#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.

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Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Patient Chat @patientchat
Hi #patientchat’ers! I’m Kara from @power4patients and I’m looking forward to today’s chat and the holiday season 😃
Patient Chat @patientchat
Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Carly Flumer (she/her) @carlyflumer
@patientchat I’m Carly, a #thyca survivor. :) #patientchat
Patient Chat @patientchat
Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat
mary @zebrafinch
RT @patientchat: Join us for an Empowered #patientchat on "Holiday Hacks: Join us for an Empowered #patientchat on "Holiday Hacks: Tips for Coping with Chronic Illness During the Holidays” on Friday 11/1 10amPT | 1pmET https://t.co/w24y6Krc3s https://t.co/WKuvLqMFR8
mary @zebrafinch
RT @patientchat: Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat
Patient Chat @patientchat
You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/5D9FyEMfSH #patientchat
mary @zebrafinch
RT @patientchat: Hi #patientchat’ers! I’m Kara from @power4patients and I’m looking forward to today’s chat and the holiday season 😃
Heather McCullen @H_SalemOaks
Hi #patientchat Heather from outside of Ann Arbor. I'm part of @SalemOaks
Patient Chat @patientchat
Today's #patientchat topic is Holiday Hacks: Tips for Coping with Chronic Illness During the Holidays https://t.co/6Br3n5fdah
Patient Chat @patientchat
I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat #patientchat
Patient Chat @patientchat
T1: How do you navigate exhaustion, emotions and wanting to make the holidays special? #patientchat https://t.co/bbXqsoplOr
Patient Empowerment Network @power4patients
RT @patientchat: T1: T1: How do you navigate exhaustion, emotions and wanting to make the holidays special? #patientchat https://t.co/bbXqsoplOr
Patient Empowerment Network @power4patients
Hi @H_SalemOaks, @carlyflumer, and @flareuphope! Looks like we have a small group for today’s #patientchat😊
Heather McCullen @H_SalemOaks
T1: We don't travel or commit to anything holiday related. I'd much rather visit my family when the weather is nice and not deal with the added stress of holidays. #Patientchat
Carly Flumer (she/her) @carlyflumer
T1: this will only be my 2nd holiday season while in remission, but I really try to make the best of it. An uncle of mine who comes to visit during Thanksgiving had h&c cancer, so we’re able to “bond” over that.#patientchat
Melissa VanHouten @melissarvh
I've learned 2 let go of my own & others' expectations of perfection. I accept that, due 2 the physical effects of my #Gastroparesis, I can't do everything I used to. I pick & choose what's most important 2 me & rest in-between events-& I don't feel guilty abt that. #patientchat
Carly Flumer (she/her) @carlyflumer
T1: Also, 2 years ago, I spent the weeks before Thanksgiving in treatment, so it’s “nice” to be able to look back and see how far I’ve come. Usually people are tired after all the food, so that blends in w/ my exhaustion. ;) #patientchat
mary @zebrafinch
RT @patientchat: T1: T1: How do you navigate exhaustion, emotions and wanting to make the holidays special? #patientchat https://t.co/bbXqsoplOr
mary @zebrafinch
RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat
mary @zebrafinch
RT @patientchat: You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/5D9FyEMfSH #patientchat
Carly Flumer (she/her) @carlyflumer
@flareuphope Yes! Love this! What decorations make you happy is enough. No need to go all out :) #patientchat
Patient Empowerment Network @power4patients
@flareuphope “Be a human and try to share some love” - LOVE THAT! #patientchat
Patient Chat @patientchat
Topic 2 (T2:) coming up… https://t.co/meZAyGbiVH #patientchat
Patient Chat @patientchat
T2: Everyone is so busy at this time of year, but you might need help. How do you find the words to ask for the help you need? #patientchat https://t.co/MIPemhZKJI
Mister J.B. 🔭𓆏 🌊 @negronjb
RT @patientchat: T2: T2: Everyone is so busy at this time of year, but you might need help. How do you find the words to ask for the help you need? #patientchat https://t.co/MIPemhZKJI
Mister J.B. 🔭𓆏 🌊 @negronjb
RT @patientchat: T1: T1: How do you navigate exhaustion, emotions and wanting to make the holidays special? #patientchat https://t.co/bbXqsoplOr
mary @zebrafinch
RT @patientchat: T2: T2: Everyone is so busy at this time of year, but you might need help. How do you find the words to ask for the help you need? #patientchat https://t.co/MIPemhZKJI
Heather McCullen @H_SalemOaks
T2: Usually by having a dramatic meltdown because one, small thing went wrong (is this not the right answer?) #patientchat
Carly Flumer (she/her) @carlyflumer
T2: I don’t think anyone can do everything on their own around the holidays. #human But if you plan on having family for dinner, for example, ask them to bring a dish or 2. Ask the little ones to help clean up by asking them to “play a game.” #patientchat
Bingle @TheBingle
Great question! And what if the HCP's don't help?
