I have not updated the blog for far too long. It is early morning and i have a work day ahead of me. I am healthy and have energy to do this. I love my career. I am an occupational therapist for a large inner city hospital. It is what I was meant to do, it is my calling.
Sometimes, I desire to update this journal, and then a strange apprehension comes over me. It should be the opposite feeling. Everything is going well with the body, no fevers, no rash, no joint pain.
I do well as long as I monitor my fatigue levels, my energy expenditure and my sleep. I am still on my “superstitious dose” of 2.5mg MTX. I will stay on this one small forever, if this is all it takes to keep my mind at ease and the dragon away.
Those with AOSD, may also be on Facebook on the International Stills Foundation Group site or the Stills Disease Is An Inconvenience Facebook group list. And may have read that the late director of International Still’s Disease Foundation, Inc. Carole Triller has passed away recently after complications that arose from Still’s. You may read her beautiful memorial at http://www.stillsdisease.org. Go to the Memorial tab on the left hand side and then click on her name to read about this wonderful woman. She was a very caring person.
When I was diagnosed in 2008, I was in such tremendous pain. I was extremely scared and afraid of what I was going through. I could not bend my knees, or lift my shoulders, I had drenching sweats and chattering teeth with 103 fevers around the clock, the rash covered my entire body. Desperately trying to find an answer to my health, I found the International Stills Disease Foundation site about the same time I was given a diagnosis.
Everybody was so kind, they would write me back immediately. I would type crying, sobbing, in such pain in my body, and I would always, always get a reply within a few hours. The team knew what I was going through. They cared. They truly cared 100%. I received emails asking how I was. I was crumbling. My liver enzymes were dangerously high, my ferritin level was 14,000. I was vomiting constantly. I was, I am ashamed to say, I was suicidal. I am usually an upbeat person. But this disease was killing me. The team at Stills Foundation gave me hope as I struggled with taking high doses of steriods. They encouraged me to never give up. I felt their compassion. I felt their desire to help. I love the team there. They gave me hope. And I thrived. My desire now is to give encouragement to those who suffer, provide them some hope.
I am sorry I have not been attending to this site as I should have. I feel that reading notes and journal entries from somebody who has been there, truly been there, is comforting.
I will be there for others, as they have been there for me.
Take care my friends,
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.