disability

[Guest guest]

Hi Carol

They always deny your first attempts at disability. So try, and retry.

Also a good attorney helps. I could have got it sooner but I gave up too

soon. Finely with a lawyer I got it. Don't give up. They want you to give

up. They have no clue of what you can do or not do. Check our archives as

we have had many discussions on this over the years.

Hang in there. God Bless

Priscilla

[Guest guest]

HiCarollee

You are right, movement with spondylitis is the key, a change in position,

some light to moderate exercise can change your whole outlook on the disease

I was finally diagnosed in 1983 and promptly retired medically from work

because of the prolonged standing and sitting I had to do. Then I met up

with a fuzzy mascot costume and I continued to act as a mascot, animating 5

different costumes at one time, three on a weekly basis and the other two on

a part time basis. It was the best thing that ever happened to me. It not

only helped physically as I warmed up and exercised with the teams I worked

for, not the full workout but a modified one that my back could handle. It

also helped me Psychologically as well, gave me a much better outlook on

life. I am not however going to recommend becoming a mascot as it is hard

on the body and I suffered with my rheumatoid arthritis in my knees and

shoulders after a couple of years, but I managed to keep active as a mascot

for 12 years.

I am paying for it now as I put extra stresses on my body which it really

did not like. Up here in Canada, if you are HLA B27+ then the disability

insurance will kick in when you apply for it,

I am not doing too badly at the moment but at 70 years of age I am still

moving around fairly freely, but not without some pain. I am on a narcotic

pain killer and have had my SI joints and lower LS Spine injected with

steroids with some success which I thank God for as it cut out some of the

SI Joint pain I have been plagued with. It took them over 10 years to

diagnose me properly and until that diagnosis, I went through the rigamarole

the doctors put you through including the all in your head diagnosis. My

good luck is that I finally got to the right doctor and am still with him.

As far as I can look back, it all started in 1973 when I had an attack of

something that lowered my white blood cell count to dangerously low levels

forcing them to isolate me in a hospital when I was in the Armed Forces.

All my pain problems came after that. I have AS/RA/ReA/and psoriatic

arthritis to top all of it, so if it is not pain from one of those processes

it is from another. But my doc keeps me at a tolerable pain level.

Get a physiotherapist or physiatrist to custom design an exercise program

for you keeping in mind your limitations, and you will begin to feel much

better.

Blessings

Fr. Dave

[Guest guest]

i can relate to this post. the thing i try to do is find some balance between

rest and movement. you can't do too much of each and finding the balance is the

key.

> >

> > Is it common for folks with Spondylitis to have intermittent symptoms for

some time before the condition reaches a chronic stage? I know there were a few

years where I would be walking around like I was 80 years old for a period of

time and then I would be completely fine for a few months.

> >

> > Even now, being treated with Remicade, it's like some infusions wear off

sooner than others.

> >

> > Thanks,

> > Carol Lee

> >

>

[Guest guest]

I really appreciate the replies and hope to hear from others. I'm going to ask

my attorney if it would be helpful with the appeal if I brought in some

responses. The very nature of spondylitis " seemingly " contradicts the need to

be on disability. It is hard for others to understand, if you need movement,

why can't you do a light task position. It really does come down to that all

important balance between moving and resting. The Social Security

Administration also seems to put a heavy focus on jobs with a sit/stand option.

They don't seem to understand that this is not the solution, it's not movement.

I tried volunteering for the concession stand for my son's baseball team. I

chose a light game day and made sure the date was a couple weeks after my

infusion date so I would be at my best. I could sit or stand but there was

little room for movement in the stand and after 2.5 hours, I was absolutely

miserable.

It seems like even folks with other forms of arthritis don't relate to this need

for movement. My parents both have bad arthritis but on my really bad days,

everytime I get up, they get all worked up trying to get me to sit down again.

Are there any good reference materials that cover this aspect of spondylitis?

Thanks!

