I think I definitely failed my quiz today in bio, whoops. I also saw a cute boy at A&W. I should make business cards that say “hi, I’m Dylan, I think you’re cute but I’m too anxious to actually tell you that, here’s my Instagram if you want to talk ;)”. Just give them to random cute people I see
Image description: First slide: How to make queer spaces more accessible to autistic people. Allies to all spaces where you want to be inclusive to NDs, particularly autistics and people with SPD. By Chrysanthe Tan. 2nd slide: be aware of sensory environments when planning events or choosing locations. Volume levels, scents, lighting, temperature. 3rd slide: provide as many details as possible. Not knowing a schedule or complete list of activities and resources can prevent autistic people from feeling safe enough to attend an event. Provide details on parking and public transit, the cost of the event, types of food available and the appropriate dress code. Mention whether your space will be sensory-friendly, and if there will be gender-neutral and wheelchair-accessible restrooms, as well as available and accessible seating. If providing a lot of detail doesn’t work for the invitation, include a link to read more details on a separate page. 4th slide: provide language and communication aids. When screening a video, turn on closed captions with no questions asked. Many autistic people have trouble processing auditory language. Consider providing name tags – some autistic people struggle with reading and recognizing faces. 5th slide: check in with us to see how we’re doing. It’s best to ask specific questions to draw us more easily into the conversation. Instead of ‘how are you?’ or ‘are you okay?’ try, ‘is the volume too loud?’ or ‘is it too cold in here?’
#chronicpain #pain #fibro #fms #fibromyalgia #eds #ehlersdanlossyndrome #ehlersdanlos #chronicfatigue #chronicfatiguesyndrome #cfs #spoonie #spooniememe #cpunk #cripplepunk #arthritis #endometriosis #endometriosisawareness #caneuser #cane #wheelchair #wheelchairuser #mobilityaid #mobilityaids #disability #disabled #invisibledisability #invisibleillness
Made a new friend 🦓 ⬇️⬇️⬇️⬇️⬇️⬇️⬇️⬇️
Why the Zebra??
"People with the Ehlers-Danlos syndromes and hypermobile spectrum disorders (HSD) often identify themselves as zebras.
Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.
But many of us spend years pursuing a diagnosis for disorders that aren’t well known. Or aren’t expected in someone who looks normal, or is too young to have so many problems, or too old. Or even, what we might have is considered too rare for anybody to be diagnosed with it.
So the zebra became our symbol to mean, “Sometimes when you hear hoofbeats, it really is a zebra.” Ehlers-Danlos syndromes are unexpected because they’re rare. Hypermobile spectrum disorders are common, but are unexpected because they remain misdiagnosed or under-diagnosed.
When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome or HSD are identical. We have different symptoms, different types, different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome or HSD.
A group of zebras is called a dazzle.
We are a community of individual zebras, we are stronger together, and we dazzle."
#hEDS #EDS #EhlersDanlos
#hypermobileEDS #EhlersDanlosSyndrome #hypermobile
Happy weekend! 🤗 since this whole “I’m going to share my story & help make the invisible ➡️ visible” thing I’ve started, I don’t always know what to share. What would help other zebras? What would help loved ones of zebras? What would help the poor person who stumbled across this accidentally to understand? As I put on my lounge clothes after taking my daughter & her friend to the movies (I want a dragon), I couldn’t help but laugh at the memory I had when pulling out this shirt my mom got for me. I don’t normally wear message tees, except at home... but one morning, I tried to get dressed to take my kiddo to school & a stabbing pain in my shoulder almost made me vomit & completely immobilized me. I went to the doc in my “silent scream for coffee” tee, embarrassed that my shoulder was locked up & I was basically out in public in pjs. At least the nurses got a laugh. The last surgery on that shoulder was 13 years prior. For about 6 years, I struggled through with cortisone shots. Surgery 21 happened about a month later. That tee was “the moment.” One of my hip surgeries, the cause listed on the paperwork was “stepping out of a rabbit cage.” 🤣🙈👀 of course, all these issues are present daily, but there’s usually a “that’s it! I’m DONE!” moment. The pics of the knee, surprisingly did NOT end in my 11th knee surgery. In the middle of the night, I tripped on my dark, 25lb cat & splatted on the ground (I highly recommend motion night lights at ground level!). Thought I’d shattered my kneecap. But, 6 weeks of continued bruising & discoloration, & it healed. For about a year, I’ve been waffling back & forth about what’s next. Right hip? Right wrist? Which can hold out longer? Will there be a “stupid moment” that decides for me? How do other zebras prioritize what gets fixed when you’re dealing with a “lemon” and EVERYTHING needs to be fixed? 🤔 #ehlersdanlos #ehlersdanlossyndrome #eds #chronicpain #chronicillness #chronicpainwarriors #zebrastrong #fightlikeazebra #edsawareness #invisibleillnessawareness #invisibleillnesses #ayawnisasilentscreamforcoffee #bendynotbreakable #livingwithchronicillness #livingwithchronicpain #fighteveryday #selfcare #beyourbestyou
eyebrow tattoo tint
I saw this saying and it really hit home for me today. Ian went home after lunch yesterday because sometimes the pain is just too much for him. But yesterday he wanted to go to Wrestling practice and be with friends and smile and laugh like nothing bothered him. This morning was hard one so Vinny spent some great time just having some son and father bonding.
