Even though we didn’t leave town, Friday seemed to be a busy day. After Amanda felt a little better, she worked and handled a few things at home. She had a few phone calls that each lasted a while, taking care of business. In the meantime, I had someone picking up clothes at the cleaners in Uvalde. I can’t catch a break with clothes! They lost my pants, a favorite pair of jean/kakis I love. It’s a good thing I bought another pair of jeans and had them shipped home when we were in the hospital; otherwise, I’d only be left with one pair.
We got ready late and headed to the church to take care of a few things. It was a little too peopley for Amanda. She really didn’t want to talk with anyone and needed to focus on work. Having an office in church can be a detriment when people are in and out and want to talk. I used to laugh when our old secretary would lock herself in the office; now I understand!
We went to our downtown place. I needed to check the Airbnb room; we had someone who checked out. Then, I needed to grab the mail, and a few packages were coming in. I had a few things to prepare for our front porch setup for visitors. I dug around in the garage to find an old sign a good friend made for us. The sign goes over the protocol for visitors when coming into the house. After I knocked all the cobwebs off, I put it up with a bench, sanitizer, and masks all set up by the front door.
I left Amanda at the house for a while and returned to the church to take care of a few things, tall people things that no one else can reach! The coast was clear, and no one else was around, so Amanda wanted to come back up. I picked her up, and we went back to the church. She got busy with things, and I had some tech stuff to take care of. We were there for a while, so long it was past dinner time, and we were hungry when we got back home.
We had planned to have a vacation this weekend. It is a long weekend, with MLK Day on Monday. It was a trip I had all planned out to a ranch with a huge lodge. We’d invited a few other families to go and were excited to spend time with friends. Once Amanda’s AMR was diagnosed, I made the sad call to cancel the trip. I could see the writing on the wall. Little did I know what we’d be getting into. I had some vacation days already set to be off. Once set, we aren’t allowed to move them, so I just left them as they were to be off with Amanda this weekend and for the trip to Houston. Once we’re back from Houston, I’ll try to make a few trips before we head back the following Monday.
I wish we were in a big lodge on a New Mexico ranch in the mountains instead of getting ready to head to the hospital. Amanda sent me a reel the other day that said the 2025 goal was simply to drink coffee in pretty places. That’s a pretty good goal for us in 2025, with much more undertone, but I’ll take it.
I finally sat down and went through all of our mail that wasn’t in a box. Out of one month of mail, there were two things I needed to keep. The rest was just junk! One thing that scared me was a letter from United Healthcare saying that Amanda’s hospital admission wasn’t covered! It listed reasons for admission as fatigue, only later on mentioning heart transplant issues. It noted that she had a high heart rate but that the treatment could have been done as an inpatient. I just laughed after a month of hospitalization. In the end, it did say that we shouldn’t receive a bill for anything. I’m assuming the hospital took the hit, but the hospital will resubmit and get it paid surely. We’ve never received a letter like that before, it was interesting and startling at first, but I’m sure we won’t have any issues.
Saturday, we were making up Christmas for Tank. We have always taken the pups for Chick-fil-A grilled nuggets, the pet store to pick a toy and treats, and a pupappuccino from StarBs on Christmas Eve. This was the first year we’d missed for the apparent reason. We still wanted to take Tank on the trip. When I grabbed his harness, he seemed to know what we were doing. He was making circles and jumping up and down. Tank isn’t much on toys, Zoey loved any toy, so he picked out a couple of treats. He had a blast and was thoroughly worn out on the way home!
We picked up a few things, and I ran into a store to grab some pants for Amanda for the coming cold day. She doesn’t have anything that fits her comfortably with the fluid retention. A long line was waiting at the counter, and I was probably 20 people deep in line. At one point, I was waiting right next to the undies and had a flashback. It’s good that I wasn’t at Walmart, or I may have hollered someone!
We were going to grab pizza at our favorite place and eat in the car, but Amanda was getting tired and wanted to get home. So, we picked up some fideo from one of our favorite Mexican places. Brittany was in town and came over to hang out for a while. I ate dinner with the girls, then went to some friend’s house while Brittany was on duty. These are relatively new friends; we just organically connected with them. Amanda and I really like them. It was good to hang out, and I was there close to midnight. Amanda wasn’t even in bed when I got home. So, I organized a few things with all the bags I’d brought in from the hospital stash. Tank is a good boy who doesn’t get into things, but he may have gotten a wild hair and wanted to rummage through things. I got trash and boxes ready to take out to the street. I was organizing things to be prepared to leave for the few days we’d be gone.
We’re going to leave around noon to head to Houston. We’d talked about going to church and sneaking into the balcony to skip all the interaction with people. Amanda decided it would be too much on her to get ready, go there, and then travel so far. It’s probably best because I’d have likely been an unintentional jerk as a lineman protecting her!
She was doing too much to get her stuff ready this morning. She is having a hard time with the activity-induced pain. She wants to do more but just can’t. While getting things together, she said, “I want to go faster but can’t!” The pain associated with her increased heart rate is what is holding her back; otherwise, she’d be in pretty good shape. If we do not see any improvement by the time the Soliris treatments are over, we’ll need to address the issue. Sooner or later, we will need to consider quality of life because she doesn’t have any right now.
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