Sunday, September 14, 2008

A Nearly Balance


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.

Saturday, April 19, 2008

Weeks?


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.

Saturday, March 08, 2008

Melange


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.

Saturday, February 16, 2008

The Names of Things

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!

Friday, February 15, 2008

Re: Covering

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.

Saturday, February 02, 2008

'Ware the Foxloxians


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.

Saturday, January 26, 2008

Two in a row


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!

A Word of Advice

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. 

Saturday, January 19, 2008

Welcome to 2008


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.