Ian suffers from pain and aches daily and knows that each crazy thing he does might cause pain later but it won't ever stop him. This kid walks in to every room and smiles so big that people are just drawn to him. He is a kindergartener with more girls friends than he can keep straight! The stuff he smiles through and takes on like it is nothing is amazing he is such a super hero.
#edslife #eds #edsmom #edspain #edsboy #edssucks #bodyhurt #ian #boymomlife #boymom #momblogger #momlife #momboylife #momboy #strangth #pain #strong #kids #superhero #smile #powerful
Some training and errands with Boomer today!
After working through some fears he handled it really well.
I'm slowly upping his task and PA work to see where and what he's at.
I've also found out that he loves a clicker! So we just started working with that, too. (2/22/2019)
To everyone who didn’t get everything they needed this week, there is always another chance 🌌💙
I got home from a crappy day at work and Squirrel is waiting for me because she flipped over all their houses 🤦♀️🙄
does anyone else ever think of the times they weren’t ill (or at least their illness hadn’t caught up to them yet)? i miss the days of waking up and being fully rested. 😴
It's been a very confusing rollercoaster lately. •
Cardio referred me to someone about lyme, but when I called to talk to them about everything I've been dealing with the last few years the doctor outright told me its highly likely that its systemic lupus rather than lyme.
I laughed it off and agreed to make an appointment anyways but then I stopped to research lupus and I'm in awe that we've never touched the topic of it even with my horrible immune system and million and one other problems. I hit every single mark for it from the rash and fatigue to the ulcers and chest pain. •
I'm hopeful that maybe, just maybe, this might be the cause to everything else we've been dealing with over the years. I know there's no cure, no real treatment, but after years of struggling and being told it's all in my head, I looking forward to knowing what's really going on 🙏
So far today has been a much needed self care day! I dyed my hair (I know it’s bad for my hair, but it needed to be touched up) and Elex shaved the sides of my head for me. I’m feeling good (and anxious for MRI results which will probably take a few days 😭)
Some training with Boomer at Staples (pictured), Fred Meyer, and Petco from the other day working on our PA manners and tasking.
Short trips, probably an hour total, but he did it with a happy and relaxed tail and did great and recovered super well when he was startled by a couple of loud bangs and people dropping stuff and crashing their cart right next to us, he jumped up and out of the way because it startled him then immediately recovered and waited for me to direct him back where I wanted him-- 100% acceptable with me. Especially since I've been slacking with training, he totally rocked it with his tasking and PA in general.
However, the 6 adults in line in front of us oogling over the "puppy" to the point that the pharmacy techs had to half yell at the customers to get their attention away from Boomer..who was just sitting at my feet and was focused on my face.
I am finding our big lettered @patienceandlove143
"SERVICE DOG IN TRAINING" cape vest is keeping people from distracting or otherwise interfering with our training, for the most part and it's very clear and eligible and we absolutely love it! (2/6/2019)
My health hasn't been doing well, I've had a massive increase in seizures we are trying to figure out.
I apologize for not being very active on IG. I don't have much energy and I'm so exhausted.
Thankful for my pups ❤️