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Kibbles
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 10/18/2008 6:53 AM (GMT -7)   
Good morning All,
I know this isn't a new topic, but I couldn't find a thread relating. I applied for SSDI a month or so ago, and just got papers to fill out about what I do from the time I get up, to the time I go to bed. I filled out what I could then my hands gave up. Holding a pen and writting is one of the hardest things for me.This morning I'm typing with 2 fingers. My question is, how can you explain the pain of RA and Fibro? Yes I go outside, walk, wash dishes, do laundry, and cook, but sometimes its easy and sometimes I cant move and spend the day in bed. This paper work is intimidating. I have a call in to my case worker, cause I can't write anymore. Why do they make this so hard for us? It seems impossible to explain how I actually do things, but not in a conventional way. Does that make sence? Yes I walk to check the mail, but it's a long hard painful walk sometimes. Yes I cook, but I can't mush a meatloaf together because the cold meat kills my hands. Can't lift pans, or stir any heavy mixes. Using a knife is almost imposible somedays. What do I say to this SSDI people?? If anyone can help me here with some insite to this process, I'd appreciate it.Thank you
Count your Blessings, Joy
 
 RA, Fibro Myalgia :  Meds: MTX ,Remicade,
Vitamin D, Centrim Silver, Folic Acid, 


QTKaren
Veteran Member


Date Joined Apr 2008
Total Posts : 605
   Posted 10/18/2008 7:19 AM (GMT -7)   
I've been through what your going through myself. Different diseases and afflictions but the same kinda day to day can do some things can't do others. What they want to see in those papers is that you can barely help prepare a meal and if you live with anyone make sure to say that they have to do almost all of the cooking and cleaning and shopping. Is this a lie? you betcha but I have seen too many ppl turned down because the state has thought thier abilities were enough to get them a job. I told them I can't stand for more then a few minutes without being in pain and can't sit for more than a few minutes without being in pain and having to constantly change position or lay down to rest. Everything you feel, times that by 10. Tell them you use a cane or walker part time. If they think for any reason that you mignt be able to sit at a desk for any decent amount of time then they figure your trainable in another position with a phone job. They prefer being able to train you then to pay you. It doesnt matter that even if they trained you chances are you would have to quit that job later they want to know about right now and you have to make a pretty miserable picture of your life.

So when they want to know about say,doing the dishes,tell them you tried and dropped a plate or you couldnt stand at the sink long enough and had to ask for help. Tell them that there are even times that you need help with personal tasks like bathing. I know it sucks that you cannot be totally honest with these ppl but take it from me,someone who was turned down twice they don't want to know the "real" truth. And yes I even fudged it with the phych appointment they sent me to. Made sure to be out of sorts and soooooooo depressed that it made it hard to get through a day. And they will most likely send you to medical exams by more then one doctor and lay it on thick there too. Have trouble bending over even more then you normally do same for lifting and many other things. show them how much pain you are in even if your having a good day. You do not want to try your best to complete these tasks.

I'm sorry if this sounded harsh but ya know what? I got tired of trying to honestly explain my pain and my life to them. And as much as I laid it on thick during the physical tests one of the things that got me the ssdi was the phych exam for depression. In the results for the physical exams they said they thought they could still find a way to employ me!!!! It's crazy stuff I know. And at first I felt somewhat guilty for what I had to do but not in the end. It's all a great big game they play so be a player if you want any chance at winning this. That's just my personal experience and that of some I know of. Good Luck.

Soft Hug's,
Karen
Karen
 
Mom of one gramma to 4 lover to One
 
Fibromyalgia,IBS,Stroke x2,endometriosis,Diabetes type 2,neuropathic pain,nerve damage due to tailbone removel,nerve damage due to fractured back,deppresion,high blood pressure,severe nausea,atrophy,chronic pain,nerve damage due to botched bladder surgery,torn hip joint,hypoglycymic
 
Norco(double strength vicodin) 80 to 100 mg @ day
Ms Contin(morphine) 45 mg @ day,Lyrica 600mg @ day
 
 
 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 10/18/2008 1:45 PM (GMT -7)   
Kibbles, I definitely would NOT suggest that you lie at all.  I have disability and I received it on the first try.  I didn't even need a lawyer.  You see, I was totally honest with everything I told them and also with the doctors they sent me to.  I do have more than just fibromyalgia though. 
 
