#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients. |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
 | Parijat - On 🧵s & 🐘 & 💙sky @ParijatDesh RT @ParijatDesh: Who you trust during #infertility , your #highriskpregnancy or when you have a #baby in the #NICU can make or break your experience. The 3 main places you must make sure to place your trust so you don't have any guilt or regret going forward. https://t.co/Z85rPhRckF #patientchat https://t.co/rgBT1hfcGU |
| Patient Chat @patientchat I’m Kara from @power4patients and I'm excited to be moderating today's #patientchat |
| Patient Chat @patientchat Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/6INB5Pmjv3 #patientchat |
 | Maya Northen Augelli @mayanorthen Hi all, Maya from Philly here. Founder of #SpreadHopeProject, and advocate for mental health, IBS, and migraines. #patientchat |
 | Kimberly Amelia @fireflyrn84 Hey all, it's been a loooonnnggg time since I've been on a #patientchat with everyone! Kim here from Wisconsin. #raredisease and #chronicillness advocate and #blogger |
 | Kevin Freiert @K_SalemOaks Kevin from CT here. This will be a nice finish to a week that has featured these concerns in many ways. #SPM2018 #NORDSummit #GGSummit @savvy_coop #patientchat @SalemOaks |
| Kimberly Amelia @fireflyrn84 @K_SalemOaks @savvy_coop @SalemOaks Hi Kevin! #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is The Emotional Impact of Serious Illness https://t.co/N3sZPrvblA #patientchat https://t.co/jRFOffr1dx |
 | Alan Brewington @abrewi3010 Hi, my name is Alan & I come from the land of exhaustion #patientchat |
| Kimberly Amelia @fireflyrn84 @abrewi3010 Hey Alan...good to "see" you. I believe I'm from the land of exhaustion as well. #patientchat |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
 | Heather McCullen @H_SalemOaks Hi #patientchat I’m here for a second. |
| Kimberly Amelia @fireflyrn84 @H_SalemOaks good to see you! #patientchat |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Patient Chat @patientchat T1: Many patients feel overwhelmed after a major diagnosis. What can help? What can you do to take control? #patientchat https://t.co/ZBTU235be9 |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey HI! Tagging in some friends @JFreemanDaily @1111linno @HurtBlogger @SaraRiggare who know this topic from lived experience! Chat deets: https://t.co/ZnBAq0Dv3l #patientchat |
 | Lisa Davis Budzinski @lisadbudzinski RT @patientchat: Today's #patientchat topic is The Emotional Impact of Serious Illness https://t.co/N3sZPrvblA #patientchat https://t.co/jRFOffr1dx |
| Kimberly Amelia @fireflyrn84 @K_SalemOaks @savvy_coop @SalemOaks I've been really busy with #dysautonomiaawarenessmonth and being sick! You should see more of me :) #patientchat |
 | Patient Empowerment Network @power4patients RT @patientchat: T1: T1: Many patients feel overwhelmed after a major diagnosis. What can help? What can you do to take control? #patientchat https://t.co/ZBTU235be9 |
| Patient Empowerment Network @power4patients RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage with others on the topic. |
| Kevin Freiert @K_SalemOaks T1:I have seen over and over that people who find an outlet for their thoughts and emotions have been able to adapt and thrive. Writing, drawing, talking all seem to help. #SPM2018 #NORDSummit #GGSummit @savvy_coop #patientchat @SalemOaks |
 | Laurie Reed @LReedptadvocate @patientchat T1: Find your support group. This is hard but you must recognize that you cannot get through this alone. Let people help -- they want to help. This allows you to focus on you. #patientchat |
| Maya Northen Augelli @mayanorthen A1: First, I learned as much about my diagnosis as I could (from reliable sources of course). That helped me understand it better, ask the right questions, feel knowledgeable in talking about treatment options. #patientchat |
| Alan Brewington @abrewi3010 A1 our disease is chronic but our lives are in the moment. I live my life in the hopes of good despite the negative #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @K_SalemOaks: T1:I have seen over and over that people who find an outlet for their thoughts and emotions have been able to adapt and thrive. Writing, drawing, talking all seem to help. #SPM2018 #NORDSummit #GGSummit @savvy_coop #patientchat @SalemOaks |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @patientchat: T1: T1: Many patients feel overwhelmed after a major diagnosis. What can help? What can you do to take control? #patientchat https://t.co/ZBTU235be9 |
| Kimberly Amelia @fireflyrn84 T1: Just focus on here and now. Don't look at the whole ball of wax and everything that is involved. Focus on the next breath, the next moment, and what you need to do to get through the day. That's how to start. Baby steps, it's hard but it can be done. #patientchat |
