April 7 was the 11th anniversary of my AVM Rupture, and this has been the hardest anniversary for me, except for my first. Fyi, my anniversary stretches out through July 24, Decision Day – the day I decided that Jesus Christ is the Person He says He is. April 8 was the hardest bc it was within the critical 72 hours post surgery. I had 72 hours to “respond” or else they would consider “next steps.” My family arrived in Portland on Day 2 and were informed that I was “the sickest person in the hospital” and things didn’t look good bc a response had not been forthcoming thus far, in spite of the heroic, textbook efforts of kind nurses to elicit a reaction from me. The memory of Day 2, April 8, weighed so heavily on me last week. FYI, the body remembers EVERYTHING, especially anniversaries, even if you claim not to. And I remember A LOT more stuff than I’ m
saying 😑, which, if you’ve read my stuff from the beginning, you’ll be like, WHAT? she’s holding back?!?! 🤣🤣🤣🙄. Yes, well, I am. But as we celebrate Easter tomorrow, I am so thankful that God did NOT hold back. Christ stepped into time and died that cruel, humiliating, degrading death on the cross bc it was all part of the plan. Today we remember His Day 2. He endured separation in order to make connection *possible* for us. And on Day 3, He rose again, just like He said He would. And bc He endured the horror of being separated from the Father, on my own Day 2, and the 4,025 days that have followed, I have never been alone. #heisrisen #avmsurvivor #strokesurvivor #shreddedgrace #lifeismysport #learninghowtolive || p.s. bringing many sons to glory is a reference to Heb 2.10
Had a wonderful visit with my Dietician, Smurfette. @jess.murgueytio.rd @dmvdietitian | Recap: I stopped eating food due to stress in 2014 as I prepared to return to OR to give away my earthly possessions and visit my 3 Hospitals. I had gone to work one day in 2011 and never came home. My belongings were put into storage. Anyway, that trip triggered my PTSD. At the end of 2014, before I was diagnosed, both David and Randy knew something was happening to me. It was D who informed me that “I cannot diagnose…I can only RECOMMEND…” 🙄…he said I needed to go see THE PEACOCK. Me: GASP!! not the 🦚!!!! (Jess, his wife – her nickname). I was TERRIFIED. My relationship with food and my overall relationship w my body is…complicated…But Jess proceeded to introduce me to my PCP (at the same clinic) and reintroduced me to food in general. My needs have changed over the years, but Jess is always there to offer sound advice based on the latest research – practical solutions I can incorporate into my lifestyle. And she packages it with laughs, encouragement, and zero judgement. Body image is a topic I prefer to ignore or denigrate. But Jess helps me nourish my body in a way that nourishes my mind and heart, too. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
Me: [suspicious]. Are you gonna touch my eye?
Me: [hopeful]. Did you just say, no?
Doc: I said yes.
Me: 😔 oh. 😑. I’m going deaf. (FYI)
[through clenched teeth] I also have ptsd 😑😑😑
Earlier, the MA was reading my MRI report. Me: SEE?(Pointing to white stripe in hair) That report proves they put a catheter in my head right where the stripe is. CAN YOU BELIEVE THEY DID THIS TO ME?!?
Official opinion: what they did was necessary. Thank you for saving my life, @ohsuneurosurg @ohsu_brain !! And thank you to providers who have taken extra care to make sure I feel safe, even when I don’t have all the words to explain why I don’t. Thank you for treating this #ptsd and #tbi survivor with compassion, dignity, and your medical skill. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #hoh #ssd
Happy New Year! My medical vacation is officially over. 😑. I have to prep for Hopkins Dysautonomia intake and Neuro Opth later this month. When your health history is complicated, meeting new people is hard bc you have to tell them only the relevant info. Nurse P thinks my new doc rationale is HILARIOUS: let me help YOU help ME 👍. I’m also going back to my regular Neuro Op this Friday. I’ve had more discomfort 😔 it’s kind of a drag. Sending hugs and lifting up 🙏 for all my friends who are jumping through hoops and doing their medical duty. Also praying for the providers who care for us and others 💗😷💗. Ps. 🐅. ROAR 🐅 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
Me: So can you fix this without touching me? [hopeful voice, explanatory hand gestures:]. Perhaps you could use your laser vision (like Superman) ?
