I know when I over do it, and I have overdone it
My endurance sucks! I hate having to curb my activities to get through the week without a fatigue crash. I had to go to San Diego, help do some moving, and I came home exhausted. But I had to work the next day, so I had to psych myself up to get through the day without collapsing. The nice thing is, I truly love, love, love my career. The disappointing thing is, when I hear and see the limited amount of units some of the other PRN people actually do in one day. I mean seriously, what the hell are they doing? Sleeping on a gurney somewhere in the hospital?? How can they do so little work? Or am I doing too much? I just do what I need to do, see the patients that need to be seen and gently persuade some patients that don’t necessarily feel like working with therapy, but almost all will when treated with gentleness and kindness. Then I came home had dinner plans and I collapsed into bed. Sunday, millions of errands, grocery shopping, rush home to put them away then grab an apple and get to horsemanship lessons, then rush home to make dinner. I know that my illness does not support my way of life and it has a very determined way of letting me know. I had chills last night and fever. I need to slow down now to avoid a relapse. Some things will have to wait and I must end this habit I have of taking on too much.
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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.
Hi there. I wrote back on your blog almost a year ago when I was diagnosed. I wanted to tell you that steroids helped a lot but didn’t put me in remission. I couldn’t take MTX because my liver was too bad at diagnosis. Did you have any organ involvement? I also wanted to let you know that my Rheumotologist has started me on Actemra since March. It has helped wonderfully and all of my labs have been normal ever since. I did have a reaction with Actemra so but now they pre-medicate me so I pray that continues to go well.
I hope you are doing well and the IF diet is still going great. Would love to see how you are doing!
Hugs to you and all those with Still’s Disease
Hi Jackie, I am so glad you are doing better. I am doing well. Yes I did have organ involvement, my liver was extremely affected, however after I weaned down from the steroids I was able to take the MTX. My labs have been good and I feel pretty well. The only times I feel yucky is Monday evenings, the evening that I take MTX. Fortunately, I am down to 2 pills a week, but the 2 little pills make my next day a bit slower and my stomach stays slightly queasy. By the 3rd day I am fine and then before I know it, Monday arrives again :-(. I do follow the anti-inflammatory diet pretty closely, and I have found I can add some dairy back into my diet. But when I try to add wheat, I feel horrible. Usually I feel pretty well though. I think the only thing I have found that throws me for a loop is extreme exhaustion. When I work too much and/or do too many errands from morning until night. (I have a hard time pacing myself). Then I will get chills, fever and require a large amount of sleep. I am so happy to hear that you are doing well! This makes me happy! Hugs to you and best wishes of continued good health!
I to have aosd, since July 2012, I have read your Blog with interest. I guess like you, the hardest thing has been adjusting from what you could do before and what you can actually do now. I find balancing the two very hard and when I get a good day i tend to overdo things so that a couple of days later I am exhausted. It’s a hard disease to live with and the battle with taking or not taking the meds is a daily one, especially when the effects can make you feel just as bad or even worse! I wish you well on your journey with this condition and hope you find some respite.