#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 and advocates come to learn from each other and discuss topics of interest to empowered patients. |
 | Anne Polta @AnnePolta Heads up! We're 1 minute away from the start of #patientchat. https://t.co/wNuwEeHzfg |
| Patient Chat @patientchat The Empowered #patientchat is a project of @power4patients and @intakeme |
 | Alan Brewington @abrewi3010 RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/n7mTtucD7x https://t.co/3flOlp8AKh |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
 | AutonomicRN© @AutonomicRN RT @AnnePolta: Heads up! We're 1 minute away from the start of #patientchat. https://t.co/wNuwEeHzfg |
| Alan Brewington @abrewi3010 And #caregivers #patientchat https://t.co/1dBcdRIrAA |
| Patient Chat @patientchat I’m Kara from @power4patients and I’m excited to be moderating today’s #patientchat on Stress Management |
| Patient Chat @patientchat Please continue with intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| AutonomicRN© @AutonomicRN I'm Kim, #raredisease & #patientadvocate. Also blogger and fulltime patient. Also--this is the first chat from the official @AutonomicRN account!! #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 & history. #patientchat |
 | Rie Lopez, MPH (she/her) @RieOfLetters Tweeps, I will be participating in #patientchat for the next hour or so. Follow along because we are talking about #stress. https://t.co/ALJSOsPfRC |
| @CfEpilepsy Hi all! Whit here, #Epilepsy advocate and patient leader tweeting from Dallas,TX! #patientchat | |
 | STELLAR Study @StellarStudy We'll be joining today's #patientchat! |
| Alan Brewington @abrewi3010 Alan here from Boise. I’m an #arthritis #chronicpain #mentalhealth #skier #photographer storytelling patient. And I love cookies. #patientchat |
| @CfEpilepsy RT @patientchat: Join/Share: "Managing the Stress of Being a Patient" Empowered #patientchat TODAY 12/1 1pmET https://t.co/XW0hdgnU6V https… | |
| Patient Chat @patientchat @abrewi3010 You're exactly right Alan! I'll make sure to add that next time and everytime! :) #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/99wmvHL0S2 #patientchat |
| AutonomicRN© @AutonomicRN [REDACTED USER] @Cpnervecenter Hey, hey! Long time no see! #patientchat |
| AutonomicRN© @AutonomicRN @CfEpilepsy Hi Whitney! #patientchat |
 | Heather 🇺🇸 @ZHeatherChamp Hi! Did I miss intros yet? #patientchat |
 | Katie @katie5280 @patientchat Hi, @patientchat community! It's Katie, breast cancer survivor and t2 diabetic! Looking forward to chatting with you today! #patientchat |
 | CP Nerve Center @Cpnervecenter Happy Friday everyone Im Becky from Washington State. RN, #Patient, advocate, and co-founder @Cpnervecenter #patientchat https://t.co/57kj7cFyOs |
| Patient Chat @patientchat @ZHeatherChamp No you are just in time! Glad you could join :) #patientchat |
 | ElizabethKelly, Ph.D @Elizabe85727641 Greetings all, Liz Kelly, posting as a patient & experience/Educ as a health care professional. #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Managing the Stress of Being a Patient https://t.co/n7mTtucD7x https://t.co/3VrP0xI7P5 |
| AutonomicRN© @AutonomicRN @abrewi3010 cookies are always the way to go! #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 |
| AutonomicRN© @AutonomicRN @Cpnervecenter Hi Becky! #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters Hi all!! I made it!! I'm Rie, health educator, delightful patient and patient advocate. #patientchat https://t.co/O5m2wkTvt1 |
| Heather 🇺🇸 @ZHeatherChamp @patientchat Yay! I am Heather, person with 2 rare brain tumors and Rare Disease Cowden Syndrome. #rdsm #patientchat |
 | Richard Zhao @richardzhao Richard Zhao from Minneapolis. Trying to incorporate #patientvoice into our AI technology solution. Just here to learn. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @RieOfLetters Delightful patient! I love that. :) #patientchat |
| @CfEpilepsy @AutonomicRN Hi there!!! #patientchat | |
| Alan Brewington @abrewi3010 @patientchat I just noticed that. #patientchat |
| STELLAR Study @StellarStudy RT @patientchat: Today's #patientchat topic is Managing the Stress of Being a Patient https://t.co/n7mTtucD7x https://t.co/3VrP0xI7P5 |
 | Angela Cohen @angelee828 @patientchat Hi, Angela joining in from Wisconsin! #patientchat |
| CP Nerve Center @Cpnervecenter @RieOfLetters GOOD! not foos. Dumbphone! #Patientchat |
| Patient Chat @patientchat Time to start our topics. Here comes T1: https://t.co/n7mTtucD7x #patientchat |
| Patient Chat @patientchat T1: What is the most stressful part of being a patient for you? #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @patientchat I am on https://t.co/J4IS5Evybw and that link didn't come thru. Will you post actual topic too? #patientchat |
| AutonomicRN© @AutonomicRN @angelee828 @patientchat We hit this perfect everytime! Go #Badgers #patientchat |
| STELLAR Study @StellarStudy The STELLAR Study will be joining today's #patientchat. We're excited to hear from everyone! The STELLAR Study is a clinical trial for patients with #anaplasticastrocytoma. #BTSM #braintumor #braincancer #cancerawareness |
| AutonomicRN© @AutonomicRN @richardzhao Hi Richard! #patientchat |
| Heather 🇺🇸 @ZHeatherChamp A1: Managing EVERYTHING. I have a smart phone but am panicked I will forget something one day. #btsm #pten #patientchat |
| @CfEpilepsy RT @patientchat: T1: What is the most stressful part of being a patient for you? #patientchat | |
| Anne Polta @AnnePolta T1 THE SCALE. Ugh. Stressful. #patientchat |
