Today is my 11th anniversary of walking. I cried buckets in secret leading up to it bc I was TERRIFIED. Andy Frankenstein had been preparing me for the day he’d make me walk outside the parallel bars and without holding his hand. 😑 To be clear: I practiced unsanctioned walking when Andy/Mommy weren’t looking, and it was thrilling. But the idea of actually walking in the prescribed manner more than 3 feet and without assistance was APPALLING. So Mommy Daddy took me in my wheelchair to see S, and I chose this ring. She said she’d keep it until I learned to walk and on the day Mommy called her she said, We have good news. And engraved 9.21.11 on the inside of the band 💗. I was still terrified, but highly motivated by jewelry to take my first steps. In the end, Mommy caught me crying in bed one morning when I had just worked it out with the Lord. || By His grace, He wanted me to *try* although I was scared. || I knew it was possible within the scope of my injury. I just didn’t want to cry in front of Andy Frankenstein 😑. So one night I took matters into my own hands (feet) and defined “walking” as 1 round around my kitchen without touching anything. Round 1: I fell. Round 2: Slowly and haltingly, I MADE IT 😭💗🙏💗. And then I sat down to write to Dr. Dogan, who saved my life, and said, Now I’m going to learn how to run. || THANK YOU for praying for my Swallow Study MBS. I CRUSHED IT 🔥. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
THIS is what #hypervigilance looks like. When I was not in the bed I was sitting bolt upright, eyes fastened on the door. 😳😑😳. But after the first 15 hours I relaxed a bit. And I could not brush my hair bc of the wires. See my white stripe from the drainage catheter? It’s grown out well. THANK YOU for your prayers and kind words. My doc and the Sleep Ctr made sure I got GREAT techs. NOTE: *always* ask for accommodation. Say what you need. My techs “got it.” And although I was obsessively staring at the door most of the time I did not scream once. I’ve always had a high startle response, but lately there has been blood curdling shrieking at a level beyond the usual screaming. …. Ok, I did scream once, but it was in my dream, so Im not counting it… As I’ve lost hearing Ive become more sensitive to the vibration of the walls, floor, door – so as to better ascertain if anyone is approaching. 😑 But my MHP’s prepared me so well to anticipate and tolerate discomfort. Every time the Techs woke me up I was ready. THIS is a huge praise. Although I’m not sure of the impact of my PTSD etc on my sleep data. I already told my sleep doc, this might be the most boring test ever bc all you’re gonna see is me like, 😳. But I DID fall asleep. And I thank you again for your kindness. Now I’m getting ready for my Swallow Study!! #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
Prayer Request: My Mental Health Pros are SO GREAT at helping me prepare for stressful medical things. This is the sign I’m posting on my door tonight. It says EXACTLY how they can help me. I have a MAJOR problem with people coming into my space and my Hearing Loss makes it so much harder and scarier. FYI, it took up to much space to say I’m deaf in the L (SSD) so I went with #DeafDisabled and #HardofHearing. These are good terms to know. I’m also #LateDeafened and I have #PTSD. The term “hearing impaired” is not accepted in the community. As a latedeafened person, I’m learning so much! Please pray for (1)My safety and comfort (2) Good data in these tests.
Mon: Overnight sleep study
Tues: MSLT – Daytime Sleepiness test
Wed: Modified Barium
Swallow Study – for the dysphagia
Xoxo thanks. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
Thank you for the encouragement, @nickcross !! It’s been a hard few weeks. Many things have started malfunctioning in my body, but I had flattered myself that my kidneys and liver were 👍. Now I have kidney stones and a weird bile duct. I’m being tested in the context of these and MANY more seemingly disparate symptoms. Next week 9.19-21: Sleep study, MSLT (daytime sleepiness), MBS (Modified Barium Swallow study). I have dysphagia (trouble swallowing). I put myself on a mechanical soft —> almost puree diet months ago. note: cake goes down the hatch just fine bc the frosting pushes it down my esophagus. My kidney stones are large enough to merit intervention, but getting in to see a specialist is really hard. I have a doc booked for Oct 24. But praise God, my pain has been ok, although I’m still struggling with increased spasticity, muscle rigidity, and gait decline. And my 🫁s have been bothering me. But I’m ok! Emergency plans exist in case anything gets out of hand. Please pray for courage as I face more testing and thank the Lord for daily bread 💗. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
Thank you praying for my test on Friday. It was easy. The results were normal. I don’t want anything to be wrong with me per se, but “normal” test results do not help diagnose the many things that are already not functioning properly – even taking into account my 🧠 injury baseline. Please pray for me and my docs as I seek additional testing. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
I’m just sayin’ – if Trainer David had explained Bioavailability to me I would not have fought him on Day 1. … JK. We all know I would have, anyway. It’s more fun for all of us. 💯 This is Jess, my dietician. She is married to Trainer David. I met him in 2013, and our first fight was about the amino acid profile of Hemp Hearts. 😑 I’m STILL mad about that. 😑. I was vegan at the time, and I LOVED BEING VEGAN. But when I met David he explained that his plans for my physical fitness would likely require me to eat animal products. Eventually I conceded bc I was unable to consume the quantity/quality of food necessary on a plant based diet bc I have a lot of food issues. When I actually STOPPED eating most real food due to stress in 2014, David called me out bc my declining performance in the gym was incontrovertible evidence, and he made me go see Jessica. I think this is her “Professor” voice 🤣💗. I love the info she’s sharing – it’s easy for me to take in. Seriously, this just makes sense to me, bc the concept of bioavailability is scientific fact. It was a big decision to consume animal products again. I started with a little dairy, then seafood, then meat, but only if Ernie grilled it 🤣. But it allowed me to prioritize building strength to face life in the context of how my body works. Expert guidance and knowledge of how my body could take in and use fuel was key. For trustworthy nutritional info, go to @jess.murgueytio.rd And to push and shove with Sister Maria – @letstrainrockville -Tell him
Bossy Smurf says, hi. Trainer Max is also there, and is also fantastic, fyi.
