My Diagnosis Story: From The Archives

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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.

(my mom looks a bit like little red riding hood- but I'm sure mom's a lot cuter than she is:) 

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. 

Um. DELICIOUS. 

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. 

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. 

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. 

Hello, World!

I can't believe it is already Thursday, and I've yet to fill you guys in on everything that's transpired here the past few days. After learning so much, being given so many new "labels", my mind and heart have a hard time seeing it all written down in front of me on this space.. making it known.

Our weekend was so low key..which was wonderful. Saturday I recovered from the hectic week before , and kept my nose glued to my new favorite series, Outlander. If you haven't read them I HIGHLY suggest you do! It's been so nice to have a little fantasy get-away in my mind that I can transport myself into when I get overwhelmed by everything going on in doctors appointments.

Sunday we attended the church that hosts the House of Compassion, went to eat with the sweet lady who runs the place here (who lived in Asheville, NC for 20 years! When she told me that my eyes lit up and I wanted to hear everything she had to say about living there.. since it's my dream to live there someday too!) and we walked in the cold to visit some antique shops.

Monday was another free day away from appointments, so I spent the day taking care of some business things, reading and watching the snow fall outside. 

On Tuesday I started my appointments at the Fibromyalgia Clinic. Tuesday was the initial exam and uptake to test whether or not I had fibromyalgia. Sure enough, I do. 

After several hours at the clinic we walked to an authentic Italian Restaurant who had an extensive gluten free menu!! I have just been so amazed at how many places here understand the importance of avoiding cross-contamination and helping their guests who have food allergies and intolerances. It's been really amazing. 

Yesterday my mom and I sat in a classroom and learned all about Fibromyalgia and techniques to cope and live with this condition. So much to learn.. so much to change.. so much to take in.  I am so thankful that Mayo educates their patients so well. I really do not know what I would do without that resource. 

We got back to the house late yesterday afternoon. I was able to skype with David last night.. I feel like during the days I just kind of go through the motions, not really taking everything in.. feeling wide-eyed and stunned. I don't really give myself the chance to internalize everything and "feel" the weight (and goodness) of it all. 

Today I have my follow-up appointment with my "team leader" doctor, and then another three hour class with more information about fibromyalgia. 

My mom was able to arrange an earlier flight for us home on Friday instead of Sunday. I cannot express how excited I am to get back to my little family of David and Dakota. So excited I feel like I could explode!