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Curious about jobs and ability to work

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Ulcerative Colitis
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Posted 5/30/2011 5:34 AM (GMT 0)
I know this has been a topic before but I'm curious how many people are able to maintain full-time jobs.  I've read some people's posts and how they get by just fine.  The posts seem to have the general theme of a nice boss and flexible sick time.  Am I the only one that can't find this?  I was fired for being sick even when I was at work every day (and yes it was legal).  I also know that even when I feel good,  I can't do days longer than 8 hours.  I am now at the point where I need to figure out what career path I am going to be able to go down. 

Right now I am flaring and don't know how I would keep a job.  I have maybe 1 good day a week. 

Are any of you on disability? Supported by family/spouse?  Just curious how everyone is supporting themselves with this disease.

Thanks for any repsonses!

Posted 5/30/2011 5:55 AM (GMT 0)
I lived with my parents until I could build a small home debt free. I am self employed which allows flexibility, though I tend to work more than full time hours. My dad and I run our business together, and fortunately we are able to keep things going... he covers for me when I can't make it in.

I watch my money closely, as I know with a health issue that earned income is precious.

I'm trying to make my health my top priority, which in turn makes work a little easier if I'm feeling well. But... it's not always easy to have this disease and work. I credit my success to the support I got from my parents as well as my unending persistence to make it in life.
Posted 5/30/2011 6:23 AM (GMT 0)
I have my own consulting business in the field of computer technology. I basically set my own hours, and usually only book appointments in the afternoon when my guts are a little more settled. A 9-5 job be darn near impossible for me at the moment. If I had to do a 9-5 job, I would just have surgery and be done with it.

Luckily I had completed college before I got U.C. and already had a lot of work experience in my field that I built up while I was healthy (diagnosed at the age of 40).

There have been a few times when I was too sick to work for a week or two, which was quite devastating financially. I have medical insurance through my wife's work. Having to totally rely on yourself financially when you have active UC would be really tough.
Posted 5/30/2011 6:56 AM (GMT 0)
If you are having only one good day a week, then something is wrong, not unless you just happen to be in a flare right now, are getting better, and there is hope that you will be able to work full time in the near future.

I have found that most managers can not handle employees who are ill a lot. They can handle the fact that many employees have kids that they have to drop off and pick up from school. They can handle that because many times they do too. But a chronic illness, they don't understand because they typically don't have one.

Post Edited (subdued) : 5/30/2011 1:07:12 AM (GMT-6)

Posted 5/30/2011 2:24 PM (GMT 0)
I work for the Federal Government. People with Disabilities are well protected under a different Disability Act plus the insurance benefit are also better. I even qualified for Long Term Care Insurance...limited to 5 years but better than nothing!
Posted 5/30/2011 4:35 PM (GMT 0)
I have been doing consulting work in a technical field for 5 years. I do not want to be an employee again because this field is overworking their employees after cutting back its staff everywhere. I have been billing up to 65 hours a week and I would not want to be paid for 40 hours and expected to work that much. I had contract negotiations last week. On the one hand I had lucrative work from home contract with some upfront travel to establish working relationships with a 12 month duration. The travel was to the city I grew up in. Looked perfect. However the liability was too high so I hired an attorney and he agreed and added more concerns.