Patient Chat @patientchat
@H_SalemOaks HAHA I love this answer! :) #patientchat
Patient Chat @patientchat
#patientchat
Carly Flumer (she/her) @carlyflumer
@GinaMcGalliard @patientchat Ughh, yes! And I don’t appreciate people asking me why I’m tired all the time AND it being the same people. #patientchat #chronicdisease
Melissa VanHouten @melissarvh
Perfectly acceptable & polite 2 make others aware of illness-related needs. I'm not shy. Be honest & open abt rqmts/wants while still presenting them in respectful & non-demanding manner. Most people want you 2 be comfortable; they just don't know what that entails. #patientchat
Patient Chat @patientchat
Topic 3 (T3:) coming up… https://t.co/meZAyGbiVH #patientchat
Patient Chat @patientchat
T3: What advice would you give to someone who wants to support a patient or care partner during this time? #patientchat https://t.co/birEoHnKyT
Carly Flumer (she/her) @carlyflumer
T3: Ask how you can help! Ask how we are feeling. Be a comfort to us emotionally. #patientchat
mary @zebrafinch
RT @patientchat: T3: T3: What advice would you give to someone who wants to support a patient or care partner during this time? #patientchat https://t.co/birEoHnKyT
Mary MACK @MaryOCMack
T3 Help with housecleaning or find cleaning help. That’s a big issue for me during holiday time. Anytime really #patientchat
Melissa VanHouten @melissarvh
We don't expect nor want you 2 give up the traditions & events you've always enjoyed at this time of year. We want sensitivity 2 our plight. Offer alternatives & minor accommodations-like allowing us 2 bring our own food, leave/arrive early, secluded spot 4 us, etc. #patientchat
Heather McCullen @H_SalemOaks
T3: Easier said than done ... but offer to help in ways that actually reduce the burden. For example: If your friend really likes to cook, offering to cook might take away a part they're looking forward to not a burden. Maybe offer to buy groceries instead. #patientchat
Sommer Consulting @SommerConsults
Great #PatientChat going on right now about how to support people with #chronicillness during the holidays.💡
Carly Flumer (she/her) @carlyflumer
@MaryOCMack Yes! Chronic exhaustion and pain don’t mesh with everyday life. #patientchat #cancersucks
Patient Chat @patientchat
@flareuphope Thanks for joining! Have a great weekend :) #patientchat
Patient Chat @patientchat
@zebrafinch Hi! If you visit our event listing (https://t.co/meZAyGbiVH), you'll be able to see all the topic questions so you know what is coming up! #patientchat
Patient Chat @patientchat
Topic 4 (T4:) coming up… https://t.co/meZAyGbiVH #patientchat
Patient Chat @patientchat
T4: What are some tips for traveling over the holidays? #patientchat https://t.co/izFuK2THxr
Heather McCullen @H_SalemOaks
@MaryOCMack Also, if you go to someone's house and it's a mess, maybe don't comment on it. They know and they're probably already stressed about it. #patientchat
Patient Empowerment Network @power4patients
RT @patientchat: T4: T4: What are some tips for traveling over the holidays? #patientchat https://t.co/izFuK2THxr
Carly Flumer (she/her) @carlyflumer
@GinaMcGalliard @patientchat Yes! Joining these chats here on Twitter is a great way to meet people, as well as online support groups (@teaminspire) and in-person groups (ex. @_OurOdyssey_ , @ThyCaInc). #patientchat
Carly Flumer (she/her) @carlyflumer
T4: Take breaks when you need them. Pack snacks and a book. Let someone else do the driving. #patientchat
Our Odyssey @_OurOdyssey_
RT @carlyflumer: @GinaMcGalliard @patientchat Yes! Joining these chats here on Twitter is a great way to meet people, as well as online support groups (@teaminspire) and in-person groups (ex. @_OurOdyssey_ , @ThyCaInc). #patientchat
Alan Brewington @abrewi3010
A4 pain is temporary, memories last. I’m willing to sacrifice pain control for holiday adventure #patientchat
Melissa VanHouten @melissarvh
