Re: What next??

[Guest guest]

Jane,

Well, I don't have any suggestions, advice, or jokes, but what I can offer is

some positive vibes and prayers your way that you start to feel better soon.

You sound like one strong lady, hang in there!

Axelrod

[ ] What next??

Hi everyone,

Last week I spoke of increasing problems with PA, and in a message

stated that I'd just dumped ice water on myself by accident...well if

that was only the worst thing that had happened that day. Later, at

the board meeting, we were preparing to review the next fiscal year's

budget, and we distributed the one for the prior year that I had

copied and brought in error...my boss (the director) was

embarassed...I felt like crying (did on the way back). I've been

making so many mistakes at work.

One of my co-workers started a conversation with me as to why I'm not

applying for disability (her husband is disabled with FM). When I

went to apologize to my boss he wasn't very sympathetic. He too asked

why I don't go on disability and just do billing for my husband's

business (does he want me to screw up our business too??!). He told

me that other people are having to pull my weight around here and I'm

unable to do the work in the job description, blah, blah, blah. I'm

not ready for disability, I'm only 44, have children to raise and put

through college. The PA could improve any day now. I don't think

anyone who doesn't have it can understand how some moments you can

feel good and then the next moment fatigue and pain hit you like the

meteor that drops on people in the new migraine med commercial.

So, as a compromise for now, I'm going to be working 5 days a week, 7

hours per day instead of trying to do 4 - 9 hour days. Ususally by 2

p.m on any given day, I'm about ready for the pain meds, heating pad

and recliner, but they frown upon that routine here in the office,

can't imagine why.

To top it off, I had a annual phsyical with my gp and have to see him

again next week due to " everything is elevated " ... blood sugar,

cholesterol, liver panels, etc. The liver panels I don't understand

as the I see the rheumys vampire's every 4-6 weeks and it's all been

normal up to now. In addition, tomorrow I'm having a 24-hour ph

stomach acid test and get to have a tube through my nose to my

stomach. The young ones at home are horrified at the thought of this

test and won't want to be seen in public with me. I've had GERD for

years but looks like all the NSAIDs are doing a number on my stomach.

Wow, what a vent, feel better already being able to write it all down

and send it to this wonderful, compassionate group of people I call

friends. Suggestions, advice and jokes are welcome

Warm blessings,

Jane

[Guest guest]

Dear Jane, I'm sorry to hear about your unsympathic boss, (maybe he can get

a job at the Cleveland Clinic..lol) Seriously, though it isn't fun and I

know how hard is is to concentrate when you are sick and in pain. I don't

know how working with your husband would work for you, but it was the

perfect solution for me. I only had fibro then, or at least that's all I

knew I had so if I was late to work, it wasn't the end of the world. We

kept a couch in the back room so I could lie down during the day if I got

too tired and that really helped when the afternoon fatigue hit me. It was

a complete change of careers for me. I had worked before as a fashion buyer

for a big department store and now I had to get my license to be an

insurance agent.

I managed to take the test and get licensed and for about 9 years it worked

out great. When PA hit, things changed so much I couldn't begin to work all

the time. it seemed like I only got worse and worse, so I ended up giving

up on working full time. I'm still considered an employee and do consulting

work and I am in on all the major events that go along with running an

office. I still miss the people though and the day to day fun of just being

there with my husband. I guess what I'm trying to say is don't give up on

the idea of working with your husband too quickly. I know some spouses

can't do it and it's just too much togetherness, but we did just great. You

can at least consider it.

Nothing is worse than having to be on the ball when you have brain fog from

pain and everything else you deal with. People just don't have any idea

what we go through and they act like going on disability is a " fun decision

to make " . I've actually had people tell me I must be happy to be sick so I

can stay home all day. I want to just knock them upside the head, and say,

" Are you completely nuts? " They just don't think. No one would want to be

sick if they realized just what it meant day after day.

The other thing is can you afford to go on disability? You would have less

expenses, like babysitters, clothes, lunches, gas and car money, and those

sort of things, but that is something you and your husband need to decide.

