#SpoonieChat Transcript
Healthcare social media transcript of the #SpoonieChat hashtag.
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See #SpoonieChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Dawn M Gibson @DawnMGibson We've got about 30 minutes left of #SpoonieChat. Please @ me with any further insights into #PainSomnia /sleep convos. You can see all our Qs here: https://t.co/eDf629xRMG |
 | 💖💄 Aoife ♿💜 @Aoiferocksitout @alexhaagaard @DawnMGibson I'm sorry, that's so wrong. I'm relieved you have one helpful doctor, though! <3 #SpoonieChat |
 | Democracy Over Demagogues @freeandclear1 @DawnMGibson A1 first time saying hi. Suki, she/her, chronic migraine, idiopathic intercranial hypertension, MCS/EI, some MI stuff. #SpoonieChat |
| Dawn M Gibson @DawnMGibson A8: #SpoonieChat Do you feel that a pharmacist could help develop a list of sleep med options? https://t.co/ChbZ7lhXyU |
 | Tapati 🇺🇦 @tapati A8 HAHAHAHA...um, no, I've been an insomniac since childhood and before I became a spoonie officially I'd already read about my sleep phase issue and insomnia in general. Depression treatment covered hygiene. I have my own sleep plan and strategy. #SpoonieChat |
| Tapati 🇺🇦 @tapati A8 Seriously, when you are a fat patient, most docs will tell you weight loss is the answer no matter what you bring up. I've had some docs with broader minds but not lately. :( #SpoonieChat https://t.co/1Ur2zDqWgZ |
| Dawn M Gibson @DawnMGibson RT @tapati: A8 Seriously, when you are a fat patient, most docs will tell you weight loss is the answer no matter what you bring up. I've had some docs with broader minds but not lately. :( #SpoonieChat https://t.co/1Ur2zDqWgZ |
| Dawn M Gibson @DawnMGibson RT @tapati: A8 HAHAHAHA...um, no, I've been an insomniac since childhood and before I became a spoonie officially I'd already read about my sleep phase issue and insomnia in general. Depression treatment covered hygiene. I have my own sleep plan and strategy. #SpoonieChat |
 | Audrey R Sutton @audreyrsutton Pain, pain, and getting my brain to shut up. Also being too warm. Really hoping to fix these in the next few months now that I've got the ball rolling. #SpoonieChat https://t.co/TJzugp0Ha0 |
 | chronically ill @Rdoherty102 @DawnMGibson A9 nope. They won't even write me a script for painkillers. Just tell me to take Advil & Tylenol. #SpoonieChat |
| chronically ill @Rdoherty102 @DawnMGibson A10 doctors don't believe I'm in pain, family says to just get over it, my doctors keep saying it's the other doctors problem. #SpoonieChat |
| Audrey R Sutton @audreyrsutton @alexhaagaard apparently it's actually super common? for pt i can join an (out of pocket) program that 16 weeks 2x/wk w other patients & I'm considering it esp since if I have it too there'll be docs there to see it #SpoonieChat |
 | SleepLikeABaby @sleeplikeababy1 RT @tapati: A8 HAHAHAHA...um, no, I've been an insomniac since childhood and before I became a spoonie officially I'd already read about my sleep phase issue and insomnia in general. Depression treatment covered hygiene. I have my own sleep plan and strategy. #SpoonieChat |
 | Florence @yoyoitsflo @alexhaagaard @kelsdi @DawnMGibson Mine don't communicate either. I'm like the liaison which is just more work #SpoonieChat |
| Tapati 🇺🇦 @tapati Here is a pad that was recommended to me for coping with over heating at night--haven't bought it yet: https://t.co/Nv6fyVNAmk #SpoonieChat |
| Dawn M Gibson @DawnMGibson @alexhaagaard Would it be worth working with a pharm school to see what everybody can see? #SpoonieChat |
| Dawn M Gibson @DawnMGibson RT @Rdoherty102: @DawnMGibson A10 doctors don't believe I'm in pain, family says to just get over it, my doctors keep saying it's the other doctors problem. #SpoonieChat |
