#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients. |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Patient Chat @patientchat Happy Friday #patientchat’ers! I’m Kara from @power4patients and I’m excited about today’s chat with @LAlupusLady |
 | Amanda G @LAlupusLady RT @patientchat: Happy Friday #patientchat’ers! I’m Kara from @power4patients and I’m excited about today’s chat with @LAlupusLady |
| Patient Chat @patientchat We’re excited to have guest @LAlupusLady here, who is engaged healthcare activist living with Lupus and other autoimmune conditions #patientchat |
| Amanda G @LAlupusLady Thank you @patientchat 💜 I am a lupus patient, advocate and activist who is also celebrating Fibromyalgia and Mental Health Awareness Months. Starting with #patientchat because connection is key, today and from now on. https://t.co/NU88Xi7MG3 |
| Patient Chat @patientchat You can find out more about Amanda here: https://t.co/KkkTqXOfng #patientchat |
| Amanda G @LAlupusLady RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients. |
| Amanda G @LAlupusLady RT @patientchat: We’re excited to have guest @LAlupusLady here, who is engaged healthcare activist living with Lupus and other autoimmune conditions #patientchat |
 | Alexa Jett 🦋 @ohhiialexa Hello #patientchat! I’m Alexa Jett ❤️ Thyroid Cancer Survivor, #AYACancer Advocate, and Blogger in East Texas. So good to connect with you today. Happy that @LAlupusLady is our special guest! 🦋🦋🦋 |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| Amanda G @LAlupusLady RT @patientchat: Join/Share: Join/Share: "Community Check-In" Empowered #patientchat Friday 5/1 at 1pmET https://t.co/bNirFzbN7i #epatient #ptexp #s4pm #hcsm #hcsmca #hcldr #patientadvocacy #patientcommunity https://t.co/XDIQ78ciAQ |
 | Carly Flumer (she/her) @carlyflumer Hi everyone! I’m Carly, an #AYA #thyca patient. #patientchat |
| Patient Chat @patientchat Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat |
| Amanda G @LAlupusLady #Lupus Warrior mode for #patientchat on the 1st day of May! |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/fs20NR954d #patientchat |
| Amanda G @LAlupusLady RT @patientchat: Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat |
| Amanda G @LAlupusLady RT @patientchat: You can view our Chat Etiquette and Guidelines at https://t.co/fs20NR954d #patientchat |
 | Laurie Reed @LReedptadvocate @patientchat Laurie, patient advocate, tweeting from the beautiful state of Oregon! #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Best Practices for Participating in a Patient Community https://t.co/40G6kGrKue https://t.co/uMn3F4rLfx |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
 | Patient Empowerment Network @power4patients RT @ohhiialexa: Hello #patientchat! I’m Alexa Jett ❤️ Thyroid Cancer Survivor, #AYACancer Advocate, and Blogger in East Texas. So good to connect with you today. Happy that @LAlupusLady is our special guest! 🦋🦋🦋 |
| Patient Empowerment Network @power4patients RT @LAlupusLady: Thank you @patientchat 💜 I am a lupus patient, advocate and activist who is also celebrating Fibromyalgia and Mental Health Awareness Months. Starting with #patientchat because connection is key, today and from now on. https://t.co/NU88Xi7MG3 |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
 | Marcela Musgrove @marcela RT @patientchat: Today's #patientchat topic is Best Practices for Participating in a Patient Community https://t.co/40G6kGrKue https://t.co/uMn3F4rLfx |
 | Alan Brewington @abrewi3010 Alan here. Had an mri on my neck on Tuesday. Surgeon is afraid it is attacking the next disk already. How are you? #patientchat |
| Amanda G @LAlupusLady RT @patientchat: Today's #patientchat topic is Best Practices for Participating in a Patient Community https://t.co/40G6kGrKue https://t.co/uMn3F4rLfx |
| Patient Chat @patientchat T1: What was your initial reaction to dealing with a chronic disease and a pandemic? #patientchat https://t.co/VXrG6lQqS6 |
| Amanda G @LAlupusLady RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T1: T1: What was your initial reaction to dealing with a chronic disease and a pandemic? #patientchat https://t.co/VXrG6lQqS6 |
| Amanda G @LAlupusLady @abrewi3010 Hi Alan #patientchat |
| Marcela Musgrove @marcela @patientchat Joining in from NC, I'm active in mental health and autism communities #patientchat |
 | Diverse Health Hub @DHealthhub RT @patientchat: Today's #patientchat topic is Best Practices for Participating in a Patient Community https://t.co/40G6kGrKue https://t.co/uMn3F4rLfx |
| Amanda G @LAlupusLady RT @patientchat: T1: T1: What was your initial reaction to dealing with a chronic disease and a pandemic? #patientchat https://t.co/VXrG6lQqS6 |
| Amanda G @LAlupusLady T1 as a person who lives with multiple chronic health conditions, I felt like I had a slight advantage over the rest of the population who isn’t #HighRiskCovid19 - warrior mode in progress. #patientchat https://t.co/id6dl1fm6g |
| Patient Empowerment Network @power4patients RT @LAlupusLady: T1 as a person who lives with multiple chronic health conditions, I felt like I had a slight advantage over the rest of the population who isn’t #HighRiskCovid19 - warrior mode in progress. #patientchat https://t.co/id6dl1fm6g |