| Heather McCullen @H_SalemOaks @K_SalemOaks @savvy_coop @SalemOaks Such a busy couple of weeks In addition to all that, #pccds2018 @pccdsln, @AmDiabetesAssn TourdeCure, and @RareDRev Science for Rare Warriors next weekend. I’ll sleep in November! #patientchat |
| Patient Empowerment Network @power4patients T1: Here's a blog post we wrote for patients facing a #cancer diagnosis: https://t.co/qXZCJbJKBQ #patientchat |
| Patient Empowerment Network @power4patients RT @LReedsbooks: @patientchat T1: @patientchat T1: Find your support group. This is hard but you must recognize that you cannot get through this alone. Let people help -- they want to help. This allows you to focus on you. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski Hello everyone! Lisa here from Florida & @Cpnervecenter with my fantabulous colleague @bbhomebody. We advocate for #CentralPainSyndrome and #intractablepain that can truly cause psychological war mentally due to the physical aspects. #patientchat |
 | Melissa VanHouten @melissarvh Find as much info re your illness as possible from credible sources, join a support group, talk to trusted loved ones/friends, & accept help when needed. Most importantly, give it time. It may seem as if you will never find your footing, but you will. #PatientChat |
| Alan Brewington @abrewi3010 RT @power4patients: T1: Here's a blog post we wrote for patients facing a #cancer diagnosis: T1: Here's a blog post we wrote for patients facing a #cancer diagnosis: https://t.co/qXZCJbJKBQ #patientchat |
| Kevin Freiert @K_SalemOaks T1: Find a community - you are not alone! #SPM2018 #NORDSummit #GGSummit @savvy_coop #patientchat @SalemOaks @wegohealth |
| Kimberly Amelia @fireflyrn84 @abrewi3010 Same here! We have to focus on something positive to keep going. We need to have a support system. All of it impacts our #qualityoflife #patientchat |
| Maya Northen Augelli @mayanorthen A1: I also talked about it w/those I trusted (i.e. close family, best friend). It helped me get used to fully acknowledging my diagnosis, and what it meant. Including them in the convo also helped, in case there were times I wasn't fully able to process info, etc. #patientchat |
| Patient Empowerment Network @power4patients @fireflyrn84 Excellent advice. As you say, hard to do sometimes but helps a lot #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @power4patients: T1: Here's a blog post we wrote for patients facing a #cancer diagnosis: T1: Here's a blog post we wrote for patients facing a #cancer diagnosis: https://t.co/qXZCJbJKBQ #patientchat |
| Lisa Davis Budzinski @lisadbudzinski T1 Learn all you can regarding your diagnosis. Find others (your tribe 😉) with similar condition. You will need the emotional support while learning. #PatientChat |
| Heather McCullen @H_SalemOaks T1: Take a minute to breath and absorb. You shouldn’t ignore your diagnosis, but you don’t have to do everything today #patientchat |
| Maya Northen Augelli @mayanorthen Yes, on the give it time! I think talking about it with loved ones helped. But it takes a while to adjust. #patientchat |
| Alan Brewington @abrewi3010 RT @fireflyrn84: @abrewi3010 Same here! We have to focus on something positive to keep going. We need to have a support system. All of it impacts our #qualityoflife #patientchat |
| Kimberly Amelia @fireflyrn84 With a rare disease and any diagnosis for that matter, we feel so alone initially like we are the only ones going through this. Once the dust settles, you will find out that there are others and they are some of the best support that you can get. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @K_SalemOaks: T1: T1: Find a community - you are not alone! #SPM2018 #NORDSummit #GGSummit @savvy_coop #patientchat @SalemOaks @wegohealth |
| Patient Chat @patientchat T2: Have you spoken with your doctor about the emotional impacts of your health condition? Why or why not? #patientchat https://t.co/2TvlCc4SMt |
| Lisa Davis Budzinski @lisadbudzinski RT @melissarvh: Find as much info re your illness as possible from credible sources, join a support group, talk to trusted loved ones/friends, & accept help when needed. Most importantly, give it time. It may seem as if you will never find your footing, but you will. #PatientChat |
| Kimberly Amelia @fireflyrn84 @lisadbudzinski @Cpnervecenter @bbhomebody Lisa!!! #patientchat |
| Patient Chat @patientchat RT @H_SalemOaks: T1: T1: Take a minute to breath and absorb. You shouldn’t ignore your diagnosis, but you don’t have to do everything today #patientchat |
| Kimberly Amelia @fireflyrn84 @lisadbudzinski #LadiesOfRare #patientchat |
| Heather McCullen @H_SalemOaks @LReedsbooks @patientchat And on the flip side, don’t be afraid to tell your support network when you need to be alone to rest. @JamieRoger8 gets it. #patientchat |
