working with wg

[kdjaxn]

What have your experiences been with working full time and having wg? Is it a challenge and if so, in what ways? Has anyone needed to go on disability for it? Thanks

[morningsunshine]

Hi there,

I was diagnosed in May. I went on short-term disability for 3 months immediately after diagnosis (and I used up all my vacation & sick leave in the month prior). I was pretty beat and I needed the time to recover. I could have gotten approved for long-term disability, but I was going stir-crazy at home and I really love my job, so I went back a little earlier than I otherwise might have.

4 months ago I went back to working full time and it's been fine so far. I have a desk job and a very supportive office, which makes it easier for me to make and keep the many doctors appointments.

[pwc51]

I have had WG for 5.5 years. When diagnosed I was off work entirely for 3 months and then half time for 3 months. Since then I have been back full time. During that time I have flared 3 times but have just required the occasional day off for RTX infusions. Naturally I have had ups and downs - some days have been tough but equally I have had had long periods where I feel good. Around the middle of this year, for example, I was travelling to the US for 2 weeks every month. Since August I began to feel the symptoms returning and by November I certainly did not feel like travel. Now, back on the treatment I feel great again!

To me there is little doubt the stress of my job and of travel probably contribute to the flares - but I enjoy my job and think that not working and having time to mull over my condition is a worse option!

[B_in_Florida]

pwc51,


You say you enjoy your job. What kind of job is it, that you can say that?

[BarbW]

I teach high school. I know someone else who does too. Sometimes I just need to lie down by 6 PM for the night. I've given everything.

[John]

I am 66 now. Was a Special Ed. Teacher when I found out that I had WG. Had been only teaching for 14yr. Lucky I was vested in teaching and received disability from teaching for 5 yr then I will go on retirement. Schools are not a good place to go if you have WG as the ammune system is low and a lot of kids bring in different things, colds, flue, etc. My last assignment was in a youth correctional setting. My flair up's kept me from doing my job and I hated to put extra work on others. I know the money wasn't as good on disabiltiy/retirement but I will prevail.

[MikeG-2012]

What have your experiences been with working full time and having wg? Is it a challenge and if so, in what ways? Has anyone needed to go on disability for it? Thanks

When I was first diagnosed, I came back part time to work, mainly because o the healing from the lung biopsy. That was April of 2012.

Since then, I've had a bad flare up and am still back to work full-time. Just like Barb said, there are days when I get home and crash from giving it my all at the office. People ask me all the time around here, "How do you work with all that you have going on?" I tell them that I'd rather be doing something than sitting at home wallowing in my pitiful state. So to me, work is my therapy, both physical and mental. Are there days that I don't want to get out of bed and go to work, YES, almost one every week. But, I was raised to have a good work ethic, so I drag my sorry behind out of bed, prop myself up in the shower, get dressed and go to work.

I work at a college as an A/V technician. I plan, design and install classroom technology. Since I am the only employee in my department, if I am not here not much gets done. I have student assistants, but they are not trained to do most of the things I do every day.

[blu4runner]

I am still working full time but I have the benefit of being self employed. When I need off I have staff to run my office. I have been an insurance agency owner for 31 years now. My biggest challenge is being able to talk since we are sales and service oriented. I have challenges since I still have the Trach tube but most of my clients are very understanding.

[kaysee]

I am glad to hear so many of you are still working. I was sick and working as a math specialist at a high school for over 2 years before being diagnosed. I used up about 40 days of accumulated sick leave in those two years. After diagnosis last April I retired. There is no way I would have been able to continue working this school year. I was hoping that after my 1st rtx treatments last July I would be able to look forward to doing the things I wanted to do in retirement, but I have not been able to do that. I've been hospitalized twice since diagnosis and although I am feeling much better I have hip pain that is making it hard for me to get around. I was planning to tutor students privately, but don't feel good enough to even do that. I am currently doing physical therapy for the hip pain and I'm hoping to someday get around to walking again without pain. No one really knows if the hip problem is related to WG or not.

Karen

[kdjaxn]

:smile::smile:Hi Karen I'm very sorry to hear about your hip. My mom has Osteoporosis, and a lot of other stuff but not wg. I read the medications can affect bones but as quick asa few months since you've been dx'd I don't know. Hang in there, it sounds like for many of the group it will get better. My mom fractured her hip and she's using a walker but woe to anyone who tells her she can't do something. She will find a way. All the best to you.

[kdjaxn]

Thanks everyone, it looks like we all look forward to keeping our live's passions going if we can, and handling flares as they pop up. The experiences are as varied as the disease but with persistence, willpower and each other we will savor the time given to us, the good and bad, looking forward to a new and better day.

[kaysee]

Hi kdjaxan,
They did an MRI on my hip while I was in the hospital last month. The doctors did not see any damage from prednisone. My rhuemy says damage from pred is very easily seen on an MRI. They did see arthritis, water in the groin area, and bursitis in the outer part of hip. I've been in water therapy for about 3 weeks and have seen a little improvement.

[Mas78]

When I was diagnosed 14 years ago I had to take 3 months off work to get better. since then I have been able to work with one or two sick days a year.
At that time I worked 3rd shift which worked out for as me I didn't have to take time off to make it to doctor appointments. and these days I try to make appointments in the mid to late afternoon so I don't have to take most or a whole day off work.

[NicShaf]

I'm sure the answers to this question vary immensely based on everyone's condition, and occupation.

I'm an Administrative Assistant, so not a lot of physical demands with my job. I went back to work about 2 weeks after being released from the hospital. I was 26 at the time I was diagnosed. It was rough to work. Luckily, when I went back, it was winter (in CA, that means 65 degrees outside) so I would take naps in my car on my lunch break to make it through the day. I called in sick occasionally if I was too tired, but for the most part I took it day by day and was able to work full time. As my Pred doses went down, getting through an 8 hour work day got a little easier.