| Alexa Jett 🦋 @ohhiialexa T1: Worry and concern, not only for myself, but for everyone in the community. Job losses, insurance, access to care, and medications are just a few things that have been impacted by #Covid_19. #patientchat |
| Alan Brewington @abrewi3010 @LAlupusLady Hi, how are you? Hope you are doing good! #patientchat |
| Amanda G @LAlupusLady @marcela @patientchat Happy #MentalHealthAwarenessMonth #patientchat |
| Carly Flumer (she/her) @carlyflumer T1: Initial reaction was honestly aloofness, which is how I felt when I was diagnosed. I accepted it as a part of my life. #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Hey all - Mighty Casey here, with one eye on #patientchat and one on piece I'm writing for @power4patients blog. Doing the shelter-in-place thing, about to chew my own leg off if it meant I could get back in the pool and swim laps again. Which would be ... funny to watch w/1 leg. |
| Laurie Reed @LReedptadvocate @patientchat T1 - As always, there seem to be more questions than answers. Feeling very vulnerable. #patientchat |
| Amanda G @LAlupusLady @abrewi3010 Guest on #patientchat now and taking over @wegohealth Instagram account today, so having a good May 1st. |
| Amanda G @LAlupusLady RT @MightyCasey: Hey all - Mighty Casey here, with one eye on #patientchat and one on piece I'm writing for @power4patients blog. Doing the shelter-in-place thing, about to chew my own leg off if it meant I could get back in the pool and swim laps again. Which would be ... funny to watch w/1 leg. |
| Alan Brewington @abrewi3010 A3 confusion and sadness. Last September I added heart issues to my chronic life resume which put me in the high risk category. That was a shock to my being, high risk category. #patientchat |
| Marcela Musgrove @marcela @patientchat T1: I was lucky that my doctor adjusted by offering telephone appointments for medication management. I was also able to fill my prescription with online pharmacy so I didn't have to go out. #patientchat |
| Alan Brewington @abrewi3010 @LAlupusLady @wegohealth Congratulations on being master of the universe today! #patientchat |
 | Seth Rotberg @Srotberg15 RT @LAlupusLady: T1 as a person who lives with multiple chronic health conditions, I felt like I had a slight advantage over the rest of the population who isn’t #HighRiskCovid19 - warrior mode in progress. #patientchat https://t.co/id6dl1fm6g |
| Carly Flumer (she/her) @carlyflumer @marcela @patientchat I was lucky to have my prescriptions delivered, even though I can walk to my pharmacy. It’s been great having free delivery. @cvspharmacy #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up... #patientchat |
| Patient Chat @patientchat T2a: Where are your “safe spaces” to share how you are really doing? #patientchat https://t.co/t20vefKDd9 |
| Alan Brewington @abrewi3010 A1 Idaho got hit late into the pandemic. Spent to much time watching the news which made me retreat inward more than I needed. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T2a: T2a: Where are your “safe spaces” to share how you are really doing? #patientchat https://t.co/t20vefKDd9 |
| Amanda G @LAlupusLady RT @patientchat: T2a: T2a: Where are your “safe spaces” to share how you are really doing? #patientchat https://t.co/t20vefKDd9 |
| Alexa Jett 🦋 @ohhiialexa T2a: One on one with some of my cancer friends, Happy Hour at @ElephantsTea, and my @DansHouseofHope family ❤️ #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T1: I've been through all sorts of adventures in my life - talking my way outta police custody in Saudi, sailing through a hurricane - but this has been much more challenging. Feels like my life ... evaporated overnight. #patientchat |
| Alan Brewington @abrewi3010 A2 I don’t have a safe place. For me it’s a timing issue. When do I feel vulnerable enough to seek answers and better pandemic literacy. Although patient advocacy has made huge strides in allowing males space to be vulnerable it doesn’t make it any easier #patientchat |
| Patient Empowerment Network @power4patients @patientchat Check out the companion FB Group to #patientchat It's a private place for this community to come together between chats and support & empower each other everyday https://t.co/9VUoKKYw6R |
| Laurie Reed @LReedptadvocate @patientchat T2a - In long e-mails to friends - searching for connection. #patientchat |
| Amanda G @LAlupusLady @patientchat T2a my “safe spaces” are on a FaceTime with friends... @ItalianMonster8 is on the frontlines of the pandemic in CT so I share and connect with him as much as possible. Thanks to friends and family for keeping me “together” #patientchat |
| Amanda G @LAlupusLady RT @power4patients: @patientchat Check out the companion FB Group to #patientchat It's a private place for this community to come together between chats and support & empower each other everyday https://t.co/9VUoKKYw6R |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T2a: I don't really have 'em right now - my emotional processing engine is conversation w/people, we're all Zoomed out now tho, having conversations with anyone f2f is impossible, virtually requires scheduling. I'm not a natural hermit. #patientchat |
| Patient Chat @patientchat Topic 2b (T2b:) coming up... #patientchat |
