#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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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
Lisa Davis Budzinski @lisadbudzinski
Hi everyone! Lisa here, Co-founder of @Cpnervecenter Avis Advocate of #patientpetspective #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 @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
Rheumatoid Patient @rheumpatient
I have rheumatoid arthritis and am a patient research partner from the UK. #patientchat
Whitney Petit @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
Whitney Petit @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
@lisadbudzinski @Cpnervecenter Hey, hey! Long time no see! #patientchat
AutonomicRN© @AutonomicRN
@CfEpilepsy Hi Whitney! #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @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
Lisa Davis Budzinski @lisadbudzinski
@AutonomicRN @Cpnervecenter Howdy howdy howdy!! #patientchat
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
Lisa Davis Budzinski @lisadbudzinski
@Cpnervecenter Don’t forget your coffee Pard! 😄 #patientchat
AutonomicRN© @AutonomicRN
@Cpnervecenter Hi Becky! #patientchat
Rie Lopez, MPH @RieOfLetters
Hi all!! I made it!! I'm Rie, health educator, delightful patient and patient advocate. #patientchat https://t.co/O5m2wkTvt1
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@patientchat Yay! I am Heather, person with 2 rare brain tumors and Rare Disease Cowden Syndrome. #rdsm #patientchat
ingevdln @ingevdln
#patientchat Inge from Belgium and patient
Richard Zhao @richardzhao
Richard Zhao from Minneapolis. Trying to incorporate #patientvoice into our AI technology solution. Just here to learn. #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@RieOfLetters Delightful patient! I love that. :) #patientchat
Whitney Petit @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
h e a t h e r z e e 🇺🇸⏳🦋 @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
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
A1: Managing EVERYTHING. I have a smart phone but am panicked I will forget something one day. #btsm #pten #patientchat
Lisa Davis Budzinski @lisadbudzinski
@richardzhao Hi Richard! 👋 #Patientchat
Whitney Petit @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 @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
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@AnnePolta That's a biggie too! #patientchat
Lisa Davis Budzinski @lisadbudzinski
T1 Good gravy alive, where to start ✨ #patientchat https://t.co/bbxEIgdZ4L
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
Lisa Davis Budzinski @lisadbudzinski
RT @StellarStudy: The STELLAR Study will be joining today's #patientchat. We're excited to hear from everyone! The STELLAR Study is a clini…
h e a t h e r z e e 🇺🇸⏳🦋 @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
Whitney Petit @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
Rheumatoid Patient @rheumpatient
A1: Chasing up referrals, appointments, letters, test results, etc. So much gets lost/forgotten about in the healthcare system. #patientchat
ingevdln @ingevdln
A1 the energy I need to prove that I am not 'just' a patient #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @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 @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
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
RT @ingevdln A1 the energy I need to prove that I am not 'just' a patient #patientchat
Lisa Davis Budzinski @lisadbudzinski
T1 Managing #chronicillness requires spinning a lot of plates in the air at once all while feeling your worst Causing so much stress #Patientchat https://t.co/bbxEIgdZ4L
Patient Empowerment @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
Alan Brewington @abrewi3010
RT @lisadbudzinski: T1 Managing #chronicillness requires spinning a lot of plates in the air at once all while feeling your worst Causing s…
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
ingevdln @ingevdln
A1 and fear: when everything goes well, and I am doing fine: the axiety for a new flare up of my disease #patientchat
Rie Lopez, MPH @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
h e a t h e r z e e 🇺🇸⏳🦋 @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
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@beth_morton Ew. Sounds terrible! #patientchat
Lisa Davis Budzinski @lisadbudzinski
Even more stress when having chronic illnesses + being a caregiver / Caretaker #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
Rheumatoid Patient @rheumpatient
@abrewi3010 Dual roles are hard. I have a father with dementia who I can't look after as much as I'd like to as I'm ill myself. The guilt eats at you. #patientchat
Rie Lopez, MPH @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
Lisa Davis Budzinski @lisadbudzinski
@AutonomicRN Yesh, and without the salary of a chief officer 😉 #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
Rie Lopez, MPH @RieOfLetters
RT @ingevdln: A1 the energy I need to prove that I am not 'just' a patient #patientchat
Whitney Petit @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
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@AnnePolta Well said. #patientchat
Alan Brewington @abrewi3010
@rheumpatient 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
Rheumatoid Patient @rheumpatient
@beth_morton @patientchat That sucks! #patientchat
ingevdln @ingevdln
A1: having so much plans in your hear but your body can't follow, that causes stress too #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
Lisa Davis Budzinski @lisadbudzinski
