#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat You can find the topics we’ll cover on today’s Empowered #patientchat here: https://t.co/DqIn5bc5vT |
| 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 @ADanGrenier Thanks for saying hi! Hope you join us next time 😊 #patientchat |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
 | Simply Kristy @SimplyKristyD Hi Everyone 👋 I'm Kristy, a mom, wife and #raredisease patient. I'm also the founder of @cshealthapp and am a patient advocate #patientchat |
| Patient Chat @patientchat I’m Nykema from @power4patients. I’m looking forward to today’s #patientchat plus I'm happy it's Friday! 😊 |
 | Diverse Health Hub @DHealthhub @patientchat Hi, I’m Jemela with Diverse Health Hub. Happy to be participating in #patientchat! #patientchat |
 | Carly Flumer (she/her) @carlyflumer Hey, I’m Carly, an #AYA #thyca patient who’s very excited about this topic. 😊 #patientchat |
 | Seth Rotberg @Srotberg15 Hi everyone! It has been awhile but figured I would pop in and say hello. I’m a patient advocate and community connector from Boston. #patientchat |
| Patient Chat @patientchat @DHealthhub Hi Jemela, happy you can join us today! #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| Simply Kristy @SimplyKristyD @carlyflumer It's nice to see you here Carly 😊 #patientchat |
| Patient Chat @patientchat @SimplyKristyD @cshealthapp Hi Kristy, happy to have you here today! #patientchat |
 | Jeff Dubin @Power2Patient @patientchat #patientchat I'm a pharmaceutical marketing researcher who publishes a #patientempowerment blog called #PowertothePatient. Glad to be here. |
| 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 |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/XO3X3JyAcV #patientchat |
| Jeff Dubin @Power2Patient @Srotberg15 #patientchat Hi Seth (Jeff Dubin here) |
| Simply Kristy @SimplyKristyD @Power2Patient @patientchat Hi Jeff. Looking forward to chatting with you #patientchat |
| Diverse Health Hub @DHealthhub RT @patientchat: You can view our Chat Etiquette and Guidelines at https://t.co/XO3X3JyAcV #patientchat |
 | Adam Johnson - DadVocate @RareDiseaseDad @patientchat Hi everyone. I'm Adam, a #RareDisease patient trying my best to advocate while being a Dad...a DadVocate. Looking forward to today's #patientchat. #MentalHealth & #SelfCare are such important topics! (Yes, this statement doubles as a reminder to myself as well🙂) |
| Patient Chat @patientchat @darlakbrown @power4patients @dremilylu So happy you’re here today Darla 🤗 #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is "Let’s Talk Mental Health: How are you doing?" https://t.co/DqIn5bc5vT |
| Patient Chat @patientchat @carlyflumer Hi Carly, hope your week went well! #patientchat |
 | Inspire @InspireIsHealth RT @patientchat: Today's #patientchat topic is "Let’s Talk Mental Health: Today's #patientchat topic is "Let’s Talk Mental Health: How are you doing?" https://t.co/DqIn5bc5vT |
| Patient Chat @patientchat @Srotberg15 Hi Seth! Happy to have you joining us today. #patientchat |
 | Laurie Reed @LReedptadvocate @patientchat Hi! Laurie, patient advocate - glad to be hear for the conversation. #patientchat |
 | Patient Worthy @PatientWorthy Hi #patientchat! We are Patient Worthy, and we help to amplify voices in the #raredisease space. How are you all doing today? |
| Inspire @InspireIsHealth Hello to all in the #patientchat community, John Novack here from Inspire. |
| Simply Kristy @SimplyKristyD @RareDiseaseDad @patientchat Hey Adam! How've you been keeping? #patientchat |
| Jeff Dubin @Power2Patient @SimplyKristyD @patientchat Likewise, Kristy #patientchat |
| Diverse Health Hub @DHealthhub @patientchat Physically, I'm fatigued, mentally, I'm feeling well, but a bit overwhelmed. #patientchat |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Hi all. I'm Shereese from Maryland. I've been a patient advocate for 15 years, a health Tech pro for about the same. I recently started my own battle with a condition, & I've really missed this chat. #patientchat https://t.co/yCseJV4p73 |
| Patient Chat @patientchat @RareDiseaseDad Hi Adam, thanks for joining us today! Hoping you find some time for self-care this weekend. #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 |
 | Patient Empowerment Network @power4patients Happy Friday everyone! Kara from @power4patients here and excited for today's #patientchat |
| Patient Worthy @PatientWorthy @power4patients Happy Friday! #patientchat |
| Simply Kristy @SimplyKristyD @ShereeseMayMba It's nice to see you here, Shereese 😊 #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @LReedsbooks @patientchat Hi Laurie! Good to see you here. Hope you're doing well! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @DHealthhub @patientchat Hi Jemela! Hope you're doing well. Looking forward to #patientchat here as well. |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Patient Chat @patientchat @ShereeseMayMba Hi Shereese! Beautiful picture btw. So happy you can join us today! #patientchat |
