Electrical Disturbance

Electrified

2011-10-25T19:17:00.000-07:00

On the first of the month, our house was struck by lightning. Everyone is fine, although we did have a number of appliances and devices damaged. Our insurance is doing a great job of helping us with the repairs and replacements. None of that is what this entry is about.

My wife and I were both shocked, she at the sink and I at my computer. Our son was in the middle of a room and was unaffected. My own experience was that I saw a really bright flash, saw sparks out of the corner of my eye, heard a boom, and yelled as if I had been struck in anger. The the speaker started going lub-lub-lub and the computer started politely chiding me about not ejecting devices properly.

In the aftermath, I found two stories repeating themselves in my head. First was, “cool, I can put Struck By Lightning on my resumé now!” Second was, “wouldn’t it be great if the shock cured my MS?”

I continue to do well on Avonex. The side effects each week are 24-36 hours of feeling various shades of blah, manageable with Advil. I continue also to seek a low-stress lifestyle, eat many vegetarian or vegan meals each week, see an acupuncturist, exercise moderately, and see an osteopath regularly. Oh, and supplement with Vitamin D3. I have been in remission now for a little over 5 years. I am very lucky. But one of the first thoughts through my head in this circumstance was to wish to be rid of MS.

“Incurable” and “life-long” mean one thing in your first year of hearing them. Turns out they mean something different 5 years in. And, whether my luck persists or not, they will mean something different in another 5 years. Here’s to you, my friends, and to the journey.

A Nearly Balance

2008-09-14T10:55:00.002-07:00

All is well in the Land of Stephan. I have dropped nearly enough extracurriculars and hobbies to be caught up a lot of the time—or, at least, not to get more than 2 months behind on bills. I am sorry that writing is one of the things I have dropped, but it is, and there's no point stressing myself out by feeling bad about it.

I still seem to be in remission from MS. I've moved my shots to around 4 PM on Saturdays, because I don't start feeling the effects for about 4 hours after my shot, and we go to bed around 8. The effects last for about 36 hours total after my shot, and continue to get slowly milder.

I've started taking yoga, which I believe, even after just a few classes, will be good for me and support my continued remission.

I have occasion every day, or every couple of days if I'm busy, to feel deeply grateful for my circumstances. When Leif, at 20 months old, says "I'm grateful for Daddy" before supper, I can truly find nothing to complain about.

So for the next few years, I expect to post very seldom, but I expect as well that it is because I am too busy with the happy duties of parenting. I hope you are similarly too busy to read this blog anyway.

Weeks?

2008-04-19T20:16:00.003-07:00

I've never really had the experience of time flying by in the way that some of my friends have. As I get older, and my life fuller, time seems to move slower some days, if anything, not faster. So I cannot blame an accelerated time sense for long lags between posts. I guess I'll just have to stick with the "I'm busy" excuse.

When I was in high school, every Monday the principal would get on the PA and say, "It's Monday – the greatest day of the week!" Of course I thought he was a dufus; I was in high school and thought pretty much everyone was a dufus. Since moving my shots to Saturday, though, it's become true for me that Monday is an especially good day. It's the day farthest from the day I feel the worst, and the first day after my Avonex hangover that I feel fully good again. Viva Monday!

Last week, for the first time since I started Avonex, I did a shot in the position near my knee without it hurting. What's my secret? A little thing I like to call, "finally bothering to pay attention." I was feeling around on my leg before my shot last week and realized that, close to my knee, there's a band of muscle about an inch wide that's tenser than the rest of the top of my thigh when I'm sitting down. This tense band is where I had been injecting, so no wonder it hurt. I moved a half inch to the side and had a nearly painless shot. This week was my left leg near the knee, and it worked again. I'm excited that now I won't have to dread 2 weeks out of every 6 as being more painful than the rest.

Leif is 15 months old and starting to talk more and more. He now says "shot" and "band-aid" when he sees me getting ready for my shot. I have mixed feelings about this.

2008-03-08T20:57:00.003-07:00

In the summer of 2006, I had just purchased some Burt's Bees Hand Salve, which I really like. It has a strong odor, but one I find pleasant, and it works well for me. I took it with me on my work trip to Denver in August, which I expected to be busy but pleasant overall. Instead, it was on this trip that my first MS symptoms hit, and I was holed up in my hotel all week, feeling terrible, constantly dizzy, venturing out only for the times when I absolutely had to work. The smell of the hand salve is now associated with that time, and though it may seem a little thing compared to everything else that comes with having MS, I regret that such a once-wonderful smell now always has echoes of that bad time.

I recently formulated a brilliant plan to reinstate the hand salve in a place of olfactory honor: I would simply start using it again (the same tin is still nearly full), and eventually all the pleasant associations constantly arising from daily life would displace the bad. Tonight I almost put on the salve as part of this plan, but then realized that since it's shot night, I'll be feeling pretty bad for most of the night anyway; adding achy joints, a headache, feeling cold, and weakness to the association pool is…probably not the best way to redeem the salve.

I had my annual physical last week. My doctor said, "keep on doing whatever you're doing"—positive indeed! But, does that mean that once the baby gets old enough that I'm sleeping regularly, and is able to entertain himself enough that I can start exercising again, that I will slide immediately into ill health?!?

Seriously, I do hope that my regime—of regular acupuncture and osteopathic rectification; a nearly-vegan diet (inspired by The China Study as well as by conscience); eventually, a return to the study of Tai Chi; various spiritual hygiene such as wonderful friends and family—will prove a healthy one for the long term. I suspect that its only serious imbalance right now is a sad paucity of video games. Meanwhile, my cholesterol, which the Popular Media has assured me is the only number that is important for health, is slightly better than both my bowling and my golf score, at 145. Hmm…is Avonex supposed to be good for cholesterol?

Okay, I promise I had something interesting to say when I sat down to write tonight, but for the life of me, I can't recall it. So if you come across something really cool this week, just pretend that I wrote that instead, and my work will be done.

Oh, also, check out the Carnival of MS Bloggers, or maybe start at this post by its founder, Lisa Emrich: there are at least 136 other people blogging about MS this very instant! So you're bound to find something interesting on the subject. Or at least on what it touches, which is nothing less than life.

The Names of Things

2008-02-16T20:04:00.002-07:00

I really am trying to follow the Flickr community guidelines and link back to the photos pages for the pictures I post here, but each week I run into some snag or another and eventually give up. At least this week I'm stealing my own photo rather than some stranger's who deserves better.

I'm glad I decided to have my surgery on Monday rather than the doctor's more usual Thursday. Just today I started feeling enough better to tire myself out doing chores at home. If I'd had my shot even yesterday, I think the hangover would have been quite unpleasant.

I forgot to mention last time that the anesthesiologist for my surgery was the same guy who gave Audrie her epidural when the baby was born. He had done a good job then, so I had a good feeling going in. Then I got to put my head on this cool jelly donut thing before they knocked me out. I don't remember the early part of recovery, but the nurse said I started pointing at various objects and naming them solemnly. "Sliding door." "Light." Huh—I am my son's father for certain. That's what he does all day long.

An excellent shot tonight, painless and in the company of my beautiful wife and son. They're both slightly sick, though, so I'm still sleeping over at my mom's to avoid getting a cold lodged in this healing nose of mine. In a few months my schnoz will be a paragon of structural perfection, sustaining constant Mach 5 airflow that's more laminar than a warehouse full of Pergo. But for now, I am still not cleared to pick up the baby for fear, I suppose, that my nose will pop off like a Muppet's; and I'm pouring or squirting what feels like gallons of nice salty solution up there every day while it heals. Refreshing.

I am doing wonderfully and I hope that you are even better. Tune in next post for more exciting adventures of…The Man Who Writes This Blog!

Re: Covering

2008-02-15T09:26:00.002-07:00

Last Saturday, I felt like a single man for a while. I didn't like it. Audrie was at an event, and the baby was at my mom's house so I could do my shot without having to corral a 1-year-old at the same time. All alone in the house as I set out my elixir and accoutrements, I had a flash of what it would be like to have no help or companionship on this particular journey. Then, happily, the illusion was spoiled by Audrie calling to tell me she had arrived safely. This set off a minor comedy of errors in which, after washing my hands again post phone call, the phone began instructing me in how to make a call just as I was done with the alcohol prep. Then, deciding that I was too much of an imbecile to make use of its instructions, it settled for just beeping at me insistently to let me know it was off the hook. I vacillated a while, then had resolved to ignore it and proceeded, not wanting to go hang it up, wash my hands yet again, and find another alcohol prep, when it finally gave up the effort altogether and fell silent. All in all a good shot.

Monday, I had a minor surgery called Septoplasty with Turbinate Reduction; the latter, alas, having nothing to do with dual overhead cam turbo-injected POWER. The goal of the surgery is to repair the damage to my nose from a car accident 20 years ago, thereby improving my sleep efficiency and reducing my snoring. Sleeping better is good for everyone, not just us MSers, and less snoring will benefit the entire household as well, I assure you. It'll take a couple of weeks for me to have recovered enough to check on the results. In the meanwhile, I am unable to help much with the baby—even to lift him, for now—and so it is Audrie who now feels like a single parent. We've got some help from family, but it's still a rough gig. I know there are plenty of you out there who are single-parenting with active MS symptoms, and I just have to say, hats off to you.