One thing I can tell you is life does go on even if you become homebound or

disabled and can't work. I actually made it to the Phil concert

last night in Orlando. I had written the group and told them I was afraid

to buy the tickets since I was always letting people down. But at the last

minute I decided I was guaranteeing I would fail if I didn't even try to go,

so we bought enough tickets for all of us. Well the ride on the way was

hell and for some reason my thigh and knee decided to just give me all kinds

of grief. By the time we got to my daughter's apartment I was in tears and

just knew I was going to miss the concert. I figured I would just stay in

her apartment and read. But I rested my leg and elevated it and sure enough

the pain started to go away. I had to use my wheelchair, since I couldn't

have walked all that way but that was ok. We even got better seats that

way, so some good does come from using a wheelchair. So anyway, thinking

positive is the only way to go. Otherwise, it seems like you never can win.

I know it was a big deal to my husband for me to be there and that was worth

the pain alone. So if you decide to stay with you job, approach it like

your going to succeed and the PA is going to go into remission soon. At

least you'll have hope and a positive outlook while waiting for those

changes to occur.

I realize I don't have a great or easy answer to give you. You are in a

tough spot right now and might have to make a big life decision which is

never easy. Just remember that there is good on both sides of the street.

If I hadn't given up my job and working with my husband, I never would have

gotten into my art glass again and now that is my passion. So I do believe

there is a silver lining in most clouds, it's just hard to seem it,

especially when they come in the form of a hurricane...lol.

Take care and write and let me know what happens. They can't fire you for

being ill, but they can make your life at work miserable. You don't deserve

that since you are such a sweet and caring person. Take care and we all

love you. Love, Fran

----Original Message-----

From: janekarsten [mailto:janekarsten@...]

Sent: Wednesday, September 29, 2004 11:30 AM

Subject: [ ] What next??

Hi everyone,

Last week I spoke of increasing problems with PA, and in a message

stated that I'd just dumped ice water on myself by accident...well if

that was only the worst thing that had happened that day. Later, at

the board meeting, we were preparing to review the next fiscal year's

budget, and we distributed the one for the prior year that I had

copied and brought in error...my boss (the director) was

embarassed...I felt like crying (did on the way back). I've been

making so many mistakes at work.

One of my co-workers started a conversation with me as to why I'm not

applying for disability (her husband is disabled with FM). When I

went to apologize to my boss he wasn't very sympathetic. He too asked

why I don't go on disability and just do billing for my husband's

business (does he want me to screw up our business too??!). He told

me that other people are having to pull my weight around here and I'm

unable to do the work in the job description, blah, blah, blah. I'm

not ready for disability, I'm only 44, have children to raise and put

through college. The PA could improve any day now. I don't think

anyone who doesn't have it can understand how some moments you can

feel good and then the next moment fatigue and pain hit you like the

meteor that drops on people in the new migraine med commercial.

So, as a compromise for now, I'm going to be working 5 days a week, 7

hours per day instead of trying to do 4 - 9 hour days. Ususally by 2

p.m on any given day, I'm about ready for the pain meds, heating pad

and recliner, but they frown upon that routine here in the office,

can't imagine why.

To top it off, I had a annual phsyical with my gp and have to see him

again next week due to " everything is elevated " ... blood sugar,

cholesterol, liver panels, etc. The liver panels I don't understand

as the I see the rheumys vampire's every 4-6 weeks and it's all been

normal up to now. In addition, tomorrow I'm having a 24-hour ph

stomach acid test and get to have a tube through my nose to my

stomach. The young ones at home are horrified at the thought of this

test and won't want to be seen in public with me. I've had GERD for

years but looks like all the NSAIDs are doing a number on my stomach.

Wow, what a vent, feel better already being able to write it all down

and send it to this wonderful, compassionate group of people I call

friends. Suggestions, advice and jokes are welcome

Warm blessings,

Jane

[Guest guest]

In a message dated 9/29/2004 1:40:02 PM Eastern Standard Time,

janekarsten@... writes:

I don't go on disability and just do billing for my husband's

business (does he want me to screw up our business too??!). He told

me that other people are having to pull my weight around here and I'm

unable to do the work in the job description, blah, blah, blah. I'm

not ready for disability,

Hi Jane...have you looked into your disability policy at all? I too was

resistant to the idea, but found that I could still work part time...the

disability company just pays me the difference between my current part time

earnings

and my former full time salary...It's really worked out well for me,

physically and financially. I spend my time off taking care of myself

(resting,

exercising, etc) and still feel productive.

