Discover and read the best of Twitter Threads about #spooniechat

Most recents (23)

Here's my latest update to my collection of active Twitter #Disability & #ChronicIllness Hashtags - previous update 12.13.18.

Please share it. Thank you! :-) Light blue sand background has the # drawn in the sand to the right. The left side is blank. <br />
<br />
At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.

Link: ko-fi.com/TinuWrites
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also helpful for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 45 tweets
Here's my lastest update Twitter #Disability & #ChronicIllness Hashtags - previous update 10.17.18

Please share it.
I'll have a PDF version of this for download on my Ko-fi by this time tomorrow. Link at the end.
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 29 tweets
A6. Twitter, despite some people's belief that #ChronicPain can be cured by ridiculous things, is a wonderful place to find and participate in community. #LupusChat
A6. Some favorite hashtags and Twitter chats, then I'll leave a link to the last time I updated my list.

Chats

#SpoonieChat
#MedTraumaChat
#LupusChat of course
#CripLit
#CripTheVote
Read 3 tweets
A7. Whew. "It's not useful to compare myself to a mirage."

Omg! A mirage.

This is a revelation. Of course I know this on one level. I do know that my impressions of reality are not reality. But.

#SpoonieChat
A7. This is like realizing, for the first time, that your ego is generating your thoughts. That you're the person HAVING thoughts, that they are not you.

#SpoonieChat
A7. I feel empowered by this idea. This reality.

It's empowering.

#SpoonieChat
Read 3 tweets
A4. Yes because I trust your word @DawnMGibson.

I am newly diagnosed with Arthritis in my right hip. I've been complaining about my hip and walking with a cane for years. #SpoonieChat
A4. And I learned so much for #ACR18 and @CreakyJoints and @DawnMGibson's #Painsomnia interview.

#SpoonieChat
A4. It gave me lots of opportunities to learn about #fibro (which is often treated by Rhematologists.)

And I'd never heard of patient posters. There was so much sharing. I was so imoressed with the patient involvement at #ACR18.
#SpoonieChat
Read 3 tweets
I once had a primary care doc laugh in my face,

Tell me my abscess was just a pimple,

And then tell me to take my biologic medication...

Like, I could’ve conceivably died had I followed that advice over my gut. #DoctorsAreDickheads
That same doctor told me I couldn’t possibly be in 8/10 pain nearly every single day with no pain control but ibuprofen.

After having arthritis since I was in kindergarten.

And put a snooty note on my chart about me being a difficult patient. #DoctorsAreDickheads
Having to constantly be my own provider because licensed ones either don’t know about my rare conditions or think I’m full of shit is why I’m a patient activist.

It’s also why I have an MS in Healthcare Administration and worked for a major univ for a bit. #DoctorsAreDickheads
Read 16 tweets
😆🤣😂I died when @DawnMGibson said that some sleep hygiene tips are muggle advice! #ACR18 #Painsomnia
"Magical beings such as myself don't always do well with that." #ACR18 #SpoonieChat #Facts
I much prefer the idea of a sleep PLAN. You don't hear people talking about our #painsomnia struggle outside of giving the standard advice that doesn't work for is. #ACR18
Read 14 tweets
Updating Twitter disability hashtag thread.

@AllisonR has educated me that I should use Sentence Case for #Accessibility. Graphic reads: # symbol followed by the word Hashtag in white lettering on a blue background.
I have #brainfog so I know I missed someone. Please add your favorite resources as a reply.
Do you want to share your disability experience with others? Try these hashtags.

Amplifying stories

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 16 tweets
A5. Yes. I think it's because either I have been disbelieved so much about the intensity & pain level.

Or just that there's nothing a person not in chronic pain would understand.
#SpoonieChat
A5. Example. I was shown an x-ray of my hands when they were investigating my rhematoid factor. They asked me what happened to my right ring finger. The bones in the top are completely smashed. #SpoonieChat
A5. They asked me to explain. I told them the truth - this happened in 2006. I don't report pain that isn't worse than the pain in my back or nerve pain in the body. I honestly thought it was a sprain. #SpoonieChat
Read 3 tweets
A4. An organization that has us as meaningful participants in programs.

I'd also like to see more public information and Isaac to inform the public of the necessity of accessibility. #SpoonieChat
A4. And a PSA about the fact that wheelchair users and people who use other mobility ads can sometimes walk w/o them and NOT be frauds would be nice.

#SpoonieChat
*PSA - why won't autocorrect let me be great? 🤣 #spooniechat
Read 3 tweets
A10. I never know what to share here. Always forget the question is coming. 🤣

Only news right now is that I'll be starting my Early Voting resource soon. It's harder to be disenfranchised if you vote early or by absentee/mail-inz. #spooniechat
It's most helpful in states where they tell you when your vote has been counting. Also try @resistbot @make5calls @hellovote & #PostcardstoVoters
Read 3 tweets
A6. A tool that could help me organize many people to come different parts of the jobs to mobilize people. An abled advocate to fill in my gaps. #spooniechat
A6. I've considered building a tool that would let us borrow it barter each others spoons. #SpoonieChat
I've been an activist since forge. Raising awareness, spreading news, telling human interest stories, making calls, protesting, boycotting, buycotting etc - it's all activism.