Sorry I bled on your machine, Dr. Cheryl 💗.
See the boo boo on my elbow? Andre caught me bleeding on the @alterginc. My left shoulder was subbluxxed post AVM and has remained vulnerable to dragging even though I wear the chassis low. I tried to fix it and did not know it was bleeding until after the fact. Don’t worry. Andre patched it up and the the AlterG is nicely sanitized. Earlier, @sdpphotostudio let me do fun things! 🙌 And Dr. Cheryl @powherchiro did the Vulcan Death Grip!! I’m having many issues. 🙏 please pray for HELPFUL Testing Friday. That leads to resolution 🙏. NOTE: I’m having Facebook difficulty. I can’t comment back to you, but I see you, and I appreciate your prayers so much 💗 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
Skin Biopsy Results: abnormal nerve things going on in L ankle. This is a surprise to no one. The L ankle has always been very vulnerable. This test was for #Dysautonomia related small fiber neuropathy. You guys very kindly prayed for my pain mgmt bc I had a hard time recovering from the procedure in July. 💗🙏💗 thank you. And thank you to my wonderful friends who took me to Hopkins and took such great care of me. Please continue to pray for my pain mgmt. I’ve had some super rough nights. Thank you xoxo #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
I finally have GOOD news to share!! I gained Skeletal Muscle
Mass in the last year even though I have felt increasingly awful. SERIOUSLY. This is my biggest muscle gain ever – 134% of my biggest YOY gain at the height of running/training 5x/week. This past year I saw Dr. Cheryl @powherchiro and Andre @sdpphotostudio 1x/week and just tried to move. I often had to stop bc Of breathing or balance, and we’ve been really careful. So I was SHOCKED when my doc Showed me the numbers. And i confirmed that fancy scale does not lie. I started losing muscle in mid 2018 – my gait broke down, David kicked me out of his gym, I did not tell D I was still seeing Randy (SOMEONE had to look after me!) and Randy LITERALLY badgered me into going back to PT. I finally agreed once I became unable to stand for the duration of my extensive personal grooming routine. 😑. DLee @drdavidleedpt @fyzicalgermantown reworked my gait (thank you 🔥), and I ran my first mile in the @alterginc, but I had to stop bc I started losing hearing and got Sea Legs. Sniff Sniff. Now I see Dr. Cheryl and Andre weekly, but I grieved as I watched my quality of life decline, and still tried (often unsuccessfully) to run and move. Such a large gain in this context is a gift from God. I was prepared to receive news that I had LOST muscle this year. But God made it so I had my biggest gain yet. The important thing is that even in the midst of physical decline He has been communicating truth, strength and hope to me and above all: His care FOR me. 💗💗💗 “He restoreth my soul,” in the presence of physical weakness (Ps 23.3) – it’s just that He also decided to surprise me with +muscle mass in a way that makes zero sense to me except that He brought my consistent attempts to fruition. This has fired up my chi enough to embark on the further medical investigations on my to do list through November. It’s a long list and includes more #Dysautonomia testing, and a special swallow study. I started a #mechanicalsoft diet a few months ago.
#avmsurvivor #strokesurvivor #learninghowtolive #lifeismysport #shreddedgrace
See that crumpled up piece of paper? Those are the post-procedure instructions I was supposed to be paying attention to, but I just stuffed them into my purse and found them several days later. My bad. I went to Hopkins for a #Dysautonomia test – a skin biopsy for neuropathy. I have all the symptoms of Dysautonomia, but I started instinctively doing all the lifestyle management stuff last year, so the testing is for info only and will not impact treatment. But my symptoms could also be brain injury or something else, which is why I have to do formal testing (I’m still scheduling). THANK YOU to my friends who took excellent care of me bc I was super skittish and they made everything easy and fun 💗. My Nurse Practitioner could not have been nicer or more helpful. I disclosed that I’m 1/2+ #deaf and #HoH and have #PTSD etc, and how she could help me. She immediately raised her voice, maintained excellent eye contact, kept on explaining what was going to happen, and reassured me I could say, STOP, at any time. 🙌🤟🥺. It was hard in a flashback sort of way, bc I had to lie on my side on a table and that’s a problematic memory for me. 😑 fyi, all my appendages and the L side of my face have been tingly/numb since my AVM. I thought lotion would solve the strange sensation. My skincare and bathing routines had been cast aside for MONTHS. Clearly, I thought, getting back on track with applying lotion on my arms and legs would solve this problem. 😑 I was disappointed to find out I was mistaken. But it was a low priority symptom and my lotion smelled nice, so I just moved on. Right now I’ve got 3 tiny holes in my leg. They’d be nothing to an able bodied person, but I’m having a really hard time. The one near the hip gets especially sore as the day wears on and triggers other pain. This morning they were all bothering me, plus my breathing was very uncomfortable. So I took meds, propped up, and am sleeping more. Please pray I will bounce back asap. Although I haven’t been feeling very bouncy for a couple years. These yellow orchids from my Aunt and Uncle, however, are helping 💗🙏💗.