And again I find out that having a very rare disease and taking common medicine doesn’t always work. I’ve had a cough that’s been going on for quite a few weeks and it seemed to be getting worse. I went to Urgent Care and the PA gave me a cough medicine. The bottle was so…
I remember this too well. During my flares the dangerous situation called MAS (macrophage Activating Syndrome) occurs. I’m writing this due to an online friend in an AOSD group I knew who didn’t get treatment in time. I wrote to her sister and told how sorry I was. She was always so kind to me…
Read more MAS my journey with it, as well as yours probably, if you have AOSD 😔
I met the new Rheumatologist. She was very caring and very patient. I never felt rushed or overwhelmed. She had seen cases of AOSD in California during her work there but she did admit that she had not seen many cases of AOSD in Arizona. And it was wonderful that I didn’t have to explain…
It’s been a while since I’ve written in this online journal. The last time I wrote I was having some fevers and sweats. My labs came back on the edge of normal, thank goodness. The lab value for the CRP was at the end range. All other labs were good. We know the dragon thrives…
I’ve been fortunate to have felt so good for so long. It’s been at least 6 years since a last flare? And then recently I learned my Rheumatologist retired. I had called a few weeks ago to get a bone scan done and the office number was disconnected. Wow! How does one go about finding…
I felt that it was time to post in my online journal. I’ve thought about posting many times, but I kept hesitating. My health has been generally good. Although, I did go through a stressful surgery last February. I believe it was due to the many years of flares and the years of inflammation in…
How much pain can a body keep going trough ? This CoVid has hit me so hard. Day 3 of Paxlovid. The high temperatures of 102 have decreased to 99. Extreme fatigue stays. Constant Coughing. The pulse ox says O2 is good. Severe diarrhea not sure if it’s from the covid or the medication. Severe…
I’ve been meaning to write in my blog to document my progress. Today I am too weak to go into detail of the surgery I had a few months ago. I’m feeling tremendous fatigue today. I took a covid test and it came back positive. I felt so normal yesterday. I washed two horses, rode…
Read more Covid Positive today. Rough going these past few months.
I read some posts today about the grip the dragon has on some people right now. My heart aches when I read their stories. I understand the pain and suffering all too well. The dragon has left me alone for 2 years now. I say a prayer of gratitude for each day I have without…
Read more Sending out love to all who are suffering due to the dragon.
I have found a secret weapon for healing keep flares away. Sleep. This month marks exactly 2 years since my last flare. I truly believe I have sidestepped a flare once or twice this past two years by sleeping and most of all monitoring my sleep with an app I found a couple years ago.…
Adult Onset Stills Disease 