Prayer Req


Hi! Please pray (1) that Daddy’s Angiogram May 9 will go smoothly and he will recover quickly- the Surgeon will decide on how to address the aneurysms after this procedure . (2) The right people (I have a First Choice) to help me. My hip, back , and breathing got messed up – probably a result of all this extra stress and physical strain since March, concurrent with the hearing loss and everything that happened. I received STRONG DIRECTION from my Neuro after she saw my gait Wednesday that although David and Randy have been supporting me well, I must take formal action. 😑 Thanks, Ning
Ps. In case I forgot to tell you, in q418 I experienced sudden hearing loss with a relentless heartbeat sound and multiple other constant interfering noises in my L ear. Extensive imaging showed zero structural cause for alarm. At the same time I experienced balance loss, gait regression, pain, more sensitivity to sound, and other Stuff involved in adjusting to this new state. I was having rather a tough time of it, but thank the Lord I got a fabulous hearing aid and my people coached me through how to grapple with life through these mobility disturbances. However, I was formally diagnosed with a retorn L hip labrum two days before Daddy’s event. I made the decision to leave physical Therapy and put the past 5 years of training into practice (house activities take a ton of physicality for me) and my people promised to help me fix the damage after I did what I needed to do for my family. I think now might be that time.

Thank God my body hasn’t protested more than this, and that Daddy’s event distracted me enough to really force the issue and help me adjust (gait, balance and nausea are better) but mostly that Daddy is doing well 💗💗.  

Thank you for your prayers and for the lovely friends who have driven me to necessary appointments.
___

This is what happened after my Neuro saw me walk:

Doc: 😑 So what do you want to do about it?

Me: is nothing an option? 

Doc: Don’t look at me like that.

Me: I’m not looking at you!!! I’m obviously looking away evasively.

Doc: so call me after you’ve done this a while to tell me how you feel.

Me: WAIT – this isn’t a one and done deal? (Internal: I’m not calling you.)

Me to MA taking notes: Dude, are you writing this down? Please don’t write that down. 🤣🤣🤣

Doc: if you let it lock up more you will lose ROM and it will be harder to fix later. Your neck and shoulders are tighter than usual (which is saying something). Weekly Medical massage for a month. Also, you will eventually need to work on the tears in your hip. 😑

Me: I am allergic to everyone. 

Doc: you need to do something about this.

….

So then I ruminated for 10 minutes in the waiting room on whether or not she really meant it. I admit that since she wrote it on the order, she might’ve meant it. Also, the MA wrote it down. So she’s going to remember.
Don’t worry. I will follow orders. Waiting to hear back from the A-Team to see if her schedule permits 💗🙏.  If you’ve been reading my blog for a long time, the A Team = the ONE AND ONLY Gen 🙌🙌🙌

#avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #brainaneurysm #medicalmassage 

Introduction


Thank you all for your kindness. This is an intro for new friends who might be confused by my hashtags. My name is Ann/Ning. I survived an AVM Rupture and massive stroke in 2011 right after I declared my intent to move to Africa as a missionary. I lived, but am now permanently disabled. Now I write and speak about Survivorship and Recovery, as well as the spiritual implications of what happened to me. Www.ShreddedGrace .com || Daddy had a stroke in March ‘19. He has two aneurysms and multiple blockages impeding brain blood flow 😑. Thank God Daddy is recovering well. I get a lot of my hardcoreness from him, but let’s be real – Mommy is what’s what. We all agree. Prior to Daddy’s event I was adjusting to sudden hearing loss, major balance disturbance, crushing fatigue, gait regression, accompanying joint pain, and other Stuff. I received a new script to re rehab an old injury (L Hip #labraltear s), but my own PT is on hold bc I’m hanging out with Daddy. I’ve ignored many problems semi successfully and actually seen gait/balance gains. But my strategies (control of rest, light, and sound) for coping with the hearing loss and additional sensory interference have been disrupted. I am already #hypervigilant – you can imagine that Daddy’s event has only exacerbated this as well as the things still wrong with my gait. And yet, I trust God with Daddy’s safety while I do what I can to make sure Mommy is okay and I don’t injure myself more severely. Obviously, I can’t do a WHOLE lot, so trusting is the best option, which I should be doing anyway. My siblings and their kids have rallied around Grammo and Grampo and keep us smiling and functional. PTL I found a couple drivers to take me to the bare minimum appointments – David (Personal Trainer), Randy (Athletic Trainer), and my Mental Health Pro. JN comes weekly to clean and make sure we are behaving. I 💗 her. Ed Blueberry just celebrated his 88th birthday. FYI he is never going to die, he just stopped aging. Shirley is 6 forever. Thank you for all your prayers over the years. #avmsurvivor #strokesurvivor #brainaneurysm #lifeismysport #learninghowtolive #shreddedgrace