Might be worth some investigation, it doesn't have to be all or nothing.

The best part is, I know I am doing a better job when I am at work because I am

managing the fatigue and pain better...

[Guest guest]

No jokes because I understand how you feel, not exactly but sort of. I too have

PA and am 26 i joined this group not too long ago and you are right we are all

friends here. At My job there is a girl that works very closely with me and I

used to try to talk to her about my disease and I thought that she understood,

but today I found out differently. I am a receptionist and she was away from

the switchboard and it started ringing. Well I go to answer it and then I sat

at the switch board until she returned that way I didnt have to dash after the

phone. Well I noticed that she had her mail open on the screen and had been

discussing ME with a friend of hers in human resources. I just felt like crying

because there are some days that I just dont feel good and I dont talk alot.

Well the girl in HR had asked her if I was in a bad mood today and the other

receptionist that I work with said surprisingly no. I try the best that I can

to be kind to everyone. I dont take my disease out on anyone, that is why

sometimes I just want to be quite so I dont make that mistake. I want to ask

her about it but I dont know how because it was on her email i just happened to

look up at the screen and see this.

Also I made the mistake of talking to my manager about my disease, and low

and behold what do they try to force me to do, go on medical leave. I mean I

hurt yes but I am not dead, and it certainly doesnt mean that I cant perform my

job. I think at times like that I try to over do myself and make sure that I

show them that I can do my job and then some, but then I pay for it with pain

the next day cause there is alot of walking, and bending and filing that comes

along with my job.

I could only imagine how it made you feel for your boss much less a coworker to

act that way toward you. I feel for you, and I can certainly empathize with

you. I like you and any other human being make mistakes at my job too and

usually get jumped on, but no one is perfect. Sometimes I wish that they could

just put themselves in our shoes and have to live in pain everyday like we do,

then maybe they could understand what we go through, but on the other hand I

would not wish this on anyone. I know that this may not have made you feel any

better, but I hope just the understanding helped. Email anytime.

Anne

[ ] What next??

Hi everyone,

Last week I spoke of increasing problems with PA, and in a message

stated that I'd just dumped ice water on myself by accident...well if

that was only the worst thing that had happened that day. Later, at

the board meeting, we were preparing to review the next fiscal year's

budget, and we distributed the one for the prior year that I had

copied and brought in error...my boss (the director) was

embarassed...I felt like crying (did on the way back). I've been

making so many mistakes at work.

One of my co-workers started a conversation with me as to why I'm not

applying for disability (her husband is disabled with FM). When I

went to apologize to my boss he wasn't very sympathetic. He too asked

why I don't go on disability and just do billing for my husband's

business (does he want me to screw up our business too??!). He told

me that other people are having to pull my weight around here and I'm

unable to do the work in the job description, blah, blah, blah. I'm

not ready for disability, I'm only 44, have children to raise and put

through college. The PA could improve any day now. I don't think

anyone who doesn't have it can understand how some moments you can

feel good and then the next moment fatigue and pain hit you like the

meteor that drops on people in the new migraine med commercial.

So, as a compromise for now, I'm going to be working 5 days a week, 7

hours per day instead of trying to do 4 - 9 hour days. Ususally by 2

p.m on any given day, I'm about ready for the pain meds, heating pad

and recliner, but they frown upon that routine here in the office,

can't imagine why.

To top it off, I had a annual phsyical with my gp and have to see him

again next week due to " everything is elevated " ... blood sugar,

cholesterol, liver panels, etc. The liver panels I don't understand

as the I see the rheumys vampire's every 4-6 weeks and it's all been

normal up to now. In addition, tomorrow I'm having a 24-hour ph

stomach acid test and get to have a tube through my nose to my

stomach. The young ones at home are horrified at the thought of this

test and won't want to be seen in public with me. I've had GERD for

years but looks like all the NSAIDs are doing a number on my stomach.

Wow, what a vent, feel better already being able to write it all down

and send it to this wonderful, compassionate group of people I call

friends. Suggestions, advice and jokes are welcome

Warm blessings,

Jane

[Guest guest]

Hi Jane,

I don't have any good jokes but from the way your posting

read.....I'm sure you do. You really made me laugh...you have a

very dry sarcastic sense of humor.......I LOVE it. It helps when

dealing with PA !