Carol Lee

[Guest guest]

Hi Carol Lee,

I just recently joined.  I have not officially been diagnosed with spondylitis

yet.  I believe I have ankylosing spondylitis/sacroiliitis and I am just now on

my battle to get it officially diagnosed.  Reading everyone's thoughts and

stories are really hitting home to me with the pain and issues I have been

suffering since 2006 to no physician avail or management.  Just a short

intro........

Anyway, the reason I am responding to you now is that I successfully got on

disability on my first appeal without a lawyer.  Before my severe medical

problems I worked in the healthcare field as a medical transcriptionist for 15

years as well as was a certified professional midwife until whatever I have took

its toll on me.  So I wanted to issue a few pointers that might help you and

any others out there needing help.  First off, as a medical transcriptionist my

priority of my job was medical records.  I know if it is not documented, it was

not done or is not even talked about.  This is the only thing the case workers

have to picture you and your life with is based on your records because that is

all they see.   Your picture of your daily life has to come to play in those

records so they can see that.  Where does the info come from that is in the

records?  From your conversation with your physician.  Don't be afraid to go

to the doctor and say I

can't stand in line for more than 10 minutes without the need to lean on

something or sit down.  Don't be afraid to say I can't even go to the mall with

my kids because I can't walk that long.  Don't be afraid to say I can't even

buy groceries unless I have a cart to lean on.  You and only you have to get

the info out there so that it can be relayed from you to your doc to back to the

disability examiner.  If your doctor doesn't keep good records, get another

doctor.  I had to.  You have to portray your picture successfully.  The more

doc visits, the better.  You need to prove that you have severe pain and

difficulty in life and that you are doing all that you can do to help yourself

with the correct treatments.  If the doc wants to try injections, try them.

 Be open to the doc's suggestions and attempts to help you get better.  

Another step to help you..........obtain ALL of your medical records and send

them personally to your disability examiner.  The examiner upon getting your

case will send requests to all the physicians/hospital you listed only. If no

response comes in, the case is based on what is received as far as records.  In

my case, my examiner only got records from 3 out of 7 physicians.  I requested

all my records personally and mailed them certified to my examiner so I had

proof she received them.  Keep copies for yourself also.  You can go over the

records for accuracy as well.  Many, many times things are incorrect in the

records.  

You basically can submit anything you want to the examiner, anything you feel

will help them see what your daily life is like.  Have your friends/family

write letters on your behalf about how your function is or lack thereof.  How

you have to take double medicine to even sit through your kid's ballgame, etc.

 How you would not be able to hold a job due to no flexibility to let you

sit/stand as needed and the pain you suffer when attempting to do so which

triggers the need for pain medicine, which triggers sleep, etc.

When you fill out the form about your daily life...........Fill this out based

on your WORST day, not your BEST.  Many people try to downplay how their life

really is.  It's habit and its nature because we don't really want everyone to

know the struggles we go through but its imperative that your examiner know

exactly how your life is.  If you get up, lie down and watch TV because you are

sore and stiff, put that down.  In 2 hours if you take a shower, put that down,

etc.  Make sure you put down babysteps on that form stating exactly your

activities day to day and how they affect you in the matter of your body, your

health, and how you feel.

 

Lorrie Stanley, Texas

Symptoms 2006/Diagnosed 2008

>________________________________

>From: Carol Lee Dunn <carolleedunn@...>

>

>Sent: Tuesday, July 26, 2011 7:36 AM

>Subject: Re: Re: disability

>

>

> 

>I really appreciate the replies and hope to hear from others. I'm going to ask

my attorney if it would be helpful with the appeal if I brought in some

responses. The very nature of spondylitis " seemingly " contradicts the need to

be on disability. It is hard for others to understand, if you need movement,

why can't you do a light task position. It really does come down to that all

important balance between moving and resting. The Social Security

Administration also seems to put a heavy focus on jobs with a sit/stand option.

