Wednesday, December 24, 2008

Got my Solu-Medrol Cherry popped.

So I was at work yesterday when this crazy ass headache crept up behind my eyes and my vision started to go all blurry like I couldn't keep things in focus. My left eye started to hurt and I just had the weirdest feeling. So on my lunch break I decided to run across the street to my neuro's office just in case. I really thought these feelings could be more likely related to an oncoming migraine rather than optic neuritis but I was freaked so I went. He didn't see anythig when he looked in my eyes, and agreed it could just be a migraine but decided he'd rather be safe than sorry and gave me a round of IV Solu-Medrol in the office. He sent me home with a week's worth of PO Medrol too.

Lemme start by saying thanks to all the bloggers who have posted abut the myriad side effects of steroids. At least I was warned that I would feel like a maniac. There were however, still some surprises in store for me. First I was shocked by how quickly and how much better I felt by the end of the infusion. Unfortunately I was also surprised by the gawd awful taste in my mouth and further by the fact that the taste hasn't gone away. Everything tastes like sweaty hairy ass right now and the only exception I found is sweet tea. This seems related to the paradoxical situation with food in general. I want to eat every thing in sight until I taste it and then I never want to eat again. I feel plain odd and fidgety and paranoid, but at least I have the energy to do all the Xmas Eve cleaning and cooking. The cooking's extra challenging today since I use recipes really just as suggestions and usually season to taste, and I'm making a traditional Italian Christmas Eve fish dinner for 12. Hope it tastes good to all my husband's Italian relatives, 'cause how the hell would I know?

Mostly I'm surprised that I'm having these issues at all. My husband says it's naive of me, but I really thought I could skate throught the 3 month wash out period with no meds before I start the Fingolimod trial without any detriment. Last night though I was laying in bed when someone snuck under the covers and locked my left arm in an invisible vice. I admit I panicked a little. I couldn't move my left wrist or hand at all, and there was an intense crushing sensation in my forearm. I got up and took the next dose of Medrol and it felt better this morning, but still not right. All the left sided ataxia from my last relapse had seemed to go away a few weeks ago so I don't know if this is NEW or OLD. Grrrr. Very frustrating.

On top of feeling creeped out and bizzaro, my neck and joints are hurting and I'm gonna blame it on the drugs and the MS because it's a beautiful 78 degree Xmas Eve here in Florida. I finally feel a little Christmas-y though at least so it's back to the holiday chaos now.

Wednesday, December 3, 2008

My day is totally kicking ass! Bring on the FINGO!

This is a good day. The sun is shining on this b-e-a-utiful Florida day and I'm back to feeling pretty good. I saw the neuro today and he gave me the thumbs up to join the Fingolimod trial taking place nearby. I thought for sure he'd be cross with me for quitting the Copaxone (I have to wash out for 3 months before starting the trial.), but he was totally into it. Turns out he used to do some clinical trials himself and used to chair the IRB (safety committee for medical research) at the hospital where we work. The nurse took a look at the lumps I was getting from the injections and said he would probably want to discontinue the Copaxone anyway. I don't know why really but I fully expected him to tell me I was a crackpot for risking myself with a un-FDA-approved drug and would chastise me for skipping the last two weeks of Copaxone. Instead, he was really supportive and gave me some good info about how clinical trials work. This encounter reaffirms my choice in neuros and confirms my addition of him and his staff to my Xmas card list.

I can't wait to get started in the trial. I know it's ridiculous, but I feel like I'm carrying on a family legacy by participating. My grandfather did a lot of medical research and invented a lot of really common medical products. As common as Hep-locks and prosthetic hips. My whole life my mother would occasionally get this weird look on her face and say, "You are JUST like my father." I never knew if it was a compliment or insult; they sometimes had a strained relationship. But I got to spend some time with him before he passed away, and I think she was right. He and I were/are similar in our analytical-ness and way of communicating. Plus, he was a dirty old Englishman and I think I may be the only person who really appreciated his sense of humor. I visited him once in rehab after a severe foot injury (diabetic neuropathy) that he got by driving his scooter like it was an ATV. I told him I was going to the store and asked if he'd like me to pick up anything. (He loved sugar-free hard candies.) So he says in his thick south UK accent, "Yes, love, could you get me a new ass?" And sucker that I am asked, "What's the matter with your ass?" And straight-faced, dry as hell he says, "It's cracked right down the middle." He got lotsa giggling and eye-rolling from me, but the nurse didn't even crack a smile. So either only I think that shit's funny, or she couldn't understand a word he said. Either way, he was a great guy and I know he would totally get behind me on this drug trial though he'd also pick apart the trial and riddle me with questions. He died before I was diagnosed but I know his respose would've been, "That's shit luck, that," and never have treated me any different. Might've even forgot all about it, or offered me his pogo stick (cane). He stayed savvy till the very end though and his will included donation of his remains to medical research. He was the one who convinced me to seek a career in medicine and radiology would be best because "It's all knob-twiddling and button-pushing. You love that stuff. Plus there's tons of advancements to come in the technology to keep you from getting bored. And since you live in Florida, where people go to get sick and die, you'll always have work." Sage advice from a very practical man.

And the second fantastic thing that happened today happened while I was in the shower. (No not that! Cheeky!) I'm in the shower and my hubs pops in and says, "Hey, a friend stopped by and needs to use the toilet. Do you mind if he comes in?" (We only have one bathroom.) And I'm wondering who it could be that my jealous husband trusts to be in the bathroom while I'm naked on the other side of a flimsy curtain and I hear, "Hallooo Julie!," in the sweet voice of my hubs' best friend of 30+ years. He's been away indefinitely on the other side of the world for way too long, and surprised us by coming home at last. He and my husband have the same weird-ass name (They're both named Shiva, after the Hindu god of destruction. Other Shiva used to date a girl also named Julie. Lemme tell ya, there was major confusion on the phone and lots of jokes about going into the wrong bedroom.), and are the reason "brotha from anotha motha" is the most common cliche in use around here. He is truly family, and our life is better when he's around. Anyway, I was so excited I had to fight the urge to jump out and hug him naked and dripping! Instead I just shrieked, "I love you!" and finished up as quickly as possible. He's been gone so long that it's dream-like to have him back in our presence. He is easily the luckiest sonofabitch I've ever known and hopefully it'll rub of on my Shiva in the way of some profittable employment. If not, I don't care, I'm stoked!