I'm off of the prednisone. I know there are good things about that drug. Without it many people would suffer from many things...but, there are so many bad things that come with it. So I cheerfully say farewell to the Prednisone, and hope to never have to swallow you again!
How's it going? Well, I'm unusually fatigued today. But, that's to be expected for a couple of weeks while my adrenal glands are kicking in and working on their own. They've not had to work for themselves for several years now. Time to stop being lazy and do their own work.
Maybe some of this excess weight will come off now. And the moodiness, irritability, etc.
Of course, we all continue to hope that my CPK levels will remain in the normal levels.
Wednesday, June 22, 2011
Sunday, June 12, 2011
Prednisone Free - almost!
One more decrease and then I stop it all together. So, just a few more weeks and then I'm off of the prednisone. Hopefully for good. That really feels good.
IVIg this last Thursday and Friday. Labs showed CPK was at the high end of normal...but still normal. My SED rates were elevated though.
I've been feeling fairly well. I've only had one fall in the last month. My energy level...well, it starts out okay, but it drains quickly. So, I can do things in short spurts. If that makes sense. Dr. L thinks I need to increase the time I'm putting into exercise...from 3 days to 5 days a week. I do something everyday, but she wants me to do more. It'll help with losing some of this prednisone weight and, possibly, regaining strength and range of motion.
IVIg this last Thursday and Friday. Labs showed CPK was at the high end of normal...but still normal. My SED rates were elevated though.
I've been feeling fairly well. I've only had one fall in the last month. My energy level...well, it starts out okay, but it drains quickly. So, I can do things in short spurts. If that makes sense. Dr. L thinks I need to increase the time I'm putting into exercise...from 3 days to 5 days a week. I do something everyday, but she wants me to do more. It'll help with losing some of this prednisone weight and, possibly, regaining strength and range of motion.
Saturday, June 4, 2011
Heat Intolerance
It's only in the 90's and I'm miserable...even in the air conditioning. I wonder what causes the heat intolerance? Is it the polymyositis? The medications? Or some other underlying condition we've yet to discover? Whatever it is...go away.
The results of my testing...evidently I'm not digesting my food quickly enough. A "normal" person digests their food (most of it) within 30ish minutes. Doc said after 6 hours I'd digested about 1/4 of my food. He says that is fairly common for people with Polymyositis. Interesting. I've never read that, but it makes sense...those muscles of mine just don't want to work properly.
IVIg next week.
The results of my testing...evidently I'm not digesting my food quickly enough. A "normal" person digests their food (most of it) within 30ish minutes. Doc said after 6 hours I'd digested about 1/4 of my food. He says that is fairly common for people with Polymyositis. Interesting. I've never read that, but it makes sense...those muscles of mine just don't want to work properly.
IVIg next week.
Sunday, May 29, 2011
Tuesday, May 17, 2011
Progress and diet changes
My CPK levels were a tad bit high yesterday. But, not that high...so, I'm still saying we're in the normal range ;) I think that Dr. Lowery will continue to let me decrease my prednisone. Shouldn't be too much longer now and I'll be totally off of that stuff. I think I'm going to plan a celebration for the day I take the last one! There really is nothing I like about that drug.
Then, the next step...we're going to try going longer between IVIg infusions. I'm a bit worried about it just b/c I have the attitude of "don't fix something that isn't broken"...I mean, it's working, why mess with it? But, I know that insurance isn't going to keep paying for it without proof that I still need it and the only proof that they will accept is tapering me off and seeing if I become worse. So, we shall see.
I've not been able to make it to the gym much in the last two weeks b/c of medical things, but I'll be getting back to that too. It was going fairly well. Progress was slow, but there was progress none-the-less. :)
Had to have some swallowing tests, and EGD, and some other test...so, we already knew that the muscles of my esophagus had been affected and were causing swallowing difficulty. But, I'm also experiencing some severe reflux. So, now I have ulcers on my esophagus and they need to heal. And, something about my food is not digesting, so it's sitting in my stomach...I guess that is causing the reflux? who knows. But, I have a couple of new medications and need to make some diet changes. But, the list of things to eat, I normally eat anyway, so that shouldn't be too difficult. We shall see.
