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.
Saturday, November 19, 2011
Thursday, November 10, 2011
The ups and downs
I think the uncertainty of each day is one of the hardest parts of this illness. Never quite knowing when you wake in the morning how you will physically feel that day. And, of course, trying to ignore those days that are "bad days".
Last weekend was a great weekend. We were very busy doing just stuff. Saturday started out early at the American Foundation Suicide Prevention community walk here. That was probably my first "mistake"...I stood the entire time, trying to ignore the growing pain in my hips and thighs. Then, off to Walmart to do the grocery shopping and home to CLEAN, really clean, the house, cook, etc. I was so tired, but it sure felt good to have a really clean house. Sunday after church I decided that I was going to clean out the closet in the extra room...that included going through several boxes that never got unpacked after we moved (yes, 4 years ago). Boxes of pictures, wall art, etc. We had fun looking through the old pictures and I hung some things on the walls. I finally settled in on the couch around 8 PM that night. I felt productive and almost like my old life...you know, when you never sit down b/c there is so much to do.
I paid for it this week. I've been sore, fatigued, irritable, etc. Had my lab work for the month...my CPK's are high. Not too bad, but not normal...so, I'm in a mild flair. So much for backing off of the IVIg. Insurance authorization is up in January, so doctor's office is working to submit the information for the next preauthorization. I hope they don't give us any trouble over that authorization. If they force me to go through another major flair in order to prove I need the IVIg, I will not be happy.
Feeling a bit on the down side today, last few days really. I think I'm just tired of the days where I'm fatigued, no energy, and pain issues. I long for the days of running around on a whim and just living life.
Last weekend was a great weekend. We were very busy doing just stuff. Saturday started out early at the American Foundation Suicide Prevention community walk here. That was probably my first "mistake"...I stood the entire time, trying to ignore the growing pain in my hips and thighs. Then, off to Walmart to do the grocery shopping and home to CLEAN, really clean, the house, cook, etc. I was so tired, but it sure felt good to have a really clean house. Sunday after church I decided that I was going to clean out the closet in the extra room...that included going through several boxes that never got unpacked after we moved (yes, 4 years ago). Boxes of pictures, wall art, etc. We had fun looking through the old pictures and I hung some things on the walls. I finally settled in on the couch around 8 PM that night. I felt productive and almost like my old life...you know, when you never sit down b/c there is so much to do.
I paid for it this week. I've been sore, fatigued, irritable, etc. Had my lab work for the month...my CPK's are high. Not too bad, but not normal...so, I'm in a mild flair. So much for backing off of the IVIg. Insurance authorization is up in January, so doctor's office is working to submit the information for the next preauthorization. I hope they don't give us any trouble over that authorization. If they force me to go through another major flair in order to prove I need the IVIg, I will not be happy.
Feeling a bit on the down side today, last few days really. I think I'm just tired of the days where I'm fatigued, no energy, and pain issues. I long for the days of running around on a whim and just living life.
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