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.
My morning Coffee Doodle today. The steroids are kicking in. Love them/hate them. I am sure you know what I mean. The night time drenching sweats are dwindling and almost gone, the rash has not shown up in 24 hours now. We caught this flare SO early. YEASSS!! Kick that dragon’s butt!!!! — feeling hopeful.
There is NOTHING to like about having AOSD. We feel like we are dying. But if you can catch your flare in time, before you have to go to the hospital and before the frozen joints set in before the screaming out at night due to dragons grip on us, and before the teeth chattering…
Does anybody else start this way ? When you feel your body changing possibly heading towards a flare, and you can’t get warm? Feel freezing and unable to get warm? Right now, trying to avoid a flare after a very traumatic situation that landed me in the hospital overnight with heat exhaustion due to the…
It’s been 6 days since the horse incident. After the event, I slept 14- 17 hours a day. I did force drink fluids, some food then exhausted and back to sleep. I went to see my beloved horse today and my trainer was very cautious and attentive. She rode him 1st and then I did…
Read more Is it the trauma or is it stills trying to break in?
I didn’t feel that well when I woke up that day to begin with, but I went and visited my sweet mini horse in the hot Arizona heat. I’ve only been off my meds for 90 days with the fierce instruction to AVOID ALL STRESS. Easy enough I thought. Not feeling well after seeing my…
Read more When you can’t say no in an emergency situation but it may risk your life.
The last flare ended and I got the OK form the MD on June 14th, 2019 to stop the meds. YAY!!!!! Celebrate!!! I should have written about this then, but I was not sure if I could celebrate quite yet. And then after a month, I just felt fine and kept hoping that if I…
I don’t tolerate the methotrexate pills well at all. They make me nauseous. So I was given the shots to draw up on my own once a week. My last visit revealed my labs were almost normal!! Yippee!! So I began my own taper with the methotrexate injections. Yup. It’s true. I am a dare…
This is not a sad post. It just is what it is. Having a rare disease is like this. Rashes have slowly disappeared , strength is coming back,, I’m getting out more and doing more , carefully. People see a happy, joyful and cheerful person. They have no idea how much energy it takes. A…
I have been procrastinating. It’s a strange feeling of “if I don’t go to the web page, maybe I can post something more cheerful. I am sorry I waited. Things has been awful. But, I’m glad to be alive, so I guess this balances things out. My flare on 1/28/19 was a doozy. What a…
Read more This Too Shall Pass, but the pain is so bad until it does :-(
The flare started on January 28th. It came on so fast it was strange. It was like the dragon said “I’m back! And you better watch out !” I have been on the Medrol for 6 weeks now and the methotrexate injections. It’s working well. I am feeling better. But, foolishly, one day I was…
Adult Onset Stills Disease 