There is a saying in modern medicine, “if you hear hoof beats, think horse”. All that really means is don’t go looking for bizarre or rare answers. Thats what my doctors did. For 14 years my doctors listened to me describe the issues I was experiencing with my body and decided it wasn’t a big deal. I told them I randomly lose consciousness, my hands don’t work, my eyes don’t look where I tell them to, and so many other things. They heard my issues and said “its normal”. For 14 years I was gaslighted into thinking I was either making up my symptoms or that it was psychosomatic and I was crazy. Cardiologists, neurologists, endocrinologists, it felt like I saw every “gist” possible. In the end it took a FB video and my nurse practitioner to finally get the answers I needed. Sometimes hoof beats don’t mean horses. Sometimes hoof beats belong to a majestic zebra. I am a zebra. I have 3 rare conditions and several more common chronic disorders.
I have a myriad of bizarre disorders but the two that made us leave our lovely Narnia like state are Reynauds and hEDS. Reynauds being the lesser diagnosis if I had to pick an order of impact. My hands, arms, feet, and legs randomly turn yellow and do not work in the cold. You may be able to guess the impact this had on daily life on the farm. Not being able to go out and feed animals because my leg wont move from the knee down wasn’t a helpful attribute. None of the animals, my husband or myself appreciated this handicap.
I didn’t know until the last couple years it is considered abnormal to not be in constant pain. You know the standard pain scale the ER gives you? The one where you rate your pain on a scale of 1-10 with 1o being the worst pain you’ve ever experienced? It doesn’t work for me. My every day starts at a 2. My base line standard has never been less than a 1 even going back to childhood. I have come to find out this is the 2 connective tissue disorders I have, one being hEDS. Hypermobile Ehlers-Danlos Syndrome. It can mimic arthritis but will not show up on an X-Ray like arthritis will. My diagnosis of hEDS has actually – a year later – made my mom start looking into if she was misdiagnosed all those years ago when they told her it was Non-RA factor arthritis.
The really upsetting thing about the last part is that it seems that while my mom passed hEDS onto me, I have subsequently passed it on to Annabelle. She had to quit 20 minutes into her 2nd gymnastics class yesterday because her joints were hyperextending and she was in to much pain. My heart has never hurt quite the same as the realization that its my bodys fault that her body is in pain.
Why am I sharing all this with strangers on the internet? Mostly because, why not? It was a FB video that brought me to my first diagnosis and started us down the rabbit hole. If sharing some of what I am going through can help others then Im happy to share. It also helps to explain why we went from my Reynauds diagnosis Nov 2023 to moving across the country in July 2024. My doctors told me the only change in my quality of life would be to find a better climate. So far we are loving the area we chose. I’m hoping that continues through the winter and the move wasn’t all for nothing.