Just heard from the "Disability People"

[purplefocus]

I receieved a call this morning from one of the workers at the Social Security office that is working on my disability claim. This woman made me so mad!!!!!!!!!!!!!!

She said, oh I see, you get tired easily and faint. Then she continued on with there definintion of what qualifies you for disability. I told her that is was more than what she was saying and that they have all the information, then she said "I see you take Wellbutrin, do you have a mental problem?"

I ask her wouldn't she be depressed if she suddenly had a complete horrible lifestyle change. I ask her if I was being denied she told me she couldn't tell me that on the phone that I would be receiveing some papers in the mail in the next few days and I need to return them to her in 10 days. ARGH, what do you do. My doctor tells me I can't drive or work that it is too dangerous, my boss where I was working wouldn't allow me to stay on, the administrator told me I was a risk to them...................Geeeez...........I need to have something to make me get all this anger out of me. I know some of you all have been approved for disability, how did you get thru it?

Paige

[metoo]

Hello,I am going thru the process right now myself.I just got home from an appt with a disability doctor that SSDI sent me to.What a joke!When I told him my DX was POTS,actually saying the whole thing,he looked at me funny and said"What?" so I told him again.It was very obvious that he knows nothing about it.So I was trying to explain what happens when I stand and this fool asks"So if you get dizzy,lightheaded and feel as if you're going to faint when you stand,what do you do?"I told him I sit down or fall down.So then he says..."So then all day you stand up and sit down over and over?" I just don't think he got it.Then he had me stand up and immedately took my BP and HR.They were 154/107 and 114.He said you're a lil high right now,so I tried to explain that it was that way every time I stand.Oh well,it's just a process I guess.Just wanted to let you know you are not alone in being upset with SSDI right now.Good luck!

[purplefocus]

MeToo,

Thank you for responding. I feel better knowing I am not alone. I really feel foolish sometimes because I feel so good and them wham it hits me. My sister ask me if I was gonna put that on my job application that I might can work one week and not another............she was just trying to make me understand I need to be off right now.

Another thing is alot of people say....."you look good, now what is wrong with you". It is the same thing we all go thru I guess it was just my time to vent. I think I am gonna go and get me a pillow and draw a family of SSDI people on it and attack the pillow. Maybe that will make me feel better.

[Jackie]

Sick as it may be I would have just went along with her about the depression statement (not that I wouldn't be upset of course) but if you can believe this my sister was working as an RN and was diagnosed with MS but her disability was approved based mostly upon her emotional responses during testing, etc. I think. (like I guess they were seeing the depression and tearfulness, etc. - She was on mega industrial strength steroids at the time and her mother-in-law was dying of cancer when she had her examination and the examiner wrote in her report "frankly hysteria comes to mind"). She did get approved for disablity though. My sister was so upset when she saw the report that there was so much more emphasis on her state of mind rather than on her state of physical health (right-sided weakness, focal seizures, burning, tingling, muscle spasms, optical pallor, etc.) Another doctor told my sister not to worry that she has seen people up on roof tops shooting at nothing (much worse than simply being tearful) on much lower doses of steroids than what they were giving to her to slow down the MS and not to worry about the report. I don't get how the system works. Go figure! You have MS but don't be on an antidepressant or anything like that because then the mental thing comes into the picture but this actually usually gets approved faster vs medical it seems. I realize it sounds horrible but if they want to approve it for depression fine....you actually might be more likely to get it sad to say vs. POTS (but don't know for sure). geez I hate the whole medical system myself, doctors, insurance, ignorance, etc. I can't imagine what this process is like for you but hang in there.

As a side note I wanted to add that my brother was injured on his job some years ago (ran over by a forklift). Do you think he got SSDI? No. I'm really going over the line saying this here but do you realize how many drug addicts and alcoholics get SSDI? I think it is absolutely ridiculous myself.

