#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat The bulk of today’s conversation will take place online here https://t.co/xaGRjnQ1Hl, but we will have some topic questions here for you as well #patientchat |
| 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 I’m Kara from @power4patients and I’m excited to hear from @yourgpsdoc, @aprilm2011, @Memej99, Jeff and Summer today! Tune in now: https://t.co/xaGRjnQ1Hl #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
 | Diverse Health Hub @DHealthhub Have you joined this #patientchat via @power4patients? Register now!! |
 | Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph Hi everyone! I'm Christie - a public health consultant and founder of https://t.co/vm0fw4fZSv! I am from NYS, about an hour north of NYC. #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 |
 | Alexa Jett 🦋 @ohhiialexa Hello #patientchat! Alexa here (and watching on Zoom!) representing the AYA cancer and thyroid cancer communities as always ❤️ |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/XO3X3JyAcV #patientchat |
 | Carly Flumer (she/her) @carlyflumer I’m Carly, a #thyca survivor and #AYA advocate. Happy to be here! 🦋#PatientChat |
| Alexa Jett 🦋 @ohhiialexa @patientchat @power4patients @yourgpsdoc @aprilm2011 @Memej99 I’m super excited too! #patientchat |
 | Alan Brewington @abrewi3010 Alan here. Recovering from yesterday’s trigger point injections. Very tired and brain foggy. #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is How to Apply Your Empowerment Skills to Your Health Journey https://t.co/ok4aRaFxEZ |
 | Laurie Reed @LReedptadvocate @patientchat Hello! Laurie, patient advocate, tweeting from Oregon - we got rain last night which has helped to clear the air, not sure it did much for the fires though. Looking forward to today's discussion. #patientchat |
| Patient Chat @patientchat You can watch online here:https://t.co/xaGRjnQ1Hl or follow along on here with the hashtag #patientchat |
 | Adam Johnson - DadVocate @RareDiseaseDad @ohhiialexa @patientchat @power4patients @yourgpsdoc @aprilm2011 @Memej99 Same! Glad to be here. #PatientChat |
| 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 |
| Alexa Jett 🦋 @ohhiialexa @LReedsbooks @patientchat I’m so glad to hear that, Laurie! I’m hoping things continue to improve. #patientchat |
| Patient Chat @patientchat T1: What are some frustrations you are dealing with right now? Has anyone managed to transform their frustration into productivity? #patientchat https://t.co/9LVkzeZqc1 |
| Carly Flumer (she/her) @carlyflumer T1: Being *very* busy at work and in all my #sidehustles to the point of being so stressed and forgetting to take my meds. Not good as a #rare and #chronic patient. #PatientChat |
| Alexa Jett 🦋 @ohhiialexa T1: I’m frustrated that people are acting like the pandemic is over just because they are over it! #patientchat |
| Alan Brewington @abrewi3010 A1 physical and mental tiredness. 2019 was a rough year medically, 2018 dad died and had medical issues. I just want a break, I need a vacation from reality. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat Hi everyone. This is Adam. Excited to join #PatientChat, listen, share, & learn. I’m a parent who was diagnosed as an adult, & it’s been a tough road. I’ve recently started to own my #RareDisease journey more actively, hoping to connect with & support others along the way. ⬇️ |
| Alexa Jett 🦋 @ohhiialexa @carlyflumer Girrrrrrlll!! SELF CARE AND PUTTING THE MASK ON YOURSELF!! #patientchat https://t.co/SsPwLfN1WQ |
| Laurie Reed @LReedptadvocate @patientchat T1: - Access to care. We've recently moved. In our new location there are two medical systems that have tied up all the doctors. In one system - you cannot choose your own doctor. In the other, waits are very long. Nine mos for my first appt. - informational only. #patientchat |
 | Heather 🇺🇸 @ZHeatherChamp Hi #PatientChat! I lost time of when your chats are! I’m Heather, person living w 2 rare brain tumors and #RareDisease Cowden Syndrome. #btsm #pten |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @patientchat A1: It can be challenging to be productive. I create a schedule and stick to it. Also, I am frustrated that people won't wear a mask properly. Cover your nose, people! ;) #PatientChat |
