- CASE FILE
I have had 10+ years of worsening medical mystery, escalating to a point that makes daily functions overwhelming. I'd give anything for help
ABOUT THIS CASE FILE
My illness started about 10 years ago. It began with abdominal pain, and excessive bloating and distention. Most of my labs came back normal, except for a high sed rate. X-rays came back okay, except for extremely slow passage through the intestines. This condition continued to get worse, and ultimately I wound up having a scope done. The EGD and colonoscopy came back fine. Within a few months of developing this problem, I wound up in the emergency room three separate times and was diagnosed with an ileus. I was not hospitalized, and received no treatment for that on any of the three occasions. At the end of that episode I was diagnosed with a temporary ischemic colon that they said should resolve on its own in time. When I got pregnant with my third child, this did in fact resolve, and I had a brief respite from my symptoms. However, after the birth of my child the symptoms resumed. I have constant flares of whatever this is I have, and each flare affects a different organ, muscle, or tissue. I have had issues with my skin with breaking out in hives, severe itching, and abscesses that need to be drained. My hair falls out during a flare, my toe nails and toes stay blue, and the fatigue is absolutely debilitating. I have had a flare that affected my neck, that resulted in a trip to the emergency room. Some flares give me horrible migraines, the next flare may affect my left shoulder, the next flare may affect my right hip. Some flares give me debilitating pain in both of my feet. Some involve muscle weakness, joint pain, but all involve debilitating fatigue. I am a nurse in a small hospital, and I have five children. I am able to work through the pain, and the other problems that these episodes may bring on, but the fatigue is absolutely devastating to my life. I cry almost every day. I'm jealous of people for going to the grocery store, or taking their kids back to school shopping. I have to plan in advance for any trip anywhere, because I don't know if I'll have the energy to do it. I have trouble maintaining my house, as well as my self care, and I struggle to work one shift a week at the hospital. my lab results always come back with something mildly abnormal, but no one has been able to put the pieces of the puzzle together to give me any definitive answers. My sed rate has been high for 10 years, sometimes I am anemic, I have a few vitamin deficiencies that I take supplements for,and it is suspected that I have an unidentified autoimmune disease. I feel like I have absolutely no quality of life, and I want to. I want to be able to do with my children, I want to be able to work, and I want to be able to clean my house. I want to be able to have a life where I can take a shower without total exhaustion afterwards. If I try to fight through the exhaustion and do something anyway, then it takes me days to recover. Even if we go on vacation, the stress before and after absolutely devastates my body, and I spend half the vacation in the room. I don't feel like I'm living my life, and I would give anything for some help. I would give anything to have one day that I felt like I could get out of bed and do something, anything.my primary doctor has tossed around the idea of MS, kidney disease, autoimmune diseases, and multiple other things. However my symptoms change so much from one flare to another, that we are not getting any closer to an answer. I am also hindered buy intermittent health coverage, or poor health coverage. This is ruled out some of the more expensive tests, or lab work. This in itself is devastating, because if I could just feel better then I could work more, and get better coverage, or pay for more tests. As stated above, I am a nurse, and I have been through all of the options as to what this could be, and I have run out of avenues for help. I am a happy, funny, active person who is trapped in a body that just cannot do. Something, somewhere, is missing or broken. I just pray and beg for a normal life, or even a normal day in between flares. There just are no words to describe the extent of this illness, ...the constant pain, stiffness, weight gain, and shattering fatigue. The always changing symptoms. As I write this, I feel like there are so many more interesting cases, or people that may need help more. I don't feel like I've done an adequate job of describing this is illness, or my symptoms. I can only hope that my desperation comes through,and I can only beg for your consideration for this project. I justwant to live, instead of simply existing. This project is so amazing for the people that can be helped, it gives people hope for a better life. And for so many of us it is like a light in a pitch black tunnel. Thank you so much for that!