> Hi everyone,

>

> Last week I spoke of increasing problems with PA, and in a message

> stated that I'd just dumped ice water on myself by accident...well

if

> that was only the worst thing that had happened that day. Later,

at

> the board meeting, we were preparing to review the next fiscal

year's

> budget, and we distributed the one for the prior year that I had

> copied and brought in error...my boss (the director) was

> embarassed...I felt like crying (did on the way back). I've been

> making so many mistakes at work.

>

> One of my co-workers started a conversation with me as to why I'm

not

> applying for disability (her husband is disabled with FM). When I

> went to apologize to my boss he wasn't very sympathetic. He too

asked

> why I don't go on disability and just do billing for my husband's

> business (does he want me to screw up our business too??!). He

told

> me that other people are having to pull my weight around here and

I'm

> unable to do the work in the job description, blah, blah, blah.

I'm

> not ready for disability, I'm only 44, have children to raise and

put

> through college. The PA could improve any day now. I don't think

> anyone who doesn't have it can understand how some moments you can

> feel good and then the next moment fatigue and pain hit you like

the

> meteor that drops on people in the new migraine med commercial.

>

> So, as a compromise for now, I'm going to be working 5 days a

week, 7

> hours per day instead of trying to do 4 - 9 hour days. Ususally by

2

> p.m on any given day, I'm about ready for the pain meds, heating

pad

> and recliner, but they frown upon that routine here in the office,

> can't imagine why.

>

> To top it off, I had a annual phsyical with my gp and have to see

him

> again next week due to " everything is elevated " ... blood sugar,

> cholesterol, liver panels, etc. The liver panels I don't

understand

> as the I see the rheumys vampire's every 4-6 weeks and it's all

been

> normal up to now. In addition, tomorrow I'm having a 24-hour ph

> stomach acid test and get to have a tube through my nose to my

> stomach. The young ones at home are horrified at the thought of

this

> test and won't want to be seen in public with me. I've had GERD

for

> years but looks like all the NSAIDs are doing a number on my

stomach.

>

> Wow, what a vent, feel better already being able to write it all

down

> and send it to this wonderful, compassionate group of people I

call

> friends. Suggestions, advice and jokes are welcome

>

> Warm blessings,

> Jane

[Guest guest]

Jane, you didn't ask for hugs but I am sending a huge one your way. I am in

the same boat you are concerning work. I get so exhausted I can't think.

I'm alright if I can just sit at my desk and push paper but when it gets

hectic I struggle. I know I won't be able to work for very much longer

eventhough I'd like to go another 5 years. I keep thinking about something

I saw once about learning to empathize with the elderly. It had to do with

having all the young people wear fuzzy glasses and gloves to do their work

It gives people a little insight into those who are struggling. Too bad

there isn't anything like that for the brain........maybe they should all

try working really drunk........I'm babbling now so, good night and hang in

there. Cheri

[ ] What next??

> Wow, what a vent, feel better already being able to write it all down

> and send it to this wonderful, compassionate group of people I call

> friends. Suggestions, advice and jokes are welcome

>

> Warm blessings,

> Jane

>

[Guest guest]

Hi ,

Just something I wanted to ask. I am currently receiving LTD from my

employers insurance which on the face of it would appear to be much the same

deal as

you are on. You say that you are working part time and the insurance pays

the difference. Are you still working for the same employers or is it a

completely different job?

Thanks,

[Guest guest]

In a message dated 9/30/2004 1:16:12 PM Eastern Standard Time,

martincoyless@... writes:

Just something I wanted to ask. I am currently receiving LTD from my

employers insurance which on the face of it would appear to be much the same

deal as

you are on. You say that you are working part time and the insurance pays

the difference. Are you still working for the same employers or is it a

completely different job?

