#DysSupportChat Transcript
Healthcare social media transcript of the #DysSupportChat hashtag.
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| Profile | Tweet |
|---|---|
 | DysautonomiaSupport @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 @teaminspire 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 want… |
 | DSNNurseAdvocate @DSNNurseAdvoc 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 want… |
 | 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 want… |
| DysautonomiaSupport @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! |
| DysautonomiaSupport @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 Hartmann @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 #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… |
 | 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 #E… |
 | 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… |
| DSNNurseAdvocate @DSNNurseAdvoc 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… |
| Inspire @teaminspire 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… |
 | Rie Lopez, MPH @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… |
| 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 #E… |
 | 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… |
 | 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… |
 | FibroFlutters @FibroFlutters 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… |
 | DysNurse @DysNurse 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 want… |
 | 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… |
| FibroFlutters @FibroFlutters RT @AutonomicRN: Please share so we can reach as many people as possible. We will be joined by National Disability Advocate @JonMarf58 #dys… |
 | Carole Sian @scrufton73 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… |
 | 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… |
 | Dysautonomia Dreamer @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… |
| 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 B 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 @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… |
| 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 |
 | Chiari & Syringomyelia Foundation (CSF) @CSFinfo RT @AutonomicRN: Don't forget we're talking #disability tomorrow! Join us for #DysSupportChat #dysautonomia #POTS #GP #EDS #chiari @CSFinfo… |
| DysautonomiaSupport @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 |
 | Kelsey 🖊🦓✨ @kelseyhardin_ RT @DysSupport: 4 hours until we start talking #disability. Mark it down and come join us. #DysSupportChat #dysautonomia #EDS #Chiari #MCAD… |
| DysautonomiaSupport @DysSupport 2 hours left before our twitter chat! #DysSupportChat #dysautonomia #EDS #Chiari #MCAD #GP #chronicillness #disability |
| Dysautonomia Dreamer @DysDreamer RT @DysSupport: 4 hours until we start talking #disability. Mark it down and come join us. #DysSupportChat #dysautonomia #EDS #Chiari #MCAD… |
| Kimberly Hartmann @fireflyrn84 RT @DysSupport: 2 hours left before our twitter chat! #DysSupportChat #dysautonomia #EDS #Chiari #MCAD #GP #chronicillness #disability |
| DysautonomiaSupport @DysSupport Only 1 hour left! #DysSupportChat |
| DysautonomiaSupport @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 @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… |
| Inspire @teaminspire 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… |
| DysautonomiaSupport @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 |
| DysautonomiaSupport @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 @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 |
| DysautonomiaSupport @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 @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! |
| DysautonomiaSupport @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. |
| DysautonomiaSupport @DysSupport @RieOfLetters It's a huge topic to learn about without a doubt! #DysSupportChat |
| DysautonomiaSupport @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 |
 | Becky Brandt RN @bbhomebody Hi, I'm Becky RN, rare disease patient, advocate and dysautonomia supporter #DysSupportChat |
| AutonomicRN© @AutonomicRN @bbhomebody Hey Becky!! #DysSupportChat |
| DysautonomiaSupport @DysSupport @bbhomebody Glad you could join us today :) #DysSupportChat |
| DysautonomiaSupport @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: What have you heard about #SSI and/or #SSDI that has been confusing? #DysSupportChat https://t.co/Giz9W6r5Ug |
| Becky Brandt RN @bbhomebody @AutonomicRN Hi😀 #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 |
| DysautonomiaSupport @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 @teaminspire RT @RieOfLetters: For the next hour-ish, I will be tweeting interesting things from #DysSupportChat, where we'll be discussing the process… |
