The unpredictability of living with hypoparathyroidism is like roulette
I feel like a ball spinning around and around on the wheel of life
Written by |
“The wheel is turning and you can’t slow down,/ You can’t let go and you can’t hold on,/ You can’t go back and you can’t stand still.” — “The Wheel” by the Grateful Dead
Sometimes I feel like living with hypoparathyroidism is like playing roulette, because I never know what number the ball will land on. The disease’s unpredictability makes it impossible to know the odds of having a good day or a bad one. Some days I win, and other days hypoparathyroidism wins.
A week in my hypopara life is like the roulette wheel because, most of the time, I am constantly moving but can’t seem to land on a winning number. Like an endless wheel, my hypopara life never stops spinning.
A typical week in my life
Someone recently asked me why I share such personal details of my life. That question made me stop and think. I realized that, while I’d like to talk about other things, my life revolves around hypopara — managing it is all I do. (Trust me, I’d rather talk about other exciting adventures.)
I explained that I share my personal struggles in order to help others. After years of hiding my disease, I learned that my voice is valuable, so I speak out.
To help people better understand what a typical week of living with hypopara looks like, the following is what I did during the week that I wrote this column.
Every Monday starts like clockwork. I meet with my acupuncturist and functional medicine doctor. Then I go for weekly labs, which include a complete metabolic panel and a blood count.
Columnist Bari Vapnek gives a thumbs up after winning roulette at a casino recently. (Photo by Harrison Vapnek)
My Tuesday of that particular week looked a little different from most. I spent hours in a dental chair because I needed some crowns. (I didn’t feel like a princess, though, because it was exhausting and painful. Plus, I have a hard time sitting still, which made it even more uncomfortable.)
Due to hypoparathyroidism and the fact that my body doesn’t produce enough calcium, my teeth suffer. So now I have monthly dental appointments to help repair the damage from 29 years of my body not having enough calcium.
I try to schedule only one appointment a day, because more than that is too much. Doctors can run late and appointments can go longer when new symptoms arise. It’s physically exhausting for me to see two doctors on the same day.
However, on that particular Wednesday, I had to see two doctors. My morning began with a psychiatrist who has been helping me manage insomnia and post-traumatic stress disorder due to hypoparathyroidism. Those appointments are exhausting, too!
The second appointment was with my nephrologist, who helps me manage chronic kidney disease. Over the years, I’ve developed numerous kidney stones. My kidney function has declined, even though I’m taking Yorvipath (palopegteriparatide), so my doctor ordered some additional tests. I’ll do a 24-hour urine test and have another CT scan. Now I need to schedule more appointments.
On that Thursday, I repeated my labs. I’ve been going for biweekly labs since a recent calcium crash. My arms are so beat up that I have to wear long sleeves despite living in Florida!
After that, I went to my oncologist and had a five-hour iron infusion. My ferritin and iron saturation have been running very low, even though my hemoglobin and red blood cell counts are normal. For someone who can’t sit still, it was a long and exhausting day of sitting around.
I am like that ball on the roulette wheel, constantly spinning. When Friday finally came around, I couldn’t even move. The torrential rain outside made it a dark, dreary day, which somehow matched how I felt inside. I was physically and mentally drained.
My Friday fun probably looks different than it does for most people. I felt like I’d spun around that roulette wheel so much that week that I needed to stop. So I decided to write this column, which was fun!
This is a typical week for me, and I’ll just keep spinning until I land on a winning number!
Note: Hypoparathyroidism News is a strictly news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.
Leave a comment
Fill in the required fields to post. Your email address will not be published.