With the week off from work, my only real job the last few days has been to get better as quickly as I could. This is progressing well, and look! There's even time for a blog post. Huzzah.

'Ware the Foxloxians

2008-02-02T20:51:00.000-07:00

Today I went to a friend's daughter's 3rd birthday party at the park near our house. Little Boy had fun watching the bigger kids do all the amazing things they can do, like run. When we returned home, Audrie and I realized we had completely forgotten it was shot night, so I was a bit late getting the Avonex out of the fridge and taking my prophylactic analgesic. It's really nice to be able to forget about my shot (especially since I've never yet been in any danger of missing it altogether). When I started on Avonex, it was such a big deal, such a major change, that forgetting would have been impossible. Now it looms smaller in my daily landscape.

I called the neurologist on Monday morning to set up an appointment after missing the one the previous week. I was able to get in that afternoon, and thus far all looks well. I have not received the results of my blood work, but the doctor was very positive about my continued remission. And my phlebotomist was a fellow fan of The Nightmare Before Christmas, so we had a nice chat.

I've gotten accustomed enough to my current CD/playlist that it's serving its intended purpose of distracting one part of my mind while I prepare for my shot. I'm still starting with quick self-hypnosis while playing the CD. It's taken a long time to get used to the change (I'm too lazy to go find the post where I switched out the first song, but it's been a couple of months). Good to know if I change it again: it may take a while to get back to full relaxation.

Tonight feels like old times again, because I'm taking Tylenol instead of Advil to manage the side effects of Avonex and I'm out here in the guest room, writing and preparing to sleep here. I'm having a minor surgery called a septoplasty in a couple of weeks with the goal of reducing my snoring and improving my sleep efficiency, last measured at 80%. Ibuprofin is a blood thinner in addition to an analgesic, so it's off the list for a few weeks before and after the surgery. The difference, compared to old times, is that now the baby's been born. I am grateful every day that I can carry him around (back's doing fine, btw) and play with him, because it's no longer something I take for granted. Audrie and I have a practice of telling each other something we're grateful for at each dinnertime, as a kind of Grace that appeals to us, and this body's continued good functioning often heads my list.

My current hobby is shopping for a digital camera of the "SLR" variety—that being the kind that can take a picture of what you're actually looking at, rather than of a few seconds later like my current point-and-shoot. I do have plenty of good pictures from the little camera, mind you, tonight's once-again-borrowed-from-Flickr image notwithstanding, but when it comes to catching the baby doing things I think are cute (and, being entirely unbiased on that subject, I'm certain that you would think they are cute too), a long shutter lag is a constant frustration.

I guess it has taught me the interesting fact that a few seconds after a smile, my son usually has a dopey look on his face.

Maybe I should conduct a study of smiles and learn whether this is a common human trait, then apply for an NSF grant to look into it further, and eventually discover something really deep and meaningful about the human condition. Like, maybe, that when something reaches its maximum, it immediately begins to turn into its opposite. Oh, wait, no, that's the basic principle of yin and yang. How about, that trying to sustain happiness or avoid unhappiness leads to suffering? Oops, no, someone else said that a while ago too. But anyway, the point is that the NSF should give me a really big grant and make me rich.

The humorous thing about my clever plan to get a better camera is that I often have 0.0 minutes per day to do anything but the basics of living and taking care of the baby. Paying the bills on time remains a challenge even with the baby at age 1 year. So where would I find time to read the manual and take pictures? Every other weekend, I suppose.

It was a beautiful windy day in Tucson today. I enjoyed it. I hope your day was as good.

Two in a row

2008-01-26T21:00:00.001-07:00

If you're going to strain your back while lifting up your baby, I recommend doing it on shot day, since you'll be taking Advil all night anyway. Just a thought.

So I admit to being somewhat miffed. It's almost like there's a network of tiny sensors just beneath my skin which is designed to grab my attention sharply whenever something impinges on them. Whatever they really are, the damn things make it so that my shots hurt some days, today being one of them.

I've been mildly clumsy the last few days, nothing major but just dropping things a little more than usual. I think I'm probably just a little out of whack (that's a technical term), and being sleep deprived is unlikely to be helping. But as always with such things, I get a little mental picture of a white spot on an MRI getting just a tiny bit bigger.

My current scheme is to learn to feel my spine from the inside of my body, to know where it is and how it is oriented in the same way that I know where my arms and fingers are. Hare-brained or brilliant? You decide! My goals are improved posture, less back pain, and the plain fun of it. The thing is, I wonder whether in the short term I'm moving differently enough from this experiment to have led to this morning's strain when I picked up the baby. And this is probably totally why I've been clumsy too. My acupuncturist, upon hearing the plan, suggested a technique from medical qigong that entails feeling and moving each vertebra individually, up and down your back. That's going to take some doing, I imagine, but to start, I'm just thinking of the whole thing as a unit, like a third arm that's not very good at picking things up or ringing doorbells.

I had an appointment scheduled with the neurologist last week, but through sheer bone-headedness I forgot about it entirely until several hours after it should have been over. I haven't had time yet to get it rescheduled, so no interesting news on that front.

Not much to say tonight, I find, so I shall simply suggest: Good Night!

Welcome to 2008

2008-01-19T21:37:00.000-07:00

Audrie wondered aloud to me today if we would ever catch up—the days are so full of caring for the baby that our lists grow stale and ever longer. I imagine that, if Leif moves out at age 18 or so, it should take no more than another 18 years to catch up after that, so we're sure to caught up by the time I'm 71. Glad that's settled.

This blog is about my adventures with MS, not about my many other thrilling escapades, so I shan't excite you with much else tonight. But there is still plenty to tell. Actually, I'm pleased to report that there's little enough about MS proper; it's more about coping with the interferon therapy (Avonex). I'll see the neurologist sometime in the next couple of months and maybe have more news then.

We traveled to Utah in December, where my in-laws celebrate Christmas, and to Idaho, where Leif's great-grandparents live. The most humorous thing about Idaho, which is where one of my shot days fell, had to do with the cold. In Tucson, if it's not Too Hot, it's generally Pretty Nice. You don't worry about leaving stuff in your car for the mild months of winter. In Idaho, there is a third season of Too Cold. When I found that the Tempurpedic brand sleep masks and slippers, which I splurged on back when "disposable income" was not a clever way of spelling "diaper", had frozen while sitting out in suitcase in the car, I worried that my Avonex had also gotten too cold and been ruined. It likes to be kept between 36 and 46 degrees Fahrenheit, according to the informational insert, and Too Cold is markedly below 36. But as it turned out, the Avonex had been in a different car and there was no worry after all. It is a little surprising to put on your slippers and find them, not warm and soft, but chilly and as solid as Tamilee Webb's remarkable abs.

The instructions for Avonex have changed with the new luer-lock attachment, and I did not have to keep the package carefully refrigerated on the plane etc. That was nice. I got into trouble on the way back, but it was because I had forgotten to take my cell phone out of my pocket at the security checkpoint. And my wallet. And my Palm Pilot. And my Space Pen. Anyway…

Audrie also pointed out that I can take Advil every 4 hours if I want, rather than waiting 6, and so shot nights have been much less achy lately. I still find that I'm weak the next day—not feeble, but not able to hold the baby for long or to wrestle giant squids with as much vigor as usual. (Okay, it's awesome what you can get if you type random phrases into Google. Just make sure you have SafeSearch turned on to avoid the dross.)

I could ramble for hours, but then I'd be grumpy tomorrow from lack of sleep. So I merely wish you the best of all possible days, and promise that I will check in again as soon as I am able.

This could be a blog post

2007-12-08T21:19:00.000-07:00

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!

Little Boy just started getting really interested in walking today. He several times walked 4-5 feet at a time, toddling happily on his (objectively measured as such) adorable little feet. His enthusiasm is always inspiring. Never mind incurable brain diseases, Dad, check this out: I can move around using my feet alone!

My lovely and patient wife pointed out to me recently that I can actually take Advil every 4 hours if I choose, rather than waiting 6 as I have been. Avonex-hangover days might get a bit lighter soon; tonight is the first time I will be putting the accelerated schedule into practice.

In my copious spare time, I've been reading a book called Mindfulness by Ellen Langer. It's well-written, interesting, and useful, though I would not suggest that it be the only book one reads on the subject. I just read the description of an experiment in which people were given everyday objects that were described in one of two ways: either absolutely, as in "this is a dog's chew toy" or flexibly, as in "this could be a dog's chew toy". Those who were given the more flexible descriptions were better able to reinterpret the objects at hand for new uses; for example, using the rubber chew toy as a pencil eraser when need for an eraser arose.

I've been having fun saying "this could be a…" about all sorts of things since reading this. This could be a Kleenex, or a doll's tablecloth, or a flag, or a booby trap, or a murder weapon, or a hat, or earplugs, or… Try it, it's fun. I think I may get the most out of the technique by applying it to less tangible things. At work: "this could be a dysfunctional team". Saying it that way reveals other possibilities. This could be a group of people doing their best. This could be a chance to practice team building. This could be a situation comedy. And what else? Many things, no doubt.

Or try this one: this could be a serious, potentially disabling, disease.