| Inspire @teaminspire Hello to #DysSupportChat, John Novack from Inspire checking in. |
| DysautonomiaSupport @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 |
| DysautonomiaSupport @DysSupport #DysSupportChat https://t.co/fsmX0fDNXN |
| Inspire @teaminspire 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… |
| DysautonomiaSupport @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 |
| DysautonomiaSupport @DysSupport @lisadbudzinski @Cpnervecenter @bbhomebody Hi Lisa! #DysSupportChat |
| Lisa Davis Budzinski @lisadbudzinski @DysSupport @Cpnervecenter @bbhomebody Hello 👋 #DysSupportChat |
| DysautonomiaSupport @DysSupport @KellyLewandows2 Hey Kelly! Glad you're here! #DysSupportChat |
| DysautonomiaSupport @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 |
| DysautonomiaSupport @DysSupport @MarfanAware Don't forget to put the # in front of #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 @DysSupport #DysSupportChat..I'm a newbie. : ) |
| AutonomicRN© @AutonomicRN So glad that you're here with us! Thanks! #DysSupportChat https://t.co/RzbQB5ay78 |
| DysautonomiaSupport @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 adv… |
| Lisa Davis Budzinski @lisadbudzinski A2 The time it takes. Very time consuming which is very difficult for #chronicillness patients. #DysSupportChat https://t.co/WHSG1xJaOL |
| DysautonomiaSupport @DysSupport @lisadbudzinski The time factor is huge, especially when income is limited. #DysSupportChat |
| Rie Lopez, MPH @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. |
| Becky Brandt RN @bbhomebody T2 Being denied is the hardest part. It's expensive to get an attorney but it helps in many cases #DysSupportChat https://t.co/zk2l3uogdb |
| DysautonomiaSupport @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 @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 @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. |
| DysautonomiaSupport @DysSupport RT @bbhomebody: T2 Being denied is the hardest part. It's expensive to get an attorney but it helps in many cases #DysSupportChat https://t… |
| Rie Lopez, MPH @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… |
| 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. |
| DysautonomiaSupport @DysSupport Great point! #DysSupportChat https://t.co/B6XS55BECJ |
 | Simply Mom @mommashelping RT @lisadbudzinski: Come join in. Talking #socialsecurity #SSDI #DysSupportChat https://t.co/KfmzleCifG |
| DysautonomiaSupport @DysSupport Q3: What was the hardest part about making the decision to file for #disability? #DysSupportChat https://t.co/9XdbnSnGHG |
| Becky Brandt RN @bbhomebody @AutonomicRN Yes! It's sad but true....the first denial is almost a given for most patients I've talked to. #DysSupportChat |
| AutonomicRN© @AutonomicRN @lisadbudzinski And there's lots of it! #DysSupportChat |
 | Erin Gilmer @GilmerHealthLaw @DysSupport Jumping in here to say that anyone applying for disability should check out https://t.co/RYYNR542N9 #DysSupportChat |
| Rie Lopez, MPH @RieOfLetters RT @MarfanAware: @bbhomebody #DysSupportChat havingan attorney is important when you reach the Reconsideration Stage of the process. It is… |
| Erin Gilmer @GilmerHealthLaw @DysSupport Going to https://t.co/8ssNFlL6De is really useful too. #DysSupportChat |
| 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 |
| 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 |
| DysautonomiaSupport @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 |
| DysautonomiaSupport @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… |
| Rie Lopez, MPH @RieOfLetters RT @GilmerHealthLaw: @DysSupport Jumping in here to say that anyone applying for disability should check out https://t.co/RYYNR542N9 #DysSu… |
| Lisa Davis Budzinski @lisadbudzinski RT @GilmerHealthLaw: @DysSupport Going to https://t.co/8ssNFlL6De is really useful too. #DysSupportChat |
| Erin Gilmer @GilmerHealthLaw @DysSupport Thanks. @SleepyGirlGuide is amazing with her site. I was truly impressed. Including for disability review information. #DysSupportChat |
| Oh TWIST! @H2OhTwist RT @AutonomicRN: Don't forget we're talking #disability tomorrow! Join us for #DysSupportChat #dysautonomia #POTS #GP #EDS #chiari @CSFinfo… |
| AutonomicRN© @AutonomicRN @GilmerHealthLaw @DysSupport @SleepyGirlGuide Good to know! #DysSupportChat |
| Erin Gilmer @GilmerHealthLaw @AutonomicRN @DysSupport No problem. Love to help others with info to support them for disability applications. It's hard but there are great resources out there to help. No lawyer would take my case, I was not an expert, but using the info I got through it in less than 4 months. #DysSupportChat |
| Rie Lopez, MPH @RieOfLetters I still feel like this every morning... #chronicillness #DysSupportChat https://t.co/89mfL9xwRK |
| Inspire @teaminspire RT @DysSupport: 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 |