| Alan Brewington @abrewi3010 Yesss! I miss going outside with actual people on life’s adventures #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @carlyflumer Can you set an alarm to remind you, Carly? It is hard to keep it all straight! #patientchat |
| Patient Chat @patientchat @ZHeatherChamp Hi Heather! We're here bi-weekly on Friday's at 1pm ET | 10am PT #patientchat |
| Alexa Jett 🦋 @ohhiialexa @RareDiseaseDad @patientchat I love “DadVocate”! #patientchat |
| Patient Chat @patientchat T2: Are there any empowerment tools everyone uses on a daily basis? #patientchat https://t.co/YjcyOuiewL |
| Laurie Reed @LReedptadvocate @abrewi3010 Stop the carousel - I want to get off kind of feeling. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp A1: Honestly? Not looking for arguments or debates but I’m frustrated w masks. I need to breathe I need oxygen! #PatientChat |
| Alexa Jett 🦋 @ohhiialexa @cvhconsulting @patientchat It’s really not hard to wear a mask, people! 😭 #patientchat |
| Heather 🇺🇸 @ZHeatherChamp A2: I just got a @passion_planner and while I’m green I def see the empowerment purpose it has. #PatientChat #pashfam |
| Alan Brewington @abrewi3010 @LReedsbooks Yesss, this ride is boring! Need to try a new one. #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @LReedsbooks @patientchat I hope you don't mind my response in the form of a GIF. #patientchat https://t.co/NogHKSBM9e |
| Carly Flumer (she/her) @carlyflumer @cvhconsulting Oh girl, I have an app that dings at me to take meds, and yet right now, I still turn it off like an alarm clock. #patientchat |
| Patient Chat @patientchat T3: What are examples of empowerment tools you personally use in your current health journey? #patientchat https://t.co/fjFzpSe46R |
| Heather 🇺🇸 @ZHeatherChamp @ohhiialexa @cvhconsulting @patientchat But with someone living w 2 brain tumors the masks have IMO a definite negative effect. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @rarelikeher @GlobalGenes I bet this is such a challenge, Taylor. I relate in the sense that I’m hoping to meet my new found rare disease family (& hopefully get adopted!?!). I feel like I’m connecting with folks virtually, yet I’m also such a people person & want to meet in person. Someday! #PatientChat |
| Alexa Jett 🦋 @ohhiialexa T2: Like @aprilm2011 and Summer Golden on the Zoom call, humor and yoga #patientchat |
| Diverse Health Hub @DHealthhub RT @ohhiialexa: T2: T2: Like @aprilm2011 and Summer Golden on the Zoom call, humor and yoga #patientchat |
| Carly Flumer (she/her) @carlyflumer @patientchat T2: If by empowerment tools, you mean many lists and 2 different calendar systems, then yes. 😅 #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @cvhconsulting @carlyflumer I have 9 alarms on my phone to help me - and I def need more. #patientchat |
| Alan Brewington @abrewi3010 A2 to be honest, I have no clue to what empowerment tools even means. Personally I’ve gone back to a more serious study of Buddhism. Due to my #Caregiver functions when dad died, I’m trying to develop that voice more. I have things to say. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp RT @patientchat: Join us on September 18th for the next Virtual Empowered #patientchat “How to Apply Your Empowerment Skills to Your Health Journey”. Register here: https://t.co/LyrsfN3Zwk https://t.co/BNy8AnYBPJ |
| Laurie Reed @LReedptadvocate @patientchat T2: Self-compassion. All in an effort to not beat myself up for things not going the way I expect, or want them to go. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @patientchat A3: Kind of repeated but alarms really help me to remember and know what’s coming next. Life Is in session. #patientchat |
| Patient Chat @patientchat @scrufton73 We'll miss you Carole! Have a nice weekend and keep an eye out for the recap next week :) #patientchat |
| Alan Brewington @abrewi3010 A3 it’s my quality of life at stake, the only way my team can help is if I use my voice to tell my entire story. That includes the positive and negative. #patientchat |
