#DysSupportChat Transcript

Healthcare social media transcript of the #DysSupportChat hashtag.
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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…
#DysSupportChat content from Twitter.