Remember when I said that the right Dr. will make all the difference in the world? It does. We found another Dr. (Neurologist) and hospital (University of Washington) and things started to happen. I really feel that this was a huge turning point in my life and my Dermatomyositis disease. For once I felt like a person and not just another number. They really cared about me and making me better. We found this new Dr. and hospital through MDA.
This is VERY IMPORTANT if you have Dermatomyositis or a myositis type disease. The disease you have is under the MDA umbrella. Where ever you live, you have a local chapter in your area. Get ahold of your chapter, and tell them what you have. There is funding available, and support.
When we called our Seattle chapter a representative came to meet us. She gave us phone numbers, a wheelchair, a elevated toilet seat (I could finally get off the toilet now), and crutches to walk with. They also had connections with support groups, and when they were meeting. They were a God send! Thank you MDA!
3/2/2005 - First meeting with new Dr. Learn a lot about Dermatomyositis. Upped my Predisone to 100 mgs.
3/3/2005 - Had EMG test. Not a fun test, but it tells a lot about your muscle function. They stick a needle in your muscles, then tell you to flex your muscles, then they move the dumb thing around. Ouch! Also had a CT scan of my chest to see how my heart was.
3/4/2005 - Had lost ability to walk. I had to be pushed around in a wheelchair. I HATED IT!!
3/5/2005 - Could not wear shoes as the edema was so bad in my feet.
3/6/2005 - We were on our way to church, and I tripped and fell to the ground. I had a fear of falling, you see when I fall, I could not get myself up or turn myself over, I was dead weight. So when I fell, Kim and Tyler my son had to drag my lifeless body to the edge of our stairs, put my feet over the stairs, and push my torso up so I was in a sitting position, from here they could get me to stand. This was very scary for all of us.
3/7/2005 - Results from CT scan - Thickening around my heart, needed to get an electrocardiogram for my heart.
3/8/2005 - Test was OK. My heart was fine. Thank you Jesus!
3/9/2005 - Have more strength in legs - Predisone is doing it's job.
3/14/2005 - Bad weekend. Very depressed.
3/16/2005 - Kim and I started to stretch my muscles. With the lack of movement my muscles they were losing the flexability.
3/18/2005 - Physical therapy. I had to re-learn how to do some basics. Putting on socks, underwear, and getting out of bed. These seem like simple things, but I could no longer do them, and they did have little secrets to help you.
3/22/2005 - Had ear tube put into left ear. Due to the lack of swallowing, I developed water in my inner ear.
3/28/2005 - Had another muscle biospy in my right bicep. Again it came up negative. :(
As you can see a lot started to happen. The right Dr. can and does make things happen. Thank you Dr. D!
Another suggestion. Sitting at home was very depressing. I would sit and watch TV, and TV would show me all the things I was not. I saw people running, I could not. I saw people eating, I could not, everything that I watched depressed me. Especially that commercial for the powered wheelchair. It was like the enemy was saying..... this is going to be YOU.
Find something to keep you productive. Read, study, play video games, Internet, blogging, anything to keep you mind off the disease.
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