Revisiting Mayo Clinic: My Ehlers-Danlos Syndrome Diagnosis Story 3/12/2013
It has been snowing here for two hole days..which seems magical to me. Snow is such a peaceful thing God has given us, making all things white and clean and new. Whenever we are waiting for an appointment, we gravitate to the large windows overlooking the old buildings downtown while we watch the snow float in the air.
Yesterday (Monday) was crazy and awesome all at the same time. We arrived at the 18th floor of the clinic at 9:15 to meet the doctor that would be in charge of my visit. I believe she is in the field of Internal Medicine.
Here, you meet with one doctor initially and they serve as the "conductor" to your "symphony".. they orchestrate everything behind the scenes. They tell you what appointments need to be scheduled, and will shift your schedule around during the day if something alarming/eye opening pops up on your tests.
I spent a good two hours with her going over all of my past and present medical history, undergoing an exam and hearing her recommendations for my protocol while I am at the clinic. As we left the office I was given a large packet of papers with my itinerary for the next few weeks.
Monday was packed FULL of tests..lab tests, x-rays, EKG's, allergy tests.. SO many tests. Which were all amazing. I cannot even imagine how long it would have taken me to have all of those tests scheduled at home. We got to the clinic at 9:00, and left the clinic at 5:00 pm. A full work day.
As we traveled from test to test we were serenaded by beautiful music and singing coming from a grand piano in the lobby of one of the main buildings. Later that afternoon there was a pianist and a flautist. It was really beautiful to me to see people in wheel chairs wheeled to hear the music.. mothers holding their sick babies, elderly couples holding hands with masks on their faces to cover them from sickness.. I began to think about heaven and how one day we will all be gathered around worshiping. Only there we will have NO sickness, no pain, and no sadness.
Today my mom and I arrived (by way of the chaplain that works with the house we are staying at) the clinic at 7:40 for my first appointment. I saw the most gracious ENT I've ever had the pleasure of meeting in my life. He was kind, he listened, and he educated me. I also got to see the inside of my sinus cavity by way of a T.V. screen. It was mind blowing. I truly cannot get over how kind, helpful and patient everyone here is. I feel SO well taken care of.
I was not ready for all of the great art the Mayo clinic holds. A whole wall of original Warhol prints, Chihuly sculptures hanging from the ceiling, and giant sculptures and paintings everywhere. A trip to the museum and doctor all in one- you can't beat that!
Today I also visited the lady doctor. After living 2 years with endometriosis, I was finally properly educated on WHAT the disease is, how it's treated (or not treated), and how to live with it. He spent a good hour and a half talking with me, answering my questions, educating me and REALLY considering all of my medical history as he was trying to find a treatment protocol. As I left he even gave me his card and told me to e mail him if I ever had any questions. Why aren't ALL doctors like this?! I mean seriously, he ADVOCATED for me. Most of the time when I visit the doctors it is an uphill battle trying to get them to listen to what is going on in my body. I walked out of that appointment with a smile on my face because I felt understood. It was a great feeling.
Tomorrow I have several more appointments, and a few tests. There is still no clear picture at what is going on and causing so much trouble in my little body. We are very thankful that we were able to get a Neurologist consultation bumped up from Friday to tomorrow afternoon! This was a big prayer of ours yesterday that has been answered! It seems like this appointment is going to give a lot of insight into some underlying issues I am having.
I have gotten so many encouraging e mails, texts, phone calls and messages from you all. I cannot tell you how much it means, and how much your prayers are lifting my spirits.
As mom and I were walking out of the clinic this evening (and heading to a wonderful Gluten Free Restaurant) I told her that I felt like I had spent a day at church camp/Disney World for sick people. She couldn't agree more.