My life changed on Sept 2nd 2008. I work in various hospitals. I am an occupational therapist. My endurance has changed ever since I almost died of this mystery illness. On Sept 2nd, 2008, while working in the ICU, I began to feel cold, really cold. After working with a patient, 3 hours later, I had chills.…
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.…
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…
It’s been a rough several months. I’ve learned so much in these past 7 months since January 26th. I’ve learned to not rely on one opinion. I’ve learned to be proactive in my healthcare, VERY proactive. I am so grateful for an MD that I acquired in my care, quite accidentally. I was told by…
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…..
Adult Onset Stills Disease 