Saturday, October 28, 2006

Islands

Yesterday, Audrie gave me my shot in front of her second audience, this one being my dad & stepmom. She did great, as always. Today I felt the usual side effects, with some decrease from last week (more on that later). I decided to try taking a shower, which was a good idea in that then I was clean, but a bad idea in that it kept me standing longer than I probably ought to have. I started feeling pretty tired afterwards, and took a nap for a few hours. I feel much more alert now, thanks. I helped a little bit with cleaning out the laundry room (our painting project for tomorrow), then sat down to rest some more. Overall, I'm a little achy and sore, but will feel just fine by tomorrow.

My impression of my diminishing side effects today was like sea level slowly sinking. When I first started taking Avonex, my whole body was engaged in the side effects. If you think of the side effects as sea level, then what you see is water to the horizon. With each passing week, the water has been receding; and in so doing, it has begun to reveal islands. Now that I don't ache everywhere, the places where I do ache grab my attention more. Because I feel better, paradoxically my account of myself to family and friends makes it sound like I almost feel worse! By the end of Saturday, though, the aches I do feel are almost pleasant, like the soreness that comes after along day of rewarding physical work. Hey, maybe I should try to market that. "Feel pleasantly achy without ever leaving the couch! One simple shot lasts a full 12 hours!"

I wonder whether I will come to dread the Friday shot for Saturday's aches. So far, I don't feel any sign of this happening. But I'm worried that maybe my body will put two and two together and start getting tense on Fridays. Time will tell, I suppose; and I bet that my own interpretation of and storytelling about my symptoms will help to keep everything framed positively.

Tuesday, October 24, 2006

Distraction

L— suggested some useful techniques for dealing with injections, particularly if they're painful: listen to music that engages your mind (for her, it's best if she can sing along), ice the area, and, in general, distract yourself. Good ideas all. I am happy to find that I'm moving in the opposite direction, believe it or not. Since my shot is not actually painful, except to the extent that I anticipate it and tense up beforehand, I am finding that the more I can experience the true feeling of the injection, the better off I am. This last week was no exception.

My excellent dad was here to see first-hand what the side effects are like. It's one thing to hear that your only son is doing fine on Saturdays, but quite another matter to see it firsthand. Side effects once again seem diminished over the previous week. Pretty soon I won't have anything interesting to say, and I will have to resort to a weekly fashion report. There's a lot wrong with the fashion industry, but those models have a really strong presence when they get on the runway. That's not a trivial feat.

The distraction advice came in quite handy when I got a flu shot, though. I found that I did not want to look at that one, even though normally I always watch injections, and also watch when I'm having blood drawn. My poor wife hustled upstairs with me to the flu shot clinic, only to find out that they wouldn't give it to a pregnant or breast-feeding woman. I stood in line a while longer, having checked the box that said I had an Active Neurological Disorder, wondering if I would also be sent home, but they had no concerns about MS and flu shots. My Walgreens information packet had mentioned this explicitly, too.

I had a call late last week from Gwen at Biogen Idec, the makers of Avonex, following up on the Therapy Support Program. Somehow, I haven't found the time to call back yet, but hopefully tomorrow.

The cats all think it's pretty cool that I'm home and sitting near them, but they clearly would prefer either treats or playtime with the fishing rod toy, so I shall sign off for now. I am pleased to sign off once more in good health and good spirits. Only one week till Halloween!

Sunday, October 15, 2006

Adequacy

This week's shot went well. Side effects from the Avonex were less than last week, putting to rest all my namby-pamby fears about temperature and airplanes. I felt pretty good most of the day after (Saturday), with just minor aches and weakness. I started tiring out in the late afternoon, but somewhere around 9 or 10 PM, I realized that suddenly I felt totally fine. I'm feeling hopeful that, by the time the baby comes in early January (assuming he's on time), I'll be able to help out on Saturdays nearly as much as on any other day.

I think I've said it before, but Walgreen's Specialty Pharmacy just does not have the same high level of competence that Avonex Direct Delivery does. I cannot use the latter because of restrictions on my insurance policy, but I did deal with them for my very first shipment. Walgreen's seems to try to hire average or above-average people and use standardized policies to get good results, whereas Avonex Direct Delivery seems to hire excellent people and also use standardized policies to improve their performance.