| Patient Chat @patientchat @LizzieMcFarlane Welcome Lizzie! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @ohhiialexa @cvhconsulting @patientchat I’m a Friends fan and wonder how Chandler would empahsize this very point! 😂 #PatientChat |
| Alexa Jett 🦋 @ohhiialexa T3: Calendars, apps (meditation, fitness, connection.), and YouTube for lots of at home workouts! #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T3: Oops - answered T3 in T2. Here's another one - laughter. Finding the humor is very helpful to finding a way forward. #patientchat |
| Patient Chat @patientchat T4: What is the biggest hurdle you’ve had to overcome in your health journey and how did you approach/overcome it? #patientchat https://t.co/zjW5XnaxEK |
| Carly Flumer (she/her) @carlyflumer @patientchat Accepting me as I am and being okay with it. #patientchat |
| Alexa Jett 🦋 @ohhiialexa T4: I’m still overcoming it! Thyroid cancer has a huge stigma of being a “good” or “easy” cancer, which means we get left out at the table or resources. I overcome it by, showing up, being consistent, and loud! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T1: Many frustrations. My #RareDisease journey really started in March 2019 & I already felt isolated, alone, & quarantined from my previous life. The pandemic added to & amplified this. A positive...I finally made my website & blog. Win! #PatientChat https://t.co/U0Bdme4gsA |
| Alan Brewington @abrewi3010 A4 probably it’s my concept of problem solving. To often yesterday’s problem solving skills no longer work. Instead of morning that, which does nothing, I had to become flexible & creative. It’s fun to tackle new issues, adventures. #patientchat |
 | Bingle @TheBingle The frustration of misdiagnosis or holding back/changing truths & info is pathetic.Two Professors are connected to BS. At least one more is surely the bridge. Patients need alternatives. |
| Patient Chat @patientchat T6: What are your go-to trusted resources and how did you find them? #patientchat https://t.co/X6dVWQnYEW |
| Carly Flumer (she/her) @carlyflumer @ohhiialexa 🦋🦋🦋 #patientchat https://t.co/IIgRGfLUWE |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @patientchat T4: Persistence. For so many in our broken medical system, it can be exhausting to keep pushing to find a doctor who will listen or to keep up with care and management. Tips to overcoming hurdles: take breaks, ask for referrals, keep a journal, celebrate the wins! #patientchat |
| Carly Flumer (she/her) @carlyflumer @patientchat My doctor, patient portals, and support groups. Google searches and tweet chats are definitely helpful! #patientchat |
| Alexa Jett 🦋 @ohhiialexa @carlyflumer We all do it together! #patientchat https://t.co/vcxvJ589kd |
| Heather 🇺🇸 @ZHeatherChamp A4: I’m still working on this: I’m so frustrated with ADULTS seemingly being left out of #RareDisease convos. I was dx as adult and am forgotten! #PatientChat #pten |
| Bingle @TheBingle Frustration of misdiagnosis or holding back/changing truths & info is pathetic.Two Professors are connected to BS. At least one more is surely the bridge. Patients need alternatives. #patientchat |
| Diverse Health Hub @DHealthhub RT @cvhconsulting: @patientchat T4: @patientchat T4: Persistence. For so many in our broken medical system, it can be exhausting to keep pushing to find a doctor who will listen or to keep up with care and management. Tips to overcoming hurdles: take breaks, ask for referrals, keep a journal, celebrate the wins! #patientchat |
| Diverse Health Hub @DHealthhub RT @ohhiialexa: T4: T4: I’m still overcoming it! Thyroid cancer has a huge stigma of being a “good” or “easy” cancer, which means we get left out at the table or resources. I overcome it by, showing up, being consistent, and loud! #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T4: Still ongoing - don't think it's overcome. And that's getting doctors to spend the time troubleshooting rather than trying to move quickly to answers. I've found some great doctors but, time is always at a premium. #patientchat |
