Author Topic: To Work, or Not To Work...  (Read 17323 times)

jordozmom

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To Work, or Not To Work...
« on: November 09, 2009, 12:47:29 PM »
I have mentioned in some of my past posts that I am not sure that I can continue to work full time because of SJS and related complications, and my spouse and I are currently seriously discussing my quitting work after the holidays to focus on my health, our household and our family committments.  I am just curious what everyone on this board thinks of that decision.  I am really having serious difficulties making this decision, even though I (and my spouse) believe that this is the right thing to do.  Just when I had gotten used to my disease and its limitations and had adapted my life around it and accepted it, I had a "flare" about a year or so ago that has just hung on and it has me believing that this isn't just a flare but the new norm.  Well, I was able to handle my disease and working full time and taking care of my son before, but now that it has gotten worse I just can't seem to manage it and work full time, too.  The fatigue and joint pain just seem to make it impossible to get things done - I miss lots of work and I get nothing done around the house and my poor 12 year old has to pretty much take care of himself.  Not to mention that my doc says to get more rest and to exercise - well when the heck do you supposed I could do that?!  I can't even make it through each day doing what I'm doing now!!!  I guess it is just difficult for me because I have always worked and I'm afraid of making that decision.  I'm having a problem letting it go.  I keep trying to tell myself that it is temporary, but I'm afraid that once I quit I'll never make it back again.  And it means that our dreams of a newer/bigger house will be on hold, maybe permanently.  But, if I could eliminate the stress of trying to get to work everyday and the related anxiety about getting to work and being able to focus on it (which is becoming increasingly difficult), and could spend that time getting the rest and exercise and keeping my household functional that it would make me feel better.  Any advice, suggestions, comments?
SJS, Raynauds, Distal Renal Tubular Acidosis, RA, peripheral neuropathy, COPD, RLS, leaky heart valve (caused by SJS), Lichen Sclerosis.
Plaquenil, Salagen, Sodium Bicarb, Klor-Con, Ambien, Methotrexate, COQ-10, VitD, Multivitamin, Omega 3, B12

Redetha1

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Re: To Work, or Not To Work...
« Reply #1 on: November 09, 2009, 12:54:01 PM »
I quit work because I could no longer keep up.  While I now have limited funds, I have found that a lot of the money I was spending was purchasing things so I could continue work.  I feel much better now that I  am not working.  I am happy that I have quit.  However, every person is different.  Family is number one in my book.  Good luck with your decision.  Hugs

cindyh

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Re: To Work, or Not To Work...
« Reply #2 on: November 09, 2009, 01:11:27 PM »
I am still working full time and find it very difficult as well.  It is so hard to stay focused on work when you feel so tired.  I have thought about it and wondered if I would qualify for disability.  Have you looked into that?

Bucky

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Re: To Work, or Not To Work...
« Reply #3 on: November 09, 2009, 01:35:38 PM »
Jordozmom,

Unfortunately, this is a decision that only you and your husband can make.  For myself, I left my job last December as the stress of the job, the aches and pains, etc. wasn't worth the money I was bringing home.  My husband saw an instant change in me.  He would comment "you seem so much happier" . . which I am!!   ;D  Yes, you will have to make financial sacrifices - for me, it was (and still is) well worth it.  The job I had I worked 25 hrs. a week - which was enough, I don't know how those of you who work 40 hrs. (plus) do it.

So, for myself, I am very glad I made the decision to quit.  Are the finances a little tight?  Yes.  Do I get all the aches and pains I had when working?  No.  Has my stress level been reduced?  YES, YES, YES

Good luck with your decision.

Bucky
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DragonflyC

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Re: To Work, or Not To Work...
« Reply #4 on: November 09, 2009, 02:30:58 PM »
I agree that you need to do what's right for you and your family.

I wonder what your doctor has done for you, though.  Has he/she prescribed a course of prednisone?  For me, that's the only thing that ends a flare.  Rest and exercise and diet might help me avoid flares, but once one hits there's nothing that I can do about it on my own.