| Seth Rotberg @Srotberg15 @RareDiseaseDad @patientchat Nice to see you here Adam! Hope you’re doing well these days. #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @SimplyKristyD Hi. How are you? #patientchat https://t.co/dGiFr5jAlv |
| Patient Chat @patientchat T1: How are you feeling today? Physically and mentally? #patientchat https://t.co/lmTQw5Tp44 |
| Patient Chat @patientchat @teaminspire Hi John, thanks for joining us today! #patientchat |
| Laurie Reed @LReedptadvocate @RareDiseaseDad @patientchat Thanks Adam! Good to see you as well. Glad you are here today! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @Srotberg15 Hey Seth! Great to see you here. Hope you're doing well. Also wondering how you're feeling about the Super Bowl...anti-Tampa Bay, or pulling for your old pal Tom Brady? I'm left wishing my 49ers would've made a bigger attempt to land him last year! #patientchat |
| Carly Flumer (she/her) @carlyflumer T1: Physically okay, mentally drained, always tired. Life of #thyca 🦋 #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T1: I’m spent. Physically, emotionally, & mentally. #patientchat |
| Seth Rotberg @Srotberg15 T1: The cold weather in Boston tends to make things tougher mentally but surprisingly I’m doing fairly well today since I start each morning with journaling and meditation. #patientchat |
| Patient Chat @patientchat Happy you’re feeling a little better. Don’t forget to add #patientchat :) |
 | ROHHADwarrior @ROHHAD_warrior @patientchat T1: physically I am feeling great. Mentally, I am drained. I have been busy all week with work. #patientchat |
| Patient Worthy @PatientWorthy A1: Physically and mentally okay for the time being, although a bit tired. #patientchat https://t.co/78BrYSOciL |
| Simply Kristy @SimplyKristyD @PatientWorthy Great use of the gif :) #patientchat |
| Patient Chat @patientchat (T2:) coming up..... #patientchat |
| Seth Rotberg @Srotberg15 @RareDiseaseDad It’s tough to root against Tom Brady for everything he did for the Pats. I’m just hoping for a good, competitive game. I was surprised at the 49ers this year 😯 #patientchat |
| Diverse Health Hub @DHealthhub @patientchat T1 I agree with All the above!! #patientchat |
| Patient Worthy @PatientWorthy @SimplyKristyD Thank you! We love a good gif every now and then. #patientchat |
| Diverse Health Hub @DHealthhub RT @patientchat: T1: T1: How are you feeling today? Physically and mentally? #patientchat https://t.co/lmTQw5Tp44 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T1 I'm feeling good and mentally stable. That's good for a Friday. #patientchat https://t.co/Ial4oSdfli |
| Patient Chat @patientchat @scrufton73 @FibroFlutters Happy you made it this time!! #patientchat |
| Patient Chat @patientchat T2: Is anything worrying you at the moment? #patientchat https://t.co/F6UX4PerZ9 |
| Laurie Reed @LReedptadvocate @patientchat T1. Good question -- probably one we should be asking each other more often. It's so variable these days isn't it? Today, I'm alright. A bit anxious about managing my time this morning -- want to be here but have a commitment halfway through the chat. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @scrufton73 @FibroFlutters Hi Carole! Hope all is well. Good to see you here! #patientchat |
| Patient Worthy @PatientWorthy @darlakbrown We think that makes sense, especially in such an unprecedented time we're living through. #patientchat |
| Simply Kristy @SimplyKristyD T1: I am feeling good today. It has been a rough few weeks so I am grateful for the improvement in my health both physically and mentally today. #patientchat |
| Diverse Health Hub @DHealthhub @patientchat T2: I'm really worried about fatigue & the weather forecast adversely affecting my Sickle cell health for the worse. #patientchat |
| Jeff Dubin @Power2Patient T1: At an impasse trying to help my wife figure out what's causing her to feel so run down all the time. It's hard for me to maintain a positive attitude. #patientchat |
| Patient Chat @patientchat @SimplyKristyD Happy you’ve been experiencing some improvement Kristy! #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T2 I aways wory before my check-ups; I have 2 approaching. But my irrational fears don't hurt anyone. I'm good. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @darlakbrown Totally relate to this, Darla! Trying to process what's going on in the world is such a challenge on it's own, then we add what's happening in our own lives/the lives of those we know & love, & it's a lot! Thank you for sharing. You're not alone! #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @SimplyKristyD I can't complain. #PatientChat |