T2 Coping mechanisms are abundant but finding the ones that will work for you is the key. It keeps evolving & hopefully tech will bring forth exciting choices! #patientchat https://t.co/xpwufR5Hv6
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 @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
writer sam @writersamr
A1: Anxiety, scanxiety, being unable to concentrate on anything or look forward to good stuff when I'm not well, to name just a few #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
ingevdln @ingevdln
A1: having so much plans in your head but your body can't follow, that causes stress too #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 @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
Lisa Davis Budzinski @lisadbudzinski
@power4patients This is a huge deal! Knowing your illnesses does relieve a lot of unknowns that causes anxiety ✨ #Patientchat
Natrella Bot @natrellabot
RT @RieOfLetters: T2: TBH, I see a therapist. I also schedule #selfcare in my calendar, practice mindfulness, and I meditate. Sometimes I b…
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
Rheumatoid Patient @rheumpatient
A2: I practice yoga, mindfulness, try to see people. #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
Lisa Davis Budzinski @lisadbudzinski
@abrewi3010 @GinaMcGalliard @casepub Laughter is a huge stress reliever in our home as well ✨ Wrve been using it for 30+ yrs & it has never failed us 😉 #patientchat
writer sam @writersamr
A2: Write, drink, cry. This is more of an honest answer than actual advice! Talk to good friends (carefully chosen confidantes). Blog/tweet about it, let it out. #patientchat
Patient Chat @patientchat
Topic 3 (T3:) coming up...https://t.co/n7mTtucD7x #patientchat
Rie Lopez, MPH @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
Lisa Davis Budzinski @lisadbudzinski
RT @Elizabe85727641: T2 seek information from other HC professions, read HC research literature, talk with friend & document possible error…
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
Rie Lopez, MPH @RieOfLetters
RT @lisadbudzinski: @abrewi3010 @GinaMcGalliard @casepub Laughter is a huge stress reliever in our home as well ✨ Wrve been using it for 30…
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
Whitney Petit @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
ingevdln @ingevdln
@rheumpatient A2: same here ... yoga & mindfulness: seems helping me to put things into place and to go back to myself and my breathing #patientchat
Rie Lopez, MPH @RieOfLetters
@abrewi3010 I really want to try FLOAT Therapy. How do you like it? #patientchat
Alan Brewington @abrewi3010
@lisadbudzinski @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
Whitney Petit @CfEpilepsy
RT @patientchat: T3: How can Health Care Professionals (HCPs) help patients cope with stress and empower them? #patientchat
Lisa Davis Budzinski @lisadbudzinski
We believe in doing activities that can help the serotonin levels & the feel good hormones to help relieve stress so it’s easier to tackle those daily tasks of healthcare #patientchat
Annette McKinnon @anetto
A2 To reduce stress I get involved with research, serve on committees/patient groups and promote initiatives to change hlthcare #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
ingevdln @ingevdln
A2: reminding myself that there are days when feeling not okay is okay too, reminding myself that it's the little things https://t.co/mgvjJyYSmF #patientchat
Anne Polta @annepolta
@JotallyWalksome @AutonomicRN Oh not. So sorry to hear this. #patientchat
Patient Empowerment @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 @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 @lisadbudzinski @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
h e a t h e r z e e 🇺🇸⏳🦋 @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
Lisa Davis Budzinski @lisadbudzinski
@abrewi3010 Agree! Acceptance is a huge step forward in #chronicillness #patientchat
Rheumatoid Patient @rheumpatient
A3: Do all the admin stuff for me so I don't get 'lost' in the system. It's draining to be your own PA when ill. #patientchat
Annette McKinnon @anetto
A3 Health professions can encourage patients. An underestimated tool to change people's lives. All good change deserves praise #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 @lisadbudzinski #patientchat
ingevdln @ingevdln
@patientchat Maybe we should ask HCP to answer this question too, sharing our experiences? @IBDAZDelta #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…
h e a t h e r z e e 🇺🇸⏳🦋 @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
Rheumatoid Patient @rheumpatient
@melissarvh That's a good thing to keep in mind. I should try that more often! #patientchat
Lisa Davis Budzinski @lisadbudzinski
Yes! 👏👏👏👏 👇 Up those endorphins 💞 #patientchat https://t.co/WBXcsMctF9
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
h e a t h e r z e e 🇺🇸⏳🦋 @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
Alan Brewington @abrewi3010
RT @lisadbudzinski: @abrewi3010 Agree! Acceptance is a huge step forward in #chronicillness #patientchat
Rie Lopez, MPH @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
ingevdln @ingevdln
@Elizabe85727641 Right ... knowing that we are in this together and that sharing experiences and real listening can make the difference! This was my patientexperience #patientchat
Patient Chat @patientchat
Topic 4 (T4:) coming up...https://t.co/n7mTtucD7x #patientchat
Alan Brewington @abrewi3010
RT @AutonomicRN: @abrewi3010 @lisadbudzinski @GinaMcGalliard @casepub Exactly, you have to keep a sense of humor. If you can't then @abrewi
Katie @katie5280
@RieOfLetters Hi! Welcome to #patientchat!
