#DysSupportChat Transcript
Healthcare social media transcript of the #DysSupportChat hashtag.
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See #DysSupportChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Dysautonomia Support Network @DysSupport Join us Tuesday, July 24 at 2 pm PDT/5 pm EDT for another Twitter Chat. Coming fresh off of our Disability webinar, we wanted to keep with the theme and chat some more about it! We'll be joined by @JonMarf58 #DysSupportChat #Dysautonomia #EDS #Chiari #MCAD #GP #chronicillness https://t.co/qgGQ6mRD7u |
 | Inspire @InspireIsHealth RT @DysSupport: Join us Tuesday, July 24 at 2 pm PDT/5 pm EDT for another Twitter Chat. Coming fresh off of our Disability webinar, we wanted to keep with the theme and chat some more about it! We'll be joined by @JonMarf58 #DysSupportChat #Dysautonomia #EDS #Chiari #MCAD #GP #chronicillness https://t.co/qgGQ6mRD7u |
 | Oh TWIST! @H2OhTwist RT @DysSupport: Join us Tuesday, July 24 at 2 pm PDT/5 pm EDT for another Twitter Chat. Coming fresh off of our Disability webinar, we wanted to keep with the theme and chat some more about it! We'll be joined by @JonMarf58 #DysSupportChat #Dysautonomia #EDS #Chiari #MCAD #GP #chronicillness https://t.co/qgGQ6mRD7u |
| Dysautonomia Support Network @DysSupport @melissarvh Thank you! Join us for our Twitter chat, #DysSupportChat on Tuesday 7/24 at 5 pm ET. We’ll be discussing #disability again! |
| Dysautonomia Support Network @DysSupport Here are the topics for our #DysSupportChat on Tuesday 7/24 at 5 pm EDT. Click on the link and you will be taken there. Our focus will be applying for #Disability. Let's carry all of the momentum from our webinar into the chat! #dysautonomia #POTS #EDS #GP https://t.co/MwUA5rgoNK https://t.co/i6hDx8bmUS |
 | Kimberly Amelia @fireflyrn84 This is one that you don't want to miss! Applying for #disability is a hot topic right now. Please share! #dysautonomia #EDS #POTS #GP #Chiari #MCAD #hcldr #LadiesofRare @patientchat @wegohealth @savvy_coop @Clara_Health @bbhomebody @RieOfLetters @lisadbudzinski #dyssupportchat |
 | AutonomicRN© @AutonomicRN Please share so we can reach as many people as possible. We will be joined by National Disability Advocate @JonMarf58 #dysautonomia #POTS #EDS #Chiari #GP #chronicillness #raredisease #DysSupportChat #hcldr #WTFix @teaminspire @brkthrough_crew @WheezyNurse @melissarvh @angelee828 |
 | Melissa VanHouten @melissarvh RT @AutonomicRN: Please share so we can reach as many people as possible. We will be joined by National Disability Advocate @JonMarf58 #dysautonomia #POTS #EDS #Chiari #GP #chronicillness #raredisease #DysSupportChat #hcldr #WTFix @teaminspire @brkthrough_crew @WheezyNurse @melissarvh @angelee828 |
 | Angela Cohen @angelee828 RT @AutonomicRN: Please share so we can reach as many people as possible. We will be joined by National Disability Advocate @JonMarf58 #dysautonomia #POTS #EDS #Chiari #GP #chronicillness #raredisease #DysSupportChat #hcldr #WTFix @teaminspire @brkthrough_crew @WheezyNurse @melissarvh @angelee828 |
 | Lisa Davis Budzinski @lisadbudzinski RT @fireflyrn84: This is one that you don't want to miss! Applying for #disability is a hot topic right now. Please share! #dysautonomia #EDS #POTS #GP #Chiari #MCAD #hcldr #LadiesofRare @patientchat @wegohealth @savvy_coop @Clara_Health @bbhomebody @RieOfLetters @lisadbudzinski #dyssupportchat |
 | Christina Lizaso @btrfly12 RT @DysSupport: Here are the topics for our #DysSupportChat on Tuesday 7/24 at 5 pm EDT. Click on the link and you will be taken there. Our focus will be applying for #Disability. Let's carry all of the momentum from our webinar into the chat! #dysautonomia #POTS #EDS #GP https://t.co/MwUA5rgoNK https://t.co/i6hDx8bmUS |
| Inspire @InspireIsHealth RT @DysSupport: Here are the topics for our #DysSupportChat on Tuesday 7/24 at 5 pm EDT. Click on the link and you will be taken there. Our focus will be applying for #Disability. Let's carry all of the momentum from our webinar into the chat! #dysautonomia #POTS #EDS #GP https://t.co/MwUA5rgoNK https://t.co/i6hDx8bmUS |
 | Rie Lopez, MPH (she/her) @RieOfLetters RT @fireflyrn84: This is one that you don't want to miss! Applying for #disability is a hot topic right now. Please share! #dysautonomia #EDS #POTS #GP #Chiari #MCAD #hcldr #LadiesofRare @patientchat @wegohealth @savvy_coop @Clara_Health @bbhomebody @RieOfLetters @lisadbudzinski #dyssupportchat |
| Oh TWIST! @H2OhTwist RT @fireflyrn84: This is one that you don't want to miss! Applying for #disability is a hot topic right now. Please share! #dysautonomia #EDS #POTS #GP #Chiari #MCAD #hcldr #LadiesofRare @patientchat @wegohealth @savvy_coop @Clara_Health @bbhomebody @RieOfLetters @lisadbudzinski #dyssupportchat |
 | clover @poptartmomma50 RT @DysSupport: Here are the topics for our #DysSupportChat on Tuesday 7/24 at 5 pm EDT. Click on the link and you will be taken there. Our focus will be applying for #Disability. Let's carry all of the momentum from our webinar into the chat! #dysautonomia #POTS #EDS #GP https://t.co/MwUA5rgoNK https://t.co/i6hDx8bmUS |
