I don’t write about my main condition often. In fact, I barely mention it’s name in real life (Kugelburg-Welander Syndrome, Spinal Muscular Atrophy (SMA), Type 3 or just SMA3). Besides the naming of it not doing much to manage or change it’s effects on me, no one knows WHAT all its name implies or what its effects on me are. So this usually has me launching into a super simple explanation of how this syndrome is my muscles’ inability to
For the past month, I have been creating… but not like you’d think. I’ve been giving answers to questions on paperwork to create means to clear up my backyard, still. I’ve been making phone calls, creating and rekindling connections. I’ve been taking inventory of our kitchen, creating a situation where ‘food insecure’ and our home no longer appear in the same sentence… except for this one, in words only. I’ve been making boundaries, creating safe spaces where I can rest.
I call Nephew into my room, greet him and ask if he can help me. He nods and waits. I take as deep a breath as I can and rattle off a list of medications I need him to pour, shake, spray and give me. He used to categorically object to my use of so much medication in such a short amount of time but he no longer questions. He trusts the method to my madness, backed, I suspect solely
The tops of my feet looked like freshly baked loaves of bread: sun-browned and puffy. Rather inviting if they were actual loaves of bread instead of feet. It was day five of no electricity, thus no AC and the house was broiling in the mid-day sun. Penelope The Dog, freshly shaven and splayed out on the cool tile floor beside me, shared the barely cool breeze that made it’s way through the front door and out the back door.
I usually have anywhere from 5 on the low end, up to 25+ fully ready to heat and serve gluten free meals stashed in my deep freezer and my fridge freezer. I also have the entire first freezer drawer of my two drawer fridge freezer for all my gluten free stuff: frozen fruits for smoothies, GF chicken tenders, GF bread, GF sweets, etc. At any given time, I can pack a lunch bag and be anywhere, meals in tow. I’ve