Break up travel into a few shorter segments if possible. Budget plenty of extra time 4 rest stops; bring “safe” foods/nutrition along, pack extra clothing in case of accidents, & make certain you have ample supplies & doses of medication (& keep those meds w/you). #patientchat
Patient Empowerment Network @power4patients
@abrewi3010 Hi Alan! Hope you’re doing well today! #patientchat
Carly Flumer (she/her) @carlyflumer
@melissarvh This is so true about medication. When working at a hospital, I had quite a few patients who forgot their meds and had to have them called into a local pharmacy. I feel it’s just more hassle! #patientchat
Patient Chat @patientchat
Topic 5 (T5:) coming up… https://t.co/meZAyGbiVH #patientchat
Melissa VanHouten @melissarvh
Mostly, my family & friends come to me now rather than asking me to travel. Makes it a lot easier & less stressful for everyone. But not all families are willing or able to do that. I go when I can travel & stay home when I can't. #patientchat
Alan Brewington @abrewi3010
@power4patients Hi! I never know anymore which ways is up but it seems to work for me. How are you? #patientchat
Patient Chat @patientchat
T5: People don’t always know what to say or ask about chronic illness. What are some things to say and not say? #patientchat https://t.co/XZrWvqN74B
Alan Brewington @abrewi3010
A5 just start talking, the conversation will grow organically if everyone is included and treated as equals. #patientchat
Patient Empowerment Network @power4patients
@abrewi3010 Haha that’s all that counts! Doing pretty well today, it’s finally feeling like fall here in Charlotte #patientchat
Patient Empowerment Network @power4patients
T5: Our friend @JennLessinger, wrote this 'What Not to Say When You Don’t Know What to Say' that talks exactly about this https://t.co/ZIFIHb5dp5 #patientchat https://t.co/NG6tB4gGNi
Melissa VanHouten @melissarvh
Feel free to ask me anything but don't ASSUME you know what I want or need. And for the love of all that is good, if I say I cannot do something b/c of my illness, respect that, & don't argue w/me abt how or why you think I can/should be able to. I know my illness. #patientchat
Patient Chat @patientchat
RT @melissarvh: Feel free to ask me anything but don't ASSUME you know what I want or need. And for the love of all that is good, if I say I cannot do something b/c of my illness, respect that, & don't argue w/me abt how or why you think I can/should be able to. I know my illness. #patientchat
Alan Brewington @abrewi3010
@power4patients We had a 30 minute snow storm on Monday. Boise has entered fall, finally!!! I was tired of the heat. #patientchat
Carly Flumer (she/her) @carlyflumer
T5: Please don’t ask why we’re tired all the time. Help us to ease both our mental anguish and physical pain. #patientchat
Patient Chat @patientchat
@ZHeatherChamp Hi Heather! Yes, we're talking about "Holiday Hacks: Tips for Coping with Chronic Illness During the Holidays" and on T5 :) #patientchat https://t.co/meZAyGbiVH
Lillian Lake - Host of #SoulNestingChat @llake
RT @melissarvh: Feel free to ask me anything but don't ASSUME you know what I want or need. And for the love of all that is good, if I say I cannot do something b/c of my illness, respect that, & don't argue w/me abt how or why you think I can/should be able to. I know my illness. #patientchat
Heather McCullen @H_SalemOaks
RT @power4patients: T5: T5: Our friend @JennLessinger, wrote this 'What Not to Say When You Don’t Know What to Say' that talks exactly about this https://t.co/ZIFIHb5dp5 #patientchat https://t.co/NG6tB4gGNi
Carly Flumer (she/her) @carlyflumer
@melissarvh Love this! Don’t assume anything about how we’re doing or how we’re “supposed” to be doing until you’re in our shoes. #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
Rev. Dr. Stacey Simpson Duke @revdrduke