Hi , it is the same employer, but I did not go back as an employee, I

went back as a consultant. I set up a corporation that I " work " for, which

means the corporation pays my benefits, employment taxes, etc, and then pays me

a salary. The corporation bills the company I consult for. I then share

my paycheck stubs with the LTD company, and they pay me the difference, up to

100% of my prior salary.. The total that they were willing to pay me if I

chose not to work was 66% of my prior salary, the total that they are willing

to pay me if I work p/t is 72%, so I get a bonus! Sounds kind of complicated,

but its actually worked out great...The best thing is that my hours are

flexible, and because I bill my former employer on an hourly basis, if I don't

feel good, I just don't work. The LTD company loves me and doesn't really

question me because I am one of the few that chooses to work PT rather than not

at all...My LTD company (Liberty Mutual) calls it " partial disability " , and

only required that the doctor approve my ability to work part time. I did have

to do a lot of research before I realized this was possible, they don't

really inform people about it...

For me, its a great way to stay productive but still be able to take care of

myself...I don't work Tues/Thurs, so I always have a day to rest right after

working. My old company loves it, because they can move me around as needed

and I know the ins and outs of the company. And its been great because I

have learned a lot by moving around between departments. I do a lot of

" special

projects " that full time people don't have time to do...

Anyway, sorry to babble on, but you can tell I am thrilled with how things

are going...I have been doing this for 6 months now and you wouldn't believe

the day to day improvement in my health. Just having those extra days to rest,

get the exercise I need, spread the " errand " part of my life out over more

days...

I am only 35 and single and the thought of not working at all was very scary

to me. And if someday they find a " cure " or some medication I can take (I

can't take the biologics), then I still have the contacts to go back to work

full time.

Take care,

[Guest guest]

In a message dated 10/1/2004 5:22:42 AM Central Daylight Time,

rachelviognier@... writes:

I set up a corporation that I " work " for, which

means the corporation pays my benefits, employment taxes, etc, and then pays

me

a salary.

Very smart , but I am still attempting to understand it. Basically you

" own " your own business and you pay the fee to call it a corporation? Right?

So really, you pay your benefits out of your salary through the corporation

and it can be a tax write off? Trying to get this down pat... you pay yourself

and all of your needs through the corporation. Who writes your check? Do you

write your own paycheck and sign it from your corporation?

How long is your LTD for? When will it expire?

You really know when to take time for you... I need to work on that. I think

I could be crawling into work and I would somehow ignore it and convince

myself that I am fine. I need to really pay attention to my bodies needs.

Another question... what if your company decided they don't need you anymore? A

company can't terminate your LTD benefit due to a disability, right? Can you

tell I have never really checked into this stuff. I understand the corporation

part of this more than the LTD part. Did you ever feel really guilty going on

LTD? I am not saying you should... trust me, I would never say that. I just

know I would feel like if I can't work they shouldn't have to pay me. Yes, I

know it doesn't work that way... just the way my head works. Thank God there

are options like the one you have taken and I am going to check into my

benefits on Monday, just in case I ever need it!

[Guest guest]

-Hi Anne,

It must have been really hard for you to deal with this !!! I hope

you are able to find a resolution to your difficulty - I work myself

and have been fortunate in that I am able to juggle things around a

fair bit to work in with good days and bad - I don't really talk too

much about the PA because I don't think either of my bosses would

understand nor do they really want to know the inns and outs -

however they do understand enough to give me some space on the days

that I'm not too good.

I want to keep working as I think it is good to keep the mind

occupied and not allow it to wander too much.

Anyway just wanted to say how sorry I was to read your email and to

let you know that I hope things improve for you

Sue from Australia

, " Anne and " <syres2@e...>

wrote:

> No jokes because I understand how you feel, not exactly but sort

of. I too have PA and am 26 i joined this group not too long ago and

you are right we are all friends here. At My job there is a girl

that works very closely with me and I used to try to talk to her

about my disease and I thought that she understood, but today I found

out differently. I am a receptionist and she was away from the

switchboard and it started ringing. Well I go to answer it and then

I sat at the switch board until she returned that way I didnt have to

dash after the phone. Well I noticed that she had her mail open on

the screen and had been discussing ME with a friend of hers in human

resources. I just felt like crying because there are some days that

I just dont feel good and I dont talk alot. Well the girl in HR had

asked her if I was in a bad mood today and the other receptionist

that I work with said surprisingly no. I try the best that I can to

be kind to everyone. I dont take my disease out on anyone, that is

why sometimes I just want to be quite so I dont make that mistake. I

want to ask her about it but I dont know how because it was on her

email i just happened to look up at the screen and see this.

