Another Thread About Applying For Disability

[Mito Momma]

Hey all! I know there are multiple threads about applying and/or getting social security disability on here, but here's another one. I did a search for 'disability' and read many of those threads.

Here's the deal. I am an ER nurse. (I know, you're surprised that I'm a nurse.) I can't work due to my dysautonomia. I am also having a muscle biopsy in a couple of weeks to check for mitochondrial disease.

I started the process of applying for SSDI about a month ago by filing online. I was frustrated with our financial situation when I decided to apply. I have had recommendations to wait until after I get the results of my muscle biopsy to file. However, it's too late now. I went to my PCP the other day to ask her to write a letter of support for me. I got an example from the youdontlooksick.com message forum. BUT... she won't do it. Even though she's seen me through everything that's gone on since I started getting sick. She said that since she doesn't know anything about dysautonomia/pots, she can't support my need for ssdi. She said I need to go to a Physiatrist (physical medicine and rehab). She referred me to one. A new doc who doesn't know anything about me. A doctor who will do a physical and may not find a need for me to be on disability based on what he sees during the short time I'm in his office.

I saw that one of the main things people recommend is supporting documentation from my doctors. I have a cardiologist, but whenever I ask him to do anything he says I need to ask my pcp. Sooooo..... What else do you all recommend? I want to try my hardest to get approved on the first try. I know it probably won't happen, but I'm going to try my damndest!

Thanks,

Robin

[Brye]

ER nurse to ER nurse! I am also unable to work due to my POTS and actually don't know that I will ever be able to work in an ER again. My hand tremors kick in if I just am in a hurry to do something much less stressed about something. I never saw a Phys... doctor. My cardiologist was my main resource. MY pcp was very supportive as well but I don't believe he was critical. I was approved on my 1st try but I'm a frequent fainter as well which I think was key in approval. High risk for syncope I think was key for me. I did have a form a lawyer friend had me submit with my claim that my doctor filled out and it made it clear what my limitations were that made me unable to work. I've mailed that out to several people on the forum and I would be happy to send one your way if you want to check it out. It gave the doctor a chance to estimate the # of hours I could stand/sit/walk/etc. Also he said it was helpful to make it clear the # of days I was likely to miss work / month. Maybe the doctor or your cardiologist would be willing to fill something like that out. It's not really supporting your request it's just providing facts and allowing ssdi dept to make the decision. So stressful!! PM me your address and I can send you the form if you want it. Wish I had better advice! I was so shocked and thankful to be approved the 1st time around and I'm not sure what the reason was. Good luck and hopefully you'll get a surprise approval as well. You never know! I never even saw an autonomic specialist.

Brye

[comfortzone]

Hmm... Well are you off of work on your jobs short term disability plan getting paid that way now? I guess what I'm getting at is -- did you already quit your job -- or are you hanging in there by the seat of your pants having to call in sick cause of this.....&/or currently on a medical leave?

The reason I ask is this.... if you are sick and almost house bound or house bound -- you can apply for social security by phone. You call the lady or guy and explain your situation...... "I am not working at my job now because of an incapacitating chronic physical condition or disorder called POTS" -- or whatever the name of it is that you have. Tell them money is running out and you aren't able to work yet and getting nervous and need help. Ask them if there is anyway you can apply from home. If they say yes you can apply by phone - try it. They will let you know the information they will need - like doctors names, schooling, divorces - all kinds of crazy stuff....but anyway you get it all in order ... Then they will call at an appointed time. All you do is give them the demographic data etc.. that you are asked to give over the phone. They'll ask how many minutes during a shift do you do this or that etc. etc....

Then the cool part is --- they are the ones that gather all your medical records. You don't have to do any bit of it. All you do is endure one lengthy lengthy phone call. Maybe about 3 hours long.

You don't have a physical exam or any such thing.

If you are like most folks you have maybe 5 treating doctors -- and those records can mount up to the hundreds of pages. It's up to social security to figure it all out. Like if what you have is likely to go away -- or if it's looking rather bleak, if the records seem to indicate that you'll be off at least one year due to this - that's great....if it looks like you have 'other illnesses' aside from POTS - they put all that together and figure out if it doesn't look good for great recovery...

Then you simply wait for their verdict.... Doctors are not writing letters for you -- the sheer volume of medical records from the last year or two or more (not sure how far they collect - but let's say a couple years anyway) purely speak on their own.

I don't know if you have EDS too - But the EDNF website has a resources section - if you click on it - and then down on the right look for the 2010 Conference Handouts........ The handouts - click on that - and you'll see there's a presentation by someone from Social Security.... Talks about how they categorize things etc........ it might be helpful to you - don't know though.

So if you really feel like crap - know that social security has been known to just take the ball and run with it on your behalf - that way no doctor stands in the way of 'yes' or 'no' -- by writing or refusing to write an okay.

I'm soon in a similar predicament - having just moved - and having all new doctors who don't know me.... Not sure how to approach this situation as regards disability. Maybe just drive the ten hours and see my old doc? Life gets sooooooooooo crazy. Best wishes!

[DIXZELAND]

ER nurse to ER nurse! I am also unable to work due to my POTS and actually don't know that I will ever be able to work in an ER again. My hand tremors kick in if I just am in a hurry to do something much less stressed about something. I never saw a Phys... doctor. My cardiologist was my main resource. MY pcp was very supportive as well but I don't believe he was critical. I was approved on my 1st try but I'm a frequent fainter as well which I think was key in approval. High risk for syncope I think was key for me. I did have a form a lawyer friend had me submit with my claim that my doctor filled out and it made it clear what my limitations were that made me unable to work. I've mailed that out to several people on the forum and I would be happy to send one your way if you want to check it out. It gave the doctor a chance to estimate the # of hours I could stand/sit/walk/etc. Also he said it was helpful to make it clear the # of days I was likely to miss work / month. Maybe the doctor or your cardiologist would be willing to fill something like that out. It's not really supporting your request it's just providing facts and allowing ssdi dept to make the decision. So stressful!! PM me your address and I can send you the form if you want it. Wish I had better advice! I was so shocked and thankful to be approved the 1st time around and I'm not sure what the reason was. Good luck and hopefully you'll get a surprise approval as well. You never know! I never even saw an autonomic specialist.

Brye

Hi Brye, I would be interested in one of those forms you talk about in your response. Can you email it or send it by US mail? Thank you Brye