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.
Saturday, January 27, 2007
Friday, January 19, 2007
Just a quick note tonight. Tomorrow I want to report on side effects again. Our friend W— was over when it came time for tonight's shot, and I invited her to observe. I like being able to bring other people along with me on this MS journey
of mine. She noticed that I marked my comfort with the injection as a 5 (comfortable), even though I had said that it hurt more tonight than usual. Say what?
I've been pleased to find that my weekly shots are becoming more and more just a part of my routine. At first, I was often very tense beforehand, or nervous that I was going to forget a step and do something wrong. Now it's becoming a lot more natural to prepare everything, do my shot, write up some notes in my Avonex journal, and move on with the evening. Thus, it is comfortable, even if not painless.
I expect that the shot itself will always hurt, whether more or less. I dedicate the pain to the altar of Intention, for it reminds me that I am on a road which leads not to security, but only towards hope. May each week's prick refresh my intention and strengthen my mindfulness.
Posted by Stephan Terre at 9:11 PM
Friday, January 12, 2007
Turns out that last Saturday was actually the perfect time for my son to be born. Audrie's labor started at about 1 AM on Saturday morning, and Leif was finally born at about 5:30 PM on Saturday by C-section. So during the entire time when I was experiencing my side effects, I also had plenty of adrenalin to keep me going. There were a few times when I had to sit down or when I could feel my aches in the background, but for the most part, even with only 2 hours of sleep, I felt okay. Then, once he was born, I had the longest possible time to get to know him, and for us to fit him into our lives, before I had to do my next shot (this evening).
Tonight's shot was another 5 on the 1-5 comfort scale, and was the first time doing my injection with a baby in the house. We've been learning so much about how to be parents that even yesterday would have been noticeably more difficult than today was. Because we've both been so tired, I was glad that we read the directions before every shot. And I did almost try to inject myself without taking off my sweatpants first. But this morning I tried to put my shoes on before my pants, so it's par for the new-baby course.
One new challenge will be keeping track of shot days even while dealing with all the new work of parenting. I have a hard enough time remembering what day it is when I'm solidly in a routine, much less with new challenges arising every 5 minutes! I wonder, also, what my boy will think of his dad's weekly injections. He won't know any time when it was different, so I'm sure it will seem totally natural to him.
We banked some of the baby's blood at the Cord Blood Registry. Maybe someday they'll find a way to use stem cells to cure MS or its effects. If so, there's a 50% chance my son's blood will be my cure (because there's a 50% match his blood is a match for mine). Or maybe someday my boy will be able to avoid a disease of his own, thanks to this investment.
Before today's shot, I commented that now I have one more reason to take this medicine every week. I looked at my sleeping son in my wife's arms after the shot was over, then held him for a few minutes and felt grateful to have this chance to get to know my little boy. For however long I stay healthy, I will cherish every minute I get to spend with him. And should my disease ever progress to disability, I will strive to show him by example how to let nothing stand in the way of love and hope. I pray that day is far away.
In the meanwhile, I have more immediate things to concern me. Tonight, I will be less able to help with midnight diaper changes or to sit with the baby for a while so Audrie can sleep. And we are both concerned about my own sleep. A new unwelcome choice arises: do I try to sleep enough, even though there's a new baby in the house, to try to avoid a stress-related MS flare-up? Or do I help out as much as is needed, but risk trading today's one hour of availability for weeks of absence in the future? In the short term, we have some help in the form of family, friends, and a hired doula. But I don't know what will happen beyond that, as our son grows into an active toddler and little boy. But this is just a fearful shadow. There is no point speculating overmuch. For now, we are just doing our best to attend to today's needs and to support each other as well as we may.
Posted by Stephan Terre at 8:40 PM
Friday, January 05, 2007
There are several times over the next day or so that would be especially inconvenient for the baby to come. One was today (Friday) at about 7:45 PM, right before my shot. We had a plan for getting my Avonex to the hospital and finding a place for me to do my shot there, but I am happy to report that it will not be necessary: we just did my shot and all went well. In fact, I even, after much deliberation and for the first time, marked my comfort with the injection a 5, "comfortable", on the comfort scale from 1 to 5 in my Avonex journal. All the recent ones have been 4s, but today I felt relaxed and calm right up to just before the injection itself.
Now the next-most inconvenient time range for the baby's arrival starts in three or four hours and lasts until about noon tomorrow, as this is when I'll be suffering the strongest side effects. He missed his first window, but the second one is bigger and he may have an easier time hitting it. If not, then heck, it's all a bed of roses! Well, except for minor details like the usual trials of childbirth…
Audrie and I were commenting on how next week, there will be a baby right there in the room with us when it's shot time. How exciting. If I'm sane and awake enough to operate a computer, I'll be sure to let you know how it goes.
Posted by Stephan Terre at 8:22 PM