 | Patient Empowerment Network @power4patients T1: For me the stress came from the not knowing and just having to wait to hear the results of tests, treatments, etc. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @AnnePolta That's a biggie too! #patientchat |
| AutonomicRN© @AutonomicRN T1: I don't think I can name just one. It's a culmination of a lot of things. Having to follow up on appointments, medications, tests and still manage to attempt to live your "new normal" each time something comes up. Constantly evolving #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @RieOfLetters Hi! #patientchat |
| Alan Brewington @abrewi3010 T1 today is the dual role of being a #ChronicPain and #caregiver patient. My caregiving duties are dealing with end of life #eol issues for dad. #patientchat |
| Anne Polta @AnnePolta My mom has dementia. Doctor visits = total cognitive overload. I have to constantly direct/redirect, manage the communication, etc. Stressful for both of us. #patientchat #caregiving |
| AutonomicRN© @AutonomicRN @AnnePolta OMG, I hate that thing!! It's always at least 5 lbs off from the scale at home!! #patientchat |
| @CfEpilepsy T1: the most stressful part of being a patient for me is not knowing the cause of my epilepsy! Maybe we could have better treatment options if we know WHY! #patientchat | |
| Heather 🇺🇸 @ZHeatherChamp @AutonomicRN @AnnePolta I've given up on my home scale and only use my doctors. :) #patientchat |
| Katie @katie5280 @patientchat T1: Keeping up with the changing technologies and treatments so that I can advise the others I support, but to learn what's best for me too. #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters T1: I second this! Waiting to get test results, waiting for appointments with specialists, waiting for someone to figure out what was happening to me. #patientchat https://t.co/aBNOqYX7FY |
| Heather 🇺🇸 @ZHeatherChamp RT @ingevdln A1 the energy I need to prove that I am not 'just' a patient #patientchat |
| Patient Empowerment Network @power4patients T1: Check out @melissarvh as she describes it all so well in her blog, "Chronic Illness: Oh the Stress of It All" https://t.co/85Rrsy1MLL #patientchat |
| AutonomicRN© @AutonomicRN @CfEpilepsy The what if's and unknowns are so hard. #patientchat |
| ElizabethKelly, Ph.D @Elizabe85727641 T1 The lack of HC staff preparation to meet, greet, respect patient/family & their health care understanding; MD’s pressure to monitor time spent with patient > poor listening #patientchat |
 | Melissa VanHouten @melissarvh A1 Trying medication after medication hoping one will have a positive effect; financial burdens are also very high on the list. #patientchat |
| Anne Polta @AnnePolta @AutonomicRN And then the next thing they do is... take your blood pressure. Which of course is going to be higher. #patientchat |
| AutonomicRN© @AutonomicRN It's a full time job just to keep the plates spinning! #patientchat https://t.co/LT2wuEuLl8 |
| Melissa VanHouten @melissarvh @power4patients Thank you kindly! 💚 #patientchat |
| CP Nerve Center @Cpnervecenter T1 Money issues from Losing professional income, and Worrying about Med refills. 26 days-No. 27 days YES! And Sorry can't go out of state because can't get refills. #patientchat |
| Richard Zhao @richardzhao Thanks for the mention! AutonomicRN: @richardzhao Hi Richard! #patientchat |
 | Beth Morton @beth_morton @patientchat A1: For me, working with a doctor who doesn't like collaboration and won't speak with me directly btw appointments. #patientchat |
| Richard Zhao @richardzhao Thanks for the mention! lisadbudzinski: @richardzhao Hi Richard! 👋 #Patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters @AnnePolta The scale and I have a hate/hate relationship. Not just when I have difficulty getting on/keeping balance, but EVERYTHING seems to make the number keep going up... ☹️ #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @melissarvh YES! This a thousand times this! Financial ruin for me since dx. #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up...https://t.co/n7mTtucD7x #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @beth_morton Ew. Sounds terrible! #patientchat |
| AutonomicRN© @AutonomicRN @melissarvh and dealing with the side effects or adverse reactions of the ones that don't help #patientchat |
| Melissa VanHouten @melissarvh RT @AutonomicRN: @melissarvh and dealing with the side effects or adverse reactions of the ones that don't help #patientchat |
| Alan Brewington @abrewi3010 T1 while wearing dual hats I get constantly reminded about #selfcare. No one can tell me when I should practice self care though with my schedule. Finding that stressful #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @AutonomicRN: @CfEpilepsy The what if's and unknowns are so hard. #patientchat |
| Anne Polta @AnnePolta T1 The lack of control over the environment. In theory we should have some say but often we don't. #patientchat |
| Beth Morton @beth_morton #patientchat This is Beth. Joining from Vermont for the first time! (Actually riding in a car w spotty signal.) |
| CP Nerve Center @Cpnervecenter @AutonomicRN @AnnePolta Always! Ive thought about asking to skip it. #Patientchat |
| Patient Chat @patientchat T2: What do you do to cope with or reduce stress? #patientchat |
| @CfEpilepsy RT @patientchat: T2: What do you do to cope with or reduce stress? #patientchat | |
| AutonomicRN© @AutonomicRN @Cpnervecenter Just had to go through this again. Transferring prescriptions to another state while I was with my dad. Also needed my PCP to call abx so I didn't have to be seen out-of-network and get nailed with that charge too! #patientchat |
| Patient Chat @patientchat @beth_morton Glad you could join us, we are on Topic 2 :) #patientchat |
