So, my blood transfusion went well. A friend came by and hung out with me for a few hours, which was lovely. The transfusion really helped my color (I was looking a bit pale), and I feel better, and my balance is improved, so that was all good.
I am a little surprised by how much time I spend in the hospital now. I have two appointments a week, and they take about 3 hours each of my day. Additionally, I am likely need a blood transfusion every other week, and that is about 6 hours out of my day. Then I have the inpatient therapy, which is 4-6 days every three weeks (depending on whether it is the "A" schedule or the "B" schedule. I had no idea what to expect, so I had no preconceived notions of how it would all go. I recognize that this is essentially my job for the next year or two (if all goes well). At least I have time when I am NOT in the hospital. :)
My energy level seems to be picking up slightly. I have an appointment with the doctor tomorrow, and one of the things that we will be going over are some recommendations for working out. I have been just doing walks, stretching (not really yoga), and a little bit of tai chi. A good friend of mine is going to start teaching me some more, so that will be fun.
It is overcast rainy day today. A perfect day to nap and relax. I am still sleeping about 12 -14 hours a day. I bit of an increase from my 4 hour schedule that I did all last year. It makes the days very short. After the 4 hours that it takes me to eat, that is most of my day. Despite the fact that I do not have much of an appetite, food is a major highlight of my day. Praise the cook! Cooks, really, as a number of my friends have brought over wonderfully tasty treats.
It is all very strange. I am living a completely different life than I would have imagined just last month. It is not bad, it just has weirdly different priorities, foci, and routines. I think that I am rolling well with it, staying relaxed and living one day at a time - not worrying about what is next, or how long this will all take, but it is a little bizarre. Other than eating and sleeping, my time consists of having a call with a friend, reading a bit, surfing reddit, and do a little writing or sketching. I hope that next week I will have the energy to hit some low-key projects around the house - mostly wiring. I am not very good at just hanging out and relaxing, but the fatigue helps me from overexerting myself. I guess that is what it is for. :)
I am a little surprised by how much time I spend in the hospital now. I have two appointments a week, and they take about 3 hours each of my day. Additionally, I am likely need a blood transfusion every other week, and that is about 6 hours out of my day. Then I have the inpatient therapy, which is 4-6 days every three weeks (depending on whether it is the "A" schedule or the "B" schedule. I had no idea what to expect, so I had no preconceived notions of how it would all go. I recognize that this is essentially my job for the next year or two (if all goes well). At least I have time when I am NOT in the hospital. :)
My energy level seems to be picking up slightly. I have an appointment with the doctor tomorrow, and one of the things that we will be going over are some recommendations for working out. I have been just doing walks, stretching (not really yoga), and a little bit of tai chi. A good friend of mine is going to start teaching me some more, so that will be fun.
It is overcast rainy day today. A perfect day to nap and relax. I am still sleeping about 12 -14 hours a day. I bit of an increase from my 4 hour schedule that I did all last year. It makes the days very short. After the 4 hours that it takes me to eat, that is most of my day. Despite the fact that I do not have much of an appetite, food is a major highlight of my day. Praise the cook! Cooks, really, as a number of my friends have brought over wonderfully tasty treats.
It is all very strange. I am living a completely different life than I would have imagined just last month. It is not bad, it just has weirdly different priorities, foci, and routines. I think that I am rolling well with it, staying relaxed and living one day at a time - not worrying about what is next, or how long this will all take, but it is a little bizarre. Other than eating and sleeping, my time consists of having a call with a friend, reading a bit, surfing reddit, and do a little writing or sketching. I hope that next week I will have the energy to hit some low-key projects around the house - mostly wiring. I am not very good at just hanging out and relaxing, but the fatigue helps me from overexerting myself. I guess that is what it is for. :)
> this is essentially my job for the next year or two
ReplyDeleteLousy pay and benefits, but I hope the retirement is good! Now, about those TPS reports. . . .