| Carly Flumer (she/her) @carlyflumer T2: With other #cancer patients and #rare diseases. Shoutout to @LifewithCancer, @_OurOdyssey_, and @SmithCenterDC! #patientchat |
| Alexa Jett 🦋 @ohhiialexa @LAlupusLady @patientchat @ItalianMonster8 (Had to use gif when I saw the name!!) #patientchat https://t.co/0fK4AR9Sak |
| Patient Chat @patientchat T2b: What are your tips on finding and building such spaces? #patientchat https://t.co/HyxbCUrkIB |
| Amanda G @LAlupusLady RT @ohhiialexa: @LAlupusLady @patientchat @ItalianMonster8 (Had to use gif when I saw the name!!) #patientchat https://t.co/0fK4AR9Sak |
| Patient Empowerment Network @power4patients RT @patientchat: T2b: T2b: What are your tips on finding and building such spaces? #patientchat https://t.co/HyxbCUrkIB |
| Carly Flumer (she/her) @carlyflumer T2b: Use hashtags on Twitter and Instagram to find tweet chats and patients like you! I’ve met some of the best people that way. :) #patientchat |
| Patient Empowerment Network @power4patients RT @carlyflumer: T2b: T2b: Use hashtags on Twitter and Instagram to find tweet chats and patients like you! I’ve met some of the best people that way. :) #patientchat |
| Amanda G @LAlupusLady T2b Search your favorite social media platform and disease specific support groups - soon you will discover an authentic community of friends and “safe places” #patoentchat |
| Amanda G @LAlupusLady RT @patientchat: T2b: T2b: What are your tips on finding and building such spaces? #patientchat https://t.co/HyxbCUrkIB |
| Amanda G @LAlupusLady RT @carlyflumer: T2b: T2b: Use hashtags on Twitter and Instagram to find tweet chats and patients like you! I’ve met some of the best people that way. :) #patientchat |
| Patient Chat @patientchat #patientchat |
| Alan Brewington @abrewi3010 A2b knowledge and improved literacy breed calm and confidence. Look for areas that promote and encourage design thinking for betterment of all. #patientchat |
| Marcela Musgrove @marcela @patientchat T1b I've discovered or rejoined several online communities and group chats recently but it's kind of awkward at the beginning getting to know people. I feel my safe space is more with close friends and family even if it's just over a phone call #patientchat |
| Laurie Reed @LReedptadvocate @MightyCasey I found that grieving was important. Listing all of the things in my own life - big and small - that have been taken away due to the pandemic. Noting was important and somehow helpful as well. #patientchat |
 | Our Odyssey @_OurOdyssey_ RT @carlyflumer: T2: T2: With other #cancer patients and #rare diseases. Shoutout to @LifewithCancer, @_OurOdyssey_, and @SmithCenterDC! #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up... #patientchat |
| Alexa Jett 🦋 @ohhiialexa T2b: For #AYACancer peeps, check out @ElephantsTea’s COVID-19 well updated resource page. You can also follow @wendyegriffith for updates on @MDAndersonNews’s Cancer180 program (open to all AYA’s now) #patientchat https://t.co/bvAqQQhUvg |
| Amanda G @LAlupusLady @patientchat Typing too fast, I just did that... on a saved draft #patientchat https://t.co/0Rqq66E1Xm |
| Patient Chat @patientchat T3: What do you find helpful in reducing stress and anxiety during this difficult time? What are some resources? #patientchat https://t.co/lNxNTo5k3v |
| Carly Flumer (she/her) @carlyflumer @marcela @patientchat I understand! I feel that we’re all at our most vulnerable, and talking to new people can be challenging. Sometimes staying close to your comfort zone is what you need. :) #patientchat |
| Alan Brewington @abrewi3010 A2b safe places doesn’t have to mean same silo. What are other chronic patients doing? What are their safe spaces? Place nothing is safer than a strong friendship bond #patientchat |
| Amanda G @LAlupusLady Mental Health matters, do not spiral the #patientchat is still going. (Self talk) |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: What do you find helpful in reducing stress and anxiety during this difficult time? What are some resources? #patientchat https://t.co/lNxNTo5k3v |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @LReedsbooks I've been doing that. But the emotional impact of no-people has been crushing for this extrovert who's spent her life on planes, trains, and automobiles. #patientchat |
| Amanda G @LAlupusLady RT @patientchat: T3: T3: What do you find helpful in reducing stress and anxiety during this difficult time? What are some resources? #patientchat https://t.co/lNxNTo5k3v |
 | Inspire @InspireIsHealth RT @patientchat: T3: T3: What do you find helpful in reducing stress and anxiety during this difficult time? What are some resources? #patientchat https://t.co/lNxNTo5k3v |
| Patient Empowerment Network @power4patients RT @LAlupusLady: Mental Health matters, do not spiral the #patientchat is still going. (Self talk) |
| Amanda G @LAlupusLady T3 I discovered @uclamarc and their guided mindfulness events and information saved me. #patientchat |
| Patient Empowerment Network @power4patients RT @marcela: @patientchat T1b I've discovered or rejoined several online communities and group chats recently but it's kind of awkward at the beginning getting to know people. I feel my safe space is more with close friends and family even if it's just over a phone call #patientchat |
