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#1 fancyface

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Posted 22 January 2008 - 05:15 PM

The type or work I do seems to be getting harder and harder each day! :( My hands really hurt today. Are there very many out there that are still able to work with this condition? Mine is LIMITED scleroderma! I really need to work! I am divorced and bought my own home 2 years ago so I have a big fat morgage and truck payment and so on........
This has really been bothering me. I don't know if I can make it on disability. I have worked in dialysis for almost 8yrs now so this is basically all I know

#2 Peggy

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Posted 23 January 2008 - 06:10 AM

I know where you are coming from. Mine is diffused systemic sclero and I haven't been able to work much since July. I applied for disability through Social Security in December and I just got the call this week that I have been approved! I can't believe how fast it went through and I'm sure it's because whatever is in my medical file. All I know is that a big weight has been lifted off and now I can rest knowing that at least I have income coming in. Maybe you need to explore what you would get on disability and then pursue it. It's so hard to work when you are so sick. Good luck and

warm hugs from Minnesota.

Peggy

#3 lizzie

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Posted 23 January 2008 - 08:14 AM

Hi Fancyface, I have Limited (diagnosed 20 months ago) and work full time. My job is not particularly taxing pysically , but does require a lot of concentration. Some days are a bit struggle due to fatigue, but most of the time am fine. think, for me, being able to work is definitely good for my psychological health. I don't know how supportive or flexible your employers are but If your job is v tiring would it be possible to reduce your hours rather than having to give up work completely.
Lizzie

#4 KarenL

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Posted 23 January 2008 - 11:12 AM

Hi Fancy Face,

welcome. I work too. Not even a consideration of not working, when I wa shealthy we started a lifestyle that requires two incomes. I try to do part time as much as possible, but for the most part my illness has not changed my life or my workload. I'm a teacher and the worst part is the outside duties, like playground in the cold weather...I live in NY! At home, hubby helps a bit, but not too much. I still do most of the housework and shoping, cooking etc. Then the family laughs and wonders why I collapse at 7:00 PM every night! It's tough. I want to stay productive and not be sick, but some days it's hard!
Karen

#5 peanut

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Posted 23 January 2008 - 03:34 PM

fancy,
I know quite a few people with sclero that work. They are very tired so their time is quite valuable, so it's probably a good idea to establish boundaries. It's probably a good idea to know what is important and not, and what really needs to get done now and what can be put off. It will probably save you time. I've learned not to feel guilty if I can't commit to something because I've already made a dedication to taking care of myself and for the sake of my family I can't afford to break that commitment. Don't be afraid to ask for help. It might be good to keep on hand phone numbers of some family or friends you can rely on to give a helping hand when you need it. I think if you get lots of rest, take care of yourself, and are aware of your body's needs plus a little pain med for your hands things will work out.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#6 Kamlesh

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Posted 23 January 2008 - 05:35 PM

Hi Fancy Face,

I do work full time. I need to work (2 kids in college) and I want to work. I can’t imagine what I would do without work. I am fortunate to have extremely supportive employer and my manager. Specifically, last year I went through rough time and they were very supportive. A person from my HR went over any need for flexible schedule, short term, as well as long term disability benefits available to me.

I am glad I am working. It keeps me busy and provides me enough mental challenges. I believe I am more fit physically as well as mentally due to work.
Kind regards,

Kamlesh