 | Its ME Matina @justask RT @fireflyrn84: This is one that you don't want to miss! Applying for #disability is a hot topic right now. Please share! #dysautonomia #EDS #POTS #GP #Chiari #MCAD #hcldr #LadiesofRare @patientchat @wegohealth @savvy_coop @Clara_Health @bbhomebody @RieOfLetters @lisadbudzinski #dyssupportchat |
 | angieRirvin @angieRirvin RT @DysSupport: Here are the topics for our #DysSupportChat on Tuesday 7/24 at 5 pm EDT. Click on the link and you will be taken there. Our focus will be applying for #Disability. Let's carry all of the momentum from our webinar into the chat! #dysautonomia #POTS #EDS #GP https://t.co/MwUA5rgoNK https://t.co/i6hDx8bmUS |
 | Patient Chat @patientchat RT @fireflyrn84: This is one that you don't want to miss! Applying for #disability is a hot topic right now. Please share! #dysautonomia #EDS #POTS #GP #Chiari #MCAD #hcldr #LadiesofRare @patientchat @wegohealth @savvy_coop @Clara_Health @bbhomebody @RieOfLetters @lisadbudzinski #dyssupportchat |
 | ribbonrx @ribbonrx RT @AutonomicRN: Please share so we can reach as many people as possible. We will be joined by National Disability Advocate @JonMarf58 #dysautonomia #POTS #EDS #Chiari #GP #chronicillness #raredisease #DysSupportChat #hcldr #WTFix @teaminspire @brkthrough_crew @WheezyNurse @melissarvh @angelee828 |
 | DysautonomiaDreamer© @DysDreamer RT @DysSupport: Here are the topics for our #DysSupportChat on Tuesday 7/24 at 5 pm EDT. Click on the link and you will be taken there. Our focus will be applying for #Disability. Let's carry all of the momentum from our webinar into the chat! #dysautonomia #POTS #EDS #GP https://t.co/MwUA5rgoNK https://t.co/i6hDx8bmUS |
| Christina Lizaso @btrfly12 RT @fireflyrn84: This is one that you don't want to miss! Applying for #disability is a hot topic right now. Please share! #dysautonomia #EDS #POTS #GP #Chiari #MCAD #hcldr #LadiesofRare @patientchat @wegohealth @savvy_coop @Clara_Health @bbhomebody @RieOfLetters @lisadbudzinski #dyssupportchat |
 | Sarah Tompkins 🦽❤️🦓 @SarestBearest RT @AutonomicRN: Please share so we can reach as many people as possible. We will be joined by National Disability Advocate @JonMarf58 #dysautonomia #POTS #EDS #Chiari #GP #chronicillness #raredisease #DysSupportChat #hcldr #WTFix @teaminspire @brkthrough_crew @WheezyNurse @melissarvh @angelee828 |
| AutonomicRN© @AutonomicRN Don't forget we're talking #disability tomorrow! Join us for #DysSupportChat #dysautonomia #POTS #GP #EDS #chiari @CSFinfo @TheEDSociety @teaminspire @bbhomebody @lisadbudzinski @RieOfLetters https://t.co/knMmUrqgGD |
| Lisa Davis Budzinski @lisadbudzinski RT @DysSupport: Here are the topics for our #DysSupportChat on Tuesday 7/24 at 5 pm EDT. Click on the link and you will be taken there. Our focus will be applying for #Disability. Let's carry all of the momentum from our webinar into the chat! #dysautonomia #POTS #EDS #GP https://t.co/MwUA5rgoNK https://t.co/i6hDx8bmUS |
| Angela Cohen @angelee828 @AutonomicRN @CSFinfo @TheEDSociety @teaminspire @bbhomebody @lisadbudzinski @RieOfLetters I’m unfortunately going to miss it, but I’m looking forward to catching up/participating afterwards! #DysSupportChat |
 | Bobby Jones Chiari & Syringomyelia Foundation @bobbyjonescsf RT @AutonomicRN: Don't forget we're talking #disability tomorrow! Join us for #DysSupportChat #dysautonomia #POTS #GP #EDS #chiari @CSFinfo @TheEDSociety @teaminspire @bbhomebody @lisadbudzinski @RieOfLetters https://t.co/knMmUrqgGD |
| Dysautonomia Support Network @DysSupport 4 hours until we start talking #disability. Mark it down and come join us. #DysSupportChat #dysautonomia #EDS #Chiari #MCAD #GP #chronicillness https://t.co/qJKWgb9uCi |
 | KelsRACHA 켈시 @kelseyhardstone RT @DysSupport: 4 hours until we start talking #disability. Mark it down and come join us. #DysSupportChat #dysautonomia #EDS #Chiari #MCAD #GP #chronicillness https://t.co/qJKWgb9uCi |
| Dysautonomia Support Network @DysSupport 2 hours left before our twitter chat! #DysSupportChat #dysautonomia #EDS #Chiari #MCAD #GP #chronicillness #disability |
| DysautonomiaDreamer© @DysDreamer RT @DysSupport: 4 hours until we start talking #disability. Mark it down and come join us. #DysSupportChat #dysautonomia #EDS #Chiari #MCAD #GP #chronicillness https://t.co/qJKWgb9uCi |
| Kimberly Amelia @fireflyrn84 RT @DysSupport: 2 hours left before our twitter chat! #DysSupportChat #dysautonomia #EDS #Chiari #MCAD #GP #chronicillness #disability |
| Dysautonomia Support Network @DysSupport Only 1 hour left! #DysSupportChat |
| Dysautonomia Support Network @DysSupport Just 5 more minutes until we kick things off with our #disability Twitter Chat. We hope that you'll join us! We're going to be joined by special guest, @MarfanAware #DysSupportChat @CSFinfo @TheEDSociety @teaminspire https://t.co/CyDU9h7Cq6 |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @DysSupport: Here are the topics for our #DysSupportChat on Tuesday 7/24 at 5 pm EDT. Click on the link and you will be taken there. Our focus will be applying for #Disability. Let's carry all of the momentum from our webinar into the chat! #dysautonomia #POTS #EDS #GP https://t.co/MwUA5rgoNK https://t.co/i6hDx8bmUS |
