Wednesday, September 25, 2013
This disease is seriously driving me bonkers! It can go from feeling great to the greatest pain in the world. The last few months have been tough! I was allowed to try Methotrexate which when added to my infusions has been known to help immensely, however, my body betrayed me again. After taking it one time my Liver enzymes jump to tens times the normal. So.... Was quickly taken off.
About two weeks after my infusion the pain started. It was severe. Some nights I would cry all night. Some days I could not walk. My fingers were not working, I couldn't straighten them or grip things. I was quickly becoming less independent and had to teach my ten year old how to pull my hair in a ponytail. Laundry piled up and then I lost someone close to me from cancer. The stress only made it worse. I was due in for an infusion and explained about my pain. They increased my dose and have me some IV steroids. I felt great. For exactly two weeks I could do things and not worry about how it was going to effect me later.
Why must it toy with us so? Why does my body attack it self with force?? First my fingers and wrists. Next knives were attacking my shoulders and knees, and finally my ankles. The pain is like nothing I have felt. It is much worse than normal. I can dope myself up and make it through a few hours a day but pay for it later. After the funeral I literally could not move anything. In tears all night I was ready to go to the ER. The only reason I didn't was I didn't want to wake the kids up. I couldn't stand, couldn't roll, just laid there on my back stuck. It was horrible.
My heart was breaking when my 3 year old ran to his dad and said "mom doesn't like me, she won't give me a hug" oh baby how I want to. We have explained my disease but it is not easily understood to a ten year old much less my three year old. At least once a day I have to tell him, baby I cannot pick you up right now I am hurting. Somedays he goes with it someways it bothers him and we cry together.
The pain is extreme. It is breaking me currently and need to figure out how to overcome. How to stop my body from betraying me. I want my life back. And I want it back for more than two weeks.