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.
So many nights I was afraid to go to bed for fear I would not wake up due to an aneurysm or stroke. Nobody lasts very long with a blood pressure this high for months on end. Of course, it would lower to 170/103 but i felt awful. My face was flushed, i had the heartbeat in my ears.
Thankfully, thankfully, ALL labs work, all CT scans, Ultrasound of my heart, kidneys, intestines, abdomen all came back negative last week. It’s still puzzling but my blood pressure is lowering and I am almost at my previous blood pressure before the Covid vaccine on January 26th at 9:50 am
About 3 weeks ago, I awoke with the blood pressure so high that I was feeling I would not live to see the end of that day. After many emergency room visits and they did nothing to help me, I didnt want to go back. All they would do is make me lie there without medication. The bp cuff would squeeze my arm so tight that my blood vessels in my hand would break and I would have dots of blood under my skin and they STILL NEVER GAVE ME MEDICATION. I could not bear to go back with a bp of 212/110.
My husband called his best friend, a chief cardiologist. He asked what can we do, her blood pressure this morning at extremely high. I am scared for her, she is very scared. His friend called in 2 medications quickly and asked my husband to drive me to pharmacy with him, go in and get the medication, and take her blood pressure every 5 minutes. If it goes down in 20 minutes below 180, this is good. If it doesn’t go down give her the 2nd medication and drive immediately to the ED due to she may “bottom out” and could go into cardiac arrest. This is the chance we took that Sunday morning a few weeks ago.
Fortunately, it started to go down. It kept going down for the nest hour and stayed at around 140/89 for 2 days. Then it lowered to 122/80 for the next week. Thank the heavens. Thank the good lord above. Thank GOD for my husband to have such a good friend who knew what to do. I know he saved my life that day .
I did go to another cardiologist and he gave me another pill to add to the Nifedipine that my husbands friend prescribed. He added a Beta Blocker for 2 weeks in addition to the Calcium channel blocker. But now I am no longer needing the beta blocker and my calcium channel blocker has lowered in dose to 30mg from 60mg.
My blood pressure stays at 118/89 and I feel better than ever. Ive started exercising, doing light weights, jogging on the treadmill and gentle yoga. I have not exercised since January due to the feeling of complete exhaustion and weakness (and fear of dying).
I have a new feeling about life. I have never had this feeling before. I have always been grateful but now I feel a tremendous calm. A joy each time I wake up. Sometimes I cry for not knowing how good one can feel about life. It’s almost surreal. We all here for such a short time.
My wish for you today is to go outside and touch some trees, photograph tree 1st bird you see, find a small flower and put it in your pocket. Take a photo of a small child smiling, your cat napping your dog playing. This is life.
Take care my friends.
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.