They see plenty of these forms and, believe me, they see plenty of lies and can usually spot them a mile away.  If you are honest about your health and your day-to-day functioning it will "fit" with what they know fibromites suffer with.  You know what I mean?  Besides, you have to live with yourself after mailing that form in.  I know I wouldn't be able to sleep if I was falsifying any government documents and my conscience would make me even more ill.
 
I really can't remember the forms now.  I remember filling it out but not exactly what it asks.  If it is a yes or no question, answer honestly.  If it asks for pain levels when doing tasks, give the average level.  I did tell them about the pain and lack of stamina because of fatigue.  Remember, your doctors all have to send their reports in AND you have to see social security doctors too.  If you are not honest, red flags will go up.  So, the best advice I can give is be truthful. 
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Kibbles
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 10/18/2008 6:34 PM (GMT -7)   
Thanks to both of you! No, I can't be anything but honest, but I was mainly wanting to know how one explains it all.They kinda just ask do you walk? do you cook and what do you cook> Stuff like that. I don't pan on lying at all, but I need to explain it correctly ya know?
You know what it feels like to just start crying cause your achey and frustrated? Not so much screaming pain just the constant nagging crap that makes ya wanna just quit? How do you expalin that, so that others don't just think your whinning and having a pitty party?
I have a wonderful case worker, but when your filling out all this stuff the last thing you want to do is answer in the wrong way.
Count your Blessings, Joy
 
 RA, Fibro Myalgia :  Meds: MTX ,Remicade,
Vitamin D, Centrim Silver, Folic Acid, 


Carnissa
Regular Member


Date Joined Jun 2008
Total Posts : 289
   Posted 10/18/2008 7:53 PM (GMT -7)   
I find that that spoon theory is best...way to describe it.. http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

people tend to understand what a day is like for me when i tell them this

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 10/19/2008 9:47 AM (GMT -7)   
Kibbles, if it isn't a yes or no answer you can tell them the difficulty that you have in doing simple things...just like you told us in your first post on this thread.  I wish I could remember the stupid form.  If I could, I could be more help.  If I recall correctly, I told them that I could do some cleaning but not heavy things and I had to take many breaks while doing a task.  I also told them the things my kids helped me with.  I explained that my stamina was very poor.  I would tire easily so I could only do a little each day.  That is the absolute truth and that's how I am today, too.  I only do physical work for an hour..or two hours at the most.  If I push it, I'm in too much pain and then can't get anything done for days after. 
 
When it comes to cooking, let them know it's difficult to lift the pans...especially if there is food in them.  Even now, for me, I have to use two hands and hold the pots by the body of the pot, using pot holders, and not by the handle.  If I try to use the single handle with a full pot, the leverage makes it too heavy for me.  My hands, arms, and wrists are not strong enough to do that, plus the pain in trying to grip the handle is really bad.  (Dutch ovens are easier for me to handle.)  You can do simple cooking chores like making sandwiches, etc. without much pain.  As far as using a knife, I use an electric knife and that helps me a lot so the knife example wouldn't "wash" with them. 
 
But zero in on the physical problems you have with everyday life and the pain that it causes you.  Let them know the lack of sleep because of the pain in just lying down.  I know I walk with a cane when I get up from lying down because my legs ache and almost feel whobbly.  If this is you, then let them know that. 
 
I hope this helps you a little.  I know that that form was the most difficult part of the process for me, too.  Do not put on a brave front.  We all get that "I can do it" when actually you can do it but with great difficulty.  Don't embellish things...just tell it like it is for you.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


VaVoa
New Member


Date Joined Oct 2008
Total Posts : 17
   Posted 10/19/2008 11:46 AM (GMT -7)   
Hi Kibbles.  I agree with Sherrie.  I'm also in the process of filling out my SSI paperwork and even on the straight yes/no answers I have a remark.  (I wrote "see remark on reverse side" for that question and then gave my explanation on the other side where there was more room to write.)  It has litterally taken me a couple of weeks to fill out these forms because I'm having the same problems as you.  Either I can't concentrate long enough, can't sit long enough, or my hand hurts from writing.  So, I'm taking my time.  I called the representative at SSI and explained to her that I am filling out the forms, but it will take me a little while. (and explained why) She was fine with that and was glad that I'm keeping her informed.  On mine, the last page is simply for 'remarks' .... so being that I have a hard time collecting my thoughts, I decided to type out my remarks on a seperate sheet of paper, (on their form I wrote "see typed sheet") which makes it easier for me to organize (cut & paste where needed).  I ended up typing 2 pages worth, briefly explaining what my life was like pre-fibro and what it's like now.  If they don't get the picture from that, then they never will!  Good luck to you hon, just keep them posted if it's going to take a little longer than usual to fill out your paperwork.

