#SpoonieChat Transcript
Healthcare social media transcript of the #SpoonieChat hashtag.
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See #SpoonieChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Audrey R Sutton @audreyrsutton Hey I'm Audrey. I have a date tomorrow so I got a haircut today. It was more of a trim than a full cut, but it was also less than $20 so I'm okay with that. Almost passed out after though, oops! That's what I have puppy for but I left him home #SpoonieChat https://t.co/5pqZHpVNOk |
 | Holly Smith @HollyESmith1 RT @DawnMGibson: A4: A4: So true! #SpoonieChat https://t.co/UElWdr0jBL |
 | Lily Calder ♿️🏳️🌈 @paperstainedink NAPS. I love naps. Also pacing myself. And making sure that if I can't make food, I have enough ready-to-eat food that I can eat to gain back a spoon or two. But quite often, there is no getting back a spoon. The spoons are limited. I can't always pay for extra. #SpoonieChat https://t.co/7icewJFfae |
 | Dawn M Gibson @DawnMGibson RT @Meryals: @DawnMGibson A6: @DawnMGibson A6: that you can't always just push through it. Sometimes you just have to stay in bed. That just because I'm smiling doesn't mean that I'm not in extreme pain (are we supposed to just mope around all of the time?) The pain doesn't always show, but it's there #spooniechat |
 | Tina @Nice_White_Lady A2 It means a lot, especially for my mental health. #SpoonieChat https://t.co/VY8AI1DnV5 |
| Dawn M Gibson @DawnMGibson I'm here for about 20 more minutes. @ me if you'd like that. #SpoonieChat |
| Dawn M Gibson @DawnMGibson RT @Nice_White_Lady: A2 It means a lot, especially for my mental health. #SpoonieChat https://t.co/VY8AI1DnV5 |
 | Alice’s Nightmare, DNP, NP-C @AliWonderHell #SpoonieChat A5. Again, offered no. However I DO know why I have pain and fatigue. I figured it out for myself. And I know MY health, my contributing factors and my presentation fairly well now. I function remarkably well for my issues BECAUSE I understand why and how to manage |
 | Tinu, Empress of Twerk, Thirst of My Line @Tinu A3. Having fatigue is like: ✅Being a battery on a smartphone at 3% with 4 charge-draining tasks to do ✅ Starting an extra 200m/yards behind in a 1000m/yards race ✅Always cancelling, rarely accommodated ✅Feeling from a planet with different speed defaults. #SpoonieChat https://t.co/an1OOWBasR |
| Tina @Nice_White_Lady A3 It’s like the flu without the sympathy. #SpoonieChat https://t.co/e75ryioy8M |
| Audrey R Sutton @audreyrsutton It can mean feeling seen, but a lot of the time it feels like being judged especially when it comes to pain. The backlash from drug companies pushing opioids hurt patients&our ability to get our pain managed, especially by doctors who are too scared to prescribe any #SpoonieChat https://t.co/kpwrQWpDhQ |
| Audrey R Sutton @audreyrsutton RT @DawnMGibson: #SpoonieChat: #SpoonieChat: We're talking about the interior/personal experiences of #ChronicPain & #fatigue. |
 | Lily Blaze / Artist / Writer 🎨 ✍️ @neonvagabond Wow, it went by so fast tonight. Lots of fun answers. I liked the magic 8 ball one the best. #spooniechat |
| Dawn M Gibson @DawnMGibson A6: This is such an important social-physical dynamic for many of us. We need to make our choices and draw our own boundaries as often as possible. #SpoonieChat https://t.co/smLg9W1YrH |
 | #MEAction Network @MEActNet RT @Tinu: A3. Having fatigue is like: ✅Being a battery on a smartphone at 3% with 4 charge-draining tasks to do ✅ Starting an extra 200m/yards behind in a 1000m/yards race ✅Always cancelling, rarely accommodated ✅Feeling from a planet with different speed defaults. #SpoonieChat https://t.co/an1OOWBasR |
| Dawn M Gibson @DawnMGibson RT @Nice_White_Lady: A3 It’s like the flu without the sympathy. #SpoonieChat https://t.co/e75ryioy8M |
 | ReadBetweentheLyme @readbtwnthelyme RT @DawnMGibson: Tonight's #SpoonieChat Questions 6-20-2018: Talking Chronic Pain & Fatigue: Tonight's #SpoonieChat Questions 6-20-2018: Talking Chronic Pain & Fatigue: https://t.co/nlkQtXoVFe |
| #MEAction Network @MEActNet RT @Nice_White_Lady: A3 It’s like the flu without the sympathy. #SpoonieChat https://t.co/e75ryioy8M |