| Inspire @InspireIsHealth RT @DysSupport: Just 5 more minutes until we kick things off with our #disability Twitter Chat. We hope that you'll join us! We're going to be joined by special guest, @MarfanAware #DysSupportChat @CSFinfo @TheEDSociety @teaminspire https://t.co/CyDU9h7Cq6 |
| Dysautonomia Support Network @DysSupport If you have any additional questions regarding the disability process or want to contact Jonathan, feel free to DM @DSNNurseAdvoc #DysSupportChat |
| AutonomicRN© @AutonomicRN This is a great resource for everyone and the disability application process! #DysSupportChat https://t.co/ON0arMV4kW |
| Dysautonomia Support Network @DysSupport "It's 5 o'clock somewhere." Welcome to Dysautonomia Support Network’s July Twitter Chat. Thanks for joining today. Let’s take 5 minutes to say hi, introduce yourself & tell us where you’re tweeting from. #DSN #DysSupportChat |
| Rie Lopez, MPH (she/her) @RieOfLetters For the next hour-ish, I will be tweeting interesting things from #DysSupportChat, where we'll be discussing the process of applying for #disability. Feel free stop by and join in! #chronicillness |
| Dysautonomia Support Network @DysSupport Today we are joined by guest, @MarfanAware, Jonathan Rodis, MBA. He is a National #Disability Advocate and also a member of the #DSN Board of Directors among many other affiliations. There is a wealth of knowledge here and we are excited to have him. #DysSupportChat |
| AutonomicRN© @AutonomicRN @RieOfLetters Yay! You're here! #DysSupportChat |
| AutonomicRN© @AutonomicRN I'm Kim, tweeting from Wisconsin. #healthcare experience and #chronicillness blogger, #raredisease and #patientjourney advocate. #DysSupportChat |
| Rie Lopez, MPH (she/her) @RieOfLetters Hi! I'm Rie, joining y'all from MA. I'm mostly here to learn today, so I am going to be a bit quiet. #DysSupportChat |
| Jonathan Rodis @MarfanAware #DysSupportChat this is Jon (Jonathan) Rodis and I am a national disability and medical advocate and I am on the DSN BOD and I co-run the EDS and CTD NE/MA Support Group. Glad to be here! | |
| Dysautonomia Support Network @DysSupport I'm Kim & will be moderating today. Before we get started, let’s get a few housekeeping items out of the way. To organize the chat, questions will be labeled Q1, Q2, etc and answers should be labeled A1, A2, etc. Also remember to include #DysSupportChat on each tweet. |
| Dysautonomia Support Network @DysSupport @RieOfLetters It's a huge topic to learn about without a doubt! #DysSupportChat |
| Dysautonomia Support Network @DysSupport Just an FYI, some of the topics have been changed from what was posted previously. We also have a bonus question this time around. A lot to cover and only an hour to do it in! Yikes, it's just about time to hit the first topic! #DysSupportChat |
| AutonomicRN© @AutonomicRN @bbhomebody Hey Becky!! #DysSupportChat |
| Dysautonomia Support Network @DysSupport @bbhomebody Glad you could join us today :) #DysSupportChat |
| Dysautonomia Support Network @DysSupport Q1: What have you heard about #SSI and/or #SSDI that has been confusing? #DysSupportChat https://t.co/Giz9W6r5Ug |
| AutonomicRN© @AutonomicRN RT @DysSupport: Q1: Q1: What have you heard about #SSI and/or #SSDI that has been confusing? #DysSupportChat https://t.co/Giz9W6r5Ug |
| Jonathan Rodis @MarfanAware A1: Knowing what each is-SSI being for children or adults who have not put ample $'s into the SS system and SSDi which is based on what you have put in called work credits. #DysSupportChat | |
| AutonomicRN© @AutonomicRN A1: Not so much confusion, but just how complex the process is. Having gone through it and still am going through it, I can attest to how much common sense is lost in the system! #DysSupportChat |
| Dysautonomia Support Network @DysSupport This is something that we hear about a lot. A very complex process and a long process. #DysSupportChat https://t.co/nBGO7916nw |
 | Kelly Lewandowski @KellyLewandows2 #dyssupportchat hello everyone! Excellent topic! |
| Inspire @InspireIsHealth RT @RieOfLetters: For the next hour-ish, I will be tweeting interesting things from #DysSupportChat, where we'll be discussing the process of applying for #disability. Feel free stop by and join in! #chronicillness |
| Inspire @InspireIsHealth Hello to #DysSupportChat, John Novack from Inspire checking in. |
| Dysautonomia Support Network @DysSupport Great point! Something that not everyone is necessarily aware of. #DysSupportChat https://t.co/yVGXPFK1nl |
| AutonomicRN© @AutonomicRN @teaminspire Hey John! Glad you're here! #DysSupportChat |
| Lisa Davis Budzinski @lisadbudzinski Hi everyone! I’m Lisa joining in from Florida. #RareDisease patient & Advocate. Co-Founder of @Cpnervecenter with fantabulous partner @bbhomebody #DysSupportChat |
