A New Kind of Home Sick
Or vacationing while chronically ill
As my first full day back home in Kansas City comes to a close, I just wanted to send a quick update. As many of you know, Jeremy and I just returned from what I’ve been calling our “East Coast Tour.” I wonder if I should have called it our “Mid-Atlantic Jaunt” as many friends in other parts of the East Coast were rightly confused and wondered why we had passed them by. This was the first time that I got to see my parents since April and had not taken any kind of meaningful break since our honeymoon last October.
Since traveling takes a lot out of me, and because we would need to make multiple stops, Jeremy and I decided to lengthen our trip, to allow me plenty of downtime throughout. We flew from KC to Baltimore on September 5th and spent a few days outside of Elkton with my mom and Kevin. On September 9th we headed up to Wilmington to spend some time with my Dad, Darla, and Grandma. September 14th we took the train up to New York to visit my brother Ryan, and sister-in-law Lauren. I checked in with each respective grouping of family to set expectations; I go to bed early, I won’t be up for doing much away from the house, my energy level is low, etc.
Despite all of this careful planning and mindful work to watch my health and my numbers each day, I got knocked off track. Particularly towards the middle of the trip, I experienced a significant increase in my orthostatic intolerance, such that I could not be standing for more than thirty seconds without my heart rate skyrocketing to above 100 bpm. I spent a lot of the trip physically exhausted and incredibly frustrated. For those of you who have been following since the beginning, the most troubling parts was that my HRV has dropped significantly and stayed there for over a week now. I think this means that after moving from Phase 1 to Phase 2, we’re back in Phase 1 again. I wish I knew exactly why, but I don’t. During a visit with an old friend back in Delaware, I said that this whole experience was like a “Choose Your Own Adventure” where I don’t get to pick anything. I asked what you would call that and she answered, “A nightmare?”
On the last night of our trip, it had been raining all day and some nasty storm clouds were rolling in to continue the deluge. In the break between the fronts, a beautiful rainbow appeared. We watched it grow from just a little sliver, to a full arch, and then with hints of a second rainbow outside. The next morning, I sent this picture to a few friends, with the text, “Look for the beauty in the storm.”
So we fight on. One day at a time. We got from Phase 1 to Phase 2 before and we can do it again. I am looking for doctors who specialize in POTS and hEDS to see if we can find more answers.