Got me if I even spelled that right. But, I've got it now. Thank you methotrexate, thank you immune system. Wonder what my immune system has against my body?
The coughing is driving me crazy. Three months of it now. Shortness of breath. Fatigue. The pulmunologist made me start back on steroids to get the inflammation down in my lungs. Don't think it's working.
Friday, August 31, 2012
Friday, June 22, 2012
Pneumonia, Bronchitis, and other fun stuff
I had a little annoying cough for a couple of days so I called the doc to let her know since it was getting close to the time for my IVIg treatment. She wanted me to come in and see my GP, have a chest x-ray done and hold my methotrexate until further notice...just to rule out anything. So, I did and ended up being told that I had pneumonia and bronchitis and told I couldn't go to work until further notice (stay away from people or you could catch other things). So, for the last 9 days I've been at home going crazy. I did finally get permission to go back to work on Monday. I'm not looking forward to the stack of stuff I'll have waiting for me to do. I had my IVIg yesterday and today. My CPK levels were elevated. I'm assuming that's b/c of two things...one, I had to with hold the methotrexate and two, I've been fighting off this pneumonia and bronchitiis. Also, my liver enzymes are elevated. Not sure what that means yet, but Dr. Lowery's office will call on Monday. They've been elevated before so I'm not too concerned.
Saturday, May 5, 2012
Polymyositis, CPK levels, and WBC
It's been awhile since I've written anything just b/c things have been about normal. Whatever that is when you live with Polymyositis. Every month I go in to have my lab work taken and my CPK levels are elevated. Not super, super high...but I can generally tell you they're going to be high. Then, I have my IVIg treatments and my CPK levels go back down to close to normal. Hardly ever do they actually get normal, but they're so close to it I'll count it. Then the cycle starts all over.
My doctor said something in one of our appointments, or maybe it was one of her notes that I read, that I was at baseline. That kind of made me sad really. While I've come a long way from when I was diagnosed, I'm no where near where I was (physically). I was still wishing for more improvement. I mean, in my heart I knew that after this long, I'd probably progressed as much as I'm going to and now every thing is to maintain and not get worse. Still it was hard to hear it. I mean, I still have difficulty lifting "heavy" things (heavy is a relative term here), get off balance quite often, can't walk long distances or in places that aren't level/etc...on and on. But, I can walk (most of the time), I can dress myself, I can feed myself...I guess it's all good. blah.
Doc said that my white blood count was a bit low last month. Not too worried right now. With the combination of medications I'm on may cause my WBC to drop occasionally...as long as it doesn't stay low or doesn't get too low we'll be okay. Otherwise, we have to start playing with medications...and since my polymyositis is resistant to medications, that's not something I want to do.
My doctor said something in one of our appointments, or maybe it was one of her notes that I read, that I was at baseline. That kind of made me sad really. While I've come a long way from when I was diagnosed, I'm no where near where I was (physically). I was still wishing for more improvement. I mean, in my heart I knew that after this long, I'd probably progressed as much as I'm going to and now every thing is to maintain and not get worse. Still it was hard to hear it. I mean, I still have difficulty lifting "heavy" things (heavy is a relative term here), get off balance quite often, can't walk long distances or in places that aren't level/etc...on and on. But, I can walk (most of the time), I can dress myself, I can feed myself...I guess it's all good. blah.
Doc said that my white blood count was a bit low last month. Not too worried right now. With the combination of medications I'm on may cause my WBC to drop occasionally...as long as it doesn't stay low or doesn't get too low we'll be okay. Otherwise, we have to start playing with medications...and since my polymyositis is resistant to medications, that's not something I want to do.
Saturday, February 4, 2012
Stress, Polymyositis and other stuff
What a week.
I wonder how stress affects the symptoms of Polymyositis? I was reading somewhere else where it was talking about those diagnosed with Polymyositis had some type of stressful/traumatic type of event that triggered the onset. Now, if I think back, I did have an extremely, over the top stressful month prior to becoming ill. But, as with all things, there were just as much being said about all those diagnosed without the stress as a precursor...so, it remains unknown.
What we do know, however, is that stress can trigger relapses of symptoms. So, I wasn't surprised when my CPK levels were on the high side when I had my lab work done this week. The week prior has been crazy stressful.
While my van is in the shop, I've rented a car for the weekend. Okay, so I realize I still need my conversion van, even if I'm not in the wheelchair. Getting in and out of a car is nearly impossible. I did it, with much difficulty. (But, I sure like the gas mileage better on a little car).
