Hello. My name is Amy Barrett. I was diagnosed with aosd in the summer of 1992. We had just returned from an extremely stressful few months in Florida and within 6 days I was in the hospital.
My illness began with a stiff neck and fever. Over the next few days, I noticed a rash spreading across my body. I was nauseous and extremely thirsty. My joints began to ache horribly and my body ballooned because my kidneys had shut down. By the time I woke up on the sixth day, I could hardly move, but I was so thirsty I drug myself up the stairs because I had to get a glass of water. I dropped the glass as I tried to get a drink, this noise woke my mother up and she found me bent over the sink with tears streaming down my face. I told her I felt like I was dying and needed to go to the hospital. She put me in her bed and we waited about an hour for my husband and father to get home. My father thought I was exagerating until he lifted my fingers off a pillow and tears ran down my face.
I got to the emergency room around 10:00a.m. and had so many doctors around me and so many tests done that it is hard to remember everything. I know they did a spinal tap, a barage of blood tests, took biopsies from my bicep and thigh, did a pelvic and took pictures of the rash.
During my 18 day hospitalization I experienced the following. Recurrent high fevers which spiked at night, my kidneys shut down and I retained over 20 pounds of fluid, my spleen was swollen, my liver went crazy(bilirubin above 14), I had fluid around my lungs and a tear in my esophogus because it had gotten so dry. They put me on massive doses of antibiotics and steroids as well as lasix and restricted my fluid intake. I was on so much morphine for the first week that I only remember glimpses of my family in my room. I was unable to eat because if I swallowed anything it felt like a punch in the chest due to my esophogeal tear. I spent my 22nd birthday in the hospital. My mom, grandma, and aunt brought my kids(3and1) to see me in the waiting room for 15 minutes.
I began to get better after about two weeks. That is about the time a Rheumatology Resident told me they thought I had aosd. I went home 50 pounds lighter and still suffering from joint pain. I went to the Rheumatology clinic once a week for about two and a half months after that. During that time my hair began to fall out. I lost 3/4 of it before I just went ahead and shaved the rest and got a wig. They said it was from the high fevers and antibiotics.
After several months all symptoms were gone except for very rare mild joint pain. That is until last march. I started getting fatigued easily and could not walk very far without severe back and hip pain. My symptoms usually last for several weeks and then go away for saeveral more. My latest flare has lasted about two weeks so far.
I get scared sometimes. For several days I've had a sore throat, intermitent fever, a rash that went away,but I'm still itching and joint and muscular pain. When I woke up yesterday my hands and feet were swollen and they were worse today. I can't get my rings off or my usual shoes on. My husband doesn't understand why I let it upset me, but I can't help it. I'm afraid of another full-blown flare up. We don't have insurance right now so I'm faced with going and applying for a medical card. Keep me in your prayers.
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