Re: RA- How long have any of you been able to work after a diagnosis?

[Guest guest]

Sorry to hear about your dilemma, but I think at one time or another

we have all been there or will be there. I quit working at the advice

of my rheumy quite soon after I was diagnosed (within six months) as I

was having a lot of complications and simply could not keep juggling

all the things in my life including work. It was having a bad affect

on my health. I think that it varies from person to person, but I

finally came to the realization that I know longer could keep up with

my job and my disease and my family all at the same time. I needed to

concentrate on pacing myself and listening to my body's needs (like

resting when you are tired). Good luck with this decision. I know it

is not an easy one to make and then of course there is the fight for

disability that begins which is not easy. Remember to keep copies of

everything you send Social Security as they do lose things. In the

end, I won my battle for benefits with them and hopefully you will

too. Good luck and please know you have an excellent support team

here no matter what you decide to do and when.

Tracie

>

> I have RA and have been treating it with enbrel and Methotrexate for

> about 4 years. I cannot seem to keep up with my job anymore. My

> rheumatologist says that the disease, " just wears you down. " What

> experience have you had with the problem of exhaustion and working?

If

> you finally quit, what contrubuted to your decision? I am on

> additional pain medications and just tired of all the compensating I

> have to do to keep up.

>

> Thanks.

>

[Guest guest]

> >

> > I have wondered that too.. I mean, I am young with this diagnosis,

> and am afraid of the future.. and how you decide when you can't do

it

> anymore? I am also newly diagnosed, so I am just curious about

those

> of you who are still working, or those that did and had to quit?

> Thanks- Kristi

> >

> > the disease, " just wears you down. " What

> > experience have you had with the problem of exhaustion and

working?

> If

> > I too had to leave my Job.. I Have RA Fribo and it just made it

hard to do my work so I am now on disability and I too am young only

48 now.. hope this helps

Janet IN IL

[Guest guest]

I am 54 years old and was diagnosed with RA and Fibro about 4 years

ago......there are days I feel like I cannot go on and I have had to make many

changes in my home life but I am continuing to work full time.....tho I drag

myself into work some days......I am just trying to keep a positive attitude and

I doubt my boss realizes that I have to take drugs just to be there

everyday.....

Pat in So Ore.

jan <smokey61080@...> wrote:

> >

> > I have wondered that too.. I mean, I am young with this diagnosis,

> and am afraid of the future.. and how you decide when you can't do

it

> anymore? I am also newly diagnosed, so I am just curious about

those

> of you who are still working, or those that did and had to quit?

> Thanks- Kristi

> >

> > the disease, " just wears you down. " What

> > experience have you had with the problem of exhaustion and

working?

> If

> > I too had to leave my Job.. I Have RA Fribo and it just made it

hard to do my work so I am now on disability and I too am young only

48 now.. hope this helps

Janet IN IL

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[Guest guest]

[Keep in mind that most people with RA who are doing well (and there

are many) do not spend time in groups like this] Good point really

Im glad that u r still working and i hope i can work all the time cuz i

love my work very much and i worked very hard to be in this position.

Marwa

[Guest guest]

[Keep in mind that most people with RA who are doing well (and there

are many) do not spend time in groups like this] Good point really

Im glad that u r still working and i hope i can work all the time cuz i

love my work very much and i worked very hard to be in this position.

Marwa

[Guest guest]

I normally stay out of the way when I strongly disagree with a statement but

this got to me.

Yes, sometimes you can't let every little pain get to you BUT sometimes all

those little pains can get over bearing. I appreciate your stick to it Lynn,

your determination but there may be a day when the RA will win out. It is nice

to think that you can work like you do until a certain age, but you never know.

I hope for your sake your body responds well to drugs and have wonderful doctors

who can help you.

For me it isn't a matter of " sucking it up " . To answer the subject of the email

I worked a whole 3 years after my diagnosis. I was 23 when I had to quit

working. That doesn't mean I gave up, or let the disease win, it means that I

was simply unable to work. My RA effected my work greatly and my life outside

of work. I came home after 8 hours, cooked and was in bed by 730pm because all

I could do is sleep after working. I was never like that before RA. Yes, it is

a sobering experience to feel useless at age 23 but it did open up

opportunities. It allowed me to be with me then 3 year old son. It provided my

opportunities to homeschool him. It provided me oppotunities to keep my house

orderly.

I have been on just about all the heavy hitter drugs. I have had reactions or

they have yet to help me. My knees are bone on bone, my hands are drifting and

trying to do my best to consider surgery.

I am 11 years out of my diagnosis now. I don't feel any less of a person

because I am unable to work. I am glad I was able to get SS so I could allow my

body to rest so I could have some quality of life. It is nice to be able not

sleep my life away because my body is exhausted from the labors. We each know

our breaking point. Some people have their disease under control and therefore

can deal with their bodies more effectively. Some people have different mental

capacities that can either help or limit their situation. Some people have

bodies, much like I do, that no matter how determined they are, just aren't

going to get wonderful success to the point that they can just suck it up.