They don't seem to understand that this is not the solution, it's not movement.

I tried volunteering for the concession stand for my son's baseball team. I

chose a light game day and made sure the date was a couple weeks after my

infusion date so I would be at my best. I could sit or stand but there was

little room for movement in the stand and after 2.5 hours, I was absolutely

miserable.

>

>It seems like even folks with other forms of arthritis don't relate to this

need for movement. My parents both have bad arthritis but on my really bad

days, everytime I get up, they get all worked up trying to get me to sit down

again. Are there any good reference materials that cover this aspect of

spondylitis?

>

>Thanks!

>

>Carol Lee

>

>

[Guest guest]

Lorrie,

Your response is very interesting to me because I am now in the process of

putting together a written response to the Notice of Decision. I'm five

microsoft word pages into it.

One of the problems I am dealing with is that I am one of those who spent years

going from specialist to specialist trying to find out what was wrong with me.

They all either didn't take me seriously and dismissed me (I even had one

orthopedist who told me all my problems were because I didn't exercise. Never

mind I used to be into body building and I was telling him I was incapable of

exercising anymore.) or they just missed the diagnosis. By the time I finally

found the rheumy who diagnosed me, the blood draw for the C-Reactive Protein

test was done 10 days after my last date of eligibility. (I don't have

Ankylosing, my form doesn't show up on the HLA-B27 Antigen.) So, I have two

burdens of proof: 1. prove I was disabled prior to my last date of

eligibility. 2. Prove I am still disabled. (I didn't file for disabilty for

about 1.5 years after diagnosis because we simply didn't need the money. I

applied when my husband's income was reduced by about 33%)

By the time I saw the rheumatologist who diagnosed me, he had these things to

say: 1. My C-Reactive Protein levels were as high as his most severe patients.

2. My muscles were spasming to his slightest touch. 3. I was succeptable to

pneumonia because the inflammation was so severe that my rib cage was barely

expanding causing my breathing to be very shallow. In addition to this, after

sitting through my first infusion, I went into muscle spasms so strong that I

could not speak and his staff thought I was having an allergic reaction to the

medication. He saw me like this and when the spasms finally settled down, he

asked me how I had been dealing with this on my own for so long. I told him I

had no choice, he was the first doctor that would listen to me. So to the SSA,

he provided his records as well as a written statement. Their response was,

" His treatment records do not indicate the presence of impairments that result

in the severe symptoms he noted in the 2011 medical source statement. "

So apparently, as you were describing, the SSA expects to see things spelled out

in the medical records and he had not done this. They actually have this to say

about my primary as well. I have not seen the rheumatologist's records but I

have seen the primary's and her records are very brief and concise. She

documents everything in medical terms, she just doesn't go into detail. My

written response to the SSA is this, " A doctor's notes are expected to be for

their own use and they do not typically spell everything out for themselves.

Taking the time to document the severity of my condition does not get her any

closer to her agenda of finding the cause. The fact that she was sending me to

a specialist and running these tests to begin with is an indication that the

problem was a severe and ongoing issue. I have not seen the rheumatologist's

records, but again, I would assume his notes would be just as concise as the

primary care physician's. The rheumatologist can tell more about a patient's

pain level by the level of their C-Reactive Protein. He does not need to use

descriptive and subjective words in his notes. "

So Lorrie, I ask you as a medical transcriptionist, are my observations accurate

or do I just happen to have two doctors who consider medical terms sufficient

documentation and don't go into great detail in their notes?

Thank you!!!!!!!!

Carol Lee

[Guest guest]

In response to:  Another question I have is, do most folks with Spondylitis

have to

frequently change what they are doing? Like, I can't sit, or stand for

long periods of time. I have to constantly change what I am doing or I

start getting stiff and sore.

This is the reason I haven't slept straight through the night in 15 years.  My

body can't stay in bed for more than a few hours.  The pain awakens  me. 

