing this had been traumatic for me, and tried to lessen the harsh blow of "I have to do THAT for the REST OF MY LIFE??!" that I was feeling.

He said "You know, when we were in nursing school they taught us to give injections by practicing on an orange. To inject another person feels about like how it feels to stick an orange. Maybe you could practice a bit today?"

He left, I tried to forget about it as much as that swollen throbbing lump of battery acid under my skin would LET me forget about it, and that was the end of my lesson for the day.

It would have been easier if I could have just gotten someone ELSE to train how to give me these shots, or just got to my doctor's office every day (yes even weekends) and had his nurse stick me, but there was nobody else. Sure I have a boyfriend and a family, yadda yadda. Turns out I come from a long line of needle weenies.

So the next day found me all alone. I had prepped the shot and was staring at it trying to work up my nerve. I remembered what the nurse had said about practicing on an orange.

Well I didn't have an orange.

So I was pinching up the fat on the top of my thigh, holding that needle and taking a few practice swings as if I were throwing darts or something, and all the while I'm saying "Orange, orange, orange."

Oranges are thick. They have thick skins, right? So it's gonna take a mighty whack to get that needle stabbed in there good, I'm thinking.

I hold my breath, give it a good swing, and BAM! I had that needle buried to the hilt in my thigh before I realized what had happened. I was shocked. My thighs, it turns out (although they might look a little orange-peely) are actually about as thick as butter.

Shocked to see a foreign object embedded in my leg, I did what came naturally. I yanked it back out.

Only to realize I hadn't ever injected and now I had to do it all over again.

Sheesh.

So that was the start of an eight year relationship with the needle that never got any better.

Meanwhile, I was relapsing at a steady rate, having attacks about every 3 months or so. Most of them requiring hospitalization and use of steroids to halt the attack.

I was miserable. Always using at least one cane, sometimes two, and during the worst attacks I'd use my dad's old walker or rent a wheelchair by the week from this medical place down the street.

I really saw no end in sight and was depressed constantly. I didn't know how depressed I was because it was constantly with me. It wasn't until one day the sun came out and shone on me that I realized I'd been living so long under a black cloud.

I was diagnosed when my son was only six months old. It was very hard, in those early years, to raise a small child and fully enjoy the things you would expect to enjoy. I'm pretty sure when he took his first steps he could probably walk unaided farther than I could at the time.

I stayed on Copaxone for seven or eight years. Then one day things changed...

To be continued. Stay tuned for part 3 and go make the popcorn. I promise it won't be long.

2 comments:

  1. I know many people with MS and it is so challenging. Thank you so much for sharing your experience. You are amazing with how much you manage. Do you ever speak at health conferences? I would love to have you speak at one of my events. Best wishes to you, Valerie Bowling, the Conference Forum

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    1. Hi Valerie! I am currently a Gilenya Guide for Novartis, traveling around speaking to groups of other MSers as a patient who is on Gilenya.

      Other than that, I have never done any other types of public speaking but would be very interested. I am trying to find ways to be more of an MS activist.

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