Friday, June 29, 2007

11 months of Avonex

I've been taking Avonex for 11 months now. Although I'm more comfortable with the shots, I still feel nervous every time I start preparing the injection kit. Some Fridays, my mind will turn to the shot throughout the day. Dissolving this nervousness is the main thing I want to focus on now.

I tried a new autosuggestion last night: "You can ignore any pain you feel." I expect this to work better than any suggestion of not feeling pain, and indeed, last night it already seemed to bear some fruit. With repeated use and reinforcement, I expect it to become highly effective; and then, perhaps, it will become easier to approach each shot with normal blood pressure.

The CD I made is helping frame each injection session. Particularly felicitous are the two Enya songs: Orinoco Flow to remind me to "go with the flow" and relax, then Only Time to remind me that the future is, as Sarah Connor said, a dark road.

Audrie and I are beginning to implement our plan of having no sweets in the house, to create an environment more supportive of health for our son. My post-shot treat, then, is changing its character. Actually, since the baby and I are both usually in bed around the time of my shot, I have relatively little urge to reward myself afterwards, but I do think it's a good idea.

Sometimes I'll read a book (a bit of a luxury these days). Last week, I spent some time playing Final Fantasy VI, which "is regarded as a landmark of the …the role-playing genre." I'm not sure how much progress I'm going to make at 20 minutes a week, but I certainly enjoyed it. Last night, I spent some time exploring Web comics that I had stumbled across: The Book of Biff, a one-panel strip graced with a certain wry subtlety, and Gingerdead, a sure hit for anyone who, like me, thinks Halloween is the greatest holiday, loves stories about skeletons, and is slightly too macabre for true mental health.

A certain tension arises now that the baby is here. Audrie is taking him solo on Friday nights to support my sleep and recovery, not to support my wicked depravity. I hope that I have struck a balance by only spending a half-hour or so of Friday night on these pursuits.

Finally, here are two more bonuses of having MS. The first, which I've touched on before, is that friends of friends have started asking me about my experience, usually because they themselves are experiencing some strange symptoms. I'm neither a physician nor a counselor, but I enjoy helping to the extent that I can. The second is that taking Avonex can improve your posture. I noticed last week while carrying Leif around that bad posture was more painful than good posture. Good posture almost just feels like the pleasant ache after having stretched or exercised, while bad posture feels like I've been sitting in a stressful meeting with bad food, hard chairs, and no sunlight for 12 hours.

Sunday, June 24, 2007

The In Crowd

It is delightful to be behind on my projects, including this blog, for such a glorious reason as parenting my baby boy. The myriad of possible unhappy reasons for delay crowd darkly in the background, making the entirely happy actual cause shine all the brighter.

I have been experimenting with adding a "pain-free" suggestion to my pre-injection autohypnosis routine. No obvious effect so far, although the "relaxation" suggestion still works like a champ; but then again, I've never had any success with "glove anesthesia" either. I have never taken the time to try a full script for it though, so maybe that should be my next step. (Note: New Age Alert on that link!)

Last Tuesday I did a sleep study. I had recently seen an ENT specialist to get a hearing test. I'm in love with getting functional baselines now. Early caught is early helped, and it's hard to catch without measurement. My hearing is "perfect", though I don't know if that's age-normalized, but since my snoring keeps my wife and son awake, I thought I'd get that checked too. I should get the results soon, but the real take-away lesson is that sleep studies are pretty cool, and if you have a spare night, you should try one sometime.

Walgreens called three weeks in advance this time to set up my next Avonex shipment. I wonder if it will really be there this time? My first prescription renewal is coming up too, which gives yet another opportunity for administrative adventure.

My Google Alert on MS pointed me at a study indicating that high-dose, high-frequency interferon (3x weekly, subcutaneous) is better than low-dose, low-frequency (1x weekly, intramuscular—like Avonex). If I ever shift to more frequent shots, I just hope the side effects are less severe. Advil helps me manage them, sure, but I still feel off for about 24 hours after every shot. Meanwhile, I admit to some suspicion when a company that manufactures and sells interferon sponsors a study that concludes people should buy more interferon.

But maybe they're just serving the public interest. MS seems to be increasing in popularity, although the diabetes and cancer crowds are still front runners. And don't even bring up heart disease. Man, no one can touch that guy. Google reports about 47,000 hits for "multiple sclerosis" in the domain, maybe another 5,000 in, 4,600 in, etc. Lots of good stuff out there, too. Most of us seem to have small blogs, like this one, with a circle of readers drawn from friends and family, and with only a few comments per post. That seems all to the good. I could spend all day, every day, reading about MS if I wanted to. I don't want to, and I imagine neither does anyone else. So go out and read something else! I'll see you again soon.