| Beth Morton @beth_morton @ZHeatherChamp It adds a whole extra layer of unnecessary stress. I'd switch if I could! #patientchat |
| AutonomicRN© @AutonomicRN @Cpnervecenter @AnnePolta I do sometimes, I just tell them that I weighed myself in the morning ;) #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @AnnePolta Well said. #patientchat |
| Alan Brewington @abrewi3010 [REDACTED USER] My dad has dementia too. I’m still trying to work full time as a patient. Dad doesn’t get the time he deserves to often. #patientchat |
| Katie @katie5280 @power4patients That can be hard! I cope by reminding myself that I can't change what the results are & be sure to follow up if I don't have those results when promised! #patientchat |
| Anne Polta @AnnePolta T2 I try to be prepared and collect my thoughts ahead of time. I try to allow plenty of time to park, go thru registration, etc. And a lot of inhale/exhale. #patientchat |
| AutonomicRN© @AutonomicRN T2: Focus on one item at a time. Break things into manageable chunks. Take time for yourself. Timeouts aren't just for kids, we need them too. Take a deep breath and just let it all go away, even for five minutes #patientchat |
| Patient Empowerment Network @power4patients T2: Learning as much as I could about my disease from reputable (key word here) sources helped to minimize some of that anxiety and stress #patientchat |
| Alan Brewington @abrewi3010 T2 lately I turn to @GinaMcGalliard & @casepub for support & laughter. #patientchat |
 | John Lynn @techguy Great #patientchat topic today. Reminds me of the Patient Burnout #HITsm chat we did with @GilmerHealthLaw as host. |
| Angela Cohen @angelee828 @patientchat T1: 4 me it’s waiting. Waiting 2 hear back on results, 4 my specialists 2 connect w/ each other, 2 know next options, or even on good days I feel at times I’m waiting 4 the other shoe to drop. It’s why I ask lots of questions & educate myself as best I can. #patientchat |
| ElizabethKelly, Ph.D @Elizabe85727641 T2 seek information from other HC professions, read HC research literature, talk with friend & document possible errors/interaction to HC pro’s #patientchat |
| CP Nerve Center @Cpnervecenter @AutonomicRN So annoying! And of course it happened while you were dealing with another huge stressful issue with your dad. #Patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters T2: TBH, I see a therapist. I also schedule #selfcare in my calendar, practice mindfulness, and I meditate. Sometimes I blog or just write a sentence in my journal. #patientchat |
| AutonomicRN© @AutonomicRN @techguy @GilmerHealthLaw I was kind of thinking the same thing! #patientchat |
| Katie @katie5280 @patientchat T2: Take a deep breath, remind myself to accept the things I can not change & take care of myself by eating right and exercising. #patientchat |
| Alan Brewington @abrewi3010 T2 ideally I would find time for some float therapy and skiing. In the meantime I do take my camera out for a nice distraction from stress #patientchat |
| CP Nerve Center @Cpnervecenter @AutonomicRN @AnnePolta I'm gonna try that! I don't need a reminder that I gained another 5lbs. Stressed enough! #Patientchat |
| AutonomicRN© @AutonomicRN @Cpnervecenter Exactly, because we all know that I needed just one more thing to ice the cake #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up...https://t.co/n7mTtucD7x #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters @power4patients I absolutely agree with your emphasis on reputable sources! There are a lot of individuals and companies out there who try to take advantage of vulnerable people! #patientchat |
| Melissa VanHouten @melissarvh A2 Focus on the things over which I have control & deal with those I do not (as calmly and logically as possible) as they arise #patientchat |
| AutonomicRN© @AutonomicRN @RieOfLetters Blogging is a huge release for me. It's my escape from reality. I also go to counseling when the load feels like it's getting too heavy. #patientchat |
| Beth Morton @beth_morton A2: I meditate, bake, call friends. I also started a blog that really no one reads, but it's helpful to write. I also stay informed of new #research. #patientchat |
| Katie @katie5280 @beth_morton @patientchat It's kind of like "what's the point" if the provider won't collaborate in any way. The nurse or other staff shouldn't have to play middleman. #patientchat |
| Anne Polta @AnnePolta @Cpnervecenter @AutonomicRN A few times I've just told them, "No thanks, I'm a conscientious objector." #patientchat |
| @CfEpilepsy T2: to De-stress I practice mindfulness meditation, journaling and always always getting fresh air, it does wonders! #patientchat | |
| Patient Chat @patientchat T3: How can Health Care Professionals (HCPs) help patients cope with stress and empower them? #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters @abrewi3010 I really want to try FLOAT Therapy. How do you like it? #patientchat |
| Alan Brewington @abrewi3010 [REDACTED USER] @GinaMcGalliard @casepub If you can’t laugh “it” wins. #patientchat |
| AutonomicRN© @AutonomicRN @AnnePolta @Cpnervecenter 🤩 #patientchat |
| Melissa VanHouten @melissarvh A2 Often play "what's the worst that could happen?" & then try to find answers to that. Often, worst case is not total disaster #patientchat |
| @CfEpilepsy RT @patientchat: T3: How can Health Care Professionals (HCPs) help patients cope with stress and empower them? #patientchat | |
| Alan Brewington @abrewi3010 T3 accept that stress & anxiety are a symptom of every disease. Talk and management this symptoms like everything else. #patientchat |