| Becky Brandt RN @bbhomebody Q3 Knowing I would lose half of my income, and half of what I needed to pay for my current life. #DysSupportChat https://t.co/f5r7sZpX0l |
| Lisa Davis Budzinski @lisadbudzinski A3 Trying not to feel like you have failed at life 😕 #DysSupportChat https://t.co/iuK5Jf4hwA |
| Erin Gilmer @GilmerHealthLaw RT @lisadbudzinski: A3 Trying not to feel like you have failed at life 😕 #DysSupportChat https://t.co/iuK5Jf4hwA |
| DysautonomiaSupport @DysSupport 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… |
| Becky Brandt RN @bbhomebody @GilmerHealthLaw @AutonomicRN @DysSupport Wow! I wish I had known you years ago Erin! It's so nice of you to help others going thru the process. #DysSupportChat |
| 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… |
| DysautonomiaSupport @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 |
| Becky Brandt RN @bbhomebody Exactly! 👇👇👇 #DysSupportChat https://t.co/SQ4GvVsKzy |
| Erin Gilmer @GilmerHealthLaw @bbhomebody @AutonomicRN @DysSupport I also found getting my own records to check that anything a doctor might say that would set me back could be explained. Usually it's something small in the records. They say they'll get them for you but you need to look at them yourself. #DysSupportChat |
| DysautonomiaSupport @DysSupport Q4: Did you tell family and friends that you had applied? What was their reaction? #DysSupportChat https://t.co/jRe2HvONjp |
| Rie Lopez, MPH @RieOfLetters RT @GilmerHealthLaw: @bbhomebody @AutonomicRN @DysSupport I also found getting my own records to check that anything a doctor might say tha… |
| DysautonomiaSupport @DysSupport This!! This is it! #DysSupportChat https://t.co/3vLYKxe8yg |
| DysautonomiaSupport @DysSupport RT @GilmerHealthLaw: @bbhomebody @AutonomicRN @DysSupport I also found getting my own records to check that anything a doctor might say tha… |
| 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 |
| Lisa Davis Budzinski @lisadbudzinski A4 Thankfully they were the ones who told me it was time to do it✨ #DysSupportChat https://t.co/MEOih8y7IR |
| Becky Brandt RN @bbhomebody @lisadbudzinski Indeed! Feeling like crap AND feeling like a failure! Its alot to swallow! #DysSupportChat |
| 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. |
| DysautonomiaSupport @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 |
| Erin Gilmer @GilmerHealthLaw @MarfanAware @bbhomebody @AutonomicRN @DysSupport Almost every time I've talked to another denied pt, it comes down to a word or 2 in the medical records. They don't even need to be changed as much as explained. Like a note that you show up to appts showered w/ hair brushed. You can explain that it is rare. #DysSupportChat |
| Rie Lopez, MPH @RieOfLetters RT @MarfanAware: @GilmerHealthLaw @bbhomebody @AutonomicRN @DysSupport #DysSupportChat Absolutely Erin..what is or is not in the medical re… |
| Becky Brandt RN @bbhomebody Q4 My mom helped me apply. I was too sick to do it on my own, and I was in the process of losing all of my assets. But, It took years for all of my family to finally just accept it since I dont look sick on the outside. #DysSupportChat https://t.co/zWadpDQRio |
| 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. |
| Erin Gilmer @GilmerHealthLaw @bbhomebody That's the hardest for people to understand. When you don't look sick or don't look sick "enough." I still get that constantly... #DysSupportChat |
| Jonathan Rodis @MarfanAware @bbhomebody #DysSupportChat invisble disability..can't we just win megabucks instead. : ) |
| Inspire @teaminspire RT @DysSupport: 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 |
| DysautonomiaSupport @DysSupport Q5: What is your advice for a younger adult who is applying for #Disability? #DysSupportChat https://t.co/LObcDoZLw6 |
| Erin Gilmer @GilmerHealthLaw @MarfanAware @bbhomebody @AutonomicRN @DysSupport Exactly. And you can get support from other doctors that say even if it was noted once, that is not typical for you. It's all about having the real picture of you as a whole. Med records often only look at a point in time & those points determine everything. #DysSupportChat |
 | Sarah Bramblette @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… |
| Becky Brandt RN @bbhomebody @MarfanAware I'm with you there! Especially if we can win this week! #DysSupportChat |
| DysautonomiaSupport @DysSupport Great point for everyone! #DysSupportChat https://t.co/qjvBhUNk9M |
| 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 @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 @RieOfLetters 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… |
| DysautonomiaSupport @DysSupport 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 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… |