| Alan Brewington @abrewi3010 A6 twitter chats like #patientchat, #Medx Conference, or any where else were I could learn about different patient stories. Don’t always have to reinvent the wheel, just need to find the wheel already designed by others |
| Adam Johnson - DadVocate @RareDiseaseDad @ZHeatherChamp @patientchat I need to do this more! Seems so simple, but I don’t do it enough (outside of appointments...if I didn’t do it for those, I swear I’d never make it, Telehealth or in person! 😂). Also, I love “life is in session!” #PatientChat |
| Heather 🇺🇸 @ZHeatherChamp A6: I pretty much only trust those who have experienced what I have: brain tumors, #thyca, Cowden Syndrome etc. V few ppl think of us Zebras. #btsm #pten #patientchat |
 | Lillian Lake - Host of #SoulNestingChat @llake RT @cvhconsulting: @patientchat T4: @patientchat T4: Persistence. For so many in our broken medical system, it can be exhausting to keep pushing to find a doctor who will listen or to keep up with care and management. Tips to overcoming hurdles: take breaks, ask for referrals, keep a journal, celebrate the wins! #patientchat |
| Alexa Jett 🦋 @ohhiialexa T6: Besides the traditional routes of information, I like having so many doctors accessible on Twitter! Like @NRochesterMD, @marklewismd, @BZavaletaMD, and others. #patientchat |
 | Jerry Chen @mrtallerjerry RT @abrewi3010: A6 twitter chats like #patientchat, #Medx Conference, or any where else were I could learn about different patient stories. Don’t always have to reinvent the wheel, just need to find the wheel already designed by others |
| Lillian Lake - Host of #SoulNestingChat @llake @carlyflumer @patientchat That's a big one and fundamental to any prospect of recovery. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T6: Other patients/patient advocates on twitter and facebook. #patientchat |
| Patient Chat @patientchat What would like people to know about your patient experience? #patientchat |
 | Beverly A. Zavaleta MD @BZavaletaMD I’m glad to be of service! @ohhiialexa #survonc #cancersurvivor |
| Beverly A. Zavaleta MD @BZavaletaMD RT @ohhiialexa: T6: T6: Besides the traditional routes of information, I like having so many doctors accessible on Twitter! Like @NRochesterMD, @marklewismd, @BZavaletaMD, and others. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @carlyflumer @patientchat T4: I hear you, Carly! It was such a hurdle for me to accept something was wrong rather than ignoring/pushing it aside, then fighting through the diagnostic journey (including some telling me it was all in my head), & now accepting. Honestly, I’m still working on it. #PatientChat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T4 Understanding that overwhelmingly doctors either don't care, or understand the importance of caring. Also a provider needs to know that they can say "I don't know" as an honest response. And that no one can make my health a priority more than I can. #patientchat |
 | Christina Lizaso @btrfly12 RT @RareDiseaseDad: @carlyflumer @patientchat T4: @carlyflumer @patientchat T4: I hear you, Carly! It was such a hurdle for me to accept something was wrong rather than ignoring/pushing it aside, then fighting through the diagnostic journey (including some telling me it was all in my head), & now accepting. Honestly, I’m still working on it. #PatientChat |
| Christina Lizaso @btrfly12 RT @abrewi3010: A6 twitter chats like #patientchat, #Medx Conference, or any where else were I could learn about different patient stories. Don’t always have to reinvent the wheel, just need to find the wheel already designed by others |
| Christina Lizaso @btrfly12 RT @LReedsbooks: @patientchat T4: @patientchat T4: Still ongoing - don't think it's overcome. And that's getting doctors to spend the time troubleshooting rather than trying to move quickly to answers. I've found some great doctors but, time is always at a premium. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @RareDiseaseDad @carlyflumer @patientchat I love it when people can connect like this. #patientchat |
