We live 5 hours away from the campus of University of Washington. The drive started off easy enough; of course Tom was refreshed after his 3.5 hours of sleep. We stopped about an hour in so that I could use the bathroom and Tom could get food. Apparently I got into the bathroom right After the family of 5 girls. By the time I got back to the car I was pretty sick. All smells just increased nausea. We got back on the freeway and I was reaching for my lovely vomit bag when Tom asked if the French fries were making it worse. I said yes and he threw them out the window. So sad. No one loves French fries more than me so I hurt for that loss too.
The rest of the drive was fairly uneventful with the exception of driving on a holiday and ridiculous traffic. There was no rhyme or reason. The Google maps showed me where the traffic was worst by highlighting the road in red, and the second we got past the sections highlighted in red the traffic magically cleared up. No extra lanes. No crash or construction. Just randomly we could go the speed limit instead of 3 mph or a standstill. Tom compared it to the same type of mystery as the ‘where is Amelia Earhart?’ I agree.
This tiny stretch of road took us two hours to get through, making our 5 hour car trip a 7 hour car trip. But we made it and that’s all that matters.
This morning we went to the University of Washington Medical Center. We started with a battery of autonomic tests. For good luck I wore my Wonder Woman shirt.
Look at this cool light cover above me.
First up, sweat test which is actually checking the small nerves to make sure they aren’t dead. They put a small well (which is like an upside down water bottle lid) against my skin then secured it tightly to my arm, leg, and foot. Then they injected acetylcholine into the well. She hooked wires up to small electrodes on my skin which activated nerves and opened up the pores. The wells measured how much I sweat, which wouldn’t have worked if my small nerves were dead. Spoiler alert: they activated well (technician explained the feeling as very similar to getting a tattoo) and I sweat like a champ. I did ask her if the acetylcholine was a type of acid, but she said that feeling was the electricity. Tom wanted me to hold a lightbulb and see if it lit up.
Next she hooked up the blood pressure cuffs, both traditional on the arm and also a tiny one on my finger tip (which was really cute). She had me do deep breathing tests next. I followed a light and inhaled while the light went up the line and exhaled while it came back down. Easy peasy, although it did make me pretty lightheaded.
We moved onto the Valsalva test, which I failed. It is basically a test where you exhale into a tube and hold it at a certain level, but it affected my blood pressure in a negative way.
The infamous tilt table was next. In preparation she told me about the way that she does the testing generally.
Cindy: In your previous test did you pass out?
Cindy: Ok, well I do my best to not make you get to that point and pass out.
Me: I love you
Cindy: I love you, too
True love in the Pacific Tower on the 7th floor people.
Cindy kindly tilted me up and gave me a play by play of my heart which was steadily climbing. At one point about 4 minutes in she seemed fairly started and told me she was laying the table down. I asked how high my heart rate got and she said it wasn’t that as much as my blood pressure dramatically dropping in the span of 2 seconds. After a little recovery I got to go out to find Tom.
We had some time to find coffee and food. I miss being somewhat evened out on meds. Being without them tends to make my brain less than stellar. I picked the wrong bagel. I wanted an everything bagel and I thought it was weird that it smelled like cinnamon and had nothing on the top. Guess what? I got a cinnamon raisin instead. Bagels are hard.
Three more hours to kill. Since we were killing time on a college campus, we tried to be courteous of other people’s ‘safe spaces’ and talked in code about anything scary, such as george-union-nora’s, if you’re picking up what I’m picking down. (I kid, both of my sisters-in-law work on college campuses.) Tom was losing his mind. He officially has hair that is almost half an inch long, which he dramatically tucks behind his ear. Then he said the word hashtag, so I knew he was ill. He said he was embracing the Seattle culture by growing his hair out, using his new words and seriously considering getting skinny jeans. I edited out a few of his other points because not everyone can handle, well, Tom’s words.
Met with the doctor who seemed very intelligent and kind. He knew a lot about POTS and treatments out there. He was able to rule out any neuropathy which was great news! There is another medicine he wants me to try, as well as salt tablets if my tummy can handle it, and an abdominal binder while standing. He started to explain it was similar to a corset. When I picked up my phone to leave the exam room Tom had already looked up local establishments where corsets are sold. So helpful.
Took the shuttle back to the hotel to rest! The best part was that everyone got off, we got on, and the driver turned off the bus and went inside the medical center. So, we took shuttle selfies to pass the time while he did (??) inside. Don’t mind my sexy hospital hair. Oh, and I don’t do makeup before being forced to sweat uncontrollably and pass out.
The moral of the story is that I was feeling well enough tonight after resting to take Tom to the Crab Pot. He was a happy guy hammering away at those crab legs and ripping the meat out while flinging little bits everywhere. It was not nauseating or gross at all (that part was a lie though). That’s how much I love that guy who is spending his days off driving and hospital-ing with me.
Does everyone see Tom’s dreadlocks? Thank you so much for all of your kind thoughts, texts, and prayers. I can’t thank you enough for all of your support, people!