#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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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 Deshpande @ParijatDesh
RT @ParijatDesh: Who you trust during #infertility , your #highriskpregnancy or when you have a #baby in the #NICU can make or break your…
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 Hartmann @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 Hartmann @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 Hartmann @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 Hartmann @fireflyrn84
@H_SalemOaks good to see you! #patientchat
Our Blogging Life @OurBloggingLife
RT @fireflyrn84: Hey all, it's been a loooonnnggg time since I've been on a #patientchat with everyone! Kim here from Wisconsin. #raredisea
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 Casey Quinlan @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/jR…
Kimberly Hartmann @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 @power4patients
RT @patientchat: T1: Many patients feel overwhelmed after a major diagnosis. What can help? What can you do to take control? #patientchat h…
Patient Empowerment @power4patients
RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage with ot…
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
ReedsBooks @LReedsbooks
@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 Casey Quinlan @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 th…
Mighty Casey Quinlan @MightyCasey
RT @patientchat: T1: Many patients feel overwhelmed after a major diagnosis. What can help? What can you do to take control? #patientchat h…
Kimberly Hartmann @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 @power4patients
T1: Here's a blog post we wrote for patients facing a #cancer diagnosis: https://t.co/qXZCJbJKBQ #patientchat
Patient Empowerment @power4patients
RT @LReedsbooks: @patientchat T1: Find your support group. This is hard but you must recognize that you cannot get through this alone. Let…
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: 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 Hartmann @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 @power4patients
@fireflyrn84 Excellent advice. As you say, hard to do sometimes but helps a lot #patientchat
Mighty Casey Quinlan @MightyCasey
RT @power4patients: 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 i…
Kimberly Hartmann @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: 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/frien…
Kimberly Hartmann @fireflyrn84
@lisadbudzinski @Cpnervecenter @bbhomebody Lisa!!! #patientchat
Patient Chat @patientchat
RT @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 #pa
Kimberly Hartmann @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 @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 Casey Quinlan @MightyCasey
RT @patientchat: T2: Have you spoken with your doctor about the emotional impacts of your health condition? Why or why not? #patientchat ht…
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 Hartmann @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…
Mighty Casey Quinlan @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 Casey Quinlan @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 e…
Patient Empowerment @power4patients
@lisadbudzinski ❤️❤️❤️ #patientchat
Kimberly Hartmann @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 Casey Quinlan @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 Casey Quinlan @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 e…
Alan Brewington @abrewi3010
A3 when the tears start at work for no apparent reason #patientchat
Carol McCullough @Imonlyslightly
RT @melissarvh: Find as much info re your illness as possible from credible sources, join a support group, talk to trusted loved ones/frien…
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 Hartmann @fireflyrn84
T3: Avoiding friends and family, separating yourself and isolating, decreased or increased appetite. Sometimes our family recognizes it before we do. #patientchat
Carol McCullough @Imonlyslightly
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 e…
Lisa Davis Budzinski @lisadbudzinski
@melissarvh This stigma has got to be torn down! #patientchat
ReedsBooks @LReedsbooks
@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.…
Kimberly Hartmann @fireflyrn84
@lisadbudzinski exactly! #patientchat
Mighty Casey Quinlan @MightyCasey
RT @melissarvh: A2 Want the truth? No, because many in my #Gastroparesis community are not believed & bringing up any sort of emotional iss…
E-Lee Love ❤️💋❤️💋 @Elsabox123
RT @melissarvh: Find as much info re your illness as possible from credible sources, join a support group, talk to trusted loved ones/frien…
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 sho…
Being Dense @BreastDense
I have learned so much about #BreastCancer from Twitter #patientchat The knowledge base & support sustains many of us & benefits all. @double_whammied @WendyIngman @WaterfordMafia @ResearchatNUIG @cancertrials_ie @RCSI_Irl @ecancer_patient
Carol McCullough @Imonlyslightly
RT @melissarvh: A2 Want the truth? No, because many in my #Gastroparesis community are not believed & bringing up any sort of emotional iss…
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/frien…
Kevin Freiert @K_SalemOaks
What she said! #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 Casey Quinlan @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
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
Melissa VanHouten @melissarvh
RT @lisadbudzinski: @fireflyrn84 Right?! Losing our professional career, our health, our homes, our health insurance....list goes on & on #…
Mommy's Cancer @MommysCancer
RT @LReedsbooks: @patientchat T1: Find your support group. This is hard but you must recognize that you cannot get through this alone. Let…