| Christina Lizaso @btrfly12 RT @cvhconsulting: @patientchat T4: @patientchat T4: Persistence. For so many in our broken medical system, it can be exhausting to keep pushing to find a doctor who will listen or to keep up with care and management. Tips to overcoming hurdles: take breaks, ask for referrals, keep a journal, celebrate the wins! #patientchat |
 | Marni Cartelli @Purrfectly_Rare A.4 #patientchat I'm in the midst of handling my biggest hurdle. It is learning the balance between what is a true limitation caused by my #RareDisease vs what I have imposed on myself out of fear or expectation |
| Lillian Lake - Host of #SoulNestingChat @llake RT @abrewi3010: A6 twitter chats like #patientchat, #Medx Conference, or any where else were I could learn about different patient stories. Don’t always have to reinvent the wheel, just need to find the wheel already designed by others |
| Christina Lizaso @btrfly12 RT @ohhiialexa: T4: T4: I’m still overcoming it! Thyroid cancer has a huge stigma of being a “good” or “easy” cancer, which means we get left out at the table or resources. I overcome it by, showing up, being consistent, and loud! #patientchat |
| Alan Brewington @abrewi3010 If earned the right to bad days, weeks, and even months but that doesn’t mean I’m patient as cultural convention defines it. I still grab my camera & head to mountains to hike, probably can still out ski you, & will fight for my quality of life. #patientchat |
| Alexa Jett 🦋 @ohhiialexa We need grace, love, and understanding! #patientchat |
| Alan Brewington @abrewi3010 RT @Purrfectly_Rare: A.4 #patientchat I'm in the midst of handling my biggest hurdle. It is learning the balance between what is a true limitation caused by my #RareDisease vs what I have imposed on myself out of fear or expectation |
| 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 |
| Laurie Reed @LReedptadvocate @patientchat People experiencing illness need to know they are not alone. Illness is a singular experience, however, there is power in knowing that others are also having, not the same, but similar experiences. #patientchat |
| Carly Flumer (she/her) @carlyflumer @ohhiialexa And no cancer is “good!” (Saying it for people in the wayyyyy back) 🦋🦋 #patientchat |
| Bingle @TheBingle When Drs. put down patients right away because tests reveal nothing wrong, the Drs. always believe tests over patients. Henceforth, those doctors may have things totally wrong.Patient finally goes on own! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T1 My frustration is presently as caregiver. Not being allowed to be w/my spouse at his appointments is unacceptable & akin to malpractice. The caregiver is the link between the caree and the provider. The buck often stops with us. No. There has been no movement. #patientchat |
 | John Novack @J2Novack RT @patientchat: T4: T4: What is the biggest hurdle you’ve had to overcome in your health journey and how did you approach/overcome it? #patientchat https://t.co/zjW5XnaxEK |
 | Claudia Casciato @casciatowriting RT @patientchat: T4: T4: What is the biggest hurdle you’ve had to overcome in your health journey and how did you approach/overcome it? #patientchat https://t.co/zjW5XnaxEK |
| Alan Brewington @abrewi3010 I would add we need grace, love, and understanding just like every other human. We are not different, our bodies just dont listen to our quality of life expectations enough. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat CT: Reminded of what a great community this is - great to see/hear from everyone! #patientchat |
| Patient Chat @patientchat @LReedsbooks Thanks for joining today @LReedsbooks! #patientchat |
| Christina Lizaso @btrfly12 RT @LReedsbooks: @patientchat T1: @patientchat T1: - Access to care. We've recently moved. In our new location there are two medical systems that have tied up all the doctors. In one system - you cannot choose your own doctor. In the other, waits are very long. Nine mos for my first appt. - informational only. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @Purrfectly_Rare: A.4 #patientchat I'm in the midst of handling my biggest hurdle. It is learning the balance between what is a true limitation caused by my #RareDisease vs what I have imposed on myself out of fear or expectation |
