My Story
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Hi, my name is Billie Jo and this is the short version of my life with Graves'. I have been working on a book that is expected to be released this year which will provide more details on my journey to surviving Graves' disease. I'm so excited for the release!
In 2007, I noticed rapid and significant emotional and physical changes. Looking back, my symptoms that I now know as Graves' were there off and on for years but were dismissed for one thing or another. The primary symptoms I went to my doctor for were hot flashes, edema and urine incontinence. I was bounced between my primary doctor and gynecologic for about a year. They both thought it was a woman thing, possibly perimenopausal in my 30s. It wasn't until the symptoms of Thyroid Eye Disease (TED) was obvious did my doctor finally get the diagnosis right. When he told me I had Graves', well you can imagine my initial thought from the name alone was that I was dying. Thankfully, he quickly explained with a brief definition.
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The many psychological and physical symptoms made me a hot mess by the time I was diagnosed. Comprehension was gone, anxiety, paranoia, depression, brain fog, and so much more made understanding Graves' so much more difficult. My physical symptoms included pretty much every one listed: heart Palpitations, hot flashes, weight loss (didn't mind that one!) tremors, shortness of breath, muscle weakness, hair loss, edema of my ankles and I could not cough, scream or laugh without tinkling my pants - in my 30s wearing pads for urine incontinence. The list could go on and on. And, of course, let us not forget my TED, which was extremely painful for two years and to this day I still suffer from dry eyes and flare ups.
I was prescribed ATDs, but honestly they did very little at this point. My doctor sent me to Ears, Nose & Throat doctor who performed a total thyroidectomy. He said I had so many nodules that he stopped counting. A small amount of cancer was found, but contained to the thyroid so I did not need radiation. I was told now that the thyroid was gone, I would soon start to feel better - farthest from the truth!
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That first year after surgery was pure hell for me and my family. I saw an Endocrinologist who basically made me feel like I was making up all my symptoms. Told me to just give it time. Needless to say, after the second visit, I stopped going to him. It was a waste of time and money. So I went back to my primary doctor, who too had very little answers, but it was cheaper and more convenient to have my lab work done through him.
The second year after surgery wasn't much better. I was still struggling with some muscle weakness, hair loss, fatigue and bladder control, but the psychological symptoms were making me crazy - or at least felt like I was going crazy without any sort of answers or validation. I was still suffering from anxiety, brain fog, paranoia, depression and insomnia. There were days I slept well over 12 hours and not leave my bedroom for days and rarely left the house. It was a very dark time in my life and no one could give me answers. Sure some of the symptoms my friends and family could see, but most of them were invisible. It was really tough on my family and I had no answers to give them.
In 2010, I started the Facebook page Surviving Graves Disease desperate for answers and I soon found out I was not alone! It was the most uplifting amazing feeling to know that I was not going crazy! I honestly believe that validation played a big part in my healing. Through the years, I have learned so much about myself and Graves' from others sharing their journey. It took me over five years to find some sort normalcy in my life. Most of my days are good, but Graves' definitely left a footprint. The anxiety is still there, but not nearly as bad.
There are plenty of people who have Graves', receive treatment and life goes on as if nothing really happened. But, for the those who struggle years after treatment there are little to no answers, support or help. I hope Surviving Graves' Disease brings all that is missing to someone in need.
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Through awareness, there are answers, support and compassion.
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