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BrittanyBee

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Reply with quote  #31 
So here's a problem getting SSI or SSDI for me... I've had CVS since I was 11. I wasn't officially diagnosed until about a week ago (I'm 29 now). My parents were uhhh not the best and only took me to the doctor if I literally looked like I was dying. We were pretty poor, but also they were terrible parents, but yeah, that mentality wore off on me, so I learned to deal with everything on my own. I never go to the ER. I stay home and deal with it on my own and eat and drink where I can and hope I don't die.

As an adult, I was lucky to live with my best friend who would run out to the store during bad episodes and get me broth, soup, saltines, sprite, meal drinks, anything i asked for to try to choke down to keep me alive, and it has worked. So I have no records of going to the ER. I did, however, have to drop out of regular school the last year and a half of high school (I was a high honors student) and go to alternative school 3 hours a day (when I could) and it took me 7 years to finish college because I had to drop classes from having too many absences. Even if I had an A, I would have automatically failed after 4 absences. For example, I missed my Japanese final freshman year, bent over the toilet. I tried to explain the situation to my professor and he told me I needed to eat more and sleep and have less stress (he didn't believe me and thought it was freshman stress. He failed me from the A I had for missing the final. I had to wait another year to retake that class, and that happened over and over with others... So yeah. There's that.

I also haven't been able to hold a job for more than a couple months without racking up a ridiculous number of absences. I was never late and I worked my butt off even on days when I was sick and came in anyway and had to run to the bathroom at a couple of them, but... no ER days. I never went to the doctor on days I was puking because I knew it would stop and that they couldn't help anyway. No medical bills for that to show them. Just a big chunk of medical bills in 2012 where I came really close to dying and decided I needed to put myself in the massive debt to get a diagnosis before I did actually die. How do I even go about proving that as disability? (And thanks in advance, I'm super bad at asking for help)
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ginny

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Reply with quote  #32 
I just "bumped" up a couple of threads that might be helpful.  These will show as new threads and both have KLConnor participating.  Kate was able to get SSDI and was kind enough to post about how she went about things.

You can search for more posts on SSI or SSDI and for KLConnor in the search function.

There is also information on the CVSA web page that might help you.

Good luck, please let us know how you are doing.

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ginny CVSA Moderator
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jmeveringham

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Reply with quote  #33 
Please,get the NOLO Press Guide to getting and keeping your SSI or SsDi- on Amazon..$15.It makes very things very clear.You can also use the library copy.

Follow Kate Conners' counsel.She is one of our best resources.

During my final hearing, one of the MDs on the speaker phone, called my messed up job history '' my repeated work attempts' rather than any kind of backsliding.My repeated attempts to find out what I had ,he saw as a good faith attempt,which continued.I had many things. We won.

Prepare,educate yourself.You will need to understand it to get your benefits.Don't forget to read their website, or call and go to your local Federal offices to get questions answered in person. Lines are long.Take supplies.Be nice to the clerks,they have an awful job.

Good luck!
Jessica
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wynnak

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Reply with quote  #34 
Gonna post this here because I can't find KLConnor post about SSI or SSDI. 

Participated in a webinar, recently, that had really good information about the process and obstacles for applying for SSI or SSDI. 

“Navigating employment challenges and when to apply for Social Security Disability” with Rebecca Ray of Allsup. (Due to a technical error, the presentation did not display fully. To download the full slides, click here.)
Click on the PDF and scroll through. Talks about making sure you compare the condition to one of the 14 conditions that are approved. We have seen seizures used for this purpose.

The group presenting on this was https://www.allsup.com/ and they look to have an option for assisting in the process.  

Please let me know if anyone tries it!! Would love to hear if they are successful in aiding CVS patients. 

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Blynda
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shayden

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Reply with quote  #35 
Blynda - 

My employer-sponsored LTD insurance company is requiring that I file for SSDI, and they have hired Allsup to assist me in the application process. I am just now starting the process, but will be able to relay my experience in using their services....
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wynnak

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Reply with quote  #36 
I have seen some wonderful stuff about AllSup. Let us know how it goes. 
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Blynda
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