Saturday, November 18, 2006

Comedies

Yesterday's shot was a mixed bag. I decided to try for an earlier injection (5 PM instead of 8 PM) to see if doing so would help me recover faster on Saturday. The answer appears to be no: I still felt the side effects all day today, plus part of last night. Looks like two nights' sleep is the real answer. Getting set up for the shot was no big deal. We were moving smoothly through the process until the needle fell on the floor! It was no longer sterile, and we couldn't use it. Luckily, Biogen-Idec had sent me out a 5-pack of spare needles a couple of months ago, so I came out into the great room to find them, holding my alcohol pad to my leg so I wouldn't forget the site I had picked for my injection. I got back into the bedroom with the needles, we pulled one out and affixed it to the syringe, and all was well. But both of us were rattled by the interruption in our routine, so Audrie was less comfortable giving the shot, and I was less comfortable receiving it.

I did remember to hypnotize myself this time, suggesting that I would be able to remain very relaxed during the shot. Even though the shot hurt a little more than usual, I did feel more relaxed, and I think I'll keep up the practice in the future.

Today we went to an Infant CPR class (only offered on Saturdays). Even though it wasn't much physical work, it tired me out enough that I came home and crashed on the big comfy chair for an hour or so. Tonight I still feel kind of overwhelmed.

Overall, a mixed bag. But I'm coming to realize that I'm actually afflicted with a second incurable brain disease in addition to MS. It's called Optimism. I read news articles and blog postings several times a week about MS, and I know that, unless the therapies improve dramatically, I can expect a worsening in my own condition, just like everyone else. I know that, even if I stay as symptom-free as I am now, I will still be unable to interact fully with my little boy on Friday nights & Saturdays. I could list the negatives and the worries all day long, if I wanted, but they do not diminish my feelings of hope. One day at a time, one moment at a time, I have the unparalleled opportunity to live this wonderful life of mine, and I could ask for nothing better.

Saturday, November 11, 2006

Eleven Eleven

Today was a good day. Slept till 10:45, though it was fitful. I dreamt a lot about the baby (generally good dreams), but I think I was just achy enough to keep me from sleeping deeply. But then I felt pretty good this morning and all day. I even managed to replace the fridge water filter and bring in presents from Audrie's baby shower, neither of which I could have done on a Saturday just two months ago. As long as no major relapses hit me, as long as I keep tolerating the medicine, I ought to do just fine. Every day is a gift.

That's all from me. If you want to get sucked into the Web a while longer, go look at the interesting photos on Flickr.

Thursday, November 09, 2006

Happy Dancing Thursday Time

Had an appointment with Dr. Glynn, the neurologist, today. He checked my reflexes, made me do tests like alternately touch my index finger first to my nose, then to his outstretched finger (but he cheated and kept moving his hand), and pronounced me in fine shape. I won't see him again for another six months, barring a flare-up. Excellent.

From the neurologist's, we went to a nearby clinic where Audrie got a flu shot. We asked the staff at Dr. Glynn's office if they knew where the clinic was, but they did not. It turned out to be in the building next door. Then, while sitting in the waiting room at the clinic, we overheard a man ask the staff there where Dr. Glynn's office was—and the clinic staff didn't know! So we gave him directions and he went on his way. It seemed strange to us at first that the two offices could be so close, yet not know each where the other was. Then I realized that I don't know who's staffed in the building next to mine, and it didn't seem as strange any more.

In other exciting news, today when I went to pick up my Avonex at Walgreens, the pharmacist actually asked me for my ID! Brilliant. On the other hand, there was a message from Walgreens waiting on my phone when I got home; maybe tomorrow I'll find out that they think they didn't send me my medicine after all, or something. Always an adventure.

I decided that, since I don't have enough of my own photos to populate this blog as well as my regular one, I will simply link to other interesting photos on the Web. Not being much of a researcher, I am likely to post photos that you could find yourself with the most trivial search imaginable, but perhaps they will increase your viewing pleasure; if so, I am happy.

