#SpoonieChat Transcript
Healthcare social media transcript of the #SpoonieChat hashtag.
– ().
See #SpoonieChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Sharon the Crohnie @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 alerts when someone buys 60 boxes of face masks. I'm scared to get my immune suppressant infusion. But it's a biologic. If I don't, will my body reject it later? #SpoonieChat |
 | 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, Empress of Twerk, Thirst of My Line @Tinu RT @sl3limitless: A7: A7: It’s not just the elderly that are at risk. Chronic illness occurs at any age, and and those with #chronicillness are part of the vulnerable population (as are the pregnant) impacted by #COVID2019 #HighRiskCovid19 |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @DawnMGibson: Q8: #SpoonieChat: Q8: #SpoonieChat: - Do you feel that your State/Province & society take the pandemic seriously enough? #HighRiskCOVID19 @DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the... https://t.co/ekdiU1BAjL |
 | Shannon Ragland Lake @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 BECAUSE we’re #SocialDistancing. And it protects everyone. Not just high risk people. #SpoonieChat |
| Teresa M. Stallone @tstallone @__paigelauren__ I agree. I did not know a dentist could even prescribe Plaquenil! #HighRiskCovid19 #SpoonieChat |
 | Pam @pamdwriter RT @helenrottier: A4: A4: I wish people would learn from the disability community and eliminate the toxic productivity culture from school and workplaces. Slow, deliberate work can be the best work. #SpoonieChat |
| 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 @SocialMediaShan A10: Yes, as a #HighRiskCOVID19 person. All resources I can access right now at this scary time are valuable. #SpoonieChat |
 | amber @ORPHEUSGIRL RT @helenrottier: A4: A4: I wish people would learn from the disability community and eliminate the toxic productivity culture from school and workplaces. Slow, deliberate work can be the best work. #SpoonieChat |
 | 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 of Detroit ♿ (they/them) @detroitxpaige @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 |
 | 💖💄 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 |
 | Laura @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 |
 | C𝑟𝑖𝑠𝑡𝑖𝑛𝑒𓅫 🐰 ✉️ @Owl_ofthewoods @DawnMGibson @CreakyJoints Just enrolled! Thank you, Dawn. #spooniechat |
 | Al Jordan @ActuAli21 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 of Detroit ♿ (they/them) @detroitxpaige @tstallone Same! I thought dentists were able to prescribe antibiotics, pain meds, and only a few other medications. #HighRiskCovid19 #SpoonieChat |
| Shannon Ragland Lake @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 |
| Dawn M Gibson @DawnMGibson RT @Nice_White_Lady: A5: 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 |
| Dawn M Gibson @DawnMGibson RT @tstallone: Thank you, Dawn! Take care everyone! #Spooniechat #HighRiskCovid19 |
| Michelle @wordsbymj RT @SocialMediaShan: A9 (cont): 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 |
| Dawn M Gibson @DawnMGibson RT @tstallone: A10: 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 when it’s prime allergy season is the scary part. #SpoonieChat |
| C𝑟𝑖𝑠𝑡𝑖𝑛𝑒𓅫 🐰 ✉️ @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, Empress of Twerk, Thirst of My Line @Tinu RT @OakAndRedwood9: @DawnMGibson A8: @DawnMGibson A8: #SpoonieChat My state seems to be (CA), but it didn't feel fast enough. My county took far too long to close schools/initiate shelter-in-place orders. & there is still little to no information for those of us with chronic illnesses with family still at work. #HighRiskCovid19 |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @UnxpctdAdvocate: @DawnMGibson A8 - my city definitely is. @Ron_Nirenberg is doing a great job. But @GovAbbott is NOT. The whole state should be shelter in place. I love my city & my ppl here in #SanAntonioTX. I'm proud of all we are doing as highlighted by @ExpressNews #SpoonieChat #HighRiskCovid19 |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @DawnMGibson: A8: A8: I'm happy that the State of Michigan is taking it seriously, but individuals could do better. #HighRiskCOVID19 |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @BeingCharisBlog: @DawnMGibson A8: @DawnMGibson A8: #SpoonieChat #Sacramento officials were *encouraging* known exposures to go about their daily lives 2 weeks ago, in a county where we had the nation's 1st confirmed case of community-spread #COVID19 at the end of Feb. This puts mine & other #HighRiskCovid19 lives in danger. |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @itsmorenamorena: A8: A8: Georgia isn't doing enough. The City of Atlanta and some surrounding counties seem to be with #StayAtHome restrictions. I'd like the @GovKemp to protect #Hydroxychloroquine because I'm dreading not getting my next refill, #SpoonieChat #HighRiskCovid19 |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @keilet: A8: 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 to be more explicit (e.g., people going to the beach!) with instructions and guidelines that are necessary to keep the public safe. #HighRiskCOVID19 |
