Looking for Answers

Let's go back 2 years ago exactly.  We'd just moved to Fort Collins a couple months before.  Nate was still adjusting to the move and starting school.  He was waking up a lot during the night which meant I was up with him.  And while I would be up with him in the night I would get these weird, severe stomach pains. I would think that's odd, but would shortly fall asleep from sheer exhaustion.  But it kept happening.  And not too long after that, my stomach pain started happening during the day.  And then it was all day every day.  I finally went in to see my doctor.  And so began a year and a half of medical appointments and tests.

First it was just imaging to be done.  But when that didn't tell the doctors much, we had to dive deeper.  Over that time I had ultrasounds, blood tests, CTs, endoscopies, stomach injections, second opinions, HIDA scans, trial medications, FODMAP diet, barium swallowing tests, MRIs, hormone therapy, etc.  I even had a colonoscopy. And exploratory surgery.

All this time my pain was just getting worse and worse.  I got to the point, I was constantly taking advil and tylenol. And I was still in pain.  My doctor even put me on pain meds so I could sleep.

What exactly had my doctor's figured out from all of this?  Not really anything.  No diagnosis. No cause.  No answers.

Luckily for me, I happen to know a very good doctor at a world renowned hospital.  Doug went to work finding me a doctor to go see at the Mayo Clinic.  We checked with our insurance and Mayo Clinic was in-network with our plan.  I didn't even need a pre-authorization.  I sent off my medical records to Mayo and they determined they would grant me an appointment.  So I booked a one way ticket and headed to Minnesota.

My first appointment with my doctor was on a Monday afternoon.  My doctor at Mayo was wonderful.  She went over everything and made a plan. My doctors at home had been thinking my pain was likely neurological based on my test results and my symptoms, but they didn't know what to do after that.  My Mayo doctor agreed it was likely neurological, but there was still a few more tests she wanted to run.  The Mayo scheduling team is amazing.  I had probably 6 things my doctor wanted done.  The scheduling team took my list and scheduled my appointments for the next couple of days.  And then I was to see my doctor again to look at results and make more plans.  Things that would have taken weeks and months to schedule and wait for an opening we're all booked together!  Mind blowingly efficient. I literally walked out of that appointment and headed to 2 more appointments that had just been scheduled that day.

Most of these tests were pretty painless, except for one.  My doctor wanted me to try trigger point injections again.  I had tried them previously, but my doctor wanted them done again under the direction of ultrasound.  Trigger point injections are anesthetic injections into the spot that hurts the most.  The idea is that if it's a muscular thing it will numb the muscle.  The doctor doing the trigger point injections decided to do two injections.  The first one was terrible.  He really made sure to spread the anesthetic around with his needle, poking in and out.  I thought seriously about not letting him do the second one.  I wish I would have.  The second injection was horrendous.  I went to leave the appointment and almost passed out.  They made me lay around for 10 minutes and then walked me down for Janet to pick me up. As soon as I was in the car I started bawling.  I was in so much pain.  I couldn't even sit up the pain was so bad.

While I was at Mayo, I went to a pain management class as part of my treatment plan.  The idea around the class was that if my pain was neurological in nature, then we need a different way of thinking of it and treating it.  That whole idea and class changed my trajectory.  It was so reassuring to hear that even thought my pain was neurological, it wasn't just in my head or I was making it up.  The nerves in my stomach are overly sensitive.  Nate has hypersensitivities.  His hands at one point were so sensitive he wouldn't touch food to feed himself.  It was just too overwhelming.  Once I was able to associate Nate's hypersensitivities to my stomach pain so much more made sense to me.  The class was a small group so I was able to talk with others with similar neurological pain.  About feeling crazy that there is no physical reason for our symptoms.  About feeling scared and angry.  About how the medications made things better and worse. About how can we treat something neurological in nature.  They had a whole treatment regiment of what to do to make things better.  It finally felt like there were some answers and some hope of getting better!

During the class, I met a man named Curt.  He had a really interesting story and I really enjoyed talking with him.  After class, we continued to talk.  This poor man was so alone.  He was divorced and had already gone to several other hospitals to try to figure out what was wrong with him.  I couldn't imagine doing all I was doing to get better without the support of my family.  Brad was supporting me from home, my mom was watching Nate and Evy, and Doug and Janet were there everyday after I got back from the hospital.  Just before we said our goodbyes, Curt said to me, "You know about rewarding your kids positively.  You deserve it too."  That is certainly the nicest thing a stranger has ever said to me.

I spent a lot of time at the hospital over the week I was there.  Sometimes I'd have an hour or so before my next appointment.  I loved going to the lobby to people watch.  There were patients who would come and play the grand piano in the lobby.  Some of them played so beautifully I didn't mind that I had to wait for my next appointment.  It's amazing how many people are at Mayo.  People from all over coming to find answers.  And so many doctors, nurses, and staff who were so caring with everyone.  It's said that people from Minnesota are the nicest people and everyone I came in contact with at Mayo were beyond kind and caring.

On Wednesday afternoon, I had another visit with my GI doctor.  After the tests, she was now confident in giving me a diagnosis. I was diagnosed with central sensitization syndrome (CSS.) Basically as explained in the pain management class, my nerves had become hyper sensitized.  They still couldn't find anything on my tests that was wrong, but there is no test for CSS.  You basically rule everything else out.  It was reassuring to hear that even though they couldn't find anything wrong, this was definitely real and based in my nerves.  My brain wasn't just making this up.  The pain was real and had a real cause in my body even if there wasn't a test to show it. We talked about things to do and what to do from there.  My doctor did decide to do a couple more tests the next day just to follow up on a couple things, but besides finding something on those 2 tests then she was confident in her diagnosis.

Thursday was my last day at Mayo.  I had a couple more blood tests and then an MRI.  After seeing that everything was fine on those tests I was free to head home.  

But not until after a little fun.  While I was in Minnesota, Aunt Carolyn and Uncle John came to stay with Doug and Janet too.  I adore these two so it was a nice surprise to learn they would be in Minnesota the same time I would.  On Friday, we had a grand adventure.  First, was the Eagle Center.  I've never been so close to eagles.  There wasn't a barrier between us and  it felt like I could reach out and touch them. We then continued up the cities for the Minnesota State Fair.  Now if you know Doug, you know that he loves a fair.  We did all the things.  Floppy earred bunnies, the horse show, Tom Thumb donuts, snow cones, farm animals, 4H displays, lemonade.  This was also my first experience with cheese curds.  It did not disappoint.  

Then it was finally time to go home to my family.  After so long apart we were so excited to see each other.  Both of the kids had been missing me a lot and Brad seems to have missed me too.  It was hard to be away from them for so long, but it was worth it to finally have answers.  Nate and Evy had so much fun with my mom. And I couldn't have been better cared for then by Doug and Janet. I'm pretty blessed with this family of mine.