| Carly Flumer (she/her) @carlyflumer T3: Joining online support groups, reading, and listening to podcasts. Sometimes just crying it out. #patientchat |
| Patient Empowerment Network @power4patients RT @LAlupusLady: T3 I discovered @uclamarc and their guided mindfulness events and information saved me. #patientchat |
| Alan Brewington @abrewi3010 A3 picking up take out. It helps local businesses and gives variety in diet. In this time period variety is entertainment #patientchat |
| Amanda G @LAlupusLady T3 I have been writing thank you notes via @OpGratitudeand postcards to my friends as well as supporting @FYAboxby writing notes that say “Younare incredibly loved” which is powerful. #patientchat |
| Amanda G @LAlupusLady RT @patientchat: #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T2b - Go to those places where you're comfortable - whether that's on social media, writing, exercise, reading, TV. It's all about comfort these days. #patientchat #patientadvocacy |
| Alexa Jett 🦋 @ohhiialexa T3: Yoga, meditation (on Zoom or on @InsightTimer ), and diffusing essential oils I like. I’ve listed resources for yoga and meditation in the past, but you can find lots of great essential oil diffuser recipes on Pinterest or Google! #patientchat |
| Alan Brewington @abrewi3010 A3 I’ve spent a huge amount of time exploring my neighborhood for signs of spring. To often we don’t consider our neighborhood as nature when essentially it’s a unique park. #patientchat |
| Carly Flumer (she/her) @carlyflumer @LAlupusLady @uclamarc @SmithCenterDC is focused on #AYA, and they also have meditation classes. I’m taking one with @truenorthtreks next week! #patientchat |
| Alexa Jett 🦋 @ohhiialexa @carlyflumer Crying it out is very underrated. #patientchat https://t.co/XG1dpS7iDd |
| Alan Brewington @abrewi3010 RT @LAlupusLady: Mental Health matters, do not spiral the #patientchat is still going. (Self talk) |
| Patient Chat @patientchat Topic 4a (T4a:) coming up... #patientchat |
| Laurie Reed @LReedptadvocate @MightyCasey I get that. That would be hard. #patientchat |
| Amanda G @LAlupusLady RT @ohhiialexa: @carlyflumer Crying it out is very underrated. #patientchat https://t.co/XG1dpS7iDd |
| Amanda G @LAlupusLady RT @abrewi3010: A3 I’ve spent a huge amount of time exploring my neighborhood for signs of spring. To often we don’t consider our neighborhood as nature when essentially it’s a unique park. #patientchat |
| Patient Empowerment Network @power4patients @patientchat We put together an Activity Guide to help reduce anxiety, stay engaged and even have some fun during this stressful time #COVID19. Please check it out and share it with anyone you think could use it #patientchat https://t.co/773ARhbPXa |
| Patient Chat @patientchat T4a: What are you doing for yourself to provide information/hope/etc. during this time? #patientchat https://t.co/yt5AXQeE7E |
| Alan Brewington @abrewi3010 RT @power4patients: @patientchat We put together an Activity Guide to help reduce anxiety, stay engaged and even have some fun during this stressful time #COVID19. Please check it out and share it with anyone you think could use it #patientchat https://t.co/773ARhbPXa |
| Patient Empowerment Network @power4patients RT @ohhiialexa: T3: T3: Yoga, meditation (on Zoom or on @InsightTimer ), and diffusing essential oils I like. I’ve listed resources for yoga and meditation in the past, but you can find lots of great essential oil diffuser recipes on Pinterest or Google! #patientchat |
| Amanda G @LAlupusLady T3 later today I will be “dancing with @AngiePontani” for her GoGoRobics class #patientchat https://t.co/5hZD9eiH2D |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T3: I've been lucky enough to have PT going on since mid-March, after getting new knee in February. That ends next week, tho, so I'll have to figure out ... something. #patientchat |
| Alexa Jett 🦋 @ohhiialexa @power4patients @patientchat This is an excellent resource! #patientchat |
| Alexa Jett 🦋 @ohhiialexa RT @power4patients: @patientchat We put together an Activity Guide to help reduce anxiety, stay engaged and even have some fun during this stressful time #COVID19. Please check it out and share it with anyone you think could use it #patientchat https://t.co/773ARhbPXa |
| Patient Empowerment Network @power4patients RT @patientchat: T4a: T4a: What are you doing for yourself to provide information/hope/etc. during this time? #patientchat https://t.co/yt5AXQeE7E |
| Patient Empowerment Network @power4patients @ohhiialexa @patientchat Thank you! #patientchat |
 | Elephants and Tea @ElephantsTea RT @ohhiialexa: T2b: T2b: For #AYACancer peeps, check out @ElephantsTea’s COVID-19 well updated resource page. You can also follow @wendyegriffith for updates on @MDAndersonNews’s Cancer180 program (open to all AYA’s now) #patientchat https://t.co/bvAqQQhUvg |
| Marcela Musgrove @marcela @patientchat T4a Working on a passion side project on #neurodiversity and watching a lot of Broadway/music livestreams has been keeping me busy. #patientchat |
| Carly Flumer (she/her) @carlyflumer T4a: Taking time to relax and validate my feelings, taking walks and exploring nature, and writing for @power4patients! #patientchat |