Then, the next step...we're going to try going longer between IVIg infusions. I'm a bit worried about it just b/c I have the attitude of "don't fix something that isn't broken"...I mean, it's working, why mess with it? But, I know that insurance isn't going to keep paying for it without proof that I still need it and the only proof that they will accept is tapering me off and seeing if I become worse. So, we shall see.
I've not been able to make it to the gym much in the last two weeks b/c of medical things, but I'll be getting back to that too. It was going fairly well. Progress was slow, but there was progress none-the-less. :)
Had to have some swallowing tests, and EGD, and some other test...so, we already knew that the muscles of my esophagus had been affected and were causing swallowing difficulty. But, I'm also experiencing some severe reflux. So, now I have ulcers on my esophagus and they need to heal. And, something about my food is not digesting, so it's sitting in my stomach...I guess that is causing the reflux? who knows. But, I have a couple of new medications and need to make some diet changes. But, the list of things to eat, I normally eat anyway, so that shouldn't be too difficult. We shall see.
Friday, May 13, 2011
Yet another day with Polymyositis
I've been poked and prodded by doctors more than I care to think about in the last 2 1/2 weeks. I'm quite tired of doctors right now. Yet, I still have my IVIg treatment on Monday and Tuesday next week.
Had some minor surgery about 1 1/2 weeks ago. That went really well. Then had an EGD on Wednesday of this week. Evidently I have ulcers on my esophagus, caused by reflux. Reflux could be caused by all the medications I'm taking. who really knows. Today I had to do another test. I'm don't really remember the name of it, but it took about two hours. I'll know the results of that on Monday.
I'm feeling really tired. No energy. Don't really know what to do with myself. I'm bored, but when I get up to do anything, my energy just drains and I hurt.
Blah.
Had some minor surgery about 1 1/2 weeks ago. That went really well. Then had an EGD on Wednesday of this week. Evidently I have ulcers on my esophagus, caused by reflux. Reflux could be caused by all the medications I'm taking. who really knows. Today I had to do another test. I'm don't really remember the name of it, but it took about two hours. I'll know the results of that on Monday.
I'm feeling really tired. No energy. Don't really know what to do with myself. I'm bored, but when I get up to do anything, my energy just drains and I hurt.
Blah.
Tuesday, April 19, 2011
Back to the Gym
Today I went to the gym. This was the first time since being diagnosed with Polymyositis in 2007.
It kicked my rear end! And, all I did was 20 minutes! First I tried to do the stair elliptical machine...couldn't do that at all. I guess if I can't walk up stairs, I should realize that I can't do this machine! oh well. So, I ended up just using the treadmill for 20 minutes. I walked at about 2 mph only! In 20 minutes I made it 1/2 mile, according to the machine. My legs felt like jelly. I wasn't sure I'd be able to make it to the van afterward.
I've come a long way from when I was first diagnosed. It's taken 3 1/2 years, but I can walk with my cane, can lift things (not everything, but some), etc. But, doing things like going to the gym today is a reminder of how far I have to go...how far from "normal" I really am.
Still, I did 20 minutes at the gym. It's still better than it was a few months ago :)
It kicked my rear end! And, all I did was 20 minutes! First I tried to do the stair elliptical machine...couldn't do that at all. I guess if I can't walk up stairs, I should realize that I can't do this machine! oh well. So, I ended up just using the treadmill for 20 minutes. I walked at about 2 mph only! In 20 minutes I made it 1/2 mile, according to the machine. My legs felt like jelly. I wasn't sure I'd be able to make it to the van afterward.
I've come a long way from when I was first diagnosed. It's taken 3 1/2 years, but I can walk with my cane, can lift things (not everything, but some), etc. But, doing things like going to the gym today is a reminder of how far I have to go...how far from "normal" I really am.
Still, I did 20 minutes at the gym. It's still better than it was a few months ago :)
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