| Seth Rotberg @Srotberg15 T2: As a worrier, there are always things worrying me 🤣 but on a serious note, I sometimes worry about how other people perceive me as I pressure myself to be well-liked by everyone (knowing this isn’t possible and working on improving this mindset). #patientchat |
| Patient Chat @patientchat @PatientWorthy @darlakbrown Yes, that’s such a relatable feeling! #patientchat |
| Jeff Dubin @Power2Patient @darlakbrown T1 I think I'm beyond trying to figure out what's going on the world. Too difficult! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @ShereeseMayMba Love to see that, Shereese! 💚 #patientchat |
| Seth Rotberg @Srotberg15 @aggievic14 #patientchat https://t.co/cdCMYgscSH |
| Simply Kristy @SimplyKristyD T2: My kids are set to resume in person learning on Monday so while I am so happy they get to return to school I am concerned about the increased exposure to the virus. It is so tough to balance what is best for them mentally vs potential risk to my physical health. #patientchat |
| Patient Chat @patientchat (T3:) coming up..... #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T2 - EVERYTHING - which is part of the problem. Okay, deep breaths. #patientchat |
 | Spencer Health Solutions @spencerhealth Greetings all! It's always great to drop in on the #patientchat! Happy Friday! |
| Patient Chat @patientchat T3: Are you actively practicing self-care? If so, how? #patientchat https://t.co/fxy3tu7mGp |
| Inspire @InspireIsHealth RT @patientchat: T3: T3: Are you actively practicing self-care? If so, how? #patientchat https://t.co/fxy3tu7mGp |
| Patient Chat @patientchat @Srotberg15 Seth, this is so relatable! I, myself am a fellow worrier 🤣 but constantly working to change my thinking #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T2: Yes. #patientchat |
| Jeff Dubin @Power2Patient @patientchat T3: Going outside and appreciating nature. #patientchat |
| Diverse Health Hub @DHealthhub @patientchat T3: Yes, I'm practicing self-care by doing things I enjoy, staying virtually connected with friends, listening to music & attending my #SickleCell support group with friends is my happy place! #patientchat |
| Diverse Health Hub @DHealthhub RT @patientchat: T3: T3: Are you actively practicing self-care? If so, how? #patientchat https://t.co/fxy3tu7mGp |
| Carly Flumer (she/her) @carlyflumer @Srotberg15 This is my life. #patientchat |
| Patient Empowerment Network @power4patients T3: Practice self-care through meditation with our 15-minute expert guided mindfulness meditation practice sessions every Monday and Friday at 12pm ET: https://t.co/BQzDmpwnmj #patientchat https://t.co/AbSLGqhu4g |
| Laurie Reed @LReedptadvocate @patientchat Gotta run. Will check in on the chat later. Take care everyone! #patientchat |
| Patient Worthy @PatientWorthy T3. Taking walks around the block when possible. Hot showers. Face masks. And a good cup of coffee (or two) in the morning. #patientchat |
| Patient Chat @patientchat @DHealthhub Happy you’ve found a happy place! And yes I can relate, listening to music is also part of my happy place! #patientchat |
| Inspire @InspireIsHealth RT @power4patients: T3: T3: Practice self-care through meditation with our 15-minute expert guided mindfulness meditation practice sessions every Monday and Friday at 12pm ET: https://t.co/BQzDmpwnmj #patientchat https://t.co/AbSLGqhu4g |
| Patient Chat @patientchat @LReedsbooks Thanks for checking in! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T2b: That one word "yes" is a bit snarky. Not meant to be dismissive. Just trying to say that for me, there's plenty I'm concerned about...me/my health, my family, my home, my city, my state, my country, the world. It's a mess in a lot of places! #patientchat |
| Spencer Health Solutions @spencerhealth RT @patientchat: T3: T3: Are you actively practicing self-care? If so, how? #patientchat https://t.co/fxy3tu7mGp |
| Diverse Health Hub @DHealthhub @patientchat Music is wonderful! #patientchat |
| Simply Kristy @SimplyKristyD T3: I am actively practicing self-care by getting outside for a 30-45 minute every day and by shutting down technology at 9pm and reading. Trying to keep my body active (as much as I can tolerate) and give my mind a rest so my sleep improves. #patientchat |
| Carly Flumer (she/her) @carlyflumer T3: Going outside, meaningful conversations with family and friends, therapy, and journaling. Can always use more! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T3a: I’m trying, but not doing a good job. Being a parent/adult with a #RareDisease has its challenges, one of them being I feel bad enough attempting to take care of my needs, so when it comes to self-care beyond that, the guilt sets in even more than usual. #patientchat |
