Re: Work?

[Guest guest]

Hi Karin,

When I worked in the Social Security office, I would wrap my legs in

elastic bandages, wear pants and drag myself to work during EN flare

ups. I am not too sure I was doing the smart thing, though. Some of

the literature on EN states that being on your feet can make the flare

take longer to resolve, and may lead to chronic EN. If I had the

luxury of time off, I would definately take it, especially if the

lumps were accompanied with other EN sumptoms like joint pain, or malaise.

Love,

idiopathic EN '68

[Guest guest]

Hello Karin,

I was very blessed to have had good coverage when my EN was active and was off work for two months. Anyhow wanted to say even working in an office I remember how bad my legs would hurt to even try to take a few min. on the computer. To this day sometimes my legs will still hurt to sit at the computer, especially the right leg. My legs won't swell much all week, but on the weekends if I don't move about enough they will swell up. And I've always have felt since coming down with EN which was because I have sarcoidosis I feel my mind just isn't what it use to be. My middle son sometimes tells me I'm a grumpy old lady now. I'm not grumpy all the time, but I think he see's it that way because I use to always be so easy going, now I'll tell you, you are stepping on my toes lol. Anyhow hope you feel well soon, I just wanted to let you know I know how you feel. I think only the ones of that suffer with these diease's can relate to eachother.

Shelia

[Guest guest]

>

> Hello Karin,

>

> I was very blessed to have had good coverage when my EN was

active and was

> off work for two months. Anyhow wanted to say even working in an

office I

> remember how bad my legs would hurt to even try to take a few

min. on the

> computer. To this day sometimes my legs will still hurt to sit at

the computer,

> especially the right leg. My legs won't swell much all week, but

on the weekends

> if I don't move about enough they will swell up. And I've always

have felt

> since coming down with EN which was because I have sarcoidosis I

feel my mind

> just isn't what it use to be. My middle son sometimes tells me

I'm a grumpy

> old lady now. I'm not grumpy all the time, but I think he see's

it that way

> because I use to always be so easy going, now I'll tell you, you

are stepping on

> my toes lol. Anyhow hope you feel well soon, I just wanted to

let you know

> I know how you feel. I think only the ones of that suffer with

these diease's

> can relate to eachother.

>

> Shelia

>

Thanks Sheila for your reply!

It's not nice feeling like an old grumpy lady! :-) I feel that I am

complaining a lot when having EN, I guess I just want people to feel

a bit sorry for me... :-)

I haven't been to work for 2 weeks now, and my doctor told me to

stay at home for 1 or 2 more weeks. I guess we are lucky in Sweden

in that way, because thanks to the high taxes you can stay at home

if you are sick and get 80% of your salary. If I didn't I don't know

if I could stay at home, propably not.

I just added a few photos of my legs that are one week old. I was

really aching, and my feet were really swollen. I went to the doctor

on Monday, and they thought it looked bad enough to give me cortison

(Prednisolon) and it only took a few hours for the swelling to go

down and the ache to disappear! Wow!

I am still really tired, and I think I might have fever every now

and then, but it doesn't hurt and I can wear my shoes again! :-)

[Guest guest]

Hello Karin,

When I was diagnosed the emergency room doc said he was going to order me 10 days bedrest. Which at that point bedrest sounded totally like heaven. Anyhow after all the tests were done he said it appeared to be sarcoidosis. I asked him do I still get my 10 days bedrest. All I did that first week was sleep. I would try to watch tv but I would end up just sleeping. I'm able now to get around but some days I wish I could have that bedrest back again. All of my EN lumps have gone away as far as I can tell but my legs still have that heavy feeling and I still get so fatigued by the end of the day. I've recently found some over the counter arthritis pain reliver that I take before work just to get through the work day. Its weird cause some days I feel almost normal then I'm slammed down again.

I don't really think we tell people about hurting cause we want people to feel sorry for us, but more the case that we need them to acknowledge our pain even if we do look healthy.

Its weird for me cause me feet don't seem to swell up during the work week just on the weekends. And oh man I can remember the discomfort of trying to get my feet back into day to day shoes.

I hope you feel better soon.

