This blog is cross-posted at one of my other blogs Survivor: Living life with chronic pain, mental illness, and the ghosts of an abusive past.
This blog is a bit overdue. I saw the cardiologist in Columbia, Missouri at University Hospital. I took a picture of the rug at the entrance because it was the only place that I could find the whole title of the place.
Dr. Z was very nice. She was familiar with EDS (amazing!) and agreed to do a Tilt Table Test (TTT) and an echocardiogram. She explained that an echocardiogram is an ultrasound of the heart. The TTT will be testing for Dysautonomia and the echo will be testing for Mitral Valve Prolapse, and I guess any other funky stuff.
After Dr. Z finished with me she called in the doctor above her to see me. He walked in and I could tell he was happy to meet someone with EDS. He asked me how I know so much about it. He said that I knew more about EDS than he did, then he asked if I was a professional in the medical field! I was so surprised and excited. Of course I told him how I wasn't a medical expert but am doing my best to know all I can about EDS. Well I tried using those words; I'm afraid that I was so excited everything came out wrong.
Which reminds me, I need to get paperwork mailed to me to get my blood work done from the same place for my endocrinologist. He's a great guy and I am going to ask him about the lump on the side of my skull. It is probably no big deal, but my mom had Castleman's Disease and I am pretty sure that hard lump used to be a lymph node. I have no idea if Castleman's Disease is hereditary though. Either way an endocrinologist should know if something is wrong. I've had it for 4 or 5 years so it isn't killing me or anything, but it is still good to know what it is, right?
My TTT, echo, and follow-up are all on the sameday, which is good. This month I have the EDS doctor in St. Louis, MO. I'm excited/nervous! I have no idea HOW we are getting to St. Louis, and that is where most of the stress lies.