#PatientsHavePower Transcript
Healthcare social media transcript of the #PatientsHavePower hashtag.
– ().
See #PatientsHavePower Influencers/Analytics.
Profile | Tweet |
---|---|
M&B Sciences @mbsciencesinc Proud to be hosting today’s #PatientsHavePower Twitter chat to empower and educate. Who is joining us? Please introduce yourself as we get things started! https://t.co/KJEmqgp1XT | |
Lisa Davis Budzinski @lisadbudzinski RT @Clara_Health: Proud to be hosting today’s #PatientsHavePower Twitter chat to empower and educate. Who is joining us? Please introduce yourself as we get things started! https://t.co/KJEmqgp1XT | |
M&B Sciences @mbsciencesinc If you haven’t already, check out the questions to start brainstorming! https://t.co/vBlPpba3qV #PatientsHavePower | |
Christina Lizaso @btrfly12 RT @Clara_Health: Excited to kick off our #PatientsHavePower Twitter chat in just a few short minutes! Preview the questions here: Excited to kick off our #PatientsHavePower Twitter chat in just a few short minutes! Preview the questions here: https://t.co/vBlPpba3qV | |
M&B Sciences @mbsciencesinc We will be using a Q1, A1 format with 6 questions! Remember to use the hashtag, #PatientsHavePower in all your tweets. | |
Lisa Davis Budzinski @lisadbudzinski Hello everyone!! Lisa here from @Cpnervecenter #patientshavepower https://t.co/qVbBYEQUyr | |
Marisa Troy @JournalingIBD Hi! I’m Marisa and I’ve had #inflammatoryboweldisease since I was 13. I’m from NY and am obsessed with my two fur babies :) #patientshavepower | |
Ross @Rossco006 @Clara_Health Hi everybody Ross here from the frozen north! A balmy -36C today!!! #PatientsHavePower | |
Barby Ingle Official @BarbyIngle @BarbyIngle pres of @powerofpain , pain patient, advocate, author, wife and sister. #CheerleaderofHOPE #PatientsHavePower https://t.co/wjzXhR2WZM | |
M&B Sciences @mbsciencesinc Tag an advocate who should be here chatting with us today! #PatientsHavePower | |
Christina Lizaso @btrfly12 Hi #patientshavepower - Nice to have the chance to join this time around :) yay | |
M&B Sciences @mbsciencesinc Hello all! #BreakthroughCrew here, excited to hear insights from our community on managing relationships and chronic illness. #PatientsHavePower | |
Empowering Patients,LLC • Alison @Empoweringpts9 Hi! I'm Alison! I have #Crohns and an #ostomy. I'm in *lovely* Ohio. #patientshavepower #IBD https://t.co/66q6enYmJZ | |
Liz Kennerley (she/her) #COVIDIsntOver #PBMReform @LifeAccrdingLiz Oh, @RarePOV! https://t.co/04l7OFZsWF | |
M&B Sciences @mbsciencesinc @BarbyIngle @powerofpain Hey there Barby!! Thanks for joining! #PatientsHavePower | |
Ross @Rossco006 @lisadbudzinski @Cpnervecenter Hey Lisa great to see you here! #PatientsHavePower | |
Inspire @InspireIsHealth Hello to #PatientsHavePower. John Novack here from Inspire. | |
M&B Sciences @mbsciencesinc @Rossco006 Oh my!! How are you even typing?! #PatientsHavePower https://t.co/bgocUA3O3U | |
AutonomicRN© @AutonomicRN Kim here from very, frigid Wisconsin! Blogger, #raredisease patient and advocate. RN but full time patient apparently was in the hand of cards that I was dealt. BTW--the GIF for welome is making me hear "The Nanny" theme song!! #patientshavepower | |
M&B Sciences @mbsciencesinc @btrfly12 Christina! Thanks for joining! We're thrilled to have our AMAZING advisor here :) #PatientsHavePower | |
AutonomicRN© @AutonomicRN @btrfly12 Hi Christina! #patientshavepower | |
ChronicallyJess @ChronicallyJess Hi! I’m Jess, #crohns patient and advocate for the past 10 years. I’ll be in and out - busy with two little rascals this afternoon. 👬🤷🏻♀️❤️#patientshavepower | |
Rie Lopez, MPH (she/her) @RieOfLetters Rie here! Trying to transition between phone and laptop. Gotta have maximum comfort today. Great to see everyone!! #patientshavepower | |
Lisa Davis Budzinski @lisadbudzinski RT @Clara_Health: If you haven’t already, check out the questions to start brainstorming! https://t.co/vBlPpba3qV #PatientsHavePower | |
Ross @Rossco006 @Clara_Health Lol! It’s not a whole lot of fun when it gets this cold! #PatientsHavePower | |
M&B Sciences @mbsciencesinc @teaminspire Hey John! Great to see you. #PatientsHavePower | |
AutonomicRN© @AutonomicRN @Clara_Health @thelupusliar @coffeenlithium #patientshavepower | |
AutonomicRN© @AutonomicRN @Rossco006 @Clara_Health Hey Ross! #patientshavepower | |
M&B Sciences @mbsciencesinc Are we ready to get started...Q1 coming now! #PatientsHavePower | |
Amanda B Osowski @amandabosowski Hi! I'm Amanda and I have #CrohnsDisease. I'm from Chicago, work in clinical trial recruitment professionally, am a new member of #breakthroughcrew and am excited to be here! I got married in 2017 so this topic is of great interest to me! #PatientsHavePower @Clara_Health | |
AutonomicRN© @AutonomicRN @lisadbudzinski @Cpnervecenter Lisa!! #patientshavepower | |
Rie Lopez, MPH (she/her) @RieOfLetters @lisadbudzinski @Cpnervecenter Hi Lisa! *waving frantically* #PatientsHavePower | |
Ross @Rossco006 @btrfly12 Hi Christina! Long time since we last had the chance to chat! #patientshavepower | |
Lisa Davis Budzinski @lisadbudzinski @Rossco006 @Cpnervecenter You too Ross! ✨👋 #PatientsHavePower | |
M&B Sciences @mbsciencesinc Q1: Who have been your biggest fans through your patient journey? Or whose biggest fan have you been through theirs? #PatientsHavePower https://t.co/VBVeBBCjoD | |
Lisa Davis Budzinski @lisadbudzinski @RieOfLetters @Cpnervecenter Hey Rie!! #PatientsHavePower https://t.co/mqZd31ZOcE | |
AutonomicRN© @AutonomicRN @bbhomebody maybe #bubblyhawaiichat :) #patientshavepower | |
Rie Lopez, MPH (she/her) @RieOfLetters @bbhomebody @Cpnervecenter Great to see you Becky! #PatientsHavePower https://t.co/LWW2BuFWXt | |
Inspire @InspireIsHealth RT @Clara_Health: Q1: Q1: Who have been your biggest fans through your patient journey? Or whose biggest fan have you been through theirs? #PatientsHavePower https://t.co/VBVeBBCjoD | |
Christina Lizaso @btrfly12 @Rossco006 too long. Great to tweet up with you again. #patientshavepower | |
Ross @Rossco006 @Clara_Health 🙌🙌🙌 #BreakthroughCrew in the house!!! #patientshavepower | |
Lisa Davis Budzinski @lisadbudzinski @bbhomebody @Cpnervecenter Howdy Pard!! #PatientsHavePower https://t.co/NeTODPmTj5 | |
AutonomicRN© @AutonomicRN @bbhomebody @Cpnervecenter Hey Becky! #patientshavepower | |
Christina Lizaso @btrfly12 RT @Clara_Health: Q1: Q1: Who have been your biggest fans through your patient journey? Or whose biggest fan have you been through theirs? #PatientsHavePower https://t.co/VBVeBBCjoD | |
Empowering Patients,LLC • Alison @Empoweringpts9 RT @Clara_Health: Q1: Q1: Who have been your biggest fans through your patient journey? Or whose biggest fan have you been through theirs? #PatientsHavePower https://t.co/VBVeBBCjoD | |
Angela Cohen @angelee828 @Clara_Health Hey all! I’m Angela from Wisconsin :) #PatientsHavePower | |
Lisa Davis Budzinski @lisadbudzinski @AutonomicRN @Cpnervecenter KIMBO!!! ✨💕 #PatientsHavePower | |
Ross @Rossco006 @BarbyIngle @powerofpain Great to see you Barby! #patientshavepower | |
Marisa Troy @JournalingIBD A1: my parents and brother were my biggest support system when I was younger. For the past five years, my amazing boyfriend has been instrumental in my journey. #patientshavepower | |
Barby Ingle Official @BarbyIngle A1: My biggest fans in my pain journey is my husband @kenraytalor, my dad before he passed away, and my best friend @JodiOrvisDragon #PatientsHavePower https://t.co/jbnRLafCo9 | |
Rie Lopez, MPH (she/her) @RieOfLetters @AutonomicRN Hiya Kim! The hearts are warm and toasty, coming from the chimney. That's how it works, right? #PatientsHavePower https://t.co/Q4Rg3t9mol | |
Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: A1: A1: My biggest fans in my pain journey is my husband @kenraytalor, my dad before he passed away, and my best friend @JodiOrvisDragon #PatientsHavePower https://t.co/jbnRLafCo9 | |
International Pain Foundation® @iPainOfficial RT @BarbyIngle: A1: A1: My biggest fans in my pain journey is my husband @kenraytalor, my dad before he passed away, and my best friend @JodiOrvisDragon #PatientsHavePower https://t.co/jbnRLafCo9 | |
iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: A1: A1: My biggest fans in my pain journey is my husband @kenraytalor, my dad before he passed away, and my best friend @JodiOrvisDragon #PatientsHavePower https://t.co/jbnRLafCo9 | |
Anna Evangeline (she/her) @sixhips Hey everyone. I'm Anna: grown up juvenile arthritis kid with 6 hip replacements and pericarditis to boot! I'm a #BreakThrough crew ambassador, patient advocate, and athlete in Boston. Work is hectic so I'll do my best to be present here with ya'll #PatientsHavePower | |
Ross @Rossco006 @ChronicallyJess Hey Jess! #patientshavepower | |
M&B Sciences @mbsciencesinc @angelee828 Hi Angela!! #PatientsHavePower https://t.co/FYLE6fbcg0 | |
ChronicallyJess @ChronicallyJess A1: My husband has been a big support from the early days of our relationship. More recently, I’ve been able to meet other patients and we’ve become friends and supporters of one another. And I’m always ready to support anyone who feels alone or wants to chat. #PatientsHavePower | |
