Mayo Clinic Pain Rehabilitation Center: The journey begins

April 2018

After being diagnosed with Ehlers-Danlos Syndrome (EDS), I asked my geneticist if she could make a referral for Mayo Clinic's Pain Rehabilitation Center (PRC). My mom had discovered PRC about two years ago when there was an article about a mom and her two daughters in the church newsletter. Being the wonderful mother she is, my mom set out on a path to get me into this program. I'll be honest: I heard about this program and I thought it was a load of crap. There was all this information about breathing differently, and I did not understand how breathing differently was supposed to get rid of my level 8 chronic pain. However, what I had been doing for the last 7 years clearly wasn't working, and with there being no real treatment for EDS I decided to give this program a chance. After all, it's at Mayo Clinic and they seem to know what they're doing there (at the number 1 ranked hospital in the nation). So my geneticist made a referral and told me the process of getting approved had started. A month later and I had still not heard from Mayo. One afternoon while I was "studying" in the computer lab I called Mayo to see where the status of my referral was. Let me just add that I called them in a computer lab filled with students who were actually studying without even thinking about them overhearing me (oops). After many transfers, a friendly guy at Mayo told me that psychiatry had my case.
Hold up...they think this is all in my head. That was my first thought. After a doctor at another great hospital was convinced my GI troubles were in my head, I began to panic. I tried to remain calm while I asked the guy why psych had my case. He informed me that the pain rehab center was run through psychiatry. Again, that made no sense. Shouldn't a pain rehab center be ran by pain doctors?! I was already doubtful of this program, but this was the icing on the cake. I found out that a nurse was going to call me for a phone appointment in three weeks to evaluate me for the program. I still didn't know what to expect, but I just trusted the process.

Time passed quickly until the day of the phone call. I was working on a group project with my classmates and told them that I would need to leave early so I could be ready for a phone appointment. I sat on a bench in the basement of a building on campus waiting for my phone to ring. As I waited, I found myself amused at the fact that the other students on campus were starting to get ready for Dead Week and Finals week and here I sat, waiting to hear from the Mayo Clinic. My phone rang, I answered it, and began a conversation that lasted over an hour with a nice nurse. We went through my entire medical history, all my medicines, everything I've been diagnosed with, what all I've tried for my joint pain, history and family history of substance abuse or suicide, concerns I have about school, and many other topics. After giving me more information about the program, the nurse said that she thought the 17 day program would be better for me (as opposed to the 2 day crash course). Then I had to talk with scheduling. They could get me in as early as May 17th which meant I would finish the program on June 11th. I confirmed it and then called my mom crying. I was exhausted, overwhelmed, and worried that I would miss my niece's first birthday party. With my time at Mayo booked and their insurance department working on making sure insurance would cover the program (we're looking at a very large number behind the dollar sign), I pushed it from my mind and focused on school.

The semester (probably the longest one of my college career) ended. I celebrated the majority of my classmates' graduation, packed up my cat and my belongings and drove home for the summer. I had started to tell people that I would be going to Mayo for three and a half weeks. The common response was something like, "Oh wow! You got an internship or a job there?!" Imagine everyone's disappointment when I said that I was going as a patient. I would only be home for the summer for about two weeks before relocating to Rochester, Minnesota. I decided against working and instead decided I wanted to declutter. Everything. Clothes, shoes, books, everything. I didn't even start packing for Mayo until the day before we left. As "moving day" approached, I found myself full of mixed feelings. I was nervous. I had no idea what to expect; what would each day be like? Would I see first hand why Mayo has such a great reputation? Or would I follow my usual pattern of treatments not working? I didn't even know what I would be doing every day! Would they take all my medicines away? Is Rochester a safe city? Is there anything fun to do there? Would Roger (my emotional support animal) be okay in the car and in a brand new city? I was told I would need to come up with goals on my first day. My only goals were:
1. Get rid of my knee braces
2. Decrease dizziness
3. Wake up feeling rested
4. Have a consistent exercise routine
I wanted to go into the program with an open mind. No expectations, no preconceived notions.

Rochester bound!