| Alan Brewington @abrewi3010 A4a I recently tried mountain biking after a 15 plus year break. These new bikes make it easy to forget how to ride a mountain bike so it was a rewarding and frustrating experience #patientchat |
| Amanda G @LAlupusLady T4a on Wednesdays I #thinkreadwrite as inspired by the @BTWFoundation team Plus I also support @OperationRRR as a resource team member. #patientchat |
| Amanda G @LAlupusLady RT @patientchat: T4a: T4a: What are you doing for yourself to provide information/hope/etc. during this time? #patientchat https://t.co/yt5AXQeE7E |
| Amanda G @LAlupusLady I am so excited I am typing too fast #patientchat fun. |
| Alexa Jett 🦋 @ohhiialexa T4a: Organizing and having a clean space is good my my mental health, so that’s been a self care tool I’ve utilized lately. Especially since I’m home all the time! #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T3 - Establishing a routine, no matter how small. Exercise. Finding connections with others through writing, social media, and within the home. And allowing myself on some days to recognize that making it just to the end of a day may be enough. #patientchat #patientadvocacy |
| Patient Empowerment Network @power4patients @patientchat Helpful advice, as always from the fabulous @JBBC #patientchat https://t.co/JasqhGWXhi |
| Marcela Musgrove @marcela @patientchat I've found all the meetups going virtual has made me feel less isolated than I would normally feel in this neck of the woods. I've had a chance to connect with people from all over #patientchat |
| Amanda G @LAlupusLady RT @ohhiialexa: T4a: T4a: Organizing and having a clean space is good my my mental health, so that’s been a self care tool I’ve utilized lately. Especially since I’m home all the time! #patientchat |
| Patient Chat @patientchat Topic 4b (T4b:) coming up... #patientchat |
| Amanda G @LAlupusLady RT @power4patients: @patientchat Helpful advice, as always from the fabulous @JBBC #patientchat https://t.co/JasqhGWXhi |
| Patient Empowerment Network @power4patients @LReedsbooks @patientchat Agree that exercise is critical. I've had a hard time motivating myself (not a new issue :) but always feel so much better afterward! #patientchat |
| Amanda G @LAlupusLady RT @power4patients: @LReedsbooks @patientchat Agree that exercise is critical. I've had a hard time motivating myself (not a new issue :) but always feel so much better afterward! #patientchat |
| Patient Chat @patientchat T4b: What are you doing for others to provide information/hope/etc. during this time? #patientchat https://t.co/pk61fGjzSD |
| Carly Flumer (she/her) @carlyflumer @LReedsbooks @patientchat Yes, routine is key! I’m lucky to still be working from home, so having that be a part of routine has helped. I’ve also acquired gym equipment, so no excuses for me! #liftingismydrug #patientchat |
| Amanda G @LAlupusLady RT @patientchat: T4b: T4b: What are you doing for others to provide information/hope/etc. during this time? #patientchat https://t.co/pk61fGjzSD |
| Amanda G @LAlupusLady T4b. I write notes to be included in the boxes for the @FYAbox team - there is enormous warmth that happens when I write “You are incredibly loved.” on brightly colored cards knowing that each one might help someone I’ll never meet. https://t.co/mVoh5gr9a2 #patientchat |
| Amanda G @LAlupusLady T4b Also sending care packages to friends, decorating “meal bags” for @kidsfoodbasket and represent @OperationRRR ‘s Wellness Wednesdays on Instagram. I strive to #ChannelKindness each day in some way. #patientchat |
| Carly Flumer (she/her) @carlyflumer T4b: Providing a listening ear. Sometimes, that’s really all ya need. :) #itsthelittlethings #patientchat |
| Patient Empowerment Network @power4patients @marcela @patientchat Very true! I wish we called it #PhysicalDistancing rather than #SocialDistancing. Being engaged socially, albeit virtually, is more important than ever right now! #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T4b: T4b: What are you doing for others to provide information/hope/etc. during this time? #patientchat https://t.co/pk61fGjzSD |
| Amanda G @LAlupusLady RT @power4patients: @marcela @patientchat Very true! I wish we called it #PhysicalDistancing rather than #SocialDistancing. Being engaged socially, albeit virtually, is more important than ever right now! #patientchat |
| Carly Flumer (she/her) @carlyflumer @LAlupusLady @FYAbox This is wonderful!!! #patientchat |
| Amanda G @LAlupusLady RT @carlyflumer: @LAlupusLady @FYAbox This is wonderful!!! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T4a + T4b: I've just kept doing what I do - reporting what I see, read, learn that impact the communities I intersect with, and battling misinformation on the daily. But my ability to focus is FUBAR since "new normal" is so 180º out of my operating model. #patientchat |
| Alexa Jett 🦋 @ohhiialexa T4b: This is very silly, but I’ve been doing different things with my hair for @ElephantsTea’s Happy Hour. So far I’ve had flowers and channeled Rosie the Riveter. Today’s will be a big surprise. It gets laughs, and that’s medicine, right? 😉 #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T4a - Exercise, yoga, mindfulness. Practicing self compassion - trying not to beat myself up for not being as productive as I think I should be. Enjoying time with my family. #patientchat |
