No more stairs? 😑

FYI I am DEEPLY INSULTED by the stairs thing. I still sleep upstairs but use stairs narrow enough to accommodate weight bearing on the rails on both sides, so let’s assume this is ok. 🙌

I strained my R hip flexor 😑. There is now a Coach R- sized thumbprint on it 😑. My L hip is known to be torn. 2/2 is not a great statistic and I’m trying to rest. Also, D scrutinized me on the stairs, was appalled 😳 (even though I was really concentrating on my form like R said) and decreed that I should be using the escalator or elevator from now on. 😑. Before I could walk A2 made sure I could navigate a standard flight of stairs during inpatient, but my long term mobility is still being worked on. I am thankful to have people with great ideas for my treatment and their eyes on the long term prize. I’m also thankful that Mommy Daddy and I can be nice and snug in the house together on these rainy days. You know what? Although the extra dizziness is still throwing me off balance the nausea is much better. I am continuing my Trauma Treatment with EMDR and it really addressed Psych-related nausea, which is the lion’s share of the problem even though I know my cerebellum is calibrating, too. Kindly pray that my hips will feel better, I will be able to eat appropriately to support healthful activity (I stopped eating food like a normal person in 2014 due to stress. This is why Smurfette is my RD) and for strength and grace for Mommy Daddy as we make his next set of appointments. #strokesurvivor #avmsurvivor #lifeismysport #learninghowtolive #shreddedgrace


Thank you SO MUCH for praying. The Event was lovely this morning. Thank you for your prayers. It was great to see everyone and JLSS was my wingman. I spoke on Rahab’s scarlet “line” – TIQVAH, translated elsewhere as hope or expectation. I’m still dizzy but the nausea is drastically reduced since receiving some treatment on Monday. 🙌🔥 I am grateful for this step in the right direction. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Washing Machine 😑

I am really enjoying prepping for my Dec 4 event, but request prayer re health: Uncool nausea and dizziness – motion sickness due to walking and level changes (eg stairs, sit to stand). Thank God this is not constant, but when it presents it’s very embarrassing – a lot of gagging and hugging the wall as in early Recovery. It’s not severe enough for me to medicate it yet, but I’m not thrilled that it stems from using my legs as opposed to riding in a car or on a roller coaster. I never explained to David & Randy how severe the original cerebellum adjustment was when I woke up. It was like being in the washing machine for the spin cycle – I could not even tolerate having a pillow – the only safe place was flat in bed. This is why learning to sit was so horrible, and although my current symptoms are a fraction of the severity, they give rise to many inconvenient memories. The good news is that I am on the 3rd week of Sister Maria’s cardio build up program and I did not gag in front of Coach R during squats (I think bc he requires a good breathing pattern) and he read the tea leaves and did not make me do lateral step overs. But the thing I’m most thankful for, even as life has gotten more demanding, is that I can leave all of my concerns in nail-pierced hands as I do what I know is right – He looks after my interests for me. Please note that I am wearing my claddagh in celebration of our Irish heritage. @erkep @abjorli #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Hoya Saxa ⚽️

Watching ⚽️ helps me neurologically, no joke. I spent 3+ years running in the AlterG while watching ⚽️ on TV. It’s a ton of eye work, and when combined with motion it’s fantastic. Early PT taught me to focus on one point and maintain movement. I’ve graduated to following the ball with my eyes while meal prepping (hi, SmurfetteRD!!) Well, k fine, I’m actually forcing the issue. I’m dizzy and nauseous off and on, which is really cramping my style. 2 nights ago a door frame jumped out of nowhere, but I kept my wits about me. I clung to Trainer D all Friday. It’s R’s turn tomorrow. But you know what? Georgetown won. #hoyasaxa – and #istillbleedhoyablue #avmsurvivor #strokesurvivor ##lifeismysport #learninghowtolive #shreddedgrace