A couple of weeks ago now, I had received a call from Walgreen's arranging for my next shipment of Avonex. I was quite pleased until I came home on Friday and found another message from Walgreen's asking me to set up my next shipment. I called them back, and left a message per the instructions on the answering machine, but have not yet received a return call. I'll try again tomorrow (Monday) and see if I get through to a person, but currently, I'm not feeling a high degree of confidence that everything's going to quite come together. Given some of my friends' stories about the regular Walgreen's pharmacies, I will not be surprised if this becomes a regular issue. I'll post later this week and let you know how it turns out.

Friday, October 13, 2006

Got Physical?

I was going to title this entry Omegatron and the Council of Time, but then I didn't have a follow-up, so maybe I'll save that for another post.

I had my yearly physical today with my internist. He advised me to be extra vigilant of all my many moles, since I'm on an immune-modifying drug, and my normal automatic surveillance mechanisms are not as active as they could be. Sounds like something from a spy thriller. He also encouraged me not to get the bird flu. (Perhaps the bird flu will give new currency to the old rhyme about Enza?)

My neurologist had sent over both my MRI results and a letter detailing his diagnosis, and I got to read both. I had intended to get the MRI result myself some time ago at a visit to the neurologist, but had gotten sidetracked with other questions and forgot. There is a plaque (scar) about 6 mm in diameter in the parietal region of my brain, but nothing directly in the area that would control my eyeball muscles. The implication seems to be that the mechanism for my two episodes (both visual in nature) was a slow-down of the impulses coming from the parietal region to the eyeball-movers. The good news about this is that the brain is apparently better at routing around damage to the more central parietal area than it is at recovering from damage to the more peripheral occipital area.

Tonight's shot went fine, no thanks to Omegatron and his "really important" meeting. I seem to be learning to feel the side effects earlier, which I like to attribute to an ever-subtler discriminating awareness, but which may be nothing more than imagination. I may also be mistaking some Tylenol-induced feeling for early interferon side effects. One day I'll do an experiment where I don't take Tylenol ahead of time, and see how I feel. But not just yet.

Sunday, October 08, 2006

Safe and Sound in AZ

We're back in Tucson after a delightful short trip for Audrie's Utah baby shower (there's another one planned for here in Tucson). On the way back, the security team was interested in my little package of Avonex, but after I showed them the package, they let me through with still less fuss than Audrie's purse occasioned.

We did last week's shot at Audrie's grandmother's house. She is diabetic, so already had a handy sharps container. The way Avonex is delivered is as individual pre-filled syringes in little kits. Each kit has the pre-filled syringe and a needle; then the box as a whole also contains alcohol wipes, gauze pads, and adhesive bandages for each injection kit. So I wasn't able to open up the kits and show security what they contained, but I figure that's what the X-ray machine is for. They were not concerned with my frozen gel pack. I was glad, but a little surprised. If you're worried about lipstick and shampoo, why not frozen bags? Maybe I don't understand enough about explosives to know what I'm talking about.

The Utah shot went fine. Side effects were as usual: slightly diminished from the previous week. I can do a little bit on Saturday night, but I don't really feel right again until Sunday.

This week, Audrie administered my shot, and did a great job. I still get a little tense right before the shot. When Audrie did this one, I looked away so that I couldn't tell when it was going in, and as a result, I was able to feel the actual feeling of the needle much better. It was really nothing; the majority of any discomfort I feel comes from the story I tell myself. I hope to get better and better at perceiving the actual physical experience instead of substituting imagined experience.

Yesterday I slept till noon, except for being woken up a couple of times by stupid telemarketers. The first few hours of the afternoon, I felt quite good: just a little weak, and hardly achy at all. The part of my mind that worries about such things suggested that maybe I had let the medicine get too warm on the trips back and forth to Utah, and so I was having lesser side effects because it was not working as well as it should. Well, maybe so, but there's no point in worrying about it. By early evening, I was feeling stronger aches, but still, I believe, less than the previous week. Whatever else may be true, I think it really helps to get a ton of sleep on the night of my injection.

Tai Chi has been demonstrated to help with MS. My teacher's classes are on Saturday morning, which is pretty much the worst time for me right now. I try to do at least part of the form before my shot, so that I'm more relaxed, but, as usual, I never seem to get around to doing Tai Chi during the week. I suppose it's no different than the other exercise that I don't do during the week, but it bugs me. In a few months, I'll be getting plenty of exercise from carrying the baby around, so I guess I shouldn't sweat it too much.

A beautiful sunset is beginning outside, and I am grateful to be here to see it. Here's to another week of health!