| Dysautonomia Support Network @DysSupport #DysSupportChat https://t.co/fsmX0fDNXN |
| Inspire @InspireIsHealth RT @MarfanAware: A1: A1: Knowing what each is-SSI being for children or adults who have not put ample $'s into the SS system and SSDi which is based on what you have put in called work credits. #DysSupportChat |
| Dysautonomia Support Network @DysSupport @teaminspire Hi John! #DysSupportChat |
| AutonomicRN© @AutonomicRN @lisadbudzinski @Cpnervecenter @bbhomebody Hey girlie! Glad to see you! #DysSupportChat |
| Lisa Davis Budzinski @lisadbudzinski Come join in. Talking #socialsecurity #SSDI #DysSupportChat https://t.co/KfmzleCifG |
| Lisa Davis Budzinski @lisadbudzinski @AutonomicRN @Cpnervecenter @bbhomebody Hi sweetie! 😘 #DysSupportChat |
| Dysautonomia Support Network @DysSupport @lisadbudzinski @Cpnervecenter @bbhomebody Hi Lisa! #DysSupportChat |
| Lisa Davis Budzinski @lisadbudzinski @DysSupport @Cpnervecenter @bbhomebody Hello 👋 #DysSupportChat |
| Dysautonomia Support Network @DysSupport @KellyLewandows2 Hey Kelly! Glad you're here! #DysSupportChat |
| Dysautonomia Support Network @DysSupport Q2: If you've gone through the #disability application process, what was the hardest part of it? #DysSupportChat https://t.co/SIVTijIMkY |
| AutonomicRN© @AutonomicRN @KellyLewandows2 Hey Kelly! #DysSupportChat |
| Dysautonomia Support Network @DysSupport @MarfanAware Don't forget to put the # in front of #DysSupportChat ;) |
| Kelly Lewandowski @KellyLewandows2 Hi! #dyssupportchat |
| Jonathan Rodis @MarfanAware A2: One the most important things is knowing what to write and what not to write. You should answer their questions completely but utilize any chance you have to refer to a physical limitation(s) you have. #DysSupportChat | |
| AutonomicRN© @AutonomicRN A2: The waiting is the hardest part. You constantly play "hurry up and wait." Then file more paperwork and wait some more. It's really frustrating. #DysSupportChat |
| Kelly Lewandowski @KellyLewandows2 The one question I hear is, can you work some and get disability? #dyssupportchat |
| Jonathan Rodis @MarfanAware @DysSupport #DysSupportChat..I'm a newbie. : ) | |
| AutonomicRN© @AutonomicRN So glad that you're here with us! Thanks! #DysSupportChat https://t.co/RzbQB5ay78 |
| Dysautonomia Support Network @DysSupport @MarfanAware I know, I'll give you a freebie :) #DysSupportChat |
 | nobism @nobismhealth RT @AutonomicRN: I'm Kim, tweeting from Wisconsin. #healthcare experience and #chronicillness blogger, #raredisease and #patientjourney advocate. #DysSupportChat |
| Lisa Davis Budzinski @lisadbudzinski A2 The time it takes. Very time consuming which is very difficult for #chronicillness patients. #DysSupportChat https://t.co/WHSG1xJaOL |
| Dysautonomia Support Network @DysSupport @lisadbudzinski The time factor is huge, especially when income is limited. #DysSupportChat |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @AutonomicRN: So glad that you're here with us! Thanks! #DysSupportChat https://t.co/RzbQB5ay78 |
| Jonathan Rodis @MarfanAware @KellyLewandows2 #DysSupportChat per the SSA system NO but if you have to work to pay bills and survive there are exceptions that are made and upheld. | |
| Dysautonomia Support Network @DysSupport @MarfanAware, correct me if I'm wrong, but I believe as long as you aren't making more than $1000 per month, you can still get #SSDI #DysSupportChat https://t.co/7IcNKcoIeQ |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @MarfanAware: A1: A1: Knowing what each is-SSI being for children or adults who have not put ample $'s into the SS system and SSDi which is based on what you have put in called work credits. #DysSupportChat |
| AutonomicRN© @AutonomicRN @bbhomebody Being denied is crushing, even though you expect it. #DysSupportChat |
| Jonathan Rodis @MarfanAware @lisadbudzinski #DysSupportChat there are ways to speed up the process in certain cases based on the severity of the claimant and the proper review channels used. | |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @MarfanAware: A2: A2: One the most important things is knowing what to write and what not to write. You should answer their questions completely but utilize any chance you have to refer to a physical limitation(s) you have. #DysSupportChat |
| Lisa Davis Budzinski @lisadbudzinski Don’t get frustrated with all the paperwork that will be coming in✨ #DysSupportChat |
| Jonathan Rodis @MarfanAware @bbhomebody #DysSupportChat havingan attorney is important when you reach the Reconsideration Stage of the process. It is very helpful to ahve someone that is recommended within your state. | |
| Dysautonomia Support Network @DysSupport Great point! #DysSupportChat https://t.co/B6XS55BECJ |
 | Simply Mom @mommashelping RT @lisadbudzinski: Come join in. Talking #socialsecurity #SSDI #DysSupportChat https://t.co/KfmzleCifG |
| Dysautonomia Support Network @DysSupport Q3: What was the hardest part about making the decision to file for #disability? #DysSupportChat https://t.co/9XdbnSnGHG |
