…and death is the final stop.
Since my last post (made oh so long ago, it seems), many things have changed.
My service dog candidate washed out,thanks to a bad puppy experience with a loose dog at the park that he never got over, and is now just a large, goofy companion animal. He still does some mild command-tasking but I’m not sure he could ever be suitable for PA. I feel like I failed at something very major, even though I’m no longer at the point that I need a service dog, but I’m not blind to the possibility that I may need one in the very near future, should I have another relapse. -1
I have been working on staying on Wahls Paleo / trying to go to Wahls Paleo Plus, but it’s tough to do when a) you’re not financially contributing to the household expenses (esp. grocery) , and b) everyone else in the house is blind to the benefit of dropping gluten, dairy, and refined sugars for chronic illness, much less the general health benefit for people with or without a chronic condition. (My husband is the only adult in the house who doesn’t fall under the “chronic” blanket, and I’m the only one who hasn’t been diagnosed with 2+ conditions.) 0
Also on the WPP front: it’s hard to transition to a ketogenic diet when you’re breastfeeding on demand. 🙂 We had a healthy baby girl right before Christmas, who is now 15.5 lbs, about 28″ long, and she eats like a BOSS. I know that breastmilk is keto genic already, and me being in ketogenesis shouldn’t have any negative affects on her, but trying to nourish my child while my body goes through a major energy transition doesn’t seem smart to me. So I oscillate, and wait. +1
I have been off any DMD since 11/02/14 – I have my last Tecfidera bottle, with the date, next to my bed to remind me of where I was, and could be again. Other than a few days of mild fatigue, I have not had any issues since stopping medication. It makes me wonder if relapses are more the result of medication interference than the disease, itself, but that’s another post. +1
My journey to eliminate as many outside toxins as possible seems to be working, to a large degree – while my hair is too thick to tolerate no-poo, I only use a clean shampoo and locally-made goat’s milk soap; Crystal deodorant (though if anyone can recommend something like Primal Pit Paste’s effectiveness in the heat and humidity, I’d appreciate it); and Primal Pit Paste’s tooth powders. All these things make a difference. I’ve reduced my daily lazy in front of the television in an effort to increase my daily productivity. +1
I haven’t been to my neurologist in over a year, I’m ashamed to say. Our insurance has changed multiple times, and now that I’m back on a private plan, I may consider checking in just to keep from being fired. But honestly, I’ve had no need of a neuro telling me I need an annual MRI and bloodwork to tell me I should really consider going back on a DMD, even though I’m doing very well. -1
The humidity has skyrocketed in the past few days. It’s been unpleasant but not unbearable – so far. –1
I am positively terrified that this summer will send me into another relapse from stress and humidity. I do not want to relive my period of initial diagnosis, when Rett was only nine months old and the cumulative stress dried up my milk, which I lament to this day even though he is a rambunctious, giant, three-year-old boy. -1
I am going to try to get back into some sort of fitness routine, for myself, and for the kids. I am flabby – Rett asked why I had “arm flaps” the other day. Ouch, toddler honesty. Plus, it will give me a way to get Abram’s excess energy out, and maybe fix his PA issues. +1
I am also very seriously trying to find valid work-from-home opportunity that I can do with an infant, and possibly a young kid in homeschool (for a year, at least). So far, Beachbody looks the most promising, if for no other reason than I could have a job and get fit at the same time. But I have serious reservations (mostly fear – everything feels like insurance did for me, and that was a NO). 0
So far, I’m sitting on even. It’s my goal to be in the positive at the end of 2016, and this is my therapy. Here goes nothing.