MIA . . . Me! [LONG}

[Guest guest]

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

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