QTKaren
Veteran Member


Date Joined Apr 2008
Total Posts : 605
   Posted 10/19/2008 11:21 PM (GMT -7)   
Maybe in some states its easier to be accepted but in Washington States its hard core. I tried twice doing to the totally honest way and got nowhere so I still stand by what I feel on the subject. I did tell them honestly how some of my days were and it was enough to not be able to hold a job anymore but when I went back I told them that things had changed and now it was everyday. They did not want to hear that I could function on any days and forget about the days where I over did it and paid later. As long as they thought I could sit at a desk somehwere for more then a few minutes they figured at one point that I could work from home making over 800 dollars a month and I asked them so who do I call about this and where is this so called job? They didnt know of any they just "figured" I could do that well. I'm just glad its over.
Karen
 
Mom of one gramma to 4 lover to One
 
Fibromyalgia,IBS,Stroke x2,endometriosis,Diabetes type 2,neuropathic pain,nerve damage due to tailbone removel,nerve damage due to fractured back,deppresion,high blood pressure,severe nausea,atrophy,chronic pain,nerve damage due to botched bladder surgery,torn hip joint,hypoglycymic
 
Norco(double strength vicodin) 80 to 100 mg @ day
Ms Contin(morphine) 45 mg @ day,Lyrica 600mg @ day
 
 
 


telula68
Regular Member


Date Joined Sep 2008
Total Posts : 56
   Posted 10/20/2008 7:58 AM (GMT -7)   
I agree with Karen. I tried to be honest and told the truth but they will not listen. They don't care. If someone gets ssdi first time around that is very rare. They run you through a meat grinder and then in my case, THEY lie.

I had a terrible time with a face to face re-certification. I was already on ssdi and I had to go for a review. I was asked to list all my meds but when the review came back it stated I was not ON any meds! I had to tell them how hard everything was and I was being honest when I said I could not function and was in constant pain and can't do any of the things I used to do. It wasn't enough for them or they completely ignored the papers. I had years and years worth of records that they did not even look through...A doctor who I never met stated that I was fine!!!! Never even heard his name before and there was a paper in my file with a stamp on it of his name and "reviewed" and I was found to be totally 100% fine in this 5 inch thick folder of medical records???? so I was cured somehow I guess.

I was asked how much I could lift. I told the woman "it depends on how heavy it is and if it is up or down. Like if its on a bottom shelf I can't lift it if its above me or at eye level I can pull it down easier. She said "what about shopping...can you lift a bag of sugar?" I said "again how heavy is it and where is it?" I got the papers back. "client states she can lift 10 pounds of sugar" I'm not kidding you! I still have the papers. They were so full of lies and accusations It screamed "this person is a lazy slob who does not want to work!!!!" I was so upset and offended I fought it but it took everything out of me and was pretty much a full time job for a few months.

They don't want to know real life situations, details or anything else for that matter.

I am going through this again now. They are saying they paid me too much and now I have to do reams of stressful paperwork to prove that I did not receive any extra money and they did not ask me for any paperwork for three years so who's job is it to figure out? Mine! I get to go to the paycheck lady and ask her to figure it out for me...nice...why don't I just wear a sign that says "I'm on disability" Cuz ya know I don't LOOK sick!!!! It really does wonders for the anxiety and depression I DON'T have..

They don't know what its like and they don't care. If you know you can't live your life the way it is then do what you have to do to get help. They lie. They force us to expand the truth. There are days you probably can't get on your feet so remember those days and don't back down. Its not like anyone does this for fun. who would want to be AWARDED with a disability???? They make it sound like you've won some contest.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 10/20/2008 8:21 AM (GMT -7)   
That's the problem, Telula.  There ARE people that "want to be awarded with disability"...plenty of them!  I have seen many reports over the years where people lied about their disability and were caught, through hidden cameras, doing things they claimed they couldn't do.  They were in big trouble.  There are some that are out there for any "handout" so the system has gotten paranoid.   
 
