I am sitting here in tears trying to fill this "book" of forms out. I am so overwhelmed and can't seem to put into words what I need to explain. What do I put, how do I word it, what do I not need to put... ugh. They ask the same questions 4 or 5 different ways, as if your answer is going to change.
For example; They ask "what are your hobbies and interests"? (reading, watching tv, sewing, playing sports)
I no longer have hobbies and the only interest I have is waking up feeling better and being able to spend quality time with my son (21) and being there for him. Sadly, he's there for me more than I am for him.
The next one asks " how frequently you do these things"? and then, " describe any changes in these activities since the illness, condition or injury began"?
HAve any of you had to fill these out? I am just so confused, do I give short answeres as it seems thats what they want or do I elaborate and give explanations and include my many symptoms in them?
My attorney told me to fill them out, isn't this something that he should assist me with?
Any help or advice would be immensely appreciated. I'm answering them all honestly and rereading my answers brings me to tears realizing how much my life is not a life but merely an existence. How can a normal person read this stuff and not think we are out of our minds. I'd like to think I would be sympathetic to someone suffering as we do, but wow, if I did not have first had experience with this I might find it hard to believe.
I read some answers to a friend who accepts this disease as her mother had it and she said "Laurie I've watched you from the beginning and you are not the same person you were even a year ago, I see your pain and your struggle". Nice to get the validation but also feel that this should not be my reality at 43. I should be strong enough to overcome it.
Great...crying again. I feel so useless and lost. I don't want to live like this anymore. I lost my job due to my conditions and now have no insurance, which means many of my meds have been cut out. I'm only taking ambien, xanax, flexeril, and when I can afford it, percocet. Off the cymbalta and the morphine, tried the fentanyl patch but that too was very expensive.
I'm sorry for the rant, I'm just at the end of my rope with all of this. They want to know how often I shower or clean my house...can't I just invite them over? They'll quickly get their answer then!
Thanks for listening, I tried to get help from my mom over the phone and she just kept making jokes about the questions, needless to say I was not in a joking mood. I'm tired, cranky and just ready to throw in the towel.
I'm so sorry you're having such a tough time now - not only with the pain and other symptoms, but also with having to deal with all that Social Security "sfuff".
It's been several years, but yes, I do remember that book of paperwork that I had to fill out and some of the questions definitely make you take a double look! It's like HOW COULD THEY BE ASKING ME THAT!! I agree, it's so hard to put into written words (and quite often verbal words) just how much this horrible condition has changed your life.
When I had the paperwork to fill out, I did it on my own, but that was only because I didn't have an attorney at that time. I can somewhat understand why your attorney wants YOU to fill them out - because it is YOU that knows how you feel and how your symptoms affect your everyday life the most. It would be nice, though, if your attorney would explain what these papers are looking for and how the best way to get across to them just how much fibro has affected your life and how it has made you stop **** things you enjoy.
I gues the best way to answer the questions is, of course, with honesty - if there are still some hobbies that you like to do, such as reading - put that down - but also put down (if it applies) that although you still enjoy reading and do it when you can, because of the pain, brain fog, fatigue, etc., you find it difficult to even enjoy a book because you have to constantly re-read what you've read and can't sit in any one position too long - so you're constantly being interrupted by your symptoms.
Definitely go into as much detail as you can about how this condition has changed your life andhow it has affected your activities. Let them know that you no longer can make plans ahead with family or friends because you don't know from one day to the next (and sometimes from one minute to the next) how you're going to be feeling and whether you'll even be able to get out of bed that day. Let them know that you have already lost your employment due to you inability to perform your duties due to fibro. Explain to them how much else you have lost due to this.
DEFINITELY let them know just how much it has affected your Activities of Daily Life (showering, cleaning, washing dishes, getting dressed). If there are times when you aren't able to shower for 2-3 days - TELL THEM! If there are more often than not a pile of dirty dishes in your sink simply because you don't feel well enough to get them washed - TELL THEM. If you can write your name in the dust on your coffee table - TELL THEM. By the way =- I quite often can do that! LOL
Basically, stress, stress and stress some more just how much this has affected your life and how YOU have had to change to accomodate IT.
I don't know for sure - this may be something you can ask your attorney about - but it might possibly help (or at least add additional information that you might not be able to) - if your friend or friends, family members, etc., would write letters on your behalf also telling Social Security how THEY have seen how this illness has affected and changed you. Also, if you can maybe get a letter from your doctor also about that and what limitations you have, that may also help.
The more information you can give SS, the better off you're going to be.
As far as your medication goes - again, I'm sorry you've lost your insurance. Have you checked into any patient assistance programs with the manufacturers of your medications? Many of them have them available. You simply need to find out who manufacturers the medications you're on (or were taking) - this would be shown on the presription bottle or box - and then give them a call - phone numbers would be on their website and they may also have a section marked for patient assitance where you might be able to apply online. When I was on the Duragesic patches, I was on the patient assistance program for them and I got them for free through that. At that time I did not have any prescriptioin coverage (it was before the Medicare prescription coverage started), so if I had not been able to get that, I woul dnot have been able to afford the patches.
Also check with your local social services - you may qualify for some state funded assistance at least until you get your determination from Social SEcurity.
As I'm sure you already know - the Social Security process is not easy, not fun and definitely not fast!! I'm glad you do have any attorney and hope he/she is able to give you some further insight as to wht to expect.
I'd also be happy to TRY and answer any more questions you have - as I said, it's been many years since I had to do all this, so things may have changed some and I probably forget a good bit of it, but I'll try to help as much as I can.
Thank you so much for the great advice! It took me two days and lots of tears to finally complete the paperwork. I went to my attorneys office and his assistant helped me to understand better what I was confused about.
It was so depressing after I was done. Sure is a reality check. I mean, I know I feel horrible nearly all the time, but when it's down on paper, WOW! Made me wonder why I continuing to try and push through this if it won't get any better. I did have to laugh when I thought about the person who has to read all of that. They'll probably think it best to take me out back and shoot me LOL.
They sent my mom the same forms to fill out about me. Hopefully she gets them done soon so I can get that denial letter and move forward ;) I guess now it is a hurry up and wait scenario. Frustrating to say the least.
It was embarrassing to admit, but yes, there are many days I too can write my name in the dust. Showers have become a luxury as I no longer have the energy for the daily shower. My hair gets styled MAYBE once a month, I have resorted to pony tails and baseball caps!
Again, I can't thank you enough. It helped to have that encouragement from you. I will try to keep an update going here so that maybe others can benefit from my experience as it unfolds with SSDI.
Sounds like you have your paperwork for SS filled out by now, but now you need to get your prescriptions. Gemini girl, the last poster was correct in advising you to get help through the drug manufacturers. Just go on-line and punch in...help with prescription drugs, or free meds, anything like that and you will see numerous sites that can get you free meds. I guarantee it, I was in the same spot, waiting for SSD to come through. I found help for all of them, including Cymbalta. Some sites will ask you for a small processing fee, and that is ok, considering what these drugs would cost you, otherwise. There are many people going through what you are going through; although it might be hard for you to realize this now. Looking at some of the drugs you were taking, morphine, percocet, etc; Did you happen to realize you are going through withdrawal, if you suddenly stopped taking these? This could attribute to your crying, and depression, you are displaying while writing your post. Please get to a pain management doctor to sort out these meds for you, because they are really playing with your emotions. Yes, you are going to have to borrow the money from someone to see a doctor, but when I was in the same position, I was given a referral through my county, for free doctor visits, also. It does take alot of work and time on your part, but these resources are there for you. Call your county social service agency, to see if they can help you with obtaining the free help that is out there...good luck....
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