| Carly Flumer (she/her) @carlyflumer @llake @patientchat And caregivers are SUCH an important aspect of going through care, yet so under-appreciated. I see you and am making room for all of the emotions you are feeling right now. ❤️ #patientchat |
| Laurie Reed @LReedptadvocate @patientchat Great topic and conversation - thanks for organizing. #patientchat @patientchat @power4patients |
| Alexa Jett 🦋 @ohhiialexa CT: I’m so grateful to the panelists on the zoom #patientchat for their honesty and willing to share. I loved hearing @aprilm2011, @Memej99, and Summer’s patient stories! |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Patient Chat @patientchat Thanks so much @yourgpsdoc, @aprilm2011, @Memej99, Jeff, and Summer for being today’s virtual #patientchat guests and sharing your insights! We’ll be providing a recap of this program to include some highlights from the discussion, stay tuned. |
| Patient Chat @patientchat We’ll be back to the original format on October 2nd for the next #patientchat. See you there! https://t.co/lxEB7UMHYi |
| Alan Brewington @abrewi3010 CT as patients we have earned the right to bad days but can still have a great life! Despite everything, we completed yesterday which means we have a stronger life skill set than we realize which can provide a great life. #patientchat |
| Bingle @TheBingle 2-2 Placebo effect is real/or helps IMHO.Envelope viruses like HIV/others can be destroyed which reduces virus load& increases immunity.COVID-19 may be kept at bay IMHO.Drs. Birx,Fauci,Redfield & Collins can confirm they knew this or did not know #patientchat |
| Patient Chat @patientchat Keep the conversation going between chats with hashtag #patientchat |
| Alexa Jett 🦋 @ohhiialexa @abrewi3010 And unfortunately, sometimes people don’t give them at all, patients or not! #patientchat |
| Alexa Jett 🦋 @ohhiialexa RT @carlyflumer: @llake @patientchat And caregivers are SUCH an important aspect of going through care, yet so under-appreciated. I see you and am making room for all of the emotions you are feeling right now. ❤️ #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @abrewi3010 Great points, Alan! We can (and should if & when we are ready) tell our stories while sharing both the positive and negative. There’s plenty of both! #PatientChat |
| Claudia Casciato @casciatowriting RT @Purrfectly_Rare: A.4 #patientchat I'm in the midst of handling my biggest hurdle. It is learning the balance between what is a true limitation caused by my #RareDisease vs what I have imposed on myself out of fear or expectation |
| Lillian Lake - Host of #SoulNestingChat @llake @carlyflumer @patientchat Awww, you brought tears to my eyes. My spouse says his appointments are like "1/2 appointments" without me there. I appreciate your kindness. #patientchat |
| Alan Brewington @abrewi3010 @ohhiialexa I know and agree! Despite everything I’m trying to remain optimistic in believing we can change that...at least I hope we can. #patientchat |
| Bingle @TheBingle 1-2 What if the Placebo Effect Isn’t a Trick? https://t.co/8QYawxpu8P No trick!Picture seen (lozenges)a real treatment.Dr. Fauci can attest lozenges combine w/powerful substances in saliva to create powerful weapon against bacteria&viruses #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @RareDiseaseDad: @ZHeatherChamp @patientchat I need to do this more! Seems so simple, but I don’t do it enough (outside of appointments...if I didn’t do it for those, I swear I’d never make it, Telehealth or in person! 😂). Also, I love “life is in session!” #PatientChat |
| Lillian Lake - Host of #SoulNestingChat @llake @LReedsbooks @patientchat Yes! Yes! Yes! #patientchat https://t.co/dlXNPUHWV7 |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph RT @carlyflumer: @llake @patientchat And caregivers are SUCH an important aspect of going through care, yet so under-appreciated. I see you and am making room for all of the emotions you are feeling right now. ❤️ #patientchat |
| Alan Brewington @abrewi3010 @RareDiseaseDad To often healthcare only hears the negative I believe. There is much to learn in the positive just by starting with the question why? #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @patientchat T3 My exercise routine I consider to be a tool. Compassionate nutrition. And the power of saying "no". #patientchat |
