When did you know it was time to quit working.

I've been feeling extremely rough the last couple of months. I am weak, my whole body hurts, I have extremely severe dizzy spells, I can't even open a pill bottle my hands hurt so much.

When i'm sitting in my office sowmtimes waves of dizziness, and nauseousness come over me to the point I wish I could lay down.

I'm not sure how much longer I can keep up the pretense of being healthy and get up for work every morning at 5:40 am when some days it's a struggle to even stand. I'm only 42 years old.....this was not suppose to happen so soon.

How did you out there know when it was time to admit you could no longer work.

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Talk to your doctor about it, and see if you can get his support for a disability claim. I quit work before I got this support, and by the time the docs started figuring out what was wrong with me, I was out of insured status. Don't let this happen to you!

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I quit when my boss pissed me off enough that no amount of money could fix it. I had been working four-day weeks, with Wednesdays reserved for doctor's appointments for three years, and it was still exhausting and stressful.

That day came, I gave notice, and I've never looked back. I started the ball rolling on disability, was awarded promptly, and I'm MUCH happier and healthier than I was when I was working.

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My doctor talked to me about going on disability because I was sick most of the time and seeing her frequently. We discussed disability and she told me she thought it was time I stopped working.

It was a sad time for me because I had a lengthy career behind me with a large corporation. I was not ready to stop working, but I could no longer even get to work on time. It took me a long time to get ready in the mornings and I was sick the entire time. Most days I was dragging into the office late.

My co-workers knew something was wrong and they helped me as much as possible. It was then that I knew I could not let others take on my work load because I was too sick to meet my deadlines. I decided then to stop working.

I began disability proceeding and the rest is history. That was in 1997 right after I had my colon removed due to the scleroderma. I tried returning to work after the surgery but just could not be depended on to do my work in a timely manner.

I believe continuing to work long past the time I should have quit made me sicker. After my disability was approved my health began to get better. It was probably removing the stress associated with the job that helped me.

I have never regretted my decision. I think you will know when the time is right.
Kathy

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I knew I had to quit working when everyday I would say a prayer asking to please let me make it through the day. I did this everyday for awhile. I went out on a short term disability first and with the support of my doctor I applied for social security disability. I didn't think I would be approved the 1st time because of my age, I was only 27 at the time, but luckily I never had to go back to work. It saddened me tremendously to stop working, but my health was declining significantly and I was barely able to take care of my son. With the unfortunate reality of having scleroderma, I look to the positive and that I am able to be home everyday with my child. I also relieved a tremendous amount of stress on my body by not working anymore and I believe that plays a big part in my health improving.

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I worked until I woke up one morning and just couldn't stand up to get myself dressed. People starred to notice that I was walking funny because of the pain, I could barely get up from my chair and I felt ill everyday. The fatique was killing me. I spoke to my doctor and he put me out on disability. DO NOT QUIT. Go out on disability with your doctors help. Good luck.

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When I told my doctor that I couldn't do all the things I needed to take care of myself properly and do my job, he suggested I go out on disability.

He was very clear on the disability papers that I was permanently disabled with a chronic progressive illness. I had private disability insurance and, after 1 appeal, social security disability.

I had two doctors that were very supportive of me going on disability. One of the told me that, when I fill out the questions, to fill it out for my worst days. I did it that way with a note about having some good days.

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There are many factors to be considered with going on disability. One of my top deciding factors is "Am I making myself worse by continuing to work?" If you can immediately say Yes, then it's time. Money is important it is true, but if you are making yourself sicker, then you are going to use up MUCH more money than you can imagine and you lose ground in all aspects.

In my opinion, it's better to cut back expenses where you can, go on disability and work on maintaining your health than try to keep up with the rat race only to lose all your money to health care expense and phsycially/emotionally get worse and worse.

It all takes it's toll and only you can determine the optimal way to live life to it's fullest! Your body is changing. All of our bodies are changing. All we can do is "roll with the punches", try some new things and continue to laugh! Laughter is the BEST medicine and makes things tollerable.

Tell yourself "I'm going to be ok no matter what". You CAN reprogram your brain into success. Remember that boy Matty, on the Oprah show. He had Muscular Dystrophy (I have that too along with sclero .. different version than him but still MD). Dispite his pain and ultimate demise, he never lost sight of the gift of today and knowing that you must make the best of what you have. If work is depriving you of your life, it's time to make a change I'd say. You won't know what other opportunity you might be missing too!

Laurie

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Sage67, I'm considering the same about work right now. If you come to any conclusions you'd like to share, I'd love to hear. I'm taking all the input I can get these days! Hope you're having some better days soon!

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Saw my rheumatologist on Thursday, and while he sympathizes with how I feel physically, he stated that my lab results will not support a claim for disability. So I guess I have to wait and keep pushing through every hell day until I am sicker and sicker...... Maybe then I'll qualify.

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Is your doctor a scleroderma specialist? Maybe you need a doctor who is more sympathetic and believes that the stress of trying to work is making your disease symptoms worse.

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Did he specify some examples of lab reports he would need to have? It's a shame you'd have to push yourself and put your health in further jeopardy to prove you are really that sick :O. Praying it doesn't take that for you...