Mommy's Cancer @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 th…
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/frien…
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 Casey Quinlan @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 Hartmann @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: Find at least 1 doctor one your healthcare team who you feel comfortable opening up to. Doesn’t have to be all…
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
ReedsBooks @LReedsbooks
@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 @power4patients
RT @patientchat: T4B: If you could improve the support you currently get through the healthcare system, what would it be? #patientchat http…
Alan Brewington @abrewi3010
A4 as a male #chronicpain pt I have to check my emotions so they fall within the male stereotype. #patientchat
Mighty Casey Quinlan @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 @power4patients
@LReedsbooks @patientchat 100% agree #patientchat
Patient Empowerment @power4patients
RT @LReedsbooks: @patientchat T4A: I believe the healthcare system (in most instances) has not recognized, and is not equipped to recognize…
Mighty Casey Quinlan @MightyCasey
RT @melissarvh: Many in community who've tried counseling cite lack of understanding surrounding #chronicillness. Unless they find someone…
Patient Empowerment @power4patients
RT @fireflyrn84: T4A: The healthcare model doesn't look at the whole patient. We need to remember that #mentalhealth is just as important a…
Melissa VanHouten @melissarvh
RT @LReedsbooks: @patientchat T4A: I believe the healthcare system (in most instances) has not recognized, and is not equipped to recognize…
E-Lee Love ❤️💋❤️💋 @Elsabox123
RT @melissarvh: A2 Want the truth? No, because many in my #Gastroparesis community are not believed & bringing up any sort of emotional iss…
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 Hartmann @fireflyrn84
BINGO #patientchat
Lisa Davis Budzinski @lisadbudzinski
@abrewi3010 Oh thank goodness!! It’s just to much for 1 relative ✨ #PatientChat
Mighty Casey Quinlan @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 @power4patients
RT @patientchat: T5: What are some resources that are helpful in coping and dealing with your emotional distress? #patientchat https://t.co…
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. Th…
Mommy's Cancer @MommysCancer
RT @LReedsbooks: @patientchat T3: Impatience, Irritability, Anxiety. #patientchat
Maya Northen Augelli @mayanorthen
This!! #patientchat
Mommy's Cancer @MommysCancer
RT @fireflyrn84: T3: Avoiding friends and family, separating yourself and isolating, decreased or increased appetite. Sometimes our family…
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
Mommy's Cancer @MommysCancer
RT @lisadbudzinski: @fireflyrn84 Right?! Losing our professional career, our health, our homes, our health insurance....list goes on & on #…
Mighty Casey Quinlan @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 Casey Quinlan @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 Casey Quinlan @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 Casey Quinlan @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
ReedsBooks @LReedsbooks
@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 Casey Quinlan @MightyCasey
@LyndaGMitchell On that, @PoetryforPower is working a PCORI project in this lane. 411: https://t.co/5hgawH6TJT #healthfuturism #patientchat
Mighty Casey Quinlan @MightyCasey
RT @K_SalemOaks: T6: Talk about these stressors. When I was diagnosed, I read @lancearmstrong and he said "The unknown of cancer is way h…
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 Casey Quinlan @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: Talk about these stressors. When I was diagnosed, I read @lancearmstrong and he said "The unknown of cancer is way h…
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 Casey Quinlan @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…
Mighty Casey Quinlan @MightyCasey
RT @lisadbudzinski: T6 Knowledge. Learn your DX/condition inside & out. This helps you directly. Then you are able to explain it to others.…
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: Blogging about my illness has helped. Sometimes when I can't talk about things, I can write about them. Then family/lo…
Lisa Davis Budzinski @lisadbudzinski
RT @LReedsbooks: @patientchat T5: Here's a short list: Friends Family On-line communities Support groups (diagnosis specific) Religious com…
Mighty Casey Quinlan @MightyCasey
RT @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…
Patient Empowerment @power4patients
RT @SarcoidosisofLI: @patientchat @power4patients #patientchat I would recommend that you should be your own best advocate when it comes to…
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…
Patient Empowerment @power4patients
RT @LReedsbooks: @patientchat T5: Here's a short list: Friends Family On-line communities Support groups (diagnosis specific) Religious com…
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 @power4patients
RT @patientchat: T6: A major diagnosis can place enormous pressure on relationships with loved ones, friends, family and co-workers. What c…
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: Mental Health support while dealing with a diagnosis is imperative for everyone involved. #P
Joan Hassin @hassin_joan
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 e…
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
Carole Sian @scrufton73
@btrfly12 @SuperFlyEDSguy @HellenSlicy @esteckler2 @Patient2Premed @H_SalemOaks @PDadvocacy @K_Sheridan1 Just got back from @eyeforpharma #efppatient #efplondon #Impatientconf so am quite weary from the train journey. Will read later to join in the #patientchat And add my comments 😘
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.