Ross @Rossco006 @RieOfLetters Hey Rie! #PatientsHavePower | |
Barby Ingle Official @BarbyIngle You too Ross. #PatientsHavePower https://t.co/jwNfliFZlf | |
AutonomicRN© @AutonomicRN @RieOfLetters Love it!!! #patientshavepower | |
M&B Sciences @mbsciencesinc @sixhips ANOTHER Clara advisor here with us today! Aren't we lucky?! #PatientsHavePower | |
M&B Sciences @mbsciencesinc @BarbyIngle @JodiOrvisDragon You two are an incredible team! We are lucky to partner with you both through the @powerofpain! #PatientsHavePower | |
Empowering Patients,LLC • Alison @Empoweringpts9 A1: My biggest "fans" and cheering committee is my nieces/nephews. They're the reason I breathe (even through the junky sinus season) #patientshavepower https://t.co/Bx9OxCxL51 | |
Amanda B Osowski @amandabosowski A1: My biggest support system has been people who don't need an apology or explanation for my life with #IBD. #PatientsHavePower | |
Ross @Rossco006 @btrfly12 Often the times with the chats just don’t fit my schedule but today did for a bit. #patientshavepower | |
Amanda B Osowski @amandabosowski A1: My husband @rosowski, a core group of friends from school, sorority and work, and my amazing advocate friends - ASO to @nataliesparacio @keriannecdotes @bethecactuskenz for starters <3 #PatientsHavePower | |
M&B Sciences @mbsciencesinc @Empoweringpts9 Adorable! What a great answer. #PatientsHavePower https://t.co/Z2OzImlttM | |
Anna Evangeline (she/her) @sixhips My sisters (@blissfulsisters & @alexis_olita), my 3 best girlfriends from college, and my spouse have been my biggest fans, cheerleaders and support system no matter how low my patient journey has brought me #patientshavepower | |
Rie Lopez, MPH (she/her) @RieOfLetters @Rossco006 @Clara_Health Great to see you Ross! That is not balmy, not balmy at all. Stay toasty, my friend! #PatientsHavePower | |
M&B Sciences @mbsciencesinc 👇Thank you for using your journey to give back and support others! #PatientsHavePower https://t.co/KrOeG1rBZX | |
Ross @Rossco006 @Clara_Health Lol! We’re only 5 min in and I’m already behind!!! #patientshavepower | |
Barby Ingle Official @BarbyIngle RT @Clara_Health: @BarbyIngle @JodiOrvisDragon You two are an incredible team! We are lucky to partner with you both through the @powerofpain! #PatientsHavePower | |
Lisa Davis Budzinski @lisadbudzinski A1 My hubby & I are eachothers fans as well as our families & friends✨ We both love helping others in their journey in any way that we can #patientshavepower | |
Empowering Patients,LLC • Alison @Empoweringpts9 @Rossco006 @Clara_Health Me tooooooo! I blame congestion and trying to get used to using a new device. :) #patientshavepower | |
Ross @Rossco006 @bbhomebody @AutonomicRN Oh yes! I’m in for that!!! #patientshavepower | |
AutonomicRN© @AutonomicRN A1: My husband, family and best friends have been my biggest fans. I always tell other people with #chronicillnesses that there are always more cheerleaders on the sidelines than they could ever imagine. We have fans that we have no idea who they are! #patientshavepower | |
Anna Evangeline (she/her) @sixhips @Empoweringpts9 Totally forgot to mention my 3 little nieces who are my reason for being - I always want to be able to make them proud! #PatientsHavePower | |
AutonomicRN© @AutonomicRN @bbhomebody I know...mine too! #patientshavepower | |
Rie Lopez, MPH (she/her) @RieOfLetters A1: I have to give all the thumbs up to my husband, in particular. He has been the one that takes care of everything when I just can't manage. He is and has always been my best friend and number one cheerleader. #patientshavepower | |
Empowering Patients,LLC • Alison @Empoweringpts9 @sixhips LOVE LOVE this answer!! You sound like me and literally the convo I had with 2 kiddos last week "I want to make you proud I'm your aunt." #patientshavepower | |
M&B Sciences @mbsciencesinc Q2 coming up... #PatientsHavePower | |
Ross @Rossco006 @RieOfLetters @Clara_Health Trying to do that but in about 20min I have to go to a specialists appointment! Car is already warming up! Lol! #patientshavepower | |
M&B Sciences @mbsciencesinc Q2: Share a challenging moment your relationship has faced because of life as a patient or caregiver. #PatientsHavePower https://t.co/rGnWr97bPr | |
Marisa Troy @JournalingIBD @RieOfLetters So so great and life changing when you have a partner who not only gets it, but is willing to pick up the slack without any guilt when you just can’t do much. #patientshavepower | |
AutonomicRN© @AutonomicRN @Rossco006 @bbhomebody We'll let you know when it's time for sandy beaches and beverages with umbrellas! #patientshavepower | |
AutonomicRN© @AutonomicRN #patientshavepower https://t.co/xd784BMC86 | |
Barby Ingle Official @BarbyIngle A2: As a chronic pain patient the hardest part of relationships is having to cancel plans or rearrange them due to symptom flares. Remembering the 5 stages of a relationship helps; forming, storming, norming, performing, adjourning #PatientsHavePower https://t.co/qnHjLZqy1v | |
Lex @alexis_olita LOVE YOU SHISHTER https://t.co/IqbpwACijI | |
International Pain Foundation® @iPainOfficial RT @BarbyIngle: A2: A2: As a chronic pain patient the hardest part of relationships is having to cancel plans or rearrange them due to symptom flares. Remembering the 5 stages of a relationship helps; forming, storming, norming, performing, adjourning #PatientsHavePower https://t.co/qnHjLZqy1v | |
M&B Sciences @mbsciencesinc RT @AutonomicRN: A1: A1: My husband, family and best friends have been my biggest fans. I always tell other people with #chronicillnesses that there are always more cheerleaders on the sidelines than they could ever imagine. We have fans that we have no idea who they are! #patientshavepower | |
iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: A2: A2: As a chronic pain patient the hardest part of relationships is having to cancel plans or rearrange them due to symptom flares. Remembering the 5 stages of a relationship helps; forming, storming, norming, performing, adjourning #PatientsHavePower https://t.co/qnHjLZqy1v | |
Liz Kennerley (she/her) #COVIDIsntOver #PBMReform @LifeAccrdingLiz @RarePOV #PatientsHavePower @Clara_Health | |
Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: A2: A2: As a chronic pain patient the hardest part of relationships is having to cancel plans or rearrange them due to symptom flares. Remembering the 5 stages of a relationship helps; forming, storming, norming, performing, adjourning #PatientsHavePower https://t.co/qnHjLZqy1v | |
Christina Lizaso @btrfly12 RT @Clara_Health: Q2: Q2: Share a challenging moment your relationship has faced because of life as a patient or caregiver. #PatientsHavePower https://t.co/rGnWr97bPr | |
Empowering Patients,LLC • Alison @Empoweringpts9 A2: It's important for patients to make sure that a partner doesn't get put into a category of nurse ONLY. That they're appreciated AND told a meaningful "thank you." #PatientsHavePower | |
Rie Lopez, MPH (she/her) @RieOfLetters A1b: I can't leave out my very favorite tweeps, many of whom are here in this chat. You have been my never-ending source of support when others don't get it. I am feeling all mushy and I hope y'all know who you are. XOXO #patientshavepower https://t.co/T5ydLJ6HMl | |
International Pain Foundation® @iPainOfficial RT @Clara_Health: @BarbyIngle @JodiOrvisDragon You two are an incredible team! We are lucky to partner with you both through the @powerofpain! #PatientsHavePower | |
International Pain Foundation® @iPainOfficial RT @Rossco006: @BarbyIngle @powerofpain Great to see you Barby! #patientshavepower | |
Ross @Rossco006 @sixhips Hey Anna great to see you here today! #patientshavepower | |
M&B Sciences @mbsciencesinc Sound advice from @BarbyIngle on managing #chronicpain and relationships! #PatientsHavePower https://t.co/Lk1EZ5BIW0 | |
AutonomicRN© @AutonomicRN A2: in 2012, I had a spinal fluid leak that landed me flat on my back for 3 months. Our marriage was tested to the limits. But each time we thoughts that there was no end in sight, we took a step back. Now I realize that it was prep for everything now. #patientshavepower | |
Emily Morgan, MPH, CHES @EmMorgan27 When I think about challenges with #IBD I automatically think "uncertainty." Never being 100% sure how I'm going to feel when invited to weddings, parties, or even a date. It can extremely frustrating to be unable to give the effort you want to family/friends. #patientshavepower | |
Empowering Patients,LLC • Alison @Empoweringpts9 A2: Caregivers/partners are often put into circumstances they couldn't have ever imagined and need someone to lean on & vent to when the patient is unavailable (ie inpatient etc). #patientshavepower | |
ChronicallyJess @ChronicallyJess @Clara_Health A2: I’m a patient and I’m the primary caregiver to our two children. ❤️ This means that my relationship with my husband sometimes comes third. Not ideal. My husband is very understanding, but it is a delicate balance that requires lots of intention to work #patientshavepower | |