[purplefocus]

Jackie,

The whole system is WACKY. I received a letter from the SSDI yesterday. It was about 10 pages of questions, they range from anywhere about can I do my personal things like bathing to what type of television shows and watch and how long. I am gonna feel it out today and send it back. It's insane but hey maybe I am too, at least they are making me feel that way.

Paige

[Jackie]

Paige: What type of television shows you watch? Give me a break? How in the world is that relevant to anything? (To give them something to think about I'd write court t.v. 24/7 haha!) I'm sure they have a highly paid and educated team to psychoanalyze your t.v viewing preferences! I'm sure it is very telling if you watch soap operas, survival shows, the sci fi channel, medical miracles, history's mysteries, court t.v. and throw in some religious programming just to mix it up a bit! Geez, you're not crazy though and don't let them make you feel that way!

[Sue]

Hi

After filling out all the paper work and telephone interviews they flat out refused me and said my husband makes a sufficient amount of money for our household!! What a bunch of crap. They wouldn't even look into all of the years I worked they just don't care. and then she had the nerve to tell me maybe this was something I would outgrow.

Just one day in our shoes/thats all I ask then you watch how fast we would all be approved...

[metoo]

Sue,Did you go thru the appeals process?My mother in law was just approved but she had to appeal the decesion, get turned down a second time then hire a lawyer and go to court.She said the court was no big deal.Just her,lawyer and the judge was in the courtroom and the judge just asked her a bunch of questions and told her she was approved.The whole process from the time she first applied to getting approved at court took about 1 year.It is my understanding that almost everyone is turned down the first time.But,I personally know 3 people who applied due to mental problems,Bipolar,and all were approved the first time.Melanie

[futurehope]

From the Dininissues website, if I remember correctly, if depression is the issue, they do expect that you will be better in a year and tend to do a continuing disability review sooner since they expect a recovery. IF I ever get SSDI, I DO NOT want it based on a diagnosis of depression since they DO expect you to get better. I would rather have my approval based on my dyautonomia.

On the other hand, I have a friend with bi-polar, and that is another story all together. They seem to get approved quickly. And I assume they do not think that they get better as quickly. I really don't know.

[DawnA]

One of the things I recommend to all of you applying for disability is to send them information on POTS. I sent in Dr Lows article on how POTS is as disabling as CHF and emphysema. Good luck to all of you. I hope you get what you deserve.

Dawn

[metoo]

Dawn,Where did you find the article?Thanks,Melanie

[purplefocus]

Dawn , Please let us know where you got the information.

Everyone else............the questions in the letter was insane, like I said ask about television, and if I read or listened to music and if I did how long and what type, it makes me feel crazy. I received another letter yesterday with them asking me for personal reference, one family, one friend and one coworker that is aware of the problems I have. I will send it all in and just wait. Maybe I should move to another country..............just kidding. Ya all are great.

Paige

[futurehope]

Metoo, Dawna, I think I used the same article and gave it to my lawyer. The link is:

http://www.mayo.edu/proceedings/2002/jun/7706a4.pdf

I hope this works.

[goldicedance]

Great study! I participated in it! I hope this study provides some good evidence as well as validation for how awful POTS can be!

[purplefocus]

I'm gonna mail my "20 page letter with questions" to the SSDI in the morning. Do ya think I should include a copy of the information that futurehope gave a link too. The information was very informative. What do you guys think?

Paige

[Merrill]

Hi -- I would absolutely include the information/article on POTS! What could it hurt? It validates everything you're going through and provides the science to back it up. There are other articles--not about quality of life issues, but about the diagnosis and treatment of POTS--that you can also send (probably available on this Web site or on NDRF.org. If SSDI reads them, all the better.

I wonder if you can document the things you're sending them... (take a picture? Definitely keep your own copy of everything...) so you'll always have that info for your lawyer, if it comes to that. Good luck--I'm sorry you have to go through all this... it requires enormous fortitude on your part, but I can tell you're up to the challenge.

Take care,

merrill

[futurehope]

Purplefocus, It was my lawyer that asked for documentation of POTS since he had never heard of it and (I guess) some social security people may never have heard of it either. I'm guessing that you want to mail the article to the SS people?

