Tag Archives: Rash

6.5 weeks could prove…

[Huge Sigh]…scared…but I feel must try one more time…so scared… I feel like running to the MTX bottle for the dose, but at the same time, I know I must try. I ask myself, why am I doing this? Would it kill me to stay on a super low dose? What’s the big deal if I keep taking the MTX? My labs are good. But they have always been good when I was pulled off the MTX before. So, I don’t regard good labs an indicator to stop meds. MD: “Wow! Your labs are awesome! Lets pull you off the MTX!!” Then, WHAmO! 6.5 weeks later hello stills monster of the black lagoon.

I didn’t take my MTX this week. Mondays are my night. Have I been staying on MTX even though the dose is so low, my body may not even know I take it? If this true, placebo is great. Fear factor in play. Fear center stage. Fear take a bow. The repercussions of a flare are tremendous. My mind is compulsively thinking about not trying this stupid antic. There are some really bad things that happen to me when I flare that I have not written about. It’s happened twice. I have had surgery twice. Thinking about the possibility of going through surgery again scares me so much I am obsessive about it. My husband feels that if the fear of a flare is so overpowering then why not stay on 1 pill forever? I guess it would be fine?? Tragic that this disease is so random and idiotic. 6.5 weeks from today could prove I was stupid for trying this. It takes 6.5 weeks for the MTX to leave my body completely. I will sleep on this tonight. If I can not feel safe going off then I will wait a while longer to feel when the time is right. I see the new Rheumy tomorrow morning at 10:30am. I hope she is sympathetic and has seen AOSD before. I dont want to be her experiment. I have heard she is nice and that she had good “health grades”. This is reassuring. Thanks for listening. Have a good night friends.


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Practice What I Preach (Trying!)

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 she takes time, schedules naps, and paces herself. This is what I have been trying to do, (trying so hard) to really do. Take SCHEDULED rest breaks.
I think I recall my husband telling me this about 46 times a day. And although I listen and say I will, errands, tasks, household chores, a list of things I “must” get done beckons me like a robot on autopilot. I just keep going and doing and moving and driving and grocery shopping and cleaning, etc, etc. until I collapse. But, today, TODAY, thanks to a recent reply I had from a reader, for some reason, I started to sink in, I mean really sink in.
To tell you the truth, when I started reading the readers’ reply, I felt like I was reading something my husband or family wrote as a “guest” reader. Strange, that I would even think that my husband would take the time out of his busy work schedule to make up a reply. So I showed it to him while he as getting ready for work. He kept getting ready and said, “It seems like other people with Still’s are doing what’s best for them, I think you need to start listening to your readers replies and practicing what you preach”. Then he gave me a caring smile, gave me kiss and left for work.
I have the day off from work today, actually, my work schedule has been vey light lately. I could pick up extra shifts all over the city (because I used to be a work-a-holic to the max before I got this Still’s issue and I am employed by several healthcare facilities). But, I hold myself back, limit myself, to a few days a weeks (so that I can fill up days off with meaningless chores and errands instead) Crazy, i know 😦
I live with a tremendous guilt that I’m never doing enough. But at the end of the day, when I collapse of fatigue and get the teeth chatter and chills, I cry that I do too much. My husband, always caring, just shakes his head, hugs me, and begs me to “stop the madness”. For some reason, today I will do my very best to take breaks. There is no replacement for good health. If you don’t have your health, you don’t have anything.
Thank you dear readers.
Stay healthy my friends.


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