Now we have more tools. But there are those with a vested interest in us not using our voices.
Read 4 tweets
A5. I was super-annoyimg about whether to disclose once I reached acceptance of my situation.

So I wrote about it on my small business blog. And people embraced me so warmly. #spooniechat
A5. I learned that a LOT of people are disabled entrepreneurs and hiding it. #Ableism is that strong. The culture is that focused on working yourself into an early grave.

I feel compelled and happy to help if I can.

#SpoonieChat
A5. #SpoonieChat helped me so much.
Read 3 tweets
I met friends here too. @Aoiferocksitout, my rock and one of the sweetest, nicest people I ever met.
@alexhaagaard one of my mentors
@painandcats_ who has this great way of putting frustrations I can't even name into words.
@DawnMGibson, who teaches me so much
#spooniechat
#spooniechat
I also find out other friends are #spoonies or otherwise #disabled through activities online and here.
If I wasn't part of the online community I wouldn't know about
@DisVisibility & her amazing work
@mikes_recovery & changing media perceptions
@Imani_Barbarin who shows me how to be bold when I think I'm inadequate...

I'm getting tired but there's almost 100 others. #spooniechat
Read 3 tweets
#SpoonieChat has also given me more ways to contribute to the world.

Even when I'm housebound I can be supportive of other isolated Spoonies.
I can call people once I get to know them through DMs. I can give advice outside of Spoonie tips. #spooniechat
Being able to contribute offsets the internalized ableist thought that you don't matter in the world.

That you're productive.

That you'll leave behind a better world. #spooniechat
Read 3 tweets
With the exception of my closest friend, I didn't know other people had conflicting #chronicillness or more than one. Not until I went online.

#spooniechat
Then I found people who understood that some suggested solutions aggravate other conditions.

It's a comforting, peaceful break not to have to explain that what solves one illness aggravated another.
It's great emotional support to be able to talk about the health issue of the day, to vent and not be accused of wanting something other than understanding & commiseration.

#spooniechat
Read 4 tweets
Having the #spooniechat community on Twitter helps me find resources and tips for my chronic illness in a way I don't get from doctors.
Doctors and non-spoonie friends suggest things, meaning well, that aren't practical, attainable or helpful.

But other people who have my symptoms or disease have field-tested answers.
#spooniechat
It may be hard to understand if you've never been house-bound or bed-bound from #chronicpain or #fatigue.

You don't have the error ofmsrgin for experimentation.
Read 3 tweets
A7. It changes with the crowd and the space. There are things I'll talk about on Twitter or Facebook that I won't on my blog or can't in person.

My filter is usually whether it might help someone who is in our community or should be. #SpoonieChat
A7. The exception is #cancer. There's too much silence around cancer and a third of us will get it. So the rest of us will know people with it.

#SpoonieChat
A7. The treatment decisions are off-limits though. So many people think they know the #cancer cure, but their "cures" are hurting folks. #SpoonieChat
Read 3 tweets
A6. There are so many misunderstandings? I don't even know where to begin.

@painandcats_ had a good one earlier this week that happened to me. It was people being happy I'm not on my cane some days. #SpoonieChat
A6. Not always. When people express it as joy that you feel better it's great.

I went down the stairs earlier this week & 1 of the junior twins shouted "Auntie Tinu is feeling much more better!" #SpoonieChat
A6. Then they cheered "Auntie Tinu! AUNTIE TINU!" And I almost cried in the sheer happy of it.

Their emphasis was on my wellness.

#SpoonieChat
Read 5 tweets
A5. Anticipation of how inconsiderate non-disabled people can be.

At first it was Shane. But then I thought - why am I ashamed that I'm sick? #SpoonieChat
A5. The answer was that I was ashamed because of how I observed how other people treat disabled or chronically ill people. #SpoonieChat
A5. I didn't want them to treat ME that way.

Then this all came into my consciousness and I realized- I'm not the one who should feel bad.

Being a #spoonie is not a crime. #SpoonieChat
Read 3 tweets
a9. ACCESSIBILITY.

Sorry I had to shout but I sure didn't hear when I was one of the abled folk. I did what I THOUGHT would help, but in reality, I had to stop going to my favorite events, to protest, to marches because they are NOT ACCESSIBLE to me. #SpoonieChat
a9. Example of when an event is somewhat accessible but the instructions are not so much. I pointed this out and got dragged for it of course. #spooniechat
a9. So being the busy-body that I am, I tried to create an organization to make any event we'd want to attend accessible via digital connection. #spooniechat
Read 9 tweets
A8. Tv or films. Catching up on my shows.

Video games. Mobile or OC - I can't have a game console when I'm not rich. Literally nothing gets done.

#SpoonieChat
A8. Good conversation. On the phone though.

I kind of hate video chat because it takes too much prep.

By the time I'm ready & comfortable I'm too exhausted. #spooniechat
Seriously if I agree to a video chat I really like you. If I suggested it then I love you. Deeply. #SpoonieChat
Read 4 tweets
A5. Well she's already giving me Black Panther. So... #spooniechat
A5. I think I need to see if 4 times & get back to you. #SpoonieChat
A5. All this Black excellence in a Black blockbuster during Black history month. Unlessyspoonie Godmother has another Obama term in there or a new election? Dunno.
Read 6 tweets

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