Guest guest Posted January 14, 2002 Report Share Posted January 14, 2002 Hi , I have been trying to get ss for 5 years now. I have been waiting for over a year for a hearing. From what my attorney has told me this is normal. I have RA, carpal tunnel, osteoarthritis and assortment of other ailments. I was turned down three times already. I just spoke to my attorney and he tells me ss has to be sure you are disabled. Yet I know someone who has carpal tunnel no RA and got it at her hearing so go figure. It takes a long time. Like you my attorney has told me I will get the ss it is just a matter of when. Hope this helps you understand it can be a very long process. Lynn ---------- > From: /Celine Kossart <kozys@...> > > Subject: [ ] MIA . . . Me! [LONG} > Date: Sunday, January 13, 2002 10:30 PM > > > > Hello all, Hi , Hi a's, > > Got to thinking lately and realized it has been many, many, MANY months > since I posted to the list. Time flies! I'll try to give a quick update > on my condition to bring my friends on this list back up to speed on how > I've been doing. > > As you may remember, I had been diagnosed with RA and ended up in the > hospital with pericarditis. That was around the end of 2000. While in the > hospital they started me on Prednisone, 60 mg. daily, and also on insulin > because I have Type-2 diabetes and the Pred screws up your blood sugar. I > initially had very bad pain and swelling, mostly in my hands and shoulders, > which made just doing every day, simple tasks painful and almost unbearable > at times. I also had some problems, though, in my feet, ankles, elbows and > knees with a fair amount of swelling in my right knee. The knees were > beginning to cause big problems with pain and getting out of a chair and > going up and down stairs and then I was hospitalized for the pericarditis > and started on the Prednisone. > > The Prednisone worked wonders for me, at least compared to how I was, but > as we all know and I learned, you can't stay on it long term because of the > side effects. So I was gradually reducing the dosage and last winter or > spring, I can't remember when now, my rheumy started me on methotrexate. I > had also been taking Celebrex all along, too. I was taking the > methotrexate pills, four 2.5 mg. weekly, along with folic acid at 1 mg. > daily. The rheumy said I was tolerating them well, especially after I told > him I was eating hot peppers, too! He said, " You're stomach's fine " and he > upped my dosage to 6 pills per week. Since then, my dosage has been upped > to 8 pills per week as I continued to decrease the Prednisone. > > Now they told me that the Prednisone had to be decreased slowly, but I had > no idea it would take 13 months to get off of it! I mentioned this to my > GP and he said that was about right. Anyway, I have been completely off > the Prednisone now since December 1. I saw the rheumy last week and he > said I was doing extraordinarily well, much better than he had > expected. He is planning to decrease the methotrexate dose some if I'm > still doing well when he sees me again in four months. > > It has taken a long time but gradually, VERY gradually. I have been in > practically no pain and I have been able to do things I didn't think I > would ever be able to do again. I also have energy to do things around the > house and I am sleeping pretty much normally through the night instead of > falling asleep during the day. This is great but I am a bit concerned > along the lines of Now What? as I recall reading somewhere awhile back > about a person who was on methotrexate and who said that if they didn't > know better they would have thought they were being cured. Than after a > year or two it stopped working and how cruel it was when everything bad > came back. This is what concerns me and I was hoping those in a similar > situation as me could share your experiences with me and the list. > > Now here is something else I would like some feedback on. I have been > unable to work for a year and a half now because of the RA. Someone > suggested I try to get Social Security Disability but I considered that my > " ace in the hole " for someday in the future when I got so bad and nothing > would be of help. In the mean time, my plan was to see how I ended up > feeling and functioning after getting off the Prednisone, which I thought > would only take a few months. Then I could re-asses and get an idea of > what I might be able to do work wise. > > My wife knows this lady whose husband helps people get on Social Security > Disability and after my wife told her how bad I was, said I should call her > husband and he would help me out. I didn't call him at that time, though, > because of the reasons I explained in the last paragraph. A couple months > went by and my wife ran into this lady again who asked why I had never > called her husband. My wife told her how I was waiting to see what I could > do after I got off the Prednisone and that it wasn't like if I was bed > ridden or anything like that. > > The woman told her, " You don't understand. Your husband has a progressive, > incurable disease which is also listed on Social Security's List of > Recognized Impairments. It won't go away and over time will get worse > instead of better. " Then she asked