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.

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.

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.

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.

Oct. 7, 2011

Just finished two days of IVIg infusions for the month. My CPK numbers were SLIGHTLY elevated at the beginning, but came back down again. So, for November, I'm going to go in and have lab work done the day before IVIg is scheduled. That means the lab results will be in Dr. L's hands at my appointment the next morning. If my CPK levels are normal, then we will cancel IVIG for the time being. I'll continue to get lab drawn every few weeks to make sure that it doesn't climb back up. If it does, then I'll have to get right back in for another infusion.

Not sure how I really feel about it. I mean, I'm glad that my labs have looked good, but we know that the IVIg works for me. Each time we've tried to stop it, I've gone into a flare. Why can't we just keep going? Why fix something that isn't broken, you know? It's all b/c of insurance. To prove to the insurance company that I need it, I have to stop taking it and flare up. Nice. They aren't the ones that will take a few months recovering from the flare.

Pet peeves

There are things that I've likely taken greater notice of in the last few years b/c of this Polymyositis...and some have become pet peeves of mine. They really drive me crazy.

There are not enough handicapped parking spots, esp if you need a wheelchair.

There are too many people using the parking spots that don't need them...i.e. they use someone's temporary placard to park. This takes away the parking spots from those who really do need them. I only use them when I have to, despite having a permanent tag...and, if I can park somewhere that's not labeled handicapped, but I can still get out w/a wheelchair, then I do, leaving open the others for someone who might come behind me.

Motorcycles that park illegally, blocking ramps for vans/wheelchairs. Walmart in Cabot is horrendous about this. It got better after I sent a letter/complaint to the Cabot police office, but it's started back up again.

Grass that won't mow itself. Have a feeling this is a "pet peeve" I'll have to learn to deal with.

People that tell me how great I look when I feel horrible!

Stores that have the isles of things so close together, that you can't get your wheelchair through it. It's hard enough to walk through it w/my cane.

and, so many others. Guess I need to learn to deal with things.

Imuran Increase

So, Dr. Lowery decided to increase my Imuran instead of restarting prednisone. I'm glad about not restarting the prednisone :) Hopefully everything will be okay with the increase of Imuran.

I've been feeling a bit run down lately. I'm glad today is Friday and I don't have to go to work tomorrow. Maybe I just need to have some downtime.