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07.17.2000 

During a very normal summer dinner, mid-bite I turned white and looked at Carolyn and said “I don’t feel well." I proceeded to head to the couch to lie down. Life as we know it has never been the same. 

Over the course of the next several weeks, horrible GI issues, and complete loss of desire for food and beverage was causing weight loss of 1-2 pounds per day. While I was in GI crisis, strange other features started showing up that were often attributed to rapid weight loss. 

After the initial battery of GI testing and no answers, we determined we needed next level care and in early October began the process of applying to The Mayo Clinic. 

My first stint at The Mayo Clinic in November 2020 (a 9 day stay in the middle of which we came home for 24 hours to see the kids) was an onslaught of pokes, prods, exams, and stupid human tricks. It was the first time that we were convinced that something horrible was wrong. Throughout the time at Mayo, negative test after negative test was “good news” and we became assured it wasn’t some of our worst nightmares. But it left us with few knowns. We did finally have a GI diagnosis - gastroparesis - but nothing to explain the cause. 

Along our GI journey, the stupid human tricks (AKA more tests) continued. In June 2021, I looked more closely at the collection of odd features that had appeared at the same time as my extreme weight loss in 2020 – but been buried down the list of priorities or explained away as part of the weight loss. There was profound alignment between my changes and many of the autonomic systems. We took this smoking gun of evidence to my primary physician and he sent in a priority referral to see a neurologist who specializes in the autonomic system. We miraculously were able to see him the next week and he confirmed an autonomic neuropathy, but needed to know more. More stupid human tricks and pokes. Majority of the testing came back as normal, but we picked up another couple of knowns including loss of small nerve fiber density, or small nerve fiber neuropathy. With no clear cause, we were put on a similar path of managing symptoms.

As time went on, our focus on my dysautonomia and searching for a higher order cause led me to take my eye off the GI issues. Weight continued to slip and symptoms worsened. We thought that we were getting connected with a more scholarly GI locally, but that relationship ended when he suggested that I should just eat more. 

Around this time, we had several interesting connections occur:

1. A friend a few houses away works in healthcare and happened to share my story with the owner of her company. He generously helped to facilitate a connection with a super smart, curious physician who spent hours and hours navigating my complex medical record. I've had several connections with him throughout 2022 and the greatest gift he's given Carolyn and me is a better means to approach appointments and how to be a better self advocate.
2. An amazing friend referred my case to the Difficult to Diagnose team at Northwestern Medicine and received a comprehensive review of my history and offered a direction that suggested the highest order cause was connective tissue related and suggested I connect with folks in Indianapolis.
3. I was able to secure an appointment with a physician in Indianapolis and, while he undiagnosed me with Ehlers-Danlos Syndrome, he had a suggestion to see Dr. Michael Cline at the Cleveland Clinic for my GI issues.
4. Three weeks later, we were in Cleveland and were thrown back into active GI work-up. We did a SmartPill study to understand full gut motility. With the confirmation of severe gastroparesis, it was recommended that I undergo a POP procedure - which I had in August 2022. 
5. We reconnected with our GI at Mayo and he's been an incredible advocate and sounding board throughout the evaluation of SmartPill results and surgical recommendations from Cleveland. He also made a referral to the autonomic specialists at The Mayo Clinic. We were seen in mid-August and were back the last week in August for testing - results and resulting treatment plan is forthcoming.

Seemingly in the middle of all this, in April 2022 I was accepted to and participated in the full time Pain Management Program at the Shirley Ryan Ability Lab. This immersive, multi-disciplinary program was intense - 8-4, Monday-Friday for 4 weeks...in Streeterville. So, I went from being a professional patient who only left the house for doctors' appointments to out of the house by 6:30 and home by 5:15 with a day that was packed with a combination of PT, OT, and Psychology that gave me tools to help navigate pain and also manage anxiety. My cohort of pain warriors were an amazing group of women who inspired me by their stories and motivated me by their gumption. 

So, that brings us current to the start of the blog - cheers!