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Crohn's Disease
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Posted 4/15/2014 3:45 AM (GMT 0)
Hi, I'm a 33 year old female dx with crohn's disease since 2005, I have tried many different therapies to keep it under control but I have symptoms every day, some days are easy and don't have problems going to work but at least once a week I am so sick that I have to miss work.
I have been blessed for the past 4 years b/c I have a wonderful boss that understands my condition the worse thing about it is that I work in the medical field and most of the pts I see are sick and of course with my Immune system being suppressed by my treatments for the crohns makes me a magnet for every single virus out there.

I have times that I stay sick for longer periods of times, and most of the time I have to hospitalized for at least 2-3 weeks, two years ago my clinic was bought out by a big corporation and the person in charge of my schedule has become irritated with me and my health problems, I switch from working full time to part time but I have notice that body has become weaker I can't last 8 hrs without feeling like passing out and they usually want me to work 10 to 12 hrs a day when I come in and just I week ago I pulled a 7 day straight at work and that killed me by the 12th day I had to call In sick b/c I passed out in the bathroom while getting ready for work, since than they decided not let me work this week, telling me that they will call me when I'm need it.
I'm upset, sad, and I feel Im leaving people down...

PLEASE ANY ADVISE OR ANY COMMENT, IM DESPERATED

people that don't have to deal with this illness don't understand what is to deal with it every day, so Im looking for some support from people that has to deal with this as well

thank u
Posted 4/15/2014 6:09 AM (GMT 0)
i'm on disability, so... if you can't work, you should consider that. that's literally what it's there for.

also, my parents, between them, have had well over a dozen careers in their lifetimes, everything from entry level to upper management. They have a LOT of experience. I'm planning to go back to school if/when my health ever improves enough, so we've been talking a lot about my options.

The thing my dad has consistently said is that I should be a consultant. You don't work specific hours, aside from keeping appointments, and you control the level of work you take up. In my case, he's recommending a business degree with a focus on technology.

I don't know what kind of medical consulting jobs are available, but I would imagine that if you diversify your human capital a bit (aka go back to school. and not necessarily for a long time) you can find/create a niche for yourself.
Posted 4/15/2014 10:13 AM (GMT 0)
It's interesting. I worked as a consultant for years, and now work in a salaried, managerial position. I think there are pros and cons.

The consulting position (before my Dx but had symptoms) was nice in that the days weren't as long. I could control my own schedule a bit, but when you're a consultant it's all about the client. It was harder to cancel a meeting or miss a deadline because that was the core of my work - and my entire livelihood. Also, on a practical level traveling to different offices could be difficult if you're in a flare - you always need to be aware of bathroom location etc. When I was a consultant I paid for my own health insurance and did not have sick or vacation time. Though I did make friendships, I did not have a work environment where I could share any health issues - the consulting relationship is relatively formal.

Now, in a permanent position, I have a very supportive environment, and have shared my health issues with a few people at work, which is nice. (Though I would recommend not over-sharing - many pitfalls.) But, many people report to me, so being out is more disruptive to more people though not threatening to my job as it was when I was consulting. I have more stable salary and benefits, which cuts down on anxiety about many health-related issues. I have 20 sick days per year, and though I rarely take all of them, I like knowing they're there. I can take them as part-days, which is common for me when flaring. The hardest thing is stamina -- I work at least 60 hours a week, and when I'm well this is OK. But, even if I'm slightly symptomatic I start to notice that I tire easily, get stressed - and these 2 things make everything worse.

So overall I'd say it's hard to work any job when flaring. But, I think the permanent position has been easier to manage than the consulting. Surely, it depends on the line of work because shift jobs, medical positions etc might be very different than my largely desk-type position.

Best of luck to you.
Posted 4/15/2014 2:13 PM (GMT 0)
I have had a fairly significant disease, but do everything humanly possible to make sure I stay as well as possible so I don't miss work. As my immune system is shot down due to my meds, I do take things such as high doses of zinc and vitamin D to try to help fight against getting sick. I also am constantly sanitizing my hands.

My job is a desk job that allows flexibility. I can use the bathroom whenever I need to, for however long I need to. I can go to doctor appointments I need in the morning/after work and leave early or come in late and make up hours missed. I have the mutual respect thing between my boss and I, showing her that I am trying my hardest and stay true to my word in making up time missed. I always warn that things can go south quickly, and alert my boss if I feel like it is getting to that point, but I do everything humanly possible to not allow that to happen.

Overall, I try to keep as stress free as possible... try not to worry about things too much and just concentrate on my work. It has helped thus far. I feel lucky to be where I am. If you feel you can't work, or it is too hard though... then try to get disability. I know everyone's disease is different, and everyone handles it differently. It is just so unique to the person.

Posted 4/17/2014 12:33 AM (GMT 0)
Thank you so much for all your information, I see I am not the only one dealing with this problem, I am working part-time only but I feel that any minute now I will lose my job because of my flares, well will c what happens, I will leave everything in GOD's hands

Thank you all
Posted 4/17/2014 2:56 AM (GMT 0)
Many people take leaves of absence, switch to part-time or switch jobs, or go on disability when they have active disease. Those who don't often are able to do it because of flexibility within their jobs. When I was first diagnosed, I had to talk to my supervisor about switching my schedule because I was always so sick in the morning and I was supposed to be in at 7am, but I spent the first few hours after waking up in the bathroom. So I moved my start-time til later. Now, I have a job where I work a lot of hours, but I can work many of them from home and if I'm ill, I can usually Skype into a meeting. I feel very lucky because I know many people don't have that kind of flexibility.
Posted 4/27/2014 2:50 AM (GMT 0)
My saving grace has been that I work 10 minutes from home and can come home for lunch everyday to use the bathroom and go back to work feeling better. There are days when I can barely wait for my lunch hour! I have learned what I can and cannot eat early in the morning to get through until then. I considered applying for permanent disability a few years ago, but my job comes with healthcare, and disability does not. that is a big consideration when you only get 50% of your salary from disability.
Posted 4/27/2014 5:04 AM (GMT 0)
disability actually does come with healthcare, at least in the U.S. I have Medicare as my secondary insurance right now.


It's pretty minimal, though. So definitely hang on to your insurance if you can.


and actually, my medicare coverage might be through my mom. she's retired, and i'm getting SSI under her quarters, since i never earned enough on my own and became disabled before i was 22. so you might be right after all. i'm not sure. governmentese is a difficult language
Posted 4/27/2014 9:11 PM (GMT 0)
I never really looked far enough into it to know what would happen to my insurance. I figured it would be Medicare or Medicaid, and I really don't want to deal with the paper work of that. I'll just stick with my job and hopefully be able to retire with my healthcare before this disease does me in!
Posted 4/28/2014 5:10 AM (GMT 0)
good plan. yeah, the paperwork on some of this stuff is pretty brutal. but as it happens, the feds are the easiest to deal with (once you're on disability), and they handle disability and social security. it only starts to get complicated when you have other coverage, like me (i'm covered through my dad's plan), or apply for other benefits managed by state authorities, like EBT benefits and whatnot. The difficulty of red tape at that level varies by county; my current county is atrocious (i scheduled one appointment, they had it down for three dates, two phone numbers, and then didn't keep any of them), but I'm told the neighboring county (where i will move, if i move at all) is fairly efficient.
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