Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
I'm wondering, when this is all over and you're feeling better, what do you want to do?
I know we are all at different levels of illness and recovery. Some of us might be in remission, some of us may be newly diagnosed, some of us may be years into this without relief (*ahem* me!)... but I've been compiling a list of things I want to accomplish when I do finally catch a break (hopefully a long, if not permanent, break).
#1: Run. I have never been a runner, but that's because I didn't know what it felt like to not be able to run. So when I get better, I'm going to get into running shape, and I'm going to stay there.
#2: Hike. I live in Appalachia. Enough said.
#3: Learn to kayak. Why not?
...I have a lot more, but the general idea I am sharing is that it helps me sometimes to picture the end goal. Hope everyone is doing well :)
I know we are all at different levels of illness and recovery. Some of us might be in remission, some of us may be newly diagnosed, some of us may be years into this without relief (*ahem* me!)... but I've been compiling a list of things I want to accomplish when I do finally catch a break (hopefully a long, if not permanent, break).
#1: Run. I have never been a runner, but that's because I didn't know what it felt like to not be able to run. So when I get better, I'm going to get into running shape, and I'm going to stay there.
#2: Hike. I live in Appalachia. Enough said.
#3: Learn to kayak. Why not?
...I have a lot more, but the general idea I am sharing is that it helps me sometimes to picture the end goal. Hope everyone is doing well :)
For the most part, I can comfortably run about 2 1/2 miles on any given day on the treadmill. The asphalt and sidewalks really beat up my body. I'm what I call a running snob! LOL!
I would like to ride in a bike race. I've been taking spin classes for about three months now and I'm conditioned pretty well. I'd like to see how I do...not even time wise...just be able to cross the finish line.
My only real goal isn't physical at all. I want to be a better person because of and in spite of the illness. I want to be the best mom and wife and me that I can be. I want to enjoy every minute of my life with my family. That's my goal.
(I am doing pretty well now besides my knees, occasional headaches, and loss of appetite. I still have better and bad days like everyone else. I'm EXTREMELY grateful that I have come a very long way back in such a short amout of time.)
#1 run in a 5k. I ran track and cross country before DM and I love running, it makes me feel better and think clearer...It really sucks that I can't now. In return I can lose these extra 40 lbs I have picked up :)
#2 Do tons of fun stuff with my daughter that I couldn't over this past year! I have been sneaking and riding bikes a lil bit but don't wanna over do it.
#3 take longer trips, go camping, and maybe even a cruise!
#4 drink the biggest/strongest margarita I can find! lol
#5 no setbacks!!
they are not in any certain order but those are a few of my goals :)
I pray that all of our goals are in reach...and soon!
have a great day everyone!
1) I would like to skip. I miss skipping and jumping water puddles
2) Run. And Run run run.
3) Carry a baby in my arms
4) Clean my top cabinets (I can't use a step stool)
5) Walk while reading something or looking around (distracted walking)
6) Play in the ocean
7) Lay in a hammock
8) Take a hot bath
9) Garden with great passion
Those are the things I really miss right now. I do try to do almost everything I used to do but it is in a modified way. I don't like it and it is frustrating.
1. I want to travel cross country by train
2. To dance everyday
3. To plant flowers and fruit in my yard
4. To redecorate my home
5. To walk through a outside market without getting tired
6. To get out of bed without pain.
Most other things that I have planned, I am going to do regardless of this illness...
Looking forward to the future is what keeps me going each day.
One thing about this disease that surprised me is how things slip away and you don't even notice it until you try and can't anymore. I never realized I would wake up handicapped. I thought it would take an accident to do that in the middle of my life. Such a big surprise.
Be able to browse Walmart and not need the electric scooter.
I would have to say to be able to walk a mile!! I am so thankful I am alive and kicking!!! I also would like to volunteer to help people thru difficult illnesses.
Love hugs and prayers
1. Play my trumpet more on performances.
2. Compose some music and have it performed.
3. Write a few children's books. (How-to books & fiction.)
4. Work on my math skills & get a second certification to teach math or microbiology. (I could tutor if my disease get worse.)
5. Get a second degree in bible.
6. Paint some nice paintings and sell them.
7. Make and sell some stained glass art.
Ok. You have stirred my interest and I need to get busy. We can not allow our diseases to get in the way. Thank you for pushing me forward!
1)Complete a bed size quilt worth of the Paducah quilt show and enter it.
2) Fight again at Gulf Wars (I use to be a medieval reenactment heavy fight for the SCA)
3) Have a large garden
4) Hot bath with bubbles
5) Meet all the wonderful friend I have made on this site.
I would like to:
1-Run everyday and play tennis 3 times a week like I used to ...
2- Take my PhD in philosophy (when the headaches will finally stop:-)
3- Shoot my feature film which a road movie in sunny morocco (hum that one is going to be a challenge as I have developped a strong sun intolerance...)
-Laugh, laugh and laugh because I'm finally pain free...
Ah it's good to still have dreams with all this...