Need Ideas---in Regards To Ssdi

[Maxine]

Hi,

Tonight I talked with my Dad, and we were discussing how family members support people who file SSDI or SSI by writing letters on out behalf. I do belong to the Disinissues Group, and have some other links, but I had trouble finding this subject.

He wants to know what he should write. He knows how bad off I am------basically his description was that I will be OK one minute, then I'm like a balloon who that suddenly loses air. We really didn't discuss my pain issues----that's pretty obvious. He and my Mom-and of course my husband are the ones who see me the most when I have these rapid decline spells, or the spells in which I start out with no juice at all in the first place, so I'm not good for much--------------perhaps a fairly decent conversation is all they'll get.

They don't really understand all the complications with the low BP/tachycardia, EDS stuff, but have some understanding of my spine instability issues.

I'm guessing they should probably write what they witness in regards to my limitations. i.e.--> how difficult family gatherings are for me, and that I can's last very long, and always have to leave early. He has seen so much, all the way from the beginning. He was so worried when they couldn't figure out what was worng, and I was in the ER one night.

They had given me a drug for nausea even though I told them I didn't want it because of my bizarre reactions to drugs. I thought I was going crazy right after they gave me the drug, and I kept telling my Dad I want to be admitted to the psyc ward. It was the worst night in my life---I was so scared, and I think I scared my Dad. Feb 5th 2001---------that was the date, and to top things off the weather was crazy that day---going from 65 degrees to 10 in less then 12 hours. I'll spare you on the rest of the details.....

Needless to say, he has witnessed a lot.

I'm really tired and spaced out tonight----and I can't think straight. So if anyone knows of something quick to add---any ideas would be welcome. I never wanted to file SSDI in the first place, but ended up not having a choice. I'm really depressed about the whole thing---and just want my life back the way it was before I crashed.

Anyway-forgive me if my post doesn't sound right------------I'm wiped out......ans i'm not sure how fmaily members should handle it when they want to write SSDI

Maxine

[Donna F]

Sorry u are feeling not too well, as am I today and yesterday, dont know why just sweat at night and feel like i just cant get out of bed. Its aggravating. My advice is that my family wasnt a part of my claim, guess it cant hurt for them just to tell in their own words, but the doctors are the main key to sending the right info. I was turned down the first time, then got it basically from the depression/ anxiety but at that point i didnt care how i got it i needed it and didnt care if they diagnosed me as Sybil,lol HOpe all goes well

Donna

[Sophia3]

There was a letter in Disinissues about this recently but I can't remember what the suggestion was.

I would write a SHORT NOTE to the moderator asking about family writing letters in your behalf when applying. It's so important to word things properly.

Good luck.

[Maxine]

Thanks Sophia and Donna,

I am trying to get support from my doctors already-----and of course my attorney and I are compiling all the medical evidence we can-------it's really pretty obvious I wouldn't be able to hold down a job, but you know how SSDI is. Then you have the functional capacity exam that said I'm able to do both physical and sedentary work, but then later recommended sedentary. the person who did the exam was nice, but not experienced with any of my conditions.

I was not able to complete any of the tasks during the exam, and found it difficult to hold my body up in the little office chair they had me sit in between tasks---and this was a good day. My heart rate never went above 95 during the test, and my BP was never checked. My BP drops very low now, and my heart rate doesn't compensate. I get tachycardia sitting or standing---or even in my sleep, but it's not that high because I'm on beta blockers.

My heart rate just runs high----or so I've been told by the RN who downloads my implantable cardiac loop recorder. I don't know if you remember my posting on all the hoopla with the nurse that stalked my postings on here, but when I called the docs office to let them know the results of the test can not be correct, and that it did not correlate with the Fc report the doc filled out in 2004----this is when I was verbally attacked by the nurse, and told if I can post on this web site---"all day long" then I can work!. Well I have a lap top------this enables me to post in bed now. My husband bought if for me because he knows I get sick from sitting up too long posting on a desk top.

She has no clue what I go through every day just to do the basics---and she has no clue on what I have lost from my illnesses. So apparently at least one person from this Docs office has me pegged as someone trying to sham the SSDI system---and that I'm not as physically limited as I say I am----or what two other doctors are saying. One Doc was so livid that I was even put through this exam in the first place. All I will say is that the idea of this test did not originate from the Doctor, but he did sign the order for it--------------------------------------------

My attorney is aware of this, and said there is other evidence in my file from experienced physicians that will out weigh this incorrect report. I have had further injury to my spine because of this test.

I have been told letters from friends or family can be helpful---especially since they see us more often, and see the day to day struggles we have just trying to do the basic things in life.

For some reason my postings aren't going through in Disisissues. This has been since I have had my lap top. Same thing with WACMA--(world arnold chiari malformation association) group. Both are through e-mail---------frustrating.....................