SueAnn

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Re: To Work, or Not To Work...
« Reply #5 on: November 09, 2009, 02:35:56 PM »
As already said, this is a decision that you have to make and you are very lucky to have the choice.   Maybe if you could get your health and family back the way you want, it may be worth not having the bigger house (it would just be more work anyway ::)).

Sue Ann

 
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Scottietottie

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Re: To Work, or Not To Work...
« Reply #6 on: November 09, 2009, 04:33:21 PM »
Hi   :)

I can't advise you one way or the other. We are all different. I work part time. I'd find full time quite hard although if push came to shove I could probably still do it. Part time suits me better though. I don't want to focus on my health more than I do. I want to forget about it and work helps me to do that. Work keeps me sane. I would really miss the people I work with if I had to quit.

Take care - Scottie  :)
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Wynter

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Re: To Work, or Not To Work...
« Reply #7 on: November 09, 2009, 04:34:59 PM »
I am  like you. In 2008 I had a flare that has never gone away. We had just moved and my husband quit his job to go to nursing school, so I was the only provider in our house. It seems everytime I have a lot of stress my disease progresses. I work on a computer and my eyes really bother me. After 8 hours of working, I eyes kill me. I have decided to work until I can't, and I am worried my eyes might be my downfall. Good luck.

marilyn143

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Re: To Work, or Not To Work...
« Reply #8 on: November 09, 2009, 08:42:49 PM »
it is a very hard choice to make.I had no choice but to work as I was a divorced mom.I had not been diagnosed yet and had no medical insurance.I ended up being in a house fire 5 years ago.I am now on dissability have barely any money ,which I wouldn't care so much about if I didn't have a teenage son.Really though I know in my heart it is the best thing for my body and long term health.having a good support system is a must.do what is best for you in the long run.

irish

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Re: To Work, or Not To Work...
« Reply #9 on: November 09, 2009, 09:05:08 PM »
I miss working and the socialization but I do not miss feeling so stressed out and sick all the time. At least now I can sit down and be sick without feeling guilty about missing work.

Also, as was mentioned earlier, I swear we do spend a whole lot more money when we work. Of course there is the wardrobe, gas, take out food cause we are too sick to cook when we get home, etc. I think most of us who have had to quit work have found that it is much easier to follow a budget and keep the spending down when we are home.

I find that I have the time to shop the sales and thrift shops. If you have kids at home who are being impacted by your lack of energy and patience when you work I guess I would feel better quitting. I did not have to make that decision as my kids were out on their own. Do what you have to do and if you start to feel better down the road you may want to do a little part time for some extra money. Good luck to all of you contemplating this question. It is something that everyone has to decide on their own. Irish ;D

eyeamdry

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Re: To Work, or Not To Work...
« Reply #10 on: November 09, 2009, 10:06:47 PM »
Irish, you're absolutely right.  There is no EASY answer and each of us is so different.  There is one thing that I like to bring up because many people don't think about it.  They know they're sick and they can hardly go to work and quitting is the obvious step when you feel like this.  If you are working a part-time low paying job, it doesn't take the thought to quit than it does a full-time job with benefits.

If a person has the full time job and possibly can take time to get their ducks in a row, it could be the difference between getting a slap on the back and some financial help for the rest of your life.  If you have FMLA where you work, first get in that and use days or a day at a time when you need it.  This might give you the stamina you need to keep on working.  Maybe not.  At the end of FMLA, file for short-term disability if your company has it.  I did and I got it.  After collecting short-term disability, I think it's easier to be successful getting Soc Sec Disability.  Of course, you have to be really sick to get disability.  You'll need to have good dr records for several years going back.  If I did not have all my doctor records and had not been to see my docs so much, I probably wouldn't have had a chance.  I had a solid 5 years of trying to find a doctor who could fix my eyes.  Then I had a medically necessary eye surgery and that's the last time I worked.

I didn't know that was going to happen, but if I'd just quit any time earlier, I'd have missed out on the health insurance too.  So take a few weeks to find out what you have on the line.  Lucy


Katybarstool

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Re: To Work, or Not To Work...
« Reply #11 on: November 10, 2009, 12:32:15 AM »
This is an interesting thread, and touches a nerve with me.

