How has Weg's affected you working/going back to work?

[TOBEY32]

These "Threads" I send out are questions I have as I move forward in this (diagnosed 02/2011).

1. If working prior to diagnoses were you able to continue/return to work?
2. Doing the same thing?
3. How soon after diagnoses?
4. Did you have any trouble (if not previously employed) getting Weg's covered by a company's insurance?
5. Did period(s) of unemployment come up in your interviews? Did you bring up Weg's itself (I don't wanna seem like a "liability" to a potential new employer)?

Waiting to hear back re Disability. Don't know what to expect or if it will take an appeal. Didn't really wanna go that route - my goal being to return to as normal a life as possible.
Thanks for any info...David

[Jack]

In the first few years I had a great deal of time off sick, but as a long term employee this was not a problem and I was paid in full. I relocated within the company to a very similar job, but with fewer physical demands and continued without anything more than a fairly poor sickness absence record for the next 15 years. I turned down job offers that were made in order to keep the job satisfaction level up and the stress level down! It paid fairly well anyway so that was not an issue.

In the last few years I started to struggle and ended with a 2 year sickness absence followed by retirement on grounds of ill health with a good pension. My problems now are mainly related to steroid side effects.

Health insurance is not required here so that was never a problem.

[pberggren1]

The answers to these questions will vary greatly form member to member. But I think most have not been able to return to work or at least any type of gainfull employment.

1. I was able to return to work twice and go back to school twice but flared all 4 times and was able to go no longer working or schooling than 3 months.

2. I have not worked now for almost 18 months.

3. I worked after being dx about 6 weeks after getting out of hospital. It was part time at a water treatment plant, about 15 to 30 hours a week. Lasted about 5 months, then had to quit, getting too tired.

4. I have never had insurance and never really needed it. I live in Canada and have medi care.

5. I have brought up Wegs to other employers. I think it is only fair to let them know but I think if I was doing well and looked good then I might try and find work again and maybe not even mention Wegs. But I have no hearing at all and am waiting to see the cochlear implant surgeon to see if I can get the implants.

I have had a hard time over the last 8+ years adjusting to the new normal.

[Sangye]

I had my own chiropractic practice before I was dx'ed. For the year prior to my dx I continued working but was in increasingly terrible shape. Looking back now I don't know how I did it. I was in excruciating pain the whole time and my lungs were hemorrhaging for a full 3 months before winding up in the ICU. I haven't been able to work since (that was June, 2006). I've had a lot of complications, refractory Wegs (ie, unresponsive to treatment until rtx) and a lot of damage.

I have no idea if I can work again, much less as a chiropractor. My adrenals don't seem to function well and can't handle stress. The illness and the pred have really affected my cognitive abilities, too. I also don't know how I could run a practice again with the uncertainty of Wegs. It's not like you can just tell your patients you'll be back in a few months. It's a physically and mentally demanding job, and patients deserve a physician who is strong, healthy and reliable. As a chiropractor I'd have to find private insurance but given my history, I don't see how an insurance company would ever cover me at any price.

Still, even with all of the above I keep my mind open as best as I can. I don't know what the future brings.

[mishb]

I have had symptoms for quite a few years but finally diagnosed in Sept 2010 with WG.
I have worked for the same Insurance Company for 22 years and up to 2009 had not taken any sick days (maybe one or two), so have over a years worth available to me now .. on full pay. I was in hospital for 4 days after diagnosis and so far have had about 10 days off work.
I used to drive into work (about 45 minutes drive) and the days where the joint pain was too bad, my daughter would drive (she also works for the same Company).
Two months ago our worked moved into Melbourne City which, at peak time, the drive would be about 2 hours from where we live, therefore we now catch a train which takes just over an hour each way. Our Employer is excellent and would allow me to take as much time off as needed, and I guess if worse comes to worst, I could do some work from home and my daughter could take it in each day. With medication I seem to be managing very well and 'touch wood' it all stays that way.... a little nap on the train at night time doesn't hurt anyone either

[delorisdoe]

I worked full time prior to diagnosis. It was to date the hardest thing I have ever done-except for maybe eating brussel sprouts. Once I was diagnosed and put on 100mg of prednisone and cytoxan I felt better than I had for 2 years so not working seemed pointless. I was working 4 days on and 4 days off mind you so I did have alot of time to recouperate.