| Maya Northen Augelli @mayanorthen This is super important. Everyone goes at their own pace, to some extent. A lot depends on our personalities. Some need to sit quietly with it, some need to jump right in w/ action. #patientchat |
| Alan Brewington @abrewi3010 A1 my first PT spent a fair amount of time reminding me that I’m “lots of hurt so I’ve earned the right to bad days/weeks”. Helped me with acceptance & with continuing to smile #patientchat |
| Patient Empowerment Network @power4patients @H_SalemOaks Yoga can be a great way to help do exactly what you suggest. Here's a video to help guide you through it: https://t.co/w73yyWp2JG #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @patientchat: T2: T2: Have you spoken with your doctor about the emotional impacts of your health condition? Why or why not? #patientchat https://t.co/2TvlCc4SMt |
| Lisa Davis Budzinski @lisadbudzinski T1 Many find pain psychologists extremely helpful due to being so overwhelmed at your most vulnerable time. https://t.co/ItxLDMgweh @BethDarnall #PatientChat |
| Lisa Davis Budzinski @lisadbudzinski @fireflyrn84 @Cpnervecenter @bbhomebody Babe!!! 💕 #patientchat |
| Kimberly Amelia @fireflyrn84 T2: We have spoken about the emotional impact. He actually brought it up, saying that every time he thought of what I was going through, it made him want to cry. He wanted to know how I was coping. I was just shut down and wanted to push the world away #patientchat |
| Maya Northen Augelli @mayanorthen A2: My main condition is a mood cycling disorder, so I have basically no choice but to talk about the emotional impact! :-) Though w/my therapist, who's my primary healthcare professional for treating it. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @fireflyrn84 Always good to see one of my #LOR Ladies of Rare 💕 #PatientChat |
| Alan Brewington @abrewi3010 A2 Yes bc I already had a depression and PTSD diagnosis. My rheum deserves my entire story so we can work on my entire quality of life. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @fireflyrn84: With a rare disease and any diagnosis for that matter, we feel so alone initially like we are the only ones going through this. Once the dust settles, you will find out that there are others and they are some of the best support that you can get. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A2: Cautionary tale re "talk to your doctor about" stuff: when I had full lymphedema flare during #rads for #cancer, rads-onc said I was "disturbed" /1 #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey b/c I asked her why she had told me rads might cause "swelling" vs saying it WOULD cause LYMPHEDEMA. I knew I was at risk for lymphedema, her use of word "swelling" seemed more about localized beam area swelling. /2 #patientchat |
| Lisa Davis Budzinski @lisadbudzinski T2 This is a must. When asked if I was depressed, my husband replied to the Dr, “How could she not be?! She just lost everything she’s worked so hard for” I was so shocked he actually had to speak up for me. #PatientChat |
| Alan Brewington @abrewi3010 A2 with dad dying this year that emotional stress brought the need for a medication change. The med hangover was affecting my caregiver duties negatively too. #patientchat |
| Patient Chat @patientchat T3: What are the signs of emotional distress? How do you know when it’s time to get additional help? #patientchat https://t.co/k3QP7JwdyK |
| Melissa VanHouten @melissarvh A2 Want the truth? No, because many in my #Gastroparesis community are not believed & bringing up any sort of emotional issues puts you at risk of being labeled & taken even less seriously than before re the real physical issues. #PatientChat |
| Patient Chat @patientchat RT @lisadbudzinski: T2 This is a must. When asked if I was depressed, my husband replied to the Dr, “How could she not be?! She just lost everything she’s worked so hard for” I was so shocked he actually had to speak up for me. #PatientChat |
| Patient Empowerment Network @power4patients @lisadbudzinski ❤️❤️❤️ #patientchat |
| Kimberly Amelia @fireflyrn84 @lisadbudzinski That's exactly what my husband says too! How would we not be depressed when our lives have been turned upside down? #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey I'm a writer, professional wordsmith. Exact words MATTER. Big difference btwn "might cause swelling" and "will likely cause lymphedema." Pressing her on this had her saying "you're obviously disturbed, I'm referring you to psych." /3 #patientchat |
| Alan Brewington @abrewi3010 A3 when tv watching takes the place of eating #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @fireflyrn84 Right?! Losing our professional career, our health, our homes, our health insurance....list goes on & on #PatientChat |