| Dawn M Gibson @DawnMGibson I love you too, bro! #SpoonieChat https://t.co/mCxlviGLUY |
| Tapati 🇺🇦 @tapati RT @DawnMGibson: Up next on #SpoonieChat after dark, hot dating tips that are actually c-o-l-d! Vampires are just what the activist ordered. https://t.co/QsQftGy3Rz |
| Audrey R Sutton @audreyrsutton @alexhaagaard @DawnMGibson yes, I need to remember to keep up my salt intake too! (eating salt as a child makes more sense now haha) #SpoonieChat |
| Florence @yoyoitsflo A10 Biggest barrier for me is not knowing what is actually going on. I have a working diagnosis but there's a lot it doesn't explain :( so I'm mostly shooting in the dark, and the docs are too. #SpoonieChat |
| Dawn M Gibson @DawnMGibson Real Talk, I love mean songs. You all know that I'm prone to giggle now and then, dress like a Nun, have taught Sunday school, and have been a missionary, but there is just something about mean... #SpoonieChat |
| Florence @yoyoitsflo @RaBionic @DawnMGibson Wishing you all the best for the surgery and hoping for a smooth recovery! #SpoonieChat |
| Tapati 🇺🇦 @tapati A9 NO. I'd just like to get my PCP not to talk endlessly about my weight so we can move on to things I can do more about. It's like no one has read up on obesity research or evolutionary biology. #SpoonieChat |
| Tapati 🇺🇦 @tapati RT @DawnMGibson: OT can help with routines, gadgets, and other ways to set up your environment for success with disability. #SpoonieChat https://t.co/7WSl41oUxG |
| Dawn M Gibson @DawnMGibson RT @yoyoitsflo: @alexhaagaard @kelsdi @DawnMGibson Mine don't communicate either. I'm like the liaison which is just more work #SpoonieChat |
| Dawn M Gibson @DawnMGibson RT @tapati: A9 NO. I'd just like to get my PCP not to talk endlessly about my weight so we can move on to things I can do more about. It's like no one has read up on obesity research or evolutionary biology. #SpoonieChat |
| Florence @yoyoitsflo @tapati Sorry that they focus so much on that and not actually what you're feeling. That's so wrong. #SpoonieChat |
 | ann wall @shopshi RT @DawnMGibson: How #SpoonieChat works! https://t.co/Gx6gScjNmd |
| Tapati 🇺🇦 @tapati A 10 #SpoonieChat My liver is becoming an issue as I am not tolerating sleep medications well with liver's ability to metabolize impaired. Don't use often but really need them badly when I do. I'd like to get a blanket support for when I have gout or other foot pain. https://t.co/stkNBS0TkQ |
| Dawn M Gibson @DawnMGibson RT @tapati: A 10 #SpoonieChat My liver is becoming an issue as I am not tolerating sleep medications well with liver's ability to metabolize impaired. Don't use often but really need them badly when I do. I'd like to get a blanket support for when I have gout or other foot pain. https://t.co/stkNBS0TkQ |
 | Auncle di Luvian @illuviel @DawnMGibson A4: Finding comfortable positions is difficult. Changing positions without dislocating something is difficult. Tinnitus makes relaxation difficult. This is a small slice. #SpoonieChat |
| Florence @yoyoitsflo @actuallying @alexhaagaard @DawnMGibson Oh interesting. Maybe I should try it. I've just always been told not too. Oh I see physiatrist! They can be pretty helpful. Usually have strong understanding of joints, muscles, etc. They can be pretty creative with treatment ideas too. #SpoonieChat |