| Richard Zhao @richardzhao T2. Does crowd intelligence helping understanding disease? #patientchat |
| Anne Polta @AnnePolta @JotallyWalksome @AutonomicRN Oh not. So sorry to hear this. #patientchat |
| Patient Empowerment Network @power4patients T3: In this video Dr. Cohen from @MDAndersonNews explains the effects of stress and shares what can be done to help manage stress https://t.co/gwordO2hCd #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters @melissarvh I'm so glad this works for you. I know it is so helpful for a lot of people. Unfortunately, my brain locks in on the worst case and I can't seem to get unstuck. #patientchat |
| Beth Morton @beth_morton T3: My stress is best helped when my docs hear me, don't dismiss my concerns or ideas, recognize my anxiety. #patientchat |
| AutonomicRN© @AutonomicRN @abrewi3010 [REDACTED USER] @GinaMcGalliard @casepub Exactly, you have to keep a sense of humor. If you can't then @abrewi3010 has it nailed! IT wins any time that we can't laugh about it! We are in charge, not it... #patientchat |
| Heather 🇺🇸 @ZHeatherChamp A2: Doing creative things helps me manage my stress: Editing photos, writing on my blog, etc. #patientchat |
| Melissa VanHouten @melissarvh A3 Be upfront & give complete info (whether good or bad); offer to assist w/ insurance & payment issues& work w/ me when behind #patientchat |
| CP Nerve Center @Cpnervecenter T2 Throughout the day on phone I laugh with family and friends. I do Yoga and other endorphin producers, love my dog, and advocate with my peeps online and biz partner [REDACTED USER] #patientchat |
| ElizabethKelly, Ph.D @Elizabe85727641 T3 Recognition by HC providers that they work as a team member with/for patient, that patients have knowledge HCP can use & impt for care/treatment planning. #patientchat |
 | Chordoma Foundation @ChordomaFDN RT @power4patients: T3: In this video Dr. Cohen from @MDAndersonNews explains the effects of stress and shares what can be done to help man… |
| Heather 🇺🇸 @ZHeatherChamp @AnnePolta I too try that. I sometimes write a note in my phone of Qs for each of my docs. #patientchat |
| Alan Brewington @abrewi3010 T3 realize there is no such thing as good/bad info(news). Info has power to cure stress, regardless of good/bad perception #patientchat |
| Melissa VanHouten @melissarvh A3 Listen when I tell them something isn't working 4 me, that my symptoms are worse, or that my goals are different from doc's. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @power4patients What a blessing! I had no resources in 2011 and had to make my own way finding info., etc. #patientchat |
| CP Nerve Center @Cpnervecenter @melissarvh I love that! What's the worst that could happen? Great idea. #Patientchat |
| AutonomicRN© @AutonomicRN T3: Always have an emotional self check at each appointment. Sometimes just having someone ask how we are ACTUALLY doing means more than any medicine. The power of being acknowledged and knowing that it's okay to have feelings and be stressed is huge! #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters T3: Health care providers can help patients by acknowledging and validating our concerns. Check in with us and ask how we are coping and listen to the answer. #patientchat |
| Patient Chat @patientchat Topic 4 (T4:) coming up...https://t.co/n7mTtucD7x #patientchat |
| Alan Brewington @abrewi3010 RT @AutonomicRN: @abrewi3010 [REDACTED USER] @GinaMcGalliard @casepub Exactly, you have to keep a sense of humor. If you can't then @abrewi… |
| Katie @katie5280 @RieOfLetters Hi! Welcome to #patientchat! |
| @CfEpilepsy T3: mental wellness/stress management should be apart of treatment in my opinion when diagnosed with any chronic illness. #patientchat | |
| Heather 🇺🇸 @ZHeatherChamp [REDACTED USER] To help manage my #scanxiety, I buy myself new fluffy/fuzzy socks. It helps my mood a lot! #btsm #patientchat |
| Anne Polta @AnnePolta RT @RieOfLetters: T3: Health care providers can help patients by acknowledging and validating our concerns. Check in with us and ask how we… |
| Patient Chat @patientchat T4: What do you think the role of diet, exercise, and maintaining a healthy lifestyle play into managing stress? And how can you keep it up during this time of year? #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @RieOfLetters Oh me, too on the therapist. I want to meditate but don't know how. #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters All of this! 👇👇 #patientchat https://t.co/pzNucOeypV |
| Heather 🇺🇸 @ZHeatherChamp @katie5280 The Serenity Prayer. :) #patientchat |
| AutonomicRN© @AutonomicRN Treating the WHOLE patient isn't taken into account nearly enough. So many times, we are given a diagnosis and then just sent home to figure it out and learn how to cope. Mental health is a part of all illnesses. #patientchat https://t.co/tGxT2eV5Pg |
| CP Nerve Center @Cpnervecenter T3 Ask patients how they deal with stress and decompress. And assess for depression. Then help them find options if they need it. Exercise, talking, meds, friends, groups etc. #patientchat |
| @CfEpilepsy RT @AutonomicRN: T3: Always have an emotional self check at each appointment. Sometimes just having someone ask how we are ACTUALLY doing m… | |
| Heather 🇺🇸 @ZHeatherChamp @AutonomicRN @RieOfLetters Same for me! #patientchat |
| Patient Empowerment Network @power4patients @ZHeatherChamp UGH! Sorry to hear that :( All patients should have access to resources to make the best and informed decisions for them #patientchat |
| @CfEpilepsy RT @patientchat: T4: What do you think the role of diet, exercise, and maintaining a healthy lifestyle play into managing stress? And how c… | |
