Shhhhhhhh!

Saw the Neuro Otol today and got a script for Vestibular. Andy Frankenstein and M37 did Vestibular. So does DLee! Woo Hoo. I have 3 outstanding Rx: (1) PT – Vestibular (2) PT – L Hip Rehab (3) Occupational. I will schedule these once I procure (non)medical companion care as appropriate. Please pray (1) For the provision of help so I can receive treatment (2) My adjustment to a quieter world, (Yes, I have one good ear, but Hearing Loss is one of many things I’m dealing with, e.g. It sounds like I have a vacuum cleaner in my head, also, one sided loss means I cannot verify the direction of sound, which is problematic from a PTSD threat assessment standpoint) (3) Mommy Daddy are jumping through the final hoops for Gall Bladder removal. and THANK GOD: for my friends – my Wingman today sent me a typed summary of the visit. And my friends, who used to carry my wheelchair up and down the stairs before I could walk, take special care of me in parking lots and in navigating new clinics bc they know I need more help. And I continue to be grateful for such a skilled and compassionate medical team. Yes, uncool stuff is happening, but the Lord has given me a TON of resources. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Thank you!!!

Thanks for praying. That Really Hard Thing ended early – so we are going to see Sister Maria today!!! No results yet – they will take a couple months, but X’s responsibility is over – all the hard work is in the rear view mirror. Girlfriend got spirit, that’s what. She did not back down and it was immensely gratifying to see – she did great. It was wonderful for me to participate in this process – We have been friends for 20 years with a long hiatus around when I got sick. But it has been one of God’s choicest gifts to me – bringing X💗 back into my life in 2018 😊. And you should see how she takes care of me 🤣🤣. Of course Imma take her part, too 😑. Over the past couple days we were conscious of your prayers and were so grateful for a heightened awareness of God’s presence. Even in scary, difficult circumstances, it is wonderful to be with the Good Shepherd and I rejoice to be under His authority, care, and protection. I bear the unmistakable marks of Trauma on/in my body, but I have been informed that I also have the conspicuous bearing of a Daughter of the King. Complete strangers in the hospital started noticing this while I was still asleep, and I have gradually been told of their observations. I ignored it for a while bc it was kinda weird. But I realize now that if people could tell I’m different when I was still asleep…that’s a good thing. And I LIKE being different. The God of the universe knows my name!! 🔥💗 And you know what? He knows yours, too. 💗💗💗 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Prayers – A Difficult Task W-F

The BPNA is going so well. My Guys are more than equal to this – they are grounded in the fundamentals of kinesiology and I respect their knowledge and follow their teachings. I just let the sass out bc this entire situation is ridiculous (truly, we are doing serious work, but they are still hilarious), but also to let them know in code that I’m scared. But progress is happening 🔥. Please pray for continued results and ESPECIALLY: my friend X💗 has to do something really difficult Wed – Fri and I am accompanying her. This is a path aligned with God’s principles, I believe in what she’s doing, and I am HONORED to stand with her. But it’s still so hard – it will be a grueling 3 days physically for me, and emotionally for her. We have devoted time to spiritual preparation for this, and thank God that He is our portion and makes us ok regardless of outcome. Please pray for grace and protection.Its GAME TIME. Thank you!! #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

32%

I scored 32% accuracy in L ear speech recognition yesterday.  I was in the 70’s only 3 weeks ago.  I was DEEPLY INSULTED 😑, but it’s fine, I promise. I am waiting on more docs and test results but do not expect any material info, so I launched my Building Neural Pathways Agenda (BNPA) last week.  It’s going SWIMMINGLY.  I said, I need XYZ feedback from you so I can learn to manage my movement and increase spatial awareness given these new parameters.  I believe in the clear communication of goals and expectations 😑 and although no one is happy I’m dealing with more stuff,  God have me people with the vision, expertise, and willingness to try my experiment with me.  🔥🙌 PTL I knew how to take direction in a gym beforehand and I woke up with a teachable spirit.  In addition to hearing and balance, I’m dealing with girl issues 🙄😑 that are exacerbating it but are being addressed.  The sensory disruption made me unstable, bumping into things, almost falling a lot, having trouble managing my chewing and swallowing.  The testing was + problematic from a PTSD standpoint.   But it’s settled down and I’m a different headspace bc of my BNPA.  FYI the BPNA was my idea bc I was getting frustrated 🤣🤣😑😑 I’m pleased w this experiment so far bc having a plan and being supported makes me feel better.  And training has been successful – I’m getting really helpful coaching and form adjustments that boost my mobility with less reliance on visual and auditory cues.  This am Mommy told me I’m playing the piano louder.  That’s bc I have to isolate the melody more bc I’m having trouble distinguishing some tones 😢. I’m not concerned until I start talking loud like Uncle Bill.  I miss him so much 💗.  Thank God for people who choose to be your family. Please pray (1) Imaging and final clearance for Daddy’s Gall Bladder removal. (2) Strength for Mommy (3) Successful BPNA and energy for me EVERYTHING takes more effort. (4) Logistical help for me – exploring options (5) Wisdom in choosing the right treatments (6) Return to OT – I want my kitchen mobility back 😞|| Thank you to my kind friends who have assisted me in driving and navigation – I really appreciate it. 💗

Thank you!

