Long time, no…be anywhere near Blogger! Visitors, holidays, and The Common Cold have stood between me and this screen for weeks, and no doubt the continuing holidays will do so for much of the rest of the year. But! Let us not be downcast about absences past or future, but merry that we are met here today!
Saturday, December 08, 2007
Saturday, November 03, 2007
I read some good advice in the Avonex journal Biogen-Idec sent me today. First was to find things that make you laugh, whether a comic in the daily newspaper, a television show, or whatever. Second, and apropos to this blog, is to prioritize your tasks and let drop or delay those that you don't truly have time and energy to get done. Long absence from this space is my clue that writing has not made the cut lately. Even paying the bills is hard to get around to. You'd think that with nearly 10 months of direct experience in how caring for a baby takes all your time, I'd have internalized it and not be surprised by the way bedtime appears each day with ninja stealth and speed.
I've moved my shot night to Saturdays. It's a relief not to have Friday be such a rush—first work, then home to all the usual tasks (bedtime creeping up on silent feet), but! don't forget to take your Advil and take the Avonex out of the fridge and do your shot and get the guest room ready to sleep in at the same time! Saturday has a whole day, rather than the 3 hours between work and bed, to fit everything in.
I play a set of songs each week as I prepare for and administer my shot. Tonight, I replaced the first song in the set, and think I'll like the change. I had been starting with Regina Spektor's Fidelity, which is a great song but has a refrain that includes the phrase "it breaks my heart" just a little too often for "MS night". The new first song, Darlin' Do Not Fear by Brett Dennen, advises instead, "Darlin' do not fear what you don't really know," a more hopeful line to have stuck in your head all night. At least, that's my expectation; I'll find out tonight!
Walgreens managed to thwart my plans once again at the last refill. I called in two weeks early to make sure that I'd get my medicine on time, but the fellow who took my call (Daniel, I think? If I get him next time, I shall be extra-cautious) never actually submitted a work order, so I was in the uncomfortable position of not having a backup syringe in case anything went wrong. Par for the course, I suppose.
I am inspired daily by my amazing son. The last few weeks, he's not only gotten his first cold, but has also been cutting 6 teeth simultaneously. Everyone's sleep has suffered, but my little baby still smiles at us and plays happily, despite obviously being in a lot of pain and not being able to breathe well through his Very Stuffy nose. I strive to emulate his wonderful attitude.
While I've been tippety-typing here, the ninja Night has made his appearance again! Bye.
Posted by Stephan Terre at 8:50 PM
Friday, September 21, 2007
I was casually reading about some new MS development or another through my Google Alert on the subject, skimming the usual bit about "MS is classified as an autoimmune disease" and "neuro-degenerative" and all the other boilerplate, when a chilling phrase I don't generally see caught my eye: "usually progresses to disability within 10 years". In 10 years my boy will be in 5th grade, not even in middle school yet. In 10 years I will still have many years of work to do before I can retire (not even considering health insurance). In 10 years, I may be disabled in some way. And in 10 years, we will certainly have flying cars. I guess you take the good with the bad.
I think it was the same day that I read some brief stories by Auschwitz survivors. Even as short as they were, the broke my heart. I went from that to a meeting. My coworkers may have thought I was red-eyed from worry about the miserable state of our software process, but for once that was not the most pressing thing on my mind.
The hope of n-Acetyl Glucosamine surfaced again, though perhaps it will not arrive in product form until about the same time as those flying cars.
Little Boy started Montessori in earnest since I last wrote, and the change in his routine disrupted his sleep for several days—which meant that we adults slept less too. I remember my dad taking naps most days when I was a kid, and thinking he was nuts to do so. I am starting to sympathize now.
Side effects from my shots are continuing to improve little bit by little bit. One internal voice cheers at the news, but a sly whisperer suggests that I am merely developing antibodies to Avonex, or reducing its efficacy by storing it an improper temperature or some other mistake. I doubt that voice will ever go away, so it is best simply to honor it, check in with the possibilities it offers, and then move on.
The other exciting news this week is that yesterday I discovered my first grey hair, hanging out in the right-hand corner of my beard. At last I look distinguished! It's time to start appearing in commercials, wearing a white lab coat, and to polish a fake British accent. Or would German be more impressive? I'll have to ponder.
Meanwhile, Fall has hit: the daily highs are now in the 80s or 90s. Local retailers are out of sync, and have been selling Northern-style fall clothing for several weeks now: long-sleeved warm shirts and jackets, cozy pants, etc. Not much of a problem for me, but the baby is outgrowing his warm-weather clothes and the pickings are slim for replacements. I hope that in my lifetime, the wonderful global network of retailers and manufacturers will grow flexible enough to be appropriate to local variations in climate and culture. Till then, at least the long pants help protect a little crawler's knees.
Posted by Stephan Terre at 9:20 PM
Thursday, September 13, 2007
I love the Fall. No point in urging it on, but I can tell by the slant of the light that it is coming near. The gorgeous Tucson sunsets are getting earlier too, and soon we'll be able to set our minds to family hikes again.
My excellent dad was here for this week's shot. It was fun to have him as an audience and to hear his impressions of how much our process has changed. Where Audrie and I used to check the instruction sheet and be very explicit about all of the pre-flighting for a shot (checking expiration dates and the like), now we've evolved a shorthand and a routine that makes it much smoother. Another good shot with minimal side effects this week, though some aches. More about that later.
