Gee, You Don't Look Sick...

Gee, you don’t look sick… I hear it a lot. What does sick look like anyway? I am supposed to be underweight, and pale? I am not. Am I supposed to have thinning hair and leathery skin? I don’t. I look like your average soccer mom. I have thick long hair a fair complexion and I need to lose about 50 pounds. No, I guess I don’t LOOK sick, but I am.

I have fibromyalgia, diagnosed in 1991, and End Stage Renal Disease, diagnosed in 2001. I went on hemo-dialysis at that time. I had a kidney transplant in 2005 and it failed in 2008. I returned to hemo-dialysis, this time nocturnal schedule. I have unstable blood pressure, vertigo and asthma. Because of my fibromyalgia, I walk with a limp and experience extreme pain in many of my joints on an inconsistent basis; I have a sleep disorder, irritable bowel syndrome, frequent headaches, TMJ, and deep nerve pain, especially during dialysis. Standing, sitting or any position hurts if held for any length of time. If I stand more than a few minutes, I get very dizzy as my blood pressure drops very low. Sitting hurts my back and hips; walking hurts my knees, back and hips. I spend many of my days in bed, because of pain and extreme fatigue.
I am sure that others probably think I am lazy, milking my condition, but they have not had to walk a mile in my shoes. A friend shared an article with me once, where a woman used spoons to explain her condition to her friend. It became known as the spoon theory. I believe it is a wonderful explanation. The Spoon Theory

Ken and I started this blog to share our experiences as professional patients. We want to share our frustrations, our laughable moments and our hardships. We welcome others to share their stories as well.