| Alexa Jett 🦋 @ohhiialexa @abrewi3010 I still have hope! 😊 #patientchat |
 | Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: Thanks so much @yourgpsdoc, @aprilm2011, @Memej99, Jeff, and Summer for being today’s virtual #patientchat guests and sharing your insights! We’ll be providing a recap of this program to include some highlights from the discussion, stay tuned. |
| Lillian Lake - Host of #SoulNestingChat @llake RT @carlyflumer: @llake @patientchat And caregivers are SUCH an important aspect of going through care, yet so under-appreciated. I see you and am making room for all of the emotions you are feeling right now. ❤️ #patientchat |
| Christina Lizaso @btrfly12 RT @llake: @patientchat T3 My exercise routine I consider to be a tool. Compassionate nutrition. And the power of saying "no". #patientchat |
 | Monique C Gore-Massy (she) #ACR22 @GoldenMoe 🌬️@yourgpsdoc closed out w simple sage advice "Your empowerment matters." #patientchat If you're a #patient #patienleader #patientadvocate #carepartner pls #rt, remind yourself & someone else. 🙌🏾 @DHealthhub #RepresentationMatters #patientvoice #PatientAdvocacy #caregiver #lupus |
| Lillian Lake - Host of #SoulNestingChat @llake RT @abrewi3010: @RareDiseaseDad To often healthcare only hears the negative I believe. There is much to learn in the positive just by starting with the question why? #patientchat |
| Alan Brewington @abrewi3010 @ohhiialexa Cool, then let’s team up to change the world 🤘 #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @abrewi3010 @RareDiseaseDad I agree! How do you think we can break this barrier and hear the "why"? #patientchat |
| Diverse Health Hub @DHealthhub RT @GoldenMoe: 🌬️@yourgpsdoc closed out w simple sage advice "Your empowerment matters." #patientchat If you're a #patient #patienleader #patientadvocate #carepartner pls #rt, remind yourself & someone else. 🙌🏾 @DHealthhub #RepresentationMatters #patientvoice #PatientAdvocacy #caregiver #lupus |
| Memej99-SickleCellLifeOfMemej @Memej99 It was fun! It felt just like talking to my #SickleCell #CommunityCheckIn support group friends! And everyone, I mean EVERYONE involved, are such fantastic people. ❤ |
 | Jonathan Trump says NO TO PEDOJOE @JohnnyApplCreed RT @Memej99: It was fun! It felt just like talking to my #SickleCell #CommunityCheckIn support group friends! And everyone, I mean EVERYONE involved, are such fantastic people. ❤ |
| Christina Lizaso @btrfly12 RT @abrewi3010: CT as patients we have earned the right to bad days but can still have a great life! Despite everything, we completed yesterday which means we have a stronger life skill set than we realize which can provide a great life. #patientchat |
 | Dr. Jill Zitzewitz, PhD (she/her) @JillZitzewitz @patientchat Overwhelming fatigue is real! #patientchat |
| Christina Lizaso @btrfly12 RT @carlyflumer: @llake @patientchat And caregivers are SUCH an important aspect of going through care, yet so under-appreciated. I see you and am making room for all of the emotions you are feeling right now. ❤️ #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @Purrfectly_Rare It is a process. Our life journey is an individual experience. I am sorry for your struggles. My mantra now is "at this moment I am the best I can be and that is enough". #patientchat |
| Alan Brewington @abrewi3010 @llake @RareDiseaseDad Great question which I’m still working on. I believe we should start by celebrating failures as learning opportunities. If this can be accepted then celebrating the positive as learning opportunities should be way right? #patientchat |
| Christina Lizaso @btrfly12 RT @TheBingle: When Drs. put down patients right away because tests reveal nothing wrong, the Drs. always believe tests over patients. Henceforth, those doctors may have things totally wrong.Patient finally goes on own! #patientchat |
| Marni Cartelli @Purrfectly_Rare Love this mantra by @llake! |