Now that I'm back from our trip to Utah, and recovered from my cold, it's time to plan my coffee withdrawal seriously. Little Boy, while still not a sleeper nonpareil, is certainly keeping us up less than when he was just weeks old. Now the only thing keeping me in the coffee habit is the caffeine headaches I get if I don't have a cup every other day. I suppose 3-4 cups a week wouldn't qualify as a hardcore habit, but I don't like the dependence. My goal is to be free by the winter solstice.
I do like the ritual of preparing coffee, but decaf will serve as well; and I can find or make ritual wherever I want it.
This week I had just enough Avonex aches to be aware of my body and posture. If someone were to have come up to me 18 months ago and say they would help me improve my posture by heightening my internal sensitivity once a week, I think I would have jumped at the chance. Turns out that someone was my neurologist—thanks, Doc! Now just as soon as I make time for regular Tai Chi again, I will really reap the benefits.
Little Boy is starting infant care at a local Montessori on Monday, and we've been transitioning him in since Tuesday. Although there is some interference with the attachment style of parenting that we've been practicing, I feel very positive about the change. In a few weeks, when the trauma has faded and he looks forward to school, I'll feel even better.
I had a couple of other things to write about, but it's already Thursday and I started this post on Monday, so I'll sign off here and put the rest in my Write Me file. Who knows, maybe I'll even have time for my regular blog! Hope springs eternal, and all that.
Posted by Stephan Terre at 8:14 AM
Friday, August 31, 2007
I'm back in Tucson and things are beginning to start to think about possibly contemplating returning to normal. What a busy few weeks it has been!
Air travel with Avonex is actually pretty simple, now that the medicine can be kept at room temperature for up to 7 days instead of just 12 hours. That's assuming a short trip; I have absolutely zero desire to test a trip where I'd have to get the medicine delivered to some other location. The TSA cared a lot more about the hand sanitizer in the diaper bag than about the Avonex, for instance.
In a small happy favor, last Friday's injection site happened to be "L center"—the one that almost never hurts. The nerves in my thigh must be pretty far apart right there. The side effects were also minimal. That was a good thing, because Little Boy, for all of his nearly-8-month maturity, was pretty stressed by being in a completely unfamiliar place and meeting so many new people. He's still not recovered, although his crankiness probably also stems from teething, the rash he developed in Utah, and maybe having the same cold I contracted. So tonight my beautiful wife is alone, not with our usual angel baby, but with one whose temper is as fragile as glass. Dropping his rattle earlier (precious! beloved! rattle!) led to screams that I mistook for pain, even sitting where I was on the other side of the house. The kid's clearly destined to be a great abstract thinker, since he can already associate such value with his toys.
This is not the first time I've had a cold on shot night, but I am still somewhat apprehensive about having both cold- and flu-like symptoms. Not to mention the epic arena battle between interferon, echinacea, zinc, vitamin C, Thymic Synergy (an immune booster that I have left over from before my MS diagnosis), lack of sleep, and the occasional unbidden stressful thought about work. Remember how I was advising us all to chill on the stress front? Yeah, maybe I ought to take my own advice.
At some point on this trip, it occurred to me that if I had an exacerbation while far from home, it would be…not so cool. And that's true. But after all, I could be killed by a meteorite at any time too. Or at least reported to have been killed thus. As always, there's nothing to be gained by shapeless worries, unless it's a couple of cool links about meteorites.
And now, linear time seems to have caught up with me again, for if I am not in bed soon, I will be tired tomorrow, and Morning Guy will curse my name once more. I'm sure it will not be many years before "the baby" transforms into "the boy", and then I shall have ample time to write good blog posts. But for now, you'll have to make do with this one!
Posted by Stephan Terre at 8:36 PM
Saturday, August 18, 2007
I like to think that my side effects from Avonex are continuing to get less severe. Maybe next year I'll look back and laugh at how I had to deal with them every Saturday.
Last Thursday, my acupuncturist said that my liver might be "tired" from Avonex, and did a treatment to help it feel more awake and energized. That was an interesting idea. When we give the baby Tylenol for teething pain, I always think about his liver. But if the way medicines affect the organs is really more like getting tired than like damage, I feel more optimistic. Maybe in 18 years when he's left home, I'll have time to look into that idea :)
CC, thanks for the note about bruising and icing. I do bruise easily, so it's quite relevant.
Next week I travel with Avonex for the second time; but I'll be flying with the baby for the first time. It's a one-leg flight up to Salt Lake City, so it's short and most of our fellow travelers will probably be at least tolerant of babies. We used to be very vigilant about travel (as well as other things), but I imagine that, of necessity, we will relax our focus on the details of tickets, gates, etc. We'll still get there just fine, but it will be more of an "enjoy the ride" kind of experience than one where we control all the details. I'm curious how my injection and side effects will work out with all the newness.
Just read an article saying that stress-related inflammation can aggravate neurodegenerative diseases. No surprise to anyone who's got one, I'm sure. My osteopath describes how her sister, who has MS, can rate her stress level almost numerically by the severity of her symptoms. (The article discusses using chemicals to block the stress response; I prefer to lower stress directly as much as possible.) I ought to print that article out and carry it around in my wallet to show my boss as needed.
