#SpoonieChat Transcript

Healthcare social media transcript of the #SpoonieChat hashtag.
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Sharon Leukert @FragrantGrace
@DawnMGibson @CreakyJoints A10 I got a high risk COVID19 and IBD paper from my gastro, but I did not know of the patient support program. Yet another beautiful thing our fairy godmother does for us! We love you! #SpoonieChat
Teresa M. Stallone @tstallone
RT @FragrantGrace: @DawnMGibson A9 Need better "pandemic purchasing" practices. The very moment of a "potential scare" there should be aler…
Tina @Nice_White_Lady
A3 In some ways it just feels like any break from school. The staying home part is easy. Worrying about every cough when it’s prime allergy season is the scary part. #SpoonieChat
Tinu @Tinu
RT @sl3limitless: A7: It’s not just the elderly that are at risk. Chronic illness occurs at any age, and and those with #chronicillness are…
Tinu @Tinu
RT @DawnMGibson: Q8: #SpoonieChat: - Do you feel that your State/Province & society take the pandemic seriously enough? #HighRiskCOVID19  @…
Shannon Ragland Lake #HighRiskCovid19 @SocialMediaShan
A9 (cont): This begs the question...why is a #COVID19 patient more valued than a #rheum or #lupus patient? Which takes me to the dark place of why should disabled people be sacrificed if care is rationed due to triage + mass casualties? #HighRiskCOVID19 #SpoonieChat
Teresa M. Stallone @tstallone
A10: I have. Grateful @CreakyJoints created the patient support program. #SpoonieChat #HighRiskCovid19
Patricia Frame @2Patra
RT @Tinu: A3. I sense confusion. People are saying “nothing is happening so we don’t have to social distance.” No, nothing is happening B…
Teresa M. Stallone @tstallone
@__paigelauren__ I agree. I did not know a dentist could even prescribe Plaquenil! #HighRiskCovid19 #SpoonieChat
Pam @pamdwriter
RT @helenrottier: A4: I wish people would learn from the disability community and eliminate the toxic productivity culture from school and…
Tina @Nice_White_Lady
A4 I still need my Spoonie Godmother to clean my bedroom, where all piles eventually end up. I need all my medication in three month quantities and DELIVERED. I need affordable meds that don’t require super secret coupon codes. #SpoonieChat
Joanna Spaghetti @joannaspaghetti
#HighRiskCovid19
Shannon Ragland Lake #HighRiskCovid19 @SocialMediaShan
A10: Yes, as a #HighRiskCOVID19 person. All resources I can access right now at this scary time are valuable. #SpoonieChat
amber 🌼 @MANICWEATHER
RT @helenrottier: A4: I wish people would learn from the disability community and eliminate the toxic productivity culture from school and…
Michelle @wordsbymj
@DawnMGibson @CreakyJoints A10. Just did, thanks! #SpoonieChat #HighRiskCovid19
Dawn M Gibson @DawnMGibson
#SpoonieChat, thanks for another great chat. I'm eagerly reading your tweets. Please be careful, #HighRiskCOVID19 fam. 💕💕💕
Paige Lauren ♿ (they/them) @__paigelauren__
@Owl_ofthewoods Absolutely! At the very least their licenses should be suspended. People are going to get very sick without their Plaquenil and these doctors are causing a shortage. #HighRiskCovid19 #SpoonieChat
M @PlanetLoBattery
RT @DisVisibility: "If you’re acting as if high-risk people are expendable, then you’re being ableist. When you assume that people are able…
💖💄 Aoife ♿💜 @Aoiferocksitout
@DawnMGibson A2 Very anxious right now, trying to cope with this new constant level of high anxiety. I really want to help others who are feeling overwhelmed with anxiety right now, checking in on my loved ones a lot, letting it be known that #Disabled people aren't disposable. #SpoonieChat
K Lucas McKay @KLucasMcKay
RT @JediMaster941: A7: We the chronically ill and immunodeficient are trying really hard to live our lives safely. We can NOT afford to get…
LauraR @OakAndRedwood9
A3: #SpoonieChat My experience felt much screaming into a maelstrom. I tried to explain why and how I needed to be protecting myself and my medically fragile family members and students and got gaslit over and over. And then suddenly, people paid attention when others said it.