 | 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: #SpoonieChat: #PainSomnia - webauntie: #SpoonieChat: #PainSomnia - webauntie: @DawnMGibson founded The Original #SpoonieChat in 2013. You can... https://t.co/5Neuj84QGv |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @MyRAteam1: Sometimes it's just easier to pretend things are NOT as painfully difficult as they are... On myRAteam, open honesty is encouraged! Sign up to be real with others who know: https://t.co/C5KktIUMnC #rheumatoid #rheum #RAawareness #SpoonieChat #CreakyChats https://t.co/ls0djFVMHI |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: How #SpoonieChat works! https://t.co/Gx6gScjNmd |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: Q1: #SpoonieChat: Q1: #SpoonieChat: - Who are you? Please introduce yourself in a way you’re comfortable with. How’d you... https://t.co/0ylMUcWYrf |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: A1: A1: I'm Dawn, the #Spondylitis patient from Detroit. I founded the #SpoonieChat hashtag and community in 2013. https://t.co/0MlFeqFXq8 |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: A1: A1: I made this #PainSomnia video with @Spondylitis & @Novartis. I hope you'll watch it. https://t.co/vaIxLXF8Ny #SpoonieChat https://t.co/0MlFeqFXq8 |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: Q2: #SpoonieChat: Q2: #SpoonieChat: - What’s happening? What are you reading, watching, listening to, or up to these days? https://t.co/SE3iQNCUAC |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @Nice_White_Lady: A1. Hi, I’m Tina. Mom of 2, longtime spoonie chatter, collector of D/Rx’s, and drinker of brown alcohol. #spooniechat |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: A2: A2: I'm ALL about Killing Eve right now. Wow! #SpoonieChat https://t.co/LHMVPNaYYb |
| Florence @yoyoitsflo @alexhaagaard 😩😩😩ugh, that's terrible!!! Omg wow, it'll be right there in their face plus us being like this had to be connected. What I'm dealing with right now. The answers are somewhere in my medical history lol #SpoonieChat |
| Tapati 🇺🇦 @tapati RT @DawnMGibson: A4: A4: Adequate sleep and rest aren't always possible for me. It's hard to find/keep a comfortable position. Pain can wake me up. Sometimes I'm VERY wound up, especially if activity levels are lower. #SpoonieChat https://t.co/rzEvjCnbAu |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @Aoiferocksitout: @DawnMGibson A1 Aoife NYC Gastroparesis and other medical mysteries, advocate, writer, TV Maven #SpoonieChat |
| Tapati 🇺🇦 @tapati RT @audreyrsutton: Pain, YES. And one of my meds makes it so I have heat exhaustion for most of the summer which means I can't sleep bc I'm too warm. I also keep the heat off at night all winter. Hoping to fix that soon though. #SpoonieChat https://t.co/2Dt0x6nxW7 |
| Auncle di Luvian @illuviel @DawnMGibson Painsomnia is something I’m familar with. See also previous answer. Also, any treatment I’ve had meant to improve sleep has not worked as planned. #SpoonieChat |
| Florence @yoyoitsflo @alexhaagaard @actuallying @DawnMGibson Oh that's awesome. I gotta look into that! Omg, taping has been a lifesaver for my knees! #SpoonieChat |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: #SpoonieChat, we're talking #PainSomnia again tonight. I'm eager to include your perspectives in an upcoming research proposal. Please help us develop our understanding of #pain and sleep. |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: Q3: #SpoonieChat: Q3: #SpoonieChat: - Please share the top 3-5 words you associate with sleep, rest, & your health... https://t.co/j2JYWzOmuc |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: Q4: #SpoonieChat: Q4: #SpoonieChat: - Do you feel that adequate rest & sleep are possible for you? Why/not? https://t.co/6THeuNwgjn |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: A3: A3: #PainSomnia = pain +fatigue +restlessness +start ALL OVER! Pain & fatigue feed restlessness. Restlessness feeds sleeplessness. Sleeplessness feeds pain & fatigue. #SpoonieChat https://t.co/PSwfqNJ8md |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: A4: A4: Adequate sleep and rest aren't always possible for me. It's hard to find/keep a comfortable position. Pain can wake me up. Sometimes I'm VERY wound up, especially if activity levels are lower. #SpoonieChat https://t.co/rzEvjCnbAu |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: A1: A1: #SpoonieChat https://t.co/XesErwYeNY |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: Q5: #SpoonieChat: Q5: #SpoonieChat: - Does your pain, treatments, or other aspects of your health interfere with sleep or... https://t.co/4pV4dlSZ3x |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: A2: A2: #SpoonieChat https://t.co/ycKj7DKhcp |