I am still receiving mail from both groups, however. So I'll check it out Sophia--

Maxine :0)

[dmaejean]

Hi Maxine,

I was denied three times and waiting for a hearing. They told me that it would take a year or more. I was an emergency room nurse when I crashed and can relate to all of your frustration. My sister, who is a nurse practitiioner was my caregiver the first year and she wrote a letter. I also wrote all of my senators and congressmen (I live in MS) and the president of the US, and in less than three months, I was approved. I would be glad to send you a copy of the letters that I wrote is you pm me. Good luck to you.

Donna

[Maxine]

Thank you,

I have also involved my congresswoman, and the state senators. I wrote the president as well.

I was sent to one of the SSDI physicians who wrote that I was perfectly fine to work, and the information on his report was false----he lied throughout the report which resulted in the second denial----now I am at the hearing stage, and should be scheduled for some time this summer. I can say this with absolute confidence---first based on what I feel every day, and second, all the medical evidence from experts in my conditions.

I would love to see what you wrote. I may write again to the senators office since there has been a change after the elections. They were of no help----and I was told they were investigating the slanderous report from the SSDI physician----but I never could get the guy in case work to call me back.

I just feel paranoid now---and for good reason-----nothing like being stalked by a medical professional on a support web site forum--that's just plain creepy.............

Thanks so much for your help---------------------------

Julie :0)

[Donna F]

God I have heard it all stalked on a support site, sounds as if they are stepping above and beyond their duties as a nurse! We are all just reaching out for support cause most docs unfortunately havent given much. But I like u couldnt get approved, and because of the grief when i went in front of the judge with a attorney he sent me to a psychiatristand or therapist, and even though i have some depression, etc, i also had more other prob. but i do know because a good friend of mine is way up there with the SS office, and she told me that u can get it alot easier with anxiety and chronic depression, if u cant win any other way u have to do what u have to do. If i were u since u are bein watched on this site, i believe i would change my name on here and kinda to where until all of this ss business is over, u can converse but without them knowing exactly who u are, they sound like they are angry because they have to work and so would use it against u bein on here, i would def change my info. Just a thought

Donna F

[Maxine]

Uggggg---------------------you have no idea the deep state of depression I ended up in because of this whole thing. I never expected that a medcial professional would do that.

More people need to step up to the plate when a person from a medical office is abusive. I filed a formal complaint. However, because of this I am handled by the nurse management when ever I call that office----(as if I was the one that did something wrong---when In reality I was the one who was verbally attacked, and stalked on a support site). The nurse got a slap on the wrist, and I get to be watched as if I'm some kind of trouble maker,or someone who is lying about her disability.

The nurse who is in charge of the nurses in that dept. actually got snotty with me and said, "the doctor will not change the results of the FC report". That was never a thought on my mind, my only perpose for calling that office was to let the doctor know it couldn't be right, and that it didn't correlate with his FC report from 2004 that said I can't work. It was for the Docs benefit, as the SSDI office will want to know why the reports don't correlate, especially since I am worse off now then I was in 2004 when the original report was filled out.

The rehab office ran the FC test, and they did it incorrectly, as they should have never had me do those physical tasks in the first place according to my EDS specialist-----considering EDS and spine instability is a bad combination. One must be very careful with body mechanics, but I wanted to be complient, and I did the test anyway. I'm not supposed to lift more then 2 pounds----I shouldn't even lift my 9 pound dog.

I asked the NP to have the doctor update the FC report from 2004, and this is when the FC exam was ordered in July 2006. If this NP had paid attention to my medical file---------seeing CERVICAL/CRANIAL INSTABILITY would be a clue that this type of exam could cause further injury to my spine.

It is pretty sad that one has to have their SSDI approval based on mental illness---------------perhaps SSDI should be sued----after all, they are the ones that make people get to that point in the first place. Since I was stalked and treated so poorly----I have not been the same, and now I have terrible anxiety when I enter a medical facility---especially the facility this nurse works for. I have never felt so betrayed and wounded.

Maxine

[Maxine]

PS--------------I did change my name already on this forum, and all the other fourms I belong to.

They will probably figure out how to do it again somehow. Just let her stalk me again .............................................I wonder if other people have been stalked as well....

Maxine

[Jacquie802]

Can you switch to a different doctor??

[yogini]

Hi Maxine,

I don't know anything about SSDI, if you are using a lawyer, maybe he/she could give you examples of how the letter should be written? It's probably a good idea for your lawyer to at least review whatever your father writes before sending it in.

-Rita

[Maxine]

I got through to the disinissues web site and they should be able to give me some ideas.

I can't switch to a different doctor---his office is close to my home---

Maxine :0)

[morgan617]

I would think, if nothing else, your profound depression and anxiety issues would get you approved maxine...Has your therapist gotten involved in this at all?

Major depression is a criteria for ssdi approval, and Lord knows, most of us have that! (although, for some reason way too many people think we ENJOY feeling completely crummy )

Anyway, just a thought......good luck sweetie! The big thing is just not to give up, it's what they hope you will do.....but if you can't work, you don't have much choice......talk about a rock and a hard place...