It will be interesting to see if my lawyer (or anyone, for that matter), brings up the info in the article at my hearing.

[purplefocus]

"Update on what's going on with the SSDI issue." I received a letter Wednesday from the SSDI explaining to me to call a particular person. Now why this person couldn't call me instead of sending me a letter to call her I don't know. Anyway, I called the next day and she informed me that they had not recieved my 20 page question and answer letter that they had requested. I told her that I had mailed it quite a bit ago. She said she didn't doubt it and that it was probably floating around in an office there somewhere. She said she needed to go over the questions with me. She asked me the majority of the questions that was in that letter. There was several times that she mentioned something to me that she shouldnt have known unless she had previously read my answers. We got finished and she said that was all for now. Then yesterday I received another letter from them. It was another request of the same questions and answers I had already submitted and then reanswered on the phone. I am gonna call her tomorrow and ask what this is about. Just thought I would let you all know what was going on with this.

Paige

[MightyMouse]

Paige, I really think that the SSDI people, and medical insurance companies too, make you jump through all the hoops--in the long run, it probably saves them money because so many people just give up. I hope you don't give up on the process...and like others have said, expect that the first time through you're likely to be declined. It seems to be part of the "game."

I imagine the whole thing is probably pretty infuriating. Be tenacious! Nina

[Guest Julia59]

Wow---"what kind of television shows?"

I'm in the process of trying to get some kind of back disability pay---but I want to go back to work part time only.

I'm going to tell them I watch Gilligan's Island --ALL DAY LONG! LOL

Julie :0)

[morgan617]

i got accepted on my first try, but i don't know what they accepted it on. i have so much wrong with me. but she did tell me on the phone. good luck you guys, i know how frustrating it can be. filling out in triples how long you can sit in minutes and hours, like duh, i really keep track of that stuff. i didn't have to see a physician, but i did have to see a psychiatrist. i was really lucky, he was actually very nice and very supportive. i did tell him i was profoundly depressed about the way my life is turning out, and he said i had every right to be. so it can work out. keep the faith! morgan

[purplefocus]

"New Update on my disability issues."

I recieved a call early this morning from my case worker, she said she was doing a follow up before they could make a ruling. She asked me about the welbutrin I take and why I take it. I explained it to her again and she asked was I depressed and UH!!!! no, I like having my life put completely on hold. I told her yes from this illness, just as I have told her numerous times, she told me before they could make a ruling I would have to see their psych doctor..............Will this ever be over?

Paige

[twobyfour99]

Oh my goodness!

I am reading all of this and am in utter shock!! I have been considering applying for disability and this just scares me. Why are people so harsh?

I, myself, am on welbutrin and I can't believe they don't expect you to be a little depressed dealing with something such as this. I am 23 years old and live like an elderly person!! What do they expect???

Does a letter from your dr. help at all? How do you take the first steps in applying for disability?

How much do they consider enough to live off of? The bare minimum?

Craziness!!

Frances

[MightyMouse]

Paige, consider getting a copy of the Dr. Grubb and Karas article on the use of SSRI's and Dysautomia... I dont' have a copy of it... Michelle, do you have that as PDF? I know that Kulwer online has it, but they charge you 25$ to download it.

Nina

[purplefocus]

"New Update" if you are interested. I received a letter yesterday that the SSDI made me an appointment with one of our local physciatrics doctors. In the letter it just stated they needed more medical information and their determination team decided to send me to this doctor. I hope they understand I wasn't crazy but dealing with all this now I am getting there . Actually I know why the reason they are sending me is probably because of the Wellbutrin they are aware that I take. My appt. is on the 10th of July which is a Sat. I thought that was weird but then I kept reading and the letter stated that my appt. might be on a Sat. I will go because if I don't it says they will make a ruling now on what they have. This is getting so crazy for me. I have been toying with the idea of going back to work but then I have bad days and realize that it isn't really feasible. Ugh............I need this to be over.

Paige