MLK 2022 | Ernie’s Pep Talk

📸: Bob

I used this pic in Ed’s book! It was the first book I wrote bc I was sad when I was officially let go from my Real Job. To be clear, they kept me on way longer than legally obligated to and I had access to all my benefits, etc. 💗. I was just sad bc losing my job was just another signal that this disability thing was for real. My brother pep talked me: Ning, now you can do WHATEVER YOU WANT!!

This is the YouTube version:

Yes, I bought a lifetime membership. 🤣🤣🤣🙌🔥

It’s so pretty outside! ❄️ when I was confirmed profoundly deaf in the L ear in Jun 2020 and acknowledged that my R ear had declined I faced the harsh possibility that if my R ear followed the same timetable as my L ear I could be profoundly deaf in both ears by 2022. It’s Jan ‘22 and I still have a ton of useable hearing in my R. 💗😊💗And I’m definitely using it for good things. In 2020 I forgot about my hearing situation and bought a lifetime membership to @dwellbible 🤣🤣🤣. When I realized what I had done I was like, k – I just need x more years of useable hearing to break even 🔥🔥🔥. I also started preparing by learning #cuedspeech and #asl. I’m a novice, but I can be sassy during telehealth spontaneously in sign/cueing. 🤣🤣🤣. And when I started I knew I had to strengthen my eyes and hands. Options: (1) video games (2) knitting. I chose knitting. At first I had to fall asleep with my Pain Light Stim on my hands bc it hurt so much. But I built up hand strength and coordination. But everything had slowed bc of my overall health. 😑. And my original brain injury means both speech production and receptivity are slow and this makes me anxious. I seriously gave nightmares 🙄 😑. But right now my eyes are bothering me. I think my enlarged optic nerve (not an emergency) is driving this. Prayers appreciated. Xxoo #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Sandy’s Adoption Day

Sandy joined our family 1 year ago. We are celebrating her Adoption Day tomorrow! She was hand knit by fair trade artisans in Peru, and loves bath time and playing Cooking Show with her friends. Ed Blueberry and Shirley Wolf take special care of her bc she is only 2. She is deaf and is acquiring language LIKE A CHAMPION. We use both #cuedspeech and #ASL. She helps me learn, too, bc she loves me to tell her stories, read books, and sing songs. Her favorites are Jesus Loves Me and Feliz Navidad. She is named after two lovely nurses who cared for me when I woke up. Happy New Year! #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

January = Medical Vacation 🔥💯

We are still enjoying our Christmas lights. More importantly we are enjoying this promise while we do quiet home things knowing that illness and disability cast a looooong shadow. I took the next available with my new Neuro Opth (in Feb). Text is no longer blurry 👍 but my eyes are uncomfortable and I often eschew corrective lenses and walk around the house like, 🤪. I’m a LOT of fun right now. Ask my Mom. February is also when I have my Dysautonomia intake with Hopkins bc my lovely Neuro pointed out we gotta rule this in or out. So this means January = Medical Vacation 🔥🤣🤣🤣💯. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

👁 update 💗

Eye Update: GREAT check up with my Neuro Op. Loved them since 2012. I threw a TON of info at my doc (last visit was 2018), and she was very thorough, etc. My eyes are healthy and there are no changes to Rx. The latest vision change…there are more eye movements, and also a lot of figurative moving parts to my overall health condition. I must preserve my eye health, especially since my hearing has declined. Although my eyes are healthy, there changes are occurring in a larger health context, and she referred my to another Neuro Op to monitor my optic nerve, which is lookin’ kinda large, and PTSD etc can affect that. At least this doc can give a 2nd opinion, and potentially monitor it over time. I will ask my Neurologist what she thinks. Overall – I’m glad that my eyes are healthy. Thanks for your prayers!! On the flip side, the other stuff was rather sobering. However, Sandy was MUCH admired in the office. 💗. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Sandy’s Pavlova

Hey, @erkep @ruth.sweetruth – Sandy wants to know why this doesn’t look like Grammo’s Pavlova. 🤣🤣🤣🤣🤪. Probably bc I used monk fruit and liquid egg whites I’m trying to use up that Instacart brought me by accident. I inverted it Nigella style. This is what cooking means to me: it’s an incredible cognitive workout. I can’t use my eyes to refer back to a recipe, so Iook at vids and reels to learn method. This will need some adjusting. And way more cream and berries. My eyes are still not good – probably bc as I lose hearing I’m forced to use them more to read captions, ASL receptivity, etc. It’s super stressful. #avmsurvivor #strokesurvivor #learninghowtolive #lifeismysport #shreddedgrace

Being Seen

This man had never walked – he was born unable to use his legs. How many times had people averted their eyes over the years bc this man’s suffering was too hard to look at? But one day, Paul, led by the Spirit of God, regarded this man intently – other translations say he steadfastly beheld him, or fastened his eyes on him – and Paul knew this was a man of faith. He wasn’t just part of the crowd gathered to observe the commotion, this man listened with *expectation*. So Paul singled him out and said, Stand up. And the man leapt up onto his feet, and walked. WOW. The miracle began with someone really *seeing* another person. || PRAYER REQ: 1. Eyes, 2. Meds. PRAISE: my Team. || My eyes are acting funny. Last time this happened was May/June. They recovered with rest. I get checked by my Neuro Op next week. Meantime, I’m uncomfortable. I’m also navigating a med situation. I got an Rx for head pain that also helped for 4 wonderful nights with the Events I’ve been having. Then it didn’t 😑. A higher dose did not help, either, just resulted in over sedation and 🤪. Please pray for God’s grace in accepting those 4 nights as a gift without “needing” more. Thank the Lord for kind and skilled medical care. And for my parents as they deal with 🤪. 🤣🤣🤣💗 ps this eventually became cranberry 🍊 sauce sweetened with monk fruit. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Starfish Project

Thank you, @starfish_project !! Your business model is why I got an MBA. And your mission brings resurrection power-backed hope to valuable women who have been treated like they don’t matter. Your jewelry is beautiful, like the women who run your company. It is an honor to wear pieces made in alignment with the heart of the Savior. Soli Deo Gloria. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Kitchen Mobility Update

I had this wild idea it was Friday. Now I’m all disappointed. This used to happen all the time at the reception desk at the gym. They’d break the news to me and ROTFLOL. I baked this bread in a heart shape to make Mommy Daddy laugh. THANK YOU, Disabled Community, for giving me cooking tips when I decided to pursue Kitchen Mobility in 2013. It ebbs and flows. In Mar ‘20 I LITERALLY could not scramble an egg. Today I made that bread and DF (Cauli) chicken clam chowder. Yes, my back, face, eyes, ears all hurt. Also, my entire torso, legs, and arms. My physicality is not fabulous, but cooking helps me manage stress, so it’s worth it. #lifeismysport #learninghowtolive #avmsurvivor #strokesurvivor #shreddedgrace