Another scattered weekend. I'll publish this now before it extends into 10 sessions at the computer! No post next week because of travel, but I hope to see you again the week after that.
Posted by Stephan Terre at 12:34 PM
Sunday, August 12, 2007
A couple of people have asked me what it means for my doctor to say I'm in remission with MS. For one thing, it doesn't mean that I stop taking my Avonex therapy. It also does not necessarily mean that the disease is not progressing. My first MRI showed old scars as well as active lesions, indicating that MS had been doing its thing for quite some time without any symptoms that I noticed. But it does mean that I have no symptoms or disability at present, and I'll take that gift.
Welcome to all the new readers and thanks for your comments. Harkoo, you mentioned that you ice your injection site and it's totally painless. Thanks for the tip. I'm still trying to decide what I want my relationship with the sensation of injection to be. I am fortunate that the sight of the needle does not disturb me (much). I like to envision it as a weapon, like a sword or spear, that I wield against MS. So right now, I'm trying to extend my sense of touch into the needle. On the other hand, I am obviously trying to distract myself with music and control my reactions with hypnosis, so I think I have a split intention here :) Maybe I'll try the icing technique sometime and see how it works for me.
Merelyme, thanks for collecting a list of bloggers. You're helping to create a mini-community here, which will help us all. Bubbie, thanks for the good wishes. mdmhvonpa, I'm afraid that Walgreens only sells flux capacitors through their online site, and their shopping cart system has a bug that doesn't let you add them. I tried calling customer service, but got stuck in a time-space vortex as a result of navigating their phone tree. And to all who commented, thanks for your encouragement. Each of you is struggling with burdens that I, through undeserved grace, have so far avoided.
This week's side effects were pretty good. I am hopeful that they're still trending towards improvement. Audrie noted that I did my injection very slowly this time. I didn't really notice; I do remember pausing to get past an initial pain, but I didn't have any sense of time for the remainder. My goal now is "one smooth motion". I often find myelf pausing just above the skin. I want to erase that tentativeness. And—why not? Inject with flourish and flair. I might even shoot for pizzaz.
I had called Biogen-Idec with a couple of questions (which the rep referred to my doctor) and to ask for a new therapy journal. Having gone through one year of therapy, I used my old one up! Two weeks later, a two-inch stack of new journals showed up in the mail. Guess I'm set for a few years. I also decided to keep a spreadsheet on Google Docs with date, comfort, site, and notes. I guess my main goal is to have a "backup" of my experiences, out of a sort of suspenders-and-belt feeling that a combination of bits and paper is better than either alone.
Posted by Stephan Terre at 9:00 AM
Friday, August 03, 2007
All is well. I've been pleasantly overwhelmed lately by visitors, Harry Potter, and the general business of life. I shall try to at least catch up on "happenings", although I've been trying to write even just an outline for about a month now, so we'll see how far I get.
My awesome sister-in-law participated in a fund-raising bike ride and raised cashola to fight MS. Someday, when the lab that finds a cure needs $570 to buy a replacement flux capacitor for the cyclotron that will prove to be instrumental in their big discovery, they'll have it!
I saw my neurologist for my one-year checkup and he was very positive. He believes I am currently in remission, and noted that if I stay in remission for 5-10 years, the chance of my disease progressing into disability is virtually nil. Only 9 years to go!
Getting my first renewal on my Avonex prescription through Walgreens was every bit the adventure you might expect from my previous posts, but in the end, Tammy got me my new box with nearly a day to spare before my next shot. I think this is the same Tammy who was so helpful before. If you can just get the superstars at Walgreens Specialty Pharmacy, you do all right.
My injections have mostly gone well. I made the mistake of thinking about a stressful work-related subject just before one, and was barely able to pull myself back to relaxation in time. Later, though, I reflected on how lucky I am to be able to work at all.
My new technique, which I discovered by accident last week, is to adopt a fighting spirit (I use that term because of its connection to Go ). While looking at my beautiful infant son as I prepared for my shot, I suddenly felt/thought something like, "let's get this over with and get back to what's important". So now my weekly weapons against MS are backed up by Advil, self-hypnosis, music, and fighting spirit.
What's this? A post completed? Amazing! And thanks to my wife who, on her birthday, insisted that I write here tonight.
Posted by Stephan Terre at 6:17 PM
Friday, June 29, 2007
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.
Posted by Stephan Terre at 8:46 PM
Sunday, June 24, 2007
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 blogspot.com domain, maybe another 5,000 in wordpress.com, 4,600 in livejournal.com, 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.
Posted by Stephan Terre at 6:04 AM
Saturday, June 02, 2007
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.
Posted by Stephan Terre at 4:18 PM
Monday, May 28, 2007
I read a couple of interesting articles recently. It looks like a special form of glucosamine may help with MS; and so might testosterone gel. The cool part about both of these is that they are generally quite well tolerated, and they're also fairly well-studied. Another article suggests that normal over-the-counter glucosamine might also help, so maybe I'll start taking that. Who knows, maybe soon men with MS will be known for their high level of joint fitness and their slightly larger-than-average muscle mass.
