Just an update, after careful consideration and discussion with my husband and 2 of his physician friends, who are not rheumatologists but other kind of MD’s, we have decided I will not stop the MTX this year, or maybe ever. The rational is that everything is going well, except for the minor flares that occur…
I didn’t sleep at all last night. I lay in bed thinking about going off the MTX starting next week. I tried visualization, positive thinking, envisioning good health forever after. I am terrified. I know I need to think positive. I was nervous about seeing this new doctor, Dr C. due to a very bad…
So I had my first consultation with the new Rheumy today, Dr. C. It took 2 1/2 hours. I felt like he didn’t really believe I had AOSD. He read through my documents from my original Rheumy, Dr H. the one I’ve seen for past 5 years. The new Rheumy, Dr C. read all of…
Wow. Sometimes I receive advice that I have been telling others to do and try, especially to my patient’s in my career. But today, the advice can came at me like a mega-horn in my ear! And a big bass drum pounding the words “SLOW DOWN”. Thank you dear reader that recently posted about how…
While at work yesterday at the hospital, I noticed, again, the strange episode of fatigue that comes over me. Im not talking about the normal tiredness that can come about with a little less sleep, or a busy day. Im talking about strange episodes of fatigue that come over me for about an hour then…
Overall, as most of you know, I have been doing really well. I follow the IF diet (anti-inflammatory diet. the app I use is IF tracker), I get enough sleep, keep my stress low and exercise, doing zumba, spin class or hot yoga. My husband travels occasionally for business. I usually don’t go because the…
Things have been going well. I have not had any full relapses. But In the last 7 months I have had a few episodes of rash coming on directly after feeling very cold and chilled. Today i experienced a rash episode. I had quite a few errands to accomplish which is not unusual on my…
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…
I accepted a position. I did my first day yesterday. I had taken the position with the full disclosure of my illness and the problems that could arise if I don’t stick to my plan of 6 hour days. I know what happens, it’s happened before. I accept a position, I get really motivated and…
Read more Big Heart, The only OT in the Hospital & Poor Endurance, Don’t mix well
I tried, I really, really did. I mean, seriously, who wants to have to take meds to survive? I was trying to eventually wean down to 1 pill. I was down to 3 pills every Sunday from 7 when I started, but after 1 week of trying to go down to 2, I felt like…
Adult Onset Stills Disease 