PTSD Awareness Day | Not Seizure Update

Before I was diagnosed with #ptsd in Jan 2015, I had no idea what was happening to me. All I could do was train. The gym and the clinic became safe places for me and when i started having flashbacks, my MHP made me inform David and Randy and put safety measures in place. One really awful thing about any kind of Trauma is that it isolates you. It wants you to believe that you are ALONE in your fear, doubt, and moments of terror. THANK YOU to my friend “The Marine” who was the first person to come along side me, show me the ropes, and gave me the courage to seek healing. || Last Summer I started having Events I thought were seizures, but long video EEG (the diagnostic gold standard) proved they are NOT seizures. Actually, these events started brewing in 2018, and became full blown in 2021. They never stopped, I just stopped talking about them bc I was ignoring them after learning they were not seizures. 2 recent Events made them impossible to ignore and were the first ones that were clearly PTSD related. I’m not saying there’s a 100% correlation here, I’m saying it is extremely distressing to concede even a partial relationship. This situation is being worked. Thank you to the professionals who look out for me, help me plan for my safety, and accept and help me when these Events come up during treatment. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace #ptsdawareness

Ps. 94.19 🫁💗

Telehealth 12.30pm|

Me: hi, doc. This is an HONEST QUESTION. I’m NOT trying to be funny. Did I tell you I have lung damage? |.

Answer: No. Boooo. And the doc at my 4pm telehealth also said I had not told him this. 😑. So now I’m taking inventory:

People I forgot to tell:

❌ Psychiatrist

❌ Endocrinologist

I told:

✅ Matt Hankey (he was non-committal, but I’m counting this as a Yes, I told him) @hopeforhankey

Not Sure:

❔Neurologist

❔ENT

I know, I know. I SHOULD BE SURE as to whether or not I told my Neuro and ENT, but I’m not bc I’ve been very busy being in denial. The only doc im sure about is my PCP bc she’s the one who told ME. They discovered this on a CT scan in Nov 2020. it’s like one of those speeding ticket pics that you get in the mail and you’re like, of COURSE I wasn’t speeding. But it’s totally YOUR car, YOUR license plate, YOUR profile in the pic and then you have to admit that it was you. Anyway, they said it was “minimal” so I was like it’s no biggie. But when I started feeling discomfort i spent the next 19 months DEMANDING that someone find SOMETHING they could fix. I blame David and Randy for this 😑💯😑. Bc they trained me for years assuming 100% capacity and I did really well, so I was unwilling to accept that there was any reason for me NOT to do well. But I’ve been so uncomfortable lately that I’m finally accepting it. The theory is that this was caused by the vent in 2011. It’s permanent. There is no talk of rehabbing this or reinflating anything. So I’m just doing the best I can with what I have. I still run weekly with @powherchiro Dr. Cheryl, and I think@it’s critical to keep trying #. But most often my “best” is simply lying in bed asking the Comforter to help me. 💗 Psalm 94.19 In the multitude of my anxieties within me, Your comforts delight my soul. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace

I believe them 😑 Optic Nerve Update

This was last Fri at my Neuro ophthalmologist. I was like, sooo…..those pictures are of comparable scale? Like, you didn’t zoom in on one? 🤣🤣🤣🤣😑😑😑😑 nope. Those are my optic nerves. That’s the first time I saw a pic. I believe them now 😑 Boooo. But so far, so good. Goal = get pressure on the L lower and stable. Time will tell. It looks good right now, but you can’t say anything definitive – however, my response to treatment is directionally correct thus far. Next follow up in 6 mo! Glad for a good check up 💗 #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace #opticnerve

Nick is going to Indiana 🏈

Dear Ones, 

Nick Cross was drafted by the Indianapolis Colts!!!

Do you know why I am loyal to Nick?  He’s a Chapel Baby.  And when he was 5 or 6 I heard him recite this verse for Sunday School:

The word of God Is living and powerful.  And I never forgot it.  I was having a really tough time living life at that moment, which prepared me for my life now.  And hearing those words from the mouth of a little kid really ministered to me heart.

So then I marched over to Mrs. Ridgely’s hospital room at Georgetown, cracked open the GIANT red “Sword of the Spirit” she kept with her as an inpatient and said, look what it says!!!   I AM helped.  She was having a rough time, too, and she really appreciated that verse.

So now we can pray for Nick’s new teammates, friends, and brothers and sisters in Christ, who will welcome him to Indianapolis.

This whole process has been way too exciting for me.  I gotta go lie down.  Special thanks to J–>G, who saved me a lot of time and Google anxiety by explaining things so patiently.  It was like early in the pandemic when I started ignoring Gov. Hogan Bc “I’ll just wait for Gh to explain it.”

Congratulations, Chapel!!  We made it through out first NFL Draft!!  I rejoice to be a part of this family, and that Nick had us participate in this process by asking us to pray for him from the beginning.  Continuing to pray for the Cross family bc their eldest is moving away.  💗🙏💗.

Goodnight.  I seriously have to go calm down.  Maybe some warm milk… 

Xxxoooo, ning

Day 2 💗

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

The 🦚

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

The stripe in my hair

Me: [suspicious]. Are you gonna touch my eye?

Doc: yes.

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

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

Minding my own Beeswax 🐝😑

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

MLK 2022 | Ernie’s Pep Talk

📸: Bob

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: