Sometime having an autoimmune disease breaks my heart and tries to darken my belief in all things good. Lately I find myself feeling paralyzed by my thoughts and heartbreak. It sits so heavy on my chest at times I struggle to catch my breath. I am reminded everyday that my life is different. Some days I wake up and step one of the day is difficult to make. Other days I am reminded when I have to take massive amounts of medicine. I am reminded that I am walking on a tight rope trying to balance a normal life with my family and actually fighting for my life every moment of ever day. One slip and everything can change in a single moment.
I want you to know I do not feel sorry for myself. I have bad days and I cry to my mama at times but I am strong and after the tears flow I pick myself up and keep pushing through. My family worries enough I don't want them to have to worry more than they already do. Yes, this is me being stubborn sometimes but at the same time it is helping me keep a small amount of my self worth. Over the last six months we have had to make some very hard choices in life. I filed for short term disability and because of that I was sent a letter termination. I have been poked and prodded so much over the last six months that the bruising from needles and iv's would get so bad that I looked as if I was a drug user. You can see where self worth at this point is so important to me. I do not want to be a patient to my loved ones. I do not want people to feel as if they are my caretakers because as soon as I see that I see myself in their eyes as someone who is sick. I see heart break in their eyes and the pain they suffer also suffer from throughout the life of my disease. They didn't choose this and neither did I. How do you be "normal" in a situation like this? When does the heartbreak end? When do I feel better? When do my family members stop worrying?
I know that no one can answer my questions. I know that sometimes I will be a patient and there will be times my loved ones will be my caretakers. I just want a small amount of normalcy squeezed into this world of disease I live in. At times I feel as if I am in this dark tunnel just felling around for something to grab on to and most of the time not finding it. I see the light at the end of the tunnel but the closer I think I am getting the smaller the light gets. In my mind I stomp my feet and I scream! I am a 33 year old adult who will stomp her feet! Then I stop and remember that there is a reason for all of this. As I have mentioned before there is a reason I suffer and maybe some day my suffering will lead to a cure for my diseases. Maybe someone else will not have to wake up in pain. Maybe someone who would have suffered forever can lead a normal life.
So, I pick myself up and look around and in the dark tunnel I feel for the tight rope I fell of off. I slowly crawl back up. I close my eyes and focus on balancing and take one step after another because I know with each step I take the closer we come to finding new treatments and even cures that will help those suffering. I feel that alone is worth balancing for.
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