, , Personal Stories
, , Personal Stories
, , Personal Stories
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Thank you Karen Judd and Terre! It has been a long journey almost 10 years now as of 6/23 and one that each day still brings some challenges but this is better then the alternative! To this day I do not understand why there is such a lack of knowledge by so many doctors, this whole disease seems to be running rampant and everyday another is being diagnosed and no one really seems to care that the numbers are climbing! After just watching a commercial on TV this week for Lupus I asked myself why can’t this be done for all forms of Myositis, surely we have enough numbers of folks being hit with this to warrant more focus on this disease, I know everyone keeps saying there are too many causes! But at least get the word out there to show this is going on, all the funds being donated for research and it is like we are standing still! Even the MDA does nothing to bring focus to our disease which is recognized by them as disease #43 ! Bet many with Myositis are not aware that they too are one of Jerry’s (Lewis) kids! If we do nothing else from this experience we need to write everyone we can asking for their help in bring awareness to our battle! Hope you both do well in your recovery ! Thanks for responding to my story, I pass it on to give others hope that there is a light at the end of the tunnel! It just takes each one in a different direction. Fay
Karen, we truly do become our own advocates in our health journeys. I look forward to the day when cures or even glimpses of hopes for medications that will truly slow the progression of myositis conditions. Grateful you have aids to help in your precious care. I appreciate having read your story, just sorry you are having to go thru this.
Fay your story took a lot of hoping and praying. Love that you kept God with you thru it all. Focus is difficult w/such complex and multiple symptoms. Thank you for writing your story.
Thanks for leaving a comment Karen. We urge all to do the same. We are in the same boat and need to encourage and share our stories on how myositis has changed our lives in some way.
Much of this story is mine as well. I, too got pneumonia from methotrexate. They knew I had ILD. So few had seen it, though that they took a few days to figure it out. I had PCP and another pneumonia. As I was drowning on phlegm I also passed. Brought me back. I remember vividly people calling my name and I kept wondering why they were way down the hall speaking so softly. Being called unresponsive scared my husband and daughter as well. Two months later I got home.
We do recover at our own rate. This all happened April 2005. The first few years were recovery and I was doing better. Then I started pneumonias. More damage, ck of 7200 one day. Four years later. Since that day we tried all that is out there. IGG, rituxin, cellcept. Nothing worked except tacrolimus and prednisone. Kinda. Now I have a home nurse and aid twice a week. I spend my days shaking from the tac and tired. Exercise and I get worse very quickly. Oxygen is my friend. Damage keeps spreading through lungs. If I don’t move and sit I am fine on room air. As soon as I start talking or get up, desatting below 90. We all are affected differently. I remain my own advocate. I understand this story well. Karen