Maybe it could also be a helpful daily reminder to celebrate the miracle that I draw breath after breath, that my heart beats, that I am in this life at all. Maybe it could be a chance to connect with others. Maybe it could be the perfect excuse to finally go part time after waffling for 8 years. And as I am in a cheerful mood tonight, I will leave it at that. There are darker possibilities too. But just taking the opportunity to be creative in my relationship with MS seems like it has got to help.

I hope this letter finds you well, and I will write again as soon as I may. Until then, may I recommend Dinosaur Comics?

November Rocks

2007-11-03T20:50:00.000-07:00

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.

Fall is Here

2007-09-21T21:20:00.000-07:00

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.

Is it Fall yet?

2007-09-13T08:14:00.000-07:00

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.

Mischief Managed

2007-08-31T20:36:00.001-07:00

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!

Rainy Sunday

2007-08-18T12:34:00.001-07:00

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.

Thanks

2007-08-12T09:00:00.001-07:00

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.

Smorgas of Borg

2007-08-03T18:17:00.001-07:00

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.

11 months of Avonex

2007-06-29T20:46:00.000-07:00

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.

The In Crowd

2007-06-24T06:04:00.000-07:00

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.

A Thursday Farce

2007-06-02T16:18:00.000-07:00

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.

Catching Up

2007-05-28T11:29:00.000-07:00

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!

Birthday Shot

2007-05-28T11:16:00.000-07:00

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.

The Madness of King Walgreens

2007-05-06T20:33:00.000-07:00

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.

Nannyless

2007-04-21T06:38:00.000-07:00

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.

Short Consequences

2007-04-08T21:31:00.000-07:00

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.

The Curious Case of the Missing Title

2007-04-01T20:34:00.000-07:00

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.

Happy Spring

2007-03-27T18:51:00.000-07:00

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.

Coffee, Sweets, or Sleep?

2007-03-18T19:22:00.000-07:00

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!

Flip Sides

2007-03-13T22:34:00.000-07:00

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.

Adventures in Babylifting

2007-02-24T20:19:00.000-07:00

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!

The power of song

2007-02-18T17:21:00.000-07:00

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.

2007-02-11T22:20:00.000-07:00

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!

Six Months

2007-02-02T21:59:00.000-07:00

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.

Cold Virus vs. Interferon Beta 1a

2007-01-27T12:45:00.000-07:00

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.

Framing

2007-01-19T21:11:00.000-07:00

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.

Perfect Timing

2007-01-12T20:40:00.000-07:00

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.

Timing is Everything

2007-01-05T20:22:00.000-07:00

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.

Almost Happy New Year's!

2006-12-30T19:57:00.000-07:00

Another benefit of having a care partner is that if, for whatever reason, my shot hurts some weeks, I won't flinch with a needle in my hand. Don't know why, but yesterday's shot, although it went very smoothly and Audrie did a great job, was pretty painful. I guess I picked a spot right on top of a nerve or something. All of our cats have demonstrated an uncanny ability to find a recent injection site and walk right on it. The grey cat proved her insight yesterday and this morning, repeatedly.

Side effects were in line with the usual today. I went over to a friend's for a few hours and spent some low-key time playing Dungeons and Dragons, for what I expect is the last time for at least a few months. It's now four days until the baby is due. We found out that I probably had MS four days after we found out Audrie was pregnant, so it feels like some kind of symmetric milestone. It's been quite a journey so far, but mostly a good one. I look forward to the many new experiences that await me in the coming year.

A crowd of thoughts

2006-12-22T21:07:00.000-07:00

Here's another great photo from Flickr. Our camera's packed to go to the hospital (baby's due in 12 days!), so I'm especially glad of other peoples' pictures right now!

I've had a ton of thoughts the last few weeks that I haven't had time to catch here on the blog. Like the proverbial fish, I'm sure they are grander in my imagination than they would have been if concretely realized, but I still regret not posting them. It's helpful to come back and look at my own thoughts after enough time has passed that they seem like someone else's.

Even though I do not recommend that you get MS, I believe that in my case, the last few months have helped me prepare for my son's arrival. By shaking me loose from my assumptions about my life, my diagnosis has given me a broader perspective. I think I'm more flexible now than I was this time last year. I feel gentler, and more ready to engage with this new person who's coming.

Last Saturday, we got up early (for a Stephan post-shot day) and went to a 6-hour birthing class that started at 9 AM. For the first couple of hours, I was in enough of an altered state to feel kind of distracted and spacey, but I was still able to pay attention to the class. Then I took some Tylenol and my side effects basically disappeared; the rest of the day felt almost like any other day.

I noticed at last week's shot that I could feel a deep muscle in my leg tensing up. The surface muscles are pretty well under my conscious control (although they still tighten up right before the injection), but this was a muscle that I never normally feel. I hope to gain a better and better awareness of my own structure, and eventually to be able to feel and relax those deeper muscles. I say "deep", but it's still only an inch under the skin. And you know what? I don't need to get accustomed to needles that are any longer than that. I'll be perfectly satisfied with an awareness limited to one and a quarter inches into the top of my thigh, thank you!

I made a point of conditioning a relaxation response this last week. Whenever I thought of it, I would imagine myself doing my injection on Friday night, and I would imagine being relaxed. I hope to make my first reaction to the sight of a needle one of relaxation, not one of tension. Tonight was promising; I'll keep it up and let you know how it goes.

Our family has been giving charitable donations as gifts lately. Last year at Christmas, we gave each other gifts of donations to Heifer International, domestic abuse shelters, education funds, and that sort of thing. Each year, I imagine that our family's focus will change a little—for example, this year we gave a little more to breast cancer research and wildlife causes—but the main point remains. I'm trying to decide what to ask Audrie for. (She wants a donation to Hawkwatch.) One obvious choice for me is a donation to MS research; but when I think about all the other people with MS, and I think about my own uncertain future, I feel very sad. I might not be quite ready for that gift yet. This year, I'll probably ask for something happier.

Two For One!

2006-12-02T22:38:00.000-07:00

Mysteriously, the little control that lets me upload photos so nicely has disappeared today. Oh well: welcome to today's superchic retro-tastic TEXT ONLY blog posting!

"Why no post last week?" I hear you ask. Well, I'll tell ya. I've been busy most evenings painting the laundry room. It's been fun to enjoy using my body to do good work. MS or no, at some point in our lives, we lose the faculties of our bodies (remember, if you've been raised from the dead as a zombie, it's not really *your* body any more). Each chance I get to feel the stretch of my limbs and make something with my hands is a priceless gift.

I got to share last week's shot with my two brothers. I was hoping to show them how easy it has become, but managed to hit a blood vessel of some sort and leaked a lot more than usual of my red gold, vampire tea; blood, that is. Not enough to make anyone faint, but enough to give the lie to my implicit message that these injections are no different from taking a pill. My Avonex side effects were also pretty solid last week, though still much reduced from the first month!

As you might expect, with no one but my lovely wife watching, last night's shot produced not even a single drop of blood, and today's side effects are pretty much the lamest ever. I guess the Spirit of Flu-Like Symptoms is too busy this time of year visiting people who actually HAVE the flu to get around to my house every week. Not that I feel rejected, mind you. If it doesn't want to call, that's fine. No sweat off my teeth. Nope. I'm actually happier this way. Really.

Comedies

2006-11-18T23:01:00.000-07:00

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.

Eleven Eleven

2006-11-11T22:43:00.000-07:00

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.

Happy Dancing Thursday Time

2006-11-09T21:25:00.000-07:00

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.

MeSmerized

2006-11-04T20:34:00.000-07:00

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.

Connections

2006-11-03T20:03:00.000-07:00

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!

Islands

2006-10-28T19:51:00.000-07:00

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.

Distraction

2006-10-24T21:34:00.000-07:00

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!

Adequacy

2006-10-15T20:48:00.000-07:00

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.

Got Physical?

2006-10-13T21:20:00.000-07:00

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.

Safe and Sound in AZ

2006-10-08T17:42:00.000-07:00

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!

Wednesday in Utah

2006-09-27T20:44:00.000-07:00

We went to a seminar yesterday (Tuesday, 9-26-2006) about MS, given by an MS specialist from Phoenix. It was sponsored by Biogen Idec, the makers of Avonex, but it appeared to be entirely unbiased; the doctor had good things to say about all the therapies on the market. Among other things, we learned that there is no known risk of Avonex causing any problems with us having another child (if we want to). That was nice to hear.

The side effects from my last shot were once again somewhat less than the previous week. I even managed to open a new jar of spaghetti sauce, though it was a bit of a struggle. Audrie wasn't home at the time I was making lunch. I had forgotten that I was going to have to open a new jar, but went ahead and gave it a try: success! I felt like Popeye, or maybe Conan.

I've now successfully traveled with my medicine, too. We flew up to Utah this morning with two syringes of Avonex in a little styrofoam cooler, and encountered no problems. I didn't think of a good way to measure the temperature inside the cooler until just now, when I remembered that you can get dual-probe thermometers which track maximum and minimum temperatures for each probe. I ought to deploy one of those for my next trip, so that I can set my mind more at ease. I only hope it doesn't look like a bomb trigger or something to the X-Ray. This Friday, I'll do my injection at Audrie's grandmother's house. It's just adventure after adventure for this hep cat!

