Discover and read the best of Twitter Threads about #spooniechat
Most recents (8)
A little thread for folks who are new to the #a11y field in light of the news, as LinkedIn and Twitter is full of people talking about the alleged atrocity of firing all of the @TwitterA11y team. There are several assumptions being made and myths I'd like to bust. š§µ
First, I'd like to say that this absolutely abominable, just not the atrocity people are making it out to be. My favorite boss led the @TwitterA11y team, and it is awful that they were fired without proper notice, and I hope the class action about the WARN Act wins.
Myth 1: Twitter is the only tech company with 3,500+ employees and no #accessibility team.
I've been working in #accessibility for over a decade. This isn't just untrue now, but it's been untrue. Lack of jobs is one reason I've been underemployed for nearly a decade.
I've been working in #accessibility for over a decade. This isn't just untrue now, but it's been untrue. Lack of jobs is one reason I've been underemployed for nearly a decade.
Question for #NEISvoid #SpoonieChat #MedTwitter #TeamClots
Does anyone know what might cause *intermittently* fragile & hard-to-access veins other than differences in medications?
Sometimes I get blood drawn with zero issues, but at other timesā¦
#TW blood, bruising, IVs next:
Does anyone know what might cause *intermittently* fragile & hard-to-access veins other than differences in medications?
Sometimes I get blood drawn with zero issues, but at other timesā¦
#TW blood, bruising, IVs next:
Photos #1 & 4 are from blood draw attempts. Photo #2 is the only successful IV my entire first week in the hospital. Photo #3 is from a blood pressure cuff seemingly rupturing a blood vessel in my arm.
All of these happened at times my INR & PTT were clotting on the quick side.
All of these happened at times my INR & PTT were clotting on the quick side.
This kind of reaction & being an āimpossible stickā happens almost every time Iām sick enough to go to the ER, but only rarely when I get blood tests at home/in the community. In fact at home Iāve been a relatively easy stick.
Correlates w/autoimmune flares & reticular patterns.
Correlates w/autoimmune flares & reticular patterns.
A4: when it comes to info people have id say I want chronic illness/disability education to start young. I had no idea I was a spoonie when I was young so I never asked for help, harming my health greatly. I also got a lot of conflicting info about eds from doctors #SpoonieChat
most of the info I got before I found my most knowledgeable doctors was from others with ehlers danlos & social media. I want docs to have/give up to date+standardized info on eds & similar conditions. I want docs to stop perpetuating harmful ableist stereotypes of disability too
I recently spoke to a med student and at her school seems like the #eds education is really good but 99% of the doctors ive met were unfamiliar with it or misunderstood what it is. doctors have misunderstood many of my health conditions-saying some are fake, psychosomatic, caused
#SpoonieChat do you say you are chronically ill, disabled, or both? why? whats the difference? to me chronic illness is any chronic health condition. it doesnt have to cause discomfort or interfere with your life #NEISvoid #DisabilityTwitter #chronicpain #chronicillness #spoonie
disability is when you have a permanent or temporary condition that negatively impacts how you interact with your environment. it can be acquired or congenital- and dynamic, stable, or progressive in presentation. there are many models of disability: mainly the social and medical
I am disabled due to a chronic illness & also due to the cumulative impacts of 15 different mental and physical conditions. between undiagnosed adhd & asd, and official eds, neuropathy, pinched nerve, costochondritis, asthma, lung damage, rib slipping, crps, migraines, headaches
Getting my biologic: a thread. Buckle up, itās a long one, with the backstory for context. #spoonie #healthcare #autoimmunedisease #RheumTwitter #rheumatology #spooniechat #invisiblepain #chronicillnessawareness #autoimmune
I have a condition called ankylosing spondylitis (AS), which is an autoimmune inflammatory arthritis that mainly affects the spine, but can spread to other joints as well. In other words, my body thinks that my joints are the enemyā¦
...so my immune system attacks them, causing inflammation and pain. This sounds bad, and it is, but whatās worse is over time this inflammation can erode your joints.
Finding connections & advocating has been so helpful for me.
Hereās a thread attempt, w/my limited/developing advocacy skills.
Tips/pointers/thoughts from #RareDisease, #chronicillness, #disability, #NEISvoid, #hcldr, #patientchat communities?
Letās use #RareAdvocacyAdvice
Hereās a thread attempt, w/my limited/developing advocacy skills.
Tips/pointers/thoughts from #RareDisease, #chronicillness, #disability, #NEISvoid, #hcldr, #patientchat communities?
Letās use #RareAdvocacyAdvice
My journey started with making social accounts, then posting a few thoughts, ideas, questions, & pleas for help. I used hashtags such as #RareDisease, #ChronicIllness, #Disability, #NEISvoid, in general, & then some that are more specific to my condition.
#RareAdvocacyAdvice
#RareAdvocacyAdvice
I was very fortunate to find an org that was developed to specifically for my #RareDisease (@MitoAction). They have incredible support, including weekly calls.
If thereās not a specific community for you yet, you could make one like @OnceUponAGene did. š
#RareAdvocacyAdvice
If thereās not a specific community for you yet, you could make one like @OnceUponAGene did. š
#RareAdvocacyAdvice
The Dude is probably going to die very soon.
The #MemoryCare and our hospice service are managing his discomfort.
We told him that he doesn't have to worry about anything, that he can just rest as much as he needs to.
#Disability #SpoonieChat #Alz
<thread>
The #MemoryCare and our hospice service are managing his discomfort.
We told him that he doesn't have to worry about anything, that he can just rest as much as he needs to.
#Disability #SpoonieChat #Alz
<thread>
Waiting for someone to die is a strange thing, like a trip into a parallel universe, outside of time.
Without Penny our house is quiet.
And this moment is extra silent, like when you wake up to a thick blanket of snow in the middle of the night.
#Disability #SpoonieChat #Alz
Without Penny our house is quiet.
And this moment is extra silent, like when you wake up to a thick blanket of snow in the middle of the night.
#Disability #SpoonieChat #Alz
I think it's the quiet that wakes me up on those snowy nights. Or is it the brightness of street lights and the moonlight bouncing up off the snow?
But that spell is always broken by shovels scraping, blowers growling, or car doors slamming.
#Disability #SpoonieChat #Alz
But that spell is always broken by shovels scraping, blowers growling, or car doors slamming.
#Disability #SpoonieChat #Alz
I am looking for help to establish a Facebook group for disabled/chronically ill PhDs. Anyone open? #phdchat #ecrchat #spooniechat @PhDForum
p.s. We will have the support of @thesiswhisperer, but I can't do it alone!
@thesiswhisperer thank you for retweeting!