Amanda B Osowski @amandabosowski A2: Although I'd had symptoms for YEARS, I was diagnosed with #crohnsdisease after a 9 day hospitalization occurring just 2 weeks after moving in with my husband. He was AMAZING, but we definitely went through so much physically & emotionally during this time #PatientsHavePower | |
AutonomicRN© @AutonomicRN @RieOfLetters It is Feb after all! #patientshavepower | |
Anna Evangeline (she/her) @sixhips Q2: We'd only been dating 7 mos when I needed a surgery required me to move out of my 3rd flr walk up apt. We had the "moving in" convo as a result (and did so almost 8 yrs ago!) Even though it worked out it was A LOT of pressure to put on a young relationship! #patientshavepower | |
M&B Sciences @mbsciencesinc We're digging deep in today's #PatientsHavePower chat. Thank you everyone for sharing your experiences so openly! No doubt it helps others enduring similar challenges. https://t.co/ZfjyeCWQwm | |
Heather 🇺🇸 @ZHeatherChamp Hi! Too late to join? Who posts the topics? Thx! #patientshavepower | |
Ross @Rossco006 My biggest fans without a doubt have been my family! They have been there through the entire journey. #PatientsHavePower https://t.co/gzqbN1ad1U | |
Barby Ingle Official @BarbyIngle RT @Clara_Health: Sound advice from @BarbyIngle on managing #chronicpain and relationships! #PatientsHavePower https://t.co/Lk1EZ5BIW0 | |
Anna Evangeline (she/her) @sixhips A2: We'd only been dating 7 mos when I needed a surgery required me to move out of my 3rd flr walk up apt. We had the "moving in" convo as a result (and did so almost 8 yrs ago!) Even though it worked out it was A LOT of pressure to put on a young relationship! #patientshavepower | |
Christina Lizaso @btrfly12 RT @Empoweringpts9: A2: A2: Caregivers/partners are often put into circumstances they couldn't have ever imagined and need someone to lean on & vent to when the patient is unavailable (ie inpatient etc). #patientshavepower | |
AutonomicRN© @AutonomicRN Absolutely! 🔽#patientshavepower https://t.co/eHVyc2UFjo | |
M&B Sciences @mbsciencesinc @ZHeatherChamp Never too late to join! You can check out the questions here...we're moving into Q3 shortly!! #PatientsHavePower https://t.co/X0yFLGU7KJ | |
Heather 🇺🇸 @ZHeatherChamp A1: I would say my mother, as she’s been with me since Day 1 brain tumor diagnosis. #btsm #PatientsHavePower #pten | |
Rie Lopez, MPH (she/her) @RieOfLetters A2: As a patient and caregiver, the biggest challenge to making and retaining relationships is the unpredictability of everything. It isn't just canceled plans, it is the loss of my entire life's plans and dragging everyone with me. #patientshavepower | |
ChronicallyJess @ChronicallyJess @Empoweringpts9 Or that they become the bearer of all of the mental struggle that #chroniciness brings... even though that’s hard, sometimes partners need to just be a “normal” partner - for lack of a better term. #patientshavepower | |
Amanda B Osowski @amandabosowski A2: During hospitalization 3 weeks after our wedding, I req'd intubation & a ventilator. Husband was traveling & nobody called him until it was over. I woke alone. This caused significant #PTSD inc not being able to sleep in bed for 6+ weeks. Also - intimacy :( #PatientsHavePower | |
M&B Sciences @mbsciencesinc @bbhomebody Thank you for your honesty Becky. We're so sorry you lost your husband. I am sure he would be proud of all the incredible work you do to help others! #PatientsHavePower | |
Christina Lizaso @btrfly12 RT @RieOfLetters: A2: A2: As a patient and caregiver, the biggest challenge to making and retaining relationships is the unpredictability of everything. It isn't just canceled plans, it is the loss of my entire life's plans and dragging everyone with me. #patientshavepower | |
Marisa Troy @JournalingIBD A2: In 2016, I was in and out of the ER/hospital very frequently. I started feeling like it was all in my head but my bf continued to maintain it wasn’t. Ended up needing my 15th major operation which came with a lot of “issues” #patientshavepower | |
Marisa Troy @JournalingIBD with my family. My bf did anything & everything to make things easy on me, despite the fact that it was 100% on him to help me recover. Will never forget the challenges that came with it, but also how amazing he was. #patientshavepower | |
Inspire @InspireIsHealth RT @RieOfLetters: A2: A2: As a patient and caregiver, the biggest challenge to making and retaining relationships is the unpredictability of everything. It isn't just canceled plans, it is the loss of my entire life's plans and dragging everyone with me. #patientshavepower | |
Heather 🇺🇸 @ZHeatherChamp A2: My mom and I used to fight bitterly. I knew it was because she was overwhelmed and paralyzed by fear. I have guilt but things are better now! #patientshavepower #pten #btsm | |
Angela Cohen @angelee828 A1: My biggest fans are some family and friends. My one friend told me “even if I can’t ever understand what you’re going through, I will always try to be understanding.” She is. It means the world. They’re supportive and there when I need them. #PatientsHavePower https://t.co/KEVaLpDUyh | |
Rie Lopez, MPH (she/her) @RieOfLetters @Rossco006 @Clara_Health Sending you all the virtual scarves. I have quite the collection! Hope your appointment goes well, Ross! #PatientsHavePower | |
Natalie Hayden @nataliesparacio @Clara_Health A1 Sorry I’m so late to the party! I’m out of town, but don want to miss this. I’m Natalie, I’ve had Crohn’s for almost 13 years. I’m a mom and an avid blogger. #PatientsHavePower | |
Ross @Rossco006 My relationship has its challenging moments period! Having to balance my kids and our relationship means we don’t always get the time we need together. #patientshavepower https://t.co/6nE50wrmql | |
AutonomicRN© @AutonomicRN @bbhomebody I can only imagine...my mom died the same year that I had a mass in my chest. Moving on without someone you love with all of your heart is a lot to take in. #patientshavepower | |
Empowering Patients,LLC • Alison @Empoweringpts9 RT @RieOfLetters: A2: A2: As a patient and caregiver, the biggest challenge to making and retaining relationships is the unpredictability of everything. It isn't just canceled plans, it is the loss of my entire life's plans and dragging everyone with me. #patientshavepower | |
Christina Lizaso @btrfly12 RT @angelee828: A1: A1: My biggest fans are some family and friends. My one friend told me “even if I can’t ever understand what you’re going through, I will always try to be understanding.” She is. It means the world. They’re supportive and there when I need them. #PatientsHavePower https://t.co/KEVaLpDUyh | |
Ross @Rossco006 @AutonomicRN @bbhomebody I’m in you just let me know! #patientshavepower | |
M&B Sciences @mbsciencesinc Glad to have you here Natalie! #PatientsHavePower https://t.co/6XgPJvRI2V | |
Chronic Sex @ChronicSexChat RT @Clara_Health: Q1: Q1: Who have been your biggest fans through your patient journey? Or whose biggest fan have you been through theirs? #PatientsHavePower https://t.co/VBVeBBCjoD | |
Chronic Sex @ChronicSexChat RT @Clara_Health: Q2: Q2: Share a challenging moment your relationship has faced because of life as a patient or caregiver. #PatientsHavePower https://t.co/rGnWr97bPr | |
Rie Lopez, MPH (she/her) @RieOfLetters @angelee828 That is great Angela! It DOES make such a difference to have that type of support system! #PatientsHavePower | |
AutonomicRN© @AutonomicRN @Rossco006 @bbhomebody Will do!!! #patientshavepower | |
Ross @Rossco006 @sixhips Lol! Love it! #patientshavepower | |
M&B Sciences @mbsciencesinc Q3: Share a special moment your relationship has experienced because of life as a patient or caregiver #PatientsHavePower https://t.co/6ajyxUkDHy | |
Natalie Hayden @nataliesparacio @Empoweringpts9 A1: My husband has been my rock and has been an incredible support to me. My parents, some family members and certain friends have been by my side thru everything. I feel the most cathartic conversations and friendships are those within the IBD community. #PatientsHavePower | |
Anna Evangeline (she/her) @sixhips A2: I've also had to have really tough convos with my sisters & spouse about my advanced directive, power of attorney, etc. My sister became my POA at 18 - which will never ever feel fair to me. It hurts me how much my illness impacted her childhood as well. #patientshavepower | |
Chronic Sex @ChronicSexChat RT @Clara_Health: Q3: Q3: Share a special moment your relationship has experienced because of life as a patient or caregiver #PatientsHavePower https://t.co/6ajyxUkDHy | |
Ross @Rossco006 @RieOfLetters @Clara_Health I do to! I’m fearing that I’m getting another diagnosis today. #patientshavepower | |
Lisa Davis Budzinski @lisadbudzinski A2 There are many challenges that arise in a 30 yr marriage with ourselves, families & friends. We always try to find humor & love in whatever presents itself. Sometimes it’s just the action of venting out loud that can make us giggle✨ #patientshavepower | |
