Illness Persists Coming Home 9/29/08
It took me weeks to get my strength back, from Sept 19th – Sept 30th. I left my parents home after 2 weeks of recuperating there. My strength was so poor. While at my mother’s I could do nothing for myself. I was so weak. I had virtually no appetite. I could only eat half an egg and a slice of apple. I had fevers around the clock still up to 101, but not to 103 as in the hospital. I had a tremendous rash all over my back, torso and buttocks. Part of the light red rash were flat spots, non-itching, the other rash on my buttocks was like a raspberry, bumpy, extremely itchy.
There were clearly 2 different rashes going on. I didn’t know this at the time. I just figured one part of my body was worse than the other. My mother is an angel. She looked after me like I was a baby bird. I was so sick. I could not even have the strength to shower, my mother helped me with all tasks.
Eventually the fevers calmed to hover around 100 degrees, they seemed to return each day. My right knee was extremely sore, so sore that when I was sitting, I could not straighten it to stand. It was very red on the knee-cap, and I could feel a strong SNAP of something catching on something. The pain brings tears to my eyes.
I need 3 hour naps to get through the days. Fevers, muscle aches, painful glands in my throat, and red spots persist. My fatigue level doesn’t change much. I get tired so easily. When can I go grocery shopping without getting tired? I always need to come home and rest for an hour and then make dinner.
But, I am getting stronger, my endurance is slowly picking up. I figured I would kick this illness in the butt and go back to my beloved career, and never have this illness again by Septtember’s end.
Yeah right. What was I thinking? I will probbably be fine by mid-October for sure.
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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.
Latest news here…since I post the last time on this thread, I have recently started on Ilaris. My first injection was on February 20, 2014. My rheumy added this drug ( not FDA approved yet, as you are probably already aware of this, to treat AOSD yet) to my treatment plan. I am also on Actemra Every four weeks as well. Was having flares pretty much every day. If not every day, at LEAST every other day. I believe this new line of treatment is working as not much else in my life has changed. My joints feel great. No fever…praise God! I can actually wear rings on my fingers other than my wedding band that would not budge. Feeling very blessed and hopeful right now. I have to tell you that your blog had been a life saver for me. I have been at the jumping off place with this disease( as only people with the dragon can relate) and if it were not for this blog, I really don’t know what I would have done. I am forever indebted to you for your loyalty to this blog. It really has been a life saver for me. Thank you, from the bottom of my heart!
Dear Alice, I am so very very happy that you are feeling better!! I jump for joy with your progress!! I am so happy the meds are working for you!! To be pain free is a blessing! You are right, nobody could ever relate of the torture we endure when we flare form this disease. I know that each one of us flares, a bit differently, but excruciating pain nonetheless. When I flare, for some reason my lymph nodes swell so huge, and I vomit a lot. But I have heard that other AOSD sufferer do not do this. You letter has made my day knowing that you are painfree :-). Thank you for your lovely thoughts expressed about this blog. If we can all help each other, just feel that somebody else knows what we are going through to the detail of this bizarre disease then all of those hours, years ago when I started this blog, when I was so extremely sick and barley had the energy to type has fulfilled this journey. Thank you Alice for being there. We all gain strength from each other. Stay healthy my friend.