Teresa M. Stallone @tstallone
Thank you, Dawn! Take care everyone! #Spooniechat #HighRiskCovid19
Tina @Nice_White_Lady
A5: Something like The Walking Dead where you think the enemy is one thing, but there’s something else sinister hiding in plain sight. #SpoonieChat
Cristinė ✉️ @Owl_ofthewoods
@DawnMGibson @CreakyJoints Just enrolled! Thank you, Dawn. #spooniechat
Al @saralicia
A1. #SpoonieChat I'm Al. I have a bunch of food allergies Dxed as well as IBS. I've got all kinds of unDxed stuff going on, too. I have my suspicions (MS, EDS, MCAS?) but idk. Nothing is completely certain.
Paige Lauren ♿ (they/them) @__paigelauren__
@tstallone Same! I thought dentists were able to prescribe antibiotics, pain meds, and only a few other medications. #HighRiskCovid19 #SpoonieChat
Shannon Ragland Lake #HighRiskCovid19 @SocialMediaShan
As a followup to #SpoonieChat, I wanted to post a few articles of interest pertaining to the issue of rationing care and the effects of medicine hoarding + shortage. #HighRiskCOVID19
Jed Finley @JediMaster941
@DawnMGibson Did you get eaten Sis? Hope not.. Great chat tonight! #SpoonieChat Hey everyone, keep sharing your #HighRiskCovid19 stories! Go follow @HighRiskCovid19 keep the movement going, stay up to date, and let the world know we need them to #StayTheFHome!
Alicia White♿ @AliciaWhite_59
This is why I am begging you to stay home
Dawn M Gibson @DawnMGibson
RT @JediMaster941: @DawnMGibson Did you get eaten Sis? Hope not.. Great chat tonight! #SpoonieChat Hey everyone, keep sharing your #Hig
Dawn M Gibson @DawnMGibson
RT @Nice_White_Lady: A5: Something like The Walking Dead where you think the enemy is one thing, but there’s something else sinister hiding…
Jed Finley @JediMaster941
RT @DawnMGibson: #SpoonieChat, thanks for another great chat. I'm eagerly reading your tweets. Please be careful, #HighRiskCOVID19 fam. 💕…
Dawn M Gibson @DawnMGibson
RT @tstallone: Thank you, Dawn! Take care everyone! #Spooniechat #HighRiskCovid19
Michelle @wordsbymj
RT @SocialMediaShan: A9 (cont): This begs the question...why is a #COVID19 patient more valued than a #rheum or #lupus patient? Which takes…
Dawn M Gibson @DawnMGibson
RT @tstallone: A10: I have. Grateful @CreakyJoints created the patient support program. #SpoonieChat #HighRiskCovid19
Dawn M Gibson @DawnMGibson
RT @Nice_White_Lady: A3 In some ways it just feels like any break from school. The staying home part is easy. Worrying about every cough wh…
Cristinė ✉️ @Owl_ofthewoods
@DawnMGibson Thank you, Dawn. I hope you and yours stay safe and sound. Thank you again for your support in this time of chaos and high anxiety. We need each other more than ever!!!! #spooniechat #HighRiskCovid19
Tinu @Tinu
RT @OakAndRedwood9: @DawnMGibson A8: #SpoonieChat My state seems to be (CA), but it didn't feel fast enough. My county took far too long to…
Tinu @Tinu
RT @UnxpctdAdvocate: @DawnMGibson A8 - my city definitely is. @Ron_Nirenberg is doing a great job. But @GovAbbott is NOT. The whole state s…
Tinu @Tinu
RT @DawnMGibson: A8: I'm happy that the State of Michigan is taking it seriously, but individuals could do better. #HighRiskCOVID19
Tinu @Tinu
RT @BeingCharisBlog: @DawnMGibson A8: #SpoonieChat #Sacramento officials were *encouraging* known exposures to go about their daily lives…
Tinu @Tinu
RT @itsmorenamorena: A8: Georgia isn't doing enough. The City of Atlanta and some surrounding counties seem to be with #StayAtHome restrict…
Tinu @Tinu
RT @keilet: A8: #SpoonieChat - I would rate CA as *poor to fair* with it's response. There's definitely a lot of room to improve. We need t…
Tina @Nice_White_Lady
A7. I want non-disabled, non-sick people to realize that if they catch coronavirus it could cause enough damage to their body that they become high-risk. #SpoonieChat #HighRiskCovid19
Tinu @Tinu
RT @JediMaster941: A8: More and more every day. Yesterday though. Our county commissioner basically said "Stay home, unless you don't want…
LauraR @OakAndRedwood9
@DawnMGibson A2: #SpoonieChat Focused on work as much as I can to keep occupied. I have more than 100 teenagers counting on me for distance learning, and it helps. But having a lot of moments when I burst into tears, have to use techniques to stop anxiety. Glad my therapist uses telehealth.