I work full time, in the UK, in the voluntary sector. I'm very lucky in that we get 10 weeks full pay in a year, if we are off sick. However, as most of you will agree I'm sure, no-one wants to have to take that much time, and it's certainly not looked upon in a positive light by ones employers. I had my sickness review yesterday. With various surgeries, swine flu and diagnostic tests, I have taken 41 days this year. My manager is very good - she's also one of my closest friends, but I know she is having to tread a fine line now, as far as my sickness level goes. I may need more time off in the near future for more tests, and possibly another prolapse repair, so I'm feeling a bit twitchy about the work absences.

For a while, I've been wondering whether I should try to reduce my hours, but my husband is older than me, due to retire in 5 years, and on minimum wage. For a variety of reasons, our mortgage has 15 years to go. So, although on a good day, I can see myself working for many years to come, on a realistic day, I know I will have to seriously consider reducing my hours in the not too distant future.

For now, I'm just keeping my head down, trying not to reveal too much health information, and getting as much rest at home as I can.

Kathyx

~elizabeth~

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Re: To Work, or Not To Work...
« Reply #12 on: November 10, 2009, 03:34:25 AM »
I gave up my job when I was about 33. It was a peculiarly stressful situation, made worse by having to take lots of sick leave ( never more than 10 days, though the company found more than one day a year unacceptable, as this was supposedly the company average), and my boss using this to bully me into doing lots of overtime for him. To top it all, my studio colleagues all ganged up and complained to the personnel department that they couldn't work with me as I was too 'ambitious', which was absolutely horrible (though the company found in my favour, and actually disciplined them instead, it was a bit of a pyrrhic victory as I just decided to leave at that point). I think the company would have been quite good about my illness if I'd actually been diagnosed with a condition at the time, but I hadn't even managed to get a result for my thyroid problems at that point, let alone the SjS, so it was hard to bargain with them.

I left to set up a company with my husband. Although theoretically ideal, it's been very difficult as I haven't been well enough to work that much, or keep up with huge advances in new technology that are constant in this industry. I don't have the stamina to work long hours finishing off rushed projects to limited deadlines, or go along to film shoots.

By leaving my 'proper' job, I no longer have any one to act as a referree if I want to take a less challenging part time job (as I foolishly tried to a few months back, before the current flare, only to get an immediate rejection letter). On balance, I wish I'd kept 'one foot' in my old job, maybe gone part time if it had been possible. Once you're out of the loop, it's really hard to get back in, particularly when you're feeling really low with this horrible condition.

Babs659

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Re: To Work, or Not To Work...
« Reply #13 on: November 10, 2009, 04:36:22 AM »
I'm thankful that I have a desk job as a veteran's counselor.  I would not be able to do physical work all day.  The mental stress of my job sometimes makes me feel ill, but I just leave early or put my head down for a couple minutes.  I am fortunate that I work for the State and only have 5 years to go before retiring at age 55.  After that I plan to work part time.  Needless to say, I'm going to hang in there no matter what.
I wish you well! :)

jordozmom

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Re: To Work, or Not To Work...
« Reply #14 on: November 10, 2009, 10:54:04 AM »
I quit work because I could no longer keep up.  While I now have limited funds, I have found that a lot of the money I was spending was purchasing things so I could continue work.  I feel much better now that I  am not working.  I am happy that I have quit.  However, every person is different.  Family is number one in my book.  Good luck with your decision.  Hugs

You know, I am finding that same thing.  We spend A TON of money on lunches and dinners eating out every day because I am just too tired to shop for groceries and cook.  At night I am just too tired to fix a lunch, and there generally isn't much in the house because I rarely get to the store.  Yes, I feel the same way about family, and right now it is ranked #2 below work because work takes every bit of energy I have.  Thanks so much for your response!
SJS, Raynauds, Distal Renal Tubular Acidosis, RA, peripheral neuropathy, COPD, RLS, leaky heart valve (caused by SJS), Lichen Sclerosis.
Plaquenil, Salagen, Sodium Bicarb, Klor-Con, Ambien, Methotrexate, COQ-10, VitD, Multivitamin, Omega 3, B12