The weekend before my mom and I left for Mayo, we visited my brother, sister-in-law, and 11 month old niece. By this point I had told my mom many times, "yeah I've decided I'm not going to Mayo." There were too many unknowns that I was nervous about. However, my sweet little niece showed me that Aunt Sarah needed to be able to keep up with her. After a weekend of watching her crawl, going for walks, and dancing around the house I realized that nothing will change unless something changes. I was exhausted and out of breath after dancing with her for three minutes. I had to turn back and get my knee braces when we went on a walk. During the day I was so tired and in so much pain that I didn't have the energy to play with her the way I wanted to. I'm only 22 and she was only 1...she was going to get way more active in the years to come, and I was determined to keep up with her. With this new mindset, generous donations from our church family, enough clothes, food, and personal items for 3.5 weeks, and Roger the cat, my mom and I left for Rochester on May 16th. After crying all the way to the interstate I tried to ease the anxiety in my mind. I tried to be excited for a new adventure as we drove past the exit to my university and I began traveling through a new part of Iowa (which was actually not exciting because Iowa isn't the most beautiful place to drive through). As we neared Rochester, my anxiety spiked. However, as our car arrived in Rochester, I actually began to feel excited. Navigating to our apartment was difficult, especially since I was so distracted by looking for the Mayo Clinic (I didn't realize until later that it was the huge silver building...duh). We finally made it: across the street from Saint Mary's Hospital--part of Mayo Clinic--was our apartment. Hospitals have been my second home for years now, and I was in awe of the huge hospital that would be right outside my door. We checked into our apartment, and it was so precious, like something you would see in New York. After getting settled in, we fed ourselves and Roger and my mom and I decided to walk over to St. Mary's to see the building where my program would be. It. Was. Beautiful. I am what you would call a self-proclaimed hospital nerd. I can find my way around a new hospital in no time and I always have to check out the gift shop and the cafeteria. The building were my program would be is separate from the hospital (but connected by an underground tunnel; beyond cool). Thankfully it was unlocked so I knew exactly where I would need to go the next morning. We checked out the atrium and my heart flew. It was stunning. Live plants, chairs and tables, a tall ceiling with a beautiful leaf scultpure, and overlooking the atrium where I would check in every morning. Not to mention the beautiful landscape around the building and the hospital itself. In my own unique way, I was excited to be at Mayo. I told my mom, "can you believe we're actually here?!" like we were at Disneyland or another great destination. I was still unsure of what the next three weeks would be like, but I was feeling more and more relieved. 

Look Ma, we made it!

The beautiful atrium 

I got to walk past this every day!