I know all my doctors agreed that I should be on disability.  Actually, they are the ones that suggested it after my husband passed on.  If your doctors agree, that seems to be half the battle.  It's a shame that so many have problems getting disability when they really need it but I still wouldn't lie about anything I said or on any forms.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


telula68
Regular Member


Date Joined Sep 2008
Total Posts : 56
   Posted 10/20/2008 8:55 AM (GMT -7)   
Here's my problem with that though...I can try to do things..but I will pay dearly for days after. If someone were to see me in my little garden and report me does that make me a liar? I know I am hurting, I am getting through on lortab and trying to do something I enjoy. I know I will be sorry. So I make the decision to deal with it later. Otherwise I should just sit on the couch and do nothing?

They don't want to know if you are laid up for a week after going for a walk in the woods to clear your mind, They just want to know that you can walk. they don't care that you can't walk for three days because you dropped your groceries and had to pick them all up and pulled something, they just want to know if you can go shopping. What if these everyday things happen and you get CAUGHT doing them?

Of course I've seen the news videos of the stripper whirling around a pole who was recently put on disability. That's different I think. I don't like to lie, I hate it actually. I felt trapped and I knew I could not live that way anymore. I never outright LIED about anything because I didn't have to. But I DID have to be convincing about it or I would have ended up homeless!

QTKaren
Veteran Member


Date Joined Apr 2008
Total Posts : 605
   Posted 10/20/2008 10:06 AM (GMT -7)   
Sherrine,I'm not talking about the ppl that you see on a hidden camera show having a good ole time after cheating the state on disability.  Ppl like that have had doctors falsify records for them many times.  These are ppl that are carrying on full time jobs under the counter and collecting ssdi.  Telula and I are talking about ppl like us who have jumped through the states hoops and dotted all the i's and crossed all the t's and still got craped on.  Telula I am glad you brought up the paperwork,omggggggggggggg after I had gone for my 1st medical exams done by several doctors at one time and the paperwork came back there were all kinds of lies in there to the point that I had to take a highlighter pen and mark anything that wasnt true.  On the lifting thing they asked me how much I could lift and then I showed them how much I could lift.  It got to the point where they asked if I could lift 50 pounds and I was shocked!!!  I had just shown them I couldnt lift over 5 without back pain and then they want me to attempt 50.  I said there is no way I can do that without seriously hurting myself but later in the papers they had said that patient can lift 50 pounds on a reg basis which to them had me looking like I could do warehouse work no problem.  There were other areas where they said patient had perfomed task well when I didnt do it at all or had to stop due to pain.  And it is up to me to prove otherwise after these reports come out saying there was more then one doctor that saw me do thisd or that? not even.   Sure when you have worked your whole life ppl have stated they wanted to be awarded these monies they put into it and deserved it.  But are not the women or men that were stay at home spouses taking care of the whole family and backing he hubby on his job deserving too?  I did not pay into the system enough years to even get what many got today but I did spend years working my ass off for my family and I do deserve benifits too now that I am on my own so to speak since Jay doesnt make enough money for us to survive and I cant work.  I played by all the true rules of the game and then played by thiers and I dont feel guilty at all.  I am disabled I cant hold even a part time job but I am sure that if I was like many others being filmed doing things for family that is causing me pain then I would be "caught" but the cameras arent there when your curled up in a ball crying oh no they dont want any part of that I just gave advice based on my experiences in the system.
Karen
 
Mom of one gramma to 4 lover to One
 
Fibromyalgia,IBS,Stroke x2,endometriosis,Diabetes type 2,neuropathic pain,nerve damage due to tailbone removel,nerve damage due to fractured back,deppresion,high blood pressure,severe nausea,atrophy,chronic pain,nerve damage due to botched bladder surgery,torn hip joint,hypoglycymic
 
Norco(double strength vicodin) 80 to 100 mg @ day
Ms Contin(morphine) 45 mg @ day,Lyrica 600mg @ day
 
 
 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 10/20/2008 10:59 AM (GMT -7)   
I understand both of your viewpoints.  I just gave my best advice.  Everyone has different opinions and we pick the ones we think are best from the suggestions given.  That's how the forums work.   
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


