Weddings and POTS

I really enjoyed the wedding in California, but it ended up wreaking havoc on my symptoms, unfortunately. This was the wedding of the girl I’ve known since we were eight, and had asked to be my maid of honor, so symptoms were anything but “okay” during this wedding. They crashed the wedding, but I was completely determined to enjoy every minute, so I did. Why did my symptoms crash the wedding? The Los Angeles area gets extremely hot during the summer, especially the farther you get from the coast. As an example, my parents’ area is supposed to get to 105°F on both Thursday and Friday… and that’s the kind of heat I got used to while growing up!

Wedding Weather

So what does this have to do with the wedding? Well, it was an outdoor wedding. It was absolutely gorgeous, but outside in the sun. So we sat in the sun for their ceremony (and for a bit before to save good seats). Even though the ceremony was at 5:30ish, it was still about 90°F in the sun. To get to the ceremony location from the parking lot was a surprising amount of walking (the venue was a botanical garden that was way larger than I’d realized it was). The reception was uphill from the ceremony, back by the entrance. I was wearing extremely comfortable heels (the most comfy I’ve ever had on), but they aren’t the best for circulation and walking long distances.

Dan and I at K&J Wedding

Sitting in the sun dehydrated me, overheated me, and made my blood thinner so it could pool easier. I was even drinking water the entire time. When I stood up, I instantly knew my feet were swollen, and a quick glance down confirmed it, thanks to the beautiful shade of red they had turned. Walking back up to the reception area, I was having a very difficult time catching my breath, was very thirsty, and had to keep grabbing Dan’s arm thanks to intermittent dizzy spells (wish it had just been because I love him hehe). I can always tell when my symptoms are bad, because of the expression on Dan’s face. Because of my health issues, he’s used to bad days and good days, so it doesn’t faze him. However, when symptoms get bad (or I have a deep swing into my depression), he looks at me with great concern in his eyes. Well, on the walk up to the reception, he was looking at me like that.

K&J Rings and Cake

We get to the reception area, and my mom has found a table in the shade (thank goodness). I had been fighting the urge to collapse for quite some time by then… not pass out, I just wanted to fall over and sleep in the shade. Dan could tell, so as soon as I sat down he got me some lemonade. Sitting cross legged in a knee length dress on poky chairs while wearing heels wasn’t exactly a possibility. I was so happy that it wasn’t a buffet though, man, at that point I don’t think I could have done it. And I felt like I was being judged for asking for Dan’s help with everyday things, so I wouldn’t have asked him to get my dinner. After food, lemonade, and water, my head stopped spinning… thank goodness! But my feet still felt tight and swollen. I forgot to get a picture with the bride when she came to say hi because I was having a hard time focusing, so that’s a bummer. At least I got plenty of pictures of her, because she was gorgeous. 🙂 When the dancing started, I was so exhausted I sat out of it. Unfortunately, I wasn’t able to dance the entire night. I did, however, love watching others dance and kept dancing in my seat to songs I liked.

K&J Wedding Collage

Seeing one of my best friends so happy, and seeing the intense love in all the little glances, made me extremely happy too! They’ve been together for a long time, since some time in high school, and they still kept looking at each other (and sometimes when the other wasn’t looking) with intense love. It was adorable, and really enjoyable since I remember the start of their relationship.

K&J Take a Bow

I also loved the cakes! They had 18 cakes (at least based on my eavesdropping), and all of the ones Mom, Dad, Dan and I had were delicious. And when the photo booth was empty, Dan and I took absolutely ridiculous photos (they had amazing props available). Despite all the symptoms, I actually really enjoyed myself. It’s surprising, even to me, but despite the physical symptoms I still had a fantastic time!

K&J Wedding Photo Booth

Normally, being exposed to that much heat doesn’t trigger symptoms that extreme. So what do I think did it this time? Well, a combination of things. Before I left for California, I felt like I was getting a cold but I had a ton of errands so I didn’t rest. Then, in Cali, I was doing way too much. In my opinion, Dan and I have a pretty dang perfect relationship. However, I’ve always cared too much about what other people think (it’s obnoxious, but I can’t seem to turn it off at all). I’m also very good at figuring out what other people expect from me. Because of those two things, I was extremely conscious of how much I was asking Dan to do for me. He understands that at the end of the day I have a very hard time physically functioning, and he understands that I try to conserve my energy during the day so I can do more in the evening. But, I know that I am expected to do a lot of that stuff for myself, and that the expectation of what a “perfect relationship” is does not take into account chronic, but not terminal, illnesses… so it doesn’t have one person having to help out the other with a bunch of stuff. As a result of knowing what a “perfect relationship” is supposed to be, and being conscious of how much I ask Dan for, I pushed myself to do way more every single day than I should have. As a result, by Saturday, I was not at my best. The day before the wedding I even tried to push fluids and get plenty of rest. Oh well. Now I just have a much better idea of where my limit is.

I just wish the symptoms would go away. I did so much over my limit that I’m still having intense symptoms. My temperature regulation is even more messed up than it has been, my circulation is really screwy, and my exhaustion is so high I can barely get up to feed myself and the cats. When I was at Pilates on Monday, I was doing an exercise where I needed to raise one arm over my head. When I was putting my right arm back down, my therapist asked me what was wrong. I had been clenching and unclenching my fist (consciously) as I lowered my arm because my hand was randomly all tingly. I told her, so she looked at it and said, “Your hand… can you see that?!” It was very obvious it was a circulation thing, because my hand was incredibly splotchy and the area with the strongest tingly sensation was still white. My hands had been incredibly shaky that day, anytime I tried to make them do anything, and they’ve stayed that way. When I stand, my feet keep swelling and my legs get splotchy all the way to my knee… in less than five minutes. I’ve been trying to push fluids and keep my electrolytes balanced, but my legs, feet, and hands are still all having difficulties. Even sitting with my legs out straight or ever so slightly elevated has my feet feeling swollen. Hopefully, this will be better when I wake up tomorrow because there are things I want/need to get done before my surgery.

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