my wife things like, " Can your husband > stand on his feet or stay seated in one place all day? " and " Can he type or > write for eight hours at a time? " " Is he in constant pain and has trouble > doing even the most routine things? " " Can he kneel, crawl, squat, bend, > stoop, at all? " And on and on. The woman then told her that no employer > would hire someone in my condition because they would be unable to > reasonably accommodate all my impairments, etc., and that was why Social > Security Disability existed, to help people in my exact situation. > > When my wife came home and told me all this, we both realized that the > reality was I was disabled and it was time for me to basically retire due > to the disability of RA, and that was that. It was hard to accept at first > because I'm only 48 years old and I thought it would only be a matter of > time before I could go back to work, and now I had to face this new reality > that I may NEVER be able to go back to work. But accept it I eventually > did and so I finally met with her husband. > > He made it all sound so easy and how it was almost custom made for a person > in my situation. Almost like all I had to do was fill out some paperwork > and basically prove I had the RA, and after jumping through the > bureaucratic hoops I would be approved - pretty much cut and dried. He > almost made it sound like it was something that was practically owed me. > > In the mean time I joined a list on disability insurance issues and began > reading about all the poor people who had trouble getting disability from > Social Security. At first I felt sorry for them because I had one of the > diseases in the " Listings " and knew I would eventually get approved. Not > like them who had to document and prove every little thing and hire lawyers > to try and help them get it. > > But in the mean time something strange and very unexpected happened -- > Social Security turned down my application for disability! I didn't > understand how that could happen and supposedly neither did this guy who > was helping me get it. > > I kept reading about people having all these tests and all this > documentation in an effort to persuade Social Security that they were > indeed disabled. I began thinking maybe I needed to do more along those > lines myself and so I asked the guy who was helping me, my > " Representative " , as the term is called, what else we needed to do or get > to make the case. Well, we found out that Social Security didn't have the > letters my GP and Rheumy wrote saying I was disabled, couldn't work, on > very strong medication just to function somewhat normally without pain, > etc., when they made their determination. They said that I had some > problems but that I should be able to be a Security guard, based on a > description I gave on what the duties where of the job since I had been a > guard about 15 or so years ago - worst job I ever had, BTW. I didn't > understand this since I had said in my job description that I was on my > feet and walking almost half the day and there was a fair amount of > writing, too. Can't do that now since the dreaded RA struck! > > Anyway,I was beginning to suspect we needed more to get the disability > determination approved, but my representative said I would just be wasting > time and money on unnecessary tests, and that they had access to all my > medical records, etc., the disease was on " The List " , and that all we > needed to send in on the appeal was copies of those doctors letters so they > would have them this time. Then everything would be approved with no problem. > > Well by this time I was beginning to have more doubts about this guy and a > couple weeks ago I got another letter from Social Security denying me > AGAIN. By this time I was beginning to think, and read on the disability > list continually, that I should get a lawyer who specializes in Social > Security disability law to represent me. My representative was all > confused and couldn't figure out why they rejected my application again > . I told him maybe " we " were getting in over our heads at this point and > that maybe I should hire a lawyer who specializes in this sort of thing. I > don't think he liked that. He said he had gotten disability benefits for > well over 200 people, etc. I asked him how another appeal would be > different so that it would cause Social Security to change their mind and > grant me the disability this time. I should say here that at this point, I > have to go in front of a Social Security judge, called an ALJ, and plead my > case now. My representative said that it was enough for the judge to see > me. I asked what is he going to see at this point except for someone who > looks practically normal physically , but claiming to be disabled to the > point where they cannot do ANY kind of work, no matter how menial, in the > national economy. > > You see, from day one he said to fill out all the paperwork in reference to > how my RA was at its worst. The disability list is also saying to put > things in a negative lite rather than a positive. so that if a person gets > worse or has a flare, etc. that will cover it. The problem is, as I said > before, I look and feel almost normal right now so far, so saying any of > those