| AutonomicRN© @AutonomicRN @lisadbudzinski And there's lots of it! #DysSupportChat |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @MarfanAware: @bbhomebody #DysSupportChat havingan attorney is important when you reach the Reconsideration Stage of the process. It is very helpful to ahve someone that is recommended within your state. |
| Lisa Davis Budzinski @lisadbudzinski A2 All the mail & paperwork that comes once application is filed. Just take a deep breath with each one & take care of it✨ #DysSupportChat https://t.co/WHSG1xJaOL |
| Jonathan Rodis @MarfanAware A3: Depending on a persons circumstances and/or age and stage of their career, three main players-financial considerations, health considerations and emotional considerations. Nobody wants to file for disability but its not a matter of wanting to, its needing to. #DysSupportChat | |
| AutonomicRN© @AutonomicRN A3: I felt like I was giving up a part of myself, part of my independence. I kept blaming myself that I was at a point that I was sick enough that I was unable to work. I kept hoping that I would wake up one morning and suddenly be healthy again. #DysSupportChat #chronicillness |
| Dysautonomia Support Network @DysSupport @GilmerHealthLaw Great suggestion, Erin! #DysSupportChat |
| Jonathan Rodis @MarfanAware #DysSupportChat it is indeed crushing but never give up. The first decision after you apply is almost always a denial. They want tos ee if you will walk away. https://t.co/ythqTCboRo | |
| AutonomicRN© @AutonomicRN @GilmerHealthLaw @DysSupport Thanks for jumping on Erin! #DysSupportChat |
| Dysautonomia Support Network @DysSupport RT @lisadbudzinski: A2 All the mail & paperwork that comes once application is filed. Just take a deep breath with each one & take care of it✨ #DysSupportChat https://t.co/WHSG1xJaOL |
| Oh TWIST! @H2OhTwist RT @AutonomicRN: Don't forget we're talking #disability tomorrow! Join us for #DysSupportChat #dysautonomia #POTS #GP #EDS #chiari @CSFinfo @TheEDSociety @teaminspire @bbhomebody @lisadbudzinski @RieOfLetters https://t.co/knMmUrqgGD |
| AutonomicRN© @AutonomicRN @GilmerHealthLaw @DysSupport @SleepyGirlGuide Good to know! #DysSupportChat |
| Rie Lopez, MPH (she/her) @RieOfLetters I still feel like this every morning... #chronicillness #DysSupportChat https://t.co/89mfL9xwRK |
| Inspire @InspireIsHealth RT @DysSupport: Q3: Q3: What was the hardest part about making the decision to file for #disability? #DysSupportChat https://t.co/9XdbnSnGHG |
| Jonathan Rodis @MarfanAware #DysSupportChat I went through this as well. Its the mind wrestling with the body. Not an easy bout to ahve to go though. https://t.co/Umfo0JnL4Q | |
| Lisa Davis Budzinski @lisadbudzinski A3 Trying not to feel like you have failed at life 😕 #DysSupportChat https://t.co/iuK5Jf4hwA |
| Dysautonomia Support Network @DysSupport RT @AutonomicRN: A3: A3: I felt like I was giving up a part of myself, part of my independence. I kept blaming myself that I was at a point that I was sick enough that I was unable to work. I kept hoping that I would wake up one morning and suddenly be healthy again. #DysSupportChat #chronicillness |
| Oh TWIST! @H2OhTwist RT @DysSupport: Today we are joined by guest, @MarfanAware, Jonathan Rodis, MBA. He is a National #Disability Advocate and also a member of the #DSN Board of Directors among many other affiliations. There is a wealth of knowledge here and we are excited to have him. #DysSupportChat |
| Dysautonomia Support Network @DysSupport @lisadbudzinski Trying to remain positive is something that is hard, but essential. #DysSupportChat |
| Jonathan Rodis @MarfanAware @bbhomebody #DysSupportChat I hear that Becky..I ahd a very lucrative career and I went from that to Medicare, etc. BUT..I ahd to..my health was degenerating quicker as I worked and took on more and more stress. | |
| AutonomicRN© @AutonomicRN @RieOfLetters Me too <3 #DysSupportChat |
| Dysautonomia Support Network @DysSupport Q4: Did you tell family and friends that you had applied? What was their reaction? #DysSupportChat https://t.co/jRe2HvONjp |
| Dysautonomia Support Network @DysSupport This!! This is it! #DysSupportChat https://t.co/3vLYKxe8yg |
| Jonathan Rodis @MarfanAware A4: I did & received very mixed responses. Some were sorry, tried to give comfort & others didn't know what to say. Disability isn't an easy page to turn. Some ppl take longer than others to come around or some don't react the way you think they would-esp family. #DysSupportChat | |
| AutonomicRN© @AutonomicRN A4: I told a couple family members and only very close friends. They understood and keep checking to see how things are going. They understood how frustrating it was, or at least they were supportive of it. #DysSupportChat |
| Lisa Davis Budzinski @lisadbudzinski A4 Thankfully they were the ones who told me it was time to do it✨ #DysSupportChat https://t.co/MEOih8y7IR |
| AutonomicRN© @AutonomicRN @lisadbudzinski That's awesome! I know I was trying to live in lala land! #DysSupportChat |
