Tag Archives: Stills disease

A Blessing in disguise??

I have learned to look at situations with different viewpoints. My initial viewpoint is usually from the view of a very personal insight (of course, as we all do) for example, somebody does something nice, we are happy, somebody does something mean, we get mad, somebody acts like an idiot, we get annoyed, etc etc. So I have been trying a new experiment for the last 2 days, (ironically the universe has been giving me situations to try it out).

Yesterday, I had an appointment with a new Rheumy. I arrived on time and the receptionist said, Im sorry your appointment is not on our books. I said “I don’t understand, I received a confirmation call yesterday confirming my appointment, and I made the appointment a month ago and I make a post it note for every appointment and put it on my calendar that moment”. I thought back on the phone call and know that I did not mix this up. The receptionist said, “Well, Im sorry but that person who made your appointment no longer works here, and the person who called you yesterday, should have told you the date has been changed to April 7th, not for today, I guess she forgot to tell you, sorry, see you April 7th” She might as well told me “see you December 3rd of 2023”. Same feeling I received. Uncaring office staff. Poor attention to detail, is this how they run their office? Hmmmm…..

What!? Why would they call and confirm a date that was know longer in place?? What is wrong with people?? Do they go to work under the influence?? I took a deep breath as she wrote out a new appointment card for me. I wanted to yell at her, but whats the use? Don’t kill the messenger, although her blasé attitude deserved something! I said nothing and left. As I drove home, I thought what other way can I look at this? I decided that it must be a sign from above. Perhaps, she is not the right Rheumy for me? Perhaps I would be her 1st AOSD patient and she has no experience with Stills? Perhaps she is not as friendly as her health grades say? Either way, I took it as a sign and felt I owed an IOU to the universe for letting me use my alternative viewpoint ability. I felt much better afterwards and i still have an appointment on April 1st with another new Rheumy. I called them to reconfirm. They validated, “Yes, you have an appointment April 1st, the doctor has put an hour aside to visit with you. Please have a wonderful day”.


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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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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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