Al @saralicia
Q2. #SpoonieChat I don't know. Brain fog. I'd worked myself too hard and was overdue a vacation, and even a week into isolation and doing very little, I'm still SO tired. I'm stressed but my med is making the anxiety manageable. Asthma isn't well controlled.
Jed Finley @JediMaster941
RT @tstallone: A10: I have. Grateful @CreakyJoints created the patient support program. #SpoonieChat #HighRiskCovid19
Dawn M Gibson @DawnMGibson
#SpoonieChat #HighRiskCovid19
Shannon Ragland Lake #HighRiskCovid19 @SocialMediaShan
#Lupus Patient Thanked for ‘Sacrifice’ After #COVID19 Drug Denial | The Mighty #SpoonieChat #HighRiskCovid19 #RationingOfCare #DrugShortage #rheum #spoonie https://t.co/ddISLDe3lk
TJ Moon @TjTupechka
RT @DisVisibility: "If you’re acting as if high-risk people are expendable, then you’re being ableist. When you assume that people are able…
Michelle @wordsbymj
@Nice_White_Lady I hear you about the cleaning. I need help too. Just 2 hours of assistance would make such a difference. #SpoonieChat
Rachel Miyazaki @pekopekopompom
A7: Few months ago, I got sick w/ not 1 but 2 viruses at the same time. Partner didn't have the slightest throat tingle, rarely has sick days, has weeks worth of accrued paid leave. I'm constantly running out of paid leave or taking unpaid leave. (1/5) #HighRiskCOVID19
Shanahnahnah @shanahnahnah
RT @keilet: A4: #SpoonieChat - This is a huge question. More than a single tweet or even a string of tweets can encompass. This health cris…
Al @saralicia
A3. #SpoonieChat I'm scared and angry. People don't seem to be taking this as seriously as they should. The bungling of the government is killing people. Respiratory distress is something that terrifies me although it's part of my life. The COVID-19 kind looks awful.
Shanahnahnah @shanahnahnah
RT @DawnMGibson: Q10: #SpoonieChat: - Have you enrolled in the #HighRiskCOVID19 patient support program? https://t.co/NjBxajRKnP w/ @Creaky
Joanna Spaghetti @joannaspaghetti
@DawnMGibson @CreakyJoints A10 #SpoonieChat #HighRiskCovid19 I am now lol! I've had the link open in my phone browser for like a week, but wanted to do it on my computer. Thanks for the reminder! ☺️
Dawn M Gibson @DawnMGibson
RT @JediMaster941: A10: Are you kidding me?! Of course! All the cool kids are over there! Such a useful resource from a organization who ki…
Shannon Ragland Lake #HighRiskCovid19 @SocialMediaShan
#COVID19 Treatment Search Leads to Chronic Illness Medication Shortage | The Mighty #SpoonieChat #HighRiskCOVID19 #lupus #rheum #hydroxychloroquine #plaquenil #HIV #Remdesvir #DrugShortage https://t.co/iMKjQ9CVws
Rachel Miyazaki @pekopekopompom
A8: I know it's a tricky situation to balance the impact on the local economy and small businesses but for both Washington and Hawai'i, I feel like it's too little too late. #HighRiskCOVID19
Shanahnahnah @shanahnahnah
RT @DawnMGibson: Hey, #SpoonieChat! Tonight's going to be a little bit different. We're switching hashtags half-way through. Hop over…
Teresa M. Stallone @tstallone
@__paigelauren__ When I’m able to, I’m going to ask my dentist about that. I wonder if DMDs can prescribe more than a DDS. All dental offices were closed in my state. #SpoonieChat #HighRiskCovid19
Erica Capuano @radcrochetqueer
RT @DawnMGibson: Q2: #SpoonieChat: - How’re you doing? @DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when g…
SqueakyWheel ☮❤🌻♿🆘🌊😎 @SqueakyAnna
RT @MichaelKuluva: @DawnMGibson A3 : I am working right now as an essential service so I am seeing this almost from front lines or should I…