Rheumatoid Patient @rheumpatient
RT @beth_morton: T3: My stress is best helped when my docs hear me, don't dismiss my concerns or ideas, recognize my anxiety. #patientchat
Whitney Petit @CfEpilepsy
T3: mental wellness/stress management should be apart of treatment in my opinion when diagnosed with any chronic illness. #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@writersamr 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…
writer sam @writersamr
A3: Listen to us, don't talk over us, don't assume stuff. Let us know where to get emotional help at every stage. #patientchat
Rheumatoid Patient @rheumpatient
RT @anetto: A3 Health professions can encourage patients. An underestimated tool to change people's lives. All good change deserves praise…
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
Lisa Davis Budzinski @lisadbudzinski
@richardzhao Very much so. If asking about patients collaborating & sharing in health groups, it truly helps #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@RieOfLetters Oh me, too on the therapist. I want to meditate but don't know how. #patientchat
Rie Lopez, MPH @RieOfLetters
All of this! 👇👇 #patientchat https://t.co/pzNucOeypV
ingevdln @ingevdln
@melissarvh I agree! working together and real listening, not just trying to treat the disease and a patient, but the person as a whole #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @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
Rheumatoid Patient @rheumpatient
RT @AutonomicRN: T3: Always have an emotional self check at each appointment. Sometimes just having someone ask how we are ACTUALLY doing m…
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
Rheumatoid Patient @rheumpatient
RT @RieOfLetters: T3: Health care providers can help patients by acknowledging and validating our concerns. Check in with us and ask how we…
Whitney Petit @CfEpilepsy
RT @AutonomicRN: T3: Always have an emotional self check at each appointment. Sometimes just having someone ask how we are ACTUALLY doing m…
Holleigh Bryan 💚🏴󠁧󠁢󠁷󠁬󠁳󠁿 @HolleighLouise
RT @ingevdln: @melissarvh I agree! working together and real listening, not just trying to treat the disease and a patient, but the person…
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@AutonomicRN @RieOfLetters Same for me! #patientchat
Patient Empowerment @power4patients
@ZHeatherChamp UGH! Sorry to hear that :( All patients should have access to resources to make the best and informed decisions for them #patientchat
Whitney Petit @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…
Rheumatoid Patient @rheumpatient
RT @CfEpilepsy: T3: mental wellness/stress management should be apart of treatment in my opinion when diagnosed with any chronic illness. #…
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@beth_morton I'd read it! Do you share the link publicly? #patientchat
Rheumatoid Patient @rheumpatient
RT @writersamr: A3: Listen to us, don't talk over us, don't assume stuff. Let us know where to get emotional help at every stage. #patientc
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 @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 @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…
ingevdln @ingevdln
@AutonomicRN Do not treat a patient, but a human! #patientchat #empathy #communication & #conTACT
Richard Zhao @richardzhao
RT @lisadbudzinski: @richardzhao Very much so. If asking about patients collaborating & sharing in health groups, it truly helps #patientch
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
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@anetto 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
Rheumatoid Patient @rheumpatient
A4: Good question. I forced myself to go for a walk today. It's so cold, I really didn't want to go out but I feel better for it. #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
Liesbeth Moortgat @MoortgatL
@patientchat Take them seriously. Ask question. And try to understand what patient feels and wants #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.
