Having a lot of GI testing done lately. I got my gastric emptying study out of the way Thursday. Esophageal manometry & 24-hour esophageal pH test tomorrow. Not particularly looking forward to either, especially since we have to travel to Wake Forest Baptist yet again (1.5+ hours). Apparently we have to drive all the way back early Tuesday morning so they can remove the esophageal pH tube..?!?! I find it ridiculous to travel just for them to yank it out, but alas that’s the rule…
Should I add “pole dance enthusiast” to my Tinder bio? Tubies do it better… 😉
Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.
Just realizing today is my 2 year tubie-versary 🙂 Lately I’ve been finding myself discouraged by setbacks…but looking at these pictures I cannot help but smile seeing how far I’ve come since then! Love that my dad captured the pure joy on my face when I woke up from anesthesia just in time for pet therapy (and before I realized just how tough my recovery would actually be, lol). Here’s to pressing on & continuing to make the most of the life I’ve been given!
As the cliche goes– low quality picture, high quality friend 👌🏼💜 I love every minute I get to spend with this beautiful, strong girl!!
Well, I am supposed to take an Anatomy & Physiology exam in 4 hours & 9 minutes…but that’s not happening. 😦
My health is much more stable than it has been in years past: I really have no right to complain. But things have declined since last semester & I feel so lousy 24/7 with dizziness, vertigo, nausea, migraines, joint pain, abdominal pain & distention, sharp pins & needles in my fingers, chest tightness, ulceration & bleeding in/around my stoma, feeding tube troubles, anaphylaxis, temperature regulation issues, bladder inflammation, UTIs, blood pooling, weakness, etc. etc. etc.
Academically, I am drowning. Studying for this test, I’ve watched videos, made flashcards, drawn pictures, constructed diagrams, read the textbook, took online quizzes– but NOTHING is sticking. My fatigue has been crippling & my brain fog has been worse than ever before. I am SO burnt out from fighting so hard to accomplish tasks most my age don’t even have to think twice about.
And the most frustrating part of all?
Being sick, taking a billion medications & supplements, doctors appointments, procedures– all keep me from giving 100% in school.
And then, on the other hand…
Being in school, going to classes, doing homework, studying, going to necessary meetings– all keep me from giving 100% to taking care of my health.
It is definitely a catch-22!
Anyway, tonight I made some big decisions about this semester & about my academic endeavors as a whole. I have a meeting with my advisor tomorrow, so we shall see. I am hoping to leave that meeting with a plan & some hope for the future…
Getting a new J tube today at Duke Raleigh! This time, they are going to sedate me– hallelujah. I have second-degree burns around my stoma (from bile), granulation tissue and ulceration around/inside of the tract. Plus PTSD from previous changes…yikes. Here’s to hoping the sedation…well…sedates me!
This evening, I finally got to meet my beautiful, sweet, strong spoonie sister Nicole! We’ve ‘followed’ each other & talked online for almost two years now, but we never got to meet in person despite living only a half hour away. She is INCREDIBLE– truly one of the most beautiful souls I’ve ever met. She endures so much each & every day, yet somehow manages to find joy through it all. She is a superhero! She’s been a huge encouragement to me throughout this crazy chronic illness journey. My heart is so full after getting to hug her in person! We literally just hung out on her couch for like three hours, talking, laughing & commiserating about anything & everything. We could just BE- the good, the bad & the ugly- without having to explain ourselves or wear a fake smile. We both needed this so much. I’m beyond excited for our future spoonie adventures! Love this girl SO stinkin much!