AutonomicRN© @AutonomicRN It can be terrifying living in the unknown. But at the same time, we can't be afraid of what hasn't happened yet. Otherwise it feels like you are stuck in quicksand. #patientshavepower https://t.co/lGdSMFpjMm | |
Barby Ingle Official @BarbyIngle A3: I have been able to meet thousands of people I would never of connected with and learn about health and life because I am a chronic patient. It made more taught me patience and empathy #PatientsHavePower https://t.co/QOH5Cs0kPo | |
AutonomicRN© @AutonomicRN @Rossco006 @RieOfLetters @Clara_Health Sending good vibes your way! #patientshavepower | |
Empowering Patients,LLC • Alison @Empoweringpts9 RT @Clara_Health: Q3: Q3: Share a special moment your relationship has experienced because of life as a patient or caregiver #PatientsHavePower https://t.co/6ajyxUkDHy | |
Natalie Hayden @nataliesparacio @Clara_Health A2: Navigating parenting while dealing with Crohn’s has been a challenge at times, but it’s also shown me what I’m capable of. #PatientsHavePower | |
Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: A3: A3: I have been able to meet thousands of people I would never of connected with and learn about health and life because I am a chronic patient. It made more taught me patience and empathy #PatientsHavePower https://t.co/QOH5Cs0kPo | |
Chronic Sex @ChronicSexChat I'm bummed I'm not able to really chat today BUT wanna mention that we have a chat - #chronicsex - where we talk about all these things each Thursday night at 8 pm ET. If you want more on this topic, come join us! #PatientsHavePower | |
iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: A3: A3: I have been able to meet thousands of people I would never of connected with and learn about health and life because I am a chronic patient. It made more taught me patience and empathy #PatientsHavePower https://t.co/QOH5Cs0kPo | |
Amanda B Osowski @amandabosowski A3: Intimacy is different. A kiss on the forehead, rubbing my back. Things that used to feel embarrassing because of #CrohnsDisease now feel like something my husband and I share. @rosowski feel free to reply also. #PatientsHavePower | |
Ross @Rossco006 @BarbyIngle That’s what I love so much about my wife! She understands when I need time for myself or not to be able to attend a function of some type #patientshavepower | |
International Pain Foundation® @iPainOfficial RT @BarbyIngle: A3: A3: I have been able to meet thousands of people I would never of connected with and learn about health and life because I am a chronic patient. It made more taught me patience and empathy #PatientsHavePower https://t.co/QOH5Cs0kPo | |
Christina Lizaso @btrfly12 RT @Clara_Health: Q3: Q3: Share a special moment your relationship has experienced because of life as a patient or caregiver #PatientsHavePower https://t.co/6ajyxUkDHy | |
Marisa Troy @JournalingIBD A3: When I was in the hospital and couldn’t get out of bed to empty my #ostomy, my bf helped me without any hesitation. This continued for a while and it was then that I realized THAT IS INTIMACY. Someone who is willing to truly be there #patientshavepower | |
Anna Evangeline (she/her) @sixhips A3: Last yr on valentine's day I was recovering from surgery (not the first time for us) and he got all my favorite things from our favorite local restaurant and we had a picnic spread in bed. Always make me smile when I think about it! 😍#patientshavepower | |
Marisa Troy @JournalingIBD at your absolute worst is an amazing feeling. Changed a lot for me after that happened. #patientshavepower | |
ChronicallyJess @ChronicallyJess @Clara_Health A3: my husband slept in his truck while I was in the hospital. I didn’t even know that he did it, but he was there to hold my hand and get me to sleep, and then he was back in at 7 am for first rounds. I knew that I was lucky. ❤️ #patientshavepower | |
Christina Lizaso @btrfly12 RT @AutonomicRN: It can be terrifying living in the unknown. But at the same time, we can't be afraid of what hasn't happened yet. Otherwise it feels like you are stuck in quicksand. #patientshavepower https://t.co/lGdSMFpjMm | |
Natalie Hayden @nataliesparacio @Clara_Health A3: So many special moments, I’m just continually blown away by my husband’s ability to calm me down, never leave my side and be there when I’m too weak to stand on my own. Prob our wedding day when I was symptom free & the birth of our healthy baby. #PatientsHavePower | |
M&B Sciences @mbsciencesinc We miss you! But thanks for sharing this awesome chat!! All of our #PatientsHavePower tweeters should definitely check this out! https://t.co/AKtjdihtDn | |
Rie Lopez, MPH (she/her) @RieOfLetters @bbhomebody @Clara_Health It is also very true. You are amazing and I am so grateful that we clicked here in the Twittersphere. I just know there is someone special for you. *gentle hug* #patientshavepower | |
Amanda B Osowski @amandabosowski A3: My husband and I have wanted to start a family since the beginning of our relationship. I knew we would have challenges, but fertility has been an ongoing conversation. When we do have a child, it will be made from so much love. #PatientsHavePower #CrohnsDisease #fertility | |
Inspire @InspireIsHealth RT @BarbyIngle: A2: A2: As a chronic pain patient the hardest part of relationships is having to cancel plans or rearrange them due to symptom flares. Remembering the 5 stages of a relationship helps; forming, storming, norming, performing, adjourning #PatientsHavePower https://t.co/qnHjLZqy1v | |
AutonomicRN© @AutonomicRN A3: I think that really learning how precious life is, has brought my husband and I closer together. He saw me planning my mom's funeral, taking care of the estate and everything that goes with it. I was sick the entire time. You learn where priorities are. #patientshavepower | |
M&B Sciences @mbsciencesinc @sixhips Adorable! #PatientsHavePower https://t.co/bgQkZXTIDI | |
Ross @Rossco006 @brkthrough_crew Thanks everyone! I haven’t gone into a lot of detail but a lots been happening over the last week. When I know what’s going on I’ll you all know! #breakthroughcrew #PatientsHavePower | |
Rie Lopez, MPH (she/her) @RieOfLetters RT @AutonomicRN: It can be terrifying living in the unknown. But at the same time, we can't be afraid of what hasn't happened yet. Otherwise it feels like you are stuck in quicksand. #patientshavepower https://t.co/lGdSMFpjMm | |
ChronicallyJess @ChronicallyJess @Clara_Health A3: (cont) I felt incredibly lucky the night that my best friend, with type 1 diabetes, took my face in her hands and said “you have a chronic illness and you shouldn’t be embarrassed right now” when I was horribly sick during a night out with friends. #patientshavepower | |
M&B Sciences @mbsciencesinc @nataliesparacio Thanks for sharing this special moment Natalie! #PatientsHavePower | |
Lisa Davis Budzinski @lisadbudzinski A3 Oh that’s an easy one✨ All the wonderful friends & experiences we’ve had along the way #PatientsHavePower https://t.co/7r3g2uXNqI | |
M&B Sciences @mbsciencesinc What a guy! #PatientsHavePower https://t.co/WQldcxNOhA | |
Anna Evangeline (she/her) @sixhips A3: This is from that night - he was refilling my cryo cuff AND my champagne flute! #patientshavepower https://t.co/Hnrk4wsXXY | |
Ross @Rossco006 Hey everyone have I have to step out for an appointment I’ll be reviewing the rest of the chat later! #PatientsHavePower | |
M&B Sciences @mbsciencesinc @shawnbethea_ Hey Shawn! So pumped to see you here! #PatientsHavePower https://t.co/npGjCJ7iHG | |
Christina Lizaso @btrfly12 RT @ChronicallyJess: @Clara_Health A3: @Clara_Health A3: (cont) I felt incredibly lucky the night that my best friend, with type 1 diabetes, took my face in her hands and said “you have a chronic illness and you shouldn’t be embarrassed right now” when I was horribly sick during a night out with friends. #patientshavepower | |
Anna Evangeline (she/her) @sixhips Popping out for a meeting but hope to be back soon! #patientshavepower | |
✊🏾PolyFreeLove🌈Texasladyoflove☯️Intimacy🍑 @polyfreelove RT @ChronicSexChat: I'm bummed I'm not able to really chat today BUT wanna mention that we have a chat - #chronicsex - where we talk about all these things each Thursday night at 8 pm ET. If you want more on this topic, come join us! #PatientsHavePower | |
M&B Sciences @mbsciencesinc @Rossco006 Good luck Ross and thanks for joining! #PatientsHavePower | |
Rie Lopez, MPH (she/her) @RieOfLetters A3: During my first hospitalization and the subsequent months I couldn't walk or be alone, my husband, family, and friends used up all their vacation and sick time to be with me. That meant everything, just not being alone. #patientshavepower | |
Empowering Patients,LLC • Alison @Empoweringpts9 @ChronicallyJess @Clara_Health oooh those that sleep in the most comfortable of places because either they won't go home, or we won't allow them to! #patientshavepower | |
AutonomicRN© @AutonomicRN #chronicillness has a way of making the small things in life not seem quite so big. You learn where your priories are at. #patientshavepower | |
Ross @Rossco006 @angelee828 @Clara_Health At least I’m not the only one in a deepfreeze!!! #patientshavepower | |
