Tracey in Maine

I have been having problems with my left side, swelling and making me look crooked, it pinches the nerves in my leg making walking hard and has been happening anytime I do , well, anything. I cant ride a bike, I cant vacuum, I got fired from working 20-30 hours because I was always in pain or swollen and cant walk. My doctor has been doing tests and sending me to all kinds of specialist. He came up with mixed connective tissue disease, put me on Cymbalta for pain which did fix everything else, except my hip problem. He said bursitis, then the specialist said nope. Then I got into the rheumatologist, he said, you do not have mixed connective tissue, you have scoliosis and I think bursitis as well. My dermatologist read through my file and said no mixed as well. SO, I go back to my primary and tell him what everyone else had said. He got mad, Really mad. Asked me, why am I listening to them, they are just blowing me off and don’t actually care about finding out what is wrong with me. Another dr had made a comment on him just wanting to treat the pain and not the problems. I wont take narcotics and have told him. When I told my primary that as well he told me to leave!!! I asked why send me to them if you don’t want me to listen to them? I showed him the lab sheet for a test that the rheum had given me that would prove if I had mixed or not. He said to me that this was not going to work anymore and I just needed to leave???? Now, I have thought about his ego because he showed a big one  many times, maybe being 2nd guessed hurt it? He has been my dr for 5 or 6 years? I am just baffled by it all.

Before I can write a lot of this post series I need to start with some explaining, I am 40 with 2 boys, a step son, a grandson and granddaughter. About 20 years ago I almost died, it was at the point of my mother doing family pictures. (and that was the only time we had professional photos done, if that says anything) Anyway, I started getting tired, really tired. I was training to become assistant manager at a Cumberland farms at the time, working the night shift, doubles and more than 40 hours. The first time I new something was wrong was on Easter, I finished making a big dinner for my boyfriend and I and when it was done I was so tired and not even hungry. As time went on I lost all weight , 90 pounds at 5’5, I could not sit up on my own, my skin was yellow, I had no appetite, I craved salt all the time, I slept all the time, when I stood or even sat, I felt like I had been doing it for hours and had to lay down. My doctors were running around totally clueless. November came, 6-7 months later, I could not stand, they said I was dying and they didn’t know why. They found my thyroid and thought that was the problem, but it only helped a little bit. My hair had got so thin and stopped growing, my eyes were sunk into my head and I thought, “this is it, I am going to die.” My mothers best friend decided enough, she and my mother put me into the back of the caravan and drove me to Portland. I do not remember much as I slept all the time, But I do remember mom wheeled me into the emergency room in a wheel chair and they hooked me up to tons of machines before even asking my mother my name! I remember they tried to get my blood pressure and could not get it and I kept saying I needed salt. They finally figured out I had ADDISONS  DISEASE. An adrenal insufficiency, my adrenal glands which sit on the kidneys weren’t working. John F Kennedy had it. They pumped 100mg of steroids into my IV and with in 15 minutes I was awake, alert and very confused. I take my steroids everyday and am perfectly fine. I go 24 hours with out and I get very sleepy and with in 48 hours I would be in a coma, and have an emergency needle that I have to take if I am throwing up and go to the hospital. I need an emergency alert bracelet, I have to take meds to help regulate the salt in my kidneys , some for thyroid, some for iron, etc. etc. etc. They said no kids, I said to bad!! My immune system is low, and something else is always going wrong. so, now that’s my main information that may be needed for my next post……