Shannon Ragland Lake #HighRiskCovid19 @SocialMediaShan
As A #Disabled Person, I'm Afraid I May Not Be Deemed Worth Saving From The #Coronavirus | HuffPost #SpoonieChat #HighRiskCOVID19 #RationingOfCare #TriageVictim https://t.co/VKU51INB00
Al @saralicia
A4. #SpoonieChat If bosses would just take employees seriously and have them stay home when they're sick, that would be huge. Like, it shouldn't even be a question, but it you're doubted if you get sick and too many bosses require people to show up for work in spite of fever
Al @saralicia
A5. #SpoonieChat Horror/Suspense
Shannon Ragland Lake #HighRiskCovid19 @SocialMediaShan
U.S. Hospitals Prepare Guidelines For Who Gets Care Amid Coronavirus Surge : NPR #SpoonieChat #HighRiskCOVID19 #ethics #RationingOfCare #VictimOfTriage #Disabled #CivilRights https://t.co/L9kWL9pTJz
Jed Finley @JediMaster941
RT @SocialMediaShan: As A #Disabled Person, I'm Afraid I May Not Be Deemed Worth Saving From The #Coronavirus | HuffPost #SpoonieChat #High
Kelly “Nerdzilla” Mendenhall @NerdzillaKelly
I can attest to the power of an anti-inflammatory diet. And I’ll still have a treat occasionally but not every day for sure! If I have too much salt or too much sugar I get pain flares. Hydration is super important too. This article is super useful/informative! #SpoonieChat
Jed Finley @JediMaster941
RT @pekopekopompom: A8: I know it's a tricky situation to balance the impact on the local economy and small businesses but for both Washing…
Jed Finley @JediMaster941
RT @SocialMediaShan: #COVID19 Treatment Search Leads to Chronic Illness Medication Shortage | The Mighty #SpoonieChat #HighRiskCOVID19 #lup
(((Chrisa Hickey))) @Chrisa_Hickey
RT @DawnMGibson: A10: Any patient, loved one, or caregiver can enroll to receive the most current #HighRiskCOVID19 info.
Tina @Nice_White_Lady
A8 I think Gov. Murphy (NJ) is taking this seriously. I’m worried about people who don’t have a relationship with a primary care doctor. I’m suspicious of places like Target & Walmart that sell enough groceries that they can stay open. #SpoonieChat #HighRiskCovid19
Al @saralicia
A7. #SpoonieChat We're all around you. Somebody you love is definitely #HighRiskCovid19. We're less likely to come out of this alive than you. We deserve protection.
Al @saralicia
A8. #SpoonieChat #HighRiskCovid19 My governor (CO) took strong measures at first, but then failed to issue a statewide shelter in place order saying our fear of the Grim Reaper should be the enforcer of social distancing. I can look out my window and see that's not working.
Paige Lauren ♿ (they/them) @__paigelauren__
@tstallone I thought the DMDs and DDSs were had the same privileges, like MDs and DOs, but now I'm not sure. In any case, they have no business writing Rxs for Plaquenil. #SpoonieChat #HighRiskCovid19
Shannon Ragland Lake #HighRiskCovid19 @SocialMediaShan
‘I Will Not Apologize for My Needs' Even in a crisis, doctors should not abandon the principle of nondiscrimination. https://t.co/ambNcuFhOR #Disabled #CivilRights #ADA #SpoonieChat #VictimOfTriage #RationingOfCare #COVID19 #HighRiskCOVID19 #MedicalEthics
Teresa M. Stallone @tstallone
@__paigelauren__ I thought so too. I’m not sure now. Exactly. Regardless of the privilege, it is harmful, unethical, & disgusting. #SpoonieChat #HighRiskCovid19
Al @saralicia
A9: #SpoonieChat #HighRiskCovid19 I don't need these meds, personally, but I'm very concerned by what I'm hearing.