h e a t h e r z e e 🇺🇸⏳🦋 @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
Rheumatoid Patient @rheumpatient
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…
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
Holleigh Bryan 💚🏴󠁧󠁢󠁷󠁬󠁳󠁿 @HolleighLouise
RT @RieOfLetters: T3: Health care providers can help patients by acknowledging and validating our concerns. Check in with us and ask how we…
Liesbeth Moortgat @MoortgatL
@patientchat Treat them a as humans and not only as patients #patientchat Look further than only their disease
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@RieOfLetters Yes please! #Patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @AutonomicRN: T3: Always have an emotional self check at each appointment. Sometimes just having someone ask how we are ACTUALLY doing m…
Melissa VanHouten @melissarvh
RT @ingevdln: @melissarvh I agree! working together and real listening, not just trying to treat the disease and a patient, but the person…
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…
h e a t h e r z e e 🇺🇸⏳🦋 @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
RT @IBDAZDelta: @patientchat Treat them a as humans and not only as patients #patientchat Look further than only their disease
Lisa Davis Budzinski @lisadbudzinski
@JotallyWalksome @AnnePolta @AutonomicRN 😱 there needs to be a security measure out in place this type of behavior #patientchat
P. F. Anderson @pfanderson
RT @anetto: A2 To reduce stress I get involved with research, serve on committees/patient groups and promote initiatives to change hlthcare…
Patient Chat @patientchat
Topic 5 (T5:) coming up...https://t.co/n7mTtucD7x #patientchat
P. F. Anderson @pfanderson
RT @lisadbudzinski: We believe in doing activities that can help the serotonin levels & the feel good hormones to help relieve stress so it…
h e a t h e r z e e 🇺🇸⏳🦋 @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
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@beth_morton I have horrible insomnia. Horrible! #patientchat
Ayodele J. Alonge @optimisticinfo
RT @lisadbudzinski: We believe in doing activities that can help the serotonin levels & the feel good hormones to help relieve stress so it…
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 @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
Lisa Davis Budzinski @lisadbudzinski
T3 One of my favorite Drs believed in treating body, mind & soul. She was so great at her job as a #gynecologist #patientchat https://t.co/exiPGoY3Ej
h e a t h e r z e e 🇺🇸⏳🦋 @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
P. F. Anderson @pfanderson
RT @lisadbudzinski: T2 Coping mechanisms are abundant but finding the ones that will work for you is the key. It keeps evolving & hopefully…
AutonomicRN© @AutonomicRN
@lisadbudzinski @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 @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 @lisadbudzinski @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
Rheumatoid Patient @rheumpatient
RT @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, n…
P. F. Anderson @pfanderson
RT @AutonomicRN: T3: Always have an emotional self check at each appointment. Sometimes just having someone ask how we are ACTUALLY doing m…
h e a t h e r z e e 🇺🇸⏳🦋 @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…
ingevdln @ingevdln
A4 I didn't have the time for working on my condition (in my opinion). My kids told me a dog would be the key ... yes it is! It has become my stress reducing friend, going for a walk and really good company #patientchat
Holleigh Bryan 💚🏴󠁧󠁢󠁷󠁬󠁳󠁿 @HolleighLouise
RT @IBDAZDelta: @patientchat Take them seriously. Ask question. And try to understand what patient feels and wants #patientchat
AutonomicRN© @AutonomicRN
@ZHeatherChamp @patientchat You're doing great! #patientchat
P. F. Anderson @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
h e a t h e r z e e 🇺🇸⏳🦋 @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
Holleigh Bryan 💚🏴󠁧󠁢󠁷󠁬󠁳󠁿 @HolleighLouise
#Patienchat retweeting this again, to hopefully get a response! https://t.co/72QpsVLhNE
Alan Brewington @abrewi3010
T5 it’s my holiday too. How might we work together so everyone can have fun? #patientchat
CP Nerve Center @Cpnervecenter
RT @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, n…
Lisa Davis Budzinski @lisadbudzinski
@Cpnervecenter It’s hard to get up & make yourself food when your entire body hurts #Patientchat
Mary MACK @MaryOCMack
T5: I let go of trying to make everything wonderful. 🙄 #patientchat
Lisa Davis Budzinski @lisadbudzinski
RT @Elizabe85727641: T5 Let go of negative/judgment vibes/Words, participate in activities that bring forth good feelings based on past exp…
Rheumatoid Patient @rheumpatient
@ingevdln I was thinking of getting a dog for those reasons but my lease won't allow it. #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @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
h e a t h e r z e e 🇺🇸⏳🦋 @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
P. F. Anderson @pfanderson
RT @lisadbudzinski: Even more stress when having chronic illnesses + being a caregiver / Caretaker #patientchat
