It's not Wednesday, but I just have to share a win. I saw a new primary care doctor today. (My other one moved away). I went into the appointment with my health summary and all the anxieties of being too complex and being a chronic pain patient. All I can say is, wow. She spent an hour with me. Learning all about EDS, MCAS, and POTS. Also, learning how I manage all that with medications, doctors, treatments, the zebra club, etc. After talking with me, she said she saw two other people this week with hypermobility and associated comorbities. She said, last night she was up late researching those symptoms and was reading about EDS and then today I came in with all the answers, lol. She said they are just like you!! She made a list of resources, including tzc, to share with the other patients. And she is going to sign up for the EDS echo clinician program. She made me feel like I was the only patient in the world. She believed me, listened to me learned with me and supported me. She said, "You just need me to be your quarterback." YES!! I just wanted to share all this to say the good doctors may be hard to find. But they're out there. Just keep looking. You deserve to have someone believe and support you. And even if you see a doctor who can't help you, just know that you provided just a bit more EDS education that may someday help someone else.
Posted by Bethany at 2023-01-05 18:16:32 UTC