The last few weeks have been super busy, but generally in a good way. I've been using coffee to combat sleep deprivation, a habit which I hope to drop in a few months when Little Boy is able to sleep more soundly. It makes it hard to stay hydrated. I keep wondering whether the Tucson heat will someday start getting to me, as heat bothers so many people with MS. If so, well, I hear that Google Switzerland is hiring. With my firm grasp of the Swissish language, I'm a shoe-in!
This Friday's shot was quite painful for some reason, and I hope I don't hit that particular spot again. But I slept in till late and felt pretty good on Saturday—with the help of Trusty Sidekick Advil, of course. That Saturday sleep is really important (the Web thinks so too), and hard to get with a new baby. Audrie really supports me, though, and I think we're settling into a pretty good groove.
I'll close with this link, which I stumbled over while searching for the sleep link above. It is a site that lists scams and questionable treatments for MS. Now I just need to find out whether that site is itself reliable!
Posted by Stephan Terre at 11:29 AM
5/11/2007: A lot of folks will buy their friends shots of liquor on their birthdays. But United Health Care, my insurance company, went one step farther and bought me an actual shot, sterile needle and all, on mine. Thanks, UHC!
A year ago, I had barely begun to imagine that I would be giving myself a shot of MS-fighting drug weekly—not to mention that I was still getting fitted for my fatherhood uniform. Nowadays, there is a new normal, and the dad duds are the most comfortable I've ever worn, but each week's shot still looms large in my mind nearly every day. Maybe next year it will seem no more significant than putting gas in the car or changing the humidifier filter. Let's find out.
5/28/2007: It is now 17 days since I started this post, so I'll wrap it up quick-like and maybe start on one that's a little more current!
My shot on my birthday was nearly painless, which was a nice gift. Side effects were also minimal (thanks to management with Advil). I had wanted to mention the way that self-hypnosis helps: I find that I am generally able to stay physically quite relaxed if I suggest to myself that I will, and this makes the shots go more smoothly. Then, a virtuous cycle ensues.
L— had asked what role music played for me (she was the one who inspired me to start playing music in the first place). I think what it does for me is give my brain something to do. A part of my brain that would otherwise be focused on the shot, maybe with anxiety, just listens to the music and is content. As I've been playing the same songs each week, too, a routine has developed, with its own pacing and expectations. For example, Enya's Only Time comes on after I'm done with my shot, and leads me to reflect on the future.
Posted by Stephan Terre at 11:16 AM
Sunday, May 06, 2007
I still find that I cannot plan to accomplish more than one thing each day (not counting keeping the baby alive). If the nanny is out, everything else drops by the wayside, but she's back in her usual fine form, so I expect to Get One Thing Done. But today I already have at least two notches on my Accomplishment Belt, so this post may be shorter than short. Let's find out.
Shots have been uneventful the last several weeks. I believe my side effects are still on a positive trend. Though they are no longer decreasing sharply from week to week, with judicious use of Advil and naps, I can almost reliably interact with the world on Saturdays. I have even gone so far as to make tentative plans to attend a week long conference in November, flying out on a Saturday and returning Friday before my injection.
Walgreens is keeping up its tradition of bare adequacy. They didn't call to schedule a refill this month, and when I called, the first person I spoke to mistakenly informed me that I could do refills through the retail outlets from now on. Two minutes after I hung up with her, Rob from my local outlet was on the line telling me that my insurance didn't play that way, and I'd better get back on the horn to Miami. The next person I spoke to told me that getting the refill out in two days was pushing it (this was a Tuesday), but that it would "probably" get there. That's the first time I've heard any such doubt. But everything seemed to be in order until the phone rang Wednesday morning.
The woman I spoke to Wednesday morning, who was refreshingly articulate and together, told me that there were two conflicting delivery dates, and that the notes in my file were out of chronological order, making them confusing. But she did get me straightened out. And I didn't even have to tell her that the local outlet is where I want my Avonex delivered. Despite that being the only place I've ever had it shipped in the 10 months I've been on the treatment, the person on the other end of each month's phone call seems entirely surprised that I would do such a thing. If Mr. Wally Greens were a coworker, he would be so internally confused as to be insane.
So that was my big adventure for this post, and now I've got to go help put Little Boy to bed.
Posted by Stephan Terre at 8:33 PM
Saturday, April 21, 2007
All is well. We've been busy in a good way with visitors, and in a different way taking care of Little Boy. Our nanny is sick with some unknown infection and will be out for a couple of weeks, so we've been doing shift work at home to take care of the baby. As a side effect, our ability to do "one thing a day" has vanished, although we can each still manage to do maybe two things a week.
I hope to return to regular posting activity in a week or two. All my shots have been going well, and I'm healthy. I hope you are too.
Posted by Stephan Terre at 6:38 AM
Sunday, April 08, 2007
This was a four-coffee week. Little Boy is doing well with the nanny and Audrie's back-to-work schedule, but he's also taken to sleeping for shorter stretches at a time. I'm sure that my thoughts are "a little" scattered as a result, but I'm sure this post will still.
It's nice to have a day when you can just let some concerns drop off the table entirely. I don't really have the energy to care how I look on Saturdays. Crazy-haired, stubble-faced, and with a clean but randomly-chosen T-shirt on my back is good enough. Now, I recognize that I'm already biased towards not caring what other people think of how I look, and towards not really caring much myself. If I had a different personality, maybe I'd be writing about how, even if I don't feel great on Saturday, at least I can still take the time to dress elegantly. I suppose the real point is that it's a day when choices become more conscious.
