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!
Friday, August 31, 2007
Saturday, August 18, 2007
I like to think that my side effects from Avonex are continuing to get less severe. Maybe next year I'll look back and laugh at how I had to deal with them every Saturday.
Last Thursday, my acupuncturist said that my liver might be "tired" from Avonex, and did a treatment to help it feel more awake and energized. That was an interesting idea. When we give the baby Tylenol for teething pain, I always think about his liver. But if the way medicines affect the organs is really more like getting tired than like damage, I feel more optimistic. Maybe in 18 years when he's left home, I'll have time to look into that idea :)
CC, thanks for the note about bruising and icing. I do bruise easily, so it's quite relevant.
Next week I travel with Avonex for the second time; but I'll be flying with the baby for the first time. It's a one-leg flight up to Salt Lake City, so it's short and most of our fellow travelers will probably be at least tolerant of babies. We used to be very vigilant about travel (as well as other things), but I imagine that, of necessity, we will relax our focus on the details of tickets, gates, etc. We'll still get there just fine, but it will be more of an "enjoy the ride" kind of experience than one where we control all the details. I'm curious how my injection and side effects will work out with all the newness.
Just read an article saying that stress-related inflammation can aggravate neurodegenerative diseases. No surprise to anyone who's got one, I'm sure. My osteopath describes how her sister, who has MS, can rate her stress level almost numerically by the severity of her symptoms. (The article discusses using chemicals to block the stress response; I prefer to lower stress directly as much as possible.) I ought to print that article out and carry it around in my wallet to show my boss as needed.
Another scattered weekend. I'll publish this now before it extends into 10 sessions at the computer! No post next week because of travel, but I hope to see you again the week after that.
Posted by Stephan Terre at 12:34 PM
Sunday, August 12, 2007
A couple of people have asked me what it means for my doctor to say I'm in remission with MS. For one thing, it doesn't mean that I stop taking my Avonex therapy. It also does not necessarily mean that the disease is not progressing. My first MRI showed old scars as well as active lesions, indicating that MS had been doing its thing for quite some time without any symptoms that I noticed. But it does mean that I have no symptoms or disability at present, and I'll take that gift.
Welcome to all the new readers and thanks for your comments. Harkoo, you mentioned that you ice your injection site and it's totally painless. Thanks for the tip. I'm still trying to decide what I want my relationship with the sensation of injection to be. I am fortunate that the sight of the needle does not disturb me (much). I like to envision it as a weapon, like a sword or spear, that I wield against MS. So right now, I'm trying to extend my sense of touch into the needle. On the other hand, I am obviously trying to distract myself with music and control my reactions with hypnosis, so I think I have a split intention here :) Maybe I'll try the icing technique sometime and see how it works for me.
Merelyme, thanks for collecting a list of bloggers. You're helping to create a mini-community here, which will help us all. Bubbie, thanks for the good wishes. mdmhvonpa, I'm afraid that Walgreens only sells flux capacitors through their online site, and their shopping cart system has a bug that doesn't let you add them. I tried calling customer service, but got stuck in a time-space vortex as a result of navigating their phone tree. And to all who commented, thanks for your encouragement. Each of you is struggling with burdens that I, through undeserved grace, have so far avoided.
This week's side effects were pretty good. I am hopeful that they're still trending towards improvement. Audrie noted that I did my injection very slowly this time. I didn't really notice; I do remember pausing to get past an initial pain, but I didn't have any sense of time for the remainder. My goal now is "one smooth motion". I often find myelf pausing just above the skin. I want to erase that tentativeness. And—why not? Inject with flourish and flair. I might even shoot for pizzaz.
I had called Biogen-Idec with a couple of questions (which the rep referred to my doctor) and to ask for a new therapy journal. Having gone through one year of therapy, I used my old one up! Two weeks later, a two-inch stack of new journals showed up in the mail. Guess I'm set for a few years. I also decided to keep a spreadsheet on Google Docs with date, comfort, site, and notes. I guess my main goal is to have a "backup" of my experiences, out of a sort of suspenders-and-belt feeling that a combination of bits and paper is better than either alone.
Posted by Stephan Terre at 9:00 AM
Friday, August 03, 2007
All is well. I've been pleasantly overwhelmed lately by visitors, Harry Potter, and the general business of life. I shall try to at least catch up on "happenings", although I've been trying to write even just an outline for about a month now, so we'll see how far I get.
My awesome sister-in-law participated in a fund-raising bike ride and raised cashola to fight MS. Someday, when the lab that finds a cure needs $570 to buy a replacement flux capacitor for the cyclotron that will prove to be instrumental in their big discovery, they'll have it!
I saw my neurologist for my one-year checkup and he was very positive. He believes I am currently in remission, and noted that if I stay in remission for 5-10 years, the chance of my disease progressing into disability is virtually nil. Only 9 years to go!
Getting my first renewal on my Avonex prescription through Walgreens was every bit the adventure you might expect from my previous posts, but in the end, Tammy got me my new box with nearly a day to spare before my next shot. I think this is the same Tammy who was so helpful before. If you can just get the superstars at Walgreens Specialty Pharmacy, you do all right.
My injections have mostly gone well. I made the mistake of thinking about a stressful work-related subject just before one, and was barely able to pull myself back to relaxation in time. Later, though, I reflected on how lucky I am to be able to work at all.
My new technique, which I discovered by accident last week, is to adopt a fighting spirit (I use that term because of its connection to Go ). While looking at my beautiful infant son as I prepared for my shot, I suddenly felt/thought something like, "let's get this over with and get back to what's important". So now my weekly weapons against MS are backed up by Advil, self-hypnosis, music, and fighting spirit.
What's this? A post completed? Amazing! And thanks to my wife who, on her birthday, insisted that I write here tonight.
Posted by Stephan Terre at 6:17 PM