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