Big $$$ + Care = Good Products

2006-09-22T20:16:00.000-07:00

Biogen Idec sent me another little insert for my Avonex binder today. Every so often, I get an unexpected package in a padded mailer containing a letter, a 10-20 page booklet, and a medicine information pamphlet printed on Bible-thin paper. The letter usually says something nice about how Biogen Idec (the makers of Avonex) are psyched that I'm taking their product, reminds me of the various support resources they offer, and describing the booklet.

Today's booklet is titled Our Journey is MS (Letters from people who have been there). It has short letters from 8 different people, all of whom have been taking Avonex since at least 2001, describing their experiences and offering encouragement. It also talks about the mentor program that's available. The booklet is quite well done, and I appreciate getting it. I felt motivated after reading it. I also felt sad, as I always do when I read stories of people with MS. Those poor people.

There were a few things I particularly liked, and want to share. Faith described Avonex, along with its needle, as her weapon of choice. I love the idea of that needle as a weapon, like a sword. I am a bit suspicious of focusing on a "fight" metaphor, however. MS is not a thing. Fighting MS sounds a little too much like fighting a "war on drugs". There's no little alphabet running around in my brain eating at my nerve sheaths, setting up offensives or trying to get me when I'm not looking. An image that appeals to me more is of the needle as a magician's wand, and of Avonex as a healing elixir. But without Faith's analogy, I wouldn't have thought of my own.

Several people talked about how MS actually has made a positive change in their life. Like me, they have found that the disease and its treatment brings all of life into high relief, making it easy to be grateful for every day lived, every step walked, everything this wonderful body of mine can do, and everything the world offers.

John said, "Remember, you may have multiple sclerosis, but it certainly does not have you!" I take his point. But, being contrary, I have to turn it around. Here's my version. I may have MS, but it also has me—and it's gonna regret that! Foolish disease, you have chosen the wrong target. Okay, so maybe I do like personifying it and fighting it :)

Jackie gave this good advice: "After I take my shot, I immediately do something nice for someone else...it's amazing how good I feel afterward." Faith suggests rewarding "your weekly persistence with a small treat". Maybe I'll try doing both. I got myself some cookies tonight, and gave Audrie a pretty card to thank her for all her help and support.

Audrie administered my shot today, wielding the needle like a veteran. I remembered my plan to look for places on my leg with no visible blood vessels near the skin, and hardly bled at all. I did feel a little anxious just beforehand. I took a deep breath, looking away, and held up a finger for Audrie to pause. Then I took a second deep breath, meaning to signal Audrie to wait just a little longer; but she took my obscure second gesture as a request to proceed, and so, like the best nurse in the world, injected me while my attention was elsewhere.

It's funny how I get nervous. The shots hardly hurt at all—I'd say that the soreness of the twentieth push-up of the morning is more actual pain. The anxiety is clearly all a result of some story that I'm telling myself unconsciously. I think I ought to return that particular storybook to the library and check out a new one.

2006-09-17T16:27:00.000-07:00

This Friday was my first time doing my shot completely solo. Audrie was over at a friend's so that I could try this experiment, which went well overall. I did have a moment of comedy when I ended up washing my hands no fewer than three times: first to get ready, second to get ready again after I forgot to turn on the overhead light, and third to get ready yet again after I forgot to bring out the Avonex log book. I doubt many germs remained after that third time.

I also did the injection itself better than previous times. I remembered my clever idea about how to position the syringe so that it's easy for my left hand to grab. I was more aware of all my sensations during the injection than previously, because I was, for the most part, calmer. The only thing I forgot was my plan to survey my leg for veins ahead of time, and avoid them. It's good to have something to shoot for next week :)

I've been flirting with a cold all of last week and still this weekend. I've been taking echinacea to help forestall it. Echinacea is an immune booster, and Avonex is an immune modulator. Put them both in your body and what do you get? Sounds like a Steven Wright joke, although my laughter is a little forced. So yesterday (Saturday), I wore myself out a little—but on the other hand, I also was able to do more than at any time yet in my therapy. I also started out the day stronger than last week. I judge myself still to be improving week by week.

Calloo! Callay!

2006-09-09T22:27:00.000-07:00

Another week, another improvement. My shot didn't go as well as last week, because I tensed up at the last minute, but it was still no big deal. My side effects, on the other hand, were better than last week's.

This week I took some Tylenol PM on Friday night (a.k.a Avonex Eve) to help me sleep, because my sleep on previous Fridays has been shallow and easily interrupted. The drug did its job, and I slept quite a bit more soundly, and felt better this morning (Saturday). Unfortunately, we were awakened by several phone calls relatively early on, so I didn't get to sleep in.

Today I was still weak and achey, but Audrie noted that I looked more alert earlier in the morning than previously, and I recovered earlier in the evening as well. I was even able to leave the house for the first Saturday since I started on Avonex, and go sit at a friend's for several hours. While there, I performed amazing feats of strength such as opening twist-top bottles.

I like these enforced Quiet Saturdays. Today I sat for probably a half hour with the grey cat as she did a complete cleaning cycle, nose to tail. I just sat and watched her, enjoying her company as she enjoyed mine. I remember a lot of times like that from when I was a kid, and I treasure those memories. As an adult, I have emails to answer, household chores to do, more hobbies, and just generally more obligations, with the result that I do not naturally find myself with long spans of quiet time. Maybe as I continue to tolerate the Avonex better and better, the length of Quiet Saturday will shrink to just a few hours. I certainly won't mind feeling better, but I imagine I might fall back into the cycle of busy-busy-busy and lose some of the peace that comes of doing nothing.

And on a final note, I just wanted to say again how much I appreciate everyone's support. I keep getting regular emails, cards, and calls offering me so much encouragement and love that I truly believe myself the luckiest of men.

Confirmation

2006-09-07T20:06:00.000-07:00

Saw the neurologist today. I asked a couple of questions, got a note for air travel with Avonex (since the syringes and needles may cause a spot of trouble in airport security otherwise), and got a sense of the next few months.

First of all, when I asked the doctor what the oligoclonal bands in the most recent spinal tap results meant to him, he responded without hesitation, "M.S." So he feels sure that we have a solid diagnosis, which is good.

I asked how we'd be monitoring my liver function, which I gather you're supposed to do when you're on a drug like Avonex, and he responded that he was going to give me a lab order that day, then again in a few months. So sometime soon I'll go down to donate some fluids and get a workup of cholesterol panel, metabolic panel, and something else that I'm not remembering right now, but that contains the word "Chem" in it, so it must be scientific :) I usually get a physical every year, so I ought to have a pretty good baseline for comparison with a lot of these tests. As I understand it, drugs like this can be hard on your body, particularly on the liver, and so it's wise to keep your finger on the pulse, as it were.

Overall, it looks like "steady as she goes" is the plan. The only reason for a change would be if I start having trouble with Avonex, or if an M.S. exacerbation "breaks through" depsite the Avonex. In that case, he'd likely treat the symptoms themselves with steroids, and possibly switch me to another M.S. therapy like Betaseron, Copaxone, Rebif, or who knows what else by then (since I plan on that not happening any time soon!).

A little side benefit of frequent doctor's visits: on the way out, I asked for any recommendations about stethoscope brands, because we wanted to get one to listen to the baby's heartbeat when it becomes audible in a couple of months. In answer, he just gave us a spare stethoscope that he wasn't using! So I've been listening to everything: Audrie's and my hearts and lungs, the cats' hearts, lungs, and purrs; the computer fan; and, when I get a minute, I'll probably grab a combination lock and listen to it too.

Psyche!

2006-09-05T19:46:00.000-07:00

The doctor's office called today and rescheduled my appointment that was supposed to be today for Thursday. It seems my doctor called in sick. Is he allowed to do that, I hear you asking? The answer, it appears, is yes—either that, or I've been had!

So tune in Thursday to find out the scoop, or possibly to find out that I'm just stringing you along and you'll have to delay again; either way, you win. YOU WIN!!! Exciting, isn't it?

Faster, Better, Stronger Than Before

2006-09-04T13:07:00.000-07:00

This week's injection went well. I didn't even bleed at the injection site, though I suspect that is more a matter of luck than of superhuman physiology. And then, on Saturday, I was able both to open a Frappuccino by myself, and to turn on that one light in the living room, neither of which has been possible on previous Saturdays due to my post-Avonex weakness. Soon I will be able to add other activities to my strong-man routine and impress all the ladies.

In other news, I've got an appointment with the neurologist tomorrow (Tuesday the 5th) to get a note for air travel and find out what, if anything, the next step is. I'll catch up with you again after my appointment.

Battle of the Bands

2006-08-29T20:28:00.000-07:00

Today I had a phone message from the neurologist when I got home: my latest spinal tap test results are in, and they are positive for oligoclonal banding. As you may recall, this result, when combined with MRI and other findings consistent with MS, is solid support for an actual diagnosis of MS. I've got an appointment with the doctor on September 5th, after which I ought to be able to say better what exactly this test result means, but I thought I"d pass along the breaking news as it happens! So far, I view this as good news. A clear diagnosis is preferable to an extended process of worry and discovery. But I'll keep my eyes and mind open anyway.