| Heather 🇺🇸 @ZHeatherChamp @beth_morton I'd read it! Do you share the link publicly? #patientchat |
| Katie @katie5280 @patientchat T4: These are huge things! When there are so many things beyond your control, you can often control what food goes into your mouth & what exercise you do. #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters @ZHeatherChamp I use guided meditations. There are some resources that can suggest. Hit me up in DM if you want. Any time! #patientchat |
| Patient Empowerment Network @power4patients RT @AutonomicRN: Treating the WHOLE patient isn't taken into account nearly enough. So many times, we are given a diagnosis and then just s… |
| CP Nerve Center @Cpnervecenter @RieOfLetters Great point. Ive literally asked my doctor for a hug when she walked in. It was obvious what we needed to discuss. ☺#Patientchat |
| Angela Cohen @angelee828 @patientchat T2: I try to educate myself on my disease(s) w/the help of my HCPs, I take time for self care and tell myself that some days I just can’t, I have a mindfulness app, I’ve found a support system online and IRL who are always there. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp [REDACTED USER] I'd so much love to get involved in research! #patientchat |
| AutonomicRN© @AutonomicRN T4: each item is important to our overall wellness. We also know that we have "comfort foods" and those are important for coping as well. For the holidays, try to stay as close to your baseline as possible #patientchat |
| Patient Chat @patientchat Note: If you have any issues w/ https://t.co/VifqTJMJc0 or https://t.co/AZjP46OXmh you can try https://t.co/pWygNNegvZ #patientchat |
| ElizabethKelly, Ph.D @Elizabe85727641 T4 Vital to consider diet, SDOH, access to exercise, eat less during holiday & laugh more with others who can relate without pretense of self or the season. #patientchat |
| Katie @katie5280 @patientchat T4, part 2: During the holidays, it's important to stick to a schedule and be prepared by bringing snacks or eating ahead of time if you know that your workplace or destination will be goodies galore! #patientchat |
| Melissa VanHouten @melissarvh A4 Diet is as healthy as possible w/#Gastroparesis. Same w/exercise. Certainly help but must accept limitations of illness, too #patientchat |
 | Holleigh Bryan 💚🏴 @HolleighLouise #PatientChat Hi I'm an Occupational Therapy Student and I'll be setting up a new Occupational Therapy role within a service soon. I am interested in finding out how I can involve patients in its development. I'd love to hear your thoughts. |
| Heather 🇺🇸 @ZHeatherChamp @patientchat Are they glitching? My only prob is when ppl RT their replies I don't see them all. :( #patientchat |
| Alan Brewington @abrewi3010 T4 diet & exercise are key in relieving stress. A nice cheeseburger is great comfort food but adds stress to the body. A simple 15 min walk at break can be rewarding too. #patientchat |
| Richard Zhao @richardzhao What can make more patientsto participate supporting groups like this? What’s the trigger? #patientchat |
 | Mary MACK @MaryOCMack T4. I heard a saying: move a muscle, change a thought. So true #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @RieOfLetters Yes please! #Patientchat |
| Holleigh Bryan 💚🏴 @HolleighLouise RT @AutonomicRN: Treating the WHOLE patient isn't taken into account nearly enough. So many times, we are given a diagnosis and then just s… |
| Heather 🇺🇸 @ZHeatherChamp @richardzhao Many I have connected w hold hard and fast to FB. Won't look at other resources. #patientchat |
| Holleigh Bryan 💚🏴 @HolleighLouise RT @abrewi3010: T3 accept that stress & anxiety are a symptom of every disease. Talk and management this symptoms like everything else. #pa… |
| Beth Morton @beth_morton T4: I use diet to manage my condition. Regular sleep is also key, but a struggle sometimes. I'm worst at exercise. It's so hard when I feel awful. #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up...https://t.co/n7mTtucD7x #patientchat |
| Heather 🇺🇸 @ZHeatherChamp A4: I deal with depression so I know how vital exercise is, yet I still struggle with doing it. #patientchat |
| Holleigh Bryan 💚🏴 @HolleighLouise @abrewi3010 I love this! Not just stress and anxiety, we should be talking how a diagnosis impacts on mood, spirituality and identity! #PatientChat |
| Alan Brewington @abrewi3010 T4 motion is great for joints. It provides lotion for them. But it also helps our brains & mental state. Keeps the oxygen (lotion) fresh. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @beth_morton I have horrible insomnia. Horrible! #patientchat |
| Patient Chat @patientchat T5: Do you have any tips or tricks that have helped you manage the stress of the holiday season? #patientchat |
| AutonomicRN© @AutonomicRN @richardzhao Common threads. Similar circumstances or life events. It's a safe place to communicate with others #patientchat |
| Melissa VanHouten @melissarvh A4 I like to run but must recognize my speed & endurance are not what they were pre-diagnosis. Do what I can, when I can, now. #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters T4: Maintaining a healthy lifestyle (diet, movement, stress relief) are vital to overall health and well-being. I highly recommend scheduling everything, as a commitment to yourself. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @patientchat I'm on tweet chat and didn't see your T4. But, it's hard when people RT their reply. Entire thread isn't visible. Oh welp! #patientchat |
| Anne Polta @AnnePolta @beth_morton Ditto. I find I have to be patient with myself about backsliding. Letting go of high self-expectations is part of my stress management. If this were easy, everyone would be doing it, right? #patientchat |