| Kevin Freiert @K_SalemOaks Heard something similar @S4PM Meeting this week. A vicious cycle leaves many stuck with carrying a load they can't or shouldn't have to. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey At which point I said, "nope, we're done - I'll show up for weekly phys exam during #rads, but we aren't talking any more." WORDS, and CLARITY, matter in these conversations. Always. /4 #patientchat |
 | Health Standards Org @HSO_world RT @lisadbudzinski: T2 This is a must. When asked if I was depressed, my husband replied to the Dr, “How could she not be?! She just lost everything she’s worked so hard for” I was so shocked he actually had to speak up for me. #PatientChat |
| Alan Brewington @abrewi3010 A3 when the tears start at work for no apparent reason #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @abrewi3010 It’s so very difficult to be a patient & caregiver all at the same time. I’m my husband’s caregiver, and to my precious Mom during her #leukemia years. It takes a huge toll on our inner & outer health✨ #PatientChat |
| Kimberly Amelia @fireflyrn84 T3: Avoiding friends and family, separating yourself and isolating, decreased or increased appetite. Sometimes our family recognizes it before we do. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @melissarvh This stigma has got to be torn down! #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T3: Impatience, Irritability, Anxiety. #patientchat |
| Kevin Freiert @K_SalemOaks RT @MightyCasey: At which point I said, "nope, we're done - I'll show up for weekly phys exam during #rads, but we aren't talking any more." WORDS, and CLARITY, matter in these conversations. Always. /4 #patientchat |
| Kimberly Amelia @fireflyrn84 @lisadbudzinski exactly! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @melissarvh: A2 Want the truth? No, because many in my #Gastroparesis community are not believed & bringing up any sort of emotional issues puts you at risk of being labeled & taken even less seriously than before re the real physical issues. #PatientChat |
 | 𝙀-𝙇𝙀𝙀 𝙇𝙊𝙑𝙀 💋 @E_LeeLove1 RT @melissarvh: Find as much info re your illness as possible from credible sources, join a support group, talk to trusted loved ones/friends, & accept help when needed. Most importantly, give it time. It may seem as if you will never find your footing, but you will. #PatientChat |
| Melissa VanHouten @melissarvh A3 Difficulty controlling thoughts/emotions, disturbed sleep patterns, fatigue, loss of interest in "normal" activities. For me, it generally presents as irritation over nothing & agitation/nervousness. #PatientChat |
| Melissa VanHouten @melissarvh RT @K_SalemOaks: Heard something similar @S4PM Meeting this week. A vicious cycle leaves many stuck with carrying a load they can't or shouldn't have to. #patientchat |
| Kevin Freiert @K_SalemOaks What she said! #patientchat |
 | Lynda Mitchell, MA, RHIA, CAE @LyndaGMitchell RT @melissarvh: Find as much info re your illness as possible from credible sources, join a support group, talk to trusted loved ones/friends, & accept help when needed. Most importantly, give it time. It may seem as if you will never find your footing, but you will. #PatientChat |
| Lisa Davis Budzinski @lisadbudzinski @TheRoctor_MD Precisely ✨ This was an unknown Dr brought in to assess me. I think my family Dr of 40 years knows me better 😉 #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @TheRoctor_MD EGGZACKLY. #patientchat |
| Alan Brewington @abrewi3010 @lisadbudzinski A huge toll is right! We are trying to sell dads house now, the toll never ends it seems. Good luck to you! #patientchat |
| Maya Northen Augelli @mayanorthen A3: For me, it's when it starts to interfere with various aspects of my life (beyond the usual), & I'm not feeling myself. Even w/ a mod disorder, I know what "me in a mood cycle" feels like vs me in distress. #patientchat |
| Melissa VanHouten @melissarvh RT @lisadbudzinski: @fireflyrn84 Right?! Losing our professional career, our health, our homes, our health insurance....list goes on & on #PatientChat |
| Patient Chat @patientchat T4A: How has the current healthcare system met (or not met) your needs for emotional health and support? #patientchat https://t.co/u9uJ7Qa85q |
 | Hello_U👋🏼 @MommysCancer RT @LReedsbooks: @patientchat T1: @patientchat T1: Find your support group. This is hard but you must recognize that you cannot get through this alone. Let people help -- they want to help. This allows you to focus on you. #patientchat |
| Hello_U👋🏼 @MommysCancer RT @K_SalemOaks: T1:I have seen over and over that people who find an outlet for their thoughts and emotions have been able to adapt and thrive. Writing, drawing, talking all seem to help. #SPM2018 #NORDSummit #GGSummit @savvy_coop #patientchat @SalemOaks |
 | IFFGD @IFFGD RT @melissarvh: Find as much info re your illness as possible from credible sources, join a support group, talk to trusted loved ones/friends, & accept help when needed. Most importantly, give it time. It may seem as if you will never find your footing, but you will. #PatientChat |