| Lillian Lake - Host of #SoulNestingChat @llake RT @abrewi3010: @llake @RareDiseaseDad Great question which I’m still working on. I believe we should start by celebrating failures as learning opportunities. If this can be accepted then celebrating the positive as learning opportunities should be way right? #patientchat |
| Christina Lizaso @btrfly12 RT @LReedsbooks: @patientchat People experiencing illness need to know they are not alone. Illness is a singular experience, however, there is power in knowing that others are also having, not the same, but similar experiences. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @abrewi3010 @RareDiseaseDad I agree with the positive approach. As a positive, I see this pandemic as full of opportunities to improve our world approach to healthcare. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: What would like people to know about your patient experience? #patientchat |
| Christina Lizaso @btrfly12 RT @Purrfectly_Rare: A.4 #patientchat I'm in the midst of handling my biggest hurdle. It is learning the balance between what is a true limitation caused by my #RareDisease vs what I have imposed on myself out of fear or expectation |
| Lillian Lake - Host of #SoulNestingChat @llake RT @LReedsbooks: @patientchat People experiencing illness need to know they are not alone. Illness is a singular experience, however, there is power in knowing that others are also having, not the same, but similar experiences. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @ohhiialexa @abrewi3010 Love it! Keep the hope! I came across these quotes the other day when discussing a local memorial for Anne Frank. As she faced unimaginably difficult situations, she kept her ideals and hope intact. Incredible is an understatement. #PatientChat https://t.co/qfkqI7AGTz |
| Christina Lizaso @btrfly12 RT @GoldenMoe: 🌬️@yourgpsdoc closed out w simple sage advice "Your empowerment matters." #patientchat If you're a #patient #patienleader #patientadvocate #carepartner pls #rt, remind yourself & someone else. 🙌🏾 @DHealthhub #RepresentationMatters #patientvoice #PatientAdvocacy #caregiver #lupus |
| Lillian Lake - Host of #SoulNestingChat @llake @LReedsbooks @patientchat Yes! There are always commonalities. The issue of mental wellness is a good example of finding commonalities and the ability to bridge gaps in understanding. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @Purrfectly_Rare Thank you. It was a long time coming to this understanding. Nearly 7 yrs. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @RareDiseaseDad: @ohhiialexa @abrewi3010 Love it! Keep the hope! I came across these quotes the other day when discussing a local memorial for Anne Frank. As she faced unimaginably difficult situations, she kept her ideals and hope intact. Incredible is an understatement. #PatientChat https://t.co/qfkqI7AGTz |
| Lillian Lake - Host of #SoulNestingChat @llake RT @GoldenMoe: 🌬️@yourgpsdoc closed out w simple sage advice "Your empowerment matters." #patientchat If you're a #patient #patienleader #patientadvocate #carepartner pls #rt, remind yourself & someone else. 🙌🏾 @DHealthhub #RepresentationMatters #patientvoice #PatientAdvocacy #caregiver #lupus |
| Lillian Lake - Host of #SoulNestingChat @llake @LizzieMcFarlane @btrfly12 @patientchat Same here! A quick look at a particular color on my calendar and I know it's importance and status! #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @patientchat: Keep the conversation going between chats with hashtag #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @abrewi3010: CT as patients we have earned the right to bad days but can still have a great life! Despite everything, we completed yesterday which means we have a stronger life skill set than we realize which can provide a great life. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake RT @abrewi3010: I would add we need grace, love, and understanding just like every other human. We are not different, our bodies just dont listen to our quality of life expectations enough. #patientchat |
| Lillian Lake - Host of #SoulNestingChat @llake @abrewi3010 Why yes, every living being needs love and grace. Every life is precious and always a blessing. #patientchat |
#patientchat content from Twitter.