 | Megs @DirrtySunshine @DawnMGibson A9: I'd love to hear from people in the #spooniechat community who are trying to navigate dating while suffering from a chronic illness! I still haven't quite figured that one out. It's hard to find people who understand and/or aren't scared away. #spooniechat |
| Alice’s Nightmare, DNP, NP-C @AliWonderHell #SpoonieChat A6 the most important thing I think people should know is two-fold. 1. Those who live with these are scared to tell anyone because of stigma AND the fear of being dismissed and ignored. |
| Dawn M Gibson @DawnMGibson RT @Meryals: @DawnMGibson A9: @DawnMGibson A9: I'd love to hear from people in the #spooniechat community who are trying to navigate dating while suffering from a chronic illness! I still haven't quite figured that one out. It's hard to find people who understand and/or aren't scared away. #spooniechat |
| Dawn M Gibson @DawnMGibson RT @audreyrsutton: It can mean feeling seen, but a lot of the time it feels like being judged especially when it comes to pain. The backlash from drug companies pushing opioids hurt patients&our ability to get our pain managed, especially by doctors who are too scared to prescribe any #SpoonieChat https://t.co/kpwrQWpDhQ |
| Tina @Nice_White_Lady A4 It feels like my brain is gaslighting my body. I feel pain, but nothing’s broken or bruised. #SpoonieChat https://t.co/4JTxXtnAiC |
| Dawn M Gibson @DawnMGibson A7: I hear you. There are lots of buttons that get pressed. #SpoonieChat https://t.co/QD1Wt7XJgp |
| Dawn M Gibson @DawnMGibson RT @Nice_White_Lady: A4 It feels like my brain is gaslighting my body. I feel pain, but nothing’s broken or bruised. #SpoonieChat https://t.co/4JTxXtnAiC |
| Audrey R Sutton @audreyrsutton Honestly I just feel so tired so much of the time. Not just sleepy, but seriously bone fucking tired. Not to mention my general dizziness & having to take it fairly easy so I dont pass out. #SpoonieChat https://t.co/cVc2TPL5m8 |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu A4. Nothing I could have ever imagined when I was well is sufficient to describe my #chronicpain. It's a whole new level of bad. How do you describe pain that won't end? #SpoonieChat |
| Alice’s Nightmare, DNP, NP-C @AliWonderHell #SpoonieChat A7 work costs me the most energy. But I love what I do, so I give it until I drain myself trying to help others in the ways no one was there to help me.but it exhausts me every single day. |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @DawnMGibson: A4: A4: #SpoonieChat https://t.co/33jbMCBnNJ |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @DawnMGibson: A4: A4: So true! #SpoonieChat https://t.co/UElWdr0jBL |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @AliWonderHell: #SpoonieChat A4. Chronic pain...is merely my reality. I am fortunate, when my care is optimized I live at a 2-3/10. When not I can be at an 8 unremitting. And I cannot remember a night since my son died that I did not have increased pain in the night. |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @viaholiday: A4 when it's bad it's my left side from bottom of rib cage to down my leg being stuck in an electrical outlet on fire #SpoonieChat https://t.co/D1PqpDaB63 |
| Dawn M Gibson @DawnMGibson A7: I hear this. It's real for so many of us. #SpoonieChat https://t.co/xizJfgDfJK |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @Aoiferocksitout: A4) 3) Oh yeah!! One of the kinds of abdominal pain I experience feels like the alien baby in #Alien is about to burst from my abdomen, but it never does, no relief. #SpoonieChat https://t.co/vvpfTQ0itx |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @DawnMGibson: A4: A4: You're very generous to share this. Thanks for being open. #SpoonieChat https://t.co/ys4hjk30xo |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @Aoiferocksitout: A4) 2) The only metaphors for #ChronicPain that even come close, would be Christian hell imagery, and details of never-ending torture. Dante's Inferno would be the most widely recognized metaphor for #ChronicPain, possibly an effective one. #SpoonieChat https://t.co/vvpfTQ0itx |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @Aoiferocksitout: A4 18 years, 24/7 chronic pain,add an additional 6 years where it was chronic,but not non-stop. Untreated #ChronicPain is like being tortured,esp. when the #healthcare community has failed #patients to develop proper #painmanagement over the last few decades bc pills #SpoonieChat https://t.co/vvpfTQ0itx |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @DawnMGibson: A4: A4: #ChronicPain is always there. On one hand, it's drilling holes and draining energy. On the other, it's ready to bust in and take over/away anything I want to do/be. #SpoonieChat https://t.co/kGmlmZuHKJ |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu RT @DawnMGibson: A4: A4: There is a baseline of ache, gnawing, & hot twisting. But the breakthrough pain is ALWAYS ready to pounce like a great white shark on a seal. #SpoonieChat https://t.co/kGmlmZuHKJ |
