Guest Julia59 Posted January 8, 2005 Report Share Posted January 8, 2005 Sorry people this is going to be a vent---so if your not in the mood, I don't blame you----just exit out of this post.I received a notice today telling me I need to see their doctor. Out of the multitudes of medical records sent by four different doctors to prove I am falling apart at the seams-IT'S NOT ENOUGH!This doc they are sending me too works for them----so basically i'll probably be on trial----and since I look good-------i'm screwed. He probably won't have a clue what dysautonomia/POTS, RO (retroflex odontoid), chiari malformation, small posterior fossa, cervical/cranial instability, EDS, and cranial settling is----or what it does to my body.First of all---I feel like jumping off the bridge as it is---wihout the SSDI issues.It's hard for me---as I have a lot riding on this. If I don't get approved, it will be very difficult to handle the expences if I have to go to New York. If I end up needing surgery-------it's going to be a longer stay because my surgery will be a cervical/cranial fusion, posterior fossa decompression, shaving of the RO, and rods placed to hold my head up. Atleast that is how it is done for people diagnosed with the same thing I have----so don't quote me on that. I just know my stay will be longer then my stay when I went to Chicago for the anterior discectomy/fusion----titanium plating.I keep having more and more problems--------I'm sliding backwards----reeling more like it--I can literally feel the instabiltiy-----it's BAD----scarey BAD---slurring my speech BAD------------forgetting words BAD----------never mind------------it's just plain BAD. I feel guilty whining about my finances because I know others are in worse shape. It's just one more thing we don't need----sorry.............................Anyone file for SSDI who lives in Ohio?I just want to go to bed and stay there....................Thanks for letting me vent...........................Julie :0( Quote Link to comment Share on other sites More sharing options...
blackwolf Posted January 8, 2005 Report Share Posted January 8, 2005 Dear Julie, I was just about to get off when I saw your post.I am SSSOOOO sorry anyone has to go thru all those SSDI hoops. It took us 3 1/2 years to get my approval. I won't bore you with my story. Just please hang in there. It is one of the hardest things we ever did, but now we have enough to get by on and we are happy where we are now. I'm sending you some good vibes.Try to get some rest, read a good book, watch a movie, beat on a pillow, etc. and forget about the world out there for a while.my prayers for you,Blackwolf Quote Link to comment Share on other sites More sharing options...
steph37822 Posted January 8, 2005 Report Share Posted January 8, 2005 oops Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 8, 2005 Report Share Posted January 8, 2005 Hi Julie, no, I don't live in Ohio but the SSDI process is long and tiring here too! I'm still waiting to hear the judges decision...I was told 75 days from my last hearing...I have only to say that we must try our best and do use a lawyer who specializes in this! Hang in there, tearose Quote Link to comment Share on other sites More sharing options...
DawnA Posted January 8, 2005 Report Share Posted January 8, 2005 Julie, The Docter that I saw for SSDI gave me one of the most thourough exams that I have ever have. In his report he did not miss anything and found things other neurologists had missed. This Dr has a private practice too. They usually do more than work for SSDI, if this makes you feel any better. I hope you have as good of luck as me. Before I went to my appoinment I made sure to overextend myself, so I was in bad shape. It did not take much to do this.Best Wishes,Dawn A Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted January 8, 2005 Report Share Posted January 8, 2005 Dawn----LOLAll i'll have to do is miss one night of sleep---or get three hours........I'm a terrible mess if I don't sleep.I also have another question. I'm wearing a thoracic/cervico vest-collar 3 hours a day and in the car always. Would it look like i'm trying to be dramatic if I wear it into his office? On the other hand I don't want it to look like i'm being non-compliant with Dr. Bolognese--my NSG eaither. Another thing I can do is go to the grocery store and pick up a few items----thst will mess me up too. Too bad the summer heat isn't here---LOL.It's a shame, because I really struggle with each day to get though it ----and I know it would be impossible for any employer to count of me in the shape i'm in.Thanks everyone for your support! I know you have all been through one mess or another----and I just appreciate that you took the time to answer my post when you have enough of your own problems.Julie :0) Quote Link to comment Share on other sites More sharing options...
steph37822 Posted January 8, 2005 Report Share Posted January 8, 2005 oops Quote Link to comment Share on other sites More sharing options...
DancingLight Posted January 9, 2005 Report Share Posted January 9, 2005 julie,do you have a lawyer yet? i know i sound like a broken record, but that is what i would do. it cost me nothing compared to the years of medical coverage. it was maybe $250. they can only take a small percentage. all my lawyer did was disability.in the end, the appt. with 'their' dr. didn't hurt me. i did get denied a bunch too and unlike steph, when i went to my hearing the report was scathing about how i was healthy and blah de blah.if you can knit for a hobby you can work! okay, sorry, i'm grumpy tonight too.i have SSI, not SSDI. i will tell you though, that when i applied at first i had the diagnosis of CFS and NMH. during the process i went to see dr. Grubb. He diagnosed me with POTS and EDS. Well, they saw EDS and boom, that changed my approval around and I got it.So, you might actually be okay with your diagnoses. It is stressful, I can't say otherwise. And the process is so hard.But, YOU WILL WIN. YOU WILL GET IT. what they want is for you to give up. and, i know you, you won't!!!!so, hang on julie, we're all behind you.emily Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted January 9, 2005 Report Share Posted January 9, 2005 Oh Gosh-thanks Emily---and all of you again.I'm hanging. Today I will get all my paper work together again. Right now i'm not feeling too bad---so I better get working on that.Wishing you all the best. Julie :0) Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted January 10, 2005 Report Share Posted January 10, 2005 Julie-I'm in OH and I used to work for SSDI determination in OH. If you would like to email me privately, I would be more than happy to try to help you.Is this your first application? Actually, them sending you to a dr is a good sign. It means that the adjudicator is trying HARD to get you qualified. It's not easy. One BIG thing we ALL have going against us (according to their stupid system) is our age!! According to how it works, we can perform sedantary work, therefore, we're not disabled. What "you" need to do is show that you Meet or Equal one of their Blue book listings. It's public record and I can help you. Don't give up and don't think of your adjudicator as your enemy. Many times they are fighting SO hard to get you qualified. I know I did. I cried over many clients I couldn't qualify that I felt were disabled and would argue with my boss over. So, don't give up!! Quote Link to comment Share on other sites More sharing options...
purplefocus Posted January 10, 2005 Report Share Posted January 10, 2005 Julie, Just don't give up. The SSDI is a very hard road to travel but you can handle all the obstacles that are thrown at you. I went thru it just like a lot of others. I also had to see their doctor. It does seem like they are there to go against you but most of them end up seeing that you do have a real problem. Good luck and stay positive. Paige Quote Link to comment Share on other sites More sharing options...
DawnA Posted January 10, 2005 Report Share Posted January 10, 2005 Hi Julie, The Dr you are going to see may be on your side too. Mine seemed to be. I have a copy of his note and he recommended that I get SSDI. I do not think you need a lawyer at this point. At least wait until you are denied. But the one problem I ran in to was that they did not consider me disabled until the date I had my appointment with DR Heffez. I had been disabled a year and half before that. I did not want to fight this and took what I could get. I was sooo happy to not have been denied my first time. As far as the neck brace goes...if you only have to wear it three hours a day...maybe you should not wear it, but bring it to the appointment. I would be concerned about the neck brace seeming factitious and first impressions are lasting. That is just my thought. Good luck! Make sure you get a copy of the Drs report.Dawn A Quote Link to comment Share on other sites More sharing options...
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