#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Patient Chat @patientchat 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 |
| @ I'm Jacklyn- mom to 8 month old baby girl and I love coffee, crunching leaves and dogs. I have ulcerative colitis and am in remission currently. #patientchat | |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/5D9FyEMfSH #patientchat |
 | 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: 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 |
| @ Yes! Rest between events is so important to keep from getting run down. #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 |
 | J.B. et al., ✍️🏻 @negronjb RT @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 n… |
| J.B. et al., ✍️🏻 @negronjb RT @patientchat: T1: How do you navigate exhaustion, emotions and wanting to make the holidays special? #patientchat https://t.co/bbXqsoplOr |
| 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 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 [REDACTED USER] 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: 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 sup… |
 | 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… |
| 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… |
| Heather McCullen @H_SalemOaks RT @power4patients: T5: Our friend @JennLessinger, wrote this 'What Not to Say When You Don’t Know What to Say' that talks exactly about th… |
| 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 |
| J.B. et al., ✍️🏻 @negronjb RT @patientchat: T5: People don’t always know what to say or ask about chronic illness. What are some things to say and not say? #patientch… |
| Heather McCullen @H_SalemOaks RT @revdrduke: @patientchat T5: If I've already answered the question "How are you doing?" please don't follow up with, "How are you really… |
| Patient Chat @patientchat RT @revdrduke: @patientchat T5: If I've already answered the question "How are you doing?" please don't follow up with, "How are you really… |
 | 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: 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.