Wednesday, October 17, 2012

Feeling Stronger

I skipped my weekly chemo last week. After too much physical pain from the medication and not enough help, I took a step back. During the week myasthenia gravis rebounded. I expected that. By Monday afternoon my shoulders were so weak using an iPad was challenging. If I want to play the cello, I need strong arm muscles. MG is currently attacking my arms more than my legs. For about a decade it was the other way around. I had stronger arms than legs. For a while I could walk a ten step radius from the nearest chair. That was as far as I could move before I was liberated by a powerchair. Yes, liberated. Not confined.

Confined to a wheelchair makes absolutely no sense. Get up and take 10 steps away from your chair. That's as far as you are allowed to walk today. Do you feel confined? Trapped? I did. That is as far as I could walk for months. The misery I felt goes beyond tears. Only music can speak it. I was trapped in my house. My powerchair freed me from being on house arrest. For 10 years I used a powerchair until one morning MG moved from my legs to my arms. Why the move, I have no idea. It just stopped attacking my leg muscles and moved away.

With MG primarily in my shoulders walking is easier. Braiding my hair is harder. Standing to brush my teeth is possible. Playing the cello is tough. I would like to live in a world where I can walk and braid my hair, stand up to brush my teeth and play my cello. I don't know if that world is possible. I do know that skipping chemo last week allowed me some inner peace for a bit. Skipping chemo sick for a week was a relief. MG antibodies rebounded, so I got weaker. But, I think it gave yesterday's chemo pills antibodies to seek and destroy. Other than attacking me, the medication attacked diseased white blood cells.

I felt tired. I felt dizzy. I felt really nauseated. However, the full body pain wasn't there, so chemo wasn't too bad. What a relief that was. I followed diabetes sick day rules and drank Coke for breakfast. It helped and didn't spike me at all. For some reason, my Coke and insulin cocktail never spikes my blood sugar on chemo day. Maybe MG and diabetes have a chemo day truce? Or maybe insulin works really well on pure sugar without fat to slow it down. I spent the day resting and now I feel much stronger. I can use my arms and my legs today. That is no small thing. Today is a rare day.

My health is fragile, like this orchid.

Photo Credit: Steven Smith


Fragile things need to be looked after carefully. Taking a week off from chemo gave me a chance to breathe and rest. I am back on track with the medicine and more in balance with my life. I can't heal MG or diabetes, but I can take the time to heal my spirit. I am glad I did. I feel rested and ready to meet whatever comes my way.

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I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

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