Finding my purpose 10,000 days after my hypopara diagnosis

“Scars are souvenirs you never lose/ The past is never far.” — “Name” by the Goo Goo Dolls

As I’ve previously written, I take a photo every day as a reminder of a life lived, not one that has passed by. I have boxes of photos from all stages of my life, thrown together, but not organized.

I came across one of me from Nov. 9, 1998. My hair was blown out in curls and I wore a red sweater to go to my favorite restaurant, New York Prime. I was wearing beautiful diamond studs my ex-husband had bought me to celebrate our first wedding anniversary. I looked happy and healthy. The best part of my life was beginning.

The very next day, however, I had a total thyroidectomy, which resulted in a diagnosis of hypoparathyroidism. It was the last picture of pre-hypopara Bari.

I put it aside and noted on my calendar to write this week about my 27th anniversary with hypoparathyroidism. Unfortunately, my brain fog kicked in and I have no idea where I put that photo. It was supposed to be the star of this column, but now it’s gone, lost in the chaos of hypoparathyroidism.

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While searching for it, I found my diary from that time period. I opened it to a random page — Nov. 6, 1998. Everything happens the way it should.

Dear diary,

Today I write, not knowing where I will be a year from now. This week, I will have my thyroid removed — no big deal, they say. The future is a mystery, and I’m ready to unravel it. A year ago, I was busy packing for my honeymoon. I’m lucky I married my best friend, and I look forward to celebrating our first wedding anniversary. But I am scared. In just a few days, my thyroid will be removed because I have Graves’ disease. I will have to take a pill every day for the rest of my life. I will gain weight. I have to be brave. My whole life is ahead of me. I wish for a baby. I am doing well at work and was promoted. Life is great, a dream come true. I would be lying if I said I’m not nervous. What happens if I forget to take my medicine? Will I have a scar? Feel different? I have many questions, but only time will tell … A whole new world awaits. The best is yet to come. I’m ready to embrace it with open arms.

I have no recollection of writing this. It was one of the last entries in this diary. At 25, I was filled with hope, anticipating the best years of my life. At 52, I am wondering where half my life has gone, pondering what the next 27 years will hold for me.

Finding my purpose

I’ve faced so much adversity since my diagnosis almost 10,000 days ago. I can complain about that or I can focus on the miracles that have come my way since then.

There have been more good days than bad ones, and the best days include time with my children, Drew, 26, and Harrison, 24 They are the greatest gifts and have made every day worth living. Watching them grow up and succeed in their careers as a chiropractor and a sports director, despite the obstacles they faced due to my diagnosis, is a fantastic feeling.

Twenty-seven years ago, I was a vibrant, beautiful 25-year-old with a future filled with possibilities. Through “Brave Butterfly,” I’ve discovered a purpose that extends beyond being a mom. I am able to share my experiences, speak up, and be the change that I envision. I’ve learned that sharing what has happened to me, my fears, and my triumphs is both important and necessary. It connects me to the hypopara community and helps all of us feel understood and have hope.

“Hypoparathyroidism News“ has been a blessing, a reminder that we’re not alone. Through this platform, I’ve helped many, and I’ve been helped through emails of support, encouraging messages, and thanks from community partners. I can’t describe the feeling, but it’s the best part of being hypopara and has been a great reward. I’m grateful for it.

I don’t know how life would have turned out if I hadn’t had this thyroidectomy. I have loved and I’ve lost, but I have never given up. I am grateful for all the days I’ve lived since my diagnosis. I will continue to soar high, facing challenges and sharing my story. I know this brave butterfly will persevere for all of us, until I can no longer.

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.