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.

IVIg update

6 months! Wow. I'm not sure that I really believed that I'd make it to 6 months of normal lab work.

I think I'm still slowly regaining strength. Dr. Lowery thinks that since the strength gain is coming with the decrease of prednisone it is more evidence that I had steroid myopathy.

I still need to work on building up muscle and strength of core muscles as my posture is still off, which causes pain...and my gait is off, also causes pain...but it is all getting better.

Pain Med Free

I've not taken pain meds since around Feb 25. Not totally pain free, but it is tolerable. My right hip, where I had the steroid injection, has actually been mostly pain free. The hip itself is fine, the muscles in my thighs have been throbbing if I walk too much or something, but I'm hoping that will improve over time. I am having periods of time of no pain...quite nice :) Wish it was more often, but I'll take what I get!

Decreased my prednisone again. Probably why I'm feeling so fatigued right now. I'm going to try and just work through it instead of going back up for another week. I'm hoping the fatigue passes.

Strength seems to be still slowly increasing. Doctor says to work on range of motion in my arms as I seem to have lost some of that. Still can't lift legs on my own...I mean, I can walk, but to lift them onto the couch, or to lift it high enough to step into the van...well, I have to use my hands to lift it up. I guess you use different muscles to move different ways. I was mopping the floor the other day and flashed back to trying to do that just a year ago...pushing the mop was impossible for me! I still don't like to mop, but I'm glad that I have the ability to do so right now!

Pain Relief - some

Had the guided steroid injection into the hip joint yesterday. That wasn't near as bad as I was anticipating! I did get sick to my stomach...but it was all nerves! I would say that the entire process was similar to having a tooth pulled (the feeling of what was going on, if that makes sense), only a lot less time involved (the process took about 3 minutes).

Anyway, yesterday I couldn't decide if I was "pain free" or if it was still the numbing agent. Last night I didn't have any pain in that hip during the night (wish I could say that for the other hip and my lower back!). This morning I was able to get out of the bed and took my first steps with out agonizing pain in that hip! How absolutely cool! I keep touching that area to make sure it's real and not just the numbing agent still at work (ha, not that it would be today). I think I'd forgotten what pain free is really like. What it has done, though, is made me realize how my other muscles are aching...I'd just gotten use to it and they aren't as bad as my hip areas, so I didn't pay attention to them. Now, how long does one of these injections last?

Walk a mile in my shoes

That's the saying, right? I think last week I walked a mile or so in my own shoes for the first time since being diagnosed with Polymyositis. Okay, so it wasn't all at one time, but I've done more walking than normal these last couple of weeks. My body isn't really all that happy with me!

My CPK levels were near normal again. That's 6 months! :) I'm decreasing prednisone again. *jumps up and down* (if only I could ha)

Pain issues continue. So, Dr. L. suggested a "guided steroid injection into the hip" area. I was all for it. I mean, it's a steroid shot, how bad can that be, right? Well, then she started explaining it to me and showing me how long the needle is! Oh my! Um, I'm not so sure about this. It does have to be done in the hospital (outpatient) and she said that "usually" they give you something to put you out, but at a minimum they'll numb the area. Even if it's numb, you'll still feel it. I'm not sure if I'm looking forward to this now. Which pain do I want less?

5 months "Normal"

Went in for my monthly IVIg and had my blood work done. My CPK was close to normal again. That's 5 months in a row. I know it isn't normal, but it is just soooo close I'm counting it as normal! I'm still tapering my prednisone. Each decrease makes me tired! Tired isn't really the right word for it. Extreme fatigue, if you can imagine, but I'm not slowing down this taper! I want off of the prednisone. As it is, it will be 10 more months before I'm completely off, if everything goes right. Then, again if everything is going right, we will talk about tapering the IVIg infusions.

My strength seems to be holding its own for now. I'm walking a bit more, slightly longer distances. It's amazing how tired you get from just walking. But, I know that will get better. I also have to remember to get up and move at work...if I sit too long doing something, I get so stiff and sore that getting up and moving is hard to do. So, I try to get up and walk down the hall at least every 30ish minutes or so.

Goal for 2011...totally come off the Prednisone! and start the IVIg taper. And, do all this while maintaining control of this disease!