| 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, Empress of Twerk, Thirst of My Line @Tinu RT @JediMaster941: A8: A8: More and more every day. Yesterday though. Our county commissioner basically said "Stay home, unless you don't want to" They aren't doing enough to #FlattenTheCurve Chinese police literally nailed our friends into their apartment. We need to do that! #HighRiskCovid19 |
| Laura @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 Jordan @ActuAli21 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. |
| Dawn M Gibson @DawnMGibson #SpoonieChat #HighRiskCovid19 |
| Shannon Ragland Lake @SocialMediaShan #Lupus Patient Thanked for ‘Sacrifice’ After #COVID19 Drug Denial | The Mighty #SpoonieChat #HighRiskCovid19 #RationingOfCare #DrugShortage #rheum #spoonie https://t.co/ddISLDe3lk |
| 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 |
| Al Jordan @ActuAli21 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. |
| 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! ☺️ |
| Shannon Ragland Lake @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 |
| 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 Maddalena Ducas @sickfemme RT @DawnMGibson: Q2: #SpoonieChat: Q2: #SpoonieChat: - How’re you doing? @DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found... https://t.co/gSdwLun0L8 |
 | SqueakyWheel ☮❤🌻🇺🇦 @SqueakyAnna RT @MichaelKuluva: @DawnMGibson A3 : @DawnMGibson A3 : I am working right now as an essential service so I am seeing this almost from front lines or should I say across from the front lines. Everyone is keeping their distance & only leaving their homes if necessary. I think it has really sunken in for most people! #SpoonieChat |
| Shannon Ragland Lake @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 Jordan @ActuAli21 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 Jordan @ActuAli21 A5. #SpoonieChat Horror/Suspense |
| Shannon Ragland Lake @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 #HighRiskCOVID19 #RationingOfCare #TriageVictim https://t.co/VKU51INB00 |
 | Kelly “Nerdzilla” Mendenhall (she/her) @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 @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 |
 | Chrisa Hickey @Chrisa_Hickey RT @DawnMGibson: A10: 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 Jordan @ActuAli21 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 Jordan @ActuAli21 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. |
| Shannon Ragland Lake @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 Jordan @ActuAli21 A9: #SpoonieChat #HighRiskCovid19 I don't need these meds, personally, but I'm very concerned by what I'm hearing. |
| Al Jordan @ActuAli21 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 |
| Shannon Ragland Lake @SocialMediaShan #Disabled #CivilRights #ADA #SpoonieChat #Spoonie #ChronicIllness #VictimOfTriage #RationingOfCare #COVID19 #HighRiskCOVID19 #MedicalEthics #Pandemic #VentilatorAllocation |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @FragrantGrace: @Tinu Okay - so Amazon stopped the dudes that were upselling hand sanitizer. I saw face masks on the internet for like 250% increase in price. Someone needs to tackle those folks. We need new pandemic purchasing laws. #SpoonieChat |
 | 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 @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: Q10: #SpoonieChat: - Have you enrolled in the #HighRiskCOVID19 patient support program? https://t.co/NjBxajRKnP w/ @CreakyJoints? It’s probably time! @DawnMGibson founded the The Original #SpoonieChat back in the... https://t.co/eplJmJzV4O |
| 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: @DawnMGibson A9: I don't even want to read this, but I've seen this floating around today. #SpoonieChat #HighRiskCovid19 ID: a blurred picture of someone holding a box of plaquenil 200 mg for the camera https://t.co/wbASDHv4BI |
| Bell @belltilmon RT @joannaspaghetti: @DawnMGibson A7 #SpoonieChat the disability community is so commonly thrown under the bus already... I think a lot of abled people really don't understand how likely it is for the US medical system to just disregard us/our lives completely. like, for example, kai*ser's statement on HCQ today. |
 | $RunMeMyReparations (Cashapp) @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 250% increase in price. Someone needs to tackle those folks. We need new pandemic purchasing laws. #SpoonieChat |
| Shannon Ragland Lake @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 @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.