QTKaren
Veteran Member


Date Joined Apr 2008
Total Posts : 605
   Posted 10/20/2008 10:49 PM (GMT -7)   
Thats true and I wish everyone the best no matter what route they take. Today has been one of those days I dont look forward to. Everything hurting and dont know why just a day of wanderingfrom one corner of the house to the next feeling out of sorts and restless but hurt too much to do anything. Tomorrow os therapy day for my lil grankid so I will see all of the kids and just hope and can get myself together enough so as no to disapoint them. Got chores to run for mom tomorrrow so better some rest.
Karen
 
Mom of one gramma to 4 lover to One
 
Fibromyalgia,IBS,Stroke x2,endometriosis,Diabetes type 2,neuropathic pain,nerve damage due to tailbone removel,nerve damage due to fractured back,deppresion,high blood pressure,severe nausea,atrophy,chronic pain,nerve damage due to botched bladder surgery,torn hip joint,hypoglycymic
 
Norco(double strength vicodin) 80 to 100 mg @ day
Ms Contin(morphine) 45 mg @ day,Lyrica 600mg @ day
 
 
 


GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 10/21/2008 7:48 AM (GMT -7)   

Hi Kibbles-

I am only a step ahead of you at this point applying for SSDI. It is SO overwhelming! I applied and just got turned down and now I am appealing mine. It's the second phase. I too had a hard time trying to explain everything to them and your story sounds identical to mine.

I am fortunate enough to have a service through the county here in MN that they help you fill out alot of the paperwork and they even go online and get it to SSDI for you. The paperwork about my daily living I had to fill out and I was "nuts" by the time I was done. smhair I felt like pulling my hair out, and I rarely get like that!! I did it slowly over "days" because I can't write long without pain in my fingers/hands too.

I wish us both luck with this dreaded process and know I'm going through the same thing as you.

GamJill 


 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
 
Zoloft, Tylenol 4000 mg., Darvocet  


Kibbles
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 10/23/2008 7:16 AM (GMT -7)   
Thank you to all of you, I can tell it's a hard row for all. I am pluggin away at my paperwork and called the guy whos name is printed on the front of the paperwork. He said "no problem" if I need an extension for mailing the forms back.
I constantly see commercials for SSDI lawyers. If one gets turned down the first time, do you just get a lawyer? Or do you let SS drag it out for months or years? This is the craziest stuff ever.
I understand that they have to weed out the phoneys, but am surprized that they can't look at all of the Dr appointments and what you were seen for, and know your being honest. I really loved the comment one of you made that SS makes it seem like an "award"
I would much rather be make $20 something an hour rather than $1000 something a month.
I'm in my mid 50's now and have always done intricate hand work, and computer work in the med/dental field. I can't do it anymore. Wish I could. Soft hugs for all
Count your Blessings, Joy
 
 RA, Fibro Myalgia :  Meds: MTX ,Remicade,
Vitamin D, Centrim Silver, Folic Acid, 


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 10/23/2008 4:21 PM (GMT -7)   
Kibbles,
 
I don't remember if we've "met," so just in case we haven't, "hi."  LOL  Anyway, I am right at the beginning of this process.  I've been told by at least 20 people that getting SSDI on the first try is next to impossible.  In CA, they have a state disability (only a few other states have this).  Now that I'm in SC, I have to apply for Medicaid and SSDI (all at the advice of my new doctor). 
 
In my opinion (cause we all have them), we all need to do what is best for us-individually.  I get the paperwork tomorrow, so I can't tell you how I am gonna answer the questions.  However, I do see QTKaren's point.  She's not lying and skipping off to work in her brand new car while collecting a whopping extra $800 a month.  Personally, I have used every last penny of my savings (401K, IRA) to try to live.  How can I be expected to live even a meager existence when I have no financial future?  Luckily, for now, I do have my parent's help, but I cannot and will not continue to take away their retirement they have worked so hard to build.
 
Anyway, sorry to go off on a rant.  Like I said, in my opinion, you should do what you think is best for you.  I wish all of us luck!
 
BTW, QTK, Amen when you asked, "where are the undercover cameras when you're curled up in a ball in pain?" mad
FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Chantix to try to quit smoking (started 08/20/08)
 
"I'll take the Chivas instead"
-Kelly Clarkson

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