> Also I made the mistake of talking to my manager about my

disease, and low and behold what do they try to force me to do, go on

medical leave. I mean I hurt yes but I am not dead, and it certainly

doesnt mean that I cant perform my job. I think at times like that I

try to over do myself and make sure that I show them that I can do my

job and then some, but then I pay for it with pain the next day cause

there is alot of walking, and bending and filing that comes along

with my job.

>

> I could only imagine how it made you feel for your boss much less a

coworker to act that way toward you. I feel for you, and I can

certainly empathize with you. I like you and any other human being

make mistakes at my job too and usually get jumped on, but no one is

perfect. Sometimes I wish that they could just put themselves in our

shoes and have to live in pain everyday like we do, then maybe they

could understand what we go through, but on the other hand I would

not wish this on anyone. I know that this may not have made you feel

any better, but I hope just the understanding helped. Email anytime.

>

> Anne

[Guest guest]

Hi Anne,

I am just sort of catching up with the mail now. I know you sent this a few

days back but this is the first chance in two or three days that I have had to

answer any, so apologies for the delay.

I just wanted to say that what you and Jane went through made me think a

bit. I am saying that everyone has been great with me at work but i suppose you

don't usually know what is being said behind your back.

Having said that I prefer to see the best in people so hopefully the backup

I was getting was genuine.

Take care,

[Guest guest]

In a message dated 9/30/04 11:25:30 AM GMT Daylight Time,

cdyost@... writes:

Too bad

there isn't anything like that for the brain........maybe they should all

try working really drunk........I'm babbling now so, good night and hang in

there. Cheri

Actually Cheri, if they start allowing people to work while they are really

drunk, I might try and go back to work. Lol

[Guest guest]

Hi ,

Thanks for the answer. Sorry that it has taken me so long to get back to

you.

That's great that you are doing so well in your new job. I hope it keeps

going like that for you. You deserve good things to happen to you sometimes (Why

not all of the time? Lol)

I also get 66% of my original wage but they then subtract twice the Irish

disability benefit. ( Which I don't actually receive as I'm not even in Ireland

any more. Lol) When I was asked why it was twice, they said it was to

" encourage " you to go back to work if possible which is ok if you can go back

eventually but the thing is, even if I was to improve dramatically, I still

would

not to do my own job due to the condition this disease has left my hands and

wrists in.

My insurance states that it will pay me the 66% or make up the difference

between my original pay and what I would earn if I were to get another job but

it doesn't tell me anything about what would happen if the new job was with

some other company. Would I still have ties to my original employers? Both

myself and my employers are still paying into their pension scheme. Would that

stop too? I tried to find out what the situation would be but I hit a brick

wall. I even asked them for the number of their insurers so I could contact

them

personally but they said that any queries' should be put to them and they

would contact the insurers if necessary.

So that is why I was interested in your situation as it is very similar in

many ways. thanks again for the reply.

Take care,

[Guest guest]

In a message dated 10/2/2004 7:06:35 AM Eastern Standard Time,

pookiegut@... writes:

Very smart , but I am still attempting to understand it. Basically

you

" own " your own business and you pay the fee to call it a corporation? Right?

So really, you pay your benefits out of your salary through the corporation

and it can be a tax write off? Trying to get this down pat... you pay

yourself

and all of your needs through the corporation. Who writes your check? Do

you

write your own paycheck and sign it from your corporation?

How long is your LTD for? When will it expire?

You really know when to take time for you... I need to work on that. I

think

I could be crawling into work and I would somehow ignore it and convince

myself that I am fine. I need to really pay attention to my bodies needs.

Another question... what if your company decided they don't need you

anymore? A

company can't terminate your LTD benefit due to a disability, right? Can you

tell I have never really checked into this stuff. I understand the

corporation

part of this more than the LTD part. Did you ever feel really guilty going

on

LTD?

Hi ,

Each LTD policy is different, so you really need to check into what your

policy says...for me, I am on for 30 months and then get re-evaluated, but they

make their decisions based on the doctor's recommendation so I am not worried.