Saturday, June 02, 2007

A Thursday Farce

Maybe Walgreens Pharmacy is not broken, but is just on a quest to provide endless blog fodder. I called on Tuesday to order a refill of my Avonex, being down to my last syringe. I spoke with Tammy, a friendly and refreshingly bright woman who, in a historic first, realized on her own that I wanted the medicine shipped to a local retail outlet. I guess the 9th time is the charm here, as I am on my 10th month of treatment now. Tammy indicated that delivery for Thursday would be no problem, and I started the week buoyed by hope.

Thursday evening, Audrie, Leif, and I went as a family to our local Safeway, having realized that a diet of cardboard and air would probably not provide any of us with adequate nutrition. After shopping, I ran into Walgreens while Audrie started cooling off the car. I followed the same routine I always do. I went up to the pharmacy, waited for someone to be available, and then said that I was there to pick up a prescription from Walgreens Specialty Pharmacy which should already be in their fridge. The guy who helped me this time started tippity-tapping on the computer, which is usually not a good sign. The computer does not need to get involved in a successful transaction; I just pick up and go. After a bit, he said that it appeared that "they" still had my refill. I repeated that it should be in the fridge already. He went back and looked, returning to say that it was not there and I should call the specialty pharmacy. Since I had the starting-to-be-grumpy baby in my arms, I left and we went home.

At home, I called up Orlando. The guy I talked to had a delivery tech get on the phone back with my local Walgreens. The local place put him on hold for a long time. Eventually my guy told me he was going to have to have the tech call me back; up till then, I had stayed on hold to create a sense of urgency. But soon enough, William the delivery tech called me up. Those of you who work with me will know what I mean when I say he reminded me of Dwayne D.: an earnest, hardworking young man whom you can count on for results. William told me that they were really "jammed up" at the pharmacy, and he had even talked to a manager, but they had told him to wait half an hour and call back. So we got off the phone after I gave him permission to call me back as late as was needed. It was no more than 10 minutes before William rang me up again, telling me that he had just called and pushed until they figured it out. As I more than half suspected, the Avonex was already delivered and sitting in the fridge. William told me that Nick was the one who had said it was there.

After dinner, I returned to Walgreens. A young woman helped me. She walked straight to the fridge and returned with my prescription. I noticed Nick coming over to ensure that she knew where it was, but she had found it already. Nick apologized and shook my hand, but said there was really nothing I could do to decrease the likelihood of a repeat event, because there may be different people there every time I come. So far, Nick has always been there, so if this happens again and I see him, I'll ask for him straightaway. In the end, I have my next month's supply and only an hour or so of a few people's time was wasted. Even though I know all too well, from personal experience, what it's like to be part of a broken system, I am still faintly astonished that Walgreens is as successful as it is with such an inefficient system underneath.

After all that, my shot itself was painless, in welcome contrast to last week. But I was nervous beforehand, probably because of last week. I may start adding "no pain" suggestions to my hypnosis routine, but I notice that I'm nervous about that not working and then undermining my whole confidence in autohypnosis. Anyway, aside from a little shakiness after the shot (from nerves), my side effects were minimal again this week (at least in the context of lots of extra sleep and Advil).

I ran across something via Google's ads last week. The link was "The Cheap, Safe and Effective Treatment for Multiple Sclerosis That the Drug Companies are Trying to Keep Secret", and told the story of a nurse (Elaine Delack) with MS who had discovered that there was a connection to Histamine-2. There are actually many pages with the identical blurb. They eventually lead to a garish site that says you have a "VIP (FREE) Guest Pass" to an audio interview with Delack, and asks for your name and email to proceed. I looked around some more instead, and found an equally tawdry site that debunked this treatment as a scam based on outdated 1950s research. The National MS Society mentions Prokarin, Ms. Delack's treatment, in a document on fatigue (PDF format), saying on page 3:

Note: Prokarin, a drug containing histamine, caffeine, and other undisclosed ingredients, has been marketed to pharmacists for compounding (creating a preparation using the ingredients) for individual patients. It was reported in a recent controlled trial to reduce fatigue in a small sample of patients with either relapsing-remitting or progressive MS. It is the opinion of this board that while Prokarin does not appear to be harmful, its level of benefit does not justify its very high cost.
A search on "Prokarin scam" turned up a rather different profile of hits than a similar search for "Avonex scam". I'm not going to follow up with the histamine-2 connection unless it starts coming from a more reputable source. But the implication in the original ad still bears consideration.

It is very difficult for a corporation to have a soul. Some seem to come close: I'm told that Costco and Target both are welcomed into new communities because of the good they do there. The word "corporation" itself speaks only of having a body, not a soul, and whenever there is money without accountability, you have problems. Even if every individual employed at Biogen-Idec (the makers of Avonex) sincerely wishes for a cure to MS, it will be difficult, if one is found elsewhere, for the company itself to give up the revenue stream, and even the corporate machinery, associated with Avonex. So I'll keep my eyes open.