Our three cats have all been needy lately, having not gotten their fair share of attention since the baby came along three months ago. Whenever I sit down for more than a few seconds, one of them will find a way to get onto my lap for some loving. But since I'm don't usually manage to sit down for very long at a time, they are displaced before they're ready. Also, it's warm enough to wear shorts again. The combined result of all this socio-climatology is that I've got a bunch of scratches on my leg where the cats fall or jump off from unprotected skin. On Friday afternoon, as I started thinking about the evening's shot, I realized I was going to have a bit of a hunt to find a patch of scratch-free skin to serve as my injection site. I managed, though, and was even able to use one of the scratches, along with a freckle, to form a little thigh sextant to help me remember the site I had chosen.
My side effects were actually pretty minimal on Friday night/Saturday morning. (Was it the Advil instead of Tylenol? Running the humidifier while I slept? Four-coffee week? Avonex that had been rendered ineffective from getting too cold or too hot? Standard deviation? Acclimatization? Sunspots? Etc.?) But I did have a dream in which J—, a fellow computer scientist at my work, is lying in bed with the chills and fever. I ask him if he wants some Tylenol, and he says no. So I think some part of my soma+psyche was well aware of whatever side effects I was experiencing.
My clever idea this week regarded my "treat" after my shot. Rewarding myself for a successful injection is a technique I learned from the Avonex support materials, and it has continued to be a good idea. Usually I get a cookie or something. This week, I decided to finish reading an article about bad video game covers (note: not completely child-friendly). Something about the writing in this particular article just makes me laugh out loud. I had actually tried reading it during a break at work, and had to stop because I was laughing too hard. At home on Friday night, poor Audrie heard me laughing from the other room and thought that I was crying. She hurried in, concerned, and it took a minute for me to get breath enough to explain.
That's it for this week. Be excellent to each other.
Posted by Stephan Terre at 9:31 PM
Sunday, April 01, 2007
I made a new CD this week. It starts with Regina Spektor's song Fidelity, before going into Enya's Orinoco Flow and Only Time. Then a couple of tracks by Bonobo round it out. With this one, I don't feel rushed. Since relaxation is such a key to comfort with the shots, rushing is highly counterproductive.
Speaking of comfort, my caffeine experiment continued. This time, I didn't have any coffee on Friday (sorry if you own stock in Starbucks), but I still had only minimal side effects. I also had some sweets after my shot, because I had made oatmeal-chocolate-chip cookies (and I foolishly always make cookies that I really like, meaning that I eat a lot of them!). But I did also add something new to the mix. At Audrie's excellent suggestion, I put our good humidifier in the guest room, where I sleep on shot nights. Tylenol seems to really dry me out, and Avonex may too, so I've generally been waking up a lot with a super-dry throat. With the humidifier in there, I slept much better. Leif also slept quite well. In fact, he "slept through the night" for the second time in his life, this time a marathon 6-hour stretch. The kid's a maniac, I tell you. I was so inspired that I napped for a couple of hours during the day just to try to catch up.
In debugging, you often hear "change one thing at a time". This has its wisdom, but if you're really after results, I doubt it's wise to serialize your search that way. For seeking change is a search, and just as in algorithms, changing one thing at a time (linear performance) won't get you your answer as quickly as changing in bulk (logarithmic performance). So if I find some combination of techniques that seems to keep me comfortable after a shot, I will be happy. And then I'll start dropping one thing at a time; otherwise, the experiment turns from science to superstition.
Just as a side note, though: it's hard to really gauge whether you have an Avonex headache if you clonk your cranium on the corner of a cabinet at 8:30 in the morning. So I don't recommend that in the future.
On the matter of swordsmanship, I still seek to extend my proprioceptive awareness into the needle. The last few weeks, I've either forgotten in the moment or just had no success. Last Friday, it seemed like I took a step in my desired direction, though. I didn't yet have a keen sense of the needle, but I was closer, somehow.
Posted by Stephan Terre at 8:34 PM
Tuesday, March 27, 2007
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.
Posted by Stephan Terre at 6:51 PM
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
Saturday, February 24, 2007
Early Friday morning, Audrie woke me up to tell me something was wrong with her. She was experiencing strong vertigo and just not feeling “right” . Both of us thought immediately of how vertigo was the first sign of both of my MS episodes, irrational as that was. It was a rough morning, but after a phone call to the doctor and a few hours of taking it easy, we were pretty sure she “just” had either food poisoning or the flu. I stayed home on Friday, and both of us held our breaths as the hour of my shot approached. But by 8 PM, Audrie was feeling well enough to hold the baby while I wielded my Syringe +1 of Luer-Lock (Interferon), and she’s continued to improve all day today as well.
Remembering the lesson of last week’s lovely ladies and their songs, I put on the song Orinoco Flow by Enya to accompany my shot. Sure enough, I found that my mind had somewhere to go besides to my physical sensations as I injected. It was kind of a strange feeling, as my attention was split, but it was helpful too. Last night I had a headache and some mild body aches, but with the help of plenty of water and a solid amount of sleep, I was feeling not too bad this morning. The baby had kept Audrie up for a lot of the night, so I took him a little earlier than I normally do on Saturdays. I found that it was definitely harder than usual to lift 13 pounds above my head, and I had to move him around frequently as I tired.
