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!