| Alice’s Nightmare, DNP, NP-C @AliWonderHell #SpoonieChat A8. I do not ever eat many carbs during my day. I cannot afford to eat them, they will shut me down. Caffeine and low carb/high protein eating or I will not make it to the end of any given day. |
| Dawn M Gibson @DawnMGibson A3: #Fatigue #SpoonieChat https://t.co/yt6WlSB6JI |
| Dawn M Gibson @DawnMGibson RT @AliWonderHell: #SpoonieChat A8. I do not ever eat many carbs during my day. I cannot afford to eat them, they will shut me down. Caffeine and low carb/high protein eating or I will not make it to the end of any given day. |
 | Jess Walton - FREE PALESTINE! @JessHealyWalton RT @Tinu: A4. Nothing I could have ever imagined when I was well is sufficient to describe my #chronicpain. It's a whole new level of bad. How do you describe pain that won't end? #SpoonieChat |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu MMJ helped so much. It's an incredible burden to live in a state where it's not legal. If I could leave I would. #SpoonieChat https://t.co/kVc3GA4zUN |
| Tinu, Empress of Twerk, Thirst of My Line @Tinu Being ruthless with breaks. Need another. #SpoonieChat |
| Dawn M Gibson @DawnMGibson A6: Excellent insights into #ChronicPain. #SpoonieChat https://t.co/OoH93B1NJ7 |
| Holly Smith @HollyESmith1 RT @DawnMGibson: A6: A6: This is such an important social-physical dynamic for many of us. We need to make our choices and draw our own boundaries as often as possible. #SpoonieChat https://t.co/smLg9W1YrH |
| Dawn M Gibson @DawnMGibson A3: #Fatigue #SpoonieChat https://t.co/AaR2BgtbcS |
 | Spoon UMB @SpoonUmb It was worth the wait! #onesheetpan meals are the Future! #dinnertime #dinnerparty #dinnertime #chicken #veggies #SpoonieChat @ChowAbroad @omarhern90 @dunkinbuddy https://t.co/QGP7c6tPDt |
| Dawn M Gibson @DawnMGibson A4: #ChronicPain #SpoonieChat https://t.co/GNqqIsLQj9 |
 | Jay Justice ♿️🇯🇲🏳️🌈 @thatjayjustice RT @DawnMGibson: A3: #Fatigue makes me feel like: A3: #Fatigue makes me feel like: 1. A battery that won't charge. 2. Like a life-sized lead statue. 3. Like my body is nailed down. #SpoonieChat https://t.co/hFjTxhIVBy |
| Dawn M Gibson @DawnMGibson A5: #SpoonieChat https://t.co/RkVCxGab5k |
| Jay Justice ♿️🇯🇲🏳️🌈 @thatjayjustice RT @Aoiferocksitout: A4) 2) The only metaphors for #ChronicPain that even come close, would be Christian hell imagery, and details of never-ending torture. Dante's Inferno would be the most widely recognized metaphor for #ChronicPain, possibly an effective one. #SpoonieChat https://t.co/vvpfTQ0itx |
| Dawn M Gibson @DawnMGibson A6: #SpoonieChat https://t.co/dpl218WwoS |
 | Joyce Takako たかこ ♿️🤢💜 @JoyceTakako RT @DawnMGibson: A3: A3: #Fatigue #SpoonieChat https://t.co/yt6WlSB6JI |
| Dawn M Gibson @DawnMGibson A8: #SpoonieChat https://t.co/5xzjbEFyQv |
| Joyce Takako たかこ ♿️🤢💜 @JoyceTakako RT @viaholiday: A4 when it's bad it's my left side from bottom of rib cage to down my leg being stuck in an electrical outlet on fire #SpoonieChat https://t.co/D1PqpDaB63 |
| Audrey R Sutton @audreyrsutton Taking a quick break from #SpoonieChat to clean up my room while I've got the momentum from my shower moving me |
| Dawn M Gibson @DawnMGibson Darlings, thanks for another lovely & amazing #SpoonieChat session. I gotta bounce now, but feel free to keep answering. |
 | Chronically Undiagnosed @queenofnodx That it affects mind body and soul. I can be "resting" but still feel terrible. And not have the energy to even respond to messages or something. #SpoonieChat https://t.co/1FIeBs2zo9 |
| Jay Justice ♿️🇯🇲🏳️🌈 @thatjayjustice RT @AliWonderHell: #SpoonieChat A7 work costs me the most energy. But I love what I do, so I give it until I drain myself trying to help others in the ways no one was there to help me.but it exhausts me every single day. |