| Lisa Davis Budzinski @lisadbudzinski T3 This is very hard to do on your own. At this point, being overwhelmed & in shock are the 1st pointers. If negative feelings outweigh positive feelings in daily life, get additional help. #PatientChat |
 | Kristine Carandang @kmc5k @patientchat A1: Find at least 1 doctor one your healthcare team who you feel comfortable opening up to. Doesn’t have to be all the docs on the team, but at least 1. It’s made all the difference for me. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A3: here's where #intersectionality comes in handy. I've found more help for emotional impacts from my #bcsm + #epatient peers, NOT fm "behavioral health professionals" - IOW, peer-to-peer psych support. It's totally a thing. #patientchat #healthfuturism cc @PoetryforPower |
| Kimberly Amelia @fireflyrn84 T4A: The healthcare model doesn't look at the whole patient. We need to remember that #mentalhealth is just as important as physical. It all is one and if a portion is missing, then we aren't healthy. #patientchat |
| Kristine Carandang @kmc5k @patientchat T2: Didnt talk about mental health willingly at first, but I did once it stated affecting my relationships. Otherwise, my doctor would not have had a clue. Apparently I’m a good actress. #PatientChat |
| Lisa Davis Budzinski @lisadbudzinski @abrewi3010 I promise you, the toll will abate ✨ It’s hard to get through so accept and/or find help & assistance to help you through✨ #patientchat |
| Patient Chat @patientchat RT @kmc5k: @patientchat A1: @patientchat A1: Find at least 1 doctor one your healthcare team who you feel comfortable opening up to. Doesn’t have to be all the docs on the team, but at least 1. It’s made all the difference for me. #patientchat |
| Patient Chat @patientchat T4B: If you could improve the support you currently get through the healthcare system, what would it be? #patientchat https://t.co/LxHxcK5359 |
| Maya Northen Augelli @mayanorthen A4A: I probably have a dif answer than most, coming fr the mental health standpoint. For years, I tried to see dif dr's, MH pros, etc & tell them I knew something was going on w/my MH. It took me years to get my emotional/mental health taken seriously.. by MH pros! #patientchat |
| Melissa VanHouten @melissarvh Many in community who've tried counseling cite lack of understanding surrounding #chronicillness. Unless they find someone who specifically knows the issues/needs of this population, counseling is < helpful. Often, no direction given re how to find such a counselor. #PatientChat |
| Laurie Reed @LReedptadvocate @patientchat T4A: I believe the healthcare system (in most instances) has not recognized, and is not equipped to recognize, the emotional needs and health of patients. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T4B: T4B: If you could improve the support you currently get through the healthcare system, what would it be? #patientchat https://t.co/LxHxcK5359 |
| Alan Brewington @abrewi3010 A4 as a male #chronicpain pt I have to check my emotions so they fall within the male stereotype. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Sidebar: one signal that might get overlooked is the "impossible task" trigger. Explainer: https://t.co/9KdWWbKuga SUPERB identification of signal for depression flare. #patientchat |
| Patient Empowerment Network @power4patients @LReedsbooks @patientchat 100% agree #patientchat |
| Patient Empowerment Network @power4patients RT @LReedsbooks: @patientchat T4A: @patientchat T4A: I believe the healthcare system (in most instances) has not recognized, and is not equipped to recognize, the emotional needs and health of patients. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @melissarvh: Many in community who've tried counseling cite lack of understanding surrounding #chronicillness. Unless they find someone who specifically knows the issues/needs of this population, counseling is < helpful. Often, no direction given re how to find such a counselor. #PatientChat |
| Patient Empowerment Network @power4patients RT @fireflyrn84: T4A: T4A: The healthcare model doesn't look at the whole patient. We need to remember that #mentalhealth is just as important as physical. It all is one and if a portion is missing, then we aren't healthy. #patientchat |
| Melissa VanHouten @melissarvh RT @LReedsbooks: @patientchat T4A: @patientchat T4A: I believe the healthcare system (in most instances) has not recognized, and is not equipped to recognize, the emotional needs and health of patients. #patientchat |
| 𝙀-𝙇𝙀𝙀 𝙇𝙊𝙑𝙀 💋 @E_LeeLove1 RT @melissarvh: A2 Want the truth? No, because many in my #Gastroparesis community are not believed & bringing up any sort of emotional issues puts you at risk of being labeled & taken even less seriously than before re the real physical issues. #PatientChat |
