July 24: Fairly boring updates
Had a great week at UUMAC. Took it easy, rested more than usual.
Prednisone now down to 50 mg/week for the last 4 weeks. Had some minimal lacrimal gland swelling a couple weeks ago so didn't decrease any more. Will decrease to 45 mg/week (5 mg 5 days, 10 mg 2 days) for 3 weeks and then try another decrease. Hoping to get down to 35 mg/week by end of August, and then might need 5mg tablets to cut in half. My goal is to be off the prednisone by the end of the year.
Did I mention the plantar fasciitis? Left foot, have been wearing a splint every night. For some reason the left ankle has been bothering me as well, so taking very easy this week. I didn't go back to pulmonary rehab since wasn't supposed to change anything before the pulmonary stress test, and now the ankle/foot issues are preventing. Maybe next week?
Called for results of test, apparently Dr. Forfia was on vacation last week and it didn't get read by him. The preliminary report when they called back was 'moderate', but then his comment to the NP was 'I've seen worse', which to me would indicate more than 'moderate'. Considering that he sees people going for lung transplants there was no question I wasn't going to rank up in his top 10 (which is fine by me), so somewhat confusing as to degree.
I was hoping to schedule my follow-up with him in September, giving me more time to lose weight, but they insisted on August. It's harder, of course, not being able to move around. Gained a little, then lost again, so back to where I was at appointment a month ago. As you probably know, I do better with pressure and a deadline, so trying to drop 6 pounds before seeing him. Since he wanted me to increase the diuretic to every other day from the once a week I was doing it may help some. My left foot & leg always have swelled more than the right, even more pronounced since the second surgery when they had a lot of the bypass tubing threaded through the left groin, suspect there was some damage to the lymph nodes there, as ever since that side has been much more pronounced with edema. Despite that, I'd attributed not being able to see my foot bones to the swelling from the foot fractures, so it's been a surprise that with more diuretic those bones are once again more visible. It's harder to recognize what the problem is when there are multiple issues in the same area.
It's been nine months now since I've been out of work, and there isn't much to show for it. The first several months were catching up on things long neglected due to the fatigue and not being able to function, and then the last several months have just been one damn thing after another. What I find strange is my total lack of interest in anything professionally medical. I have no interest in journal reading, no interest in keeping up with stuff, and this isn't good. Honestly, I'm not sure if this is some sort of reaction to stopping work and feeling as if my career is over? I'm willing to admit to some reactive depression, which would be pretty normal, especially under the circumstances of ending my career at a relatively early age. In talking to Susan the other day I pointed out that the people who did the best in retirement were the ones who had a lot of other interests and hobbies to replace their time and mental interest once they stopped working. Unfortunately, because the last ten years have been all about survival, I really don't have a lot of hobbies, and before that was working constantly between PA & paramedic on the weekends. There's the beading & jewelry making, but it loses interest with no outlet, because I can't justify spending money on supplies; I've got plenty of stuff here to work with, but no incentive to do anything. There are just so many earrings and bracelets I can make for myself, or for gifts.
It would be best, under the circumstances, to try and find something to do, as it is allowable to make a little money on disability. Having a reason to keep up on things would be good for me. Maybe it's that for my entire life I've always been working towards something, and now there isn't any goal. Except, of course, maintaining my sanity, which does have some credence as a goal.
And, of course, there is the book to be worked on.......
May not be much of any excitement to report for the next few weeks, although you never know with me.
Thanks for checking in, Laurie
P.S. Before signing off got another phone call from Forfia's office: 'aggressive diuresis', so that's going to drop the weight some. And now I know what I'll be doing a lot of!
Prednisone now down to 50 mg/week for the last 4 weeks. Had some minimal lacrimal gland swelling a couple weeks ago so didn't decrease any more. Will decrease to 45 mg/week (5 mg 5 days, 10 mg 2 days) for 3 weeks and then try another decrease. Hoping to get down to 35 mg/week by end of August, and then might need 5mg tablets to cut in half. My goal is to be off the prednisone by the end of the year.
Did I mention the plantar fasciitis? Left foot, have been wearing a splint every night. For some reason the left ankle has been bothering me as well, so taking very easy this week. I didn't go back to pulmonary rehab since wasn't supposed to change anything before the pulmonary stress test, and now the ankle/foot issues are preventing. Maybe next week?
Called for results of test, apparently Dr. Forfia was on vacation last week and it didn't get read by him. The preliminary report when they called back was 'moderate', but then his comment to the NP was 'I've seen worse', which to me would indicate more than 'moderate'. Considering that he sees people going for lung transplants there was no question I wasn't going to rank up in his top 10 (which is fine by me), so somewhat confusing as to degree.
I was hoping to schedule my follow-up with him in September, giving me more time to lose weight, but they insisted on August. It's harder, of course, not being able to move around. Gained a little, then lost again, so back to where I was at appointment a month ago. As you probably know, I do better with pressure and a deadline, so trying to drop 6 pounds before seeing him. Since he wanted me to increase the diuretic to every other day from the once a week I was doing it may help some. My left foot & leg always have swelled more than the right, even more pronounced since the second surgery when they had a lot of the bypass tubing threaded through the left groin, suspect there was some damage to the lymph nodes there, as ever since that side has been much more pronounced with edema. Despite that, I'd attributed not being able to see my foot bones to the swelling from the foot fractures, so it's been a surprise that with more diuretic those bones are once again more visible. It's harder to recognize what the problem is when there are multiple issues in the same area.
It's been nine months now since I've been out of work, and there isn't much to show for it. The first several months were catching up on things long neglected due to the fatigue and not being able to function, and then the last several months have just been one damn thing after another. What I find strange is my total lack of interest in anything professionally medical. I have no interest in journal reading, no interest in keeping up with stuff, and this isn't good. Honestly, I'm not sure if this is some sort of reaction to stopping work and feeling as if my career is over? I'm willing to admit to some reactive depression, which would be pretty normal, especially under the circumstances of ending my career at a relatively early age. In talking to Susan the other day I pointed out that the people who did the best in retirement were the ones who had a lot of other interests and hobbies to replace their time and mental interest once they stopped working. Unfortunately, because the last ten years have been all about survival, I really don't have a lot of hobbies, and before that was working constantly between PA & paramedic on the weekends. There's the beading & jewelry making, but it loses interest with no outlet, because I can't justify spending money on supplies; I've got plenty of stuff here to work with, but no incentive to do anything. There are just so many earrings and bracelets I can make for myself, or for gifts.
It would be best, under the circumstances, to try and find something to do, as it is allowable to make a little money on disability. Having a reason to keep up on things would be good for me. Maybe it's that for my entire life I've always been working towards something, and now there isn't any goal. Except, of course, maintaining my sanity, which does have some credence as a goal.
And, of course, there is the book to be worked on.......
May not be much of any excitement to report for the next few weeks, although you never know with me.
Thanks for checking in, Laurie
P.S. Before signing off got another phone call from Forfia's office: 'aggressive diuresis', so that's going to drop the weight some. And now I know what I'll be doing a lot of!
posted by Laurie @ 2:22 PM
1 Comments:
At 6:55 AM,
Anonymous said…
Laurie,
Good luck w\the weight fight!
Glad you are thing about writing a couple of books, yea
Deneen
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