Here it is 3:40 am and I am still wide awake. These steroids are so weird. I have never had a problem sleeping 8 hours, I’ve never had a sleep problem. But since I have started on these steroids, I don’t sleep. I have absolutely no desire for sleep. Every night, middle of the night, my eyes pop open…
I arrived at the oncologists office at 9am as scheduled. I was cheerful and confident that the CT Scan was showing lymph nodes NOT cancer. Which is not the most popular attitude to have in a large cancer office, but I was making sure that I did not give the impression that I was scared. …
I went for a check up today. To see how the steroids are doing. They are doing great, except for the sleeplessness. Finally, finally I am getting a little appetite back, althoug I am still eating only a handful of food a day. For instance, breakfast is one slice of a pear and a cup…
OH Lord please, please help me. The steroids kept me awake all night. I hallucinated that there were kites flying in the bedroom. I hallucinated that there was a hot air balloon waiting for me outside on the balcony. I am glad I did not jump, I live on the 6th floor. Oh please dear lord…
I arrived at the office. I feared being late and being turned away like that horrible day on December 5th. I almost started to cry when I could the doctors office. I need this appointment so badly, I kept saying to myself as I drove. I started to panic when I saw I only had…
I can’t go on like this. The pain, fevers, the rash, my neck gland swollen, my bones aching, my muscles in screaming pain. Please god, I need this appointment to find out really what I have. I think I know, I have done hundreds and hundreds of hours of research on the internet. I match…
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…
It’s been a difficult past 4 days. I barely sleep. I cough constantly. This spasm cough is terrible. Last night was one of the worst nights in 4 days. I bolted upright holding my right shoulder, crying. Getting back to laying position is harder than sitting up, because the arm has to move. So painful. …
I have been searching the Internet for my diagnosis. I think I found the exact match. The more I read about it, the more it matches. It seems to match everything I have been going through. It says that most initial onsets of the Adult Stills Disease begin with a high spiking fevers, one major organ…
I got a call from my doctor’s nurse. She asked if I could come in to look at lab results. I was eager to find out. He told me that my SED rate was elevated, my white blood cell count was markedly high. I asked him about Lupus, Rheumatoid arthritis, and any other disease he…
Read more Meet with MD about lab tests, possibility Still's Disease?
Adult Onset Stills Disease 