Those of you who have followed us for a while know I’m terrible at posting once home! So, don’t expect daily updates; not much is going on anyway. Our first morning back, we both slept late really late; even Tank wasn’t stirring. I don’t know how much Amanda got up in the night, but my Benadryl/melatonin cocktail put me out till almost 10. I didn’t get out of bed till 11 Amanda was out cold till then, too! Sleeping without being woken up by nurses or beeping and in our own bed with our pup was great, but when Amanda awoke, she said, “I feel like I’ve been run over by a truck.” The hospital hangover!
I started off the morning washing more laundry and a load of dishes and semi cleaning all of our junk from the kitchen countertops. There was a hoard of boxes and mail accumulated over the month we were gone. So I unboxed everything and double-checked that there wasn’t any mail that needed immediate attention. Amanda came into the kitchen to take her favorite medicine of all. The yellow finger paint consistency liquid to ward off phenomena. Like meningitis, Amanda is at a much higher risk of phenomena while taking the Soliris.
I made some grits for our breakfast, which was a late lunch since we didn’t even have our coffee till noon. No Starbucks, but I did my best with our moka pot and milk frother! Even though we were 30 miles from the nearest StarBs, we still had a special delivery in the afternoon. YJ was returning from Uvalde and picked us up some afternoon drinks. We often all three meet and have Starbucks in the store. We call that our “staff meeting,” so we had this one at home.
Tank had been following us around all morning and was tired. He was knocked out after we settled in our recliners for a minute. As we sat down, staring at our Christmas tree, I dreaded taking it down. The tree is one of many we have, but this year, only one was put up with our crazy schedule. It’s not the typical tree, and I thought maybe we could leave it up; it kind of goes with Valentine’s. Amanda was on board and wanted to redecorate it a little with more hearts. So, she has a few ornaments on the way. Now she can enjoy it since it wasn’t up, but about a week or so before we left for Houston.
I made some plant based broccoli cheese soup and grilled cheese for dinner. Amanda wanted grilled cheese in the hospital, but finding that via Uber, much less plant based, was next to impossible. I’d picked up some fresh sourdough from Sprouts, making a pretty tasty sandwich.
We both woke tired yesterday morning, so I’m not sure if we had to rest much yesterday. I really didn’t want to get up when the alarm went off. We had a visit with our primary. He needed to be caught up on things. He’ll also be helping with pain management. The drive is 40 each way, the joys of small-town living. The plus was Amanda got her coffee fix!
As he updated things on his laptop, he said she was setting off all kinds of interaction alerts with the new medications! We also had to give him the Soliris patient care card to review with information about meningitis precautions. This doctor does a great job; we even have his cell number if needed. We’ve both been with him for a while, and he is excellent.
The problem we’ll run into is the FDA refill procedures with the narcotics. You can only refill those the day before they are due. We stopped using our local pharmacy because they had to order most of the things Amanda would need. We’d be stuck for days waiting for medications to arrive, especially if over the weekend. So that puts our nearest pharmacy 30 miles away. You can’t transfer pharmacies with the big boy pain meds either. It has to be a new prescription, and if the other script is in the system at another pharmacy, you can’t fill a new one. It’s a total pain to deal with, all because of the abuse of drugs. Which in turn causes issues for those who legitimately need the medications. You also have to be seen weekly by the doctor for cases that aren’t considered chronic.
Amanda had put in a curbside order with Walmart, and I also needed to pick up a few things at HEB. So, after the doc visit, we grabbed those things and some veggie sushi and headed home. Once I got Amanda settled, I grabbed a few Christmas decorations to put in storage and grabbed a few boxes to pack the rest. This was the shortest run of Christmas decorations we’ve ever had out. I’m not sure if we even got to enjoy them for two weeks.
We also have a home sign we got at a market last year where we changed the O out with something seasonal. Amanda had already ordered a heart from Amazon before we left the hospital. So, after packing the Christmas wreath, I put that on. Now, all I have to do outside the house is get everyone’s fancy ribbon wrapping down off the trees and my Suburban!
Amanda is more active at home, causing her rate to increase and the pain to set in. Her rate is higher, and will get into the high 130s now. They didn’t have one of the rate medications in Houston; it’s an uncommon one. They always had to order this particular one before she was on it. She has been without it since we got home, and it’s been noticeable. The pharmacy called to notify us that it came in today, so hopefully, it’ll bring her rate down a bit.
Amanda plans to go to work today and get a few things together before we leave for Houston again. She’s been awfully tired lately; she is sleeping away right now. The continuous use of the pain medication makes her sleepy. In the hospital, it was just as needed, but without the IV pain med, she can’t wait till it gets bad and has to pre-medicate for the pain at home. It’s a delicate balance, too, enough to keep the pain at bay and keep her functional but not too much to zonk her. It’s not a fun time for her; she hates the way she feels on pain medication, but it’s needed. It is a two-edged sword we’ve had to balance too many times.
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