May 17, 2021. Adjustment

Thank you for caring and following up on how Alyssa’s doing.

Adjusting to medications: she’s thankfully handling meds well with minimal side effects. Meds make her head feel “foggy,” so she’s not as clear or as sharp as usual. She also gets hungry every couple hours, and gets a distracted look in her eye as the hunger overtakes her. With the hunger comes her craving for salt, as she is on a low-salt diet. When the hunger hits, she prowls and stares at me until I offer a savory peace offering that satiates her, restoring her pleasant nature for another couple hours. Sometimes a fruit will suffice.

Adjusting to “low-salt”: How much salt? We don’t know, exactly. We are aiming for a target blood pressure range, and if she goes above it, then she needs to start a diuretic (blood pressure medication). Doc said basically avoid eating fast food. Al researched a bit and came up with some numbers so we started reading nutrition facts, and HOLY SALT! This is a HEAVY SALT WORLD! 😮 Thank you Lays and Pringles, for Low salt chips! Hooray for Pirate Booty and it’s cheesy flavor! Hooray for my brother who’s researching how to make a low sodium pizza with fresh mozzarella and fresh tomatoes!

Edit: Now her cholesterol is high, thanks to her corticosteroid. Time to adjust her diet again.

Adjusting to new priorities: She’s noticed that I set alarms throughout the day for her medications, and that I will drop whatever I’m doing and unconditionally head straight for the medications. Even though right now it seems so mild, just a little bit of medicine to swallow here and there throughout the day, she sees me staring intently at her swallowing the medication. And once she swallows, I can relax. And the day resumes as if she was completely healthy. Until the next alarm.

We are focusing on the positive. Honestly, we are blessed in so many ways. Her diagnosis, though potentially serious, still gives her complete bodily function and freedom at this time. We have almost no limitations, and can take off and go do things that she wants to do at this time. So we go. She wanted to go to Orlando. She wanted to go to a beach and go seashell hunting. So we went. And we had an amazing time.

Vacation was awesome! Even with an existential crisis! Our rescheduled cruise was cancelled yet again, so we reworked plans to a week in Orlando, going to Universal and Disney World. Then we did a 2nd week on North Captiva Island to go snorkeling and shelling to her hearts’ content. I don’t know how or why, but somehow Brother brought up the topic of death and asked some questions about whether or not we would cremate him if he died before us. Al briefly paused and answered, “No, we’d bury you.” Then Alyssa noticed how easily bugs died and started to realize her own mortality, and that if she died, she wouldn’t be able to do fun things like go to Disney World, and was fighting back tears. I did not expect to discuss fear of death and mortality and spirituality in Star Wars land, while in line for Smuggler’s Run. As I tried to comfort her, my alarm would ring and she would have to take her next dose of immunosuppression. It was sobering. Yet at the same time, it was a good reminder for my own life lessons as I shared honestly with her. Yes, fear of death and the unknown can be overwhelming, but God is greater than death. Yes, life does seem painfully short, but even for flowers that bloom so briefly, Alyssa is masterful at appreciating and soaking in their beauty in that moment. That is a special gift.

Al lost his GoPro Camera. Al had his camera mounted on a new full-face-snorkel mask, and when he pushed up the mask to talk to Alyssa, a wave crashed over his head and knocked off the mask and camera. Red algae killed the plants in the area, so the sand was loose and it was impossible to see with the turbulent waves. Al looked for it for days.

An answered prayer. 2 days later, Al found his mask and GoPro 1/8 mile away by feel, raising it triumphantly out of the water like King Arthur pulling Excalibur out of the stone (thanks Jacob for that analogy). Earlier that day I prayed that he would find it, not really believing he would. And when he did (in the most random way), I started crying because God showed me through this small miracle that He sees us, that he hears us. And I really struggled with that and with Alyssa’s health.

Below are some pics from our vacation.