Fearfully & Wonderfully Made: Ehlers-Danlos Syndrome

May 2018

Hello new and old friends! I have recently reconstructed my blog as I want to spend more time this summer blogging. I just finished my senior year of college, and I have one more semester (The Survivor's Lap) to go! This year was definitely the longest and most academically challenging of my college career. Now that senior year is finally over, I've realized just how crazy and how much work being a full time college student AND managing chronic illness is. To me it feels like having two full time jobs...and that's after only two years of severe chronic illness. So to recap, when I came to college as a little baby freshman (I seriously looked like a child) in 2014 I was already managing celiac disease, IBS, gastroparesis, and gastritis. Freshman year was not exactly successful; I left with many mental health issues. Sophomore year my mental health went downhill quickly, and I adopted my precious emotional support animal, Roger. In November of my sophomore year (2015), I ate at a salad bar on campus and was accidentally cross-contaminated with gluten. About a week later, I realized my joints hurt. It started out as the "big" joints: knees, hips, shoulders, elbows. As time progressed, the joint pain spread to every joint and the pain increased. I started telling doctors, "if it bends, it hurts". I went to my regular doctor and then the process of getting referred to other specialists started. By the beginning of 2018 I had seen eight specialists and tried a truckload of medications, acupuncture, and steroid shots. Keep in mind, during all of these appointments and treatments I was also still a full-time student for the rest of my sophomore year, all of my junior year, two summers of biochemistry (barf), and half of my senior year. I think it goes without saying that I've learned to balance the two things pretty well. After seeing three more specialists, I FINALLY got a referral to the Department of Genetics at the major teaching hospital in my state. I saw a physical medicine and rehab specialist who said that I had hypermobility syndrome. Ever since I was a little kid, I've been super flexible and can bend and move my body in weird ways. I have a host of "party tricks" that I've been impressing or creeping people out with for as long as I can remember. The doctor said hypermobility can be associated with a genetic condition called Ehlers-Danlos Syndrome. My first thought was, "how do you spell that?!" followed by "yeah that test will probably come back negative also." However, as I did more research and learned more about Ehlers-Danlos Syndrome (EDS), it all started to make sense. In February of 2018, my mom and I drove on icy highways to see the geneticist. She had already reviewed my symptoms and called to get a family medical history. As soon as this nurse practitioner walked in the exam room, I knew I would love her. She talked to me for a bit and then felt my hand.
"I can tell by touching your skin that you have Ehlers-Danlos Syndrome."
Even though I expected it, those words hit me like a ton of bricks. For over an hour, we talked about EDS, the complications, and the prognosis. My immediate question was, if this is genetic why doesn't anyone else in my family have it? The NP explained that since there are no signs and symptoms of EDS in any of my living or deceased relatives, they believe one of my genes mutated while I was being knit together, a de novo mutation.
"You are the de novo."
Hearing this caused multiple waves of emotion. Knowing that the mutation started with me, the only other people in my family who would be at risk for having EDS are my biological children. I was relieved that my family members wouldn't have to worry about having EDS, especially my precious 11 month old niece. But I instantly started worrying about the qualify of life my future children would have. The geneticist encouraged me to not worry about the future, but focus on dealing with this diagnosis and getting through college.
My next question was WHY I have multiple food sensitivities, four chronic GI issues, and headaches/severe migraines. The geneticist explained that all my other conditions are caused by EDS, often called comorbidities. That was when it all clicked. Ever since I was diagnosed with celiac disease seven years ago, I could never understand why I kept being diagnosed with more conditions. This was all so overwhelming, but it brought answers, closures, and peace. After the geneticist left, I burst into tears because I finally had an answer.

So what is this EDS? Ehlers-Danlos Syndrome is a genetic disorder that affects connective tissue and collagen. The reason why all my joints hurt is because the collagen in the connective tissue surrounding each joint is very weak and doesn't function properly. There are over 10 different types of EDS. I only have the hypermobility type (often called hEDS). Some types of EDS can be life-threatening. Thankfully hEDS is not.

Trying to comprehend all of this has been difficult, I won't lie. I didn't understand why God, when He was knitting me together, threw in a genetic mutation. For a couple weeks I was so bothered by this and stressed that my sleep was terrible and I had no appetite. A friend encouraged me to read Psalm 139 where the Psalmist talks about how as humans we are knit together and designed by God Himself:

For You created my inmost being;

   You knit me together in my mother’s womb.

14 

I praise You because I am fearfully and wonderfully made;

    Your works are wonderful,

    I know that full well.

15 

My frame was not hidden from You

    when I was made in the secret place,

    when I was woven together in the depths of the earth.

16 

Your eyes saw my unformed body;

    all the days ordained for me were written in Your book

    before one of them came to be.

Reading this psalm started to transform my perspective on having EDS. Instead of being angry or ashamed that I have EDS, I followed Psalm 139 and praised God for making me so unique. It says in the psalm that we are "fearfully and wonderfully made" and God's works are "wonderful". When I told my brother and sister-in-law that I had EDS, the first thing my brother said was, "so you're a mutant?!" Some people might take offense to that, but I still find it hilarious! I'm learning to embrace my mutant self.

Yes, there are big battles every day. Yes, I am in pain the second I wake up and the second I fall asleep. Yes, I am nervous for what my future might look like. BUT...yes, I laugh every day. Yes, I have an army of family, friends, and classmates who have supported, accepted, and loved me no matter what. Yes, I find joy in the simple things. Yes, I have Ehlers-Danlos Syndrome but that changes nothing about my spirit and my soul.

It's Not Over Yet. Keep on keeping on,
Sarah :)