| Amanda G @LAlupusLady @power4patients @marcela @patientchat I learned from the @BTWFoundation team “physically distant, socially connected.” #patientchat |
| Amanda G @LAlupusLady RT @MightyCasey: T4a + T4b: T4a + T4b: I've just kept doing what I do - reporting what I see, read, learn that impact the communities I intersect with, and battling misinformation on the daily. But my ability to focus is FUBAR since "new normal" is so 180º out of my operating model. #patientchat |
| Amanda G @LAlupusLady RT @ohhiialexa: T4b: T4b: This is very silly, but I’ve been doing different things with my hair for @ElephantsTea’s Happy Hour. So far I’ve had flowers and channeled Rosie the Riveter. Today’s will be a big surprise. It gets laughs, and that’s medicine, right? 😉 #patientchat |
| Amanda G @LAlupusLady RT @LReedsbooks: @patientchat T4a - Exercise, yoga, mindfulness. Practicing self compassion - trying not to beat myself up for not being as productive as I think I should be. Enjoying time with my family. #patientchat |
 | Angie Pontani @AngiePontani RT @LAlupusLady: T3 later today I will be “dancing with @AngiePontani” for her GoGoRobics class #patientchat https://t.co/5hZD9eiH2D |
| Alan Brewington @abrewi3010 A4b first, trying to be a better listener. We need to be active listeners. Second, trying to redefine activity/fun. IE exploring ones own neighborhood vs hiking in the mountains #patientchat |
| Patient Empowerment Network @power4patients @patientchat Thanks for the great feedback on the #PENPowered Activity Guide! Pleased to report that we're going to create 3 more focusing on telemedicine, building resiliency, and how to apply all we've learned during this crisis to our onward journey. #patientchat https://t.co/773ARhbPXa |
| Patient Chat @patientchat Last topic (T5:) coming up... #patientchat |
| Patient Empowerment Network @power4patients RT @abrewi3010: A4b first, trying to be a better listener. We need to be active listeners. Second, trying to redefine activity/fun. IE exploring ones own neighborhood vs hiking in the mountains #patientchat |
| Patient Empowerment Network @power4patients RT @LAlupusLady: @power4patients @marcela @patientchat I learned from the @BTWFoundation team “physically distant, socially connected.” #patientchat |
| Amanda G @LAlupusLady RT @power4patients: @patientchat Thanks for the great feedback on the #PENPowered Activity Guide! Pleased to report that we're going to create 3 more focusing on telemedicine, building resiliency, and how to apply all we've learned during this crisis to our onward journey. #patientchat https://t.co/773ARhbPXa |
| Patient Chat @patientchat T5: How has #COVID19 changed your plans to raise awareness and advocate? #patientchat https://t.co/tTwLC7mkFl |
| Alan Brewington @abrewi3010 RT @power4patients: @patientchat Thanks for the great feedback on the #PENPowered Activity Guide! Pleased to report that we're going to create 3 more focusing on telemedicine, building resiliency, and how to apply all we've learned during this crisis to our onward journey. #patientchat https://t.co/773ARhbPXa |
| Amanda G @LAlupusLady RT @patientchat: T5: T5: How has #COVID19 changed your plans to raise awareness and advocate? #patientchat https://t.co/tTwLC7mkFl |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @power4patients: @patientchat Thanks for the great feedback on the #PENPowered Activity Guide! Pleased to report that we're going to create 3 more focusing on telemedicine, building resiliency, and how to apply all we've learned during this crisis to our onward journey. #patientchat https://t.co/773ARhbPXa |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: How has #COVID19 changed your plans to raise awareness and advocate? #patientchat https://t.co/tTwLC7mkFl |
| Amanda G @LAlupusLady T5 #COVID19 postponed the Lupus Advocacy Day this Spring, but our community came together to “virtually advocate” Living with lupus there is always something that is unexpected that arises. #patientchat |
| Alexa Jett 🦋 @ohhiialexa @LReedsbooks @patientchat I can totally relate to this, and I know others can too. I absolutely LOVE this Letters to Jack post by @dearjackhq’s own Kayla talking about the productivity guilt during isolation. #patientchat https://t.co/WHrwYd2yxI |
| Amanda G @LAlupusLady T5 The pandemic has helped me get creative for May. I celebrate Lupus, Fibromyalgia, Arthritis and Mental Health “awareness” Month so planning “virtual” activities has been fun, interesting and exciting. #patientchat https://t.co/ESCTXEDNqh |
 | Rev. Dr. Stacey Simpson Duke @revdrduke @patientchat T1: I felt anxious about the possibility that, if I were to get the virus, I would have a higher chance of becoming severely ill, and that, since I have cancer, I might be denied life-saving treatment if care were to be rationed. #patientchat |
| Amanda G @LAlupusLady RT @ohhiialexa: @LReedsbooks @patientchat I can totally relate to this, and I know others can too. I absolutely LOVE this Letters to Jack post by @dearjackhq’s own Kayla talking about the productivity guilt during isolation. #patientchat https://t.co/WHrwYd2yxI |
