Sometimes it’s SO HARD to hope. When circumstances drag you down, when you’ve walked a hard path for a long time, when pain steals your comfort…all these are hope crushers. Most of my tests are normal, and what is not normal is not being escalated. While it’s good that I don’t have XYZ disease, I’m still left with a ton of symptoms, no diagnosis, and no plan for treatment. My hands are beat up (I had procedures Fri and Mon requiring IV’s in either hand. My veins are extremely difficult, so they usually call the Vein Whisperer and often still use the hands.). My heart is beat up, too, bc these things are scary for me, and it’s discouraging to be faced with more of the same. BUT AGAINST ALL ODDS, *hope is rising.*. There is zero explanation for this, except that I’ve been in SO MUCH pain, I’ve had more time to listen to the word of God and sound teaching. THAT is how God does things. He grows hope out of utter darkness, and when I hide His word in my heart, stuff happens. Hope starts growing in my bleak landscape. I’m taking a rest from all these medical adventures. The highlight was Monday, a trip to Hopkins where my friends were AMAZING, I got strapped to a table and wept a bit, and my RN was a complete rockstar. Please pray for wisdom as I rest a bit and consider whether I agree with everything so far, and if I need to pursue anything differently in the future. And if you are sitting in the darkness tonight, feeling cold, alone, and helpless, I’m praying for *you.*. Xoxo #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
Still waiting for test results. I was mistaken: last week I had 7 medical engagements in 4 days. This week I have 5. Normally, I have 3. But this week we also received a special visit from L, the faithful sister in Christ who stayed with me in Oregon when my brain bled. She somehow busted up into the ICU although they wouldn’t let anyone back to see me, including my Oregonian mother with whom I had a verbal agreement that she’d come to me in the hospital if anything ever happened. After the ER called Mommy Daddy, they realized I had never given them emergency contact info. So as they waited on their flight to PDX they called E, L’s husband, who called L in Portland. E still lived in the DC area, so he showed up at Mommy Daddy’s house with a sleeping bag like, what can I do for you? Meanwhile, L took wonderful care of me. My eyes were closed (right after surgery) but when I heard her voice, I cried. She brought Mommy these roses. And I’m so grateful for friends who wait with me. We will be loyal to E & L forever. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
We are done spreading SUNSHINE ☀️ for the week! We saw 5 practitioners this week and have Friday off. “Spreading Sunshine” is ironic, BTW. My Medical Engagement face is like: 😑. Some would argue that it’s like that ALL the time, when it’s not like, 🙄. *Prayer Request*: this is a busy season. I’ve got more imaging and test results pending for my liver, and more Dysautonomia work to do at Hopkins through December. Regarding the liver, it’s actually more than just the liver – there are impacts on the table spanning my whole body – and I would REALLY like a CLEAR ANSWER from this test, either way. 🙏Please pray for ACCEPTANCE of the results, whichever way they fall. 🙏 I am also in the #Dysautonomia Zone and am taking it seriously for the first time. I guess I shoulda paid more attn to it like my Neuro said. Well, I’m paying attention, NOW. bye! #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
I taught N 💗 to foam roll this morning. I was like, blah blah blah, and then Now you gotta imagine Trainer David yelling at you (She’s met him before.). Eg, Stop making that face. NO ONE wants to see your pain face.
🤣🤣🤣🤣😑😑😑😑 I have taught my brother, sister, MomB, and @jjburundi to foam roll. Thank you, Sister Maria!! This pic was in 2015 when he left me alone for 5 min “to foam roll” @letstrainrockville @murgueytiodavid #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
🙏Praying for those who are suffering through loss, danger, and grappling with what it means to rebuild. 🙏Ps. It’s Oct 2 and the lilacs are blooming. I just took this pic tonight.
My Sleep and Swallow Studies were normal. This means I’m still on the hunt for answers. Discussions re. next steps start Oct 20. Thank you so much for your kindness and prayers. I know something is wrong (more wrong than usual) and have been pursuing this since April ‘21. My extremely dramatic medical baseline muddies the waters here. But although I often pretend not to, I know my body and although I’ve accepted a VERY high (and growing) degree of abnormality, I’m not ready to call it yet. However, I’m very tired. **Please pray for wisdom regarding next steps and comfort.** PRAISE: my Sleep Study was a rousing success from the PTSD perspective. I was extremely hyper vigilant throughout, but I was extremely well prepared by my MHPs to handle it. Also, the cognitive challenge of packing my things/food and planning the every necessary to do so, went well. #avmsurvivor #strokesurvivor #lifeismysport #learninghowtolive #shreddedgrace
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