I wasn’t doing too well on Monday Dec 1st. My rash was bright red, I had very swollen neck glands, my joints screamed in intense pain when I bent my right knee. I hold my knee tight when I need to flex it as I squeeze my eyes shut to hold back tears. My doctor appt was not until Dec 18th. I just had to keep it together until the 18th. I was not doing very well, in fact I was doing so poorly, I went to my mother’s home in Tucson to get stronger for a few days. No appetite, losing so much weight, but no desire for food. Monday night was one of the most terrible nights I have had since the hospital stay. I wanted to die from the pain and violent shaking my body was doing at night due to high spiking fever of 103. When this happens, it feels like every single muscle in my body goes into a spasm, sometimes I cough so bad I throw up.
But guess what!!!! I got a phone call right before I went to Tucson, the Rheumatologists could see me on Friday the 5th!!!!!! I was so happy!!!!!!!!!!!!!!!!!!!!!
I did fairlywell in Tucson, I guess because there is no stress and I don’t feel guilty. I don’t know were this tremendous feeling of guilt comes from, but I am sure it is what compels me to over-do and over-exhaust myself at home. I can do one task a day. This task is usually cooking somethink light. I need to eat. My husband, bless his heart, tries to cook, but he comes from a very simple background of cooking and doesn’t use any salt, pepper or spices. Bless his heart, I know he tries. he is so good to me. Always by my side, so caring.
I was home getting ready to go to the doctor’s appointment. But, just as soon as I was about to leave my home, a coughing spasm started and then I vomited. Great. I panic when the coughing spasms start, and I ususally cry becasue I hate to throw up. My shirt had some vomit on it so I changed and washed my face, and rushed out the door.
I arrived at the doctor’s ofice minutes late. They told me that the doctor will NOT see me today and that I must re-schedule. I stared at the receptionist, my words unable to get out of my mouth, that I was so sorry. I started to cry, I broke down and sobbed in front of her. I was begging to be seen, my body shaking from the sobbing. The receptionist said, “I’m sorry, this doctor runs on time to the minute“. She told to re-schedule and that his schedule was now appointments in March, 3 months from now. I knew I would have to wait 2-3 months to be seen by any Rheumatologist in this city. I sat in my car and cried. How could I go on with this disease or whatever I have? I can’t even function, every night is is a torture routine from the illness raging in my body. I have lost 11 pounds from my 128 pound frame already, a horrible rash covers every inch of by body, I am so weak I can not do anything but sleep and I am in terrible pain day and night. I wanted to see this doctor so badly. I threw up one more time in their parking lot due to nerves. And then I drove home.
Maybe there is a reason why I didn’t get in today? Maybe he is old and just gives routine medicine? Maybe he would not be sympathetic to my extreme symptoms? Maybe it is a blessing that I didn’t see him today. He is next to Shea Hospital. I am trying to get into a doctor at St. Joseph’s hospital. Perhaps this is where I should be anyway. I do like St. Joes very much.
Please God take this disease away.
I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.