Now the WFH is terrific for UC because if I flare I can still get through my work and take my breaks see my doctor. So my current contract is driving into the city and its not a bad commute but if the urgency ever came back the commute might be an issue. So this week I got them to agree to better terms and the VP said I could WFH. They still want conversion to employee but agreed I could take this route for 3-6 months longer for the extra money to payoff last years expensive 64k hospitalization. Surprised they still wanted me to convert to employee on their health plan, I guess I come across as very healthy now. This is as good as it gets and this time I am old/wise enough to realize it so I am going to kill the other deal and ride this one out. Since I am spending quality time with my daughter and putting in overtime I am going to quit while I am ahead. If my late summer flare returns this year I cut back to straight 8's and 40 hours per week and get through it without paycheck instability.
Posted 5/30/2011 7:09 PM (GMT 0)
I work at a small libary. There isn't a lot of busy moments and I am so thankful for that. Right now I am flaring and I don't have much energy at all. I realize that I am lucky, because I don't have a high maintenance job. I wonder sometimes myself how I would cope if I had a demanding job. I thank God everyday for the job I do have! Also, the library is consider local county government and just like Peace&Harmony said is well protected up under the diability act. Our insurance is free for every employee.
Posted 5/30/2011 10:29 PM (GMT 0)
I had to quit my job in April because my symptoms were getting out of hand. Luckily, I live with my parents so I'm not responsible for rent. I'm hoping to get back to work in July or August once I get into remission.
Posted 5/30/2011 10:36 PM (GMT 0)
I know it's not an option for most people, but I'm fortunate to telecommute full-time to a computer programming job. When I worked in an office I was able to "hold it" and visit the bathroom just 2 or 3 times per work day when I might otherwise go 10 times a day. I'm also fortunate to have been in remission more often than not since being diagnosed in 2001.
Posted 5/31/2011 3:04 PM (GMT 0)
I work 4 days a week. I had one bad flare where I had to be out of work for a week. If I have a bad day, I call out sick, which is extremely rare. I've been at my job for 14 years.
Posted 5/31/2011 6:57 PM (GMT 0)
Generally my co. is extremely supportive, though there are always some who are not as supportive, one boss was out for 3 months due to a medical problem and then when the person who reported to him had a bunch of tests going on for cancer he seemed to forget all about those 3 months.

I have to work, I have no option, I carry the health benefits and am the breadwinner. My husband works for his father and it would be extremely difficult for me to get someone to insure me.  My mother and father have no money and I have always had to rely on myself.

I can go to the bathroom as much as I need to at work, there was one point where I was driving to work on trash bags, I can work from home if I need to (a day here and there is no problem).  As long as I work my 8 hours a day it doesn't matter if I am late, I just need to stay late.

I guess I am pretty lucky.  Though if it became too much an issue I would do the surgery, I can't not work.

I am trying to pay off my house asap so that if things ever do go bad then at least I have my home.

Posted 5/31/2011 7:23 PM (GMT 0)
I was self-employed when UC began 10 years ago and had to make changes in how I worked which was 80% in-office and 20% on-location outdoors as a photographer. That 20% of my time however generated 100% of the income, no photography no income.

I began hiring other photographers and trained them and then I spent 100% time in-office. As it turned out I had no lost income at all, and could schedule office appointments in the afternoon (my colons good time).
The good part of self-employment is you'll never get fired, the bad part is you get to pay all the bills including health insurance and "sick" days means no paycheck.

I was lucky to retire early because of investment profits and heavy savings through the years.
If I had gotten UC early on I think I would have looked for a federal or state job with strong medical benefits and no way to fire me. I was lucky if you call getting UC at 46 lucky.
Posted 5/31/2011 8:42 PM (GMT 0)
I work 6 days a week ranging anywhere from 8-12 hrs although I only get paid for 40hrs so Im forced to rent at home. Job is understanding because my father is my boss.

Im thankful that hes understanding of the UC now but the extra stress and the lack of money is pretty depressing. It could be worse though. I keep putting off my surgery because of work too. No matter how hard I try, it just seems like I cant save enough to get by for a year if I have to without a job.

Ive had previous jobs where I had to quit because of the UC. Im very introverted when it comes to my health and I feel embarrased discussing it with anyone but immediate family.
Posted 6/1/2011 12:36 AM (GMT 0)
I am a preschool teacher. I am very fortunate to have an assistant who understands if I have to dash out of the door! Also, since my class is so little they understand the "Gotta go potty right now!" statement. Only negatives are field trips and we just do our best :)
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