M&B Sciences @mbsciencesinc Dealing with chronic illness can be incredibly lonely. Having loved ones who truly support you is so important. #PatientsHavePower https://t.co/qE9MKxRKRV | |
Rie Lopez, MPH (she/her) @RieOfLetters @Rossco006 While not there physically, I am there in spirit! #patientshavepower | |
M&B Sciences @mbsciencesinc Q4 coming shortly... anyone else feel like this chat is FLYING by!?#PatientsHavePower https://t.co/b5UPqavivB | |
Ross @Rossco006 @Clara_Health Wish I could have stayed longer but I have to run! See you everyone! #patientshavepower | |
M&B Sciences @mbsciencesinc Q4: What are your tips for a newly diagnosed patient working to learn their “new normal” when navigating relationships? #PatientsHavePower https://t.co/7oFi0490te | |
AutonomicRN© @AutonomicRN @brkthrough_crew Definitely hard conversations, but necessary. My dad had bypass surgery in November and the first thing that I made him do was fill out his #advancedirective and name me his #healthcareproxy. I have one as well. #patientshavepower | |
Lisa Davis Budzinski @lisadbudzinski @Clara_Health Yes! Unable to keep up with all the great tweets #PatientsHavePower | |
Ross @Rossco006 @bbhomebody It’s one of those in and out days! Sorry! Good seeing you though! #patientshavepower | |
Christina Lizaso @btrfly12 RT @Clara_Health: Q4: Q4: What are your tips for a newly diagnosed patient working to learn their “new normal” when navigating relationships? #PatientsHavePower https://t.co/7oFi0490te | |
Empowering Patients,LLC • Alison @Empoweringpts9 RT @AutonomicRN: #chronicillness has a way of making the small things in life not seem quite so big. You learn where your priories are at. #patientshavepower | |
Ross @Rossco006 @RieOfLetters Thanks that means a lot! I just don’t want to go today! Honestly I don’t often get nervous at my appointments! #patientshavepower | |
AutonomicRN© @AutonomicRN Having somebody by your side can make all the difference in the world! #patientshavepower https://t.co/eC0Ob26YhV | |
Amanda B Osowski @amandabosowski Q4: You should ALWAYS listen to your "gut" on what does/does not feel comfortable for you in a relationship. I found one accidentally ;) when I was not looking, and I am so grateful and lucky because I never have chosen to censor anything from my husband. #PatientsHavePower | |
Empowering Patients,LLC • Alison @Empoweringpts9 RT @Clara_Health: Q4: Q4: What are your tips for a newly diagnosed patient working to learn their “new normal” when navigating relationships? #PatientsHavePower https://t.co/7oFi0490te | |
Lisa Davis Budzinski @lisadbudzinski A4 You just said it best, “Your new normal”. Identify that, roll with it and never forget you have a lot of support figuring it out along the way✨ #PatientsHavePower https://t.co/vfD9paoFWC | |
Ross @Rossco006 Bye all! #patientshavepower | |
Amanda B Osowski @amandabosowski A4: It is in fact truly better to be alone than to be with the wrong partner (or friend, or family member). You deserve love an affection. #PatientsHavePower | |
Marisa Troy @JournalingIBD A4: Remember it takes time to adjust & there is zero pressure on you to go at a speed u aren’t comfortable with. You deserve to be loved just like everyone else, even tho it’s not uncommon to feel a little “less than” with a #chronicillness #patientshavepower | |
AutonomicRN© @AutonomicRN #patientshavepower https://t.co/6uQWnkq36c | |
Lisa Davis Budzinski @lisadbudzinski @bbhomebody Love you Pard! 💕 #PatientsHavePower | |
Emily Morgan, MPH, CHES @EmMorgan27 @Clara_Health Normal isn't the same for everyone! #chronicillness #invisibleillness unfortunately require a learning curve. Figuring out and learning to be comfortable with what works for YOU is 🔑 Being comfortable with you makes it easier to communicate with others #patientshavepower | |
Marisa Troy @JournalingIBD @amandabosowski I do believe relationships happen when you least expect it. Makes it feel magical, to some degree. #patientshavepower | |
Barby Ingle Official @BarbyIngle A4: As a chronic care patient I do wonder why someone healthy would want to be friends when I cant always be fully engaged due to my health. So most of my connections have pain or are caregivers. They get me... I get them. #PatientsHavePower https://t.co/Pssu3jy8CG | |
Christina Lizaso @btrfly12 A4: I think it is important to let your partner know they can be upset and frustrated and have their own things going on. Suppressing or hiding hurts the relationship. Find/create places that it is safe to vent. #patientshavepower | |
Christina Lizaso @btrfly12 RT @amandabosowski: A4: A4: It is in fact truly better to be alone than to be with the wrong partner (or friend, or family member). You deserve love an affection. #PatientsHavePower | |
Amanda B Osowski @amandabosowski @JournalingIBD Absolutely! My husband's mother and two aunts have #MS, so #chroniclife wasn't such a shock to his system. He is incredibly compassionate, patient and supportive - He was my best friend before I married him! #PatientsHavePower | |
Natalie Hayden @nataliesparacio @Clara_Health A4: Be open and honest, but not apologetic. If they don’t show compassion or understanding, be strong enough to say goodbye. You deserve love and you deserve a partner who sees you for all that you are. Someone who loves you for everything that makes you, you. #PatientsHavePower | |
Marisa Troy @JournalingIBD A4: Also, you don’t have to share your life story on the first date. If you feel like the other person has the ability to understand and be a true partner, let them in.. slow and steady. #patientshavepower | |
International Pain Foundation® @iPainOfficial RT @BarbyIngle: A4: A4: As a chronic care patient I do wonder why someone healthy would want to be friends when I cant always be fully engaged due to my health. So most of my connections have pain or are caregivers. They get me... I get them. #PatientsHavePower https://t.co/Pssu3jy8CG | |
iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: A4: A4: As a chronic care patient I do wonder why someone healthy would want to be friends when I cant always be fully engaged due to my health. So most of my connections have pain or are caregivers. They get me... I get them. #PatientsHavePower https://t.co/Pssu3jy8CG | |
Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: A4: A4: As a chronic care patient I do wonder why someone healthy would want to be friends when I cant always be fully engaged due to my health. So most of my connections have pain or are caregivers. They get me... I get them. #PatientsHavePower https://t.co/Pssu3jy8CG | |
AutonomicRN© @AutonomicRN I know that for me, one of my best support systems is everyone here because we can relate to one another. Don't get me wrong, I love everyone else in my life, but it is lonely and isolating at times because you can't explain what you feel or want to. #patientshavepower https://t.co/Aw70ioGMMq | |
Rie Lopez, MPH (she/her) @RieOfLetters A4: Go slowly. Be open and honest, but only to the extent you feel safe to do so. Don't succumb to the pressure, from yourself or others, to do everything you used to. Concentrate on building a solid support system, including a #mentalhealth provider. #patientshavepower | |
Christina Lizaso @btrfly12 A4: To know there are great resources and communities out there for both patient and caregivers to find support. That seeking support and asking for help are okay. #patientshavepower | |
Marisa Troy @JournalingIBD @amandabosowski It’s wonderful to find someone like that, although I’m sorry he’s had a lot of illness in his life. My boyfriend has a son with Crohn’s, so he was all too familiar with the struggle. #patientshavepower | |
Empowering Patients,LLC • Alison @Empoweringpts9 @btrfly12 THIS is important. They can't lose themselves. We all have to live our lives and it's our body. We need a venting place, as do partners/caregivers. #patientshavepower | |
M&B Sciences @mbsciencesinc Q5 is on the way!! #PatientsHavePower | |
Christina Lizaso @btrfly12 RT @Empoweringpts9: @btrfly12 THIS is important. They can't lose themselves. We all have to live our lives and it's our body. We need a venting place, as do partners/caregivers. #patientshavepower | |
M&B Sciences @mbsciencesinc Q5: When it comes to relationships, what topics would you like to see patients discussing more openly? #PatientsHavePower https://t.co/akuKkWeoor | |
AutonomicRN© @AutonomicRN A4: Be gentle with yourself. You aren't going to learn everything about your condition in one day. Take things one step at a time. It will all fall into place eventually. Also be aware that the "new-normal" is constantly changing. Be flexible and have faith #patientshavepower | |
Barby Ingle Official @BarbyIngle RT @Clara_Health: Q5: Q5: When it comes to relationships, what topics would you like to see patients discussing more openly? #PatientsHavePower https://t.co/akuKkWeoor | |
Christina Lizaso @btrfly12 RT @Clara_Health: Q5: Q5: When it comes to relationships, what topics would you like to see patients discussing more openly? #PatientsHavePower https://t.co/akuKkWeoor | |
