When did you stop working

[Meredith]

Just not feeling well today - heading to the doctor at 2:00. When did you come to the decision to stop working. I love my job but today all I want to do is go to bed. I am 56 and hoped to work until I am 67.

[pberggren1]

I'm 36 now and had to quit working my part time job over 3 years ago. I have not had any gainful employment since I first got sick with Wegs 10 years ago.

[Hammy8241]

Just not feeling well today - heading to the doctor at 2:00. When did you come to the decision to stop working. I love my job but today all I want to do is go to bed. I am 56 and hoped to work until I am 67.

Trouble with Wg is the roller coster effect. Some time/days feeling ok , others,s***! Have you talked to your bosses about the illness and how it affects you? You may be able to agree to adjusting your hours or going part-time. IMO, going to work is something to continue with as long as you can.

[Psyborg]

I think this varies pretty wildly. Some folks are never able to get and stay in remission. I imagine for them working is a constant struggle, if they are able to do it at all.

Other people are able to get into remission and thus continue to work with no problems. I've had a few flares, but the nature of my work (IT) and my involvment allows me to work. I will agree with Hammy though, some days I really don't feel like working ;)

[aewaustin]

I agree with Bob. When I went through chemo I worked 3 days a week for two months and then went to 4 days and then back up to 5. But I also worked from home and know that I would have had to take a leave of absence for probably six months if had not been working from home. Sitting was ok, but getting ready and going to an office would have been rough.

Also I am not sure of your history with Wegs, but it does get better. "This too shall pass" is my motto and it is true. So even when it looks bad know that you will get to a place where it is better. But do take care of yourself and know what you need to do for now until you get to that point. Both times I have had episodes (20 years apart) it basically took me two years from start to mostly remission for what it is worth.

Anna

[crackers]

i haven't worked since feb 2007,when i was diagnosed.after spending a month in hospital i asked my rheumy when i would be able to resume work,she gave me a look and said "let's just wait and see on that one".i'm still waiting.
john

[drz]

I was partially retired when i got sick with Wegs and decided to fully retire cause I was too ill to work in any dependable fashion. I was finally diagnosed three months later and know I could never have maintained any work since my diagnosis. I was in-patient or in recovery rehab for about first six months. I admire those of you strong enough to work but don't envy those who feel they have to work as I know I could never do it.

[mishb]

I work full time, five days a week. On a train at 7am and home just after 7.00pm
Start to get very tired by Fridays so on the weekend I sleep the mornings away and basically don't do much else after that for the rest of the day.
Then it starts all over again on Mondays.
I work in an office, sitting at a computer all day so it is not a physically demanding job, just mentally draining.

My heart goes out to those who are unable to work but need too. Unfortunately, money plays a massive part in the need to work issue :sad:

[Jaha]

It all really depends, like others on here have said. I was self-employed and had been for 13years, worked at home and in various client's offices long hours. I started getting sick in Nov 2009, wasn't dx'd until Sept 2010 after lung surgery and multiple hospital stays and all kinds of opinions from various drs, have never achieved remission with all the different combination of drugs. I am 54 and finally had to make a decison to close up my business and concentrate on my health in Aug. of this past year. I got so that it wore me out just getting ready to go to a clients office and if I did I could not stay very long before it got dangerous for me to drive home. I also found that I didn't even have the strength to sit at a computer for very long periods, so working from home wasn't feesible either. It very hard on my ego to let go of working,but I guess that after 37 years of the grind and all the stress of different jobs, I know it was the right choice for me. Good luck to you and any decision you will make for your own self persevervation.

[Pete]

I was retired for nine months when I was diagnosed. It was right after we moved to Hilliard. I had thought I would look for some sort of volunteer work and take a few courses at Ohio State. I did start a course at OSU last winter, but had to drop it when I had a flare that put me out of commission for about six weeks.

Now, my major effort is helping my wife provide daycare for our 15-month old grandson. Will start thinking about possibilities again next fall.

[jola57]

I have worked thru my wegs but only because i own my business and have other staff to carry on. I found that if I stayed home until 11 am then went to work, I could stay until 6 or even 9pm if I had a meeting, and I was fine. I work behind a computer with walking back and forth to the printer. I have one in my office but elected to use one at the back just so that I have to walk ( I make about 20 round trips so I'm happy) it doesn't compare to working for an employer, if I am feeling bad, I just pack up and go, I can't imagine doing that if I was employed. I am so very, very lucky.

[HopeinTN]

I fall into the group of not working isn't an option. However, I'm blessed that I still can and love keeping busy and not thinking about this disease. I'm 40, single and own my home and can't imagine life without a paycheck or health insurance. Worst case, I sell the house and go from there. Very scary thought though.

[Meredith]

I actually lost my job 5 years ago when I was first diagnosed with WG. Had been sick 9 months with WG's and they knew what I had because there was no way to hide it. They of course said it was a slow down in business but I knew better. Immediately got another job which I believe God found for me, unbelievable insurance/boss. No I have not told them I am sick, feel guilty sometimes but I will know when the time is OK to tell and I have missed a lot of work. I only work 1/2 a day on Fridays so thats when I go to all my doctors and have the infusions. They do not have sick days here - just bring a doctor note and no problem. I was use to the normal 40 yours per year. I went thru 120 hours (which is all you were allowed to bank at my old job) in 3 months.

[julia]

Did not work for 2 years after diag.Went back to work 1.5 yrs ago. I am able to leave when they are not busy. I can take time off for Dr appt. if I give advance notice or just leave early if we are not busy.
I do customer service, I am reluctant to apply for other positions because the customer service dept seems to be the only dept that is this flexible in slow times. My husbands work provides our health
insurance so I do not have to worry about that. I now have short and long term disability insurance which I did not have at my prev job. When we are busy I do work 40 hr weeks. I can handle it but have to rest most of the weekend. I am 51 and plan/hope to work until retirement age.

[Sangye]

I've never been able to work since being dx'ed. Thankfully I was guided to apply for disability right away, which I got after about 5 months.

[annekat]

I've continued to work at my self-employed pottery business, plus some seasonal work every winter in the plant products industry. But Wegs has taken its toll and I must really pace myself, and luckily, these work situations are flexible that way. The downside is the difficulty of making a living. I was lucky and got SS disability quite easily. Because I was making so little money on my pottery business, and had been for years, and they acknowledged that I'd actually had Wegs for some of those years, even though un-dx'ed, they didn't consider me to have really been "working" for quite awhile. My income level fell below what they consider to be work. So, the monthly disability payment helps a lot, but since I never had paid a lot into the system, it is a relatively small one, and it is still a struggle to get by. I have some ideas for making my business more efficient and getting more out of my resources.

[RudiK]

I was diagnosed 2 months after I retired, so I don't have to worry about work any more. But, having worked in a very stressful IT management job for 30+ years, I would have not been able to continue work after the diagnosis. Insurance-wise, I'm now on Medicare and so far so good, although one of my doctors have warned me that Medicare is cutting the re-imbursment and that she may have to bill me for some of the difference. While the WG didn't impact my work, it did put all of our travel plans on hold. Hopefully, we will do some travel this year and next.

[Randy]

I work full time and have done so except for about the first 6 months after I got out of the hospital. I work at a computer help desk, it's not physically demanding but is menatlly, and can be emotionally, like when I get someone who figures I should have fixed their problem yesterday. These people never used to bother me, but now they do. The WG is in remission but I think it has had a permanent effect on my nerves. Other than that, I like my job and intend to keep working at it as long as I can. A. I need the money and; B. It gets me out in contact with the rest of the world.