Usually I just get up and go to the bathroom and that's enough movement to let

me go back to sleep.  Sometimes though I have to do an hour in the recliner

before I can lie down in bed without the pain again.  In my spondylitis support

group we had a guy with what seemed like the perfect job.  He works from home

here in Indy for Microsoft.  It's all on computer and he's free to take breaks

whenever  he wants.  If he can't sleep he can go work in the middle of the

night.  As long as the work gets done they don't care what size time chunks it

gets broken into.  There are so few jobs like that though. 

As far as the disability....I found the person I talked to appreciated the

fatigue factor.  Yes, I get housework done but now I use aids and modifications

and what I did in a Saturday morning now must be divided up so it takes an hour

every morning of the week and must be followed by a couple hours of rest.

Janette in Indiana

From: carolleedunn1 <carolleedunn@...>

Subject: Re: disability

Date: Sunday, July 24, 2011, 12:13 PM

 

Another question I have is, do most folks with Spondylitis have to

frequently change what they are doing? Like, I can't sit, or stand for long

periods of time. I have to constantly change what I am doing or I start getting

stiff and sore.

The reason I am asking is because we have been going through the process of

applying for disability and after meeting with a judge, I was denied. They seem

to make light of the evidence and blow my abilities out of proportion. They

state that I am " able to drive, do laundry, shop for groceries, cook, clean,

vacuum and iron. " They left out all the details like, sometimes I have to load

the dishwasher from my knees because I can't lean over, I am not " always " able

to do these things, and I can not do any of these things continuously - I need a

lot of breaks.

I once saw an interview of a guy with spondylitis and I remember him saying,

" movement is my friend " . That stuck with me because it is true for me as well.

The more I am capable of moving around, the better off I am; but then you just

reach that point where no matter how much you pace yourself, the movement has

exhausted you and you have no choice but to give in to resting, which only makes

you worse.

Guess I am just wondering if the way Spondylitis affects me is so different from

everyone else because the judge has displayed a complete lack of understanding

of the ups and downs that at least I have experienced with Spondylitis.

Thanks!

>

> Is it common for folks with Spondylitis to have intermittent symptoms for some

time before the condition reaches a chronic stage? I know there were a few

years where I would be walking around like I was 80 years old for a period of

time and then I would be completely fine for a few months.

>

> Even now, being treated with Remicade, it's like some infusions wear off

sooner than others.

>

> Thanks,

> Carol Lee

>

[Guest guest]

Thanks Janette and everyone else that responded. I think I really over

estimated the judge's knowledge of the nature of spondylitis and didn't do a

good job of explaining how it affects me. I thought my history of c-reactive

protein results were self explainatory. That, and the fact that I had anemia of

chronic disease for three years before I was finally diagnosed.

Has anyone ever found anything that explains the connection between spondylitis

and dry,cracked feet? I've only found online brief information that the two are

connected but no further information. Perhaps the fact that I still get this

badly in spite of the Remicade, is evidence to the fact that while the Remicade

greatly improves the condition, it doesn't cure it and it doesn't necessarily

control it completely.

Thanks,

Carol Lee

[Guest guest]

Hi Carol,

 

I have reactive arthritis and this summer found strange, small bumps on my feet.

I was going to ask my rheumatologist about it, but didn't get the chance.

Anyway, I found something on the internet that said that is one of the symptoms

of ReA ... very weird, I don't know why that would be. I know that's not the

same as dry, cracked feet, but still, it makes you wonder!

 

-- Kay

[Guest guest]

huh, the things you learn.

Carol Lee

Re: disability

Hi Carol,

I have reactive arthritis and this summer found strange, small bumps on my

feet. I was going to ask my rheumatologist about it, but didn't get the chance.

Anyway, I found something on the internet that said that is one of the symptoms

of ReA ... very weird, I don't know why that would be. I know that's not the

same as dry, cracked feet, but still, it makes you wonder!

-- Kay