things I put on the initial application would kind of be like lying > because of the progress I've made with treatment. On the other hand, if > and when the disease progresses, and if and when the medication doesn't do > the job anymore, I will possibly be like I was before. (I just thought, > this seems like I'm Cinderella. <g> ) > > So I ended up last week talking to a lawyer who has experience in > representing people who are trying to get Social Security Disability. I > tried to explain all this to her and I don't know if I got through or > not. I wanted to know if the case was even worth pursuing at this > point. About the only thing that still doesn't look or function right, > despite some past physical therapy and my ongoing treatment, is my > hands. They are somewhat swollen with a couple nodules and I am unable to > make a closed fist - my fingers only go about 3/4 of the way normally > despite all my treatment over the past year plus. > > She looked at copies of my forms I filled out for Social Security and my > doctors reports and asked me if I was still that bad and I said " Honestly, > no, but it could come back at any time because the disease is progressive > or the medication could quit working. " I also mentioned how I was > " advised " to fill out the forms in the most negative terms using my > symptoms when the RA was at it's worst even thought now it's so much > better. She made a face but ultimately said the case is worth > pursuing. She doesn't get paid if I don't win so in that light I don't > have anything to lose. I think she is maybe going to try and get the > disability on the problems with my hands. I don't know. She is going to > contact the rheumy and coach him on the type of letter and wording that is > needed by Social Security, as well as get copies of specific tests, so that > sounds as if she knows what she is doing. > > But I can't say I still am experiencing all these other terrible things > when I'm now not, and I look and move normally. My wife said that I should > turn it all over to her now and quit worrying about it and if she didn't > think there was a change I could get disability she wouldn't have taken the > case. So now I don't know what to do. It's like I definitely qualified > for disability when I was first stricken, and I probably will some day down > the road, but as I am right now I probably don't. So now what? I was > hoping someone on this list with a similar experience at one time could > give me some suggestions or reassurance. > > In the mean time, it's good to be back here with you all and thanks for any > suggestions any of you can pass along my way. Sorry to have written so > much at one time (and now my hands hurt!) but it's been a long time since I > " talked " to you all and I needed to give you an update on my condition and > fill you in on all this Social Security Disability stuff so hopefully > someone out there could help. > > Oh, one other thing -- you can be disabled and NOT qualify for Social > Security Disability payments because you have to meet THEIR definition of > disability. The gist of it is that your disability has to prevent you from > doing ANY kind of work, no matter how Sedentary. They even have different > levels of work defined, including Sedentary. The one thing that stands out > though in the definition under Sedentary work is that you must have " normal > function of at least one upper extremity " which of course I don't because > of my hands and shoulders, and to a lesser extend, my elbows. So maybe > this is my actual Ace in the Hole. We will see. > > Well anyway, thanks for listening " . > > Kossart - RA > Peru, Il, USA > [Please refrain from sending any unsolicited attachments, pictures or > forwards - Thanks!] > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 ! Great to hear from you. Sorry it took me so long to respond, but there is a lot in your post, and I am way behind in my writing. First of all, it's really good news that you are feeling somewhat better and that you managed to get off of the prednisone. Way to go! I think it was a good idea to consult an experienced lawyer to look into the disability issue. I'm a little bit suspicious of your former " representative " and his wife. Also, his wife has given you a very bleak outlook - it doesn't necessarily have to be that in the future you will decline dramatically. I don't want you to have that hanging over your head. Better to hope for the best than assume the worst. When you fill out your disability forms and go before the judge, my advice, although not based on experience but just instinct and what I have read, is to both be honest and be fair to yourself. As others suggested, report your limitations in a realistic way. Only you really know what you can and cannot do. You neither want to be burdened with lies nor a job that you cannot handle physically. This isn't an easy process or situation to be in, I'm sure. It's not unusual at all to be rejected a few times. Your lawyer will help you sort things out and determine the best plan of action. Hang in there. Good luck and let us know what is happening, OK? [ ] MIA . . . Me! [LONG} > > > Hello all, Hi , Hi a's, > > Got to thinking lately and realized it has been many, many, MANY months > since I posted