After the previous week’s not so productiveness, we had high hope for Week 3. Alas, it was not to be had, for Katie’s neurological issues, after being surprisingly mild for a few weeks, decided they had had enough with being on the back burner and decided it was time to be known. So, this seems to be a good time to tell you about them.
Much of the week was spent with Tim taking care of the house (dishes, meals, etc.), while also helping Katie out. Since work isn’t currently a factor, it cut down on the stress of it all, but still, it was draining. Katie on the other had rotated between, or had simultaneously:
- What we call “scrunching” which is when her body locks down. It has varying degrees but mainly she can’t stop her body from trying to go into the fetal position and then it stays there
- Spasming/flailing/punching/kicking: The limbs do as they feel and we hope nobody, including Katie, gets in the way of them, because they’re quite powerful (they could knock you out). A pair of Tim’s glasses may or may not have been destroyed because of this …while we were on vacation.
- Having difficulties initiating movement: She’ll want to stand up, but can’t get the brain to make the connection with her body, or she’ll try to walk and might get her legs to drag forward s l o w l y, or she might make it a step and collapse to the floor, her hands and arms are similarly effected
- Difficulty Thinking Clearly: Sentences and words won’t come out in an understandable manner, she’s repeat herself (including whole conversations) …a lot, or she’ll start tasks and get lost in the middle of them and thus not finish them. Sometimes she’ll wonder on to something else, sometimes she’ll get stuck not knowing what to do.
- Aching, which is mostly due to cerebral spinal fluid issues. It’s all over and it hurts.
- Smashing: Her hands will decide it’s cool to smash things into her. A good example

Katie Covered in Marker happened this week when Tim gave Katie the daily pill box we keep track of our vitamins with, then left to use the bathroom. When he came back, not only had Katie not taken her vitamins, but she now had marker all over her face that had rubbed off the pill box due to her hands deciding to smoosh it into her face instead of opening it.
- Head shaking: Her head will keep going back and forth very quickly as if to vehemently say “no”. Mostly it just gives her headaches.
Thankfully, like we said, these things happen far less than they used to, and there used to be other stuff, but this is currently what we deal with. Sometimes nightly, sometimes daily, and sometimes momentarily.
…And that’s Katie’s problems.
Otherwise, this week a trek was had to gather food supplies, but only after realizing there were no vegetables in the house and Tim had near nothing to snack on (He doesn’t eat often, but when he does it’s all the time). Our avoidance in doing so was not out of financial distress, rather simply wanting to avoid the craziness that is the supermarket currently, besides we had made our 1 week worth of groceries last nearly 2 weeks. A mistake was realized, however, with the fact that it was the first of the month which is apparently a popular day for doing such activities.
- There was no wheat flour, anywhere. 5 places. No wheat flour. We did however score some yucca flour, so we will be gluten free for the remainder of our bags (yes we bought 2, because: no flour, also we plan to not go back for a month).
- Trader Joes was our first encounter with a store limiting how many patrons were allowed inside. Over the past week, others have followed suit.
- A few checkout lines now feel like banks/salad bars, due to the addition of sneeze guards to protect the cashiers. It was interesting to see who deemed it a worthy addition. Wegmans & Costco were team “Nay!”, while Aldi, Trader Joes, and Kimberton Whole Foods (not any relation to Whole Foods, it’s the local “natural” market, it’s a constant source of confusion as we do have Whole Foods here) were team “Don’t Sneeze On Me, Argentina …or anyone else!”
We didn’t watch any movies this week. It might be because we didn’t find time to hook up the VCR or it might because of Katie’s rough week thanks in part to the weather shifting around a lot and Spring being springy. Your call.
We made a video for Tim’s work where Tim suggests at home stretching to do to help maintain a pain free life. Hopefully it made the cut and we will be able to share it with you guys at a later point.
We attended two Zoom meetings. One was lead by a friend of ours who is Plant Dude (official title) at the ever so loverly Longwood Gardens about spring gardening tips (not that we have a garden). We got to see his Ted-Ed Talk and some news reports he had been a part of a while back.
The other was about “Finding resilience in a time of anxiety.” It was basically camp reunion for Katie, and also informative and a nice grounding from an Orthodox perspective. By the way, it was announced this week that the summer camp Katie attended every summer growing up and was a camp counselor for two summers was cancelled for this year. She feels awful at the thought of anyone missing out on any of those experiences.
This week marked an interesting change in our outdoor life. The Governor of Pennsylvania has requested that one wear a face mask when being around others might happen. We’ve gone the cut up t-shirt and handkerchief route. They are not enjoyable to wear, especially with glasses.
One finding this week, via facebook poll of friends was that many did not drink milk through Twizzlers growing up. Tim is not surprised. Katie’s just happy not to be alone.
Like we said: Slow Week.
















