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.
It’s 3am. I can’t sleep even though I took the Nyquil. This is becasue I am in terrible pain and have been up crying. I woke up with my knees throbbing and swollen. My husband is so caring and loving when I wake him up due to my pain. He has never, ever, ever been…
Well, I thought I was doing pretty well drinking chamomile tea before bedtime. It worked the other night. I slept 8 hours straight. But last night……it did not work at all. I drank my tea, felt sleepy at 9:30 and went to bed. At 12:30…….BING!! my eyes pop open, and I am wide awake. Super…
Man! Do I feel great!! These steroids are strong stuff for being such little pills, but they do the trick! I can honestly say that I have a new view on life. I am so much happier than before. Although I have always been a happy person, I just feel more thankful everyday that I…
Wow!! Now that I have regulated and understand the peaks of the steroids, I can tailor them so that I take them at hours that allow me to sleep. I have found that if I take the first set of steroids at 9am and take the 2nd set of steroids at 9pm, I can sleep.…
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…
Adult Onset Stills Disease 