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#PatientsHavePower Transcript

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

ProfileTweet
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.