My side effects last night were minor, but significant nonetheless, and I wondered if perhaps I had reached a plateau in their steady improvement. Maybe now I’m just bouncing around a fixed point, and the severity is not going to decrease much. All the literature does mention 6 months as the length of time that most people take to acclimate to Avonex. But then I noticed that, by 3 PM, I was feeling nearly normal. It usually takes longer than that. So I’m hopeful that maybe the length of time I experience my side effects will continue to decrease. Later on in the evening, say by 7 or so, my shoulders were starting to ache again, but my strength was still pretty good.
This morning as I was trying to help take some of the burden off of Audrie, I could feel a temptation to just pass the baby back to her and claim I was too tired and weak. I don’t know, but I imagine that Audrie must struggle with that same feeling every Friday and Saturday, when she’s taking solo responsibility for him on too little sleep. And yet, she never complains or shirks. I can only thank her all the more for all her support.
When I look at my little boy, I love him so fiercely that the prospect of anything happening to him stuns me. Then I think of what my own parents must have felt when I told them that I had been diagnosed with MS. Sorry, guys. Next time around, I’ll try to avoid the incurable brain disease. On the bright side, if they do find a cure, you’ll be totally relieved. It’s like the parable of the guy with the hammer.
Today as I was beginning to come out of my achy period, I thought about how nice it is to know in advance that each week, my tiredness and aches will evaporate in just a few hours. It sure makes it easier. I guess a lot of the time, I feel best in the morning, then begin to tire as the day winds down. But Saturdays are nearly the opposite—I feel better midway through. (I guess that’s closer to quadrature phase than to opposite, but this is a family show, and I try to keep the language civil.) What an adventure I’m having. Thanks for coming along with me, and I’ll check in again next week!
Posted by Stephan Terre at 8:19 PM
Sunday, February 18, 2007
If, as they say, life is a cabernet (old chum), then there's no pinot in wining about what's gone by. Happily for me, this week's shot was the Best Ever™, so I have only good news to report.
This was the first syringe with the new luer-lock attachment, which was kind of exciting. Our biggest fear with the old luer-slip style was that we would pull the needle off the syringe by mistake when we were trying to remove just the cap.
As I was preparing for the injection, Audrie asked me whether I wanted to have her and Leif in the room with me, or if she should be in another room in case the baby started screaming. It took me a few moments to make my decision, because I was considering the wrong trade-offs, but in the end I remembered that there is not one thing in this world I would trade for the chance of having my son with me. So that was easy.
W— had come over for a visit, so she and Audrie were both in the room singing to Leif when I did the actual injection. I was amazed to notice that the shot did not hurt at all, and nor did it bleed. L— had told me some months ago that it might help to have music on for the shot, but I had forgotten to try it. I can assure you that next week I'll be playing a CD!
My side effects were slight again on Friday night and Saturday, nothing like the week before when I was so achey. I remembered to have water with me, thanks to Audrie's excellent suggestion to bring in a few bottles from our lactation support stash. I also didn't have any sweets after the shot, opting instead for popcorn with white cheddar (a la Smartfood®, that staple of college life, but Safeway's Organics brand). And I'm sure the singing helped too. Tune in next week to find out whether recorded music works as well as live. If not, maybe I'll hire a Friday night all-singing, all-dancing chorus to take the edge off. But let's not get ahead of ourselves.
Posted by Stephan Terre at 5:21 PM
Sunday, February 11, 2007
This week was a step back, as far as side effects go. The shot itself went perfectly well. Audrie administered it again, and again was in and out in the blink of an eye; nor did it hurt. But in the middle of the night, I awoke with aches in my head and joints, and feeling cold. It wasn’t chills exactly, just kind of cold. Compared to last week, which was about the best ever for side effects, this week felt like a throwback. Of course I’m looking for causes.
Guess 1: My big mug broke a few weeks ago, and so, although I hydrated well during the day, I didn’t have a big reservoir of water on hand at night. Maybe I was dehydrated.
Guess 2: I had a bunch of cookies after my shot. I have a vague notion that sugar and alcohol are metabolically similar; the Avonex side effects feel a little like a hangover; and I know doctors keep a watch on the liver function of patients on interferon products. Whatever the connection, maybe a bunch of sugar after my shot is a bad idea. Last week, I had not had any sugar after my shot, even though I had eaten dessert after dinner, and my side effects were minimal.
Guess 3: Maybe variations in the injection site lead to variations in my response. Maybe different sites absorb the medicine differently.
Guess 4: Maybe it’s just different every week, and all I can hope to predict are trends.
Saturday morning, we had to get up early to go pick up Audrie’s new car. This was Leif’s first big outing, and my first chance to change a diaper in a public restroom. The hard surfaces in that room sure magnified my little boy’s big cries to giant-sized proportions. I felt a certain amount of pressure to be elsewhere or otherwise from the other people who came into the restroom while I was changing my son, but most people also made some sort of positive comment. Every day is an adventure. And after feeling bad Friday night, the mundane chore of helping to take care of my little boy during the night on Saturday seemed much easier—even though I was tired, I felt well. Saturday night and today (Sunday), I felt better, as usual.