| Dawn M Gibson @DawnMGibson Annnnnnd I'm a pumpkin! See you on the flip-side. #SpoonieChat https://t.co/76diDN5Cb5 |
| Florence @yoyoitsflo @alexhaagaard Glad it's coming together but yes it didn't need to take this long!!! #SpoonieChat |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: A5: A5: Pain makes it hard to get/stay comfortable. Caffeine helps with pain/fatigue but makes it hard to settle down. It's hard to quiet my mind sometimes. #SpoonieChat https://t.co/CTgr0lPSBM |
| Audrey R Sutton @audreyrsutton @alexhaagaard dysautonomia is alllllll about the sitting weirdly curled up in your chair. but also my feet don't reach the ground. also my desk is small by design so I only sit at it for actual typing/writing #SpoonieChat |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: Q6: #SpoonieChat: - Please describe quality/character of Sleep Hygiene convos w/health care team: Q6: #SpoonieChat: - Please describe quality/character of Sleep Hygiene convos w/health care team: Ex:... https://t.co/K1D5JkTpAB |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: Q6: Q6: This seemed important to the membership the last time we talked. PLEASE let me know how these convos are going. #SpoonieChat https://t.co/61MUZEX8rM |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @Nice_White_Lady: A5 Yes. I’m supposed to take a stimulant in the morning, but it can keep me up at night. But if I don’t take it, I want to nap during the day, which keeps me up at night. #SpoonieChat |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: Q7: #SpoonieChat: Q7: #SpoonieChat: - What do you need your docs to understand about #PainSomnia? Please be specific. https://t.co/cviL2WhPtw |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: A2: A2: #SpoonieChat https://t.co/DDLsiMiZLZ |
| Florence @yoyoitsflo @DawnMGibson Thanks for hosting!!! Was great being able to chat with everyone! #SpoonieChat |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: A6: A6: Great questions! #SpoonieChat https://t.co/16dTqR2c3q |
| Tapati 🇺🇦 @tapati @DawnMGibson Hope you get some good sleep tonight #SpoonieChat |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @Rdoherty102: @DawnMGibson A5 yes! Meds and pain definitely interrupt my sleep! Largest problems are pain & prednisone. #SpoonieChat |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: A7: A7: #SpoonieChat https://t.co/P0ttoIz2OB |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: A7: A7: #SpoonieChat https://t.co/VIMueMgQRH |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: Q8: #SpoonieChat: Q8: #SpoonieChat: - Have you been offered a Sleep Hygiene/ #PainSomnia plan that’s helpful, flexible, or... https://t.co/mZ3HZ59WXj |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: Q9: #SpoonieChat: Q9: #SpoonieChat: - Are you able to address #PainSomnia with your health care team in a meaningful way?... https://t.co/vGRNfJv6Nq |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: Q10: #SpoonieChat: Q10: #SpoonieChat: - What’re the top 3 to 5 barriers to addressing your #PainSomnia? https://t.co/cGjLS5ZxF7 |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: A6: A6: Y-e-s! #SpoonieChat https://t.co/mI7z4A1NQi |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: #SpoonieChat: Please join Me In Our #PainSomnia