I am currently living with a disease so painful it is nicknamed in medical literature the suicide disease as there is no cure. I have had Bilateral Trigeminal Neuralgia now for 15 years. This is my never quit story. I was raised by a family of professional athletes. Loosing was not an option. My father was not raising a daughter but an athlete. Our daily chores included running and what ever strength training program we were on. The boys played baseball and I played tennis. I ended my career in college when I chose my husband and his Navy career over any future in the sport. I became the best ER nurse I could be working in the busiest ER in the state. I love the outdoors and turned my passion into triathlons and skiing in the winter. Why does this matter? When I was first diagnosed with TN I would have flare ups take time off then return to my active life. Over the years those periods of remissions would become less and less. The pain would come out of nowhere like a lancing blade of lightning striking the nerves in my face like the hand of God smacking you down. There is no way to tell when it is coming but like an exposed nerve being electrocuted you are at its mercy. I have had two craniotomies or brain surgeries to try to help with the symptoms. The surgeries caused more painful side effects. I now have anesthesia dolorosa described as a hornets nest in your face. It feel like it have acid poured on the right side of my face and a blow torch at the same time. There is no cure or known treatment. I can no longer work or run or ski or be me. I have gone through an entire identity crisis. Through this we have our own resident frogman living on our couch and I remember pleading with him to give me some pearl of wisdom on how to overcome crazy adversity and her just stared blankly and responded with you just survive.
I had to surrender myself to God because everything I was, an ER nurse, an athlete, an active involved parent, a beautiful loving full of life wife was gone. I had to find out who I was living in chronic pain.
My incredible husband was a corpsman and now a big city ft/paramedic now has a patient for a wife. We used to be that coupe every one envies. He was my partner, my lover now my caretaker. He is the most loving man ever and God gave him to me.( he says the same thing about me) I think he got the shit end of the deal. We are raising our daughters with me living in a bubble cuz anything sets off pain.
Every day is my never quit. Finding you’s and Marcus’s podcast has helped change my mindset to get me in a healthy place and push my physical limits. I can never thank you enough for that.