Even when hypopara is challenging, ‘just keep swimming’
Doing things that spark joy helps me manage my disease
“Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim.” — Dory from “Finding Nemo”
Hypoparathyroidism consumes me; it’s a constant battle, a full-time job. My life revolves around the condition, whether it’s supporting fellow patients, sharing my experiences with researchers, going to the doctor, or writing this column.
The joy of helping people, offering them strength in darkness, is indescribable. It makes my journey less daunting, knowing I can be there for others who feel lost and alone. This sense of purpose is what keeps me going. I hope it can ignite a similar fire in others, empowering them to face challenges with determination and hope. Together, we can overcome the hurdles of hypopara.
In September, after a transformative visit to my endocrinologist in New York City, I had a profound realization: “Get up and start moving.” It was a turning point for me. I decided to take a monthlong break from my regular medical appointments and constant focus on my disease to see how it would affect my well-being.
September was the best month. I felt great, traveled, saw friends, and went to a college football tailgate. I felt alive!
I ended the doctor-free experiment after my trip to Texas for the International Hypoparathyroidism Conference, held Oct. 3-5, where patients, caregivers, and medical professionals gathered to share their experience and knowledge. The connections I made with fellow patients were heartwarming, and the information I gained was invaluable. It served as the perfect ending to this liberating and rejuvenating month, reinforcing the vital role of our supportive community. This experience reminded me that there are good days, even with hypopara. I hope it gives you hope for your journey.
Finding joy in the journey
After returning home to Florida, I went to my monthly doctor’s appointment. I had no symptoms and felt great, so I was surprised to learn that my calcium was elevated. Does living in Florida help keep my calcium low? I doubt it. But it was interesting because, in just a few weeks, my adjusted calcium level went from 8.6 to 10.8 mg/dL. No changes had been made to my medications, only to my scenery.
Reflecting on October, I realize I’ve visited more doctors in the last few weeks than I did all summer. I saw my endocrinologist twice to figure out my calcium. Luckily, I was able to cut back on my calcium and calcitriol dosages (the conventional therapy for hypopara) so that I’m now only taking them once a day. That is a win.
While I’m hopeful I can continue with my current dosages, I’ve been in a similar situation before and know this is probably temporary. Still, I choose to remain optimistic.
This resilience in the face of setbacks, this determination to keep going even when it’s tough, is what I want to share. I want to inspire you to keep going, stay positive, and never give up, even when hypopara is challenging.
After my two endocrinologist visits, I saw my internist and my pulmonologist for a bronchial infection. I had a CT scan of my lungs and need to repeat it, as a spot was found that requires monitoring.
I also saw an oncologist who’s trying to figure out why my calcium levels fluctuate — sometimes high, sometimes low — and why my ferritin level is dangerously low, along with other abnormal labs. It’s frustrating and downright exhausting. Hypopara can be unpredictable, and many factors can contribute to these fluctuations, such as stress, diet, and even weather changes. Understanding these factors can help me better manage hypopara and anticipate potential challenges.
Maybe all the endorphins released during my trips affected my calcium levels. Traveling seems to help with my usually low calcium. It’s a reminder that our lifestyle and activities can influence our health. For me, managing stress is a key part of managing hypopara, and finding activities that bring me joy and relaxation can be just as important as my medication.
So, after a month of medical appointments, I booked a trip for this coming weekend to watch my San Francisco 49ers play the New York Giants in New York. This trip isn’t just about watching a football game, but about experiencing life to the fullest despite my health challenges. Doing things that spark happiness can diminish feelings of unworthiness due to chronic illness.
This brave butterfly will continue to spread her wings of hope. I will continue to travel, as that is my best medicine. I will continue to soar to new heights despite my diagnosis and hope you will, too.
Note: Hypoparathyroidism News is strictly a 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.
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