Sleep Affirmations! - webauntie: #SpoonieChat: Please join Me In Our #PainSomnia Sleep Affirmations! - webauntie: Penny hopes you’re... https://t.co/g8dcCu3VaY |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: We've got about 30 minutes left of #SpoonieChat. Please @ me with any further insights into #PainSomnia /sleep convos. You can see all our Qs here: https://t.co/eDf629xRMG |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @tapati: A8 Seriously, when you are a fat patient, most docs will tell you weight loss is the answer no matter what you bring up. I've had some docs with broader minds but not lately. :( #SpoonieChat https://t.co/1Ur2zDqWgZ |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ RT @DawnMGibson: I love you too, bro! #SpoonieChat https://t.co/mCxlviGLUY |
| 👸🏽💓Mother Strawberry Sativa Pharmaceutica🍓🏥 @Mae_DayJ A1: Hey y'all I'm Maelee. Ive been diagnosed w/ fibro, CFS, IIH, TN, and ASD (lol too tired to type it all) My #brainfog has impaired my ability to work&focus on #SpoonieChat It's an amazing community discussion that I encourage everyone n the #chronicillness comm to check out! https://t.co/CxM9d7bShX |
| Florence @yoyoitsflo @actuallying @alexhaagaard @DawnMGibson Hmm I don't have something specific but the KT Tape Pro website has good videos and stuff for taping different parts. The taping I do on my knees is McConnell taping. #SpoonieChat |
 | Charlotte ציפּורה Issyvoo @CIssyvoo #SpoonieChat I'm late but: As part of my legal battle to get my disability pay back, I have a scary psych eval coming up. So just light stuff: Agatha Christie, Friends. Tried to read a book about Fibro, as I was just diagnosed, but it's too emotional. https://t.co/qYNM6lyOzI |
| Auncle di Luvian @illuviel @DawnMGibson Q6: The last conversation I had was ~ 6 years ago, and semi-productive. (I just remembered 1 med that’s worked.) Before that, lost a neuro who refused to accept the med he rx’d didn’t work for me, even at “half subclinic dose” #SpoonieChat #SpoonieChat |
| Auncle di Luvian @illuviel @kelsdi @alexhaagaard @DawnMGibson Oh, yeah - “romantic is not comfortable; comfortable is not romantic” is a common apology phrase / adjustment request at my house. #SpoonieChat |
 | K. Terry @imaginarymou Sorry I've missed so many Wed. #SpoonieChat's - busy w/ my dad/my health & official diagnosis of Parkinson's: a trifecta of neurological conditions & pissed off no monetary award is given for such a feat! Yes-sarcasm & swearing is how I cope! I've missed my amazing Spoonie family |
 | 💜 Shilo 💜 @FibroShilo I HATE that I always miss #SpoonieChat bc I work Wed nights. But I’ll be reading the tag tonight. If you're a #spoonie & you haven't heard of or joined this chat before, I HIGHLY recommend it!! Check out @DawnMGibson’s Twitter pg for more info. #ChronicLife #fibro #spoonielife |
| K. Terry @imaginarymou @Rdoherty102 @DawnMGibson With few definitive tests to prove many conditions - sorry they won't listen & believe what you are telling them. If no support, can you get a social worker assigned to you - I fought to get one, even if they don't do much - at least a resource & some support. #spooniechat |
| Auncle di Luvian @illuviel @DawnMGibson A7: I have used sleep hygiene techniques for years (“red before bed/blue when day’s new” wrt light -I have a red LED reading light) helps but it’s not panacea. Successful pain management (“distract yourself” does not count) goes a long way for actually decent sleep #SpoonieChat |
| Auncle di Luvian @illuviel @DawnMGibson Q8: I have neither asked nor been offered. I will revisit with next doc. (I have reached the end of my last GP’s knowledge/ability to care for me.) #SpoonieChat |
| Auncle di Luvian @illuviel @DawnMGibson A9: See A8. #SpoonieChat |
#SpoonieChat content from Twitter.