Rie Lopez, MPH (she/her) @RieOfLetters I love this! It can be so hard to let go of relationships we once held dear, but it is an important step in having the love and support needed. If you are going to be on this road, be with the ones that want to be there with you. #PatientsHavePower https://t.co/d8ZPZV3igp | |
AutonomicRN© @AutonomicRN Absolutely! #patientshavepower https://t.co/THvS1Yj5BS | |
Barby Ingle Official @BarbyIngle A5: Access to care, less judgement on what treatments others use if it different than your own, and positive supportive posts would be nice to see more #PatientsHavePower https://t.co/Fa1NrrRJPZ | |
Marisa Troy @JournalingIBD A5: the impact #chronicillness can have on intimacy, family planning, and how some times with both parties, emotions can run wild. #patientshavepower | |
Amanda B Osowski @amandabosowski @JournalingIBD But what an incredible and meaning connection for you both. I am sure it doesn't come without obstacles, but I also imagine you both can offer/provide each other so much. #PatientsHavePower | |
ChronicallyJess @ChronicallyJess A5: at some point we have got to address the elephant in the room: sex and sexuality. It’s important, impactful, and so big on quality of life! #patientshavepower | |
M&B Sciences @mbsciencesinc Know what you're worth and accept nothing less. https://t.co/rwy3cVruA8 | |
iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: A5: A5: Access to care, less judgement on what treatments others use if it different than your own, and positive supportive posts would be nice to see more #PatientsHavePower https://t.co/Fa1NrrRJPZ | |
Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: A5: A5: Access to care, less judgement on what treatments others use if it different than your own, and positive supportive posts would be nice to see more #PatientsHavePower https://t.co/Fa1NrrRJPZ | |
Christina Lizaso @btrfly12 RT @RieOfLetters: I love this! It can be so hard to let go of relationships we once held dear, but it is an important step in having the love and support needed. If you are going to be on this road, be with the ones that want to be there with you. #PatientsHavePower https://t.co/d8ZPZV3igp | |
Amanda B Osowski @amandabosowski THIS IS WHY WE ARE FRIENDS <3 https://t.co/WEKsyd5mj4 | |
Rie Lopez, MPH (she/her) @RieOfLetters Yes! https://t.co/oeE4d88VYR | |
Lisa Davis Budzinski @lisadbudzinski Sorry tweeps, have to call Drs office to beg for my eScriot to be sent to the pharmacy #patientshavepower | |
Christina Lizaso @btrfly12 RT @BarbyIngle: A5: A5: Access to care, less judgement on what treatments others use if it different than your own, and positive supportive posts would be nice to see more #PatientsHavePower https://t.co/Fa1NrrRJPZ | |
Marisa Troy @JournalingIBD A5: Also, experiences on planning a wedding/honeymoon with an unpredictable #chronicillness #patientshavepower | |
International Pain Foundation® @iPainOfficial RT @BarbyIngle: A5: A5: Access to care, less judgement on what treatments others use if it different than your own, and positive supportive posts would be nice to see more #PatientsHavePower https://t.co/Fa1NrrRJPZ | |
Christina Lizaso @btrfly12 RT @JournalingIBD: A5: A5: the impact #chronicillness can have on intimacy, family planning, and how some times with both parties, emotions can run wild. #patientshavepower | |
Inspire @InspireIsHealth RT @Clara_Health: Q5: Q5: When it comes to relationships, what topics would you like to see patients discussing more openly? #PatientsHavePower https://t.co/akuKkWeoor | |
Natalie Hayden @nataliesparacio @Clara_Health A5: I feel like when you’re the patient it’s a lot of taking and not much giving. I never feel like I can truly communicate my appreciation to my husband for his support day in & day out. There isn’t much out there in the way of support for IBD caretakers. #PatientsHavePower | |
Christina Lizaso @btrfly12 RT @ChronicallyJess: A5: at some point we have got to address the elephant in the room: A5: at some point we have got to address the elephant in the room: sex and sexuality. It’s important, impactful, and so big on quality of life! #patientshavepower | |
Rie Lopez, MPH (she/her) @RieOfLetters RT @BarbyIngle: A5: A5: Access to care, less judgement on what treatments others use if it different than your own, and positive supportive posts would be nice to see more #PatientsHavePower https://t.co/Fa1NrrRJPZ | |
Marisa Troy @JournalingIBD @amandabosowski Absolutely! #patientshavepower | |
Autoimmune Association @AutoimmuneAssoc RT @Clara_Health: Q5: Q5: When it comes to relationships, what topics would you like to see patients discussing more openly? #PatientsHavePower https://t.co/akuKkWeoor | |
AutonomicRN© @AutonomicRN A5: The day to day struggles that can occur and how to deal with them. How do you get to a point where you find the courage to really talk about your hopes, dreams and also fears...we shield so many people from the reality of our conditions. #patientshavepower | |
Marisa Troy @JournalingIBD Yes! Just wrote an article about how #chronic illness can sometimes make you feel selfish because of those things. Hope our partners & careguvers know what a huge difference they make in our lives. I say “thank you” more than anyone 😂 https://t.co/DVep2Llx9A | |
Angela Cohen @angelee828 A4: IMO In any type of relationship honest communication is important as is trust. Trust yourself. And while compromise is needed at times, don’t settle. #PatientsHavePower https://t.co/gdHMBH6Gra | |
Christina Lizaso @btrfly12 RT @AutonomicRN: A5: A5: The day to day struggles that can occur and how to deal with them. How do you get to a point where you find the courage to really talk about your hopes, dreams and also fears...we shield so many people from the reality of our conditions. #patientshavepower | |
Marisa Troy @JournalingIBD @AutonomicRN So true! #patientshavepower | |
Empowering Patients,LLC • Alison @Empoweringpts9 RT @Clara_Health: Q5: Q5: When it comes to relationships, what topics would you like to see patients discussing more openly? #PatientsHavePower https://t.co/akuKkWeoor | |
Amanda B Osowski @amandabosowski A5: @nataliesparacio - nail on head. Support for caregivers. Conversations about intimacy with #IBD patients. Suggestions on how to keep busy/interact during #hospitalizations for both the caregiver and the couple as a unit. #PatientsHavePower | |
M&B Sciences @mbsciencesinc Can't believe there's only 10 minutes left...we need more time!! #PatientsHavePower https://t.co/APfBHttqgx | |
M&B Sciences @mbsciencesinc Q6: What is something you will commit to doing for a loved one this month to show them you care? #PatientsHavePower https://t.co/9Ekc02IIzg | |
Amanda B Osowski @amandabosowski YESSS https://t.co/Vi7hqL5JPf | |
AutonomicRN© @AutonomicRN @RieOfLetters OMG, tears are welling up in my eyes reading these two posts. So true! #patientshavepower | |
Amanda B Osowski @amandabosowski RT @nataliesparacio: @Clara_Health A5: @Clara_Health A5: I feel like when you’re the patient it’s a lot of taking and not much giving. I never feel like I can truly communicate my appreciation to my husband for his support day in & day out. There isn’t much out there in the way of support for IBD caretakers. #PatientsHavePower | |
Rie Lopez, MPH (she/her) @RieOfLetters A5: I know I saw this already, but navigating the bedroom is such a challenge and we don't talk about it nearly enough. Let's face it, intimate moments require some degree of creativity because the 'standard' advice doesn't work quite as advertised. #patientshavepower | |
Marisa Troy @JournalingIBD @EmMorgan27 So so so true! Great points! #patientshavepower | |
Amanda B Osowski @amandabosowski Yes! I had a destination wedding in September 2017 - there were definitely things that were hard to navigate and extra things I double/triple prepared for. Happy to answer Q's anytime. #PatientsHavePower https://t.co/zZhUcqtVdz | |
M&B Sciences @mbsciencesinc RT @RieOfLetters: A5: A5: I know I saw this already, but navigating the bedroom is such a challenge and we don't talk about it nearly enough. Let's face it, intimate moments require some degree of creativity because the 'standard' advice doesn't work quite as advertised. #patientshavepower | |
Christina Lizaso @btrfly12 RT @angelee828: A4: A4: IMO In any type of relationship honest communication is important as is trust. Trust yourself. And while compromise is needed at times, don’t settle. #PatientsHavePower https://t.co/gdHMBH6Gra | |
Christina Lizaso @btrfly12 RT @amandabosowski: A5: A5: @nataliesparacio - nail on head. Support for caregivers. Conversations about intimacy with #IBD patients. Suggestions on how to keep busy/interact during #hospitalizations for both the caregiver and the couple as a unit. #PatientsHavePower | |
Christina Lizaso @btrfly12 RT @Clara_Health: Q6: Q6: What is something you will commit to doing for a loved one this month to show them you care? #PatientsHavePower https://t.co/9Ekc02IIzg | |