| Rie Lopez, MPH @RieOfLetters RT @GilmerHealthLaw: @MarfanAware @bbhomebody @AutonomicRN @DysSupport Exactly. And you can get support from other doctors that say even if… |
| Becky Brandt RN @bbhomebody Q5 I'd advise almost anyone to get a lawyer. After 2 denials, I was at rock bottom physically and emotionally. My lawyer knew what to do and luckily the doctor adjudicating my case knew of my disease and didn't make me go through a trial. #DysSupportChat https://t.co/7FbikCikRt |
| AutonomicRN© @AutonomicRN @bbhomebody Definitely get a lawyer...a good one! #DysSupportChat |
| DysautonomiaSupport @DysSupport RT @bbhomebody: Q5 I'd advise almost anyone to get a lawyer. After 2 denials, I was at rock bottom physically and emotionally. My lawyer… |
| Lisa Davis Budzinski @lisadbudzinski This 👇! #DysSupportChat https://t.co/CjG2ipxAjM |
| Erin Gilmer @GilmerHealthLaw @KimEllisOnline @MarfanAware @bbhomebody @AutonomicRN @DysSupport But they look closely at ADLs. They think if you can do ADLs, you can show up and open mail 4 hours a day. Remember, they are looking to see if you can do the minimum energy jobs. Can you sit and be a Walmart greeter? ADLs matter A LOT. #DysSupportChat |
| Lisa Davis Budzinski @lisadbudzinski @bbhomebody It’s so much easier having an attorney who knows the ins & outs ✨ #DysSupportChat |
| Inspire @teaminspire RT @DysSupport: Q5: What is your advice for a younger adult who is applying for #Disability? #DysSupportChat https://t.co/LObcDoZLw6 |
| AutonomicRN© @AutonomicRN RT @GilmerHealthLaw: @KimEllisOnline @MarfanAware @bbhomebody @AutonomicRN @DysSupport But they look closely at ADLs. They think if you can… |
| DysautonomiaSupport @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. |
| DysautonomiaSupport @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 |
| Becky Brandt RN @bbhomebody @lisadbudzinski Faking a smile makes people think you're ok. Even the people who see me everyday have no idea i'm at a 6 or 7 on the pain scale almost all the time. Don't mask your pain- try to be honest about it #DysSupportChat #intractablepain |
| Erin Gilmer @GilmerHealthLaw @KimEllisOnline @MarfanAware @bbhomebody @AutonomicRN @DysSupport Sure. It's important to be detailed on ADLs too. Like can you brush your hair and make your meals every day? Can you carry groceries in? Those are some of the crucial details people miss (which is why they get denied). #DysSupportChat |
| AutonomicRN© @AutonomicRN @bbhomebody @lisadbudzinski 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 |
| DysautonomiaSupport @DysSupport RT @GilmerHealthLaw: @KimEllisOnline @MarfanAware @bbhomebody @AutonomicRN @DysSupport Sure. It's important to be detailed on ADLs too. Lik… |
| DysautonomiaSupport @DysSupport RT @MarfanAware: @lisadbudzinski #DysSupportChat as I wrote earlier..see if you can find an attorney in your state that is recommended by a… |
| Erin Gilmer @GilmerHealthLaw @KimEllisOnline @MarfanAware @bbhomebody @AutonomicRN @DysSupport Should mention that everything here is just my own personal experience, not legal advice. I'm not a disability lawyer. #DysSupportChat |
| 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 |
| Becky Brandt RN @bbhomebody Bonus-Make sure that the doctor checking out your disability case actually knows what your disease is. #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. : ) |
| Erin Gilmer @GilmerHealthLaw @MarfanAware In ability to work 4 hours a day/5 days a week (a little less than full time really) or make enough money. I'd also add not just proof of limitation but proof that no reasonable accommodations could be made to help you work even with limitation. #DysSupportChat |
| Jonathan Rodis @MarfanAware @bbhomebody #DysSupportChat and how it limits you with back up research information and proper testing. |
| DysautonomiaSupport @DysSupport This is really a great chat today! #DysSupportChat |
| Becky Brandt RN @bbhomebody @MarfanAware @GilmerHealthLaw @KimEllisOnline @AutonomicRN @DysSupport Erin @GilmerHealthLaw is a ROCKSTAR! #DysSupportChat |
| Erin Gilmer @GilmerHealthLaw @DysSupport I didn't go to a hearing but I know many who do and who show up dressed to the nines because they think they need to look nice for court. It doesn't help. #DysSupportChat |
| AutonomicRN© @AutonomicRN Agreed 110%! #DysSupportChat https://t.co/PEOIOHzZwW |
| Becky Brandt RN @bbhomebody @DysSupport Yes it sure is! #DysSupportChat |
| Erin Gilmer @GilmerHealthLaw @bbhomebody I think lawyers can be good but a lot can be skeezy and there are just disability farms out there that don't care about patients - just take as many cases as possible to get the full amount. #DysSupportChat |
| 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 |
| Erin Gilmer @GilmerHealthLaw @bbhomebody @MarfanAware @KimEllisOnline @AutonomicRN @DysSupport Thank you! Glad to help. Just want to make sure no one takes it as advice and gets upset if it doesn't work the same. Each case is different of course. #DysSupportChat |