I think I’m beginning to be able to feel the subtle side effects of Tylenol itself. I take two pills a couple of hours before my injection, and I start being able to feel something within an hour. I can’t describe it, and maybe it’s just anticipation of the shot, but it’s definitely there.
As for my weekly dose of something-to-worry-about, this week I had two. First was our ever-present trade-off between me helping with Leif and me getting enough sleep in the hopes that it will avoid an exacerbation. Audrie sent me off to the guest room to sleep one extra night this week because that worry was looming large (not out of any symptoms, just in the way that worries come and go). As I’ve read in many other places, one of the worst things about MS is its unpredictability. You never know when or how it might relapse.
The second is about immunizations. I was reading in one of our baby books about the usual schedule for childhood immunizations. It mentioned that certain vaccines, such as the live polio vaccine, present a risk to adults with suppressed immune systems. Mine is not suppressed per se, just “modulated”, but I still need to make some phone calls and do some research to find out if I need to take any special precautions.
The weather in Tucson this weekend was strikingly beautiful. My little boy is even more so. How grateful I am to have these days given to me in which to live and enjoy the world. I hope you all are well. I’ll check in again next week!
Posted by Stephan Terre at 10:20 PM
Friday, February 02, 2007
When I opened my Avonex journal today, Audrie and I were both surprised to discover that I have been on the therapy for six full months. By this time, my flu-like symptoms are supposed to have subsided significantly, and they have—as has my discomfort with the shots. Tonight was also the first time Audrie administered my injection since our wonderful son was born. Unfortunately for her, it was a minor comedy of errors, though she handled it all with great aplomb.
We had dinner at my mom’s & stepdad’s second home here in Tucson, where my aunt and uncle are also staying for a few days. It was a fun night. I had forgotten to set out my syringe before dinner, so when we returned home at around 8:15 (shortly after my usual injection time), I had another half hour to wait while the elixir warmed to room temperature. Since my mother-in-law, a.k.a. Grandma Shauna, is staying with us for a couple of weeks to help with the baby, Audrie was not occupied with Leif, and volunteered to administer my shot.
As we started setting out the various material components of our weekly ritual, we heard Little Boy start to fuss in the other room. At exactly the same time, I heard one of our cats making that ever-so-evocative gagging sound that presages clean-up duty. We learned after everything had calmed down that one of the cats had constructed a clever booby-trap immediately outside the bedroom door, no doubt hoping that one of us would run to the aid of our infant son and, distracted by our concern, fall victim to the snare. Grandma Shauna had our backs, though, and hurried to the rescue, meanwhile attempting to soothe Lung Capacity Lad as his wails escalated in both pitch and volume.
Audrie remained focused despite the clamor just outside the door, and did her usual excellent job of injecting my medicine. One of my mid-level thigh muscles twitched just after she stuck the needle in, and didn’t relax until she had withdrawn it, which was somewhat painful; I’m sure my sudden intake of breath did little to calm her. But the needle was in and out in a jiffy, with nary a drop of blood to be found anywhere (making the placement of the little square Biogen-Idec bandage rather uncertain), and then my lovely wife exited after a quick kiss to assess what level of catastrophe we were facing.
Six months! I wonder what it will be like to look back at my little journal and remember when all this was so new. If I am very fortunate, perhaps someday I will find it in a save box and recollect the time before there was a cure for MS. I’m not sure whether it actually counts as a step towards a cure, but two weeks from now, I’ll start using the syringes with the new luer-lock connectors instead of the current friction-fit ones. Even such a small improvement is encouraging. Hey, even if they don’t find a cure, maybe they’ll develop nifty flying robots to do my weekly injections, perhaps while simultaneously quoting Shakespeare and mixing up a delicious chocolate milkshake.
Posted by Stephan Terre at 9:59 PM
Saturday, January 27, 2007
I can tell I'm making progress. A few months ago, I did not feel as good as I do this morning until well into the evening. If it weren't for the lingering side effects of the cold I had this whole week, I would say that I feel basically well; and if it weren't for the fact that it was hard to hold my baby this morning, I would say that my strength was almost at full. I believe that I will probably still need to X out Saturdays for any major activity, but if this is how things stay, I will be satisfied. I don't feel comfortable going into work when I feel like this (not that I advocate working on the weekends in any case), because I do still need to take frequent breaks and occasional naps. I can run to the grocery store, though, or sit with the baby, do some writing, watch TV, read.
Last night's shot went smoothly, or so Audrie reports. My personal experience, I'm realizing, is different than what is visible on the outside. No news here, I suppose—appearances are always incomplete—but it means that I really benefit from Audrie's interpretation of events. SHe can't see the feeling of the needle, but neither can I see how it goes in, because I am so distracted by the feeling.
I have a Google News Alert set up for the keyphrase "multiple sclerosis". The news has been slow recently, but yesterday I was suddenly bombarded by five full pages of links to news about research, blog entries like this one, and new announcements from the pharmaceutical companies. Thankfully, there was neither any spam nor any pornography lurking in the alert; Google does a good job.