| Patient Chat @patientchat @PatientWorthy I agree with all of those, especially the morning coffee ☕️. #patientchat |
| Patient Chat @patientchat RT @power4patients: T3: T3: Practice self-care through meditation with our 15-minute expert guided mindfulness meditation practice sessions every Monday and Friday at 12pm ET: https://t.co/BQzDmpwnmj #patientchat https://t.co/AbSLGqhu4g |
| Patient Chat @patientchat (T4:) coming up..... #patientchat |
| Jeff Dubin @Power2Patient @SimplyKristyD @SimplyKristyD I find myself falling into the watching Netflix trap when I, like you, should be reading before bedtime for better sleep. #patientchat |
| Patient Chat @patientchat @rarelikeher Hopefully you find time this weekend to practice some self-care! #patientchat |
| Patient Chat @patientchat T4: Is there anything new you would like to try to prioritize your overall wellness? #patientchat https://t.co/enAPe5yGWN |
| Patient Worthy @PatientWorthy @aggievic14 My kind of sign! I just finished my Venti a little while ago. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T3b: I’ve tried to practice self care through writing. It’s hard, though (hands don’t cooperate, making the time, & other challenges). Blogging was nerve-racking, yet also therapeutic. My last post was in October & dealt with mental health. #patientchat https://t.co/ttEpzGB6ed |
| Diverse Health Hub @DHealthhub @patientchat T3: Self-care has been at the top of my mind during this pandemic! Learning how to meditate and eat better has helped my overall wellness. Grateful for our Prescription for Community Wellness program: https://t.co/TBAaqRJ6mn #patientchat |
| Jeff Dubin @Power2Patient T3: I came across a great hypnosis app, #Nerva, for IBS but it's very soothing for anyone #patientchat https://t.co/D3ovhl8zM4 |
 | Janet Kennedy @GetSocialHealth Being (mostly) at home in 2020 meant committing to a new weight management program (down 45+ pounds) and going to my very disinfected @clubpilates location 4-5x a week. #patientchat |
| Carly Flumer (she/her) @carlyflumer T4: Yes! Engaging more with my spiritual side by connecting with my higher power who doesn’t judge and loves me no matter what. 🧘♀️ #patientchat |
| Patient Chat @patientchat @SarcoidosisofLI Hi Frank! Thanks for joining us today! #patientchat |
| Diverse Health Hub @DHealthhub @patientchat T3: We also have a special guest for our cook and learn session on Wed, 02/10. “On-the-go “Green Monster” Frittata Bites with @ryanscottshow! From Rachel Ray’s kitchen to yours! Interested in joining? https://t.co/DxEyEK0y9M #patientchat https://t.co/goLJcFTyxl |
| Patient Worthy @PatientWorthy A4. Meditation and mindfulness. Have been learning more about it and it seems helpful, so trying to put it into practice more in daily life. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T4: Taking my own advice (in addition to the advice of others) would be the ideal next step. I love to support, encourage, & try to help other people, but when it comes to me, I’m definitely not the best. More self-compassion would also be helpful. #patientchat |
| Simply Kristy @SimplyKristyD @Power2Patient The Netflix trap is real!! I had to get intentional about improving my night time routine because the insomnia was happening too often and impacting my physical health. I have noticed an improvement so am trying to maintain. I do miss Netflix though. #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T4 I'm trying to prioritize nutrition. I can't believe how much sugar is in our everyday foods. #patientchat https://t.co/jm3TdR3hJ3 |
| Diverse Health Hub @DHealthhub @patientchat T4: I have always wanted to get into meditation, but was unsure where to start. Catching live sessions with yogi Broderick Rodell every Mon and Fri has made my weeks a little smoother. Learn more: https://t.co/TBAaqRJ6mn #patientchat |
| Simply Kristy @SimplyKristyD @ShereeseMayMba It's crazy how much you discover when you really start to monitor #patientchat |
| Patient Chat @patientchat @SarcoidosisofLI Hi Frank, don’t forget to add #patientchat to your answers! |
| Patient Chat @patientchat (T5:) coming up..... #patientchat |
| Patient Chat @patientchat @aggievic14 @RareDiseaseDad Wow, a gratitude journal! That is an amazing idea! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @Srotberg15 I hear this, Seth! My perception of how I am perceived (a perception of a perception?) is such a real struggle. Thank you for sharing this. #patientchat |
| Patient Worthy @PatientWorthy @aggievic14 @RareDiseaseDad @patientchat Gratitude journals can be incredibly helpful! I have two - one I fill out in the morning and one I fill out at night. That way I'm forced to start and end my day with gratitude, which has shifted my thinking a lot in terms of overall wellness. #PatientChat |