| AutonomicRN© @AutonomicRN [REDACTED USER] @JotallyWalksome @AnnePolta There is always the option of blocking accounts. That may be something useful and you can report the tweets as abusive also. But, it still doesn't make it right by any means #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters T4(b): There have been some great chats on healthy behaviors during the holidays. Keep healthy snacks available, drink plenty of water, say no, and ask for help. #patientchat |
| CP Nerve Center @Cpnervecenter T4 Exercise Endorphins are my mainstay when nothing else is working. Just a few minutes makes A big difference. A healthy Diet is a no brainer but hard to maintain when u hurt and it's easiest to grab a handful of crackers. #patientchat |
| Patient Chat @patientchat @JotallyWalksome [REDACTED USER] @AnnePolta @AutonomicRN That's awful! So sorry this happened to you :( Sometimes when #patientchat is trending we get more spam. You can report inappropriate tweets by clicking on MORE to block them, file report, then check SPAM box |
 | PF Anderson @pfanderson@disabled.social @pfanderson RT @AutonomicRN: T3: Always have an emotional self check at each appointment. Sometimes just having someone ask how we are ACTUALLY doing m… |
| Heather 🇺🇸 @ZHeatherChamp @Cpnervecenter I try to walk at least 20 min. minimum every day. Not always, but that's my goal. #patientchat |
| Melissa VanHouten @melissarvh A5 Ignore expectations of others & lose the unrealistic demands you sometimes place on yourself; no guilt when you can't join. #patientchat |
| Alan Brewington @abrewi3010 RT @HolleighLouise: @abrewi3010 I love this! Not just stress and anxiety, we should be talking how a diagnosis impacts on mood, spiritualit… |
| AutonomicRN© @AutonomicRN @ZHeatherChamp @patientchat You're doing great! #patientchat |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @Cpnervecenter: T3 Ask patients how they deal with stress and decompress. And assess for depression. Then help them find options if they… |
| ElizabethKelly, Ph.D @Elizabe85727641 T5 Let go of negative/judgment vibes/Words, participate in activities that bring forth good feelings based on past experiences = cooking, decorating #patientchat |
| Heather 🇺🇸 @ZHeatherChamp A5: I try to stay away from the "stress" word at Christmas time. I choose to focus on my blessings instead. #patientchat |
| CP Nerve Center @Cpnervecenter @melissarvh I had to give up running! ☹ Oh how I miss that endorphin rush! #Patientchat |
| Alan Brewington @abrewi3010 T5 it’s my holiday too. How might we work together so everyone can have fun? #patientchat |
| Mary MACK @MaryOCMack T5: I let go of trying to make everything wonderful. 🙄 #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @richardzhao Yes. And they are usually unmoderated and egos/anger/etc. run amok and ruin the experience, for a newbie too. #patientchat |
| Beth Morton @beth_morton @ZHeatherChamp I was just diagnosed with mild sleep apnea. I'm hoping correcting it helps my waking throughout the night. #patientchat |
| Melissa VanHouten @melissarvh A5 Simplify when & where you can; stagger visits/events; rest whenever possible; have an exit plan. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @AutonomicRN @patientchat HAHA! You too! #Patientchat |
| AutonomicRN© @AutonomicRN T5: Make time for yourself. Whether it is 20 minutes a day to just close your eyes and relax or reading a book. I have to do something to physically remove myself from a situation. Have had stress overload the last couple weeks with holidays, family, and health. #patientchat |
| CP Nerve Center @Cpnervecenter T5 SHOP ONLINE! And Let people help when they ask if they can do anything for you. #patientchat |
| Holleigh Bryan 💚🏴 @HolleighLouise #Patientchat retweeting again to hopefully get some replies! Would love to hear your thoughts! https://t.co/72QpsVLhNE |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @Elizabe85727641: T1 The lack of HC staff preparation to meet, greet, respect patient/family & their health care understanding; MD’s pre… |
| Anne Polta @AnnePolta T5 I focus on the rituals that matter the most and let go of the rest. It also helps to literally schedule some down time each day. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @AutonomicRN I made a goal to read 2 books in Dec. I should prob get of Twitter and get on that reading goal! #patientchat |
| Patient Chat @patientchat Last Topic (T6:) coming up...https://t.co/n7mTtucD7x #patientchat |
| @CfEpilepsy RT @patientchat: T5: Do you have any tips or tricks that have helped you manage the stress of the holiday season? #patientchat | |
| Alan Brewington @abrewi3010 T5 family doesn’t always mean blood. Celebrate with your family, not Normal Rockwell’s version of family. That’s his opinion, not reality. #patientchat |
| @CfEpilepsy RT @RieOfLetters: T4: Maintaining a healthy lifestyle (diet, movement, stress relief) are vital to overall health and well-being. I highly… | |
| AutonomicRN© @AutonomicRN This!! Exit plans are a must! #patientchat https://t.co/uA3NUEJiTd |
| Melissa VanHouten @melissarvh @richardzhao Online groups (esp. on FB) are my life now. I admin many & find them more helpful than any other resource 4 info & support. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @Cpnervecenter I think I am an oddball at most bc I kinda love the energy on Black Friday, etc. :) #patientchat |
| Patient Chat @patientchat T6: How can patients handle all the questions they may get about their illness during the holidays from family and friends they don’t normally see? #patientchat |