| DysautonomiaSupport @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 |
| Becky Brandt RN @bbhomebody @GilmerHealthLaw So true! I feel lucky to have had a good one! #DysSupportChat |
| 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. |
| Erin Gilmer @GilmerHealthLaw @bbhomebody I guess the key is just looking into whatever lawyer you hire (which is a good idea when hiring a lawyer for anything). Make sure you feel comfortable with them and know you can change. #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 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. |
| Christina Lizaso @btrfly12 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… |
| DysautonomiaSupport @DysSupport RT @MarfanAware: #DysSupportChat unfortunately the system is getting tougher and that is why proper preparation is kay. I ahve been a nati… |
| Rie Lopez, MPH @RieOfLetters RT @MarfanAware: CT: Hopefully between our presentation and the dialogue in this Twitter Chat have answered many of your questions. Always… |
| 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 nati… |
| Rie Lopez, MPH @RieOfLetters CT: Great chat, as always. Such fantastic advice from everyone. Thank you!! #DysSupportChat |
| DysautonomiaSupport @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. . |
 | Beyond Embarrassment @TrudyTriumph RT @bbhomebody: Hi, I'm Becky RN, rare disease patient, advocate and dysautonomia supporter #DysSupportChat |
| Erin Gilmer @GilmerHealthLaw @DysSupport CT: The disability process doesn't necessarily stop with approval. Getting on Medicare takes 2 years (& you may be eligible for low income programs). There are disability reviews which can come at different intervals. And loan discharge may be a thing to look into #DysSupportChat |
| DysautonomiaSupport @DysSupport Also remember if you have any questions regarding the disability process, please DM @DSNNurseAdvoc and we will forward the info onto Jonathan! #DysSupportChat |
| Becky Brandt RN @bbhomebody CT Thanks everyone! Great chat today, valuable information. #DysSupportChat https://t.co/SPF7NJYRXu |
| DysautonomiaSupport @DysSupport RT @MarfanAware: #DysSupportChat I charge no fees for my services and I am still getting many people approved before the Reconsideration St… |
| Jonathan Rodis @MarfanAware #DysSupportChat take care everyone!! |
| Inspire @teaminspire RT @DysSupport: A huge thank you to our guest, @MarfanAware, Jonathan Rodis for his time today. He will continue to comb through the chat i… |
| Rie Lopez, MPH @RieOfLetters @MarfanAware You too! Thank you for some great information today. 😁 #DysSupportChat |
 | Tiffany @heyitsTiffanytt RT @DysSupport: Also remember if you have any questions regarding the disability process, please DM @DSNNurseAdvoc and we will forward the… |
| DysautonomiaSupport @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 |
| DysautonomiaSupport @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 |
 | Barbara @Wyobar RT @GilmerHealthLaw: @DysSupport Jumping in here to say that anyone applying for disability should check out https://t.co/RYYNR542N9 #DysSu… |
 | George Gibson @ggibsonD35 RT @GilmerHealthLaw: @DysSupport Jumping in here to say that anyone applying for disability should check out https://t.co/RYYNR542N9 #DysSu… |
| Inspire @teaminspire RT @DysSupport: #DysSupportChat Healthcare Social Media Transcript July 23rd 2018 https://t.co/lZc5iQNkEE via @symplur |
| DysautonomiaSupport @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… |
| Doug Lindsay @Doug_Lind_Say 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… |
| Angela Cohen @angelee828 RT @DysSupport: 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 |
 | Sleepy Girl 🍭 @SleepyGirlGuide RT @GilmerHealthLaw: @DysSupport Jumping in here to say that anyone applying for disability should check out https://t.co/RYYNR542N9 #DysSu… |
 | 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 |
 | EdTech @EdGameTec RT @getismart: Wise words from one of the founding pioneers of the New Hollywood era and most popular directors and producers in film histo… |
 | 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 histo… |
| DysautonomiaSupport @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 |
| DysautonomiaSupport @DysSupport @angelee828 Hi Angela! #DysSupportChat |
 | LHowlett-Lowe @sbrandgo RT @getismart: Wise words from one of the founding pioneers of the New Hollywood era and most popular directors and producers in film histo… |
 | MSpals @MSpals RT @bbhomebody: Q5 I'd advise almost anyone to get a lawyer. After 2 denials, I was at rock bottom physically and emotionally. My lawyer… |
 | Mary Gold @MaryGol84688373 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… |
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