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.

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.

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 :)

Having good doctors :)

I love my doctor, Dr. Lisa Lowery. But, she was wrong. My CPK from yesterday was still normal. YES! I still love Dr. Lowery :) ha.

So, I guess I have to wait for the phone call to see if she's going to let me continue with the prednisone decrease. That call probably won't come until around Tuesday, and I'm hoping for a "continue to decrease".

She did give me an order to return to physical therapy due to weakness/pain in my hips. So, I'll have to arrange for that sometime as well. There isn't enough time during the day to do it all.

She did say I can continue to go to the gym during the week to work out as much as I tolerate.

The tingling/numbness in my hands and feet could be carpel tunnel or it could be neuropathy. Have a feeling it was neuropathy. All the little "tests" she did for carpel tunnel she did were fine. But, which ever it is, right now it is mainly a frustration not anything serious...so, I'm just going to watch the symptoms and report back to her.

Ups and Downs

So much has been going on this week. Had yearly mammogram that had "areas of concern", so had to repeat it. That lead to ultrasound. But, in the end it seems that everything appears okay. I just need to follow up and repeat again in 6 months.

Had a fall in the bathroom. A couple of close calls else where. I seem to have become the clumsiest person I know. I trip over my own feet...like I'm not picking my feet up high enough or something? Dunno. But, I let Dr. Lowery know about it this morning.

So, anyway, had my first day of IVIg for the month. This evening my body aches something awful. I hate it when I have this kind of side effect. But, I'm glad that I don't have the migraine that generally comes with it.

Dr. Lowery thinks that when we get my CPK levels back from today's lab, they will be elevated. :( She did the muscle strength tests that she does and commented that she thinks I'm weaker than last month. I made some face, indicating I didn't like her assessment...so, she redid the muscle strength tests and said, "yeah, same as what I just did" There's still a chance she's wrong and the CPK levels will be normal. I'd like for her to be wrong this time. :)

She also thinks that the tingling and numbness that I'm getting in my hands and feet are likely neuropathy. Having an autoimmune disorder does increase your risk for it...but, I'm really not sure what you do about it.

Spring Time

Spring time is here and the weather has been beautiful. I've been trying to encourage (umm, make) MiKaila get out and exercise more...she's so lazy! I've been doing more myself. Next week is my monthly appointment with Dr. Lowery. I'm wondering if she'll be able to notice on the strength testing. I'm using Therabands at home to do some strength building. After all this, I'm still shocked at times at the weakness in areas, esp in my hips. My hip flexors are especially weak. I guess that's why I seem to have more pain in my hip area?

I've also joined the gym at work. It's inexpensive and convenient. So, I'm going to make a sincere attempt to get there at least three days a week after work. Of course, the walk from my office to the gym is a work out in and of itself! My goal is to take off some of this prednisone weight (in addition to regaining strength).

Also at my appointment next week I'll have my monthly labs...so, I'm a little anxious to see if my CPK levels have remained normal through the month.

equipment for daily living

I used an over the door pulley such as this to work on range of motion once home. This is only about $25 and there is no weight involved...just your own resistance. It has helped me to keep range of motion in my shoulders, for the most part.
The plastic, non slip things I talked about below! This are great in the kitchen. (as is a teen who can pick up things for you that are too heavy!!)
This is the reacher that I most liked. I used several different kinds. This one held up the best of them all.

This is the dressing stick that I've used. Used not only for dressing, but also for getting things in and out of the washer and dryer.



RehabMart has much of the equipment needed: http://www.rehabmart.com/all-categories.asp