Hey, Matt @hopeforhankey I left the house today!! It was for a medical reason. But still 😑. Thank you, @powherchiro for explaining my spine and making me laugh! I ran in the @alterginc for the first time in 2years. I almost burst into tears bc I was so happy. And then I panicked bc I couldn’t breathe. It’s the smushy lung thing aggravated by the mask and hospital mental baggage 😑. I lasted 10 min – intervals w nasal breathing, @dmurg433 . And then Dr.C “suggested” that I get back in the machine and run longer 🤣🤣🤣. Me: I know people like you 😑 *cough* Coach Randy *cough* 😑. Then I stretched and did core work. The pain bothering me since Sept is better. This problem is bigger than any one body part – it’s simply a consequence of the privilege of walking as best as I can for 9 years. I think I need to rebuild and maintain. It’s been a rough few months. My ears are definitely bothering me, but it’s good practice being in public and communicating. I go back next week. 😊 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
My psych said, There is no Rx as powerful as Restorative Sleep…All your Neuro symptoms will be aggravated by a growing sleep deficit…you must prioritize sleep. Me: Yessir 😳😑. I respond very poorly to Rx sleep meds, but have been sleeping so much better w natural strategies and your prayers. We have done a TON of mental health work that is ongoing, but I’m off that PTSD dreaming drug and am working through the rest of the stuff with professional help driven by God’s grace 💗. I’m able to cope with life better since I started sleeping more. Still searching for the reason for my pelvic pain. I’ve been cleared by the OBGYN, thoroughly imaged, and was reunited w @powherchiro yesterday. I have a tiny bit of pinching in L4-5, but it’s no biggie. Dr. C opened up my hips and had me stretch and do core work w A. 😑😑😑 ouch. I fussed throughout and am so sore today. Pls pray the pain will go away and for wisdom for me: I need discernment on how much my body can tolerate given the Sea Legs ⚓️. My ears are bothering me 😑 and I want to “return to sport” but must make a wise choice. I follow up w @powherchiro tomorrow. She hasn’t seen me since 2018. Since I’m deaf in the L now I wear a blue earring in the R and say, TALK TO THE BLUE! 🤣🤣💙🤣 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
Doesn’t Daddy look great? PRAISE GOD, ERKEP came to see us and Ernie took Daddy and the kids out. I love this pic so much. Please continue to pray for Daddy and Ernie’s health. We are all depending on God’s grace daily, and although we get super tired, and don’t fully understand how to work within the parameters of our bodies yet, His mercies are new every morning. We are Tans. We’re like, LET’S PUSH the ENVELOPE! But the realization is, there’s enough energy to do what God wants us to do. The trouble is discerning what exactly that is, bc that also includes rest. Please pray for me, too. Updates: (1) my R ear hearing continues to change very subtly. There’s a ton of Tinnitus noise. It’s weird, but okay. I am keeping in touch with my AuD team. (2) My back, shoulder, and leg pain have settled down, and my dreams no longer require meds. I’m making great progress in my Mental Health work. (3) Pelvic pain present for 1.5 months. Got the full work up, but still no solution. Full monitoring will take another 3-4 months. (4) While getting the full work up it was discovered that I have a TEENY TINY bit of permanent structural change in my lungs. The bottoms of my lungs do not inflate properly. Apparently they got a little smushed at the onset of my illness (14 days on vent). This was a bit of a downer, but then I remembered that David and Randy trained me assuming I had 100% lung capacity, and are adamant that I control my Heart Rate and maintain performance through breathing technique while under physical and mental stress. They SERIOUSLY stress me out on purpose and then show me my HR to prove that I can handle stuff if I breathe according to their teachings.😑 I fuss a lot, but I’m so grateful for them. And then I realized that there will be a lot of people running around with lung changes after COVID. Praying for the people who are sick, and praying/thankful for the Medical Pros who are treating them, and treating the rest of us who have non-COVID issues. Thank you for helping us. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
PS. Shout out to Cousin L, who brought me these cookies a year ago and said we had met like, 20 years before. I had zero recollection of this. He was right.