Also today, I received my second box of Avonex, proving that Walgreen's Specialty Pharmacy, while not as good as Avonex Direct Delivery, is able, at least, to deliver my medicine. They sent it to a Walgreen's that's on my way home from work. The store called me this morning letting me know it was in, and I picked it up on my way home. Well, actually, I came all the way home, realized I'd forgotten to pick it up as I pulled into the driveway, left Audrie a quick note, and drove back to pick it up. On the way there, I passed Audrie coming home, and we exchanged knowing glances through our car windows.

That's all the news for today. For some reason, the last two posts didn't get to Blogger the way I wanted them to, so I sent them a different way just now. Hopefully this one will work okay. And that's what's happenin'!

Connections

2006-08-26T20:34:00.000-07:00

Another side benefit of being diagnosed with a serious disease seems to be that people open up to you. I've heard a lot of touching personal stories from people I've known for years; but the stories never came out until I myself needed sympathy. It's nice to grow closer to my friends and coworkers, although I wish I did not have this particular excuse to do so.

Bad Consumer! Bad!

2006-08-26T19:57:00.000-07:00

Last week's shot went just fine. I had fewer side effects than previously, and was even able to forgo a morning dose of Tylenol. Yesterday's shot, which Audrie administered with flying colors, seems to have left me with even fewer side effects: I didn't need Tylenol in the night, and have been fairly energetic today. Mind you, I still can't open my own pre-packaged beverages without Audrie's help, nor could I do well on a video game requiring fine motor coordination, but I could sit and help organize our CD collection with hardly a need for a break. Overall, I'm still feeling very positive about the trend in my reaction to Avonex.

Only problem is that, with all this improvement, I'll hardly end up buying any Tylenol at all. Not buying?! Entirely un-American!

Sharpening

2006-08-12T20:50:00.000-07:00

I want to write about another benefit of being diagnosed with MS, in a more serious vein this time. But I still haven't been attacked by zombies, so I think my last post on the subject was right on the money.

I've been telling people that this diagnosis has made me "sharper". When I say this, I mean in the sense of a blade, but I recognize that my internal symbolism doesn't translate well. A better externally referenced analogy would be in the sense of a picture: more focused, less fuzzy. I find that I am less willing to waste time being afraid or worrying about what other people might think of me. This reminder of mortality has made me more honest and straightforward. If there's something important to say or do, I do it a lot more quickly than I would have previously. If I've got something to say, I'll say it now instead of keeping quiet out of what amounts to fear.

I see this as a good thing. I believe that it helps me, because I get feedback on my actual thoughts and feelings instead of hiding behind too much politeness. I think it helps others as well, because I am more willing to share my creativity and insight without worry that someone will say my ideas are dumb. Maybe they are dumb—all the more reason to share them, so I can keep from making similar mistakes in the future.

I can feel this attitude improving my relationships and my effectiveness at work every day. Maybe I will lead a full life, just as if I were perfectly healthy. In fact, that's my plan. But if not, I know I'm going to be satisfied with the life I lead, and that's unspeakably precious.

Second Shot

2006-08-12T20:41:00.000-07:00

Yesterday, my lovely wife gave me my second shot of Avonex. I was more nervous this time, so I was tenser, but she did a great job. Now we'll keep on switching off so that we both stay in practice. My side effects were a little milder this time. For example, I didn't have as many chills in the night. Some of this may be acclimation, but some of it is also me being smarter—for instance, this time I wore pajamas to make the chills more bearable. I've also hydrated even more religiously this time, and my headache today is better than last week. Now that it's evening, I'm starting to wind down, but overall I'm even more hopeful after this weekend's experience.

The Avonex folks also called to follow up with me and see how last week's training went. You can really provide good customer service if you have ridiculous amounts of money, it seems.

Twenty-four Hour News

2006-08-06T22:12:00.000-07:00

Just a quick update on the metabolic half-life of Avonex in Stephan's body.

Yesterday (Saturday), I had a lingering headache until late afternoon. I could also feel the echoes of my joint and muscle pain, which manifested as a slight weakness. Luckily, Mighty Audrie was around to help me open my frappuccino. I didn't even bother taking any medicine for the headache, though, to give you a sense of its non-hurt-a-lot-ness.

I fell asleep just fine and woke up this morning (Sunday) feeling totally normal. Looks like my Saturdays may be days of rest, but I certainly won't be laid up in bed all day. I feel very hopeful—this whole thing seems entirely manageable.

I've got a number of other terrifically interesting things to say in this particular blog, but I am currently much too lazy to actually write them down. Someday soon, though, your RSS reader is going to be hopping. Till then, be excellent to each other.

Side Effects

2006-08-05T10:41:00.000-07:00

It's now 17 hours since my first injection of Avonex. I have some good news and some bad news.

The good news is that, although I felt flu-like symptoms, they are entirely manageable. About 4 hours after the injection, I started feeling muscle and joint aches, chills, and a headache. This happens to be 6 hours after I took my Tylenol, so the symptoms may have been masked until then. I woke up every hour or two in the night, thirsty, and drank a glass or two of water.

I took Tylenol again twice more, at six-hour intervals, when the symptoms were strong enough to keep me awake; each time, I fell asleep again shortly. This morning, I have a little headache, but the other symptoms have subsided. I expect to feel normal again by the afternoon.

One fun thing is that, although I had flu-like symptoms, I didn't feel sick. My health and energy were strong. I imagine I'll be able to learn how to differentiate illness from some of its secondary symptoms.

Oh yes, I promised you bad news. Frustratingly, I have yet to show even the slightest sign of developing interesting new superpowers. I was certain that with all the radiation and procedures and injections I've had lately, superpowers would be inevitable. Maybe I'm just a late bloomer—I'll keep you posted.

Avonex

2006-08-04T19:31:00.000-07:00

So today I took my first Avonex shot. It's still a bit early to tell how I'm going to react to it, but so far I'm feeling good. The most common side effect is flu-like symptoms. I've just been pretending that I already have the flu all day, drinking lots of water and taking some Vitamin C. Then I took two Tylenol a couple of hours before the injection as an additional preventative.

The way it worked today was that I went down to a local health care facility and got training on how to do the injections, then gave myself my first shot. My wife and my mom both came with me to get training as well, so that they can be back-ups for me as needed. There was also another woman there who was diagnosed with MS two or three weeks ago, accompanied by her husband and their children. The kids stayed out in the lobby and played handheld video games or wrestled while the rest of us got schooled.

Of course I was very meticulous about following instructions and doing everything just so, because that's how I am. I was surprised to find how little the shot itself hurt. It was uncomfortable, especially once the rather long needle was all the way in, and then there was a little pressure when I sent the medicine down the tube, but no big deal. Now I'm just waiting to see how the side effects hit me, because apparently the first time is about the worst it's ever going to be, at least for flu-like symptoms.

I've been very impressed with Biogen Idec, the makers of Avonex. They've got a great support system. I've spent probably two and a half hours on the phone, total, with various representatives who called me to give me tips and make sure I felt comfortable with the whole scenario. They helped me with insurance and got me in touch with the people who did today's training. There's a lot of money in the biopharm business, and it's in everyone's best interest for people like me to keep buying these expensive, effective drugs, so plenty of money gets spent on the support system.

I can imagine some people resenting the weekly injection of a foreign substance into their bodies, especially when it comes with short-term side effects but it's long-term effects are an absence of symptoms. But I choose to look at those little vials sitting in my fridge and see them as tubes filled with life and hope. Here's to hope!

Third Time's the Harm

2006-07-26T14:11:00.000-07:00

My second spinal tap is done, and I'm recovering now. I should be back to normal by next week, possibly even this weekend. Although the procedure itself went fine, the side effects were more severe this time, and I spent several long days navigating the Medical Maze (as D— calls it).

The procedure itself went fine, with one wrinkle. I went into the radiology department of St. Joseph's hospital to have it done. Because my neurologist had run into the gate of bone when he attempted a tap the week before, I was having it done under a fluoroscope, a kind of moving-picture X-ray. This way, the radiologist could see exactly where he was going. Most of the people I interacted with at St. Joe's had a very good spirit of care and helped me feel well supported. The radiologist was no exception: he had a very gentle bedside manner, always explained what he was doing, and was warm. He remarked on the volume of fluid he was getting, and said that it must have been one of his "better sticks".

The wrinkle is that, immediately after the spinal tap itself, I had to go back to Outpatient and get some blood drawn. (The test I was having done, checking for oligoclonal bands to support a diagnosis of MS, uses both cerebrospinal fluid and blood.) I ended up waiting about an hour in Outpatient, without much choice but to sit upright for that entire time, which was against my doctor's recommendation. He wanted me flat on my back as soon as possible after the tap. The phlebotomist who took my blood was also confused at first by the order, as she did not recognize the test. I told her what I knew, and she rushed to put a hold on the cerebrospinal fluid so that it and my blood could be processed together. Then I went home.

Now, here's what should have happened next. I should have gone home and rested for three days. The procedure was on a Friday afternoon, so three days would put me at Monday. On Monday, if I was feeling well I'd go to work. If, instead, I still had a positional headache on Monday (one that was worse when sitting up than when lying down), it would indicate that the hole in my dura (the tough sac surrounding the spinal cord) had not closed properly, and I was leaking cerebrospinal fluid. I would call the neurologist's office and arrange an epidural blood patch. This would fix me up, right as rain, and I'd be back to work on Wednesday.

