#DysSupportChat Transcript
Healthcare social media transcript of the #DysSupportChat hashtag.
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See #DysSupportChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
| @ 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 [REDACTED USER] #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 #dys… |
 | 🥄☮️Kate💞🇺🇸🥄 @KateMuno RT @AutonomicRN: Please share so we can reach as many people as possible. We will be joined by National Disability Advocate @JonMarf58 #dys… |
 | Doug Lindsay @Doug_Lind_Say RT @AutonomicRN: Please share so we can reach as many people as possible. We will be joined by National Disability Advocate @JonMarf58 #dys… |
 | 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 #dys… |
 | 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 #E… |
 | OhTWIST.bsky.social now too @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 #E… |
 | 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 #E… |
 | 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 #E… |
 | ribbonrx @ribbonrx RT @AutonomicRN: Please share so we can reach as many people as possible. We will be joined by National Disability Advocate @JonMarf58 #dys… |
 | 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 #E… |
 | 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 #dys… |
| AutonomicRN© @AutonomicRN Don't forget we're talking #disability tomorrow! Join us for #DysSupportChat #dysautonomia #POTS #GP #EDS #chiari @CSFinfo @TheEDSociety @teaminspire @bbhomebody [REDACTED USER] @RieOfLetters https://t.co/knMmUrqgGD |
| Angela Cohen @angelee828 @AutonomicRN @CSFinfo @TheEDSociety @teaminspire @bbhomebody [REDACTED USER] @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… |
| AutonomicRN© @AutonomicRN This is a great resource for everyone and the disability application process! #DysSupportChat https://t.co/ON0arMV4kW |
| 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 |
| 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! |
| AutonomicRN© @AutonomicRN @bbhomebody Hey Becky!! #DysSupportChat |
| 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 |
| 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… |
| Inspire @InspireIsHealth Hello to #DysSupportChat, John Novack from Inspire checking in. |
| AutonomicRN© @AutonomicRN @teaminspire Hey John! Glad you're here! #DysSupportChat |
| AutonomicRN© @AutonomicRN [REDACTED USER] @Cpnervecenter @bbhomebody Hey girlie! Glad to see you! #DysSupportChat |
| AutonomicRN© @AutonomicRN @KellyLewandows2 Hey Kelly! #DysSupportChat |
| Kelly Lewandowski @KellyLewandows2 Hi! #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 |
| 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 |
| Kelly Lewandowski @KellyLewandows2 The one question I hear is, can you work some and get disability? #dyssupportchat |
| Jonathan Rodis @MarfanAware [REDACTED USER] #DysSupportChat..I'm a newbie. : ) |
| AutonomicRN© @AutonomicRN So glad that you're here with us! Thanks! #DysSupportChat https://t.co/RzbQB5ay78 |
 | nobism @nobismhealth RT @AutonomicRN: I'm Kim, tweeting from Wisconsin. #healthcare experience and #chronicillness blogger, #raredisease and #patientjourney adv… |
| 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. |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @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… |
| AutonomicRN© @AutonomicRN @bbhomebody Being denied is crushing, even though you expect it. #DysSupportChat |
| Jonathan Rodis @MarfanAware [REDACTED USER] #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: One the most important things is knowing what to write and what not to write. You should answer their questions compl… |
| 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. |
| AutonomicRN© @AutonomicRN [REDACTED USER] 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… |
| 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 |
| 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 |
| 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 [REDACTED USER] Thanks for jumping on Erin! #DysSupportChat |
| OhTWIST.bsky.social now too @H2OhTwist RT @AutonomicRN: Don't forget we're talking #disability tomorrow! Join us for #DysSupportChat #dysautonomia #POTS #GP #EDS #chiari @CSFinfo… |
| AutonomicRN© @AutonomicRN @GilmerHealthLaw [REDACTED USER] @SleepyGirlGuide Good to know! #DysSupportChat |
| Rie Lopez, MPH (she/her) @RieOfLetters I still feel like this every morning... #chronicillness #DysSupportChat https://t.co/89mfL9xwRK |
| 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 |
| 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 |
| 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 |
| 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 [REDACTED USER] That's awesome! I know I was trying to live in lala land! #DysSupportChat |
| Jonathan Rodis @MarfanAware @GilmerHealthLaw @bbhomebody @AutonomicRN [REDACTED USER] #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. |
| 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 [REDACTED USER] Absolutely #DysSupportChat |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @MarfanAware: @GilmerHealthLaw @bbhomebody @AutonomicRN [REDACTED USER] #DysSupportChat Absolutely Erin..what is or is not in the medical re… |
| AutonomicRN© @AutonomicRN @bbhomebody [REDACTED USER] Amen to that! #DysSupportChat |
| Jonathan Rodis @MarfanAware @GilmerHealthLaw @bbhomebody @AutonomicRN [REDACTED USER] #DysSupportChat or something they forgot to say or elaborate on. |
| Jonathan Rodis @MarfanAware @bbhomebody #DysSupportChat invisble disability..can't we just win megabucks instead. : ) |
 | Sarah Bramblette, MSHL @Born2lbFat RT @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… |
| 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 |
| 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 |
| 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 |
| AutonomicRN© @AutonomicRN RT @MarfanAware: A5: Be prepared and work hard to make your doctors aware of what you live with each and every day. They are the cornersto… |
| AutonomicRN© @AutonomicRN @bbhomebody Definitely get a lawyer...a good one! #DysSupportChat |
| Jonathan Rodis @MarfanAware [REDACTED USER] #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. |
| AutonomicRN© @AutonomicRN @bbhomebody [REDACTED USER] Absolutely! #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 |
| 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 @bbhomebody Total bonus! #DysSupportChat |
| Jonathan Rodis @MarfanAware @GilmerHealthLaw @KimEllisOnline @bbhomebody @AutonomicRN [REDACTED USER] #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. |
| AutonomicRN© @AutonomicRN Agreed 110%! #DysSupportChat https://t.co/PEOIOHzZwW |
| @munirax92 RT @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 tha… | |
| 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. |
| 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 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 |
| Jonathan Rodis @MarfanAware @GilmerHealthLaw @bbhomebody #DysSupportChat that is why it is important to go to someone highly recommended. |
| Rie Lopez, MPH (she/her) @RieOfLetters RT @MarfanAware: CT: Hopefully between our presentation and the dialogue in this Twitter Chat have answered many of your questions. Always… |
| Rie Lopez, MPH (she/her) @RieOfLetters CT: Great chat, as always. Such fantastic advice from everyone. Thank you!! #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. . |
| Jonathan Rodis @MarfanAware #DysSupportChat take care everyone!! |
| Rie Lopez, MPH (she/her) @RieOfLetters @MarfanAware You too! Thank you for some great information today. 😁 #DysSupportChat |
 | 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 |
| 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 |
| Angela Cohen @angelee828 [REDACTED USER] 👋🏽 I’m Angela, catching up late from Wisconsin! #DysSupportChat |
| Angela Cohen @angelee828 [REDACTED USER] 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 [REDACTED USER] 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 [REDACTED USER] 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 |
 | Maggie Franken @maggiefranken [REDACTED USER] @MarfanAware @CSFinfo @TheEDSociety @teaminspire DINET is a cruel sham. Pts on the forum tortured by MDs but not allowed 2say so. Can b fixed w/turbinate surgery since 2001. Changes the way blood flows. MDs practice that confused look. Human rights violations. |
#DysSupportChat content from Twitter.