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Revisiting Mayo Clinic : My diagnosis Story

Revisiting Mayo Clinic : My diagnosis Story

The following series of posts were written 3/13/2013 in Rochester, Minnesota at the Mayo Clinic. I am in the process of booking another hopeful stay at Mayo Clinic in Jacksonville, Florida and remembered I had these somewhere deep in my blogger archives.

I’m honestly just coppying and pasting these here for myself to read later, and for those of you who are interested in where I was in my life when I got diagnosed with Ehlers-Danlos Syndrome. I love hearing my friend’s journeys with this syndrome, and it is rare that we have first-hand-accounts of how this impacts us and changes us as we navigate our bodie’s uncertainties.


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Here's the deal. I am not a storyteller, although I really wish I was. David always tells me that I put way too many details in my stories, I lose track of my main point, and then I always kill the punch line. Annndd he's right on the money with that one.

I envy those bloggers and writers that can captivate you and reel you in with their magical words, making trips to target or baking a cake seem like the coolest experience of their lives. I'll just go ahead and spoil the ending for you, I'm not one of those writers.

But, for the next week I have decided to turn this space into a bit of a story book, capturing details of my days here in Rochester, Minnesota while I am at The Mayo Clinic. I want to look back and remember, and I want you (especially my best friends, family and david) to know what's going on here.

And I know a lot of you are new here, and even those of you who have been reading for a super duper long time.. and even some of you who are my real life friends don't really know the whole story about why I am here. I do not like to talk much about details of my health and all that mess because:

1. I don't want you to feel sorry for me

2. Most of the time I do not even know where to start

3. I will most likely start crying

4. I don't know how comfortable I am with being THAT vulnerable with people- you know, just putting it all out there.

5. I  REALLY REALLY REALLY hate being "that sick girl".

As much as I hate it, it's where I am. I AM "that sick girl". Which is why I'm typing this as the snow is falling outside, laying on a bed provided for me by a loving church.. in a house named "Compassion".

Thursday night I got a phone call from my mom asking if how I'd feel about going to the Mayo Clinic. We'd thrown those words around a few times over the past 3 or 4 years, but nothing ever came of it.

My initial reaction was, I CANNOT miss another week of work because I am sick- we need the money, I can't allow myself to lose another job because my body just wouldn't cooperate. A few minutes later David walked in the door from work. Over sobs I told him what was going on. He immediately called my mom and told her I was going. I didn't need to worry about money, God would provide..my health is the most important thing. And since I am getting cut off my parent's insurance when I turn 26 next month, this is kind of our last available option.

At this point we didn't have an appointment, a place to stay, or plane tickets. Over the next 24 hours God opened doors for us to get the last 2 seats on a flight here this morning, and we were given a 9:15 Monday morning appointment with a specialist at the clinic.

My mom said she had called the receptionist RIGHT after someone had cancelled.

Most of the time the wait for something like this is over 6 months. God provides.

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SO at 4:30 this morning (lousy timing for daylight savings!) we boarded our plane for Minnesota. 

After our shuttle dropped us off at our final destination, we were stranded in the cold for an hour..which  turns out to be a pretty funny story.. but like I said I'm pretty bad at telling stories so I'll save you the details.

After a fiasco we were finally let into The Compassion House and were able to get our bearings. 

Another sweet lady staying here (who has been here for 6 weeks with her husband after he got a bone marrow transplant) drove us to a wonderful pizza place that served gluten free vegan pizza!! I had to take a picture of it because it is not often that I get to go out to eat and taste something as awesome as this pizza. 

Anyways, we are within walking distance to the clinic so we slowly walked through the pedestrian subway that runs underneath the clinic and connects all of the many buildings.. taking many stops so I could rest. We braved the cold and walked another few short blocks back to our house. My mom and I ended the night with some leftovers and talks about what to expect in the coming days. 

It has been such a long day, and I am having a hard time writing this because I am just. so. exhausted. 

I wish David was laying next to me as I type this. He has been such a steady and giving caregiver to me since we got married, and I would love it if he were able to be by my side for this whole experience. However, my sweet mom has tirelessly and selflessly taken care of me through 10 plus surgeries, countless doctors visits, and years of pain and sickness. I am so thankful to have parents who are willing to go through such lengths for me. 

And I am so thankful for you. Thank you for the texts, the calls, the e mails, the tweets and all of the love that you have and are giving me. While I feel a huge weight of discouragement, I feel so encouraged by all of the prayers that are being lifted up on my behalf. 

After years and years of doctors blank stares and dismissals, I am halfway expecting the same experience here.. but the other half of me is quite hopeful. 

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

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

Well Hello Again

Well Hello Again