After the plasmapheresis failed, it took awhile to find the strength to figure out if it was even worth continuing this journey to determine and ideally, fix whatever was wrong with me.
My loved ones and my work were the incentive I needed. I advocated (even after first being rejected) for a work-up at the renowned Mayo Clinic in Rochester.
As a small business owner, I’m self-insured with a high-deductible plan. Mayo seemed out-of-reach financially until family and friends convinced me to start a GoFundMe. I was extremely hesitant because asking for help is hard and because my condition is so complicated, the written words had to come from me. I knew the burden my health had to be putting on Tom and the girls and the expenses from years of medical tests, treatments, hospitalizations, medications and more – were astronomical.
We asked and the love, prayers and financial help of family, friends and my beloved community helped make a trip to tap into the expertise of the teams at Mayo possible.
Highlights (and Low-lights) of Day One
- Neurology exam – the doctor isn’t convinced I have Stiff Person Syndrome.
- By early afternoon – I had an unexpected breakdown in the middle of Mayo Clinic – weeping and sobbing, afraid that my journey would result in me going home with no answers and no hope. Wisely called my fella after about 20 minutes, who talked me back into the game.
- Went for the Ear, Nose & Throat (ENT) appointment, which included a test where they stick a video camera up your nose and down your throat. I laughed and told the doc I wouldn’t have shown had I known that was in the cards!
The specialist found no signs of vocal cord dysfunction, which I’ve twice been diagnosed with (and done all the vocal exercises for) as the cause of my chronic cough. Next, a closer look at my lungs and chest muscles.
Day Two at Mayo
- Lots of blood work.
- An MRI of my lower spine where they use an IV with contrast. I usually get anxious during MRIs but this time, I took our daughter’s advice and our pal, Kristin Massoletti – who had just sent me breathing exercises – and did some mindfulness of breathing meditations. I fell asleep in that tube!
Our oldest daughter packed a letter a day for me, which brought me such joy. I see chocolate seems to be a running theme in her tips for me (she knows me so well!).
- What does a keyboard have to do with the Mayo Clinic? Well, that’s part of my otorhinolaryngology appointment! Yep, go ahead and Google that. I cough, my throat goes into a spasm and tightens up, which makes my voice hoarse. The doc gave me GREAT advice to help loosen those muscles… fun stuff like whistling, gargling water, blowing bubbles into water with a straw.
- Thought I had a positive day until I went to dinner and at the end, I mentioned to the lady next to me that I was getting up and it could be a bit awkward (the tables are all along a booth and pretty close together) with my muscle spasms. She struck up a quick convo since we were both there for Mayo and out of nowhere, I broke down crying again… in a restaurant. Clearly, this is more emotional than I expected!
Day Three at Mayo
- What a doozy. Started the day with chest x-rays and pulmonary function tests – again, trying to figure out why I’ve been coughing for seven+ years.
- A 4:15 p.m. MRI of my upper arm. My pain is specifically in my upper arms (triceps) upper legs and lower back. This was my first “extremity” MRI – with contrast as well, so the IV. I thought it would be easier than the brain and spine ones but boy, I was in that tube so long and despite my breathing exercises, I got super nauseous. They kept me afterwards a bit because the color had washed right out of me but by 6 p.m., I was done – in every sense of the word – for the day.
Made it back to my room and ordered yogurt, granola and banana (which weren’t on the menu) – thinking they wouldn’t do that for a dinner room service. I was so grateful when Jaime delivered my special order with a smile, that I started crying again. He offered to give me a hug, which I gladly accepted and said anything I need, just give them a ring.
Final Day at the Mayo Clinic
- Consult with a movement specialist who really needs a firm diagnosis to make recommendations. I was like, don’t we both?!
- Movement Disorder Lab evaluation.
- The dreaded Electromyography (EMG). First, they use electric shocks to measure nerve responses and then, put needles into the muscles to essentially “listen” to the activity. I’ve had two in the past, and they were the worst! This one wasn’t too bad – not pleasant – but not awful. The doc used a needle for a child for me, which is part of the reason I’m sure. And… I only cussed once during the session, which felt like a big win! Those results were normal.
- The pulmonologist says my lungs are clear, so no pulmonary cause for this cough.
My neurologist is out, so I leave Mayo – no closer to knowing my truth. It is crushing. I know that’s tough for people to understand – but I desperately need confirmation of a diagnosis and a path forward are desperately needed for me. I feel ashamed that the next time I see you, you may ask how it went and what I found out, and I’ll have to answer, “I don’t know.”
As one renowned doctor in Denver (not my current team) once said to me, “This is not going to kill you, so why does it matter exactly what it is anyway?”
From Invisible Illness to Progressive Disability 