We have come a long way since the middle of May. We reached a few milestones this week. Big Guy worked for the first time on Wednesday and Friday with Son1 as a helper. Yesterday, all four of us went together to swim and have a cookout. Big Guy drove. I can tell that today will need to be a resting day after such an active week. I am making progress in shifting my view of Big Guy as a sick person (sick in bed!) to a person who can go do normal stuff some or most of the time. This has been a big challenge. I can still see that IV pole in our bedroom and imagine him peeing in a bottle. But BG is so much more than his MS. I need to work on how to shift appropriately from someone in a nursing type role to someone in a spouse role. I usually have a foot in each role. I am aware of watching, monitoring, analyzing.Thinking about the medication. Watching for injection site reactions. And of course we get calls from the special pharmacy and the Rebif people so there is no way to "forget" what is going on in Big Guy's brain.
Rebif: BG has two more 22mcg injections before moving up to the maintenance 44 mcg dose. So far the injections have not been too bad. BG refuses to let me do any, so I guess I'll be on duty for that if/when BG is too sick to do his own. I know one thing. I'd much prefer to do straight injections but BG can't stand the sight of a needle. He is also resistant to using parts other than his stomach for injections. I'm sure he'll need to rotate more over time. A caution to those of you using the Rebif Rebiject II. Remember the step where you remove the cap from the syringe or you may end up with a dose of medicine on your floor. Yes it happened here. Even though you may not think you need it, use the flip chart of instructions every time for a while. If you are nervous, tired or rattled, you may make an error like this that you would never normally make. BG is a perfectionist and has no problem with gadgets and tools. Yet he screwed up. I was trying to relax and deal with my own general anxiety at the time (hot pack, eyes closed, Meditation Oasis guided relaxation on iPod) when I heard a lot of swearing!
Showing posts with label Rebif. Show all posts
Showing posts with label Rebif. Show all posts
Sunday, July 10, 2011
Tuesday, June 21, 2011
Improving Slowly?
OK. Last night was BG's first Rebif shot without a nurse present and he did a great job. He is using the Rebif II Autoinjector. It did not hurt a bit. He used a spot on his belly, noted it in the Rebif Journal, and went to sleep. No obvious reactions at the site.
Yesterday BG came out at dusk and walked unassisted around the yard with faithful dog! That was huge. The day before he showered, sat at the table and told a story sounding like his "old self," and then actually went out and got on his beloved lawn tractor (scaring the s**t out of me) and mowed for 20 minutes. (These days if he is anywhere but in bed or the bathroom I am shocked.) He was exhausted after that. But it was wonderful. Is it the effects of five days of 1000mg IVSolu-Medrol last week? Is it the Rebif? Is it just the natural course of this hellish episode? I don't know. But I see a positive trend.
One thing is certain. This is slow and this is unpredictable from hour to hour and day to day. Maybe this is one of the lessons of this stupid disease. One must be patient each moment and deal with what comes. Each moment may present a disappointment or a gift or just more of the same. We must cherish the gifts and breathe through the rest. To me it feels like an emotional marathon. I just can't maintain hyper stress for this long. My body can't do it. Our family can't do it. We need to learn a new way to be which as strange as it sounds, requires us to relax emotionally around the MS. To find some peace with it, in spite of it.
Yesterday BG came out at dusk and walked unassisted around the yard with faithful dog! That was huge. The day before he showered, sat at the table and told a story sounding like his "old self," and then actually went out and got on his beloved lawn tractor (scaring the s**t out of me) and mowed for 20 minutes. (These days if he is anywhere but in bed or the bathroom I am shocked.) He was exhausted after that. But it was wonderful. Is it the effects of five days of 1000mg IVSolu-Medrol last week? Is it the Rebif? Is it just the natural course of this hellish episode? I don't know. But I see a positive trend.
One thing is certain. This is slow and this is unpredictable from hour to hour and day to day. Maybe this is one of the lessons of this stupid disease. One must be patient each moment and deal with what comes. Each moment may present a disappointment or a gift or just more of the same. We must cherish the gifts and breathe through the rest. To me it feels like an emotional marathon. I just can't maintain hyper stress for this long. My body can't do it. Our family can't do it. We need to learn a new way to be which as strange as it sounds, requires us to relax emotionally around the MS. To find some peace with it, in spite of it.
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