Dr. Cheryl: 😑… you know it’s weakness, right?
Me: [insulted. I fired RIGHT UP]. BOOOOOOOOO 😑👎. I called after her as she left the room 😑. She gave me therapeutic exercises. They helped immediately and I’m doing them at home. (My R knee was acting up). Dr. Cheryl was supposed to be in her office treating someone else but she came out to check my form and caught me goofing off. 😑 SHE WAS SUPPOSED TO STAY IN HER OFFICE.
Dr. Cheryl: Where are you going?!?! ARE YOU TRYING TO LEAVE?!?
Who, me? 🤷🏻♀️ I’m just minding my own beeswax.
I did try to leave mid session once with Sister Maria.
What he said: BRB
What I heard: Bye! See you Friday.
He came back and I was so mad when he pointed to the floor and was all, Give me another set. 😑
Me: [resting casually on bench] WHAT?!?! I’ve got my BACKPACK on. I DONE DID my HAIR. I was gonna go get a snack or a 💅🏻.
In my defense, my hearing was deteriorating rapidly at the time.
Then I was like, I never did that to Coach R.
Then I was like, BAHAHAHAHA!! No, wait – I DID!!
2015 – I tried to sneak out while he was training in the back and I was supposed to be running in the front. But I jumped ship. And when I emerged from the locker room, R was casually leaning against the reception desk waiting for me like, c’mon, Lemme get a bp cuff for you.
Me: 😑 [plans FOILED]
R: I heard you coughing. 😑😑😑😑 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace #deaf #hoh
I used this pic in Ed’s book! It was the first book I wrote bc I was sad when I was officially let go from my Real Job. To be clear, they kept me on way longer than legally obligated to and I had access to all my benefits, etc. 💗. I was just sad bc losing my job was just another signal that this disability thing was for real. My brother pep talked me: Ning, now you can do WHATEVER YOU WANT!!
This is the YouTube version:
It’s so pretty outside! ❄️ when I was confirmed profoundly deaf in the L ear in Jun 2020 and acknowledged that my R ear had declined I faced the harsh possibility that if my R ear followed the same timetable as my L ear I could be profoundly deaf in both ears by 2022. It’s Jan ‘22 and I still have a ton of useable hearing in my R. 💗😊💗And I’m definitely using it for good things. In 2020 I forgot about my hearing situation and bought a lifetime membership to @dwellbible 🤣🤣🤣. When I realized what I had done I was like, k – I just need x more years of useable hearing to break even 🔥🔥🔥. I also started preparing by learning #cuedspeech and #asl. I’m a novice, but I can be sassy during telehealth spontaneously in sign/cueing. 🤣🤣🤣. And when I started I knew I had to strengthen my eyes and hands. Options: (1) video games (2) knitting. I chose knitting. At first I had to fall asleep with my Pain Light Stim on my hands bc it hurt so much. But I built up hand strength and coordination. But everything had slowed bc of my overall health. 😑. And my original brain injury means both speech production and receptivity are slow and this makes me anxious. I seriously gave nightmares 🙄 😑. But right now my eyes are bothering me. I think my enlarged optic nerve (not an emergency) is driving this. Prayers appreciated. Xxoo #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
We finally got a snow day!
Sandy joined our family 1 year ago. We are celebrating her Adoption Day tomorrow! She was hand knit by fair trade artisans in Peru, and loves bath time and playing Cooking Show with her friends. Ed Blueberry and Shirley Wolf take special care of her bc she is only 2. She is deaf and is acquiring language LIKE A CHAMPION. We use both #cuedspeech and #ASL. She helps me learn, too, bc she loves me to tell her stories, read books, and sing songs. Her favorites are Jesus Loves Me and Feliz Navidad. She is named after two lovely nurses who cared for me when I woke up. Happy New Year! #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace