I have started this column many times, but I have had trouble putting my emotions into words. I am trying to digest and cope with how my body is slowly failing me, and I don’t know how I feel about it.
If you have been following me, you know that I had a stem cell transplant in January. It was a trial treatment and seemed to put me into complete remission. I was functioning like a “normal” adult for the first time in more than 15 years. I was able to go to the gym, work a full day, and still have the energy to cook a delicious dinner for my husband. I felt like I had been given a second chance at life, and boy, was I going to grab it with both hands!
Over time, I have noticed that my body is not as responsive as it was immediately following my transplant. I need a nap to make it through the day, and I have not set foot in the gym for more than two months. I began to slur my words again, and I have to be careful not to choke on my food during meals — I have already had a few close calls.
I have had to reassess what is important to me. Do I really want that six pack, or do I just want to be able to make it through a day without collapsing in a heap? Do I want to push myself to go to every event and pay for it for up to a week?
I went to see my doctor when things had been going downhill for about a month. We made the decision to begin chemotherapy once again. I am only authorized for three rounds and I have already had two. The side effects of chemo are terrible and I am incapacitated for at least three days after a treatment. But I need that joy of life back.
This relapse has been far more difficult emotionally as I now know what it is like to live a full and healthy life. I know what it is like to do everything possible, and still have energy to entertain friends and family. I am back on antidepressants, and I am coping. I will never give up. Something has to work. Something.
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional med
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