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Revisiting Mayo Clinic: My Ehlers-Danlos Syndrome Diagnosis Story 3/2013

Revisiting Mayo Clinic: My Ehlers-Danlos Syndrome Diagnosis Story 3/2013

I told myself that I would try to keep this updated every day while we are here.. but it's looking more like it's going to be an every-other-day deal. With the long, extremely full and busy days here, when we are able to come back "home" my brain is to tired to rehash things. Forgive me? 

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The past few days have been filled with more appointments, tests, snow, encounters with genuinely gracious and kind people, and lots of riding up and down in elevators.

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My day yesterday started with a consult with a Musculoskeletal Doctor. They have you put on these lovely shorts which are labeled "one size fits all".. we decided that means, " one size fits ALL-everyone in the room".ha.. And after wearing this lovely outfit, am thinking about starting a career as a fashion blogger.

So a little background history..I have had 5 knee surgeries since I was in middle school, tearing different medial bands in my knee (often times re-tearing the same ones) just by walking. I also have chronic joint pain in my jaw  (TMJ disorder) and extreme lower back pain. Thankfully, the x-rays did not show any damage in the structure of my joints.. which is GREAT news! However, the doctor did find some abnormalities in the ways my body bends and moves, so he refereed me to a geneticist to see if I had a certain genetic disorder.

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After the musculoskeletal consultation, I was able to check into my neurologist appointment. The main purpose of this appointment was to confirm or disprove many Doctor's suspicions of fibromyalgia as well as see if there was anything that could be done to treat my migraine headaches (I have had those since I was about 10 years old).

Since I have been here, I have had an important appointment(s) that weren't scheduled until April 30th. At that rate, my insurance would not have covered these appointments AND we would have not been able to stay long enough to get into them. I have been continually calling the scheduling office to try to get into these appointments sooner without any luck. Around 3:45 yesterday afternoon I sent out a text message to some close friends and family who have been praying for my visit here- asking that they pray specifically for this appointment to be moved up to a time where I could go. FIFTEEN minutes later I got a call from Jennifer, the receptionist, that they had an opening next Wednesday for the three day program.. and would I like the slot?! I immediately took it with tears in my eyes, knowing that God had heard that prayer and was working these things out for me.

Why do I always worry and stress so much, when He always has it completely under control?

With every physician consultation, I am amazed at how attentive each Doctor is to my needs.. my records and my overall education. They ask questions, they converse, they get to know me as a person.. and each time I leave they give me their card with their e mail address and phone number. I am always looked in the eyes and told that if I ever need ANYTHING I must call them. Seriously, why aren't all medical professionals like this?!

The whole Mayo system is pretty amazing. I am able to download an app on my i phone which gives me all of my appointment times, I am able to view all of my x-rays and lab results, AND am able to view each extensive write up by each specialist I visit. All of my information in one place.. for David to view, for my doctors at home to view and for ME to view.

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Yesterday we walked home in the snow, stopping at a little market to pick up dinner supplies on our way home. Mom walked to Walgreens (in the snow) to rent us some red box movies, and we took it easy for the night after the long day.

This morning we made it to the clinic by 7:30 and started off with another consultation. Again, I was met with another great Doctor who listened, and provided me with so much education and affirmation.

Afterwards, I was able to check in early to my Genealogist appointment and was there for a good 3 hours..reviewing family medical history and having an exam done for certain traits that manifested themselves in a genetic syndrome I was being tested for. I felt very humbled to be able to be where I was. Sitting in a room with someone SO intelligent, yet kind enough to provide me with resources to learn more about my new diagnosis. He even took the time to print me out a picture of a book that I needed to purchase to learn more about living with this fun new condition.

God has me right where I need to be. With Mayo being one of the leading researchers in the Ehlers-Danlos Syndrome, I could have not been in better hands. I have had so many "ah-ha!" moments the past few hours that I feel relieved to finally have a piece of the puzzle of my life explained to me.. but at the same time I am sad to know that I have a condition that is going to continually be with me for the rest of my life. I am sure I will write more about all of that later. I really don't know enough about it to begin to explain what it all is.

Tomorrow I meet with an immunologist, which will hopefully provide more insight into my chronic sinus infections, cough and general sickness.

I feel like there is so much more to write and share, but my eyes are growing heavy and my mind is tired. Thank you again for your constant prayers ( my hand drawn prayers!!), messages, and for opening yourselves up and sharing some of your stories with ME.

My mom and I will be here for another week, with a LOT more time to kill than we have this past week. If you guys know of any fun (low key) things to do in this area I'd love to hear!

I have also decided that I want to train Dakota to be my service dog so that I can take her everywhere with me. Do you think people would fall for that trick? Stick a service dog badge on her and call it a "allergy dog??".  I miss my little buddy so much and wish her and David could be here with me this week.

My Ehlers-Danlos Diagnosis Story Part 4

My Ehlers-Danlos Diagnosis Story Part 4

Revisiting Mayo Clinic: My Ehlers-Danlos Syndrome Diagnosis Story 3/12/2013

Revisiting Mayo Clinic: My Ehlers-Danlos Syndrome Diagnosis Story 3/12/2013