Journey Day 3&4: Learning, Growing & Feeling

I know, I went MIA for a few days. The journey at Mayo Clinic was fabulous but took a toll on me mentally and physically. For the first time in months, my ass fell asleep all by myself without any medical intervention. Tom said I passed the phone hand up in the air while typing a blog. This post maybe less comical then past as this entire process is as if I’m inspector gadget!

I must say the Mayo Clinic is truly impressive. The facilities, employees, doctors, and parking options while on-site are like nothing else I have seen. Honestly, it made NY and our hospitals seem like a dark hole. The staff and doctors were not rushing; everything was scheduled and properly calendared on an app, and it was down to the minute. The cleanliness was insane! Legit cleaning personnel were everywhere, and these magical signs would pop up stating that an area was now sanitized to utilize! I could go on because it was the medical version of Disney, but I will not bore everyone.

Day one of the testing didn’t start till the afternoon. Food left much to be desired in MN. Maybe we are spoiled since we live in NY and have every option at our fingertips! We returned to the same place we went to on day 1. However, this time, we tried their Pannekoeken…..yes, friends, a stuffed pancake! (see pic) This place was good and kept us full for hours till testing was over. If you are looking to move to MN and open a restaurant, there is a need for some NY-style good eats.

Testing went as expected, going back and forth to different hospital areas via their lower-level tunnels called the “subway.” Threw Tom and I off at first as we were expecting to go down and see a squeaky subway rolling down tracks. Instead, we found beautiful stone floors, artwork displayed, stores, pharmacies, food, Starbucks, and more. The views from the upper floors were also lovely, so as I was being poked and receiving a lot of imaging, at least there were scenic sites. After the testing, I was beyond finished and ready to call it a day.

On day two, I woke up to a surprise of more testing and a doctor's appointment. Unfortunately, I must not have had enough water and had to be prodded 4 times before a vein started working. So, now the bruises look as if I am an abused wife. I took a photo as evidence to support my non violent circumstances! I was beyond anxious about meeting the doctor, but after just five minutes in, I felt like, shit, I was in the right place. He was calm, cool, and collected while spending over an hour with Tom and me. (Not sure I have ever had that happen in NY; they are in and out already thinking about the next patient while talking to your ass) Once again, we were told that I am the rarest of the rare with how I am presenting and the type of Sarcoidosis, Bone and Bone Marrow. He clarified that nothing about this would be easy and encouraged me to think one day/week at a time until we could get out of the critical stage. Then, once we have done that, and I feel I can live stable without feeling as if my body is failing daily, we can start thinking 6 weeks at a time and so on. That put it into perspective for me and was a little shock to the system regarding reality. Mayo Clinic has called for ALL my prior testing and pathology reports, which will be re-tested by their facilities and technologies to confirm the diagnosis. Due to the rarity and way my lesions are presenting, Mayo feels it's imperative to ensure that there is nothing else that went unnoticed or changes the treatment circumstances.

The kicker is while there; I was diagnosed with another side effect, can’t take me anywhere! He was able to confirm that the meds have given me oral thrush, which is causing disgusting cough symptoms with a beautiful white, like snow, mouth/throat, so guess what?! I got another med to take daily …..my body is filled up with pills from my head to my toes. Soon, pills will be my source of food.

After a long emotional day, yes, tears were shed, of course by me, the result is that I have a good team working to help figure this out. There is a plan, and right now, it is time to focus on my mental health, as well as holistic options, on the side. I will continue the current path of meds and treatment, then head back to Mayo Clinic in late January or early February to review the additional testing and meet their rheumatologist.

We ended up at the airport 3 hours early, as our flight back to Newark airport was super late. I was trying so hard to hold in my cough, even sitting down and doing a nebulizer treatment at the airport. I got some strange looks for sure, but you know what? Would you rather see me do this or hack all over you on a 2.5-hour flight? Come on, let’s use our brains here. Made it home at 2:30am and passed out! Back to work today…. life goes on, and I keep pushing up the mountain, can't just give up…. right?!