About Me: Female, 56, Wooster, OH, member since Apr 2009
I have been married for almost 34 years to a wonderful man. We met in high school and were told by so many people we were so mismatched there was no way we would last. We dated my last 2 years in high school and then got married and here we are. So actually together 36
[More] yrs. Aah! We have 2 adult kids who are both married, a son and a daughter, they each are married and now have families of their own. Our 5 beautiful grandchildren are the highlight of our life.
I was diagnosed with an incurable mitochondrial disorder in 2000. I have been on different meds and vitamin regimens to help with the symptoms. This effects the muscles in your body, by not letting the energy from the food you eat and air you breath in get to the muscles and nervous system to make them function correctly. Stress is a big factor in the downfall of this disease and my job was very stressful. Ithe muscles that use the most energy are effected first, brain, nervous system, skelatal muscles, hearing and sight, lungs. My husband takes care of me on days when I can not move on my own, he takes care of the house when he is not at his job.
I am now off work on disability since about a year ago. It took about 7 months for my body and mind to recover after getting away from working before I could actually enjoy the grandchildren and my family like I have dreamed about for the last few years. I still have to take it easy and not overdo it, but hearing the children run in the door and love to come over here to see Grandma and Grandpa is something I have dreamed of since I was a young girl.
Just a quick note to say hi Joyful! You are an inspiration to me!! Tough-minded! A survivor!! Sorry you're having a bad time now and that you aren't getting much sleep. Does something happen when you sleep that makes you afraid to sleep? I recently had my muscle biopsy and was miserable, throwing up afterward, unable to eat or drink for a couple of days, likely from the pain med. Now feel better. Hope to get an answer from the muscle biopsy - as in it's positive for IBM or something. I need to know what is attacking my body. Then I could have more peace of mind. Sounds odd, eh? The surgeon was groping around for thigh muscle before the surgery - he said I don't have that much muscle left there. What - am I going to have to become a visible skeleton before I get any answers??
Just a quick note to say hi! I read your profile about your struggles with Mitochondrial disease. I'm so sorry to hear that it isn't really treatable in an effective way. You are a survivor--I''m glad that you are here!
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