The story of Beth
I’ve never been a “healthy” person. All my life I struggled with health issues. I grew up in an area of the United States called “the downwinders” where there is nuclear pollution from nuclear weapons testing as well as one of the largest copper mines in the USA. It’s also a very small town without a lot of doctors well versed in rare diseases. I was born with a tumorous placenta. I ended up with pneumonia in infancy and have suffered from asthma and seasonal bronchitis all of my life. The only sport I could remotely do was gymnastics. But I suffered from frequent ankle sprains and had to tape my wrists because they were “flimsy” for lack of a better word. Little did I know it was because I have a disease called Ehlers Danlos Syndrome. It makes my joints extremely flexible but also prone to sublaxations, dislocations and arthritis.
I had my tonsils removed due to tonsil stones and getting sick all the time at the age of 12. At the age of 16 I had my right ovary removed due to cysts and a teratoma. At the age of 27 I had my gallbladder removed due to gallbladder autoimmune disease – not one single stone. And at the age of 29 I was diagnosed with thyroid cancer and ended up having my thyroid and parathyroids removed followed by radioactive iodine treatment. At the age of 30 my left ovary had a cyst that hemorrhaged and twisted and during emergency surgery in the middle of the night I lost my ability to have children. I am childless.
I was told that thyroid cancer was an “easy” cancer, that I had nothing to worry about. But in 2008 at the age of 31, I was diagnosed with a rare form of metastatic thyroid cancer called RAI-refractory papillary carcinoma. Less than 15% of thyroid cancer patients have this type of cancer. I underwent another neck surgery in February 2008 that removed around 30 lymph nodes from my left laryngeal nerve, around where my thyroid was, and my upper chest/mediastinum. I still had cancer behind my carotid. They tried a higher dose of radioactive iodine. It didn’t work. So they sat me down and told me with my type of cancer that I was most likely incurable but could live indefinitely with my disease.
Living with cancer indefinitely. Not such a fun idea. But that was the reality I was facing. In 2012 I fell down a flight of stairs and hurt my back and ankle. The MRI of my spine revealed I had a spinal tumor called an osteochondroma in my t4/t5 thoracic spine area. While osteochondromas aren’t rare-growing them in your thoracic spine is EXTREMELY rare. I was immediately sent off for a PET scan to make sure it wasn’t cancerous. The PET scan and ultrasound however revealed that my tumor behind my carotid was growing and had spread to my upper jugular. They needed to do another surgery to save my life. Another surgeon did the surgery and much to everyone’s surprise he was able to remove it all. I have been in remission and for all intents and purposes “cancer free” since Feb 8, 2013 after living with cancer for over 7 years.
I ended up finally having my ankle reconstructed on dec 24, 2013 after walking on a torn tendon for over a year. In November of 2014 I was diagnosed with Postural Orthostatic Tachycardia Syndrome-POTS. That led me to being diagnosed with Ehlers Danlos Syndrome in March of 2015. Both of which I’ve had my entire life. It explained why I couldn’t ride Star Tours or the Tea Cups at Disneyland. It explained why I was so flexible and my joints were so flimsy. I ended up going on Paxil in March of 2015 to help me deal with everything. It was the worst mistake of my life.
April 24, 2015 I ended up suffering from a subarachnoid hemorrhage/hemorrhagic stroke to my left frontal and parietal lobes as well as my right superior parietal lobe due to a rare condition called Reversible Cerebral Vasoconstriction Syndrome which they directly attributed to taking Paxil. Needless to say, I’m blocked from taking all SSRI and TCA types of medication now.
My thyroid cancer left me with permanent hypothyroidism and hypoparathyroidism. I have to take 2 thyroid hormones a day as well as prescription vitamin d along with large amounts of calcium and vitamin d supplements. Hypoparathyroidism combined with EDS and osteochondromas is a very horrible mix for my bones. It’s left me with countless bone spurs and bone abnormalities-particularly in my thoracic spine.
I’ve survived over 7 years of thyroid cancer, a hemorrhagic stroke, and am stuck living with POTS, EDS, hypoparathyroidism, hypothyroidism, and a thoracic osteochondroma. What’s your super power?