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.
Friday, December 23, 2011
Saturday, November 19, 2011
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.
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.
Thursday, November 10, 2011
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.
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.
Friday, October 7, 2011
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.
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.
Friday, September 2, 2011
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.
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.
Friday, August 12, 2011
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.
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.
Friday, August 5, 2011
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.
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.
Monday, July 4, 2011
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 loss of muscle strength that I've noticed though. That's a good thing.
Wednesday, June 22, 2011
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.
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.
Sunday, June 12, 2011
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.
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.
Saturday, June 4, 2011
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.
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.
Sunday, May 29, 2011
Tuesday, May 17, 2011
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.
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.
Friday, May 13, 2011
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.
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.
Tuesday, April 19, 2011
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 :)
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 :)
Friday, April 15, 2011
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.
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.
Thursday, April 14, 2011
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.
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.
Saturday, April 9, 2011
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.
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.
Sunday, March 27, 2011
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.
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.
Saturday, March 26, 2011
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.
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.
Saturday, March 19, 2011
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.
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.
Saturday, March 5, 2011
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!
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!
Wednesday, February 23, 2011
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?
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?
Saturday, February 19, 2011
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?
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?
Monday, January 24, 2011
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!
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!
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