| Jonathan Rodis @MarfanAware @GilmerHealthLaw @bbhomebody @AutonomicRN @DysSupport #DysSupportChat Absolutely Erin..what is or is not in the medical records can sabotage a persons chances for approval. Get a copy of your medical records and see what has been written. they can be changed. | |
| Dysautonomia Support Network @DysSupport This is something for everyone to remember. You're records CAN be changed. #DysSupportChat https://t.co/fnShHmnElE |
| Lisa Davis Budzinski @lisadbudzinski @AutonomicRN Delaying the process can make our conditions much worse✨ #DysSupportChat |
| Jonathan Rodis @MarfanAware #DysSupportChat I actually wrote a few articles specifically explaining what it was like to be disabled and have an invisible disability. It has been very helpful not only with family..but the medical community. https://t.co/0ykQd0HUua | |
| AutonomicRN© @AutonomicRN @lisadbudzinski Absolutely #DysSupportChat |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @MarfanAware: @GilmerHealthLaw @bbhomebody @AutonomicRN @DysSupport #DysSupportChat Absolutely Erin..what is or is not in the medical records can sabotage a persons chances for approval. Get a copy of your medical records and see what has been written. they can be changed. |
| AutonomicRN© @AutonomicRN @bbhomebody @lisadbudzinski Amen to that! #DysSupportChat |
| Jonathan Rodis @MarfanAware @GilmerHealthLaw @bbhomebody @AutonomicRN @DysSupport #DysSupportChat or something they forgot to say or elaborate on. | |
| Jonathan Rodis @MarfanAware @bbhomebody #DysSupportChat invisble disability..can't we just win megabucks instead. : ) | |
| Inspire @InspireIsHealth RT @DysSupport: Q4: Q4: Did you tell family and friends that you had applied? What was their reaction? #DysSupportChat https://t.co/jRe2HvONjp |
| Lisa Davis Budzinski @lisadbudzinski @bbhomebody #invisibledisabilities #InvisibleIllness is tricky to live with. Not all disabilities look alike ✨ #DysSupportChat |
| Dysautonomia Support Network @DysSupport Q5: What is your advice for a younger adult who is applying for #Disability? #DysSupportChat https://t.co/LObcDoZLw6 |
 | Sarah Bramblette, MSHL @Born2lbFat RT @MarfanAware: A1: A1: Knowing what each is-SSI being for children or adults who have not put ample $'s into the SS system and SSDi which is based on what you have put in called work credits. #DysSupportChat |
| Dysautonomia Support Network @DysSupport Great point for everyone! #DysSupportChat https://t.co/qjvBhUNk9M |
| Jonathan Rodis @MarfanAware A5: Be prepared and work hard to make your doctors aware of what you live with each and every day. They are the cornerstone for your approval and what they put in your medical records carries the most weight. #DysSupportChat | |
| AutonomicRN© @AutonomicRN A5: As a younger adult who has gone through the process and now is having to file a new claim, make sure that you meet with an advocate before you file. There are so many things I know now that I didn't know initially. These are things that apply to everyone. #DysSupportChat |
| Rie Lopez, MPH (she/her) @RieOfLetters @bbhomebody It's a huge struggle when your illness is invisible. I'm glad that your mom was there for you when you needed her help. 💖 #DysSupportChat |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @MarfanAware: A5: A5: Be prepared and work hard to make your doctors aware of what you live with each and every day. They are the cornerstone for your approval and what they put in your medical records carries the most weight. #DysSupportChat |
| Dysautonomia Support Network @DysSupport RT @MarfanAware: A5: A5: Be prepared and work hard to make your doctors aware of what you live with each and every day. They are the cornerstone for your approval and what they put in your medical records carries the most weight. #DysSupportChat |
| AutonomicRN© @AutonomicRN RT @MarfanAware: A5: A5: Be prepared and work hard to make your doctors aware of what you live with each and every day. They are the cornerstone for your approval and what they put in your medical records carries the most weight. #DysSupportChat |
| AutonomicRN© @AutonomicRN @bbhomebody Definitely get a lawyer...a good one! #DysSupportChat |
| Lisa Davis Budzinski @lisadbudzinski This 👇! #DysSupportChat https://t.co/CjG2ipxAjM |
| Lisa Davis Budzinski @lisadbudzinski @bbhomebody It’s so much easier having an attorney who knows the ins & outs ✨ #DysSupportChat |
| Inspire @InspireIsHealth RT @DysSupport: Q5: Q5: What is your advice for a younger adult who is applying for #Disability? #DysSupportChat https://t.co/LObcDoZLw6 |
| Dysautonomia Support Network @DysSupport ADLs are huge #DysSupportChat https://t.co/txRnuAJACq |
| Jonathan Rodis @MarfanAware @lisadbudzinski #DysSupportChat as I wrote earlier..see if you can find an attorney in your state that is recommended by a local support group member that won with them and took the time to learn and stress their limitations through their representation. | |