| Alan Brewington @abrewi3010 @lisadbudzinski Luckily I have my brother who has stepped up big time! Without his help I would be lost. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski T4A The healthcare industry needs to recognize body, mind & spirit are the elements for a good quality of life #QOL. The mind reflects inner and outer health. The body is 1 machine with many parts therefore all components need to work in unison #PatientChat |
| Patient Chat @patientchat T5: What are some resources that are helpful in coping and dealing with your emotional distress? #patientchat https://t.co/UYHC6YQTxb |
| Kimberly Amelia @fireflyrn84 BINGO #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @abrewi3010 Oh thank goodness!! It’s just to much for 1 relative ✨ #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @melissarvh Why peer-to-peer emotional support is so necessary, and can be so helpful. But finding it isn't easy. Working on a project to change that. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: What are some resources that are helpful in coping and dealing with your emotional distress? #patientchat https://t.co/UYHC6YQTxb |
| Patient Chat @patientchat RT @lisadbudzinski: T4A The healthcare industry needs to recognize body, mind & spirit are the elements for a good quality of life #QOL. The mind reflects inner and outer health. The body is 1 machine with many parts therefore all components need to work in unison #PatientChat |
| Hello_U👋🏼 @MommysCancer RT @LReedsbooks: @patientchat T3: @patientchat T3: Impatience, Irritability, Anxiety. #patientchat |
| Maya Northen Augelli @mayanorthen This!! #patientchat |
| Hello_U👋🏼 @MommysCancer RT @fireflyrn84: T3: T3: Avoiding friends and family, separating yourself and isolating, decreased or increased appetite. Sometimes our family recognizes it before we do. #patientchat |
| Maya Northen Augelli @mayanorthen A5: Finding a support group, either formal/in person, through the patient community/online, is huge. Often, others struggling with the same/similar issues "get it" way more even than the health professionals. #patientchat |
| Alan Brewington @abrewi3010 A5 i love the Navy Seals mantra of “the only easy day was yesterday”. It helps me to remember to work the emotional issue, don’t fight it #patientchat |
| Hello_U👋🏼 @MommysCancer RT @lisadbudzinski: @fireflyrn84 Right?! Losing our professional career, our health, our homes, our health insurance....list goes on & on #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @lisadbudzinski Wild that "medical care" delivery system seems willing to believe one's mind/emotions are NOT CONTAINED WITHIN YOUR PHYSICAL BODY. Like your brain gets left in the waiting room in clinic 🙄🙄 #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @melissarvh 411 on that: https://t.co/5hgawH6TJT #patientchat |
| Melissa VanHouten @melissarvh A5 Online communities have been the most helpful. Always there, any time of day or night, & they truly understand - even w/o me having to explain. I also find advocacy helpful. If I am working for the cause/toward a goal, I feel better about the whole situation. #PatientChat |
| Lisa Davis Budzinski @lisadbudzinski T5 Emotional distress is part of getting a life altering diagnosis. There is an ICD10 code for this: https://t.co/AjABHAP76z #patientchat Share it with your Dr to start the conversation ✨ |
| Alan Brewington @abrewi3010 A5 wear a Buddhist bead bracelet as a reminder to use all my being in life, not just my anger which I rely on to much. I need to use me in emotional instances, not just one tool or aspect of me #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @MightyCasey This has been mind boggling to say the least! #PatientChat |
| Patient Chat @patientchat T6: A major diagnosis can place enormous pressure on relationships with loved ones, friends, family and co-workers. What can help? #patientchat https://t.co/CPrbkZwDsq |
| Melissa VanHouten @melissarvh Thank you so much! #PatientChat |
| Maya Northen Augelli @mayanorthen Advocacy helps me as well, for the same reason. Plus, I meet other amazing advocates, who I can often reach out to for support. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @lisadbudzinski It's almost laughable ... but then, it's not. #patientchat |
| Lynda Mitchell, MA, RHIA, CAE @LyndaGMitchell Hi I'm new to this chat but not new to peer support! This question resonates with me - what we need are physicians to refer people esp the newly diagnosed to support groups. And we need sustainable funding for online peer support communities. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @MightyCasey You so get me ✨ #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @melissarvh Don't thank me (I'm just a worker-bee and dissemination monkey) - it's all @PoetryforPower #healthfuturism #patientchat |
