I went to see the neurologist last Friday and he said everything's fine.
A couple of weeks ago, I had noticed that I had double vision in the extrema of my vision. At first it seemed to be only on the right, but later I noticed it was also in the corners in both sides. So I called the neurologist and made an appointment. He had given me a choice between "tomorrow" and "next Tuesday". Because I had a work commitment "tomorrow", I chose the later appointment; but it turned out to be "next Friday" instead of "next Tuesday" when I was talking to the scheduling lady. That was too long to wait; in the future, I'll take the soonest appointment offered and trust everything else to work itself out.
The doctor checked my reflexes, balance, and all that jazz; they were all fine. My normal range of vision was also fine. It's only in the extremes of my visual field that I've got anything happening. The doctor said that "everyone" has some kind of weirdness out there. I also realized that I had been wearing my glasses lately, which means that everything out on the edges was blurry anyway. It was only because I was wearing my contacts that I noticed the oddity.
Once I thought back on it, I realized I had been feeling mild vertigo off and on for a couple of weeks before I noticed two signposts where there should have been one. Although vertigo was a precursor to my previous events, this time Audrie has it too, and we suspect it's just lack of sleep from having a new baby around the house. After my previous vision-related events, I had started doing some eye exercises, but had kind of forgotten about them lately. I think I'll start making them a regular stop on my daily agenda again.
In summary, I think that either this was a mild event, or it was a non-event and we were just extremely vigilant. If it was a mild event, I'd like to credit the Avonex, but don't have enough support to do so honestly. It would just be wishful thinking. So I'll simply be grateful that it appears to be nothing serious, whatever it is.
In other news, I got some good advice recently. It was a timely reminder from S— not to be the disease. I say timely, because just that day I had sat down to write about my role at work. I found myself writing things like, "don't be indispensable—MS". But I realized that this is being the disease. Much better to bring all my passion and energy to my work; otherwise, what's the point?
I'm conflicted, though. In sports, I always heard "be the ball". Now I'm told "don't be the disease". So which is it? To be, or not to be? That is the question.
Tuesday, March 27, 2007
I went to see the neurologist last Friday and he said everything's fine.
Sunday, March 18, 2007
Another pretty good week. Leif didn't "sleep through the night" like he did two weeks ago (those 5 and a half hours made Audrie's night much easier!), but nor was he particularly fussy. And as for me, my head- and bodyaches were minor. I got in a nap during the day, which also helped.
In my continuing search for Clues, I'm noticing that one thing this week and my previous really good night have in common is that I had coffee in the day. It seems an unlikely contributor, given that diuretics and hydration are natural enemies in the wild, but there it is. I'll do the experiment, and if nothing else, at least Starbucks will make a little money. My current best guess at a formula for success, then, is: No Sweets + Coffee + Bounteous Sleep.
I think I should add an intro track to my Avonex Shot Night Boogie Album. Right now it intros with Orinoco Flow, the song that I have previously found very relaxing. But then I am in kind of a hurry, even though the next song, Moments in Love by the Art of Noise, is the song that a stage hypnotist used to put me under. And being in a hurry, I find, is not conducive to The Chill. Clearly I need some sort of danceable groove for track 1, not too long and not too short. The search is on!
Posted by Stephan Terre at 7:22 PM
Tuesday, March 13, 2007
The last two weeks have been exercises in opposites. Actually, my shot went well both weeks. The addition of music is a big help for my steadiness of hand, the new luer-lock syringes are easier to use, and simple practice has made it much easier to give myself an injection. It's just the side effects that were so different.
The Friday before last (or FBL for short), my side effects were so minimalist that they petitioned me to reduce the alphabet to one vowel and one consonant. Last Friday (a.k.a. LF), on the other hand, I had a headache throughout the night and well into the day, accompanied by body aches and weakness. I wonder about that weakness. I definitely get tired more quickly than usual, but I can still exert a fair amount of force. Maybe I mainly feel weak because it hurts to push too hard or something. But the practical effect is that I can't carry my boy around for very long at a stretch, even though I can still lift him; and I can't stand for too long without really wanting to sit down.
I know staying hydrated is important on Friday night, but when I awaken in the grips of my Avonex hangover, it is remarkably hard to muster the energy to actually drink any. It helps to have a couple of pre-filled glasses right there in the room with me. But then the natural consequence of drinking a bunch of water means that I'm waking up relatively often, so I'm more tired when I do awaken, so it's even harder to get my drink on. It reminds me of trying to write down dreams—when I wake up from an interesting dream, it is so much effort to actually write something down, even just a scribbled handful of words, that I have not had much success overall.
After enduring LF's side effects all morning, I finally took an Advil in the early afternoon, and soon I felt quite good. I don't like taking Tylenol or Advil right after Avonex because it seems like the interferon is already a major strain on my liver, and adding another chemical is like the uppercut after a right hook. I intend to be taking Avonex for a long time, because I intend for it to be effective for a long time; and while one dose of analgesic is no big deal, a few decades' worth of repeated use just doesn't seem like a great idea. But if I'm going to be so much more under the weather if I don't take anything on the bad weeks, that's not such a great idea either. Whether I have a week like FBL or one like LF, whether I am hardly affected or whether Interferon Beta-1a lays me low for a day, it is encouraging to know that I will always rebound by Sunday.
Although I'm still exploring what it means, and very much still struggling to express it in words, I've recently made a discovery about Tai Chi, the weapons forms, and extending my sense into an object in my hands. I just tried and failed to say anything useful about this (it's a good thing I'm not writing on paper, or I'd have a big eraser hole here), so I'll just state that I hope to apply this same lesson to my needle in the coming weeks. I hope that if I can extend my feeling into the needle, I will realize benefits in administering my injection: maybe smoother execution, maybe greater relaxation, maybe something I can't predict.
With Little Boy in our lives, Audrie and I have both found that we can get about one "thing" done each day and still attend to our new parenting tasks. This will change in the next few months, but right now the upshot is that if I don't write here on Friday or Saturday, I'm unlikely to write at all. I don't like not writing; ergo, I look forward to seeing you next weekend in this venue.
Posted by Stephan Terre at 10:34 PM