Angiogram May 9

Daddy had a great appointment with the Neurosurgeon. After the Angiogram on May 9 she will decide on the type of procedure for the aneurysms. Although his MRI revealed another event after he came home, 😑she did the standard in office vision and motor post-stroke testing and was pleased at Daddy’s progress and optimistic about his recovery. We are very grateful to the Lord for this prognosis, your prayers, and that Daddy started Outpatient Rehab this week. We had a great PT intake yesterday. Please continue to pray (1) that we receive accurate and timely information – this has been a problem since the original event (2) Daddy’s continued treatment, procedures, home exercises, and recovery.| ps. The NeuroSurgeon also worked on Emmy, who is doing well, PTL 💗 #strokesurvivor #brainaneurysm #shreddedgrace

Level Changes and Lateral Movement 🤼‍♂️

Can you see the moon rising? 5 months ago I was terrified of walking on the street bc my balance got so bad. Even the driveway was iffy. Today I either don’t care, or I adjusted successfully. Technically, walking outside of our driveway is not an officially sanctioned unsupervised activity. But in these circumstances, no one is around to stop me 🤣🤣🤣 but don’t worry, I was careful and brief. I still fatigue super easily. But I was very confident and managed my level changes and lateral movement like a champ in order to get the right angles. Thank you guys and @fyzicalgermantown #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

You’re like a pro 🤣🤣😑


Daddy walked outside yesterday w me and Boo Boo. Ernie started this practice 🤣🤣. Daddy did great, but within ten minutes of very slow walking my hips were SO SORE 😳. David immediately did some exercises and stretching to help me out. He had a complicated explanation about my ligaments and summarized, DON’T DO THAT 😑. Me: Ummmmm, that’s your advice? 😑. Yesterday I made Randy explain the mechanics of the side lunge. I get the most compliments on my form when I do a side lunge bc I’m pretending to be him 🤣 but I do it this way bc he said so, not bc I understood. Now I get it. I asked bc I think about this movement a lot when loading the dishwasher. A couple weeks ago my family saw me and Daddy doing his home exercises. Later my niece said, You’re like a Pro. Me: I’ve been well trained myself. And I use all the same lines 🤣🤣🤣. These movements impact my daily life, and I’m so glad to keep Daddy company during his Recovery. His neurosurgeon appointment has been rescheduled for next week, and he gets a 💗 echo on Friday. Pic: my friend, Matt!! He’s my other tag besides my Medical ID. I took this at the gym this morning. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace #brainaneurysm @hopeforhankey

Prayer Request: the Path Forward


We got Daddy a new 🧠 MRI yesterday. It was incredibly beautiful outside. A sweet lady saw me taking pics in the parking lot and was SO CONCERNED bc I had to lean against a pillar🤣🤣. Mommy picked this violet for me. That’s Daddy sitting in his transport chair in the background. Boo Boo posted a prayer request for “the path forward” after it was clear I’d live, but while I was still asleep. Daddy shared this prayer request while we were in the waiting room. || Please pray for the Lord’s continued overruling as we meet the Neuro Surgeon next week and consider how to address the aneurysms. We are getting 💗 images, too. Thank you for your love and prayers. #strokesurvivor #brainaneurysm 