| Alan Brewington @abrewi3010 A5 I’m still trying to figure out this new normal. For example, I had a cardio ablation surgery follow up over the phone. How can you treat a heart condition over the phone? Still unsure of this telemedicine idea. #patientchat |
| Patient Empowerment Network @power4patients @patientchat Fortunately, we have always been and continue to be a virtual organization. This means our resources and services are available to the people who need them without interruption 24/7/365 #patientchat Join us at https://t.co/uKLR16CptZ |
| Patient Empowerment Network @power4patients RT @revdrduke: @patientchat T1: @patientchat T1: I felt anxious about the possibility that, if I were to get the virus, I would have a higher chance of becoming severely ill, and that, since I have cancer, I might be denied life-saving treatment if care were to be rationed. #patientchat |
| Rev. Dr. Stacey Simpson Duke @revdrduke @patientchat T1: I also felt angry at some of the language around the virus - leaders saying things like the "only" people at risk of serious illness were the elderly and those with underlying health condition. It sounded like we are expendable. #patientchat |
| Amanda G @LAlupusLady Many #lupus patients had concerns and experiences with the rationing of plaquenil... #patientchat |
| Amanda G @LAlupusLady RT @power4patients: @patientchat Fortunately, we have always been and continue to be a virtual organization. This means our resources and services are available to the people who need them without interruption 24/7/365 #patientchat Join us at https://t.co/uKLR16CptZ |
| Carly Flumer (she/her) @carlyflumer @abrewi3010 I find it very hard for some specialties. I have a telehealth appointment with a dermatologist, and I honestly don’t know how it’s going to go. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T4b - Checking in with others that I would not normally consider. Finding opportunities to connect in new ways. #patientchat |
| Patient Chat @patientchat Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T5: Still working on getting my podcast @hilarious_is out regularly (altho this week was #epicfail on that due to focus/flailing issue aformentioned). Still part of @BeLikeLight collective working on #dataprivacy + #datarights. One day at a time, one step at a time. #patientchat |
| Amanda G @LAlupusLady Today to celebrate the first day of May... #LupusAwareness Month I will be taking over the @wegohealth ‘s Instagram account... After #patientchat https://t.co/Caca2YrOW3 |
| Alexa Jett 🦋 @ohhiialexa T5: Advocacy must continue, but adapt. I am optimistic with conferences moving online that the community will stay strong and connected. What’s left to figure out how to reach the public at large in these times. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Amanda G @LAlupusLady RT @ohhiialexa: T5: T5: Advocacy must continue, but adapt. I am optimistic with conferences moving online that the community will stay strong and connected. What’s left to figure out how to reach the public at large in these times. #patientchat |
| Alan Brewington @abrewi3010 @carlyflumer There is an adjustment that I think no one thought about. Telehealth was supposed to save the day, I’m just not sure what to think about it. Good luck with your appointment! #patientchat |
| Rev. Dr. Stacey Simpson Duke @revdrduke @patientchat T2: My "4 T's" - talking (with my husband), texting (with my niece), telehealth (with my therapist), and ... Twitter! #patientchat |
| Amanda G @LAlupusLady RT @MightyCasey: T5: T5: Still working on getting my podcast @hilarious_is out regularly (altho this week was #epicfail on that due to focus/flailing issue aformentioned). Still part of @BeLikeLight collective working on #dataprivacy + #datarights. One day at a time, one step at a time. #patientchat |
| Amanda G @LAlupusLady RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Alexa Jett 🦋 @ohhiialexa @revdrduke @patientchat This was very upsetting and disturbing to me as well! #patientchat |
| Carly Flumer (she/her) @carlyflumer @abrewi3010 Same to you!! #patientchat |
| Amanda G @LAlupusLady CT I appreciate @power4patients and @patientchat for inviting me to this #patientchat it means so much to connect with each other. Now more than ever. 💖 |
| Amanda G @LAlupusLady Thank you @patientchat and @power4patients for allowing me to share during #patientchat today. https://t.co/ecfiwqOPLQ |
| Laurie Reed @LReedptadvocate @patientchat T5 - In person gatherings/speaking engagements are out - social media is in. #patientchat |
| Alan Brewington @abrewi3010 CT May is #ArthritisAwareness month. Please take an extra moment to check on your friends and family with #rheum #lupus #StillsDisease or any one of the 180 types of arthritis’s known. #patientchat |
| Alexa Jett 🦋 @ohhiialexa CT: I am glad #patientchat cannot, and will not be canceled due to physical distancing. Gathering with each of you every other week is definitely “community”! We will get through this together. |
| Patient Chat @patientchat RT @ohhiialexa: CT: CT: I am glad #patientchat cannot, and will not be canceled due to physical distancing. Gathering with each of you every other week is definitely “community”! We will get through this together. |
