#spoonieadventures

Me and my kiddo yesterday late morning. I decided to say screw the pain and exhaustion and anxiety and go see a movie with my sister and my nephew who was in town for the day. The walk from her car to the theater was short but still very brutal. Standing in line for popcorn was a nightmare for my back. I felt like I couldn’t breathe but finally made it in to the theater to sit down. Had to increase my oxygen for a few minutes while my body screamed and panted for air. Watched the movie without much problem. Had to stop and rest on the way back to the car at least 5 times. My body is just done with life. Afternoon was ok other than feeling terrible. Then had at least 2 seizures that I know of last night. This morning I am exhausted but so far I am breathing better than yesterday. Today will require a lot of resting. I am thankful for coffee this morning. The gentle breeze of the fan. Hallmark Christmas movies on all day. Snuggles from my puppies. #dyingisntfun #pulmonaryhypertension #spoonies #spoonielife #spoonieadventures #chronicbadass (at West Jordan, Utah) https://www.instagram.com/p/BphPUblgM-W/?utm_source=ig_tumblr_share&igshid=1p7p1yhussw35

I got a cramp in my back to make my arse look like this 👍posing is legit like intense Pilates... With less breaks haha In other news I'm ded today, managed to make it to the sofa and that's as far as I've gotten in like 2 hours haha but it's understandable... yesterday I: did my makeup, I worked on a project with @lizbethbobomb, did fansign pics, a tonne of sexy on snap, and worked on a patreon cosplay for this months second shoot (which involved makeup, hair, and outfit) so I'm SUPER PROUD OF MYSELF, on a normal day I'd only be able to tackle one of those things. I clearly overdid it, but it's do hard not to when you get a tiny ease up in a flare. That sweet taste of being able to brush my teeth without loosing my breathe or blacking out wooooo. I managed all that on top having a really wires crossed day, sensations were all mixed up even if pain wasn't debilitating... So food basically didn't happen. Every time I tried to force myself to eat something it was so fucked up haha. Milk tasted like bleach, sweet stuff was sour and bitter, my mouth in general felt like I'd sucked off a sand dune... And everything but my softest clothes felt like gravel ITS SO FRUSTRATING AND WEIRD AND UNPREDICTABLE. It's like a fun game cause you never know what you're gonna get hahaha (insert box of chocolates quote here) #spoonieadventures #spoonie #fibromyalgia #chronicillness #chronicpain #disabledandcute #disabledmodel https://www.instagram.com/p/BoksAk2B2N4/?utm_source=ig_tumblr_share&igshid=1rrlirq8moz5b

Super excited to meet up with @capitalcitydolls tomorrow! I get to see an old friend and co-worker and meet new friends. My birthday dress was the finally nudge toward delving into vintage fashion. #soexcited #ironingmydress #gonnagetdolledup #photostocome #spoonieadventures #livingandloving #communityinvolvement https://www.instagram.com/p/BnwqbWSHAiY/?utm_source=ig_tumblr_share&igshid=o518ejziz3x7

Park date with my #hubblebubble Part 1 of our 4th anniversary date! Rock hounding in Bateman Island. 💜 #rockhounding #anniversarydate #spoonieadventures #lhasacompanion #agatehunting #exploring #lovethisman #hehelpsmehaveadventures https://www.instagram.com/p/BnMchd4HYtx/?utm_source=ig_tumblr_share&igshid=14znafg7iny43

My shirt arrived! #spoonie #nospoons #fibromyalgia #trigeminalneuralgia #gastroparesis #dysautonomia #chronicmigraine #smallfiberneuropathy #meralgiaparesthetica #bilateraltrigeminalneuralgia #spoonieadventures

Caramelized onion apple tart!