| Kevin Freiert @K_SalemOaks T6: Talk about these stressors. When I was diagnosed, I read @lancearmstrong and he said "The unknown of cancer is way harder on everyone around you than it is on you." It helped me care for my wife. #SPM2018 #NORDSummit #GGSummit @savvy_coop #patientchat @SalemOaks |
| Laurie Reed @LReedptadvocate @patientchat T5: Here's a short list: Friends Family On-line communities Support groups (diagnosis specific) Religious communities Writing Books Patient Advocates (professional Therapists Co-workers #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @LyndaGMitchell On that, @PoetryforPower is working a PCORI project in this lane. 411: https://t.co/5hgawH6TJT #healthfuturism #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @K_SalemOaks: T6: T6: Talk about these stressors. When I was diagnosed, I read @lancearmstrong and he said "The unknown of cancer is way harder on everyone around you than it is on you." It helped me care for my wife. #SPM2018 #NORDSummit #GGSummit @savvy_coop #patientchat @SalemOaks |
| Alan Brewington @abrewi3010 A5 Whole Foods vegan chocolate chip cookies #patientchat |
| Kevin Freiert @K_SalemOaks I wish twitter had a giggle button instead of like. #patientchat You rock Casey. |
| Melissa VanHouten @melissarvh A6 Tough. Accepting that things have changed & that everyone in your life is affected by the illness is a good start. Can't expect to carry on as if the illness has no impact. Best to talk it out & adjust expectations & plans. Life forever altered. Be ready for that. #PatientChat |
 | Frank R. @SarcoidosisofLI @patientchat @power4patients #patientchat I would recommend that you should be your own best advocate when it comes to going into an appointment with any doctor. Go in the appointment with a list of questions. If you are unsure make sure you have someone who can help you get organized. |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @lisadbudzinski Some b/g + context https://t.co/cPnK2CMDHR (I am, after all, the "comedy health analyst - stop screaming, laughing hurts less" 😜 #patientchat |
| Melissa VanHouten @melissarvh RT @K_SalemOaks: T6: T6: Talk about these stressors. When I was diagnosed, I read @lancearmstrong and he said "The unknown of cancer is way harder on everyone around you than it is on you." It helped me care for my wife. #SPM2018 #NORDSummit #GGSummit @savvy_coop #patientchat @SalemOaks |
| Maya Northen Augelli @mayanorthen A6: Talk about it. Of course some are more receptive than others but communication is key. Also, sharing as much information as we can with them about our condition. The more they know, the more they can appropriately interact, offer help, etc. #patientchat |
| Patient Chat @patientchat Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat |
| Lisa Davis Budzinski @lisadbudzinski T6 Knowledge. Learn your DX/condition inside & out. This helps you directly. Then you are able to explain it to others. Once everyone is on the same page, plans can be made for moving forward with everyone involved for the best outcome on every aspect✨ #PatientChat |
| Melissa VanHouten @melissarvh @K_SalemOaks @lancearmstrong @savvy_coop @SalemOaks So true! Watching how this illness impacts my family, esp. my young daughter, is far more difficult than feeling its effects on me. It changes things for EVERYONE, not just the patient. #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @melissarvh: A6 Tough. Accepting that things have changed & that everyone in your life is affected by the illness is a good start. Can't expect to carry on as if the illness has no impact. Best to talk it out & adjust expectations & plans. Life forever altered. Be ready for that. #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @lisadbudzinski: T6 Knowledge. Learn your DX/condition inside & out. This helps you directly. Then you are able to explain it to others. Once everyone is on the same page, plans can be made for moving forward with everyone involved for the best outcome on every aspect✨ #PatientChat |
| Maya Northen Augelli @mayanorthen A6: Blogging about my illness has helped. Sometimes when I can't talk about things, I can write about them. Then family/loved ones can read, digest, and if they want to ask questions/reach out, do so in their own time. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @K_SalemOaks @lancearmstrong @savvy_coop @SalemOaks 👏👏👏 so important to find the words that resonate ✨ #PatientChat |
| Kevin Freiert @K_SalemOaks CT: This was a great set of questions! I sat here in keyboard silence because there are not easy answers. My takeaway is it is important to RECOGNIZE that emotions are a real part of life. #patientchat |
