Trip to the Mayo Clinic

My trip to Mayo was filled with "God signs". In our small hometown airport, the first person we saw at 7am when we arrived was my mom's doctor. The doctor, who over 20 years ago, diagnosed my mom with a "strange muscle disease". They didn't really know what it was but she was wheelchair bound for a while and then walked with a cane. Her doctors had not seen anything like it and just treated her symptoms with various injections, IVs, and therapies. So to see her doctor after so many years was definitely a God moment. My mom explained where we were going and why. He looked at her and said, "this has to be genetic. I bet whatever she has, you have too."

We arrived in Minneapolis and it was snowing like crazy. All flights were cancelled into Rochester. Our appointment was first thing the next morning and we couldn't miss it. If we did, we would be put back in the pool of appointments and this trip would be for nothing. We rushed down to the bus area of the airport and sat and waited for a bus with tons of other people trying to go to Rochester too. Mom and I plopped down next to a nice looking lady who began talking to us. We could tell immediately she was a southerner as well. She was going to Mayo too, and this was not her first time. She told us all of the ins and outs and what we needed to know to get through the process quicker. Each bus came and went and we were never on them. (There was a long waiting list) After much prayer, asking God if it was His will, we would get there, a nice older man came up to us. He had gotten a cab and wanted to know if we wanted to split it with him. (It was a very expensive cab ride, so of course we wanted to split the cost with someone) We took it as a sign and jumped in the van with him. He was a nice grandfather type who was also going to the Mayo Clinic. We chatted the whole ride there and I knew he was put in our path for a reason.


We started my appointments bright and early the next day. After many tests and office visits I was starting to wonder if I would ever get a diagnosis. I asked one doctor to please refer me to genetics because I felt like it had to be the same thing my mom had. It was way too coincidental that at the same age my mom had the same symptoms (and still does sometimes). The neurologist was hesitant and said I wouldn't get answers from there, but she referred me anyway. We went to genetics, did more tests and family history, and....drum roll please.....got a diagnosis. FINALLY! After 10 years! Someone is acknowledging my pain and giving it a name. Ehlers-Danlos Syndrome. And yes, it is what my mom has. I have never felt such a weight lifted off of me. I felt like I lost twenty pounds in that moment. I said a silent "thank you" to the man upstairs for bringing me here and then to my mom who stuck with me throughout the whole journey.

Though it felt like the end of a journey, it was only beginning. Only now, with a name.