Our new routine…and prayer req


UPDATE: Daddy is doing well at home. It has been 3 weeks since the event and we continue to look to the Lord as we take it one day at a time and find grace renewed daily. We are settling into a routine of in-home Rehab (PT, OT, and ST) with plenty of home exercise. We have other appointments, too, and are so busy we are not receiving Visitors but remain so grateful for your expressions of love and care. Please pray (1) Daddy will graduate to outpatient Rehab in the coming weeks (2) Successful mastery of independent walking and stairs (3) Further imaging – 💗 and 🧠, and meeting the NeuroSurgeon. (4) Strengthening and appropriate rest for all of us. #strokesurvivor #brainaneurysm #shreddedgrace

Resolution and Request


I saw D and R 2 weeks ago, right after Daddy’s Event 😑. Randy looked at me like, 😳 [blink blink]: What do you need? Me: This is gonna be like that time you caught me sleeping on a table instead of running and you said, We will do whatever you need afterwards (RandyCode: if you are bleeding, unconscious, your leg is falling off, I WILL FIX IT 😑), but I want you to run longer on Monday. || I DID run longer that Monday, and this time Randy made a similar promise. DAVID 🙄🤣🤣. Next Day – Me: D, c’mon – I need to practice carrying around some heavy stuff today. D: YOU ARE NOT CARRYING ANYTHING. 😑 Me: Well then, How are you going to build my confidence, SMARTYPANTS?!?! D: We ALREADY BUILT your confidence. That’s what we’ve been doing this whole time. You’re strong, and you know it 😑. Me: okay, fine. 😑😑😑 || These guys 🤣🤣. Update: **I’m declaring my balance problem that appeared simultaneously with the hearing loss q418 as Resolved.** My gait improved 3 days ago. It was forced into resolution by my desire to assist Daddy in navigating some crazy new spaces. The Guys have coached me – R 🤼‍♂️: the low man wins, pay attn to level changes and lateral movement. D: spread the floor with your feet. I had a couple fantastic mobility days, but my hip started getting grumpy again, and the R knee got sad. Had some weird spots appear on legs, but that happens, and they are fading. Request: I heard a couple funny sounds in my R (good) ear, similar to how the L started. If my R ear goes, I’m toast – it becomes dangerous bc I won’t hear alarms. Right now I’m fine, though bc I have one great ear. Please pray it stays that way. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

My BP is so fabulous 🤣🤣


Daddy just finished PT. 🙌 I asked David – ish questions like, when he does X, what muscles should he think about, and where is the origin of the movement? And then I heard Randy’s voice in my head during hip exercises. Daddy got a green Theraband. Randy prefers manual resistance bc the assumption is that he has superb kinesthetic memory 😑 and he adjusts as we go along. We had our OT intake, grab bars will be installed tomorrow, and we are also pursuing follow ups with docs. PRAISE: Daddy is standing up stronger daily 💗🙌. So grateful for Mommy, Siblings, and friends 💗💗💗 and the opportunity to pursue Recovery. Hilariously, my blood pressure is the BEST it has ever been 🤣🤣. I am in the Green Zone. I am NEVER in the Green Zone. That thing never has anything nice to say to me except once last Christmas it gave me 10 points “for trying.” 😑😑😑 I.e. i measured and logged it. Siri, Alexa, My Fitness Pal, and my BP cuff patronize me. My BP wasn’t even this good when my Vigilant PCP started meds 2x daily. I think it’s bc Daddy now has to sit there and let me hold his hand 🤣🤣🤣💗💗💗.  It also helps that I write books about this stuff, although for the record, I am APPALLED 😑💗.  PRAYER: (1) Good rest, especially at night for Daddy, and therefore Mommy (2) Daily exercise (3) Logistics of docs, help, space changes, new routines. Thank you so much #strokesurvivor #brainaneurysm #SERIOUSLYmyownfather😑😑😑💗