What happened instead is that on Saturday, Audrie and I grew concerned that I might have an infection. We went to the emergency room, which left me in worse shape than before; another ER visit and a day of rest later, I finally got the blood patch on Tuesday and am recovering. That's the summary; but you don't read this blog because I summarize. You read it because I dish the dirt. So read on for the juicy details of intrigue and suspense in monsoon-soaked Tucson!

Let's go back to Friday night. I had just had the spinal tap, and was at home in a well-prepared bed. I had books, video games, and my computer to keep me occupied. I decided to watch the movie The Ninth Gate, a delightful romp through the world of devil worshippers, which I had received as a birthday present but hadn't yet gotten a chance to watch. Taking seriously the instruction to stay on my back, I craned my neck at an awkward angle for a couple of hours, probably straining it. By Saturday, although I had been resting and caffeinating assiduously, I noticed a distinct postural headache. My neck and back were also very stiff and sore, I thought probably from watching the movie on Friday. But then Audrie looked at the injection site on my back and noticed it was swollen.

After my first spinal tap, I had had only a little hole like I had been poked, no swelling. Hep young jazz-cats that we are, Audrie and I turned to the Interweb for clues to help us interpret what we were seeing. WebMD obliged with lots of useful information, including this advice:

After the test

Contact your doctor immediately if you have:
        • Chills or a fever.
        • A stiff neck. This may be a sign of a developing infection.
        • Any drainage or bleeding from the puncture site.
        • A severe headache.
        • Any numbness or loss of strength below the puncture site.

Well, I did have a stiff neck. I had that swelling at the injection site, roughly dime-sized and ringed with red, possibly indicating subdermal drainage. Maybe I had a slight fever, too—and I had been taking Tylenol, which might mask a higher fever anyway. Good thing we checked! I was clearly experiencing full-blown infection! Actually, we just didn't know what to do now. All we knew was that things were different this time than the first time, and we were worried. Audrie called the on-call neurologist at my doctor's office and described what she was seeing. He advised going to the emergency room to have a doctor look at it and render an opinion on infection, so we did.

Emergency room doctors have to deal with a lot of different kinds of problems, and it's unlikely you'll get a specialist in your particular problem area. But there are some things that they know almost always improve a patient's situation: get him properly hydrated, clean any wounds, manage pain. After I sat up in Admitting with a headache growing steadily worse, that first ER doctor told us I was not infected, and I am glad of his expertise for that. We asked about getting a blood patch, and were scared out of it. The anesthesiologist told us, by proxy through the ER doctor, that there's a risk of chronic pain from the waist down, and they'd rather let it heal on its own. But if I really wanted, he'd do it anyway. The ER doc prescribed Percocet (a pain medication) and a couple of other things to manage the side effects of Percocet, and sent me home. The nurse handed me a Percocet and a glass of water with my discharge papers, and I was on my way.

By the time Audrie had started the car, I was already feeling nauseous from the pain medicine. Pain actually had not been my main complaint, as long as I was able to lie down, and I was perfectly happy with Tylenol up to that point. But out of habit, I took the pill the doctor gave me, and that led me to a great deal of trouble. When we got home, I made poor Audrie run halfway across town to get me the anti-nasea medicine that is apparently de rigeur with Percocet. That helped some, and I was able to eat a tiny supper. The midnight Percocet didn't help my headache, but I slept through most of the nausea. The early-morning pill had me vomiting in less than 5 minutes. From this point on, I couldn't keep anything down, not even water. So by that afternoon, I was back in a different ER with an IV stuck in me.

This time, we brought a pad, blanket, and pillow, and I lay on the floor while Audrie did the first part of checking me in. I still had to sit up to get my vitals taken, though, and was soon vomiting again, from the headache pain as much as from the Percocet this time. Two bags of fluid, one bag of caffeine, and some IV morphine later, I went home feeling...well, feeling at least alive. We had asked about a blood patch again, only to be scared out of it again. This anesthesiologist told us, again by proxy through the ER doc, that there was a danger the epidural needle would actually puncture the dura, and then I'd have an even bigger leak to contend with. The ER doctor prescribed morphine to manage the pain (which still was not a big deal when I was lying down). Out of habit, I took it, and it did help me sleep. I slept most of Monday, not getting much better and not getting much worse. If things had gone according to plan, by this day I would have known clearly that I had a spinal headache and been arranging for a blood patch. But, thanks to the two days of misery in emergency rooms, I was behind schedule. Not only that, but the anesthesiologists our ER doctors had talked to were clearly reluctant to perform a blood patch, and I didn't want someone fearful poking a needle in my back.

Tuesday morning (yesterday as I write this), we did call the neurologist's office and get an appointment for a blood patch with someone who does them regularly and thinks they're not a big deal. Audrie, by now an expert at Admitting, made sure I was set up with a bed straightaway upon arrival, so I didn't have to sit up or lie on the floor. The anesthesiologist took 20 cc (four teaspoons) of blood from my arm, injected it in the epidural space around my spinal cord, and I immediately felt better, if fragile. If I understand correctly, what this blood does is form a compression sleeve around the dura, increasing the pressure of cerebrospinal fluid in the brain so your headache goes away. It also may seal the hole from the original lumbar puncture. Kind of like an Ace bandage, I guess, or like squeezing a balloon animal that has started to get a little flat. When we came home, I didn't know what to do with myself for quite a while. I had grown so accustomed to lying in bed that being able to walk around, if stiffly (my lower back is sore from the blood patch), was a new adventure. I also cried and cried from the relief of what had grown to be long-standing illness.

As I tried to describe to Audrie how I felt, I just kept getting analogies. I felt like a thousand-year-old vase. I felt like a Japanese paper lantern that had been crumpled into a ball and was slowly inflating again. (You have to picture this one as drawn in the style of Hayao Miyazaki's Spirited Away, with the outline of the lantern's real shape forming a ghostly image around the crumpled lantern.) I could hardly remember that weeks were divided into days, for my personal calendar had been reduced to 6-hour periods of sleeping/waking between taking pills. But after eating an all-organic meal from Eclectic Pizza, I started feeling stronger.

Last night I slept a broken sleep, but today I feel better yet and look forward to a full recovery soon. The medicines I took will take a few days to drain completely out of my system. My back will still be sore for a couple more days. I'll have to taper off the high doses of caffeine I was taking. All minor stuff—I feel good, and I feel optimistic.

The neurologist was great, again. He had been on vacation, but came straight from the airport to his office upon getting the page about me. Then it was only about two hours from the time he called me until the time I was getting my blood patch. He called again first thing this morning to check up on me. Now we just wait for the results of this test, and get ready for Avonex. But I'll write about that separately.

The Gate of Bone

2006-07-14T09:08:00.000-07:00

Went in for my second spinal tap today, but it was a dud. The doctor ran into bone twice when trying to get to my spinal fluid, and decided to postpone the procedure until he could do it under "fluoro". Sounds like something that would deplete the ozone layer, but actually it's a fluoroscope, a device that lets the doctor see what he's doing under X-ray so that he can go right in, easily missing the bone. You can read about fluoroscopy at the Wikipedia if you want, and then you'll know at least as much as I do :)

So the good news is that I won't be knocked out for the next couple of days. I'll just have a sore back where I got poked, something easily treated with warm, moist towels, Advil, and ice cream bars. The bad news is that I will miss some work next week, we'll have to juggle our schedules around, and I'll be knocked out for a couple of days then instead of now. I'm still feeling too keyed up from anticipating the procedure this time to go to work, so I plan to chill with the cats for a few hours and then see how I'm doing. I cleverly stayed up late last night so that it would be easier for me to sleep today—maybe I'll take a nap.

The doctor's office is going to call later and schedule the "third time's a charm" spinal tap for next week. I'll write again when I have more information. Stay cool, have a fun summer!

Partial Results and a Step Forward

2006-07-11T19:18:00.000-07:00

Went to see the doctor today, because we kept missing each other over the phone and I wanted to ask about the results of my tests so far. I'll give details at the end of this post.

So far, we still don't have absolutely firm evidence that I have MS, but there's nothing else that appears to be a candidate. I'm going to have a second spinal tap on Friday; the lab didn't run one of the important tests the doctor ordered from the first spinal tap.

I'm also going to start taking Avonex, a preventative drug which helps a lot of people avoid exacerbations of the disease, but it will be a few weeks before that's all set up. First, I have to get signed up with the company that distributes it, get training in how to inject myself (which I'll do once a week), and possibly do some other paperwork. Avonex is a drug that "modulates" the immune system, meaning that it tries to keep it from becoming too depressed or too active. There are not any bad side effects from healthy people taking the drug, so I won't be doing any harm even if I don't have MS after all.

I was once again very happy with my doctor, Dr. Michael Glynn. He is aggressive about treating the disease, and unwilling to take chances with my health. For example, since the lab didn't run the test he wanted on my cerebrospinal fluid the last time, he wants to do this second spinal tap to avoid any question of what might have shown up. He also said that if I have symptoms that break through the Avonex a few times, or if the side effects (generally, a day of flu-like malaise on the day of injection) are too severe, then we'll move me to a different drug; and he'll treat the immediate exacerbation with steroids to help prevent long-term damage. He's totally in favor of me getting a second opinion if I want one. Most importantly, he seems genuinely committed to helping me manage my MS, and he cares about my health and well-being. He also believes that I will do well, both with treatment and with the disease, which I find encouraging.