| Heather 🇺🇸 @ZHeatherChamp A6: Sometimes, I will say to friends/fam: Check my blog and IG for updates on my health. :) #patientchat |
| AutonomicRN© @AutonomicRN @Cpnervecenter OMG yes! I do all my shopping online. I just can't handle people sometimes! It's bad enough ordering lunch sometimes, let alone trying to get a gift certificate! #patientchat |
| CP Nerve Center @Cpnervecenter @ZHeatherChamp Great goal! I just got a Fitbit. At least it reminds me to do my 250 steps per hour. #Patientchat |
| Richard Zhao @richardzhao @ZHeatherChamp This is what I experienced #PatientChat |
| Heather 🇺🇸 @ZHeatherChamp [REDACTED USER] @richardzhao Me too! I was run out of a FB group after DX because I was "too complainy". #patientchat |
| Alan Brewington @abrewi3010 @HolleighLouise Bring a patient to a education class. Have the patient translate the lecture into patient speak. Will be a difference. Have a patient teach a class. #patientchat |
| @CfEpilepsy RT @melissarvh: A5 Simplify when & where you can; stagger visits/events; rest whenever possible; have an exit plan. #patientchat | |
| Alan Brewington @abrewi3010 RT @HolleighLouise: #PatientChat Hi I'm an Occupational Therapy Student and I'll be setting up a new Occupational Therapy role within a ser… |
| Rie Lopez, MPH (she/her) @RieOfLetters A5: Advocate for yourself. If I am heading somewhere, I reach out beforehand to let friends and family know what I need (like a quiet room if I get tired or that I will be rocking my sunglasses). #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @Cpnervecenter YES! Mine is charging thx for the reminder to get it on! #patientchat |
| @CfEpilepsy RT @patientchat: T6: How can patients handle all the questions they may get about their illness during the holidays from family and friends… | |
| Richard Zhao @richardzhao @melissarvh Bringing it to a higher level, patients use social media to find info and support. But, need a better platform #PatientChat |
| Katie @katie5280 @patientchat T5: Just do what you can do. Be sure to take time to rest and practice self care. #patientchat |
| AutonomicRN© @AutonomicRN T6: Take time ahead of being around a group of people to think about your responses. I find that most people want to avoid talking about my health. When you're home and not out and about, it is really hard to talk to people. I've gotten more comfortable with you #patientchat |
| Melissa VanHouten @melissarvh [REDACTED USER] People can be unreasonable & cruel but you know your limits. Their refusal to see that is yet another slap in the face. I am sorry. #patientchat |
| ElizabethKelly, Ph.D @Elizabe85727641 T6 Be selective with whom share information, to everyone else,”doing fine” no further explanation needed. #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @AutonomicRN: @Cpnervecenter OMG yes! I do all my shopping online. I just can't handle people sometimes! It's bad enough ordering lunch… |
| CP Nerve Center @Cpnervecenter T6 Allow others to discuss your disease/disability for you. Everyone will know what's up and you won't have to tell the entire story everytime. My mom does that for me 💗#patientchat |
| Alan Brewington @abrewi3010 T6 anytime is a great time for advocacy. A audience of 1 still counts as changing the world through your story. #patientchat |
| @CfEpilepsy I’m so guilty of doing this 🤦🏾♀️ #patientchat https://t.co/3FLogIyW6U | |
| AutonomicRN© @AutonomicRN @RieOfLetters Absolutely! All of our friends and family know that if I get up and leave the room, they don't need to ask questions. It's too hard to explain sometimes. They know that I don't feel good. #patientchat |
| Melissa VanHouten @melissarvh @richardzhao A platform where healthcare professionals & patients could interact in some meaningful manner would be nice. #patientchat |
| Katie @katie5280 @AutonomicRN You are so right! Thank you for saying this. #patientchat |
| CP Nerve Center @Cpnervecenter @ZHeatherChamp Me too. 13 minutes to get my 250. LOL #Patientchat |
| Melissa VanHouten @melissarvh A6 Ha! Well, I give them all the information they would like & more! I am not shy about discussing my illness. #Gastroparesis #patientchat |
| AutonomicRN© @AutonomicRN I finally got mad at my dad one day because he asks every single day how I am. I had hit the breaking point. I told him that if I had a stroke or died that my husband would call him and that if there was a miracle, then I would call him. He thought I was joking #patientchat https://t.co/pHNQLESp1o |
 | Inspire @InspireIsHealth RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/n7mTtucD7x https://t.co/3flOlp8AKh |
| AutonomicRN© @AutonomicRN @katie5280 You're welcome! It isn't taken into account nearly enough and should be! #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters This is awesome! #patientchat https://t.co/Bi5dVLEemV |
| CP Nerve Center @Cpnervecenter [REDACTED USER] Me too. And I've always been so independent I still feel bad saying yes to help. But I'm getting better all the time #Patientchat |
| Richard Zhao @richardzhao @melissarvh This is even better. Moving the needle always needs to start from one side. I think providers have no motivation to change unless patients give more pressure. Same for payers and congress #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 |
| Melissa VanHouten @melissarvh RT @abrewi3010: T6 anytime is a great time for advocacy. A audience of 1 still counts as changing the world through your story. #patientchat |