| Dysautonomia Support Network @DysSupport Bonus Question: If you have been through the Judicial Hearing stage, was there anything unexpected that you wish you had known sooner? #DysSupportChat https://t.co/lJxfdNFIIE |
| AutonomicRN© @AutonomicRN @bbhomebody @lisadbudzinski Absolutely! #DysSupportChat |
| Jonathan Rodis @MarfanAware Bonus: Many times I hear that many of the steps that should have been taken in preparation were not and other steps that were taken were not quite what SS is looking for. It all comes to proof of limitation and the inability to work full time. #DysSupportChat | |
| AutonomicRN© @AutonomicRN Bonus: I wish that my lawyer would have prepped me much better and that my lawyer would have been much more knowledgeable about my conditions. I truly think I would have been more successful if I didn't show up for the hearing. #DysSupportChat |
| Dysautonomia Support Network @DysSupport RT @MarfanAware: @lisadbudzinski #DysSupportChat as I wrote earlier..see if you can find an attorney in your state that is recommended by a local support group member that won with them and took the time to learn and stress their limitations through their representation. |
| Lisa Davis Budzinski @lisadbudzinski @bbhomebody So very important! I think that dealing with high pain levels over a decade may give us a disadvantage of “masking” #DysSupportChat |
| AutonomicRN© @AutonomicRN @bbhomebody Total bonus! #DysSupportChat |
| Jonathan Rodis @MarfanAware @GilmerHealthLaw @KimEllisOnline @bbhomebody @AutonomicRN @DysSupport #DysSupportChat..that is okay neither am I..but you were spot on with your advice Erin. : ) | |
| Jonathan Rodis @MarfanAware @bbhomebody #DysSupportChat and how it limits you with back up research information and proper testing. | |
| Dysautonomia Support Network @DysSupport This is really a great chat today! #DysSupportChat |
| AutonomicRN© @AutonomicRN Agreed 110%! #DysSupportChat https://t.co/PEOIOHzZwW |
| Lisa Davis Budzinski @lisadbudzinski @GilmerHealthLaw @DysSupport Isn’t that awful?! One of the few times wanting to make a good impression can back fire 😳 #DysSupportChat |
| Dysautonomia Support Network @DysSupport With 5 minutes left, it's time for closing thoughts. What takeaways do you have from today and how will they be useful to you in the future? #DysSupportChat https://t.co/lqpxsgvUyY |
| Jonathan Rodis @MarfanAware #DysSupportChat unfortunately the system is getting tougher and that is why proper preparation is kay. I ahve been a national disability advocate for 17 years and I am shocked at how the system has changed. | |
| Jonathan Rodis @MarfanAware CT: Hopefully between our presentation and the dialogue in this Twitter Chat have answered many of your questions. Always feel free to ask more questions or to contact me for more support. #DysSupportChat | |
| AutonomicRN© @AutonomicRN CT: Great chat, thanks @MarfanAware for being here today! Looking forward to more chats like this! This is such an important topic. #DysSupportChat |
| Jonathan Rodis @MarfanAware @GilmerHealthLaw @bbhomebody #DysSupportChat that is why it is important to go to someone highly recommended. | |
| Christina Lizaso @btrfly12 RT @MarfanAware: A5: A5: Be prepared and work hard to make your doctors aware of what you live with each and every day. They are the cornerstone for your approval and what they put in your medical records carries the most weight. #DysSupportChat |
| Dysautonomia Support Network @DysSupport RT @MarfanAware: #DysSupportChat unfortunately the system is getting tougher and that is why proper preparation is kay. I ahve been a national disability advocate for 17 years and I am shocked at how the system has changed. |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @MarfanAware: CT: CT: Hopefully between our presentation and the dialogue in this Twitter Chat have answered many of your questions. Always feel free to ask more questions or to contact me for more support. #DysSupportChat |
| Lisa Davis Budzinski @lisadbudzinski RT @MarfanAware: #DysSupportChat unfortunately the system is getting tougher and that is why proper preparation is kay. I ahve been a national disability advocate for 17 years and I am shocked at how the system has changed. |
| Rie Lopez, MPH (she/her) @RieOfLetters CT: Great chat, as always. Such fantastic advice from everyone. Thank you!! #DysSupportChat |
| Dysautonomia Support Network @DysSupport A huge thank you to our guest, @MarfanAware, Jonathan Rodis for his time today. He will continue to comb through the chat in the coming days. Thank you for sharing you time and knowledge with us! The chat transcript and analytics will be posted within the hour. #DysSupportChat |
| Jonathan Rodis @MarfanAware #DysSupportChat I charge no fees for my services and I am still getting many people approved before the Reconsideration Stage even with the changes in approval rates on cases nationwide. . | |
| Dysautonomia Support Network @DysSupport Also remember if you have any questions regarding the disability process, please DM @DSNNurseAdvoc and we will forward the info onto Jonathan! #DysSupportChat |
