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

Daily Living made easier

Daughter is sick this morning, so we're missing church. I'm having time to sit and think...that is sometimes not a good thin! ha. Anyway, I was thinking about the things that have made it easier over the last few years to get things done...so, maybe this will be useful to someone?

Of course, my electric wheelchair! That wasn't even an option. I know that it wouldn't be affordable for many people, including me. While I was in the rehab hospital, they arranged for me to get this...it was necessary for me to be able to return to work; therefore, it was paid for through a Vocational Rehab grant of some sort. So, check through the Voc Rehab in your area! My wheelchair was equiped with everything that was needed: tilt, a seat that raises, lateral support, arm support things (like these technical terms?), etc.

When I returned home from the hospital a friend gave me an electrical toothbrush and an electrical can opener...lots of energy savers there!

Dressing sticks to pull up pants, etc...can also be used to help get clothes in and out of washer and dryers.

These plastic non-slip discs that I use in the kitchen (well anywhere really) to put things on and it keeps them from sliding around.

Reachers. Very important. I have three or four of them.

Raised toilet seat! (insurance paid for this)

Shower chair, hand held shower (insurance paid for the shower chair)

Walkers...I have a couple of different kinds...I use them depending on what I'm going to do. There is a tray that will fit on the tray that will fit on the walker that comes in very useful that will be very useful in getting things around the house.

A lift chair. A friend gave this to me, so I have no idea how much it cost...but very invaluable as I would have not been able to sit on any furniture...well, I would have been able to sit on it, just not get out of it!

I'm sure there are other things that I'm not thinking of right now...so, I'll add to later! Maybe even add pictures to explain some of my technical terms.

cars, driving, brakes, and Polymyositis!

Well, leaving a friend's house the other night I notices my brakes making this grinding noise. The next morning, still making the noise. So, off to the place where they fix your brakes, take your money, and you hope that they are being honest with you about what is really wrong. So, he says it's just the back brakes. That's a good sign...that's where I heard the grinding noise. Bad thing...he says it's down to the rotors? (hm, did I spell that right?) Anyway, a couple of hours and several hundred dollars later, I'm driving away with new back brakes and a warning to keep an eye on those front brake pads b/c there's about 40% wear on them. I stop at the first traffic light and notice how easy it was to hit the brake! Wow...all that hard pushing lately wasn't actually weakness in my legs...it was just bad brakes! How was I to know? My muscles have been so weak since being diagnosed that driving was difficult at its best in the last several years. I was thinking back...Four or so months after getting out of the rehab hospital I had to go back and be tested/evaluated in order to be released to drive again. They passed me, but I'm not sure what they were using to determine this on...I had no business being behind the wheel of a vehicle! I couldn't even move my legs ...I had to use my hands to lift my leg and move it between the gas pedal and the brake. It has only been recently that I'm not doing that (and sometimes I still have to). It is only by God's grace that I wasn't in or caused an accident. Now, you couldn't have told me that at the time, and if you had tried I think i would have either argued with you or curled up and died...probably the later at the time.

Anyhow, I have good brakes now and my legs/muscles are strong enough that 95% of the time I can move between the gas pedal and the brake without any problem.