I'll write again on Monday about how I do with the spinal tap. After that, it will be a week or two before I get the results. I'll write again when something interesting has happened on the Avonex front, as well. Till then, it'll be life as usual: work, spend time with friends and family, play, learn.

For those of you who are interested in more technical details, here they are. My levels of IgG (Immunoglobulin G, or gamma globulin) were normal in both my cerebrospinal fluid and in a subsequent blood test. This is unusual for someone with multiple sclerosis, because IgG levels are generally somewhat elevated in people with auto-immune diseases like MS.

My somato-sensory evoked potential (EP) test was normal, while my visual EP showed a borderline slowdown. Usually, someone my age would be totally normal in both.

The test the lab didn't run was for oligoclonal banding. If this test is positive, then it's a pretty good indication (in my case) that I do have MS. If it's negative, that doesn't give us any diagnostic information. But since the lab didn't run this test, we currently have even less than no information :)

The MRI of my cervical spine was normal. Only the MRI of my brain proper showed plaques (scars).

All of this put together still does not give us a solid diagnosis of MS, but the doctor said there's nothing else that it's likely to be at this point. We'll proceed under the assumption that I do have MS, stay on top of my treatment, and overall just try to keep me as healthy as we can.

Indications

2006-06-05T07:10:00.000-07:00

For "the record" (though shouldn't it be called "the CD" these days?), and for those of you who are coming to Stephan's epic saga in media res, here is a synopsis of how I got on this road to a diagnosis of MS.

On the evening of August 12th, 2005, while having dinner in Denver with an old friend, I noticed that I felt vertiginous if I tilted my head back. I didn't know what to make of this, and it wasn't a strong feeling, so I just filed it away under "pay attention" and went on with the evening. Over the next couple of days, however, the vertigo got stronger and became nearly constant. I also found that I had double vision whenever I looked far to the left, and, eventually, whenever I looked anywhere left of center. After a few days of constant vertigo, I also felt quite nauseous. Trying to focus on a computer screen or anything else close to my face increased the vertigo.

I was in Denver for a week-long work trip. I spent much of the time holed up in my hotel room, not in the vacation-having-fun kind of way, but in the if-I-sleep-at-least-I-don't-notice-how-awful-I-feel kind of way. I went into work on the days when I was really required, and stayed in bed the rest. Eventually, I had the brain wave to get some Dramamine, which broke the nausea and allowed me to work more effectively, but by this time, my double vision was in full swing. When I got back to Tucson, I saw a neuro-opthalmologist, my internist, my osteopath, my acupuncturist, and even my dentist for good measure, although that was a pre-existing appointment. The consensus I got was that the most likely explanation after a single episode was a virus, or an overreaction by my immune system to a virus. The ophthalmologist advised against getting an MRI at that time because MS was still only residually indicated, and even if the diagnostic image came back clean, just the mention of MS anywhere in my record would make me virtually uninsurable.

My double vision gradually cleared up over the following months, until, by December, my vision was basically normal again. But then in mid-April of 2006, I noticed slight vertigo one evening over at a friend's house, and trouble focusing in my right gaze the next day. So I went into the ophthalmologist again. He noted that now I had two events, separated in time and in space (my two visual symptoms came from different parts of the brain), so it was time to get an MRI. And that's where this blog picks up in the 5/5/06 entry.

Spinal Tap: Mission Accomplished

2006-06-05T06:55:00.000-07:00

I had my spinal tap on Friday (2 days ago). It went smoothly, and I seem to be recovering well. I'll get my results in a week or so, and will pass them on then.

The experience itself was interesting. I had been hearing a number of different meta-messages about spinal taps. The good Dr. Imberly told me, and I believe her, that it is a routine procedure. Dr. Kate gave the same vibe. Various laymen, however, talked about it with a certain weightiness. I think I now have a better read on what this is about. When my doctor was prepping me for the procedure (which took only about 30 minutes total, from walking into the office to walking out), he said that I should expect to feel a certain pressure on my back. But if I were to feel a pain in my legs, he said, I should tell him at once and remain absolutely still. I imagine this is because it would indicate the needle was rather closer to the actual spinal cord than intended. So I think the mixed emotional messages I've been getting stem in part from the severity of possible side effects. If done carefully by a skilled doctor, the procedure should be routine. But if it goes wrong, the consequences may be rather worse than a bruise, or so I gather.

In any case, mine went fine. It did tire me out. Whenever I have blood drawn, even just a small vial like for cholesterol tests, I feel pretty weak afterwards. In this case, it was my cerebrospinal fluid that was extracted. I didn't feel weak afterwards, but I felt...knocked down. The comparison that came to mind was of floating in the ocean, and being bowled over by a wave. The wave is neither swift nor slow—in fact, it is almost gentle—but you are completely helpless before it. That's how I felt: gently, inexorably, knocked onto my back.

I've been resting, drinking caffeinated beverages, listening to music, playing video games, and taking painkillers. I think I'll probably go to work tomorrow and be just fine; at worst, I may leave early. For now, it's off to make a little more progress in Dragon Quest VIII.

On Cures

2006-05-21T15:25:00.000-07:00

A good thing about having projects that are too big for computers to do quickly is that sometimes you get a few minutes here and there to do other things while you wait on the computer. I found this in such a time today. It's a brief article in the London Free Press about actor Teri Garr, who revealed in 2002 that she has MS. I particularly enjoyed this quotation, though I don't share the sentiment:

Garr says she has a set answer for anyone who tells her how much they ache because she has the disease: "My heart bleeds for you too because you're an idiot. There'll be a cure for MS one day. There's no cure for being an idiot."

This is Spinal Tap

2006-05-16T20:19:00.000-07:00

Talked to the doctor today, and he said that the results so far were, as with everything else in my case, a "soft call". I tentatively have a spinal tap scheduled for June 2nd (but have to firm it up with the office staff). Why so long? Basically because both the doctor and I will be traveling in the meanwhile. The hope is that the spinal tap will give us enough additional evidence to turn this soft call into a sure thing. So I don't expect any more news for a couple of weeks. When I get it, I will be sure to share.

Childhood Preparation

2006-05-15T20:00:00.000-07:00

Another thing that's helping me cope with the idea of having MS is that I've always liked macabre stuff. I had an Edward Gorey coloring book when I was a kid (thanks Mom!); I dug the Mod style in high school and college (and would still if it weren't now called Goth instead). I enjoy the stories of H.P. Lovecraft and the cartoons of Gahan Wilson. I love movies like The Nightmare Before Christmas. If I can fall for a patchwork gal like Sally, I basically have no choice but to accept eerie occurrences when they befall me.

There are limits, mind you. Just because I like The Addams Family doesn't mean that I'm going to spend all my time with creepy crazy people who want to murder me. But it does give me a different lens through which to view my situation. It's a fictionalized, simplified lens, and it represents a model which does not incorporate actual human pain and sadness, but it's valuable nonetheless.

Using the Auto-immune System to Beat an Auto-Immune Disease

2006-05-15T19:45:00.000-07:00

Audrie sent this article to me today. It describes using the body's own immune system to target and destroy the "renegade" white blood cells that have improperly targeted myelin as a Bad Guy. The process is still in early trials, so Yours Truly won't get to try it for a while (assuming it passes all its tests), but I love the idea of it. The body wants to be healthy. Just give it a little help, and it can be. It would still be nice to know what causes MS in the first place, though.

Unwelcome Vigilance

2006-05-14T20:38:00.000-07:00

It's sad to notice that, from now on, every time I bump into something, or my hand shakes, or I drop something, or I trip, we will wonder whether it's a flare-up of MS. I am clumsy enough to create plenty of opportunities to worry. There should be a standardized scale of the maladroit, so that I could take a baseline reading now; then, in the future, I'll be able to ignore any klutziness that falls within my normal range.

Second MRI

2006-05-09T19:05:00.000-07:00

Today I had a second MRI. The first one was of my head. This second one was of my neck (cervical spine). The neurologist wants to see whether I have any plaques or lesions in that area, in addition to the ones they've already seen in my brain.

The test was done at a new building, just a couple of blocks from my work. I walked there in under 10 minutes, and I think it would have taken nearly as long to drive, what with having to walk to my car, pull out across traffic, make U-turns, park, and get from my parking place to the entrance of the building. Save the world a few hundred steps at a time, that's my motto for today. The people at the imaging center were all super nice, and had an excellent business-wide attitude. Every step of the way, I had one-on-one time with whoever was attending me, from the checkin receptionist to the nurse who set me up with a personal locker in a private changing room to the lead technician who came out to apologize for running late. All the technicians had a caring attitude and made real efforts to relate to the patients. I admire the corporate ethos that encourages this kind of pervasive caring.

They were also quite careful and thorough about the test itself. When my first machine, a Toshiba, had what looked like an imaging artifact in the picture, they re-did that portion of the test on another machine (a Siemens). That took extra time and effort on their part, but also confirmed that what they were seeing was, indeed, only an artifact, and not a Hot Wheels model car that had somehow lodged in my spine, or whatever it looked like.