to the list. Time flies! I'll try to give a quick update > on my condition to bring my friends on this list back up to speed on how > I've been doing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2002 Report Share Posted February 3, 2002 , It is good to see you post again. It has been a looooooong time. I too am in the same purgatory that you are in with SS disability. They sent me for a psych eval about 3 weeks ago and have heard nothing from anybody over there since. That psych appt lasted all of about 20 minutes. I guess anything to waste the government's money. I am sure that SS will deny me like everyone else, but the not knowing part is lousy. I guess once the denial comes in then it is off to an attorney or just forget about it. What a way to live. Hope you enjoy the rest of the weekend (what is left) and have some pain " less " days. Gentle, tender, angel hugs, Debs in FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2002 Report Share Posted February 3, 2002 Hi ! I missed you! I thought you forgot about me; glad you didn't as you have been very helpful and supportive in the past. The bleak picture the representative's wife painted was actually true at one point when all of this started. I have gotten better but it took forever. Like I said before, if I didn't know better I would think I was almost healed. The only thing which hasn't gotten better is my hands. I've got a couple of the nodules and I can't make a fist. I had been doing some exercises and even bought a hot wax machine (white elephant!) and saw a physical therapist at the local hospital which is only a few blocks away from home. I think the lawyer is going to try and use my hands mainly for getting disability. But most of the swelling and pain is gone! I can literally do things I thought I would never be able to do again: run up and down stairs, use power tools, kneel, etc. Not that I am 100 per cent, there is always a touch of pain or discomfort just to remind me I still have the RA. So I am worried that NOW I won't qualify for disability but some day if this gets bad again I will. Very confusing. It did a number on my head to realize that I actually couldn't work anymore and took a long time for me to accept it. Then I got used to the idea and was looking forward to all the free time and things I could do while still being able to contribute financially to the family. Now it looks like I may have to give that up and think about having to work again. My head is spinning! I wish I knew what was going on FOR SURE so that I could deal with it and get on with my life. I asked the rheumatologist if I could never get as bad as I was before I was diagnosed because now I am being treated and wasn't then. He told me he couldn't say, no one could, as everyone responds differently. I feel like Cinderella and everything is wonderful NOW, but at midnite it will all end and things will go back the way they were, or worse -- except I don't even know what time that will happen or if it will at all. Boy, talk about living life to the fullest for the moment. You will be glad to hear that all sign of the pericarditis is now gone. A few months ago the doctor and rheumy said they couldn't detect it anymore and so they had me get a follow up echocardiogram and that showed it was gone or minimal or whatever the term was they used. I hope that's the end of it. So for now I will maybe start looking for something part time and also go to an employment outfit like Manpower and see if there is something out there for me to try. It won't be Manpower, though. They blew me off last year and that's a whole 'nother story! Hope you are doing well yourself, . I will try to check in more often. At 03:29 AM 1/31/02, you wrote: >! > >Great to hear from you. Sorry it took me so long to respond, but there >is a lot in your post, and I am way behind in my writing. > >First of all, it's really good news that you are feeling somewhat better >and that you managed to get off of the prednisone. Way to go! > >I think it was a good idea to consult an experienced lawyer to look into >the disability issue. I'm a little bit suspicious of your former > " representative " and his wife. Also, his wife has given you a very bleak >outlook - it doesn't necessarily have to be that in the future you will >decline dramatically. I don't want you to have that hanging over your >head. Better to hope for the best than assume the worst. > >When you fill out your disability forms and go before the judge, my >advice, although not based on experience but just instinct and what I >have read, is to both be honest and be fair to yourself. As others >suggested, report your limitations in a realistic way. Only you really >know what you can and cannot do. You neither want to be burdened with >lies nor a job that you cannot handle physically. This isn't an easy >process or situation to be in, I'm sure. > >It's not unusual at all to be rejected a few times. Your lawyer will >help you sort things out and determine the best plan of action. Hang in >there. > >Good luck and let us know what is happening, OK? > > > Kossart - RA, Type-2 Diabetes Peru, Il, USA [Please refrain from sending any unsolicited attachments, pictures or forwards - Thanks!] Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.