Technically, it should go until I am retirement age, and I am eligible for

the company insurance as long as I am covered by LTD. I set the company up to

so that I can get to my pre LTD earnings...most people would have set up an

LLC or sole proprietorship to avoid double taxation, but with the c corp I

can keep my earnings consistent and keep the LTD amount consistent despite what

I bill (when I don't fee great, I don't work as much and bill less)...any

" extra " money I earn is held by the corporation, so if I have a bad month

health wise, I can still pay my salary in addition to the LTD benefit.

As for guilt, I felt terrible when I first starting thinking about it, but I

went through the experience of taking short term leave, getting a whole lot

better, then going back to work and getting worse again. So for me, I know I

am healthier when I have the right amount of rest and exercise, and working a

55-60 hour week was just too much for me...I don't feel guilty now because I

work as much as I can (usually about 25 hours a week) AND I know I am taking

care of myself and doing the right things to manage the disease...Mentally,

it was a big change for me, I was about to become a vice president in a

company that I loved, but I realized I would be miserable and probably unable

to

do that job long term. I haven't regretted the decision once. It's amazing

how just feeling better can change your priorities.

Anyway, feel free to email me direct if you want to know more of the details

as to how I set everything up...

[Guest guest]

In a message dated 10/5/2004 8:28:20 AM Eastern Standard Time,

martincoyless@... writes:

My insurance states that it will pay me the 66% or make up the difference

between my original pay and what I would earn if I were to get another job

but

it doesn't tell me anything about what would happen if the new job was with

some other company. Would I still have ties to my original employers?

Hi , unfortunately the only ways I got the answers was to talk to the

insurance co...but as of now, it is technically a different company that is

employing me than the original (because it is my consulting firm), and the ties

that I have to my original employer are binding as long as I am on

disability. I am on disability as long as I only work PT and make less than my

original salary. I know, its clear as mud. But there is definitely

satisfaction

in working PT if you can!

[Guest guest]

Thanks ,

I might try contacting the insurers again.

Take care,

[Guest guest]

Jen, don't give up! Humira may very well work for you, or some combo

of it with something else, or there's still Remicaide to try, and

maybe other stuff. Also, they are working on more new drugs for

inflammatory arthritis.

Yes, PA moves around for most of us - your story sounds familiar.

Also, most people seem to have to try new drugs and new combos over

time; it's typical for things to stop being as effective over time.

Don't panic - work with your doctor and I'm sure you'll get relief.

best regards,

sherry z

>

> I have had PA for about 3 and a half years. They say in some of my

> joints it is chronic. In this time it has moved around? It started

> in my left knee, which was chronic, then went to my left ankle, for

> awhile in both then knee became secondary. They fused the ankle and

> scraped the knee, now I have hardly any pain in either. But now has

> spread first to my right wrist and is also now in the left wrist.

>

> I have been on MTX since diagnosed, but had to cut my dose into only

> 3 per week due to high liver counts. They have had me on and off of

> predisone and also the shots. Caught TB in the ER and had to be

> treated for 12 months of meds for that before starting on enbrel.

>

> Have been on Enbrel a year and a half. It was a miricle at first and

> I seemed to go into remission, now everytime I take it I get an

> infection, either sinus, upper resperatory, or urinary tract.

>

> They have also had me on a slew of different anti inflammitories,

> none of which seem to help other than good old Ibiprophen

> (sometimes).

>

> Now they have me on Plaquinel also, which is leaving me with nausua

> along with a few other unwanted side effects.

>

> Rhumy says I'm a tough case and may want to try Humira? But aren't

> all of those kind of the same?? When I get an infection I can just

> stop the enbrel as it only stays a week (if that), where don't the

> others stay longer???

>

> I am now also having ALOT of back pain, can you have PA in your

> back???

>

> I'm so frustrated!!! Does anyone else have a case so complicated as

> mine????

>

> JenP

> MA

>

> [Editor's Note: No one knows if Humira will work for you, however,

it is NOT the same chemical formula as Enbrel. Some people have

great results on both, some on one but not the other and some on

neither. The only way to know if it will work for you is to try it.

Humira is a wonder drug for some people who did not have good results

on Enbrel and vice versa. Kathy F.]

>