| Patient Empowerment Network @power4patients RT @ohhiialexa: CT: CT: I am glad #patientchat cannot, and will not be canceled due to physical distancing. Gathering with each of you every other week is definitely “community”! We will get through this together. |
| Amanda G @LAlupusLady RT @abrewi3010: CT May is #ArthritisAwareness month. Please take an extra moment to check on your friends and family with #rheum #lupus #StillsDisease or any one of the 180 types of arthritis’s known. #patientchat |
| Patient Empowerment Network @power4patients RT @ohhiialexa: T5: T5: Advocacy must continue, but adapt. I am optimistic with conferences moving online that the community will stay strong and connected. What’s left to figure out how to reach the public at large in these times. #patientchat |
| Patient Empowerment Network @power4patients RT @abrewi3010: @carlyflumer There is an adjustment that I think no one thought about. Telehealth was supposed to save the day, I’m just not sure what to think about it. Good luck with your appointment! #patientchat |
 | The Myositis Association @TheMyositisAssc @patientchat A5: @TheMyositisAssc has a #COVID19 page for patients https://t.co/Q7kJT1ba9d #patientchat #myositis https://t.co/ycCrvXIqg2 |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Rev. Dr. Stacey Simpson Duke @revdrduke @patientchat T2b: I'm guided by the motto "To have a friend is to be a friend" (Emerson). I try to be that safe space for others - listening, open-minded, nonjudgmental, authentic, unafraid - and, where it is reciprocated, I lean in. #patientchat |
| Patient Empowerment Network @power4patients RT @TheMyositisAssc: @patientchat A5: @patientchat A5: @TheMyositisAssc has a #COVID19 page for patients https://t.co/Q7kJT1ba9d #patientchat #myositis https://t.co/ycCrvXIqg2 |
| Patient Empowerment Network @power4patients RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Patient Chat @patientchat Thanks so much @LAlupusLady for sharing your insights and being our special guest for today’s #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour |
| Laurie Reed @LReedptadvocate @ohhiialexa @patientchat @dearjackhq Thank you for sharing -- this is wonderful! Here's another article I found very helpful. #patientchat https://t.co/9aZH8PgOrV |
| Amanda G @LAlupusLady RT @patientchat: Thanks so much @LAlupusLady for sharing your insights and being our special guest for today’s #patientchat |
| Patient Chat @patientchat Join us on 5/15 for a very special Virtual Empowered #patientchat. This will be a 45-minute moderated chat with passionate patient advocates and care partners. Join us on ZOOM, Facebook Live or watch the highlights from the live discussion on Twitter! https://t.co/LFPadddlkF https://t.co/wDUoz8syD2 |
| Alexa Jett 🦋 @ohhiialexa @LReedsbooks @patientchat @dearjackhq Thank you, I’ll read this one as well! #patientchat |
| Rev. Dr. Stacey Simpson Duke @revdrduke @patientchat T3: A daily meditation practice. Daily time outside (I haven't done well with that one this week). Spending time each day in a creative pursuit I enjoy. Intentionally letting go of certain expectations (of myself, of others, of life). #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey CT: I'll just keep on keeping on. Hard to know how to shift business development when my model has long been "turn up in rooms to ask hard questions" - easier to ignore questions posed virtually ... So making a living is once again back to Square One. #patientchat |
| Alexa Jett 🦋 @ohhiialexa I am *BEYOND* excited to be a panelist for this! @yourgpsdoc/@NRochesterMD is going to be an amazing moderator. I look forward to seeing you all in 2 weeks! #patientchat |
| Laurie Reed @LReedptadvocate @patientchat CT - Thanks @patientchat for a great discussion! #patientchat |
| Diverse Health Hub @DHealthhub RT @patientchat: Join us on 5/15 for a very special Virtual Empowered #patientchat. This will be a 45-minute moderated chat with passionate patient advocates and care partners. Join us on ZOOM, Facebook Live or watch the highlights from the live discussion on Twitter! https://t.co/LFPadddlkF https://t.co/wDUoz8syD2 |
| Rev. Dr. Stacey Simpson Duke @revdrduke @patientchat T4a: For info, I read reliable sources on public health, including following leaders in the field on Twitter. For hope, I draw on spiritual resources: prayer & meditation practices, faith community, spiritual reading, and creative outlets that ground me. #patientchat |
| Rev. Dr. Stacey Simpson Duke @revdrduke @patientchat T4b: As a religious leader, I use all the means of my vocation - sermons, worship leadership, social media, pastoral writing, one-on-one conversation, etc. - to communicate both information and hope. #patientchat |
| Patient Chat @patientchat RT @ohhiialexa: I am *BEYOND* excited to be a panelist for this! @yourgpsdoc/@NRochesterMD is going to be an amazing moderator. I look forward to seeing you all in 2 weeks! #patientchat |
| Rev. Dr. Stacey Simpson Duke @revdrduke @patientchat T5: Before #Covid19, my focus re: awareness/advocacy was specific to my own illness. Now it seems everyone is dealing with the same sense of trauma & fragility I've been living with. The scope of my mission is broadened. #patientchat |
#patientchat content from Twitter.