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

Deaf and HoH holiday tips

Are you celebrating with any Deaf/Hard of Hearing (HoH) friends/family? Please consider these tips from @adventuresindeafed . Socializing was hard enough with my existing disabilities. I cannot choose whom to chat with, and I seldom eat in front of people. A standing cocktail or h’ors d’ouevres party is impossible for me. But as I started losing hearing (now deaf in L, HoH in R), it added another layer of reasons to feel isolated, even at a casual brunch with good friends. Single sided Deafness (SSD) makes it impossible to localize sound, or process layers of sound (eg if the TV is on and you’re talking to me, I will

not hear you. And if multiple people speak at once, I can’t understand.) I’m having more bad dreams about missing vital info at the doc bc of my hearing, and more social difficulty. It feels really bad just to miss a joke bc you can’t hear it. PLEASE, FRIENDS: if you are able to make your gathering more accessible, do so. 💗 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #deaf #hoh

A contender to watch

I believe in the discipline of the body and the mind bc the scriptures demand it and I know that God’s grace renders human capacity irrelevant. Praying for @nick_cross26 and all the student athletes in my life, for your protection and success. May each one of you be a contender to watch. “I will not let thee go, except thou bless me.” Genesis 32.26 #lifeismysport #learninghowtolive #avmsurvivor #strokesurvivor #shreddedgrace

A vs. B

(A) 1x/wk I wake up like, OOOOH! I feel good! Maybe I’m better! Let’s DO THIS!! (B) Then it hits after I brush my teeth. Or else 6x/week I start out in state B 🙄. All my systems are off, but by God’s grace, every day is full of love and laughter. Yes, I know our situation is serious, but my parents are a Complete Riot. UPDATE: the Events I’m having are NOT SEIZURES. I’m following up on a couple leads with docs, and I’ve seen some changes this week, but the events are still happening. To a lesser degree, but this may be bc I was also in excruciating pain for several days, which distracted my system. In any case, I’m trying to accept whatever is happening with my body and enjoying today’s cool weather. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

10 years of Walking!

Today is my 10th walking anniversary!! Mobility has never been more valuable to me than now, as it has declined. I noticed an acute change in my physicality on April 3. Since then I have investigated this by recruiting help from Docs specializing in every area of medicine. A few months ago I started sitting and resting on the stairs. This was a huge concession on my part, but a good and safe choice. I use that time to take selfies with my lamb, Sandy. 💗 I recently started having seizures. (Presently not Tonic Clonic.). No worries, safety precautions are in place and PTL I have friends who deal with this I can ask to show me the ropes. The next step is an 8 hour video EEG on Oct. 1. My MRI was stable and my 30 min EEG was normal. My seizures are nocturnal and leave me with mashed potato head afterwards. All this is part of the bigger picture of This Disabled Life, and although I don’t know what the future holds, I feel called to defend the mobility God has given me. Thanks for helping me, @powherchiro !! Last week Dr. Cheryl TOTALLY called me out on my breathing 🤣🤣😑😑😑. I tend not to notice as much bc of the tinnitus and deafness. But it has been more labored and Darth Vader – like. But hey, I’m doing the best I can. And my best looks different every day – and that’s ok. My fellow mobility – seekers: every day is different. There may not be a discernible pattern that will help you crack the code of walking. But we keep adjusting moment by moment and do what we need to do to live life within that day’s parameters. 💗💗 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace