The adventure has begun. It began ten days ago on a sunday evening.
The little blue and white pills sat in their little black case waiting for me. The deal was that I would take them & they would slow down some of the symptoms and flares that had been taking place for a while. A long while. Way too long.
I stared it down. It didn’t move. It mocked me. I did what all the lovely people on the support group page told me to do. Take the 1 aspirin, eat, wait a little while, then take it with a lot of water. Enough water to keep a camel happy for a year. And I did most of that. Except take the pill part. Instead I stood there putting it in my mouth, taking it out, putting it in, taking it out. I was nervous. Terrified. I knew how much life would change. Then my 6 1/2 yr old piped up and told me to just take it “Do it for your health”. Who can argue with that? So I took it. And waited. For anything & everything. I was nervous so I walked around a bit. Cleaned a little. Then I remembered The Tonys were on and that took some of the worry away from me. Damn, Neil Patrick Harris should host all awards shows from now on. I really hope Tim Minchin wins a boatload of awards for Matilda. These thoughts kept me preoccupied. Then slowly but surely I was getting warmer. I couldn’t figure out what was up. I kept looking at the air conditioning system and adjusting it. Hmm It was 72. Why am I so hot? Took off my t-shirt & threw on a tank top. Husband & I sat down to watch Mad Men.
A short time later I was burning. The skin on my arms and chest were bright red & blotchy. It hurt. It was absolutely horrible, this was a worse feeling then giving birth. Which sounds silly but it was. I kept jumping up and down making these pitiful whining noises. A red rash popped up all over my arms, chest & legs. It hurt to walk. The feeling of fabric against my legs was torture. My husband tried to calm me down but that seemed to make matters worse, as I was in a heightened state. I quickly grabbed a wet towel and applied it everywhere. That seemed to take some of the stinging feeling away. I guzzled 5 glasses of water & took to the boards to the support group for advice. Thankfully the advice was much of what I was doing. Drinking 8 glasses of water seemed to bring it all down. Within an hour the flushing had subsided, however my legs still felt prickly & would remain so through most of the night.
This was my first dose. The next day went fine. Morning & evening went off without a hitch. No side effects. However tuesday morning was a different story. I took the medication & within 2 hrs I could feel something. I was a little dizzy, felt a little tired. More then normal. I was getting ready to take the kids to the local mall. I had promised them, they were excited to go use some gift cards. But within a mile from home I sensed the change. I was dizzier, and my eyes felt like rocks. My body suddenly felt like a paperweight. I could barely stay awake or feel anything. I made it another quarter mile to the local McDonald’s and grabbed food. Pulled over and the kids ate. I started tremoring. My left arm. Always my left arm. I argued with my mother who told me that it would pass. But I was terrified. I took a deep breath and decided to turn around and go home. I made it home and immediately came in and climbed upon the couch. I was tired. Oh so tired. I drank a huge diet coke to try and get some caffeine in my system. It’s not the best choice but I knew it would help me stay awake. Thankfully C is old enough to watch over his sister so I could try and get back to me. I did eventually feel ok. I had a second wind late at night with the night dose.
Which made me wonder if there was something to the way I was taking them. The first dose was a night dose & I had some energy with it. Morning doses seemed to make me a little sleepy, rinse lather & repeat. This went on the next day. And the following day thursday was the worst. I could barely function. It started with an argument with my contractor who basically went back on most of his word regarding fixing a huge issue his former company caused & screamed at me on the phone(my husband is still planning on dealing with him soon for that one). I was shaking. Then a family issue that had been going on was giving me such stress that my mother finally forbid my sister to talk to me about it & said that she wouldn’t talk to me about it either until things settled. I was that much of a mess.
It was by early afternoon when she called to check on me again & I could barely lift my head to the phone, and my words were slurring as if I drank a bottle of whiskey my mom knew something was wrong. She came and picked up E. She had her stay with her until J could pick her up on his way home from work. She even sent my stepfather over with a pizza for me and C. During this time I took to the phone and called my neuro. I told the nurse what was happening and when the Doctor called me back a short time later she said to just take one pill a day at night from here on out. Even when the dosage goes up to the 240. I did as she said and the next day I felt myself. I even made it to the mall with the kids. They had the best day. I even overcame my fear of drinking with this med thanks to some encouragement my by new friends in the group who were experts on the matter, and felt just fine. In fact the pill seems to go down better when an hour later you follow it up with a glass of wine.
This week I’ve been fine with the medication. Which is a far cry from my days with Avonex. I officially apologize to my husband Josh & to my ex/friend Matt for everything I put them through when they had to administer that bitch of a drug to me, and the anger I exploded with days following due to the horrendous side effects. I wish this pill had been around back then. Thankfully Josh , unless the 240 does a number on me down the line, you’re a very lucky man. Thanks for sticking around through this all. I know I give you options sometimes, but you never take me up on them. I love you for that.
I know I always said I would never go on these drugs. Or at least never give them a chance again. I’ve had some pretty strong things to say about them. And while things are going well with this oral drug, I’m still having reservations. With the rate my eyes are having problems(and for a writer, losing the ability to see is up there with death), I know I had very little choice. It’s been 25 years for me. And I’ve come off lightly compared to so many I’ve come to know and care about. There are just times I don’t want to put my body through the push and pull of the medications. However, if this keeps going the way it has then I’ll keep going. I want to see my kids grow up, and being the tough broad I am, I’m not giving up now. I’m going to stick around for another 40 or so years. That’s my goal. And I don’t give up, or let go, easily.
Before I go, I must say thank you to my new friends from this group. They’ve really helped me through the last two weeks. If it weren’t for them I may have chickened out and not taken the damn pill. Plus I’ve realized it’s nice to know that there are others out there who feel the way I do, and I’m glad to have them as my friends, current and future.