| Diverse Health Hub @DHealthhub @RareDiseaseDad @patientchat T4: I agree with Adam. Taking my own advice is difficult for some reason, I can help and support others, but personally I am stubborn. #patientchat |
| Patient Chat @patientchat T5: Do you have tips for when someone is feeling overwhelmed or anxious? #patientchat https://t.co/WB2tzXq6TU |
| Janet Kennedy @GetSocialHealth I finally get the "have to workout" feeling. I really feel great because Pilates is building my strength with very little stress on back, neck, joints. #patientchat https://t.co/cHNh9jBVYE |
| Diverse Health Hub @DHealthhub RT @patientchat: T4: T4: Is there anything new you would like to try to prioritize your overall wellness? #patientchat https://t.co/enAPe5yGWN |
| Patient Worthy @PatientWorthy A5. Be kind to yourself when feeling overwhelmed and anxious. Remember that you are not bad or weak for feeling your emotions. Also, find a good distraction, whether that is talking to a friend, watching TV, napping, reading, etc. #patientchat |
| Patient Chat @patientchat RT @PatientWorthy: A5. Be kind to yourself when feeling overwhelmed and anxious. Remember that you are not bad or weak for feeling your emotions. Also, find a good distraction, whether that is talking to a friend, watching TV, napping, reading, etc. #patientchat |
| Carly Flumer (she/her) @carlyflumer T5: Empathy, kindness, and a willingness to listen without judgment is the BEST gift a #cancer patient, #raredisease patient, or really anyone can receive. 💕 #patientchat |
| Diverse Health Hub @DHealthhub @patientchat T5: When I'm feeling overwhelmed & anxious, tips that have helped me are, taking a few deep breaths to try & calm & steady yourself & I always talk to myself by saying, "You can do this, you've been through worse & you're still here. This is Nothing, You will be Ok." #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @SimplyKristyD Right? My favorite breakfast was oatmeal with cranberries and blueberries until my doctor told me all the sugar I was getting. #patientchat https://t.co/zV00TLS1af |
| Patient Empowerment Network @power4patients T5: Certified Yoga Therapist Raquel Jex Forsgren shares a short yoga and breathing technique to help you reduce anxiety and increase relaxation: https://t.co/v9ZfGCXtnT #patientchat https://t.co/oosJLfxp0I |
| Carly Flumer (she/her) @carlyflumer @PatientWorthy Yes!! We are NOT our emotions. #patientchat |
| Simply Kristy @SimplyKristyD T4: I would like to get back into mindfulness practice. This has been lost over the past year and I know it helps me keep my mental health in check. #patientchat |
| Patient Worthy @PatientWorthy @power4patients Thank you for sharing this! Very helpful. #patientchat |
 | Generation Patient @genpatient Hi #patientchat we are just checking in today! Excited to catch up on this discussion about mental health later on today! @patientchat |
| Patient Worthy @PatientWorthy @carlyflumer Agreed. #patientchat |
| Patient Chat @patientchat @HA_Summit Thanks for checking in! Happy to have you here. #patientchat |
| Patient Chat @patientchat (T6:) coming up..... #patientchat |
| Janet Kennedy @GetSocialHealth @patientchat T5: My cat, Max, is my major stress reliever. He didn't used to be so cuddly but being with him 24/7 has made him a major cuddle bug. (He is giving me the side-eye here.)Lots of pet adoptions are happening during #COVID19. #PatientChat https://t.co/460AAYeCmh |
| Diverse Health Hub @DHealthhub @patientchat T5: It helps to remember that you did the Best that YOU could do. #patientchat |
 | Victoria (she/her/ella) @aggievic14 RT @GetSocialHealth: @patientchat T5: @patientchat T5: My cat, Max, is my major stress reliever. He didn't used to be so cuddly but being with him 24/7 has made him a major cuddle bug. (He is giving me the side-eye here.)Lots of pet adoptions are happening during #COVID19. #PatientChat https://t.co/460AAYeCmh |
| Patient Chat @patientchat T6: What did you do this week to make you feel good? #patientchat https://t.co/CQKvEXpMeX |
| Jeff Dubin @Power2Patient @DHealthhub @patientchat T5: It helps to say, "I am enough." #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T5: If you're not okay, it's okay. Reach out. Seek help. Develop & find support systems if you haven’t. Then lean in. Sometimes you feel like the only one, but you aren’t. #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @Power2Patient: @DHealthhub @patientchat T5: @DHealthhub @patientchat T5: It helps to say, "I am enough." #patientchat |
| Diverse Health Hub @DHealthhub @patientchat T6: To make myself feel good this week by Actually listening to my body. Wednesday, I was incredibly exhausted, I came home, turned my cell on Do Not Disturb & just slept & caught up on much needed rest. I felt so much better afterwards. #patientchat |
