What a world it was to walk into Mayo Clinic, coming from small town Idaho. The place is bigger than my elementary, middle, and high school (all of which are in ONE building). Even just based upon appearance I immediately felt confidence in the facility. However, this place was huge, and upon first stepping in, it should have been very over whelming, yet there were people to help everywhere you looked. We walked up to one of the help centers and someone kindly gave us exact directions to get to where we needed to go.
My first appointment was just a scheduled time to be there and register. Meaning, give them my insurance card, drivers license, that appointment was at 7 am and my next was at 9:30 so we went back to the hotel, and I power napped. I was fasting so I was cranky.
Back to the clinic for my 9:30 appointment, this was the real deal appointment. I was lucky enough to be placed in the care of one of the top neurologists in the country. I didn’t know much about Dr. Goodman going in, Other than the fact that he knows his stuff.
He walked into the room at 9:29, and did the interview and exam 100% by himself. He was thorough and you could tell just by watching him how brilliant he is.
I have dealt with a lot of doctors over the last 10 years and I have grown to realize that the good specialists are the ones that quietly stew in their brain and don’t have time for chit chat. However, I was pleasantly supported by Dr. Goodman’s bed side manner.
Dr. Goodman is a kind and brilliant man, and from the moment I met him, I had all the confidence in the world in him.
He did his exam and then sat and had a conversation with me. He asked “first I want to know about you, what do you want out of this visit?” I simply stated “I want to be 24 years old and feel like I’m 24 years old, and I will do whatever it takes to get closer to that.”
He said “alright, I’ll tell you what I see but first I want you to hear me say that I am validating your symptoms and I see clinical proof that something is going on.”
There aren’t words to properly explain the validation he gave me in that moment. For 10 years I have been kindly (and sometimes not so kindly) told that I’m crazy, that my symptoms are clinical manifestations of mental disorders. I have been told I have depression, ADD, bi-polar disorder, PTSD and flat out told I’m a hypochondriac. When you are told all the time that you are crazy, it is damn hard not to believe it. I have been on 4 different types of antidepressants. When I flew to Phoenix I was on three different antidepressants, and honestly thought that would be my life forever. (Happy to report that I have successfully transitioned off of one, and will begin working on the other two).
Anyways, following that appointment I had to continue to fast until another appointment at 2:30. This appointment was the reason for fasting. This appointment was an appointment for a pretty big test, it took about two hours. This was a test to test my Autonomic Nervous system, so my sweat and hormonal responses to certain stimuli. I was strapped to a table and first they tested my sweat response by putting sensors on my skin, adding some acetylcholine (neurotransmitter) and then conducting electrical stimulation to the area to see if I would sweat. Not going to sugar coat it here, that test was a bit uncomfortable, but it was quick and honestly I would take days of getting electrocuted if it meant someone would give me answers. Next I did some big in hales and exhales timed with a machine, then I did a forced exhale with back pressure again timed with a machine, and the final test was a tilt table test. If you aren’t familiar with a tilt table test, basically you are just secured to the table and they take you from laying to standing and measure you vitals. Super easy, and very routine diagnosis for POTS.
After that I was done for the day, it was about 4 pm and I was finally able to eat and have a bit of caffeine. We took the rest of the day to explore the area and then had dinner at Whole Foods (a health fanatics dream land). And then headed back to the hotel for some sleep.
The next morning my appointment was at 9 am. This was just a lab appointment to get some blood draws, and by some, I mean a lot. Following the blood test I could drink little bits of water, but needed to remain fasted for another test at noon. This test was to determine my vital signs and hormonal responses to stimulus. This one was pretty easy, I got to sleep for 30 minutes and then I stood for 10 minutes. My vital signs were measured and blood was drawn at each step (yes day 2 consisted of a lot of blood loss). Following that test I was allowed to eat, and most importantly have some coffee. My sweet nurse had heard me say earlier how the worst part of fasting was no coffee, so they had coffee waiting for me as soon as my test was complete.
The last thing to do that day was get my holter monitor on for the next 24 hours.
I am in the middle of, and was also at the time in the middle of, doing a big fitness program so I asked if I was allowed to workout with the holter on, they said “You can do anything you want to but we don’t want you to sweat.” Perfect, I don’t sweat anyways!
We went back to the hotel, I got my workout in for the day, and then we headed out to find a trail to hike. I was not about to let the beauty of Arizona go to waste, so we hiked (slowly, because I was seriously lacking blood volume). And then back to Whole Foods for some dinner.
Day 3: The only thing on my agenda was to start my 24 hour urine test, and drop off my holter monitor. So this day we were pretty much free to explore Phoenix. One of my best friends happened to be in Phoenix at the same time we were, so we met her and her family at the zoo. It was a perfect last full day in Phoenix.
Day 4: I just had to drop off my urine and then head to the airport.
Leaving Phoenix was tough. I became so attached to the city. It is the place leading me to answers, and I loved the sun. I honestly didn’t want to leave, but I left knowing with all my heart that we would be back.
Right now I still don’t have the answers, because I have to go back for a follow up to get those answers (like I said, I knew we would be back). However, even without answers; my heart is so at peace. I feel empowered by my limitations, and validated in the fact that those limitations are real.
So I guess for now, this is all I have until my next trip to Phoenix. But, I do want to say; if you are struggling with something, or you are not getting the answers or help you deserve, I HIGHLY encourage you to reach out to the Mayo Clinic network. They are amazing, and they will help.