Saturday, November 04, 2006

MeSmerized


I forgot to mention another idea I had yesterday, which was to use hypnosis to help manage anxiety, pain, or side effects related to Avonex. I took a couple of self-hypnosis classes 8 years ago or so, and I've also read enough about it to know that it can be used for anaesthesia, at least. This week, I didn't think of it until too late, but maybe sometime I'll try hypnotizing myself before my injection to see if it helps me stay relaxed.

I wonder what mechanism this might actually activate? Suppose that I tried to use it to minimize the side effects I felt the day after my shot. Maybe one way for my body to make this happen would be to develop neutralizing antibodies against interferon beta. Then my side effects might be mitigated, but my primary effects would be inhibited! I think pre-injection relaxation ought to be a safe bet, though.

So far today, I've felt pretty good, possibly the best I've felt on a Saturday since I started taking Avonex. It's a hopeful sign. I'm still a little achy here at the end of the day, but I'm sure I'll feel right as rain again tomorrow. And meanwhile, today has been quite bearable.

I found this post's photo on Flickr. Lots of good stuff there if you're looking for fun photos.

Friday, November 03, 2006

Connections


My friend B— told me how to put pictures on Blogger. I can't put too many here, or I'll steal all the fodder for my regular blog, but maybe I'll put one here every now and then. This particular photo was taken on a Saturday afternoon. As you can see, I am able to toddle around just fine!

This week, I finally got around to returning a call from the Avonex Therapy Support program that I had received 10 days previously. This is a program run by Biogen Idec, the makers of Avonex, which basically involves someone touching base with me every 6 weeks to see how I'm doing and offer encouragement. I spoke with a pleasant British woman named Katherine who was very empathetic and helpful. She was impressed with Audrie for all her help, as well she should be. She gave me lots of good advice. I mentioned how I tense up a little bit before each injection, even though the pain is much less than, say, stubbing my toe. She pointed out that one doesn't set out to stub one's toe on purpose, though, so there's no component of anticipation. I also mentioned my concern that my body might eventually put together Friday's shots with Saturday's aches, and start resisting the injections in some way. In addition to seconding my plan to use a positive framing as a ward against this possibility, Katherine also said that this kind of thing does happen to some people, and the therapy support personnel have lots of techniques for addressing it. That helped me feel quite a bit better. All in all, I was on the phone for about 40 minutes with her.

When I went home that evening, I also finally had time to call D—'s friend Bill. Bill has been suffering from a variety of hard-to-pin-down symptoms for several years now, and believes that he has a primary progressive form of MS. Unfortunately, he has been struggling with the unwillingness of the VA doctors to confirm any diagnosis. A diagnosis of MS is necessarily an educated guess, requiring a certain leap of faith and ability to commit to an opinion. Bill's feeling is that the VA doctors are concerned about claims against the system, and disconnected from their patients, to the extent that they will not make a diagnosis for something that doesn't have a clear and unambiguous marker. He also has enough exposure to toxins, radiation, and the like, as well as injuries, that I'm sure it's hard to determine a cause for his symptoms. Anyway, Bill just wanted to talk to me because I am the only person he knows who's actually been diagnosed with MS. I told him about the way it had presented itself to me, my experience with my doctor, and my experience with Avonex. I felt glad to be able to offer some small measure of help, and humbled by his experience. I am truly fortunate to have gotten hooked up with the caring doctors that I have. I can understand why so many people with MS (and diabetes, and cancer, and everything else that might afflict us) are so motivated to reach out and help others who share their disease.

Today I decided to do my shot a little bit earlier than usual. If I can get home from work early on Fridays, I think administering the medicine earlier in the evening might help me recover earlier on Saturday. It might be that I just need two full sleep cycles to feel 100% again, but then again, maybe I don't. I'll experiment!