It has been a wild ride the past 9 years, and after requiring a renal autotransplant in October 2020, I decided it was time to share my story with chronic illness. I touched on some high highs, like becoming a professional triathlete. To the lowest of lows, leading to immobility, malnutrition, and a kidney autotransplant!
On the outside, I look like everyone else. But, my genetic makeup tells a different story. I suffer from Ehlers-Danlos Syndrome and Dysautonomia, along with the many comorbidities that come with these diseases and plague my body.
Internally, my connective tissue is defective, allowing everything to fall apart and slowly deteriorating soft tissue. And a nervous system with the worst communication and forgets to tell my brain to pump blood or digest food along with many other things. Unfortunately, my dirty genes have crushed my dreams, and from time to time, have left me debilitated and immobile.
I’ve endured a lifelong and painful journey of unexplainable health problems. I began getting migraines, stabbing chest pains, dislocated joints, muscle, and joint pain as a young child. As a young teenager, I started having severe abdominal bloating and pain. Doctors would write off my symptoms as growing pains, hormones, gas, etc. They’d take one look at me and explain that I was “young, active, and healthy,” so nothing was wrong. Being that they were doctors, we believed them.
As an adult, I carried over my active lifestyle and became a professional triathlete, all the while managing each symptom individually until I just couldn’t anymore. I felt all of my hopes, dreams, and identity slipping away. I slowly began to be able to make it through the day, doing the bare minimum. I felt hopeless and completely overwhelmed with an immense amount of guilt from the financial and emotional burden I had become to my husband and guilty that my kids weren’t getting the best version of me possible.
I saw doctor after doctor who told me the same thing. “You’re young and active. Nothing is wrong with you.” Or, “it’s all in your head. I can’t help you.” I visited the ER and the hospital almost weekly. It wasn’t until I had severely elevated inflammation markers in my blood work and heart, as well as declining kidney and liver function, that doctors acknowledged something was off but couldn’t tell me what it was. So, they just kept monitoring it and doing blood work every so often. So, I kept showing up and waiting for my liver and kidney to fail to the point that I’d need dialysis or transplants.
When my life changed course in the winter of 2019, I finally received the answers, correct diagnosis, and found doctors specializing in rare creatures like me. It was shocking how quickly they could point me in the right direction and identify root problems. I have been dealing with multiple vascular compressions that ultimately led to a kidney autotransplant in October 2020.
Of course, I’m still afraid and sad of all the unknowns, but I recognize the gift of a second chance that has been given to me, and I’m ready for “Life 2.0.” I know it won’t look like what it was or what I thought it would. I will never be out of the woods, and I’ve accepted that these are lifelong conditions. I know that the universe has a better and much bigger plan for me. I will never stop fighting for my health or advocating for myself. And look forward to and trust the journey I’m on to becoming.
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Click Here for More Info On:
Dysautonomia
Ehlers-Danlos Syndrome (EDS)
Postural Orthostatic Tachycardia Syndrome (POTS)
Nutcracker Syndrome (NCS)
Superior Mesenteric Artery Syndrome (SMAS)
May-Thurner Syndrome
Pelvic Congestion Syndrome (PCS)
Methylenetetrahydrofolate Reductase Variant (MTHFR)