I need to call Walgreens for my next refill. Soon, possibly as soon as my next shipment, the pre-filled Avonex syringes will have a new needle-locking mechanism. Our main worry still is not getting the needle firmly-enough onto the syringe, so hopefully this will overcome that worry and we'll be as carefree as a slumbering babe.
Speaking of both slumber and babes, Audrie once again took all the baby duties last night so that I could sleep the whole night through. I'm sure that stretch of sleep was a key ingredient in my current well-being. Once we start supplementing breast-feeding with the occasional bottle, maybe I can return the favor.
Posted by Stephan Terre at 12:45 PM
Friday, January 19, 2007
Just a quick note tonight. Tomorrow I want to report on side effects again. Our friend W— was over when it came time for tonight's shot, and I invited her to observe. I like being able to bring other people along with me on this MS journey
of mine. She noticed that I marked my comfort with the injection as a 5 (comfortable), even though I had said that it hurt more tonight than usual. Say what?
I've been pleased to find that my weekly shots are becoming more and more just a part of my routine. At first, I was often very tense beforehand, or nervous that I was going to forget a step and do something wrong. Now it's becoming a lot more natural to prepare everything, do my shot, write up some notes in my Avonex journal, and move on with the evening. Thus, it is comfortable, even if not painless.
I expect that the shot itself will always hurt, whether more or less. I dedicate the pain to the altar of Intention, for it reminds me that I am on a road which leads not to security, but only towards hope. May each week's prick refresh my intention and strengthen my mindfulness.
Posted by Stephan Terre at 9:11 PM
Friday, January 12, 2007
Turns out that last Saturday was actually the perfect time for my son to be born. Audrie's labor started at about 1 AM on Saturday morning, and Leif was finally born at about 5:30 PM on Saturday by C-section. So during the entire time when I was experiencing my side effects, I also had plenty of adrenalin to keep me going. There were a few times when I had to sit down or when I could feel my aches in the background, but for the most part, even with only 2 hours of sleep, I felt okay. Then, once he was born, I had the longest possible time to get to know him, and for us to fit him into our lives, before I had to do my next shot (this evening).
Tonight's shot was another 5 on the 1-5 comfort scale, and was the first time doing my injection with a baby in the house. We've been learning so much about how to be parents that even yesterday would have been noticeably more difficult than today was. Because we've both been so tired, I was glad that we read the directions before every shot. And I did almost try to inject myself without taking off my sweatpants first. But this morning I tried to put my shoes on before my pants, so it's par for the new-baby course.
One new challenge will be keeping track of shot days even while dealing with all the new work of parenting. I have a hard enough time remembering what day it is when I'm solidly in a routine, much less with new challenges arising every 5 minutes! I wonder, also, what my boy will think of his dad's weekly injections. He won't know any time when it was different, so I'm sure it will seem totally natural to him.
We banked some of the baby's blood at the Cord Blood Registry. Maybe someday they'll find a way to use stem cells to cure MS or its effects. If so, there's a 50% chance my son's blood will be my cure (because there's a 50% match his blood is a match for mine). Or maybe someday my boy will be able to avoid a disease of his own, thanks to this investment.
Before today's shot, I commented that now I have one more reason to take this medicine every week. I looked at my sleeping son in my wife's arms after the shot was over, then held him for a few minutes and felt grateful to have this chance to get to know my little boy. For however long I stay healthy, I will cherish every minute I get to spend with him. And should my disease ever progress to disability, I will strive to show him by example how to let nothing stand in the way of love and hope. I pray that day is far away.
In the meanwhile, I have more immediate things to concern me. Tonight, I will be less able to help with midnight diaper changes or to sit with the baby for a while so Audrie can sleep. And we are both concerned about my own sleep. A new unwelcome choice arises: do I try to sleep enough, even though there's a new baby in the house, to try to avoid a stress-related MS flare-up? Or do I help out as much as is needed, but risk trading today's one hour of availability for weeks of absence in the future? In the short term, we have some help in the form of family, friends, and a hired doula. But I don't know what will happen beyond that, as our son grows into an active toddler and little boy. But this is just a fearful shadow. There is no point speculating overmuch. For now, we are just doing our best to attend to today's needs and to support each other as well as we may.
Posted by Stephan Terre at 8:40 PM
Friday, January 05, 2007
There are several times over the next day or so that would be especially inconvenient for the baby to come. One was today (Friday) at about 7:45 PM, right before my shot. We had a plan for getting my Avonex to the hospital and finding a place for me to do my shot there, but I am happy to report that it will not be necessary: we just did my shot and all went well. In fact, I even, after much deliberation and for the first time, marked my comfort with the injection a 5, "comfortable", on the comfort scale from 1 to 5 in my Avonex journal. All the recent ones have been 4s, but today I felt relaxed and calm right up to just before the injection itself.
Now the next-most inconvenient time range for the baby's arrival starts in three or four hours and lasts until about noon tomorrow, as this is when I'll be suffering the strongest side effects. He missed his first window, but the second one is bigger and he may have an easier time hitting it. If not, then heck, it's all a bed of roses! Well, except for minor details like the usual trials of childbirth…
Audrie and I were commenting on how next week, there will be a baby right there in the room with us when it's shot time. How exciting. If I'm sane and awake enough to operate a computer, I'll be sure to let you know how it goes.
Posted by Stephan Terre at 8:22 PM