I went for the usual visit to my neurologist in LA over Thanksgiving week: walk on tip toes, walk on tip toes backwards, walk heel to toe, walk heel to toe backwards, close eyes and touch nose, determine soft (a Q-tip) from sharp (a safety pin), jerk around from the little rubber mallet hitting knees and elbows. I always imagine this is what getting a drunk test must be like. It seems to me that a big disease with it’s own initials (MS!) should have a more intricate and serious seeming examination to go along with it. Q-tips, safety pins and rubber mallets seems so amateur somehow…like we’re just playing doctor patient.
So, when Dr. S. suggests I go for a steroid infusion treatment (since I didn’t do so well on the walking parts of the test), I’m happy to play along with the game. 3 hours a day for 5 days getting a slow drip of something called solu-medrol, sure!
The first day was cake. I snuggled into warmed blankets and watched I Love Lucy reruns while eating the proffered snacks from a little basket and drinking fresh hot cappuccino made on site for me by the nurse on duty. This place in Pasadena is a 5 star infusion center!
Day 2, again, not so bad. It being Thanksgiving Day, I was moved to a different part of the clinic without a nurse dedicated solely to my whims, but I was in the glow of actually having been able to stand on one leg without falling over last night. Victory!
Day three. My friend Kate came by and we got to catch up which was great. I regaled her with stories of how I had played Cranium with some friends the night before and was able to actually act out the “break dancing/belly dancing/line dancing” card! Geez, I can’t even remember the last time I was break dancing. All was going well.
Day 4, Anna came with me and we ordered in Thai food and played with embroidery thread (totally different story). I started getting pretty tired of being hooked up to this infusion bag and beginning to feel just a little bit grumpy.
Day 5. Enough already. Get this f$%*ing bag outta my arm. No thanks, I don’t want any of your stupid snacks. I already had coffee this morning, thanks. I ended up playing Angry Birds for 3 hours and then fled.
I spent the night over at Elizabeth’s house, and then got up early for the drive back to Arizona. I had a good book on tape and there wasn’t much traffic, so the drive home was uneventful. I got back around 4, had a shower and fell dead asleep around 6. Imagine my surprise when I awoke 14 hours later! I thought steroids caused insomnia!? Well good on me, they had the opposite effect.
Despite the long sleep, I woke up in one very bad mood. Apparently, major doses of steroids like I had just been through causes your body to stop producing them naturally (I know, I know….you’re thinking geez, Erika, you didn’t look into this before? No, I did not. We were just playing doctor I thought). This predicates the need to give one more artificial steroids in the form of Prednisone.
Prednisone is one nasty drug. I spent an entire week shut inside, unbathed, sneering and plotting ways to maim things ~ my friends, my cats, my car, my couch ~ anything. I just wanted to…well….maim something. I stopped answering the phone. I stopped showering. I stopped going outside. I stopped reading. I finally called Dr. S.’s office and explained that my former sunshiney self had abandoned me and that I had become nothing but an angry maiming plotter. He prescribed Ativan.
Oh boy. Now I was playing in the big leagues. Solu-medrol. Prednisone. Ativan. I don’t like taking any medicine beyond red wine. I do the daily injection of Copaxone and I figure that’s plenty. I opted to skip the Ativan, finish the weaning off the Prednisone, and go back to red wine.
Now a month later, here I am, still not walking all that steady, but back to my old happy self. I’ve realized that although MS has been roaming around my proverbial house for over 20 years, this last “treatment” gave it a prominent seat at the head of the table and quite frankly, it pissed me off. I will give MS it’s due and respect that it’s here, but also firmly request that it stay off the center stage.