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.
I feel so grateful and a thrilling feeling to be healthy and alive. I’ve survived many stills flares, but this past experience was terrifying. For so many months my blood pressure was not under control. A team at Mayo, a cardiologist, nephrologist, endocrinologist trying to figure why my blood pressure would soar to over 210/110.…
I got the test results back yesterday from the ultrasound, the two days of 24 hour urine tests, the plasma blood work, the heart ultrasound. I showed up to the cardiologist office 30 minutes early. I was eager to hear the results of why this blood pressure and other symptoms have been so wildly out…
Here I am getting ready for the kidney ultrasound. It’s been a turbulent journey trying to figure out what is causing the blood pressure to sky rocket so high. It’s been scary. So many nights I have fought going to sleep for the fear that I would not wake up in the morning. 2 weeks…
The blood pressure med, Bystolic that was given to me by the cardiologist was working for a few days but then stopped working and the heartbeat in my head keeps waking me up at 5am. This is so awful. I did have two 24hour urine tests, but the results are not back yet. The cardiologist…
Read more Still searching for answers for this high blood pressure…..
The blood pressure doesn’t seem to be controlled since January 26th after the Covid vaccine. I am praying and praying we can get this fixed. I miss my life. I’m going to see a new MDs today. The last visit in the ED at a different hospital, not Mayo I was given immediate referrals to…
It’s been quite an ‘adventure’ since my adverse reaction to the vaccine. I’m feeling much better. I am grateful to be here. I am back to riding my Peloton bike. However, I can not ride my horse because I’m dizzy all day from the ridiculous medication. I feel like I’m standing on a surfboard. This…
I wanted to be a part of the solution to help squash the Covid virus. I had numerous confirmations that it was safe for me. I drove happy and whistling to the large stadium where the shots were being given. I waited in the long lines and finally it was my turn to get the…
I drew this morning coffee doodle because I felt we can all use a hug each day. So, this hug is for you. It’s been almost a year since my last flare. I think about this often. I probably shouldn’t dwell on it, but I keep savoring the days of perfect health. I wake up…
I do too much. I had a cold for the past 3 days. I felt back to normal yesterday, just a little fatigued and I pushed myself. I didn’t feel as strong as I usually do and I lifted a heavy object and caused some pain in my back. I should have known better. The…
Get ready! Get set ! Go! Let’s do it dragon slayers!! Happy New Year!!! No flares for any of us!! I pray and hope that we all stay healthy and flare free this year ahead!! It’s been almost exactly 1 year that I have not had a flare or been in the emergency room. After…
Read more Happy New Year! May this be a year of NO flares !! Live happy and pain free!
Adult Onset Stills Disease 