Mik had her first formal last night. She's growing up too fast. Before I know it she'll be moving away :(
I wonder how stress affects the symptoms of Polymyositis? I was reading somewhere else where it was talking about those diagnosed with Polymyositis had some type of stressful/traumatic type of event that triggered the onset. Now, if I think back, I did have an extremely, over the top stressful month prior to becoming ill. But, as with all things, there were just as much being said about all those diagnosed without the stress as a precursor...so, it remains unknown.
What we do know, however, is that stress can trigger relapses of symptoms. So, I wasn't surprised when my CPK levels were on the high side when I had my lab work done this week. The week prior has been crazy stressful.
While my van is in the shop, I've rented a car for the weekend. Okay, so I realize I still need my conversion van, even if I'm not in the wheelchair. Getting in and out of a car is nearly impossible. I did it, with much difficulty. (But, I sure like the gas mileage better on a little car).
Mik had her first formal last night. She's growing up too fast. Before I know it she'll be moving away :(
Saturday, January 7, 2012
Jan 2012
Welcome to 2012.
Started out the new year with IVIg treatments. Insurance approved another year of treatment. My CPK levels were slightly elevated, but not much and came down to normal right after my treatment this last week. Lab work also showed that liver enzymes are elevated. Heck if I know what that means though.
Oh, and, another good start to the new year...had to buy a new dishwasher and have mega repair done to the van today. I'm officially more than broke as of today.
Started out the new year with IVIg treatments. Insurance approved another year of treatment. My CPK levels were slightly elevated, but not much and came down to normal right after my treatment this last week. Lab work also showed that liver enzymes are elevated. Heck if I know what that means though.
Oh, and, another good start to the new year...had to buy a new dishwasher and have mega repair done to the van today. I'm officially more than broke as of today.
Friday, December 23, 2011
Merry Christmas
Christmas day is in just two days. I did 99% of my shopping online this year. The thought of walking through stores and being pushed around was a bit overwhelming. Nice to just have things delivered to the door. Now if only someone would clean the house, cook dinner...and bathe the dogs (they're filthy). Life would be almost perfect.
Dr. L. lowered my methotrexate a tiny bit due to some possible side effects. I'm not convinced it was b/c of the methotrexate, but it could have been...we shall see. My CPK numbers are close to normal, but she's determined that I can't back off of the IVIg just yet. So, we start the process of gaining insurance approval for another year. I suppose the insurance could always deny it...then, I don't know what we do. Well, she did mention the possibility of trying Cellcept again. But, since I ended up in the hospital both times I took it, I'm not optimistic on that one.
I'm still able to walk around with a cane. Around the house I practice without it, but I lose my balance a lot. Thank goodness for furniture to grab, otherwise the floor and I would get to know each other quite well. I'm determined, though, to eventually be cane free again.
Dr. L. lowered my methotrexate a tiny bit due to some possible side effects. I'm not convinced it was b/c of the methotrexate, but it could have been...we shall see. My CPK numbers are close to normal, but she's determined that I can't back off of the IVIg just yet. So, we start the process of gaining insurance approval for another year. I suppose the insurance could always deny it...then, I don't know what we do. Well, she did mention the possibility of trying Cellcept again. But, since I ended up in the hospital both times I took it, I'm not optimistic on that one.
I'm still able to walk around with a cane. Around the house I practice without it, but I lose my balance a lot. Thank goodness for furniture to grab, otherwise the floor and I would get to know each other quite well. I'm determined, though, to eventually be cane free again.
Saturday, November 19, 2011
Cold, Comforters, and Polymyositis
It was cold last night. One of those nights that I've been dreading the last several years b/c since being tortured with Polymyositis, simple things, like blankets and comforters can't be used. Last year, not only did I not have the strength to pull the comforter up over my body (had to ask my daughter to help), once it was there, it felt like it was so heavy it was crushing my body...I couldn't take it.
So, anyway, last night was cold. Without really thinking about it, I reached down and pulled up the comforter. I pulled it up. And, I slept all night with the comforter over me. It didn't feel like it was crushing my entire body. Of course, I just had IVIg treatments last week...so, I'm doing fairly well this week. Maybe this will hold out for awhile. I'd forgotten (not really) how much I love to snuggle under warm blankets.
So, anyway, last night was cold. Without really thinking about it, I reached down and pulled up the comforter. I pulled it up. And, I slept all night with the comforter over me. It didn't feel like it was crushing my entire body. Of course, I just had IVIg treatments last week...so, I'm doing fairly well this week. Maybe this will hold out for awhile. I'd forgotten (not really) how much I love to snuggle under warm blankets.
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