| Alan Brewington @abrewi3010 @HolleighLouise I would ask patients first what they think your role in their care should be. Make sure that matches your idea of what your role is. Creating content will be easy after that. #patientchat |
| AutonomicRN© @AutonomicRN [REDACTED USER] BINGO #patientchat |
| @CfEpilepsy @AutonomicRN My frustration comes from no one contacts me outside of the holidays to see “how I’m managing” but finds a sudden interest. Don’t ask me now! #patientchat | |
| Melissa VanHouten @melissarvh @ingevdln @richardzhao I like Twitter but I am fond of FB as well. It has its problems, but it is still my lifeline. Nothing on Twitter functions quite like a Facebook group. #patientchat |
| Rie Lopez, MPH (she/her) @RieOfLetters CT: Find some good and healthy ways to reduce stress and use them. Reach out to others who offer support. Don't be ashamed or embarrassed to ask for help. #patientchat |
| Mary MACK @MaryOCMack T6: that's a question I always dread. People want to show they care, but within seconds there's an eye glaze-over. #patientchat |
| Melissa VanHouten @melissarvh RT @richardzhao: @melissarvh This is even better. Moving the needle always needs to start from one side. I think providers have no motivati… |
| Patient Chat @patientchat RT @RieOfLetters: CT: Find some good and healthy ways to reduce stress and use them. Reach out to others who offer support. Don't be ashame… |
| AutonomicRN© @AutonomicRN CT: Stress and emotional well being need to be considered every day of the year and not just holidays. The whole person needs to be addressed, not just a symptom. I'm a real, live human and I have emotions. I'm more than a number. Another great chat as usual! Thanks #patientchat |
| Melissa VanHouten @melissarvh RT @AutonomicRN: CT: Stress and emotional well being need to be considered every day of the year and not just holidays. The whole person ne… |
| @CfEpilepsy All of this! #epilepsy #patientchat https://t.co/6eG20AuQYO | |
| Katie @katie5280 @patientchat T6: This question reminds me of a slide from @TriageCancer webinar on dealing with the holiday season.#patientchat https://t.co/KMPdR0KG9L |
| AutonomicRN© @AutonomicRN @CfEpilepsy The once a year check in family/friends... Grr #patientchat |
| Richard Zhao @richardzhao [REDACTED USER] @melissarvh Our current healthcare structure doesn’t support taking care patient as a whole. Too many hands into patients pockets, even some providers want to change that all failed #PatientChat |
| Katie @katie5280 @patientchat CT: It's always wonderful to hear and learn from others in the #patientchat community! Everyone has ideas and thoughts that are important to bring to the table. |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| AutonomicRN© @AutonomicRN So true! Copy this and keep it in your pocket this holiday season! #patientchat https://t.co/K9wdMWHz6S |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15min past the hour. |
| Melissa VanHouten @melissarvh Many thanks to @patientchat 4 hosting another informative & engaging chat! Greatly appreciate all you do 4 patients! #patientchat |
| Melissa VanHouten @melissarvh RT @richardzhao: [REDACTED USER] @melissarvh Our current healthcare structure doesn’t support taking care patient as a whole. Too many hand… |
| CP Nerve Center @Cpnervecenter CT Ask for help/ideas if you need assistance to lower stress, Look for endorphin opportunities wherever you can, and remember that helping others feels great & fills a void in both the helper and the helpee. 😀 #patientchat |
| Holleigh Bryan 💚🏴 @HolleighLouise @abrewi3010 Oo fantastic thank you very much. Out of interest, how do you recommend I ensure that the patients feel valued, even if I am unable to take their ideas on? For whatever reason. Obviously explain to them why I cannot carry out that activity... #PatientChat |
| Patient Chat @patientchat The next and last Empowered #patientchat of the year will be Friday, December 15th at 1pm ET https://t.co/MnZwIOKfTK |
| @CfEpilepsy This is good for all conditions #patientchat https://t.co/zGxiw0yKOU | |
| Melissa VanHouten @melissarvh RT @patientchat: The next and last Empowered #patientchat of the year will be Friday, December 15th at 1pm ET https://t.co/MnZwIOKfTK |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Alan Brewington @abrewi3010 #Medx Here is an occupational therapist student looking to include patients. Any suggestions? #patientchat #hcsm https://t.co/baeVVnzSfI |
| @CfEpilepsy RT @katie5280: @patientchat CT: It's always wonderful to hear and learn from others in the #patientchat community! Everyone has ideas and t… | |
| CP Nerve Center @Cpnervecenter Thanks again #patientchat . Your tweetchats bring together a bunch of really kind, smart, caring people. I so love to be a part of this! #Patientchat https://t.co/7hp2I3TZ7P |
| Holleigh Bryan 💚🏴 @HolleighLouise @abrewi3010 Thank you so much for spreading the word! #Patientchat |
| Alan Brewington @abrewi3010 @ingevdln @HolleighLouise So cool and great to hear. Patients, caregivers, doctors, therapists all speak a different form of healthcare. Need to speak same language. #patientchat |
| Melissa VanHouten @melissarvh RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Alan Brewington @abrewi3010 @HolleighLouise You are welcome! #patientchat |
| Holleigh Bryan 💚🏴 @HolleighLouise @abrewi3010 @ingevdln Definitely and often each patient has different levels of understanding of language, for a variey of reasons, so its important to get it right! #Patientchat |
| Alan Brewington @abrewi3010 @HolleighLouise I would ask yourself why you can’t take their ideas on? Why can’t their contributions be included? Then ask how might we include ...? #patientchat |
#patientchat content from Twitter.