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.

Flare

Well, my lab results from yesterday indicated an elevated CPK level. Kinda expected that as I've been feeling the tired muscles. Doing simple things such as getting dressed felt more like marathon workouts. I'm having trouble holding a hairdryer to dry my hair.

After my two IVIg infusions, it came back down again, but it's obvious it's climbing between infusions. So, Dr. Lowery is taking the weekend to read the latest research just to see if there is anything new out there (don't think there is), then she will call me next week with options. I made many options that did not include restarting prednisone. Hm. Wonder if she'll listen to me.

This so wasn't in the plan. My plan anyway. Guess God has a different one.

Life without Prednisone

It has been a short while only, but I'm exhausted. Dr. Lowery said it would take some time for my adrenal glands to kick in and do their thing. Each time I lowered the dose of prednisone, I was fatigued...well, Dr. L said it was due to the tapering. I just think it's life with Polymyositis. Taking that last dose of Prednisone, though...wow. I've been more than a little tired. And nauseous. And itching all over (that's about to drive me crazy). I didn't make it to the gym to do my exercises last week...the thought of it was too overwhelming. This week, I work two days then have two days of IVIg infusions. Maybe that will help get a bit of energy back.

No loss of muscle strength that I've noticed though. That's a good thing.

No More Prednisone!

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.

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.

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.