If your body is telling you enough is enough, then that is enough. This isn't

like body building or rehabbing a knee. We have to be mobile, but not to the

detriment of our bodies and minds.

And Lynn, I am sure you didn't mean to say suck it up in a nasty way. Before I

was diagnosed I was told to suck it up when my joints were swollen to the point

they turned purple. Somehow I was imagining everything that effected me. I was

happy for a quick diagnosis but those words just cut to my core. People told me

I was post partum or doing it for attention...I wouldn't have wished this on

anyone, much less to make it up.

Shandi

Re: [ ] Re: RA- How long have any of you been able to work

after a diagnosis?

IIt's all a case of mind over matter, if you don't mind, it doesn't matter.

Some days the best thing to do is get involved in a very mind intensive project

to focus your attention elsewhere, other days, just suck it up. It can sound

harsh but YOU CAN DO THIS.

Lynn

lnburrell@...

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[Guest guest]

I do appreciate your situation, for me sometime the sheer fact of someone

telling me " I can do this " is enough for me to take a deep breath and keep

pushing forward. My pain, like yours, is real. I admit I have a very high

tolerance to pain, and because I have been a diagnosed insulin dependent

diabetic for the last 11 years, I guess, having received another life sentence

in this case RA, I just was able to accept it. I truly did not mean for it to

be nasty, I meant it to be motivational. For some that type of motivation is

better that the soft touch. I want to believe that I will continue to work thru

this, I can't give myself even the smallest chance to give up. My work is

important to me as is my family. If you could see my house you would se that I

am by no means doing it all. I am just happy my husband hasn't divorced me or

the board of health isn't knocking on the door, worst of all that the dust

bunnies are coming to life to attack us. Seriously, I have had to stay positive

and not let this get to me or depression will creep up and never leave. I am

most afraid of slipping into an unrecoverable depression. Medication can only

help so much, there also has to be some mental determination. I am trying to

keep a stiff upper lip, and get thru this. My doctor has been great, I am quite

optimistic by the results I have had from the meds thus far. I just hope it

continues. I have been suffering for over 7 years without a definitive answer.

Some of the things that I had been doing like eating more protein helps, just a

little. But like you said every little thing counts both towards

recovery/remission and to our success at not letting the RA win. You are right,

someday it might win, but I am going to try really hard to be stronger than the

RA.

No one be offended at what I say, PLEASE. I am really enjoying everyone on this

board and I have found incredible strength from reading everyone's posts.

Lynn

lnburrell@...

Re: [ ] Re: RA- How long have any of you been able to work

after a diagnosis?

IIt's all a case of mind over matter, if you don't mind, it doesn't matter.

Some days the best thing to do is get involved in a very mind intensive project

to focus your attention elsewhere, other days, just suck it up. It can sound

harsh but YOU CAN DO THIS.

Lynn

lnburrell@...

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[Guest guest]

2 Marwa,

As you can probably see by the responses to your questions, we are

all suffering from the same condition differently -- having the RA in

varying degrees and levels of pain and frequency of flares. Some are

actually in remission, which should be your goal and focus. Some are

very well controlled with meds and some of us (myself included) are

not being helped by much and are becoming extremely crippled. If you

have no hands or arms that move you can't work certain jobs. So, try

to get around it as much as you can by finding something you can do.

you may have to be self-employed making a living from home. I pray

you are one of the lucky ones who get to see a new RA drug or RA

therapy that will put you into remission for a very long time so you

don't have to worry about any of this. In the meantime, finish your

education, go as far as you can.

I think you should finish your education. I think depending on your

level of pain you should push through as much pain as you can. If

you are flaring out of control, then you will obviously not be able

to go that week or that semester. I worked even when in a flare. I

had to be dressed by my husband, driven to work everyday, and come

home to cook and care for my disabled special needs daughter even

though I couldn't even dress myself. So I guess it just depends how

far are you willing to push through the pain when the going does get

tough and it will on occasions. Again, we are all different with

different circumstances. I pray you never face days like that.

I think it is safe to say most RA'ers have an extremely high

tolerance for pain. We have no choice. You go to sleep with it,

wake up with it, year after year you develop a high tolerance.

People wonder how you do the things you do with a sed rate of 125

which is very common for me and I am sure many others. Nonetheless,

you have to develop an attitude to push through the pain to the other

side even if it means getting only one class at a time completed that

semester; that's one step closer to your goal. You can take on

positions not requiring physical work with a PhD -- so go for it!!