Refreshed 💗…but nauseous 😑

I couldn’t hear a word she said bc she was at the far end of the table, but the way my friend held her cup made me tear up. The social ramifications of hearing loss hit me hard last week. But we have so much history that I can not hear the majority of the convo and still be refreshed by my friends. The physical impact ebbs and flows. I enjoyed a few days of respite from the nausea and dizziness, but then I tried to get out of the car again while it was still moving 😑. It proves my inability to fully discern movement vs. rest. It first happened with Boo Boo last year: “GIRL, I AM STILL MOVING THIS CAR. WHAT IS WRONG WITH YOU?!?!” This time it was Mommy: “Please close the door so I can finish parking.” 😑🤣. Don’t worry, the situation is being worked. My sensory processing continues to be off and it’s unclear how much I can control via my usual strategies. But as in inpatient, my other senses and ability to recognize people gestures (like the cup holding) and other markers has been strengthened. I continue to experience life in an unusual way. Daddy transitioned to the cane last week!!!! I gave him an extended pep talk about spreading the floor w his feet like Trainer D says. 🙌 please pray that I will feel better and for wisdom as I consider training options with Coach R and Trainer D #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Chasing December

Prayer Req: increased stamina for December 4 event and return to church || I lost a TON of stamina since my gait breakdown and initial hearing loss in 2018. The increased demands of life in 2019 have been rough, too. But the dizziness and nausea from this last adjustment (Oct ’19) have abated! YAY!! I feel SO MUCH BETTER. The Guys helped me get my sea legs AGAIN.

Pep talk with Coach R:

Me: Randy, my knee really hurts when I’m on the stairs.

R: Are you concentrating on your form? 😑

(Side note: I 🤣🤣🤣 bc it was SUCH a Randyish thing to say. Also, it was extremely reminiscent if Andy Frankenstein.)

Trainer David has given me a gentle 3x week home cardio build up plan that concentrates on my breathing. I’m working towards a Dec 4 event and returning to church. The construction is finishing up and I’m so excited to see all the kids! Thanks again to all my friends who have driven me around and kept me connected 💗. Returning will be a big physical task, though, and I will need to pre plan and ramp this up.|| David has been my biggest breathing critic since 2014, but backed off when the PTSD surfaced. I flatly refused to do a V02 test several years ago and just looked at him with tears in my eyes bc I was too shy to tell him that I have Breathing Baggage from the Life Support/Ventilator process. Randy encouraged me to run (he kept on giving me rules to limit wear on the legs except speed ROTFLOL) bc he saw it was emotionally necessary for me. But I can no longer get away with that superior lung capacity I built on stress breathing bc my arm almost fell off in 2017. Now I’m working on managing my oxygen levels during exertion and am keeping a Pulse Ox log. I will discuss with you later, D. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Learning How to Stand 🍫🍬

It hurt SO MUCH to learn to stand. Before you can bear weight they squeeze you in a human vice called a Standing Frame. Daddy used to distract me from the pain by making me do mental math (what is 3.5% of XX.Y? 🙄😑) and bribed me with his favorite Lindt Truffles (which I never ate, but I thought it was a nice gesture). When I said yesterday that “everything went smoothly w Daddy” I was like YES!! 🔥 I FINALLY get to post this message bc all prior procedures have NOT been smooth. So that’s why we were apprehensive and why we appreciate your prayers so much. || Daniel and MJ are ok 😊 – please continue to pray for complete recovery for Daniel and special grace for MJ as she jumps through this round of Medical Hoops. She is a particularly agile person, and tough as nails, but this process, especially at this stage in the game, is rather wearing. I sent her a Ginormous Variety Pack of Daddy’s favorite truffles as a show of support. Bc when stuff happens I immediately start ordering stuff on Amazon. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Praise: Daddy’s GB tube ✅

Everything went smoothly with Daddy!! The procedure was on time and efficient, and the people smiled 😊 which always helps. We will do this again in January. Now we’re headed home to have more fun. Daddy informed me of the activity list. What he does not know is that we’re doing squats and step ups later. 😑 JK. He gets to rest today bc he had a procedure. We are SO GRATEFUL for your prayers. We were apprehensive but now we are all very pleased.|| ***please continue to pray for Daniel and MJ. ** Merci!! #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace #brainaneurysm #gallbladder

3 Prayer Reqs

3 Prayer Reqs: (1) DADDY gets his GB tube replaced Wednesday. Pls pray it’s easy peasy. (2) DANIEL’s knee surgery, also Wednesday. Pls pray that it’s effective, for pain relief, and rapid recovery. (3) MJ just had another very scary incident 😑. This is her 3rd post TBI. 😢😢😢Pls pray for rest, healing, and good medical info. || Thank you so much!