Al @saralicia
A10. #SpoonieChat #HighRiskCovid19 I hadn't even heard of that till now.
Tina @Nice_White_Lady
A9 I’m disgusted. So far, the meds my insurance company still allows me to buy are available, but I’m horrified by what other people are experiencing. CARA showed us how quickly disabled people will be tossed aside to please non-disabled people. #HighRiskCovid19 #SpoonieChat
Tina @Nice_White_Lady
A10 No! Thanks for the info. #SpoonieChat #HighRiskCovid19
Mat @imfuckinggai
RT @SFdirewolf: FUCK ICE #HighRiskCovid19 #COVID19 #COVIDー19 #COVID2019 #SpoonieChat #CripTheVote
Shannon Ragland Lake #HighRiskCovid19 @SocialMediaShan
#Disabled #CivilRights #ADA #SpoonieChat #Spoonie #ChronicIllness #VictimOfTriage #RationingOfCare #COVID19 #HighRiskCOVID19 #MedicalEthics #Pandemic #VentilatorAllocation
Tinu @Tinu
RT @FragrantGrace: @Tinu Okay - so Amazon stopped the dudes that were upselling hand sanitizer. I saw face masks on the internet for like 2…
Keilet @keilet
Anders helped me with my #SpoonieChat responses tonight. Time to feed him to pay him for his hard work. https://t.co/YqlGotklN9
Shannon Ragland Lake #HighRiskCovid19 @SocialMediaShan
Whose Life is Worth Saving? In Washington State, People With #Disabilities Are Afraid They Won’t Make the Cut. https://t.co/4C5NysKBm3 #Disabled #CivilRights #ADA #SpoonieChat #RationingOfCare #COVID19 #HighRiskCOVID19 #MedicalEthics #Pandemic #Triage #VentilatorAllocation
RaquelRoschell @raquelonpurpose
RT @DawnMGibson: Q10: #SpoonieChat: - Have you enrolled in the #HighRiskCOVID19 patient support program? https://t.co/NjBxajRKnP w/ @Creaky
RaquelRoschell @raquelonpurpose
RT @Tinu: A1. I’m Tinu, I founded #EverywhereAccessible last year. I’m immunocompromised and trying not to be scared. #SpoonieChat
Bell @belltilmon
RT @BeingCharisBlog: @DawnMGibson A9: I don't even want to read this, but I've seen this floating around today. #SpoonieChat #HighRiskCovid
Bell @belltilmon
RT @joannaspaghetti: @DawnMGibson A7 #SpoonieChat the disability community is so commonly thrown under the bus already... I think a lot of…
teeAIRraaa @tee_air_raaa
RT @FragrantGrace: @Tinu Okay - so Amazon stopped the dudes that were upselling hand sanitizer. I saw face masks on the internet for like 2…
Staying Home with 4q35! @rebeccapragnell
RT @SocialMediaShan: As A #Disabled Person, I'm Afraid I May Not Be Deemed Worth Saving From The #Coronavirus | HuffPost #SpoonieChat #High
Shannon Ragland Lake #HighRiskCovid19 @SocialMediaShan
#Disability #Discrimination Complaint Filed With @HHSOCR Over #COVID19 #TreatmentRationing Plan in Washington State #Disabled #CivilRights #ADA #ACA #SpoonieChat #RationingOfCare #COVID19 #HighRiskCOVID19 #MedicalEthics #Pandemic #Triage #VentilatorAllocation
Shannon Ragland Lake #HighRiskCovid19 @SocialMediaShan
@diamantemonet @DawnMGibson @ArthritisFdn @ACRheum @LupusOrg A9 (cont2): Thanks for pointing that out! Somehow I missed it (I took some time off SocMe for self care today)! https://t.co/dlaXNeM3Sv #SpoonieChat
#SpoonieChat content from Twitter.