I appear to have missed much of March and lost all of April. Have you been watching this space? Oh, you noticed I wasn't blogging at all. Can't slip anything past you, can I?
So last update, I was tired and waiting for news when to start the new medication, Mycophenolate mofeti, the generic version of Cellcept. I started using it and but hadn't noticed much change, read the directions again, and reaffirmed that it had to be take on an empty stomach. This really messes up my life, because I tend to graze in a rather unhealthy way. So "take on an empty stomach" means taking it at 6 am and not having anything to eat until 7 am, while I am preparing lunches for my offspring, making tea, and so on. The morning installment isn't too bad, but it seems that the evening tends to stretch on. I was trying to take the Cellcept 2 hours after supper and then waiting another hour after that to take the final round of my other meds, but somehow a snack sneaked in and messed that up. So I decided to take the final round of meds at 9 pm, wait 2 hours until 11 pm for the Cellcept and then have that just before bedtime.
In a perfectly regulated world, that would work just fine. However, if I have dinner late, snack later, and don't get those meds taken at 9 pm, everything tends to run later than that. Last night I got lost watching an old remake of Shakespeare's "Tempest" on TV. I wondered whether it was the one I was planning to use in my student teaching practicum in 1983, but realized that it was way too different from the text to be that one ... plus there was a fair bit of gratuitous nudity (male and female) which I would never (then or now) show to a high school class. By the time I got to bed, it was after 1 am, and I lay there and lay there and rolled over ... it was hot and I was not sleepy.
When I got up this morning at 6 am, I took my Cellcept and went back to bed. I was supposed to take my weekly Fosavance (helps with maintaining calcium in my bones) 2 hours after that, but in my sleep-fogged state, I took another dose of Cellcept. Brilliant! I continued my morning routine, which included more meds and breakfast, then tried to put my hair up in French braids before church. The back was quite nice, but all the front all fell down from the braids. So I went with hair down and probably scared everyone. When I came home after church, I redid the "do" and it turned out quite nicely.
The other medication that is complicating life as we know it is Prednisone. The latest blood work showed a muscle enzyme level that had risen to more than 3500 ... probably the worst in my memory. So I talked to the doctor and the doctor left a note for my regular GP to contact the rheumatologist in Kelowna, and that probably took a week to get sorted out. Back to the major doses of Prednisone for me ... 50 mg (10 pills) per day for a few days to hit the flare-up and knock it down, then reducing the dosage regularly. Blood tests in two weeks to see how things are going.
Of course, my kids have never seen me on megadoses of Prednisone before, and after the first day or two, they were actually quite impressed. Instead of lying on the couch avoiding the inevitable torture of preparing supper for several implacable appetites, I had a plan and ingredients and supper cooking yesterday evening ... and even had it ready by 6:05 pm! Today was a little messed up though, as there was a pack of girls in the house, and the boys went out to eat with other friends of theirs, so I didn't have to be quite as ambitious (husband was content with perogies and weiners, and a little peace and quiet).
The difference in energy with the increase in prednisone is quite amazing. This week I managed to do 3 days of teaching ... actually two half days and one full day, but it did mean that I drove out to Lumby three days in a row. Saturday, I managed to run errands, attend a board meeting, followed by a memorial service, and a few more errands, then came home for lunch and a bit of a lie-down before the arrival of the boys from work ... and the start of my supper preparations. A week or so ago that much activity would have had me couch-bound and complaining. I do have to watch that I don't do too much, because this false energy is not backed up with any muscle strength, so I can really do myself some damage if I'm not careful. (Don't want to be back in physiotherapy again!)
Well, tomorrow is another day ... and I'll be back to work at the Historic O'Keefe Ranch, just outside Vernon. We officially open on Mother's Day (Sunday) but there are school tours beginning this week, and apparently there is work for me to do tomorrow. Fun fun fun. I am looking forward to it. This will be my third season, and I am still saying that this is the best job I've ever had.
No comments:
Post a Comment