| Dysautonomia Support Network @DysSupport RT @MarfanAware: #DysSupportChat I charge no fees for my services and I am still getting many people approved before the Reconsideration Stage even with the changes in approval rates on cases nationwide. . |
| Jonathan Rodis @MarfanAware #DysSupportChat take care everyone!! | |
| Inspire @InspireIsHealth RT @DysSupport: A huge thank you to our guest, @MarfanAware, Jonathan Rodis for his time today. He will continue to comb through the chat in the coming days. Thank you for sharing you time and knowledge with us! The chat transcript and analytics will be posted within the hour. #DysSupportChat |
| Rie Lopez, MPH (she/her) @RieOfLetters @MarfanAware You too! Thank you for some great information today. 😁 #DysSupportChat |
 | Tiffany Giasson @chronicallymee RT @DysSupport: Also remember if you have any questions regarding the disability process, please DM @DSNNurseAdvoc and we will forward the info onto Jonathan! #DysSupportChat |
| Dysautonomia Support Network @DysSupport Top Influencers of #DysSupportChat 👉 @DysSupport @bbhomebody @MarfanAware @AutonomicRN @teaminspire https://t.co/wLbvNBm61R via @symplur |
 | Jared Jeffery @Jk_Jeffery Worked in disability law for 4 years, can confirm. Even w/ advocate you get denied. Big difference? Less likely to get denied when the case goes before a judge (matters the most.) ALSO: Medical records are your "silver bullet." SEE. A. DOCTOR. Record everything. #DysSupportChat https://t.co/NBKXKCz5YD |
| Dysautonomia Support Network @DysSupport #DysSupportChat Healthcare Social Media Transcript July 23rd 2018 https://t.co/lZc5iQNkEE via @symplur |
| Jared Jeffery @Jk_Jeffery Additionally, some states began offloading welfare claims to SSI/DIB (to make it look like they'd cut welfare expenses. Politics.) Result: Judges got harsher on what they rule in favor of. Expect a hard fight, expect 6-24 months for full disability claim process. #DysSupportChat |
| Inspire @InspireIsHealth RT @DysSupport: #DysSupportChat Healthcare Social Media Transcript July 23rd 2018 https://t.co/lZc5iQNkEE via @symplur |
| Dysautonomia Support Network @DysSupport @MarfanAware Anytime :) #DysSupportChat |
 | Dr. Kate Shaw MA., MS., PsyD. @katelovesneuro RT @DysSupport: Also remember if you have any questions regarding the disability process, please DM @DSNNurseAdvoc and we will forward the info onto Jonathan! #DysSupportChat |
| Angela Cohen @angelee828 RT @DysSupport: Q1: Q1: What have you heard about #SSI and/or #SSDI that has been confusing? #DysSupportChat https://t.co/Giz9W6r5Ug |
| Angela Cohen @angelee828 @DysSupport 👋🏽 I’m Angela, catching up late from Wisconsin! #DysSupportChat |
| Angela Cohen @angelee828 @DysSupport A2: The paperwork. It’s repetitive+difficult as a chronic illness patient to do all of it. 2 of my drs don’t want to as well. They received the paperwork for my review, then told me why they don’t want to fill it out. It’s going to be a struggle I don’t need. #DysSupportChat |
| Angela Cohen @angelee828 @DysSupport A3: Mentally wrapping my head around the thought of going on disability in my 20’s. I felt like I was giving up. #DysSupportChat |
| Angela Cohen @angelee828 @DysSupport A4: I told some family/friends. They weren’t surprised and were glad I was doing it. They understood it was a hard decision. The waiting was terrible, but they were supportive. #DysSupportChat |
 | iSmart @getismart Wise words from on of the founding pioneers of the New Hollywood era and one of the most popular directors and producers in film history - Mr Steven Speilberg #edtech #dyslexia #socialenterprise #learningdifficulties #womenintech #adhd #autism #malta #educazione #DysSupportChat https://t.co/B0ZclbGv8X |
| iSmart @getismart Wise words from one of the founding pioneers of the New Hollywood era and most popular directors and producers in film history - Mr Steven Speilberg #edtech #dyslexia #socialenterprise #learningdifficulties #womenintech #adhd #autism #malta #educazione #DysSupportChat https://t.co/wXrgNPdU5g |
 | Michele Locke @michelelocke RT @getismart: Wise words from one of the founding pioneers of the New Hollywood era and most popular directors and producers in film history - Mr Steven Speilberg #edtech #dyslexia #socialenterprise #learningdifficulties #womenintech #adhd #autism #malta #educazione #DysSupportChat https://t.co/wXrgNPdU5g |
| Dysautonomia Support Network @DysSupport @angelee828 Having that support makes the process easier. It also takes some of the stress off of you because you aren’t having to worry what others think. #DysSupportChat |
| Dysautonomia Support Network @DysSupport @angelee828 Hi Angela! #DysSupportChat |
 | Mary Gold @MaryGol84688373 RT @AutonomicRN: A3: A3: I felt like I was giving up a part of myself, part of my independence. I kept blaming myself that I was at a point that I was sick enough that I was unable to work. I kept hoping that I would wake up one morning and suddenly be healthy again. #DysSupportChat #chronicillness |
#DysSupportChat content from Twitter.