| Simply Kristy @SimplyKristyD T5 a: I find it helps me to write out what is on my mind. Sometimes seeing everything on paper makes them less daunting? I also will allow myself 10 minutes of "worry time" at night where I let my mind go and then I consciously change my thinking. #patientchat |
| Diverse Health Hub @DHealthhub RT @patientchat: T6: T6: What did you do this week to make you feel good? #patientchat https://t.co/CQKvEXpMeX |
| Patient Worthy @PatientWorthy A6. Took a nice walk outside and enjoyed the sunlight. Created a new playlist and danced around the living room. Started a new book. And the Girl Scout cookies didn't hurt either. #patientchat |
| Patient Chat @patientchat RT @RareDiseaseDad: @patientchat T5: @patientchat T5: If you're not okay, it's okay. Reach out. Seek help. Develop & find support systems if you haven’t. Then lean in. Sometimes you feel like the only one, but you aren’t. #patientchat |
| Diverse Health Hub @DHealthhub RT @RareDiseaseDad: @patientchat T5: @patientchat T5: If you're not okay, it's okay. Reach out. Seek help. Develop & find support systems if you haven’t. Then lean in. Sometimes you feel like the only one, but you aren’t. #patientchat |
| Carly Flumer (she/her) @carlyflumer T6: Lots of exercises, journaling, and talking with friends. Self-help podcasts have also been incredibly helpful. #patientchat |
| Simply Kristy @SimplyKristyD T5 b: Lastly, I practice daily gratitude and find that helps me with perspective. #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @PatientWorthy: A6. Took a nice walk outside and enjoyed the sunlight. Created a new playlist and danced around the living room. Started a new book. And the Girl Scout cookies didn't hurt either. #patientchat |
| Simply Kristy @SimplyKristyD RT @RareDiseaseDad: @patientchat T5: @patientchat T5: If you're not okay, it's okay. Reach out. Seek help. Develop & find support systems if you haven’t. Then lean in. Sometimes you feel like the only one, but you aren’t. #patientchat |
| Patient Chat @patientchat (T7:) coming up..... #patientchat |
| Simply Kristy @SimplyKristyD T6: This week I sat in my car and called my best friend. We chatted for an hour uninterrupted and it was glorious! #patientchat |
| Carly Flumer (she/her) @carlyflumer @DHealthhub @patientchat Yes! I learned from a podcast this mantra: “You were doing the best that you could do in that moment with the knowledge and tools that you had.” I try to remind myself of this when I feel shame. #patientchat |
| Simply Kristy @SimplyKristyD RT @carlyflumer: T6: T6: Lots of exercises, journaling, and talking with friends. Self-help podcasts have also been incredibly helpful. #patientchat |
| Patient Chat @patientchat @SimplyKristyD I love that idea of “worry time” and writing everything down. Will be incorporating this into my own life, thanks Kristy! #patientchat |
| Patient Worthy @PatientWorthy @carlyflumer Any podcasts you would suggest? #patientchat |
 | Erin Gilmer (Legacy) @GilmerHealthLaw Everything. |
| Patient Worthy @PatientWorthy @SimplyKristyD It's so nice being able to catch up with friends! #patientchat |
| Carly Flumer (she/her) @carlyflumer @RareDiseaseDad @patientchat We need to normalize the phrase “It’s okay to not be okay.” #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @carlyflumer Absolutely! Love the without judgement point as well, Carly. I think I can point that inwards as well...I can share to the one who is listening without judging myself for sharing what I'm sharing. Well said! #patientchat |
| Simply Kristy @SimplyKristyD RT @carlyflumer: @RareDiseaseDad @patientchat We need to normalize the phrase “It’s okay to not be okay.” #patientchat |
| Patient Chat @patientchat RT @carlyflumer: @DHealthhub @patientchat Yes! I learned from a podcast this mantra: @DHealthhub @patientchat Yes! I learned from a podcast this mantra: “You were doing the best that you could do in that moment with the knowledge and tools that you had.” I try to remind myself of this when I feel shame. #patientchat |
| Patient Chat @patientchat T7: What are you grateful for at the moment? #patientchat https://t.co/M4lrpNrMyc |
| Simply Kristy @SimplyKristyD RT @carlyflumer: @DHealthhub @patientchat Yes! I learned from a podcast this mantra: @DHealthhub @patientchat Yes! I learned from a podcast this mantra: “You were doing the best that you could do in that moment with the knowledge and tools that you had.” I try to remind myself of this when I feel shame. #patientchat |
 | Meditation @MeditationBot_ RT @scrufton73: T3: |
| Inspire @InspireIsHealth RT @patientchat: T7: T7: What are you grateful for at the moment? #patientchat https://t.co/M4lrpNrMyc |