Such a lovely quick visit 💗. @sarahshandmadeicecream opened a new location – Wildwood 🔥 @jokhouri and I love it there 💗🍨. We are very grateful for our family. I have been adjusting to meds and hearing changes – not cool. But my people are all over this!! Daddy has had good appointments so far, but is getting more imaging for his neck. Ernie and family are ok 💗😊. Please pray for continued healing and strength for my brother. #avmsurvivor #strokesurvivor #learninghowtolive #lifeismysport #shreddedgrace
A precious friend sent me this bracelet. Everyone, thank you for your kindness!! 💗 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace #asl
Ezra asked why I was practicing my #asl at dinner Me: Because I’m losing my hearing. Ezra: Don’t worry, Aunty Ning Ning. I’m gonna get a phone and I’ll type everything to you.|| I am no longer a Cochlear Implant candidate. It would be fantastic for my hearing, but I cannot risk getting dizzier. My internal equilibrium has been in flux since this started in Q418. I became officially deaf in the L in Q220. This is permanent, there’s no reason why this is happening right now, the scope of my original #TBI makes all outcomes uncertain, but I’ve done my medical duty, my people are THE BEST, and presently there is no Action to be taken. My R ear has officially started changing, and I have seen my AuDs and reviewed the protocol. I have a 100% accuracy rate in discerning changes in the past, and the current change is mild and merits no intervention. This new level of Hearing Loss and the non-possibility of a CI mean I am pretty stressed out. My lovely Neuro said it’s messing up my muscles. I have been in a TON of pain, but have access to equipment/strategies to help myself at home. My Psych re-started my PTSD dreaming meds and boosted my anxiety meds bc I’m dreaming again and compressing my voice box so that growth is aggravated. My other MHP’s are ALL OVER helping me deal with all these changes. I now need a Hearing Aid in the R ear, but am becoming better at understanding inaudible communication. Prayer Requests: PRAISE (1) I’m in pain, but I can still walk from one room to another whenever I want. Today is my 9th Walking Anniversary and I am NEVER GETTING OVER IT. (2) I have SO MANY resources to deal with pain, anxiety and PTSD compared to last time I was dreaming bad things in 2015-16 (3) I’m grateful these hearing changes are happening at this stage in the game. I needed to take verbal direction from my Therapists early on otherwise I would have not made rapid progress. (4) The Lord has prepared me to deal with any number of outcomes here. It is sad sometimes, and rather daunting, but every scenario is a COMPLETELY WORKABLE situation. ||PLEASE: Grace. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
They took me to the AuD last week and we met a Therapy Bird! 👍 please pray for Mommy Daddy as they visit with the Vascular Surgeon today. Daddy also has several upcoming appointments 💗💗💗 #strokesurvivor #brainaneurysm #😑
We had a lovely visit from ERKEP. My brother looks good and RKEP are as fabulous as ever. Please pray for their MI house hunt, that Ernie will continue to gain strength daily, and he will get set up with his MI doc (referred by his Penn cardiologist); of course there are the requirements of daily work and school for all 💗💗💗. We are so pleased to say goodbye to this harrowing Summer – let’s be real, Summer 2019 was pretty rough for our family, too – and welcome Fall together.
Praise God, Ernie’s blood 🩸 cultures came back 👍 (negative for infection) 💗😊🙌. WOW. Pls continue to pray… (1) Ernie gains strength. They are safely in MI, continuing to adjust and house hunt (2) Daddy is Daddy 💗 and we’re doing the usual round of check ups and imaging. Praise: his steps are steadier! 🔥 (3) “O” got his NG tube out and there’s a ton of healing and adjusting and resting to pursue 💗 (4) I am praying about Cochlear Implantation. I’ve done a lot of research, my team is top notch, I’m VERY uncomfortable as-is, and I admit I have been carrying a MUCH heavier cognitive load for the past 20 months. It’s not just inability to hear, it’s proprioception, hyper vigilance, overall mobility, the additional
tax on my problematic vision, etc. I’d love to gain some relief from this new device, but the nature of my TBI makes outcomes uncertain for me even though CI’s in general have extremely positive outcomes. Please pray for wisdom and courage for me. || Ps. Examples of Cognitive Overload: trying to disembark from a still- moving car, inability to name the days of the week or months of the year with accuracy. FYI the car thing first happened with Boo Boo. She was NOT HAPPY. The second time was with mommy – she had to convince my for two minutes that I needed to close the door so she could actually park the car. I was like, Nuh- uh, Mommy, C’mon. Don’t worry – I have safety protocols in place and have reviewed these incidents with my Neuro.
Look – Ernie is grilling!!! Yes, that’s right – MY BROTHER – the one you guys prayed for so earnestly. 💗 Thank you so much. We enjoyed a week together and now ERKEP is driving to MI as we speak. Please pray: (1) ERKEP – safe trip to MI, house hunt, and **that Ernie’s blood cultures will test FANTASTIC this week 💉🩸💗** (2) DADDY – misc appointments and follow up (3) “O” got discharged and is transitioning to his new home. Please pray for comfort and that he will be cleared to swallow, and grace for his Caregivers as they transition, too. (4) ME: having a rough hearing adjustment. Cochlear Implant intake is Monday. Meanwhile, my throat feels better – stuff still gets stuck if I’m not careful, but it’s a real relief 👍 Thank you! 💗