@patientchat T5: If I've already answered the question "How are you doing?" please don't follow up with, "How are you really doing?" Either I really am doing just as well as I said, or I'm not but don't want to talk about it. I don't owe you my emotional vulnerability. #patientchat
Mister J.B. 🔭𓆏 🌊 @negronjb
RT @patientchat: T5: T5: People don’t always know what to say or ask about chronic illness. What are some things to say and not say? #patientchat https://t.co/XZrWvqN74B
Heather McCullen @H_SalemOaks
RT @revdrduke: @patientchat T5: @patientchat T5: If I've already answered the question "How are you doing?" please don't follow up with, "How are you really doing?" Either I really am doing just as well as I said, or I'm not but don't want to talk about it. I don't owe you my emotional vulnerability. #patientchat
Patient Chat @patientchat
RT @revdrduke: @patientchat T5: @patientchat T5: If I've already answered the question "How are you doing?" please don't follow up with, "How are you really doing?" Either I really am doing just as well as I said, or I'm not but don't want to talk about it. I don't owe you my emotional vulnerability. #patientchat
Heather 🇺🇸 @ZHeatherChamp
@patientchat A5: Gah if my friends would just say hello! A random text or call means so much! #PatientChat
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat. I will tweet out the transcript about 15 minutes past the hour
Heather 🇺🇸 @ZHeatherChamp
A3: To make sure the SUPPORT GIVER takes and makes time for themselves. So important! My mom never took a break and I TOLD her to! #patientchat #btsm #pten #thyca
Heather 🇺🇸 @ZHeatherChamp
RT @patientchat: T1: T1: How do you navigate exhaustion, emotions and wanting to make the holidays special? #patientchat https://t.co/bbXqsoplOr
Patient Chat @patientchat
The next Empowered #patientchat will be Friday, November 15th at 1pm ET | 10am PT Hope to see you there! https://t.co/LfTofRVkty
Lillian Lake - Host of #SoulNestingChat @llake
@patientchat T5 The key is people don't know they're being awkward. My rule is don't state the obvious. "So you have ______, that must be hard". There's nowhere to go with that statement. #patientchat
Alan Brewington @abrewi3010
CT the holidays are hard enough without getting into “woke” battles. I would rather advocate than start a battle with someone who’ means no disrespect but choose bad language because they are tired too. More fun, less worry!!! #patientchat
Heather 🇺🇸 @ZHeatherChamp
@patientchat A2: Maybe trying to write your words may help? I write a lot; my emotions and notes for all my doctors. 😑🤨😉😊 #patientchat
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Lillian Lake - Host of #SoulNestingChat @llake
@GinaMcGalliard @patientchat I think that's on the mark. Since my illness, I've definitely learned who are my real friends. #patientchat
Lillian Lake - Host of #SoulNestingChat @llake
@revdrduke @patientchat That's so well put. In reverse, I try for "what are you feeling?" Often times people can't put into words how they are doing. At least I feel that way, so I try to consider that for others. #patientchat
Lillian Lake - Host of #SoulNestingChat @llake
@GinaMcGalliard @patientchat I love that. Learning to be conservative is a good point. You can always do more, but the reverse is if you've overdone, it can make you feel bad on every level. #patientchat
Lillian Lake - Host of #SoulNestingChat @llake
@patientchat T4 I think about delays because it's hard to find food I can eat. I buy snack-size pkgs to keep in my purse or overnight. I try to stay true to keeping balanced. So I cook and freeze now for guests so Thanksgiving and Christmas are lighter. I avoid alcohol. #patientchat
Lillian Lake - Host of #SoulNestingChat @llake
@patientchat T4 Learn that "no" is a complete statement. #patientchat
Melissa VanHouten @melissarvh
RT @patientchat: Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
#patientchat content from Twitter.