Thank you to everyone who has been sharing my story. The past year has been quite difficult on my family and I and to have the support of all you kind people. My last blog was just a small look into my life with JM. The following blogs will describe further into my everyday life with JM. The ups the downs and the explainable.
The days after I returned from the hospital seemed to go by very slow. I was still in so much pain from the muscle cramps and no to mention the 3 inch cut in my leg from the muscle biopsy. I couldn't sit up in my bed, go to the rest room, or even feed myself without assistance. Being a very independent and stubborn 17 year old this made the days miserable. I went from walking around and singing in my district honor choir 3 weeks earlier to being stuck in my bed almost 24/7. THANK GOD for my Mimi, Karen, who took care of me while my mom had to work.
My grandmother is like superwoman and without her I think I might have just gone insane sitting in that room all by myself. She would lift me out of my bed and assist me to the potty chair that we had to put in my room because I was not able to go to the other one. She would also bathe me and attempt to brush my hair. I say attempt because there was a knot the size of a softball in my hair because I had laid on it for so long. Anyways the point is that I am so thankful for my grandma.
The month after I got back from the hospital and the doctors were going back and forth trying to figure out what I had was very rough on me. I just wanted to know what was wrong with me. Why couldn't anyone tell me that? Why couldn't I get a straight answer? There where a million questions that I had running through my head. The worst part was the withdrawal. You see when I was in the hospital and the couple days after I had returned from the hospital I was on very high doses of prednisone which is a steroid used in the treatment of JM. When the doctors called me and told me to stop all medicines my body went through withdrawals. I was miserable. Shakes, cold sweats, insomnia you name it I had it. It was crazy. Good thing I had my other superhero, my mom, by my side each and every night to help me through it.
When I was this sick I felt like I must have done something wrong to have this happen to me. Like I could have done something different in my life so that I wouldn't have been punished by God. It took me a while with lots of prayer to understand that this disease is not a punishment, it is a purpose. Having JM has given me and is still giving me the opportunity every day to help someone. It has taught me to love, give, and never take for granted the small things and the people in our lives.
I can not wait to share my life with you all. My life may not be that interesting but I know that with each person that reads this blog we come one step closer to finding a cure for JM.
God Bless,
Callie
To find more info please visit www.curejm.org
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