| Melissa VanHouten @melissarvh RT @mayanorthen: A6: A6: Blogging about my illness has helped. Sometimes when I can't talk about things, I can write about them. Then family/loved ones can read, digest, and if they want to ask questions/reach out, do so in their own time. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski RT @LReedsbooks: @patientchat T5: @patientchat T5: Here's a short list: Friends Family On-line communities Support groups (diagnosis specific) Religious communities Writing Books Patient Advocates (professional Therapists Co-workers #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @K_SalemOaks: CT: CT: This was a great set of questions! I sat here in keyboard silence because there are not easy answers. My takeaway is it is important to RECOGNIZE that emotions are a real part of life. #patientchat |
| Patient Empowerment Network @power4patients RT @SarcoidosisofLI: @patientchat @power4patients #patientchat I would recommend that you should be your own best advocate when it comes to going into an appointment with any doctor. Go in the appointment with a list of questions. If you are unsure make sure you have someone who can help you get organized. |
| Lisa Davis Budzinski @lisadbudzinski RT @melissarvh: A6 Tough. Accepting that things have changed & that everyone in your life is affected by the illness is a good start. Can't expect to carry on as if the illness has no impact. Best to talk it out & adjust expectations & plans. Life forever altered. Be ready for that. #PatientChat |
| Patient Empowerment Network @power4patients RT @LReedsbooks: @patientchat T5: @patientchat T5: Here's a short list: Friends Family On-line communities Support groups (diagnosis specific) Religious communities Writing Books Patient Advocates (professional Therapists Co-workers #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. I will tweet out the transcript about 15 minutes past the hour. |
| Patient Empowerment Network @power4patients RT @patientchat: T6: T6: A major diagnosis can place enormous pressure on relationships with loved ones, friends, family and co-workers. What can help? #patientchat https://t.co/CPrbkZwDsq |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime. |
| Frank R. @SarcoidosisofLI @patientchat I spoke to my doctor about mental health. I knew the impact that the illness had on many patients I talked to. #patientchat |
| Patient Chat @patientchat The next Empowered #patientchat will be Friday, November 2nd at 1pm ET | 10am PT Hope to see you there! https://t.co/A6q1GyH90s |
| Lisa Davis Budzinski @lisadbudzinski CT Please spread the word: Mental Health support while dealing with a diagnosis is imperative for everyone involved. #PatientChat |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Patient Chat @patientchat RT @lisadbudzinski: CT Please spread the word: CT Please spread the word: Mental Health support while dealing with a diagnosis is imperative for everyone involved. #PatientChat |
| Patient Chat @patientchat So glad I got to spend some time with you all thinking about healthcare and how to make it better. Have a great weekend everyone! #patientchat |
| Frank R. @SarcoidosisofLI @patientchat I had a total breakdown about 3 years ago, when told there was no more medication that would help me. The pain was so bad that I contemplated suicide. I am lucky I was strong enough to put myself into a 72 hour watch so I didn't try it. #patientchat |
| Lisa Davis Budzinski @lisadbudzinski Everyone enjoy your weekend no matter where your are✨ #patientchat |
| Lisa Davis Budzinski @lisadbudzinski @patientchat Thank you for bringing up such an important topic! #PatientChat |
| Patient Chat @patientchat @zorapanina @LReedsbooks @power4patients .@lisadbudzinski @abrewi3010 @bbhomebody any thoughts? #patientchat |
 | David Harlow @healthblawg Adding: #patientchat ~ If you use FB groups for patient support please take the linked anonymous survey. If you know others who use FB groups for patient support please share. Thanks. |
| Frank R. @SarcoidosisofLI @patientchat T4. The healthcare system is definitely not equipped to deal with the emotional consequences of being chronically ill or disabled. They need to start training counselors to better understand the different challenges of being ill. #patientchat |
| Frank R. @SarcoidosisofLI @patientchat A6. For me being honest helped us get through the hard times. Also just because you are the one sick doesn't mean you can't compromise also. You have to remember that your s/o has feelings too. Also talking and not getting defensive. #patientchat |
| Alan Brewington @abrewi3010 @patientchat @zorapanina @LReedsbooks @power4patients @lisadbudzinski @bbhomebody I would suggest the #ChronicPain or #Painsomnia tags. I would also suggest calling local rheumatologists or pain management docs to see if they have local groups. #patientchat |
#patientchat content from Twitter.