Shelia

EN/sarcoidosis aug/2005

[Guest guest]

Bedrest - unfortunately does me no good. I can't sleep. I can be completely exhausted and not be able to sleep. And even just staying in bed - as soon as I get up, I swell. I think we're in so much pain so often, we learn to deal with it and hold it in. Because of that, if I even utter a gasp, my husband knows I'm in pain. It was so bad Wednesday night, I cried myself to sleep. My husband put ice up and down my leg and just the weight of the ice on my leg was killing me. It took some of the swelling down, but nothing like it should've. I try to hide my legs/ankles because I don't like to answer questions from people - I have no answers myself. But sometimes, I limp so badly and it swells so badly I have to take my shoes off. My issue is I try to hard to keep my emotions in (the tears, etc.) that if too many people "poor you" me, then the dam breaks and the tears flow and I'm afraid it won't stop. People have no idea what kind of pain we're really in. My mother can take a lot of pain - she's very strong, but she thinks I'm a baby because of how much I rely on Advil for the pain. If she only knew . . . . And my poor husband has to pick up the slack so much for household chores, making dinner, doing the laundry because I just can't walk sometimes. This flare-up is even causing cramping in my hips. My body feels so tired. I'm not trying to have a pity party, I just needed to tell people that understand - I need to vent. I hope you all feel better than me.

Tawnya, IdioEN '97

[Guest guest]

I am a 911 dispatcher and I work 12 hr shifts. I find that when I am

having a lot of EN my legs are more swollen because they are hanging

down from a chair all damn day! Its quite painful. Now that I know

that I have EN (first told me it was Sarc) next time it flares up Im

taking advantage of the hrs and hrs of sick time I have banked and

Im gonna rest. I think my EN was caused by birth control pills,

which I am now off of (getting married in 19 days, taking my

chances! haha) so I havent had a flare up (knocking on wood) in

about 2 mos now. I hope its over. Anyway working with the extreme

pain in the legs is awful. Dont do it ,if u dont have to!

>

> Hi all!

>

> I just wanted to ask you all if you are able to go to work when

you

> have EN?

>

> I have been home from work (I work in an office) for a few days

now. I

> guess my brain is working fine, but my legs hurt!

>

> Take care!

>

> Love,

> Karin

>

[Guest guest]

Hi, I am working full time - used to work 45 hours a week but recently cut back to 32 hours / Fridays off. I wouldn't be able to do this without my husband. I was finding that the 45 hour work week, I was having random fever / fluish symptoms much more. I mostly sit at a desk, but I go to meetings and to job sites as well. I do feel stiff so I get up and walk around, sometimes I go in the restroom and stretch. My office bought me one of those foot rests and mine rotates a bit based upon me shifting around when I sit at my desk. That helped a lot. I also try to do yoga which helps the joint pain. Can you split up your shifts? That is a long time to be sitting. Louise EN-Sarc. 1976Thats 10-35 wrote: I am a 911 dispatcher and I work 12 hr shifts. I find that when I am having a lot of EN my legs are more swollen because they are hanging down from a chair all damn day! Its quite painful. Now that I know that I have EN (first told me it was Sarc) next time it flares up Im taking advantage of the hrs and hrs of sick time I have banked and Im gonna rest. I think my EN was caused by birth control pills, which I am now off of (getting married in 19 days, taking my chances! haha) so I havent had a flare up (knocking on wood) in about 2 mos now. I hope its over. Anyway working with the extreme pain in the legs is awful. Dont do it

,if u dont have to!>> Hi all! > > I just wanted to ask you all if you are able to go to work when you > have EN?> > I have been home from work (I work in an office) for a few days now. I > guess my brain is working fine, but my legs hurt!> > Take care!> > Love, > Karin>

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[Guest guest]

Hello Everyone!

It all sound very bad and familiar. I had EN in April and I haven't been working

for two

months!! After that I started working only in the afternoons and since half

june I'm in full

effect again. Problem is though, that whenever it is getting warmer my left leg

is beginning to

swell again. In the Netherlands it is not hot that often and I'm quite happy

about that

concerning EN. But as someone said. in the weekends her legs get tired and

swollen. Mine do

to. I am working as a social therapist in a activitycentre and really I walk all

day long and in

the weekend it looks like all the tension which you keep in during the week

because you want

to proceed, falls of and gets into your legs. Maybe it is psychosomatic or so.

At least I think

so.

Love Yen