In order to understand how Prednisone changes a person’s life, you need to know what physical activities their life consisted of before. What was modified and how have things changed?
Before Polymyositis, I attended a high impact step aerobics class twice a week. I took pride in my ability to keep up the intensity throughout the entire 45 minutes. When I got tired, I would push myself to the limit and give an extra jump here and there. When I think back, I am so happy I did that. My step instructor would tell us to push ourselves because there are people in the world unable to work out. I am glad she pointed that out because now I am one of those people. YOGA was also a big part of my life. I took vinyasa yoga twice a week and Bikram yoga on Saturdays. This exercise made me feel healthy both spiritually and physically.
I was always thin and athletic-looking and I say “looking” because I am the most uncoordinated person. Anyway, I used to do lots of aerobics and exercise because I also loved to eat. My boyfriend and I lived what we thought was “large” and would go out to eat almost every day of the week. We were living the “together-no kids-good jobs” good life. Life was grand.
Before Polymyositis, I considered myself as straight an arrow as they come. No smoking, no drinking, no drugs, not even over the counter stuff. When I had a headache, I would let my body power through it on its own. I hardly ever got sick and as a teacher, that’s hard to do because students are ALWAYS sick. In yoga, the teacher would have us repeat the mantra “I love myself, I love who I am, and I love where I am,” and also, “I thank my body for bringing me to where I am today.” As we did yoga the instructor would tell us not to judge our body and compare it to what it did yesterday, but to be thankful for what it is doing today. I didn’t know how this would echo in my mind months down the road. Life did set me up for this I must say.
Prednisone and Polymyositis
When I heard that the treatment for Polymyositis was prednisone, a steroid drug, I immediately looked up the side effects and was blown away. I was DEVASTATED at how horrible the side effects listed were. I mean, I am thankful for prednisone and that it exists and that it brought my CK level down. I am thankful that it helped me breathe and swallow again. I am thankful that it helped me regain the ability to pick up my baby and hold her. I am thankful that I am still here because of prednisone. But prednisone is a poison. Honeymoon period – OVER.
The day I picked up my prescription at the pharmacy, I remember waiting for my name to appear on the screen. I was shaking. I wanted to cry out loud and scream. I didn’t want to take it. I was so afraid. So scared. The FEAR of side effects making me sicker than I already was So, I devised a plan. I planned to counteract the side effects. Nope, NOT gonna get me! Prednisone will NOT make me fat, will NOT give me high blood pressure, will NOT make me diabetic, and will NOT make me feel sad. NOT ME. . . . . but it got me.
I sometimes wonder if the prednisone makes me sicker than the Polymyositis does.
Six weeks of high dose steroids (60mg) was nice at first. My pain was instantly vanquished and there was a noticeable change in my skin. It was smooth, clear, and looked great. I thought prednisone was a miracle drug and loved it. Then, it happened, slowly, but it happened.
After about 5 weeks, my CK level was under control but my moon face started, the depression settled in, and I was angry all the time and I didn’t feel like myself anymore. I did not recognize myself in the mirror as my face ballooned beyond recognition. Since October 2009 until present, I have gone through a roller-coaster of REPEATED emotional and physical transformations. Increasing and decreasing the dosage over and over again. What has this done to me? I have gained and lost 20 pounds. I have been in and out of depression. I have been in pain most weeks and then not in other weeks. I have been fearful of the future and hopeful still. Worse than the disease is the wait between weeks of getting my blood drawn; hoping that my numbers will be within the normal range, and when they are not, I am fearful of what the side effects will be of increasing or changing meds.
The yo-yo effect of uncertainty is horrible because there is no “paved in stone” method of maintaining “remission” with Polymyositis so it is difficult to see it coming or identify it once you’ve reached it. My spirits sometimes are high but when I get blood work back with negative results, I cry every time. I try not to, but I can’t help myself. I wish with all of my heart that this wasn’t happening. I wish I were well.
I know there is no cure for Polymyositis so when I pray, I pray for time. Time to be with my family and friends. Time to experience life with my daughter. She is a wonderful being. MY little being and I want to see her grow. . . . Please God give me time.