I am a stubborn person and I rarely miss work for illness. Work is what I do and it is what I know and it makes me feel complete and is good for my mind and my soul. I have found that this time around and being 10 years older and working 30 more hours a week than I did the first time it is alot more difficult.

as far as telling your future employer about your illness that is a hard one. As an employer myself large gaps are a deterent sometimes and a past illness is a red flag. I have stayed at my job for so long because they #1 are decent to me. #2 they are stuck with me and cant let me go due to illness. I do know that I will interview someone with large gaps and I cannot ask why-it is the law. If they are a great interview they get hired.

I am not sure how health insurance works for you but in canada when you are at a job and you have reached 3 months if they have group benefits you are offered them. If you accept them then they must take you regardless of any illness you have or had. if you refuse them and then apply later they can check your background and refuse you. I have good coverage.

[MCC]

I had three weeks off work in total - when I was very ill and in hospital and briefly after I started treatment (I went back full time a matter of days after starting treatment). My boss was happy for me to have time off for hospital appointments and so on, which was often 3 times a week to start with. I only do a desk job though, so a physical job would be difficult I imagine.

About 8 months after diagnosis I returned to the UK so had to find a new job. Fortunately the worst of the treatment was over and I was only having regular check ups at that stage (and medication of course, which I'm still on). In my interview I didn't mention anything about it and once I got the job I never told them the reason why I needed time off to go to hospital, which was every 3 months and a blood test a month after. I vaguely remember being asked about the 3 weeks time off in the interview, and I just explained I was in hospital with an illness....like you I also feared being seen as someone who may be a liability.

Insurance hasn't been an issue in my work.

Definitely it is different for everyone....it affects us all in different ways.

[vdub]

I retired in 2006. I believe my WG started in the spring of 2008. I was dx'ed in Apr 2010. Between '08 and '10 (dx) I had 5 surgeries. Had I been working, I probably would have had a total of maybe 3 months sick leave during those periods. Since '94, I have been in IT. Generally, I could have worked full-time, with the exception of the previously mentioned 3 months. I could be working now, but it would not be pleasant. Also, the pain pills I am on, sometimes create lapses of judgement and other meds cause lapses of memory. It would be difficult to work, but I could probably do it. That having been said, I am enjoying the heck out of retirement, even with the WG. This summer, the wife and I want to get our scuba cert and hopefully take a dive trip to the Virgin Islands or Antiqua. We just do things slower now.....

[norcalian]

I work in a high school and ended up missing a month of contract time due to illness and my hospital stay. It's summer now and i'm off for a couple of months so I guess I was a bit lucky with timing (except i was the summer school principal - so I missed out on that). My contract date to start again is August 1st. My Doctor would like for me to stay out until November, which unfortunately is not much of an option. So I plan on returning in August...fortunately, I am not a classroom teacher but more of an administrator/counselor. So my doctor and I agreed that if I can control who comes in my office it should be ok to return. Energy-wise though, it should be interesting. But I seem to get a bit stronger with each week. Work and disability is definitely on my mind a lot of the time though.

[Psyborg]

1. I was able to continue working...if barely. I blew most of my PTO quite quickly, but my job was willing to work with me and allow me to work afternoons from home so I could get a nap in. This was most important when I was on CTX because it completely wiped me out every afternoon. I was pretty lucky overall as I didn't get as sick as many did.
2. Yep same thing
3. Most of my missed time was actually pre-diagnosis.
4. Not applicable to me so I really can't speak to this.
5. Again not applicable to me. I'd say that you shouldn't volunteer anything necessarily, but if they ask then I'd probably explain it. At that point they can't legally use that as part of their hiring criteria.