| Janet Kennedy @GetSocialHealth @patientchat T7: What am I grateful for right now? Both of my parents now have received the @Moderna #vaccine #1 & #2! Phew! #PatientChat |
| Diverse Health Hub @DHealthhub @patientchat T7: I am grateful for my health. With #SickleCellDisease, there's a lot of internal organ damage but I have been very fortunate so far. I'm extremely grateful for that, because I know things could always be worse.🙏🏿 #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T6: I've been using the #RareDiseaseTruth hashtag this week (thank you, @NeenaNizar!). It's helpful & feels good to get some of these truths out there. It can be heartbreaking, exhausting & somewhat difficult, but it's necessary (for me). I'm glad I'm doing it. #patientchat |
| Patient Chat @patientchat @darlakbrown I always try to go to bed early, but it never happens! I know once I do, I’ll feel so much better throughout my days. #patientchat |
| Patient Worthy @PatientWorthy A7. Patient Worthy is grateful for you!!! We love what we do and we love being able to connect to this community. Beyond that, I am grateful that it has stopped snowing, for my cat, and that currently all of my family is doing well during these unprecedented times. #patientchat |
| Simply Kristy @SimplyKristyD T7: I am very grateful that I am feeling better than I have been for the last few weeks. I am grateful I have the energy to go for a walk and play with my kids. #patientchat |
| Patient Chat @patientchat @GetSocialHealth @Moderna Congrats!! #patientchat |
 | Karen Knops MD @KMKnops RT @carlyflumer: T5: T5: Empathy, kindness, and a willingness to listen without judgment is the BEST gift a #cancer patient, #raredisease patient, or really anyone can receive. 💕 #patientchat |
| Carly Flumer (she/her) @carlyflumer @PatientWorthy Unfuck Your Brain with @RedesignYrMind, any @BreneBrown podcast, and @justbreakuppod. #patientchat |
| Jeff Dubin @Power2Patient T7: Grateful that my elderly parents finally got the vaccine. #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 |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T7: Supportive communities such #PatientChat, #RareDiseaseTruth, #RareDisease, where we can help, seek help, support, & be supported. Without the people involved, things would be beyond the already seemingly unbearable status. Thank you, all! |
| Carly Flumer (she/her) @carlyflumer T7: Friends who listen. They don’t have to understand. ❤️ #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @SimplyKristyD I'm glad you've been feeling better than you have been as well, Kristy! And I can relate to the walking & playing with the kids parts as well. Cheers! #patientchat |
| Patient Chat @patientchat @SarcoidosisofLI #patientchat |
 | Neena Nizar @NeenaNizar RT @RareDiseaseDad: @patientchat T6: @patientchat T6: I've been using the #RareDiseaseTruth hashtag this week (thank you, @NeenaNizar!). It's helpful & feels good to get some of these truths out there. It can be heartbreaking, exhausting & somewhat difficult, but it's necessary (for me). I'm glad I'm doing it. #patientchat |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @RareDiseaseDad: @patientchat T7: @patientchat T7: Supportive communities such #PatientChat, #RareDiseaseTruth, #RareDisease, where we can help, seek help, support, & be supported. Without the people involved, things would be beyond the already seemingly unbearable status. Thank you, all! |
| Patient Chat @patientchat @SarcoidosisofLI #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @Power2Patient Excellent news, Jeff! #patientchat |
| Jeff Dubin @Power2Patient @RareDiseaseDad Thank you Adam! #patientchat |
| Diverse Health Hub @DHealthhub @patientchat CT: #patientchat I learned that you are never alone in feeling overwhelmed, exhausted, etc., & you have more in common w/others than you think. Implementing new things like meditation, cook & learn sessions, keeps things fresh & helps with your overall well-being. #patientchat |
| Jeff Dubin @Power2Patient @darlakbrown Thank you, Darla! #patientchat |
| Diverse Health Hub @DHealthhub RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of, or can implement. Start your tweet w/ CT: #patientchat |
| Diverse Health Hub @DHealthhub RT @patientchat: T7: T7: What are you grateful for at the moment? #patientchat https://t.co/M4lrpNrMyc |
| Simply Kristy @SimplyKristyD CT: It's great to see from others what their coping strategies are. I've learned of a few I will try going forward. #patientchat |
 | Frank R. @SarcoidosisofLI @patientchat T6. #patientchat This week I really just spent quality time with my family. They always help me focus on what is important to me. |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Diverse Health Hub @DHealthhub RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Patient Chat @patientchat Join us for a “Vaccine Hesitancy: Let's Talk About It” Empowered #patientchat on Friday, February 19th @ 10 AM PT| 1 PM ET! https://t.co/uYJCJR2n54 https://t.co/jOa1q64fmx |
