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angels71

Quitting Your Job To Recover

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Has any one had to quit work to recover? Sometimes I find it very hard to put in an eight hour day because of the way I feel. But if you don't work full time it is hard to have insurance, which is what I need right now. When I am at work I never know when my stomach will act up, which only adds to the stress of working. I would like to work at home, but it is hard to find anything that pays well. Any ideas?

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Has any one had to quit work to recover? Sometimes I find it very hard to put in an eight hour day because of the way I feel. But if you don't work full time it is hard to have insurance, which is what I need right now. When I am at work I never know when my stomach will act up, which only adds to the stress of working. I would like to work at home, but it is hard to find anything that pays well. Any ideas?

I am slightly versed in human resources. How big of a company do you work for? If it has over 50 employees you would qualify for leave under the FMLA. I understand about your worrying about insurance - can't be without it! My dd is and I'm paying her med bills while she's in college. How long have you been gluten-free? Are you still getting glutened from hidden sources? Let us know how you're doing.

Annette

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I wish I could afford to take off for the three months covered under FMLA- I'm beyond tired a lot of days. Instead I found a compromise I'm working a 4 day week instead of 5 with a guarantee of 3 days in a row off. I've worked with HR to sign up for FMLA so I will be protected. I'm trying this for 6 months. Right now, I am always having to push myself to get up, get dress then get to work and of course push myself to work at work. I'm starting this new work schedule Tuesday. I'm praying it works.

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I wish I could afford to take off for the three months covered under FMLA- I'm beyond tired a lot of days. Instead I found a compromise I'm working a 4 day week instead of 5 with a guarantee of 3 days in a row off. I've worked with HR to sign up for FMLA so I will be protected. I'm trying this for 6 months. Right now, I am always having to push myself to get up, get dress then get to work and of course push myself to work at work. I'm starting this new work schedule Tuesday. I'm praying it works.

That sounds like a very good plan. How long have you been gluten-free? How long were you sick before dx? And are you sure you've eliminated all gluten? The crushing fatigue plus the mood swings are the worst symptoms for me. I always feel like I should get so much done around the house and when I've been glutened I'm in bed as much as possible for at least three days. Frustrating, so I do know how you feel. I hope your recovery is quick. Please feel free to ask the board anything - there is such a wealth of knowledge and experience that I've never seen anywhere else.

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Yes, I quit my job in the fall of 03. I really loved that job and did not want to leave, but at the time, I had used all of my sick and personel days. I had fainted at work and was dizzy much of the time. Add to that the stomach/bathroom issues, which were becoming increasingly more urgent and unpredictable, and the general fatigue. My anxiety kind of took hold and I only really felt comfortable at home. I am very lucky, in that, my husband has decent insurance through his place of employment.

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I had to go out on disability because we did not know the root of my problem at that time. It was a hard road because I was the primary breadwinner at the time due to my education level and field of expertise. I simply could go no further. I had to have my husband drive 45 minutes each way twice a day to get me to work and even then I could hardly do what was required.

I wonder now...if they had realized it was celiac disease several years before all the neurological damage was done, would I still be working?

Hang in there as long as you can. It sounds as though your company is working with you. I would give you some advice, though.

-Cut out everything else in life for a short time and concentrate on getting better and working to the best of your ability.

-Become fanatical (for a short time) about what goes into your body.

-Avoid eating out while you are at work. It is more trouble, but you will heal faster.

-Pass chores at home on to others. When you are not working, rest. Even my 8 yr old learned to do his own laundry. Other parents were amazed that it was possible to teach them to do for themselves, but it is.

-Don't worry about how your house looks for a month or so. Hit the high spots (or better yet, let the rest of the family hit those high spots).

-Prepare larger amounts at meals and use the extra to feed you and your family for a couple of days at a time. Mine hated leftovers, but trying to cook every day was more than I could handle. This way the work was spread out. Also try using "one dish meals" as often as possible, you know, those you mix together and stick a casserol dish in the oven for an hour kind of thing.

Think this through and you can find ways to cut your efforts. Ask for help. If your family is involved in the planning process, they may also be more inclined to follow through.

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I know how you feel. One thing to think of regarding insurance is what will you need to have done test wise. Since there are no medical cures, maybe you can get by without insurance.

I have so many other health issues that quitting my job would be impossible ( salary!!). I am covered under my husband's health insurance.

