A Day in the Life: Living with a Rare, Genetic, or Undiagnosed Condition

My cousin angel melissa😢❤ Rest in piece my beautiful girl ..so shining personality so kind so beautiful inside outside ... You fly to the light to heaven near to our beloved relatives ..no pain no suffering any more.. We love you we miss you so much 😢😢you are our angel 😇

I've lived with Still's Disease, which is quite rare, for most of my life, the doctors believe. They think I had it as a child and carried it over into adulthood, due to the extreme trauma associated with an abusive situation which only ended a few years ago, with the death of my abuser. Additionally, I have been diagnosed with Fibromyalgia since 1999, which adds a whole other layer of problems to the Still's diagnosis. I've had fifteen heart attacks and have at least fifteenth stents in and around my heart. I've had two open heart surgeries, one resulting in a quadruple bypass and the second being a revision of the earlier surgery, to refine some bypasses and revise a stent which had failed. I am told there is no chance of having another. My heart will simply die, the surgeons say. My liver has completely shut down twice and I was given up for dead, being told by doctors at Vanderbilt Hospital that I wouldn't live long enough to be worked through the process of registration for a liver transplant. I've endured a bout of hemorrhagic fever, gallbladder death and pancreatic shutdown, resulting in my becoming diabetic. I developed cervical and vaginal cancer and underwent a radical hysterectomy, but did not have to endure radiation or chemotherapy. I have been declared dead twice, though I have died or nearly died many more times. I have been to Heaven at least twice, but probably more. My world is filled with unceasing pain and drugs which just take the edge off it, while rendering me unable to work or do most tasks other people can. My days are usually spent sleeping or curled up somewhere in hopes that the pain will back off. That's the part I hate the worst. I hate the drugs and the way they and the pain control my life. I honestly don't remember how it feels to be pain-free, to be normal. All in all, my life has been one long round of doctor visits, ER visits, hospitalizations and surgeries. That's the bad news. The good news is that I am alive and that God has a good plan for my life! I know, at the end of my life, Heaven is waiting and until then, I am happy, surrounded by people who love me. I can walk and talk and I'm not in a wheelchair (right now) or confined to bed. My life is spent in a garden planted just for me, filled with bluebirds and flowers by the thousands. My life may be a struggle, but I can do all things through Christ, which strengthens me. He keeps me strong and He gives me courage and comfort. I believe that I am going to be the first person healed of Still's Disease and that I will run out of this dark valley of the shadow of death with joy! I cannot be defeated because I refuse to quit! Jesus died to give me the victory to overcome death! Praise the LORD!