| Diverse Health Hub @DHealthhub RT @carlyflumer: @DHealthhub @patientchat Yes! I learned from a podcast this mantra: @DHealthhub @patientchat Yes! I learned from a podcast this mantra: “You were doing the best that you could do in that moment with the knowledge and tools that you had.” I try to remind myself of this when I feel shame. #patientchat |
| Diverse Health Hub @DHealthhub RT @Power2Patient: @DHealthhub @patientchat T5: @DHealthhub @patientchat T5: It helps to say, "I am enough." #patientchat |
 | Alan Brewington @abrewi3010 CT it’s Friday already. Sorry I missed the discussion. Is it quitting time yet??? Happy Weekend!!! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat CT: T1 made it clear that many of us are feeling strained, stressed, burdened, overwhelmed, etc. Sometimes just sharing these things rather than suppressing them can be incredibly helpful. We can be heard/seen/listened to. And we can realize we're not alone. #patientchat |
| Patient Chat @patientchat RT @RareDiseaseDad: @patientchat CT: @patientchat CT: T1 made it clear that many of us are feeling strained, stressed, burdened, overwhelmed, etc. Sometimes just sharing these things rather than suppressing them can be incredibly helpful. We can be heard/seen/listened to. And we can realize we're not alone. #patientchat |
| Frank R. @SarcoidosisofLI @patientchat T7. #patientchat I am grateful I am alive. I am also grateful for my family and friends who have been helping me navigate this new diagnosis. I am also grateful for all of my fellow advocates who fight for those who can't fight for themselves. |
| Patient Chat @patientchat @abrewi3010 Happy weekend!! Thanks for checking in! #patientchat |
| Frank R. @SarcoidosisofLI RT @PatientWorthy: A5. Be kind to yourself when feeling overwhelmed and anxious. Remember that you are not bad or weak for feeling your emotions. Also, find a good distraction, whether that is talking to a friend, watching TV, napping, reading, etc. #patientchat |
| Patient Chat @patientchat Keep the conversation going between chats with hashtag #patientchat |
 | Memej99-SickleCellLifeOfMemej @Memej99 RT @RareDiseaseDad: @patientchat CT: @patientchat CT: T1 made it clear that many of us are feeling strained, stressed, burdened, overwhelmed, etc. Sometimes just sharing these things rather than suppressing them can be incredibly helpful. We can be heard/seen/listened to. And we can realize we're not alone. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of, or can implement. Start your tweet w/ CT: #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @carlyflumer: @DHealthhub @patientchat Yes! I learned from a podcast this mantra: @DHealthhub @patientchat Yes! I learned from a podcast this mantra: “You were doing the best that you could do in that moment with the knowledge and tools that you had.” I try to remind myself of this when I feel shame. #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @RareDiseaseDad: @patientchat T5: @patientchat T5: If you're not okay, it's okay. Reach out. Seek help. Develop & find support systems if you haven’t. Then lean in. Sometimes you feel like the only one, but you aren’t. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad RT @carlyflumer: @RareDiseaseDad @patientchat We need to normalize the phrase “It’s okay to not be okay.” #patientchat |
| Frank R. @SarcoidosisofLI @patientchat Sorry was trying to get caught up and then realized I forgot #patientchat. |
| Memej99-SickleCellLifeOfMemej @Memej99 @RareDiseaseDad @DHealthhub @patientchat Hi Adam! I enjoyed #patientchat, great topic! |
| Patient Chat @patientchat @SarcoidosisofLI No worries! #patientchat |
| Patient Chat @patientchat Enjoy your weekend everyone and make sure to set time aside this weekend for some self-care! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @Memej99 @DHealthhub @patientchat Hi Memej! Yes, fantastic #patientchat topic. Came at a good time for me, which is a bonus. 🙂 Good to see you here! Hope you’re doing well! |
 | Marni Cartelli @Purrfectly_Rare #patientchat 2day I'm feeling procrastinative....is that a word? I'm sitting on the treadmill typing this 🤣 |
| Patient Chat @patientchat @ShereeseMayMba https://t.co/2FdpO4lRoS |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: Enjoy your weekend everyone and make sure to set time aside this weekend for some self-care! #patientchat |
| Memej99-SickleCellLifeOfMemej @Memej99 RT @patientchat: Keep the conversation going between chats with hashtag #patientchat |
#patientchat content from Twitter.