Lisa Davis Budzinski @lisadbudzinski
@melissarvh This one is a hard one for me. I could only make it to 1 Thanksgiving get together instead of our usual 2 & the remarks can be just as painful #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
P. F. Anderson @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
h e a t h e r z e e 🇺🇸⏳🦋 @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
Whitney Petit @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
Whitney Petit @CfEpilepsy
RT @RieOfLetters: T4: Maintaining a healthy lifestyle (diet, movement, stress relief) are vital to overall health and well-being. I highly…
CP Nerve Center @Cpnervecenter
RT @lisadbudzinski: @Cpnervecenter It’s hard to get up & make yourself food when your entire body hurts #Patientchat
AutonomicRN© @AutonomicRN
This!! Exit plans are a must! #patientchat https://t.co/uA3NUEJiTd
Whitney Petit @CfEpilepsy
RT @RieOfLetters: T4(b): There have been some great chats on healthy behaviors during the holidays. Keep healthy snacks available, drink pl…
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
h e a t h e r z e e 🇺🇸⏳🦋 @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
Claudia William, MD @drcswilliam
RT @AutonomicRN: T3: Always have an emotional self check at each appointment. Sometimes just having someone ask how we are ACTUALLY doing m…
Rheumatoid Patient @rheumpatient
@ZHeatherChamp @richardzhao Never a fan of the FB patient groups. I find them too moany. Prefer the tweetchats - they're more interactive and productive (probably due to character limit). #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
A6: Sometimes, I will say to friends/fam: Check my blog and IG for updates on my health. :) #patientchat
Lisa Davis Budzinski @lisadbudzinski
@Elizabe85727641 Totally agree Liz! Find those good feelings wherever & whenever you can 💞 #patientchat Endorpgins & serotonin levels are key to destressing
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
CP Nerve Center @Cpnervecenter
RT @ZHeatherChamp: @Cpnervecenter I try to walk at least 20 min. minimum every day. Not always, but that's my goal. #patientchat
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@rheumpatient @richardzhao Me too! I was run out of a FB group after DX because I was "too complainy". #patientchat
ingevdln @ingevdln
6: don't try to put on your happy mask when you don't feel fine, be honest and tell them the truth in an honest way #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
Whitney Petit @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 @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
h e a t h e r z e e 🇺🇸⏳🦋 @ZHeatherChamp
@Cpnervecenter YES! Mine is charging thx for the reminder to get it on! #patientchat
Whitney Petit @CfEpilepsy
RT @patientchat: T6: How can patients handle all the questions they may get about their illness during the holidays from family and friends…
Rheumatoid Patient @rheumpatient
@lisadbudzinski @melissarvh Unfortunately, people aren't very understanding about these things. They take it personally as a slight against them, rather than you not being up to it. #patientchat
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
@lisadbudzinski 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 @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
Whitney Petit @CfEpilepsy
I’m so guilty of doing this 🤦🏾‍♀️ #patientchat https://t.co/3FLogIyW6U
Lisa Davis Budzinski @lisadbudzinski
T6 Put together an elevator pitch type of answer. You are the one in charge of the conversation. #patientchat https://t.co/y6Rm47H8uS
myhealthapps @my_health_apps
RT @anetto: A2 To reduce stress I get involved with research, serve on committees/patient groups and promote initiatives to change hlthcare…
Rheumatoid Patient @rheumpatient
@Cpnervecenter I wish people would ask that. On the rare occasion anyone ever has, I've been so taken aback my mind goes blank as to what they can help me with. #patientchat
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
ingevdln @ingevdln
@richardzhao @melissarvh I am very aware of all the negative and horror stories on FB groups, where patients advise each other in very negative ways are share wrong information. Twitter is a better platform for me #patientchat
Lisa Davis Budzinski @lisadbudzinski
@rheumpatient @melissarvh You’re so right. I’m constantly telling my neighbors, please don’t take it personally. #patientchat
Katie @katie5280
@AutonomicRN You are so right! Thank you for saying this. #patientchat
Whitney Petit @CfEpilepsy
RT @lisadbudzinski: T6 Put together an elevator pitch type of answer. You are the one in charge of the conversation. #patientchat https://…
Rie Lopez, MPH @RieOfLetters
T6: Good question! Still doing badly with this for extended family. https://t.co/QcxEInlrZs
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
ingevdln @ingevdln
@melissarvh @richardzhao True, that's why I like Twitter ... HCP and patients come together to share knowledge and experience in much more positive ways #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 @teaminspire
