2 years NO Flare. Health is Good.
I have been feeling so good lately, and as we all know with this disease, don’t let this great feeling make you feel invincible. After the reaction to the vaccine, it’s been an exhausting road dealing with so many MDs: Cardiologists, SO many internists, Endocrinologists, CT Scans, Kidney function tests, bizarre diets to not disturb the blood millions of labs drawn constantly, etc. But I am finally down to only a med once a day the and it seems I will be off of this medication for the blood pressure maybe at end of the year. Quite miraculous considering that the day of the vaccine my blood pressure sky rocketed to 159/140 and there was no way to lower it for 5 months, despite 5 medications twice a day. True, at times, we had it down to 180/125 for several weeks and then it would soar again. But now, thankfully, since the vaccine is leaving my body I have returned to baseline of 112/70!! YAY!!!!
And I feel so good lately! Practically, the 1st time since 2018. However, doing too much, too fast and too often without a day to rest can cause this good fortune of good health to tumble. I have learned this over and over and over these years. I have been really trying hard to not get too ambitious and take on responsibilities that I can not follow though with. Some nights, fortunately not very often, I don’t sleep well due to fever and chills.
I have had a few days in the last 6 months when I need 12 or more hours of sleep. But, I have managed to keep the flares away for the last two years. Sleep is my secret weapon. I have started to think about returning to my beloved work on a flexible status via zoom. Since I have only had 1 vaccine, coupled with this wonky immune system, I can not even possibly entertain the idea of working with patients in the ICU. For the last several years thinking about working with patients was not even possible. But, I am thinking of pursuing a position to work via zoom. I miss my career so much. I will see if the stars line up for me to take this direction.
I had a meeting with yet, a 3rd Rheumatologist. I was truly hoping that this check up would be with the new permanent MD. There seems to be quite a shortage of this valuable type of doctor. The practice I go to has not had a permanent one for a couple years due to the retirement of the previous one I saw for 10 years. My labs were only off with a SED rate higher than normal, but all else was fine. So we are not alarmed.
So, for now, breathe in, breathe out, be mindful of the energy you use during the day and take time to slow down and rest.
I want you around for a long time 🙂
Stay healthy my friends.
Claudine
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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.
Adult Onset Stills Disease 
I believe you are in tge Phoenix or Scottsdale area? If yes, do you have a rheum you would recommend? We’re moving there in January and I am hoping to avoid the trial and error process.
Hello Vocki, I was with a very good Rheumatologist for 10 years. His name is Dr. Paul Howard. He is very good. He is now semi-retired. But does keep a new office and does see patients 1 -2 days a week.
The old previous office he used to work out of is hiring a new Rheumatologist. This office is called Arthritis Health (Scottsdale) They have 12 years of my records. So I have thought about seeing how the new Rheumatologist they hire will be.
So for now, I seem to be either with my long time Rheumatologist or possibly switching to be with the new Rheumatologist that will occupy the previous office where
my semi-retired Rheumy used to be.
I have tried a few other Rheumatologists through the years and had the most awful experiences. But I can not say their names, understandably.
I hope this helps.
Thanks for the info. I will try Dr Howard’s office. I have heard disappointing things about rheums in this area, including the Mayo Clinic, so your thoughts are appreciated.
I’m not sure of the Rheumys are bad out here, but what I have felt is there are not enough of them for the number of patients. Dr Howard is definitely one of the best and it seems that his old practice is having a very hard time finding a permanent one. So it is very likely I will stay with him. If it’s broke don’t fix it, right ?
Best wishes to you and hoping you are healthy and no flares.