I have lived somewhere in this metropolis for 29 of the past 31 years, split into two periods of time. I don’t ever recall a time where the rain poured with such steady thickness for so many hours as it did last Sunday, but I had chosen to ignore to the flash flood warning messages coming to my phone one after another that cautioned against any unnecessary travel. The only music in my ears was the pounding down against the windshield from the heavens as I carefully locked my gaze at the highway ahead of me, the memory of Hannah telling me to drive safely so that I could be sure and return to our family compelling my full attention on the dimly visible sections of the road.

I wasn’t traveling to First Church UCC because I feel particularly religious these days- I don’t. I am not sure I will ever feel comfortable or trusting enough to officially join another church again (these are statements about where I am at, not about what any of you should be thinking or doing), but if I did it would probably be a Unitarian congregation because that is more in-line with where I am spiritually at. But some of their members have been very kind to us, so show up I will from time to time, and I am a big fan of the outreach they do for certain groups. The COVID waves and variants keep coming, but life must continue to flow on for each of us, for them, and the community groups they serve.

I gazed a smile at Pastor Susan she couldn’t see through my mask as I walked in late and sat in a back pew. I listened quietly and lit a prayer candle for a loved one. I complimented her on her sermon as I was leaving (she spoke on the need for increasing compassion and love of others regardless of their circumstances, also something I can always be happy to support) and then jogged through the rain to my car to repeat the tense drive back. After so many long months going only to doctor’s offices or other essential places, emerging to meet Gena for breakfast or visit other places I want to go has been healing. I have read the latest data on breakthrough infections with the Delta variant and it’s not pretty, but at this point, as I see it hiding out forever lacks sustainability…so I think for my mental health self-care and that of my family we are going to continue to go places and mask up.

Regardless of whatever else is raining down in my life, I know I can always count on being warmed by the love of our small family. Hannah told me she would love to do my make up this past Monday, and I can say despite the weekend rain that the only flash flood I experienced this past week was the feeling of being flooded by how much she loves me (and she, of course, is so loved in return). She has a preference for very natural make up, which is just fine! As all of you have seen, my own personal style tends to be a bit more colorful. Sometimes the makeup I do for myself is art, sometimes it’s just makeup for a special occasion, and sometimes it’s messaging in its own way.

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Other parts of my self-care forecast are also hard to predict. The allergy Gods give and they have taken. The hive size for certain items from the scratch testing determined what was recommended to challenge test in the office. Garlic ended up being cleared as something I can safely eat after challenge testing, and I can’t tell you how happy about that I am. I have still been trying to find a bean type I can currently tolerate and it hasn’t exactly been going well. But those I am testing out at home because there are a ton of different bean types. Kidney beans are causing hives, so those are out for now. I know my allergist would prefer I stop trying to test bean types at home…he’s a super sharp guy and I respect what he says, but I also know that the best diets for cardio vascular health based on current studies are either low meat or no meat, and my allergic reactions to the bean types I have been reacting to are mild at this time and easily managed at home. And while I realize POTS is a problem with the autonomic nervous system, I would really like to eat a diet that would be more protective against developing other types of heart problems.

What I have found is that my POTs is heavily influenced by the amount of sleep I get. Heavily. If I get 7 hours or more, right now my ability to tolerate movement and heat is good enough to allow me to do everything I need to for our family. Anything less than 6 hours, and my body is going to struggle a lot more to keep my heart rate stable with movement. For me, this realization has been incredibly stressful because Tony’s middle of the night wakings can have a big impact on what happens to my sleep and therefore my ability to function. Before I could just drink something caffeinated and soldier through my day no matter how little sleep I got. Now with POTS, I can’t tolerate caffeine at this point and nothing masks what the lack of sleep is doing to my heart rate.

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This has caused me to feel pretty tense and worried about Tony’s middle of the night wakings. I was super stressed out about how poorly that and the medication tweaks we were trying to do were going when I did the last in-office allergy challenge test we did for Stevia, and it took me a few days to think through why the swelling in my eyelids from the Stevia went down so quickly in office before the antihistamines were even in my system. I was producing a ton of adrenaline because of how stressed out I was (we’d been up since 130am that day), and adrenaline is one of the ways a body can also fight swelling and allergic reactions. The most recent medication change is holding out better for Tony and that is helping with his sleep, but further adjustments may be needed at some point to help him continue to sleep adequately most of the time because our family needs me also to sleep so that I can do all of things that are needed of me.

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My role in some of the therapy work we do with Tony can occasionally still be pretty demanding physically. Yesterday we had to make a significant unplanned change to his most preferred walking route that was necessitated by landscaping work being done during a larger section of our community’s main road, and he was incredibly displeased. I had to chase him down multiple times and block him three times from running into heavier traffic, traffic that is legally able to go about 40 mph on that street. Tony weighs 124 pounds right now. 15 minutes of that in 93 degree temps had my heart rate at 132, which isn’t great based on what my pre-POTS heart rate was, but it was within a safe limit for me and allowed me to do everything that was needed to keep us both safe.

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I was able to get seven hours of sleep the past three nights, otherwise my heart rate would have been much higher trying to do all of that. Even with those more stressful moments storming down, I took time to soak up an awareness that my day still blessed me with two rainbows at the end of it all, one from Tony lining up his color sorting bears after our first walk, and one in the sky as Casandra and I were walking back with him many hours later at the end of our evening community safety walk.

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I am still needing to take hydroxyzine to help me sleep right now, but I am continuing to work on weaning down the amount. My internal stress levels are as well-managed as my POTS as long as I’m getting seven hours of sleep, so for now my PCP and I are leaving it at that. I did buy myself a weighted blanket when Macy’s had them on sale earlier in the month (it was an insanely good sale, I felt super lucky about the timing of that). I noticed during the early morning hours a few weeks ago as I was curled up on Tony’s floor taking deep, calming breaths while he was bouncing wildly up and down on his trampoline that his weighted blanket had a very soothing effect on me, so I have added that to my sleep routine and it’s fabulous!

And the rain. I have always been soothed by the rain. Usually there’s not so much of that here where I live, so it’s a good thing longer tracks can be found on YouTube and Spotify that I can play softly in the night as I am trying to charm sleep as well as the other self-care elements to rain down into my life right now.