Amanda B Osowski @amandabosowski A6: I enjoy secretly leaving post-it notes with quotes and thank yous and love yous for my husband in our apartment/car. He always finds these and smiles. small gesture/big expression of gratitude. #PatientsHavePower | |
Barby Ingle Official @BarbyIngle RT @Clara_Health: Q6: Q6: What is something you will commit to doing for a loved one this month to show them you care? #PatientsHavePower https://t.co/9Ekc02IIzg | |
Marisa Troy @JournalingIBD @amandabosowski Wow! A destination wedding with a #chronicillness ?! That must have taken a lot of planning but hope it was incredibly special. I always wanted to have a super intimate wedding somewhere on an island but with #IBD, seems like a pipe dream. #patientshavepower | |
AutonomicRN© @AutonomicRN A6: I'm going to make it a point to thanks my spouse for all that he does. I don't think I say it enough. He deserves kudos and some love too! #patientshavepower | |
Inspire @InspireIsHealth RT @JournalingIBD: A5: A5: Also, experiences on planning a wedding/honeymoon with an unpredictable #chronicillness #patientshavepower | |
Natalie Hayden @nataliesparacio @Clara_Health A6: Staying on top of medication and personal self care which I tend to place less emphasis on now that I’m a mom, because taking the reins and managing my disease the best I can benefits my husband and son more than anything. #PatientsHavePower | |
Amanda B Osowski @amandabosowski Absolutely - this offer goes to anyone! DM me and we can connect via email. #PatientsHavePower https://t.co/1GBlmhwpXR | |
Barby Ingle Official @BarbyIngle A6: I am going to do something w my husband who is my caregiver to honor my dad's memory this coming Sun, the day my dad went to heaven. We also just helped my FIL move to AZ from MO so he can have more help and support from us as his health declines. #PatientsHavePower https://t.co/GrbJL5036W | |
Empowering Patients,LLC • Alison @Empoweringpts9 @bbhomebody Where do these conversations begin? With the primary specialist that treats your illness? who brings it up? #patientshavepower | |
Marisa Troy @JournalingIBD @amandabosowski Appreciate it! May take you up on that. :) #patientshavepower | |
M&B Sciences @mbsciencesinc RT @amandabosowski: A6: A6: I enjoy secretly leaving post-it notes with quotes and thank yous and love yous for my husband in our apartment/car. He always finds these and smiles. small gesture/big expression of gratitude. #PatientsHavePower | |
International Pain Foundation® @iPainOfficial RT @BarbyIngle: A6: A6: I am going to do something w my husband who is my caregiver to honor my dad's memory this coming Sun, the day my dad went to heaven. We also just helped my FIL move to AZ from MO so he can have more help and support from us as his health declines. #PatientsHavePower https://t.co/GrbJL5036W | |
M&B Sciences @mbsciencesinc @nataliesparacio Totally. You can't pour from an empty cup! Take care of yourself so that you can be all you can be to those you love. #patientshavepower | |
Lisa Davis Budzinski @lisadbudzinski @amandabosowski This is my favorite thing to do as well! #PatientsHavePower | |
Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: A6: A6: I am going to do something w my husband who is my caregiver to honor my dad's memory this coming Sun, the day my dad went to heaven. We also just helped my FIL move to AZ from MO so he can have more help and support from us as his health declines. #PatientsHavePower https://t.co/GrbJL5036W | |
iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: A6: A6: I am going to do something w my husband who is my caregiver to honor my dad's memory this coming Sun, the day my dad went to heaven. We also just helped my FIL move to AZ from MO so he can have more help and support from us as his health declines. #PatientsHavePower https://t.co/GrbJL5036W | |
Lisa Davis Budzinski @lisadbudzinski @brkthrough_crew Done ✅ and I’m back! 😉 #PatientsHavePower | |
Empowering Patients,LLC • Alison @Empoweringpts9 A6: I do it often, not just *this* month. I check in with them. We discuss funny things. Have funny video "wars." Play online games. :-) #patientshavepower | |
Christina Lizaso @btrfly12 RT @amandabosowski: A6: A6: I enjoy secretly leaving post-it notes with quotes and thank yous and love yous for my husband in our apartment/car. He always finds these and smiles. small gesture/big expression of gratitude. #PatientsHavePower | |
Marisa Troy @JournalingIBD A6: my bf has been dealing with some of his own health “issues” that are hopefully only temporary. Plan on being by his side 24/7 like he always is with me. Not used to being the caregiver but he deserves the best. #PatientsHavePower | |
M&B Sciences @mbsciencesinc @BarbyIngle That's so lovely. What did your dad like to do most? #patientshavepower | |
Inspire @InspireIsHealth @JournalingIBD A5: Topics like these are tailor made for sharing by patients/caregivers in healthcare social networks, ours and others. We see the exchange of practical health hacks, many related to managing personal relationships, across our chronic illness groups. #patientshavepower | |
Amanda B Osowski @amandabosowski @JournalingIBD Yes & yes. Please don't give up on ur dream. We had 40 ppl & it was perfect. It actually rained & ceremony was indoors, but we had a vacay with our best friends/family. Also, we were in the #outerbanks, NC, so not abroad! (American Dr/Hosp!) #PatientsHavePower | |
Christina Lizaso @btrfly12 RT @nataliesparacio: @Clara_Health A6: @Clara_Health A6: Staying on top of medication and personal self care which I tend to place less emphasis on now that I’m a mom, because taking the reins and managing my disease the best I can benefits my husband and son more than anything. #PatientsHavePower | |
Marisa Troy @JournalingIBD @lisadbudzinski @amandabosowski I do the same thing. Such a small thing that means so much. #patientshavepower | |
Amanda B Osowski @amandabosowski @JournalingIBD Absolutely! Feel free to DM me. #PatientsHavePower | |
Lisa Davis Budzinski @lisadbudzinski @bbhomebody And that my friends, is my fabulous partner/colleague and dear friend! You tell it girl! #PatientsHavePower | |
Amanda B Osowski @amandabosowski @lisadbudzinski Love! #greatminds #PatientsHavePower | |
Lisa Davis Budzinski @lisadbudzinski RT @Clara_Health: @nataliesparacio Totally. You can't pour from an empty cup! Take care of yourself so that you can be all you can be to those you love. #patientshavepower | |
M&B Sciences @mbsciencesinc RT @JournalingIBD: @lisadbudzinski @amandabosowski I do the same thing. Such a small thing that means so much. #patientshavepower | |
Christina Lizaso @btrfly12 RT @teaminspire: @JournalingIBD A5: @JournalingIBD A5: Topics like these are tailor made for sharing by patients/caregivers in healthcare social networks, ours and others. We see the exchange of practical health hacks, many related to managing personal relationships, across our chronic illness groups. #patientshavepower | |
Marisa Troy @JournalingIBD @amandabosowski Sounds wonderful! That was my only hesitation about an island..need to know American Drs are nearby. #patientshavepower | |
AutonomicRN© @AutonomicRN I slip quotes into my husband's lunch pail that he takes to work everyday. It's something little, that means a lot. #patientshavepower https://t.co/gAspBu6IBX | |
UOAA @UOAA RT @JournalingIBD: A3: A3: When I was in the hospital and couldn’t get out of bed to empty my #ostomy, my bf helped me without any hesitation. This continued for a while and it was then that I realized THAT IS INTIMACY. Someone who is willing to truly be there #patientshavepower | |
Lisa Davis Budzinski @lisadbudzinski RT @teaminspire: @JournalingIBD A5: @JournalingIBD A5: Topics like these are tailor made for sharing by patients/caregivers in healthcare social networks, ours and others. We see the exchange of practical health hacks, many related to managing personal relationships, across our chronic illness groups. #patientshavepower | |
M&B Sciences @mbsciencesinc CT: Any final thoughts? Has this chat taught you something new? Inspired you to take action? What are your takeaways? #PatientsHavePower https://t.co/5HAzzU8K8D | |
Barby Ingle Official @BarbyIngle My dad loved church, comedy shows (being onstage and in audience), presenting at pain conferences, Sharing his story of #Diabeties type2, so others can be saved before they lose their life as he did. He was an amazing dad too. #PatientsHavePower https://t.co/icDuGSlZtt | |
Lisa Davis Budzinski @lisadbudzinski RT @Clara_Health: CT: CT: Any final thoughts? Has this chat taught you something new? Inspired you to take action? What are your takeaways? #PatientsHavePower https://t.co/5HAzzU8K8D | |
Rie Lopez, MPH (she/her) @RieOfLetters Absolutely!! Medications have side-effects and dealing with the weight-gain, fatigue, nausea, etc. on top of something like #chronicpain ... It doesn't necessarily make things easy. That "I'm tired" trope isn't a joke for us. #patientshavepower https://t.co/RxwceDX0G7 | |
AutonomicRN© @AutonomicRN @bbhomebody @brkthrough_crew I didn't know that you did L&D too! The stories we could share!!! #patientshavepower | |