As far as having unpredictable bathroom issues, I have gone through that for years. I have developed a lot of strategies that might help you. I have taken an extra set of clothes to work, plenty of underwear, poise pads, and even the poise "diapers." I know it sounds crazy, but when I know that I have those items, I do not get as stressed out. Also, I rarely wear dresses or skirts anymore. Just too risky with the chance of having an accident!

I sometimes rely on imodium if I can't get it under control.

Good luck with everything...Hope you'll be feeling better soon!

Bee Fee

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February will be 2 years gluten free. I'm a fanatic about it - I know I'm not eating gluten. I've done the research - I used to be paid to do historical research for a living. I've been ill my whole life but wasn't diagnosed until a week after my 45th birthday. I was usually given one of three diagnoses: 1. food poisoning 2. a virus 3. nothing is wrong with you, go home. It got really bad starting about 4-5 years ago although I had a bad spell when I was 20 and had to quit my job and move back in with my folks for a couple of years. (I wasn't happy with that)

Because of the delay in diagnoses I have a lot of health issues besides Celiac. My body was shutting down and I was near death before finding a doctor with sense. I had Candida - just got rid of it. Yea! I have toxic levels of aluminum and lead - nearly got that under control. I also have food allergies (soy, peanuts and egg whites). My thyroid and pancreas work when they want to - which isn't often. I have chronic EBV - I have an episode on the average of once a month. My metabolism seems to be broken too. The last couple of years I ate between 200 – 800 calories a day, but gained weight! I’m finally up to 1,000 calories a day and I’m still gaining weight, but at a slower speed. My stomach is still very sensitive. I can not eat spicy food and fatty foods are not my friends. I have mood swings too, but its the fatigue and the weight gain that gets on my nerves the most. I'm an overachiever and I've been reduced to counting it a good day when I get out of bed and get completely dressed all on the same day. And getting to work is a great day! My mother moved in with me in 2004 to help me. Without her wonderful self I would be living in a pig sty and reduced to eating potato chips. I'm not up to cooking and cleaning. She now is helping me get up in the morning so I won't miss any more days at work. She has been a blessing to me. :wub:

My doctor and I feel there is one more undiagnosed problem and she is the midst of having a ton of blood work done to try to find it. If any of you have any ideas what we should be looking for – please let me know.

Thanks

That sounds like a very good plan. How long have you been gluten-free? How long were you sick before dx? And are you sure you've eliminated all gluten? The crushing fatigue plus the mood swings are the worst symptoms for me. I always feel like I should get so much done around the house and when I've been glutened I'm in bed as much as possible for at least three days. Frustrating, so I do know how you feel. I hope your recovery is quick. Please feel free to ask the board anything - there is such a wealth of knowledge and experience that I've never seen anywhere else.

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Some posters here have leaky gut syndrom. I don't understand that too well, but it happens after your intestines have been damaged for a long time. I use L-glutenate - I read that it is very good for celiacs from another poster on this board. It really does work - I know I got cross contaminated at Christmas at my db house but the physical effects were very minimal compared to previous glutenings. It might help (take it for a month) and it's rather inexpensive - get the regular OTC, not the health food store stuff. And of course, really baby your tummy. You do have a long way to go, obviously, but you will get there. Another thing that is very important to celiacs is the amount of protein in your diet. Do you have a protein supplement? I don't know what to recommend because of your other food problems, but if you could find one that you could tolerate it would probably help immensly with your fatigue levels. I would also recommend eliminating milk products, if you haven't already. You may be able to eat them again later, but right now they are too hard to digest. Maybe you could pm tarnalberry and/or KatieUSA. They are much more knowledgeable about the lesser known aspects of celiac disease than I am.

Annette

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Well, I quit my police job when I had all that pain in my forehead and belly, because I thought that stress caused it. It didn't help though and about 5 years later I found out I had celiac.

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I am still on disability. I went on disability when I couldn't control the celiac or the collagenous colitis. The pain was so intense (I liken it to a constant toothache kind of pain in my abdomen) that literally was driving me insane. Couple that with the fact the the collagenous colitis had me going 20 - 30 times a day, and I was losing my ability to control it, and the fact that it seems to be quite nocturnal (it wakes me up around 2 and it won't settle down until around 6), I was exhausted during the day. I finally decided that was enough, I needed to take time off (I have worked for the City of Toronto for 19 years). Unfortunately, after many different treatments, we still have not gotten this under control, and the pain some days drives me out of my mind..... but I truly believe one day we will get this figured out and under control.....

Hugs.

Karen

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