:::::I have been writing this update for 4 days. With the constant run of upper respiratory infections I've been apparently entertaining (since it's either the same one that won't leave, or a carousel of it's friends- yes, I personify almost everything) in my too-small-to-entertain-head and work time fighting with my holiday-celebrating-family time it's been nearly impossible to get this blog out. It's not for a lack of trying though, and so I persevere::::::
I. am. amazed.
My appointment came & went on December 21st. I was thankfully so busy that day, I didn't feel nervous like I thought I would. I had just come from Daughter-9's Class Holiday Party after semi-sneaking away from an incredibly busy day at work; filling out the new-patient medical forms was being juggled with working from my blackberry. I proactively took copious notes the night before of everything I wanted to go over with the Dr. so all I had to do was go through the motions of the day (and fill out those damn forms). For once my anti-anxiety techniques paid off!
The fairly new medical office was nice, clean and comfortably decorated (meaning, it wasn't dusty or cluttered and didn't have that feeling of being decorated my Grandma). The staff was all very nice & they really put me at ease; already a huge difference from my previous experiences. Once in my room, I spoke with the intake nurse at length as to why I was there. She was very interested in knowing what EDS was and after I explained what it is and how it effects me (in small detail), she was shocked at how much pain I must be in (I was shocked that she had really listened to what I was saying and correctly realized how painful it is). I told her that I am, but that I am not looking for pain meds (I'm always afraid of being perceived as a med-seeker), I'm looking for a Dr. who is willing to help me become healthy. Her facial expression was open, soft & kind- was she understanding me? wow.
After a few moments (enough time to respond to 3 more work emails-> next year, nobody takes a holiday vacation but ME!), the Dr. came in. We introduced ourselves & shook hands. She looks to be around my age; very warm and polite. She sat at her desk in front of her computer, and I sat at the chair facing her; I explained again why I was there, and what I am looking for. She was familiar with the term Ehlers-Danlos Syndrome, but new very little about it. I told her what I know - which is a lot. When she asked specifically how I am effected, I pulled out my list of what I deal with daily. Usually, when the list comes out is when whatever Dr. is before me starts noticing the time. In this case however, asked follow up questions with each item, wrote notes & looked them up on her computer. WOW! After I was done with my list, I felt like a deflated balloon- I guess I had never had the opportunity to go through the whole thing, and at the end I realized that it is REALLY overwhelming! The Dr. was finishing up her notes and then asked what on my list was most worrying me, as far as starting with getting things checked out. Wha? We both agreed that I am a few years late on my next cardiology work up (my heart & I have a dark sordid past stemming from a huge fight we had when I was 10 days old and it tried to walk out on me), and I obviously need to see the GI Specialist. She also feels that a Rheumatologist would best fit the rest of my EDS needs as far as knowing what other specialists & treatments I may need. I am going to see this Dr. every month until all of my specialists are lined up and my care is in place. I already have an appt. to see the GI specialist on January 6. I can't believe how well this appointment went! I can only pray that the specialists she's referring me to take me as seriously as she did.