Lilly Stairs @LillyStairs Sorry to have missed the chat everyone!! Can’t wait to go back and see this convo. It looks AMAZING!!! #PatientsHavePower | |
Marisa Troy @JournalingIBD @Clara_Health Is it seriously 4pm already? Wow! That flew by. #patientshavepower | |
Barby Ingle Official @BarbyIngle CT: What matters in life is human connection, so make your connections the best they can be or cut the cord on it if it is not healthy for you #PatientsHavePower https://t.co/lwOMmSJrUX | |
M&B Sciences @mbsciencesinc @BarbyIngle Sounds like an incredible man. We'll keep him in our hearts as we help share stories of patient power. Thank you for sharing! #patientshavepower | |
M&B Sciences @mbsciencesinc Thank you for joining us to talk chronic illness and relationships. As always, what an amazing discussion! Y’all ROCK! #PatientsHavePower https://t.co/06s2gPxgEp | |
Lisa Davis Budzinski @lisadbudzinski CT Don’t let love slip away. Keep it alive everyday. Whether it be IRL or online✨ #patientshavepower | |
iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: CT: CT: What matters in life is human connection, so make your connections the best they can be or cut the cord on it if it is not healthy for you #PatientsHavePower https://t.co/lwOMmSJrUX | |
Christina Lizaso @btrfly12 Thanks so much to everyone for sharing of yourselves on this chat. Honored company. #patientshavepower | |
Natalie Hayden @nataliesparacio @Clara_Health These chats are always inspiring. A reminder we are never alone in our struggles and worries, that we can be empowered by a group of people who live our reality & get it. By talking and sharing we can get the convo started and keep it going! Thanks friends!! 💜#PatientsHavePower | |
Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: CT: CT: What matters in life is human connection, so make your connections the best they can be or cut the cord on it if it is not healthy for you #PatientsHavePower https://t.co/lwOMmSJrUX | |
Marisa Troy @JournalingIBD CT: love learning from the experiences of others. Gives me hope and also makes me realize some of the silly things I’ve been upset about don’t matter much. Thanks to everyone for sharing. Know it isn’t easy. #PatientsHavePower | |
Amanda B Osowski @amandabosowski @RieOfLetters @Clara_Health YESS #PatientsHavePower | |
International Pain Foundation® @iPainOfficial RT @BarbyIngle: CT: CT: What matters in life is human connection, so make your connections the best they can be or cut the cord on it if it is not healthy for you #PatientsHavePower https://t.co/lwOMmSJrUX | |
Lisa Davis Budzinski @lisadbudzinski Everyonehave an amazing day no matter where you are✨ #patientshavepower | |
Empowering Patients,LLC • Alison @Empoweringpts9 Thanks to @Clara_Health & @brkthrough_crew for an insightful chat! #patientshavepower Now to lurk on the #Crstrialchat | |
Amanda B Osowski @amandabosowski RT @nataliesparacio: @Clara_Health These chats are always inspiring. A reminder we are never alone in our struggles and worries, that we can be empowered by a group of people who live our reality & get it. By talking and sharing we can get the convo started and keep it going! Thanks friends!! 💜#PatientsHavePower | |
Christina Lizaso @btrfly12 RT @BarbyIngle: CT: CT: What matters in life is human connection, so make your connections the best they can be or cut the cord on it if it is not healthy for you #PatientsHavePower https://t.co/lwOMmSJrUX | |
M&B Sciences @mbsciencesinc @nataliesparacio Y'all rock and are our daily inspiration for the work we do here. Thank you so much! #patientshavepower | |
AutonomicRN© @AutonomicRN CT: Just because you have a #chronicillness, doesn't mean that life has to be put on hold. We can adapt what we do and also make sure that we have a great support system at our side! We are still human, that definitely doesn't change with an illness. #patientshavepower | |
Amanda B Osowski @amandabosowski RT @JournalingIBD: CT: CT: love learning from the experiences of others. Gives me hope and also makes me realize some of the silly things I’ve been upset about don’t matter much. Thanks to everyone for sharing. Know it isn’t easy. #PatientsHavePower | |
Amanda B Osowski @amandabosowski RT @Empoweringpts9: Thanks to @Clara_Health & @brkthrough_crew for an insightful chat! #patientshavepower Now to lurk on the #Crstrialchat | |
M&B Sciences @mbsciencesinc RT @nataliesparacio: @Clara_Health These chats are always inspiring. A reminder we are never alone in our struggles and worries, that we can be empowered by a group of people who live our reality & get it. By talking and sharing we can get the convo started and keep it going! Thanks friends!! 💜#PatientsHavePower | |
M&B Sciences @mbsciencesinc Preach. https://t.co/QFkKhxRiHn | |
MentalHealth Guy @mymntlhealth RT @RieOfLetters: A4: A4: Go slowly. Be open and honest, but only to the extent you feel safe to do so. Don't succumb to the pressure, from yourself or others, to do everything you used to. Concentrate on building a solid support system, including a #mentalhealth provider. #patientshavepower | |
Christina Lizaso @btrfly12 RT @lisadbudzinski: CT Don’t let love slip away. Keep it alive everyday. Whether it be IRL or online✨ #patientshavepower | |
Amanda B Osowski @amandabosowski THIS. YES YES YES one thousand times yes. Thank you @autonomicRN!! #PatientsHavePower https://t.co/tBrhZU6KuM | |
Empowering Patients,LLC • Alison @Empoweringpts9 oops. #crstrialschat https://t.co/LdblKSyne6 | |
Christina Lizaso @btrfly12 RT @nataliesparacio: @Clara_Health These chats are always inspiring. A reminder we are never alone in our struggles and worries, that we can be empowered by a group of people who live our reality & get it. By talking and sharing we can get the convo started and keep it going! Thanks friends!! 💜#PatientsHavePower | |
M&B Sciences @mbsciencesinc RT @Empoweringpts9: Thanks to @Clara_Health & @brkthrough_crew for an insightful chat! #patientshavepower Now to lurk on the #Crstrialchat | |
Marisa Troy @JournalingIBD @Empoweringpts9 @Clara_Health @brkthrough_crew Yes! Thanks for the chat. #patientshavepower | |
Christina Lizaso @btrfly12 RT @JournalingIBD: CT: CT: love learning from the experiences of others. Gives me hope and also makes me realize some of the silly things I’ve been upset about don’t matter much. Thanks to everyone for sharing. Know it isn’t easy. #PatientsHavePower | |
Amanda B Osowski @amandabosowski CT: This chat has encouraged me to connect with others openly on social media. Screw taboo, let's talk!! #PatientsHavePower | |
Empowering Patients,LLC • Alison @Empoweringpts9 Oops. #crstrialschat #patientshavepower https://t.co/AGbLZPuJ5R | |
AutonomicRN© @AutonomicRN Thank you @Clara_Health and @brkthrough_crew for an AMAZING chat! Can't hardly wait for the next one! #patientshavepower | |
Christina Lizaso @btrfly12 RT @AutonomicRN: CT: CT: Just because you have a #chronicillness, doesn't mean that life has to be put on hold. We can adapt what we do and also make sure that we have a great support system at our side! We are still human, that definitely doesn't change with an illness. #patientshavepower | |
Rie Lopez, MPH (she/her) @RieOfLetters CT: There are definitely some areas that we, as patients and caregivers, can do more to support each other. I think there are also opportunities where some of us can collaborate, ahem, @bbhomebody , to educate. #patientshavepower | |
M&B Sciences @mbsciencesinc RT @amandabosowski: CT: CT: This chat has encouraged me to connect with others openly on social media. Screw taboo, let's talk!! #PatientsHavePower | |
Amanda B Osowski @amandabosowski @JournalingIBD YES! Me too! There are actually MANY USA #destinationwedding spots where you can get married on the beach and never leave the country! #PatientsHavePower | |
Angela Cohen @angelee828 Thanks @Clara_Health for yet another fantastic #PatientsHavePower chat!! | |
AutonomicRN© @AutonomicRN @bbhomebody @brkthrough_crew I’ve worked pretty much every acute care area and also some home health and hospice...lots of stories! #patientshavepower | |
Rie Lopez, MPH (she/her) @RieOfLetters @AutonomicRN Gentle hugs to you, Kim. Thank you for all you do. You definitely make my day a little brighter and I know you do the same for so many of us. Thank you for traveling this road with me. #patientshavepower | |
AutonomicRN© @AutonomicRN @brkthrough_crew Thank you :) #patientshavepower | |
Marisa Troy @JournalingIBD @amandabosowski So, so good to know! Thank you! #patientshavepower | |
AutonomicRN© @AutonomicRN @RieOfLetters Oh, Rie, that is so sweet! You are an inspiration to many also. Thank you for being on this journey too! #patientshavepower | |
Heidi Grabenstatter @PatientIntv Sorry I missed connecting with the #PatientsHavePower crew. The campus internet isn't cooperating. Thanks for sharing your stories. | |
M&B Sciences @mbsciencesinc @angelee828 Thank YOU for joining! #PatientsHavePower | |
M&B Sciences @mbsciencesinc RT @AutonomicRN: Thank you @Clara_Health and @brkthrough_crew for an AMAZING chat! Can't hardly wait for the next one! #patientshavepower |
#PatientsHavePower content from Twitter.