Maybe you can become a writer, or technical writer or many other

professions not requiring too much activity. Get into real estate or

marketing if you have a good sales personality. My goal was

physician assistant, then hopefully become a medical researcher. I

trained as an EMT to increase my chances of being accepted into PA

school. It was only a 2-year program at the time. Thanks to RA I

didn't quite get there, also daughter became ill, but believe in

switching gears if you have to. Whatever it takes. My first picture

of a woman with RA was a lady in a magazine in a wheelchair, typing

on a computer (a technical position) with some sort of device using

her teeth. Her hands, arms, elbows, legs were frozen and extended

out in front of her. Yet she continued to work. It wasn't mentioned

in the article but I am sure she needed help getting dressed and

getting to work.

I think most of us would love to continue to work but also the

acceptance has to be there if you can no longer do that and also

acceptance in the workplace for the disabled. I just saw a movie at

the cinema, sitting and standing was impossible in those tiny chairs,

so the public needs to change with how disabled are accommodated.

And some circumstances just won't allow it.

But you are alive so keep pushing through the pain as far as you can

go for as long as you can.

Well, now that I have written a novel to your question, I think I

will leave you with that. Best wishes.

Ebony

[Guest guest]

Ebony,

Thank u a million times, u wont imagine what did ur email do to

me, i feel like im ready to rule the world now.

You really have a good spirit inspite all u r going through, u made me

feel ashamed of my self. Plz keep the work.

Marwa

[Guest guest]

You're welcome, Marwa. I am happy you feel rejuvenated to keep moving

forward, to enjoy your life is really what it's all about -- in spite

of the difficult times.

No need to be ashamed of anything. Don't worry about anything. Take

care of yourself.

peace and healing,

Ebony

[Guest guest]

AMEN! I couldn't have said it better.

in KY

Re: [ ] Re: RA- How long have any of you been able to work

after a diagnosis?

IIt's all a case of mind over matter, if you don't mind, it doesn't matter.

Some days the best thing to do is get involved in a very mind intensive project

to focus your attention elsewhere, other days, just suck it up. It can sound

harsh but YOU CAN DO THIS.

Lynn

lnburrell@...

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[Guest guest]

I would love to pipe in here! I was diagnosed with JRA when I was ten years

old. It bothered me through school and then went into " remission " right

before I graduated. I had not problems except my right elbow doesn't open

all the way, but that isn't even a big deal. I was a very active person,

never sitting at home, always on the go. Then about 3 years ago my hands

started bothering me. Then the fatigue kicked in. Now for me, this is the

worst part. I can deal with the pain most of the time, and can push through

it if I need to, but the fatigue... Well. That is what determines that I

can no longer work. I was working in a preschool when the RA started to

come back. I only worked 6 hours a day, but found myself napping while my

students napped (my aid would stay awake LOL) Then being exhausted the

whole way home and having to take another nap until my kids got home from

school. I would do my best to get through dinner and often times wasn't

able to. Now I work from home and my business often suffers because of my

fatigue. I haven't started the battle with SSI, and I hope to not have to-

as long as I can make enough working from home I think I will be ok. I have

no Rheumatoid Factor in my blood, so I am not sure how that battle would go,

and quite honestly, not sure it is worth the stress..

Love and Peace,

Semalee

My Blog:

http://jellodoesntnail.blogspot.com

My webpage:

http://360./considerablewellness

Words to live by:

" A meaningful life will not be found in the next job or the next car. The

way you get meaning in your life is to devote yourself to helping others and

creating something that gives you purpose. "

Morrie Schwartz

[Guest guest]

-AIn't it the truth!!!......I agree with all that you said! It wears

you down to the point that getting dresed takes all day!! AND...it

all depends on what type work you do too!! If I sat at a desk all day

I probably would still be working. But working is health care is

demanding on your brain and your body...plus they limit what meds you

can take and work...that got me as much as the exhaustion!! Without

my meds I couldn't have done it!! I have 2 grandchildren who I could

like to remember their Nana as someone who did things eith them and

had then sleep over on weekends, baked cookies with them ect. I

couldn't do that if I had run myself into the ground...to say nothing

of the damage I would have done to my body by pushing it beyond what

it could do. There comes a time when your body, your friends, your

doctors and you yourself say....hey...you can't keep doing this!!!!!!

And that time is different for each of us depending on our disease

progression, our jobs and our body condition!!!jenna

-- In , " " <melissahancock@...>

wrote:

>

> AMEN! I couldn't have said it better.

> in KY

> Re: [ ] Re: RA- How long have any of you been

able to work after a diagnosis?

>

> IIt's all a case of mind over matter, if you don't mind, it

doesn't matter. Some days the best thing to do is get involved in

a very mind intensive project to focus your attention elsewhere,

other days, just suck it up. It can sound harsh but YOU CAN DO THIS.

>

> Lynn

>

> lnburrell@...

>

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>

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>

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>

>

>

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>

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>