The doctor won't see the results of this MRI until Thursday (on which day I'm flying to Utah anyway). I am betting that I won't know more until next week. I guess there's a possibility we won't schedule a spinal tap if the results so far are conclusive, but right now I'm still assuming that we will, so it'll be another couple of weeks total before the doctor has all the results in hand. Stay tuned for more exciting developments!

Tuesday Thoughts

2006-05-08T19:53:00.000-07:00

I'm going to have to come up with better titles for rambles. "Tuesday's Thoughts" will soon be rather ambiguous otherwise. Plus, I had some of these thoughts yesterday. And double plus, I just realized it's not Tuesday.

One bummer about having an expensive disease is that it ties me to a medical insurance, and therefore to a job, in a new way. I've been planning to retire at age 50 for many years now. Recently, my lovely wife began thinking that it wouldn't be a bad idea for her to retire at age 50, too. But now, in addition to imagining carefree lives of mixing piña coladas and pursuing hobbies, we have to imagine paying for an expensive drug habit too. Guess we'd better make those drinks virgin.

Having been basically healthy for most of my life, depending on regular doses of a pharmaceutical to keep me going seems like a big change. But it's not actually much different than the other constraints of living in a body; it just places me in a more specialized ecological niche. Some species can live in many climates, some in just one. I guess I'm changing from a black bear to a cave fish. I hear the caves host some pretty good parties, though. There's plenty of other perspective to be had, too. A few hundred years ago, something like half of the people who were my age had already died. I share this world with plenty of beings whose opportunities are more limited than mine. Or you can go the other way, and imagine a nation of super-heroes. To them, our most fulfilled lives might seem wretchedly limited: we can't even fly, for heaven's sake!

Little-known Benefits of MS

2006-05-05T22:50:00.000-07:00

You know, people are all down on MS, but I think that incurable brain diseases get a bad rap. I'm compiling a list of the benefits of MS to help improve its image.

First of all, if you're going to get some kind of incurable disease, a brain disease has got to be tops for coolness. When the incurable diseases go to parties, do you think that Incurable Foot Disease is constantly surrounded by the ladies? Or Incurable Nose Disease has a stylish wardrobe? The answer, my friends, is no; but when Incurable Brain Disease walks in the room, heads turn. The guy's got serious mojo.

I've also now got an ironclad excuse for acting eccentric. In the past, I've had to deal with some strange looks and tsk-ing noises, because it was assumed that I was just some hippie weirdo. As soon as I've got my diagnosis, though, I'll be in the pink. Maybe I'll get a little ID badge like the feds are always flashing on cop shows. Someone shakes their head at my antics, and BAM! Out comes the badge. Who'll be shaking his head then? Me, that's who. Sadly, and pityingly, with a pinch of stern authority thrown in for good measure.

It's late, so I'll leave the many remaining boni for another time, but I've got to mention the main perk: zombies do not dig the folks with MS. Our brains have this weird coconut flavor that just does not complement the taste of regular brains. Next time there's a zombie outbreak, you mark my words: I'll be sitting pretty, hanging out in the living room and sipping mint juleps while everyone else runs around screaming in fear.

On another subject, I've noticed a curious inconsistency in my friends' attitudes. Sure, they all talk sweet about how they wish they could help when I break the news. But the minute I suggest the obvious helpful action of becoming brain donors, they change their tune. The most common excuse is, "oh, you don't want my brain." Um, actually, I do. That's why I suggested it, people. You're going to have to do better than that if you want to stay on my good list.

A Yardstick

2006-05-05T22:30:00.000-07:00

So, just to put things in perspective, yesterday I cleverly cut my finger while trying to take apart the furnace to clean our air filter. Don't worry, my tetanus shot is current. Moment to moment, I have to say that this little cut on my finger is causing me quite a bit more inconvenience than MS! Today I can type again (obviously), but I still have to remember to walk on Audrie's right side if I want to hold hands with her.

Evoking My Potential

2006-05-05T22:21:00.000-07:00

Yesterday I had my evoked potential tests. I won't get the results until I next see the neurologist, which will be after my second MRI and my spinal tap (probably 3-4 weeks total).

The test itself was kind of interesting. Both tests work basically the same way. I got electrodes hooked up to my head, on top of conducting gel that is like the stiffest hair styling product you've ever seen. For the rest of the day, I had all these little areas of crazy hair sticking up every which way. A little stiffer, and I could have turned my head into a weapon. So anyway, electrodes on the head, and then a stimulus applied to my normal perceptual apparatus: my eyes and the skin of my ankles. The computer recorded both the stimulus and my response to it, so I was basically a portion of a machine for 40 minutes or so. Whoever first thought of measuring themselves this way must have been psyched. It's a big creative leap to go from measuring the response of a tube or a transistor or something, to measuring the response of an entire person's sensory system.

For the visual part, I just had to look at a checkerboard pattern of 1024 black-and-white squares on an old tube-style monitor. They flipped back and forth periodically while I stared at the center of the screen to get maximum coverage of my visual field. For the somato-sensory part, a word which my spell-checker really does not like, I got mild electrical shocks applied through pad electrodes on first my left ankle, then my right. They were quite mild, although they made my toes dance like a drunken goth at a midnight rave. It felt a lot like having my ankle right up next to the jet in a hot tub.

Audrie found out some good news. She looked into our insurance, and it turns out that our plan covers Avonex (the medication that the doctor is suggesting), with us only having to pay $30 a month. Avonex wholesales for something like $20,000 a year; that's a nice discount! We also have a pretty solid disability plan (which I hope never to have to use). So in addition to the great social support network which surrounds me in the form of all my friends and family, we've got a good insurance fallback as well.

Initial Status

2006-05-05T22:03:00.000-07:00

Here's a copy of the email I sent to my friends and family Wednesday of this week, the day after I first heard that I might have MS.

I went to the neuro-ophthalmologist yesterday to get the results of my MRI from last week. He said that the MRI showed lesions in my brain. I've also had two demyelinating incidents that happened at two different times and at two different places in the brain. The whole package, lesions + spatially diverse events + temporally diverse events, adds up to multiple sclerosis.

The MRI showed other areas where nerves had become de-myelinated, not just the ones associated with my recent double vision. This suggests that I have had nerves get de-myelinated in the past, just without any symptoms that I noticed. The fancy name that the doctor used for the lesions was "regions of T2 hyperintensity".

Today I went to see a neurologist to take the next step on finding out whether I have MS, and what to do about it if so. MS is hard to diagnose because you have to rule out all the alternatives first. I'll be having three more tests that will help firm up a diagnosis. I also received information about treatment and prognosis, if I am diagnosed with MS.

Tomorrow, I'll have an evoked potential test on my vision and my somato-sensory systems. This is a test that measures how well electrical signals travel through your nerves. While an MRI takes pictures of your body, this test measures how well your body works.

Next Tuesday, May 9th, I will have a second MRI. My first MRI was just of my head. This second one will be of my neck area. The purpose is to discover whether I have any more plaques (scars) on nerves in my neck area. If I do have more plaques there, it lends weight to a diagnosis of MS.

In a couple of weeks, I will have a spinal tap. In a spinal tap, a small amount of the fluid that bathes your brain and your spinal cord is extracted and examined. The doctor will be looking for indications that nerves are being demyelinated.

Once I've had all these tests, the doctor will be able to make a better determination as to whether I have MS. So far, MS is still the likeliest explanation, and we're moving ahead on the assumption that I have it.

There are a handful of drugs available to treat MS these days, although there is still no cure. The doctor gave me an information packet about Avonex ( http://www.avonex.com/ ), which is a once-a-week injection of interferon beta-1a. The purpose of all the MS treatments is to slow the formation of lesions in the brain and central nervous system. If you start treatment early, then the prognosis is generally very good. This is because permanent damage and disability generally only happens in MS after multiple repeated demyelinating events. Eventually, the conducting fiber of the nerve itself, the axon, can be damaged. So if we reduce the incidence of demyelination, it is much less likely that any permanent damage will occur. The side effects of Avonex are flu-like symptoms the day of the injection. For most people, the severity of these flu-like symptoms decreases over the course of treatment, as your body gets used to it. However, if Avonex does not work for me, there are other options as well. Their basic approach is all the same: to decrease the incidence of demyelinating events.

In summary, I will be having a few more tests to help determine whether I really do have MS. I'll have the results of all the tests in about a month. Right now, it appears quite likely that I do have MS; I just do not yet have a formal diagnosis. There are good treatment options for me if I have MS. I expect a basically normal life, and a basically normal span. I'll keep you posted as I learn more.

So how am I feeling about all this? Curious, accepting, uncertain, scared, relieved, skeptical. MS is a strange disease, and its symptoms are all over the map. I don't know what the future holds, but I intend to meet it with eyes, arms, and heart open.

It Begins

2006-05-05T21:53:00.000-07:00

I'm starting this blog as a place where I can write about, as E— put it, "my path through life with MS as my constant partner". I don't yet know what I'll put here, but to start with, I'll post updates on my status, the progress of my diagnosis, and whatever related thoughts come to mind. So that will probably include a fair dose of silliness.

I want to keep this separate from my regular blog because it has a different purpose and a different audience, but I may find myself doing some cross-pollination as time unfolds.

Because I am lazy, I also plan to post updates here rather than trying to email them directly to all my wonderful friends and family.

Anyway, welcome and thanks for stopping in. Let's get started, shall we?