 | Sharon the Crohnie @FragrantGrace A6 If I could control it, believe me I would. #SpoonieChat https://t.co/EVhv2A4pz3 |
 | Savvy Cooperative | #AskPatients @savvy_coop Stories needed from those who have been forced to switch to #Humira, either while taking or being newly prescribed a different med (like Cimzia, Enbrel, Remicade, etc). If that’s you, get in touch and share your #PatientExperience! #rheum #ibdchat #ibd #SpoonieChat https://t.co/qPozbj9xRV |
| Sharon the Crohnie @FragrantGrace A7 Def extended family drama. Can't put my phone on do not disturb fast enough. #SpoonieChat https://t.co/cuStArn2VZ |
| Sharon the Crohnie @FragrantGrace Tweet of the century for those suffering chronic pain and fatigue!! #SpoonieChat https://t.co/BupSFS6Y1C |
| Sharon the Crohnie @FragrantGrace A8 Put on the brakes. What matters most is done in the morning. After that it's a bonus if anything gets done. If fatigue overwhelms me, I just put on the brakes. That's it. I'm done. #SpoonieChat https://t.co/vuHMOMceWw |
 | Girls With Guts @IBDgirls RT @savvy_coop: Stories needed from those who have been forced to switch to #Humira, either while taking or being newly prescribed a different med (like Cimzia, Enbrel, Remicade, etc). If that’s you, get in touch and share your #PatientExperience! #rheum #ibdchat #ibd #SpoonieChat https://t.co/qPozbj9xRV |
 | Angela Cohen @angelee828 RT @savvy_coop: Stories needed from those who have been forced to switch to #Humira, either while taking or being newly prescribed a different med (like Cimzia, Enbrel, Remicade, etc). If that’s you, get in touch and share your #PatientExperience! #rheum #ibdchat #ibd #SpoonieChat https://t.co/qPozbj9xRV |
 | nobism @nobismhealth RT @savvy_coop: Stories needed from those who have been forced to switch to #Humira, either while taking or being newly prescribed a different med (like Cimzia, Enbrel, Remicade, etc). If that’s you, get in touch and share your #PatientExperience! #rheum #ibdchat #ibd #SpoonieChat https://t.co/qPozbj9xRV |
 | chronically ill @Rdoherty102 @DawnMGibson A1 a very, very tired working girl. #SpoonieChat |
| chronically ill @Rdoherty102 @DawnMGibson A2 it just irritates me. It's a lot of "you shouldn't be in this much pain, you're scamming for drugs etc" #SpoonieChat |
| Audrey R Sutton @audreyrsutton Some days are better than others & some are worse, but it's pretty much always there. And it makes you tired faster & your brain slower bc all of it takes a toll on you & it just grows over time, making you more tired. You don't reset every morning #SpoonieChat https://t.co/d3isnw67ag |
| chronically ill @Rdoherty102 @DawnMGibson A3 I'm tired all the time. It's hard to do basic things and I never feel rested. It's like walking around with weights on my limbs 24/7. #SpoonieChat |
| chronically ill @Rdoherty102 @DawnMGibson A4 everything hurts all the time. #SpoonieChat |
| chronically ill @Rdoherty102 @DawnMGibson A5 nope. They said I might have fibromyalgia and left it as that. #SpoonieChat |
| chronically ill @Rdoherty102 @DawnMGibson A6 it's 24/7 and I can't make it stop just cause I'm busy. #SpoonieChat |
 | Lisa Davis Budzinski @lisadbudzinski RT @savvy_coop: Stories needed from those who have been forced to switch to #Humira, either while taking or being newly prescribed a different med (like Cimzia, Enbrel, Remicade, etc). If that’s you, get in touch and share your #PatientExperience! #rheum #ibdchat #ibd #SpoonieChat https://t.co/qPozbj9xRV |
| chronically ill @Rdoherty102 @DawnMGibson A7 being outside or with others. Anything with a big temp change or extreme emotion. It just takes a lot out of me. #SpoonieChat |
| Audrey R Sutton @audreyrsutton From ya'll yes: pain makes you tired, the end. Well, not always the end but being in pain is exhausting so of course I'm tired. Though recently I was given the other half of my exhaustion equation, that being a diagnosis where fatigue is part of my symptoms #SpoonieChat https://t.co/X8MtOdrBVr |
| chronically ill @Rdoherty102 @DawnMGibson A8 rest!!!! Hydrate! Take care of myself. #SpoonieChat |
| chronically ill @Rdoherty102 @DawnMGibson A9 #SpoonieChat https://t.co/vYPZfAhrvo |
#SpoonieChat content from Twitter.