Thank you for praying for me!! My friend from elementary school took me to the test and Mommy collected me. It was harrowing only bc the reactions they induce and measure are fraught with significance for me. But the lady testing me was FANTASTIC. And now I get to see Trainer D and tell him all about it! Thanks so much for your prayers 💗. Mommy made these cookies last year. I forgot to photograph this year 🤣😊. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Pls Pray: VNG tomorrow morning 😑👂🏽🧠

Hi! Please pray for my VNG test tomorrow morning. It’s supposed to she’s light on my inner ear and brain. I have been feeling poorly, and have been poked and prodded a lot lately, which gives rise to inconvenient memories in addition to being physically uncomfortable. I have had more trouble with navigating space and have gotten a few bumps. Re the memories, don’t worry – I took my Trauma Treatment to the next level in 2019 with EMDR (at the behest of my people 😑🤣) and the situation is being worked. My mental health pros are coaching me on how to handle all these developments healthily. Please pray specifically that (1) they get good data (2) getting good data doesn’t agitate my system even more. Thanks! #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Charlie Brown Teacher Thing 🦻

Uncool hearing changes this past 1.5 weeks 😑. My Neuro ordered more testing next week and I had a 1.5 hour imaging session on Friday. I’m a pro at imaging, but this one bothered me a bit, but I was well looked after by the staff and especially D, the lovely driver the Lord gave me in March ‘19 when Daddy got sick. I need more assistance now bc of all the sensory interference. C took me to the AuD on Wednesday and made sure I was ok in that APPALLING parking lot 😑. I was sitting in the sound booth wearing two devices my AuD knows I abhor bc they hurt the hole in my head 😑 and I was like, SERIOUSLY?!?! We talked about this. And she was hilarious, Like, It’ll just be 2 min !! And she shut the door on me really fast 🤣🤣🤣. She was intent on getting good data and knew my skull is just fine despite the hole and I’m grateful, I just fuss for fun. At least that’s what I told the MRI guy 😑. My hearing changed. It’s changed like 3x in the last 11 days. C, we might have to go back, please 💗😑. But this is actually a PRAISE: For several days I had this extremely loud Charlie Brown Teacher thing going on when hearing speech (yours or my own) and extra discordant tones when listening to music or playing piano. This has settled into hearing loss plus very loud additional interference (white noise), but I prefer this bc I could not distinguish between the discordancy in my head from a minor chord. Given that I cannot use my eyes to read music, the loss of reliable audible feedback was daunting. I will take this more stable loss with gratitude – please thank God that i don’t have to adjust to that appalling discordancy and pray it stays that way. And pray for good leads in rehabbing my functionality, and the other stuff I’m getting checked out.

Dizziness, Nausea and depth perception issues are hindering or completely shutting down some ADL’s. 💗💗💗 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

More Stuff to Learn 🔥 – just gotta dig in….

Although it’s not perfect, the stent in Daddy’s R carotid is deemed “acceptable” so we don’t have to talk about it for another 6 mo.!! Thanks, Dr. C. 🙂 Priority now is getting him cleared for Gall Bladder Removal. I have had my own health developments, including more Hearing Problems. I’m getting the full work up and seeing ALL my peeps. Not only is Team Tanimal highly skilled, they are hilarious and great people as individuals. THANK YOU to my friends who are driving me in this busy season. I will be getting more images and tests. I’m going back to Occupational Therapy. Although the hearing and sensory distress may prove to be permanent my functionality can be rehabbed. I’m actually very hopeful about this – it’s like what I told Matt Hankey – we will ALWAYS be learning. There’s a ton of information on how to deal with another level of deficits that I have not explored yet. Thank God He taught me to identify giftedness and recruit it in my favor before I got sick. I have never been a subject matter expert. But I know how to find them! Also, these challenges make it more difficult for me to navigate the world, so I’ve lost confidence, stamina, and mobility in the past year. Summary: PRAISE: Daddy is ok and we both have wonderful people to help us, starting with MOMMY xxooxoxo PRAYER: 1. Daddy will get his GB removed 2. My testing and imaging will yield helpful results 3. The Lord’s provision (time, people, insurance coverage, transportation) for the treatment and logistical care I need, and that He will restore and grow my abilities.#avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

Every Step is a Choice – MATT!! 🔥

Matt took 4 consecutive steps yesterday. 😳🙌🔥😢💗😳😳😳😑. I feel NOTHING about this situation except to say that it is an honor to watch it unfold. He can also now use his upper body to push himself up from lying flat to sitting, AND can transfer unassisted. These are HUGE quality of life gains and incredible physical accomplishments. I wrote in my first book, “Every step is a choice.” 8 yrs later, this is still true. You must bring heart, grit, and a ton of effort to the table to make movement happen. But the choice is harder in the beginning. You’re on your way, Matt. Congratulations. Keep choosing to put one foot in front of the other. Please Pray (1) for Matt’s mobility and the Logistics of Life (2) Thank God for the people who choose to help us. Pray for Diahanne!! 😊 to Help Matt Walk again, go to ShreddedGrace.com and click on the Magic Wand. Link in Bio. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace @hopeforhankey

Merry Christmas 2019

Look at this mobility!! 🤣🤣💗💗 Can you see my reflection? My R hip flexor is better, PTL. Thank you so much for praying – even though the L is obviously still torn and it’s been kinda dicey with pain, nausea and dizziness, it’s SUCH a relief for the R to be okay. Plus, seeing my family, especially my precious nieces and nephews is a wonderful distraction and I honestly think I’m getting better, anyway. Mommy Daddy are glad to see the family, too. There’s a lot of cookie action going on 🤣🤣🤣. Thank you for praying for us 💗. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace