Discover and read the best of Twitter Threads about #SpoonieChat

Most recents (7)

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 times…

#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. Photo of a freshly blown hand vein from a blood draw. Some bPhoto of a (functional!) forearm IV that looks like it is stClose-up photo of an upper arm with a “band-shaped” bruiPhoto of an arm with a number of deep purple bruises on it f
This kind of reaction & being an “impossible stick” happens almost every time I’m sick enough to go to the ER, but only rarely when I get blood tests at home/in the community. In fact at home I’ve been a relatively easy stick.

Correlates w/autoimmune flares & reticular patterns.
Read 9 tweets
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
Read 5 tweets
#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
Read 6 tweets
Getting my biologic: a thread. Buckle up, it’s 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 enemy… my immune system attacks them, causing inflammation and pain. This sounds bad, and it is, but what’s worse is over time this inflammation can erode your joints.
Read 78 tweets
Finding connections & advocating has been so helpful for me.

Here’s a thread attempt, w/my limited/developing advocacy skills.

Tips/pointers/thoughts from #RareDisease, #chronicillness, #disability, #NEISvoid, #hcldr, #patientchat communities?

Let’s 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.

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 there’s not a specific community for you yet, you could make one like @OnceUponAGene did. 💚

Read 11 tweets
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

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
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
Read 66 tweets
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!
Read 3 tweets

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