When Sheryl Crow talking about that winding road, I only just enjoyed the song because it was very metaphorical. However, after going to this process on my road to Mayo Clinc, it became literal. Now that is has been realized, I am trying to figure out where to begin.
I had a confirmed appointment March 2020 but, you guessed it, the rona rolled out in the United States and my appointment was cancelled..sigh. Was I devastated? YES. I waited over a year for my appointment! At that time, I felt that I would never get to see the doctor. My old Neurologist, who specialized in Dysautonomia, stopped taking my insurance and my Cardiologist started to treat me as nuisance so I kicked him wayyyyyyy down the street. My caring PCP was sympathetic but not knowledgeable when it came to my illness. Honestly, I felt abandoned or really just seriously inconvenienced. Believe me, I am writing this post 18 months in the future so yes, I know now that this is a serious pandemic, but I felt crushed at the time, because I waited so long to get to that point. The one shining light was that in the same month my job allowed us to work from home. Anyone dealing with Dysautonomia knows that this is like finding the Golden Ticket! I was really feeling worn out and sincerely felt that I would have to be on full disability soon. Thankfully, I am not.
Fast forward to May 2020. I was out for a walk in my hilly complex. Yup, I surely was. When I received a call from the clinic!!!!!! I needed to collect myself because I was excited and that is Dysautonomia no-no. So look, the person in the office said the doctor was starting to see patients and I could come in two weeks!!! Insert more excitement. You needed to see me at that moment. I was sweating on the sidewalk, my heart was racing from the walk AND the call and my mind was trying to keep up. At the same time, I was trying to keep myself calm so I wouldn't exacerbate my symptoms. Initially, it was a five-day appointment with testing each day (morning and afternoon) and an office visit on Friday. This time it was condensed to three days with the tests all day for two days and office visit. Not ideal but with covid, you couldn't come in and out like that for so many days.
For the initial visit we had flights booked so when we cancelled, we received credits from the airline for future travel. We used those credits for the new tickets and they ended up being MUCH cheaper for obvious reasons. Who is really trying to fly during a pandemic...besides me. The "we" included my daughter. Once I got back home after the walk, the planning was back on. Yes, COVID was raging, people were home for their safety but I needed to get on with my life. I felt like I needed this to get some answers but I have been stuck in limbo for years. So I decided to go after much thought. My daughter was there with me in support. I really needed her and I so happy that she was able to drop everything to be there for me.
Stay Tuned for Part 2 ✈️✈️✈️