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 @RieOfLetters
This is awesome! #patientchat https://t.co/Bi5dVLEemV
CP Nerve Center @Cpnervecenter
@rheumpatient 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
Rheumatoid Patient @rheumpatient
@melissarvh @richardzhao If they're moderated that's all well and good. It's when no one is keeping an eye on what is being said, so much misinformation gets spread fast! #patientchat
CP Nerve Center @Cpnervecenter
RT @rheumpatient: @Cpnervecenter I wish people would ask that. On the rare occasion anyone ever has, I've been so taken aback my mind goes…
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
Melissa VanHouten @melissarvh
RT @Cpnervecenter: T5 SHOP ONLINE! And Let people help when they ask if they can do anything for you. #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
Lisa Davis Budzinski @lisadbudzinski
@AutonomicRN Or when family don’t even take the time to understand your diagnosis because it’s something they’ve never heard of so it couldn’t possibly exist. That’s why it’s called a rare disease 😉 #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
@lisadbudzinski BINGO #patientchat
Rheumatoid Patient @rheumpatient
A6: I rarely get asked. I look fine, so people generally assume I am. #invisibleillness #patientchat
Whitney Petit @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
Lisa Davis Budzinski @lisadbudzinski
@richardzhao @melissarvh You’d think it would be possible given the millions of Drs & pts there are ✨ but alas, sometimes it’s all about the “how” #patientchat
Rie Lopez, MPH @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…
Whitney Petit @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
ingevdln @ingevdln
@abrewi3010 @HolleighLouise I once had the opportunity to join a lecture and bring my imput from my point of view as a patient. Very interesting for both: patients and me! #patientchat
AutonomicRN© @AutonomicRN
@CfEpilepsy The once a year check in family/friends... Grr #patientchat
Anne Polta @annepolta
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…
Rheumatoid Patient @rheumpatient
@RieOfLetters I'm rubbish with this. I need to get better at saying what I want/need. #patientchat
Richard Zhao @richardzhao
@lisadbudzinski @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
Lisa Davis Budzinski @lisadbudzinski
CT: You are the one in charge of your condition. Get to know it thoroughly. And never let anyone take your Happy away✨ #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.
Rheumatoid Patient @rheumpatient
@Cpnervecenter I think that's why people don't offer. I've always done everything for myself. #patientchat
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: @lisadbudzinski @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
Whitney Petit @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
Lisa Davis Budzinski @lisadbudzinski
Everyone have a wonderful weekend no matter where you are ✨#PatientChat
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
Whitney Petit @CfEpilepsy
RT @lisadbudzinski: CT: You are the one in charge of your condition. Get to know it thoroughly. And never let anyone take your Happy away✨…
Whitney Petit @CfEpilepsy
RT @katie5280: @patientchat CT: It's always wonderful to hear and learn from others in the #patientchat community! Everyone has ideas and t…
Rheumatoid Patient @rheumpatient
@melissarvh @richardzhao I find tweetchats such as #whywedoresearch good for this. #patientchat
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
CP Nerve Center @Cpnervecenter
RT @HolleighLouise: @abrewi3010 Oo fantastic thank you very much. Out of interest, how do you recommend I ensure that the patients feel val…
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
Rheumatoid Patient @rheumpatient
@AutonomicRN Opposite problem to me! #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
Rheumatoid Patient @rheumpatient
RT @CfEpilepsy: @AutonomicRN My frustration comes from no one contacts me outside of the holidays to see “how I’m managing” but finds a sud…
ingevdln @ingevdln
@abrewi3010 @HolleighLouise You are right, we need to work on a same language! that can only be done when we see each other as humans not as patients vs HCP ... I am grateful to have found a fantastic team when it comes to my disease #empathy and #authenticity is the key #patientchat https://t.co/hUNnCCXSQF
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
Rheumatoid Patient @rheumpatient
@MaryOCMack Sometimes I do think they ask to appear that they care but are not actually interested in the answer. A bit like the generic "how are you?" question when you see people. #patientchat
Alan Brewington @abrewi3010
RT @ingevdln: @abrewi3010 @HolleighLouise You are right, we need to work on a same language! that can only be done when we see each other a…
Holleigh Bryan 💚🏴󠁧󠁢󠁷󠁬󠁳󠁿 @HolleighLouise
RT @ingevdln: @abrewi3010 @HolleighLouise You are right, we need to work on a same language! that can only be done when we see each other a…
#patientchat content from Twitter.