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He is one of two scleroderma specialists in Edmonton....what he said he would need to see is poor cardiac and lung functions. Which are still good for the moment.

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It will be a few weeks before I address this with my rheum. It will be interesting to hear his perspective, whether it matches other rheums. I was just researching the SS disability website and it appeared that other factors would be considered. Maybe your doctor is basing it on his experience with the claims system???

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Yes i do believe he is speaking from his experiences, and I guess he would know since there are so few of us in this city with SSC. It's not like we have allot of choices in doctors here a) because you need a referral in Canada to see any specialist and b) because the rheumatologists here all seem to work in the same building and co-consult on cases (with written permission of course). I wish I could go see another doctor totally unaffiliated. He is a good doctor, but, just tells it as it is, as he sees it.

i'm so very tired.... Oh well..... Cchat you have to let me know how that turns out Kay?

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I am so glad that I am reading this. I have also been thinking of quitting my job. But am also scared as I work for one of South Africa's top companies and the benefits are very good. But I also feel more and more tired and just basically not in the mood to get up in the morning. I took a week off and just relaxed. I felt so much better. I feel here by 2pm so tired and exhausted that my eyes just want to close. I dont have much pain, but my uncomfortability level is extremely high. I get irritated and frustrated very quickly. And trying to keep it in is getting very hard. When I was off I went to lie down and would sleep abit.

I also feel I am sick of pretending I am fine. My boss relies alot on me and has put me unofficially in charge when he is not there. My colleagues although very sweet and understanding is just to happy to leave matters in my hands. I have spoken to my boss about this, but he does just tell me that I am the only one he can trust. Although he knows I am ill, I dont think he realises that I a extremely ill. I have had Scleroderma for the last 4 years. The other day thinking this year I am going to bring in some changes I asked him about being declared as disabled at work. I will get a few more benefits. He is like oh so what is that illness of yours called again. That made me realise, although he is on the internet the whole day he has never bothered in 4 years to go look it up and read about it. When I dont want to take the stairs at work he says I am lazy. Can you bloody believe it???I can hardly get one foot in front of the other, but I am lazy and unfit. The worse part he is not a bad boss, he has always been good to me. When I told him that I want to be declared disabled, he was very supportive and said I dont have to do anything, he will sort it out.

So yes I feel bad wanting to leave, but my husband is pushing me to get disability and that we should move out of the city and to somewhere quite where life is much easier and healthier. I am 41, I always imagined myself working till 55/60 and now I feel quite scared. I have told my husband to give me till the end of the year. If I feel worse or still the same I will stop and start looking after myself. I must say that in the 4 years I have hardly stayed off work and therefore always put my work before myself.

I am going to see the doctor in a months time and then I will ask her what I should do. She has always been suprised that I still wanted to work.

Good luck Sage and Cchat. I hope really things work out for us.

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I feel your pain. I truly wish I didn't though.
I was diagnosed when I was 12, sense then the symptoms have came and gone but lately (33 years later) the pain has gotten continuous. I have a good doc and don't doubt for a second I would have his full support on a disability claim but honestly I'm not ready to give in. mentally I feel like I will just die if I'm not busy. :(

So for me at least I'll suffer a bit more, maybe until I can't walk.

I do think though after reading several others posts on pain and waiting to long that I will talk to my doc and have the pieces in place.

I'm just SO thankful for this forum and the people here, makes me feel like I'm not completely alone anymore.

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I'm in Canada too and qualification for disability benefits through the Canada Pension Plan may be different than through Social Security. I can empathize with you since I've plugged along working for the past 22 years. I've worked through each of the stages of Scleroderma - through the pain, the fatigue, the skin thickening, the facial and hand deformities etc. and am finally able to see the light at the end of the tunnel. In 5 years I'll be 60 and will then be able to exit the working world. Although I've often dragged myself to work in pain and crying, I'm thankful that I persevered. While I concentrated on things at work, my mind was off my declining health. I was so busy focusing on others that for 8 hours each day I quit feeling sorry for myself. I needed this although at the time many days were really tough.

Good luck to you.

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I don't know if you have this in Canada, but in the US we have something called FMLA (family medical leave act) which allows you up to 12 weeks off (unpaid, unfortunately) each year to care for yourself or another family member without any affect on your job status.

12 weeks also adds up to one day per week. I took this time, with a note from my doctor (there's a form available on the web for this) and I was able to modify my schedule.

Also, there is the ADA (Americans with disabilities act) which causes your employer to give you "reasonable accommodation" for your disability. For me, this meant bringing an oxygen concentrator into my office, and taking the time occasionally for a half-hour nap on a cot I brought in and hid behind the door (and, btw, others came to borrow it for their own 20 min snoozes!).

Find out what your rights are, and take full advantage of them.

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Hi! Kathy, Why was ur colon removed? What kind of problems was u having before u had to lose ur colon?

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I was a vendors rep, I loved a lot of things about my job. Just over 2 1/2 years ago I started having trouble lifting and carrying the merchandise I was stocking. I asked my boss to divide my territory. She agreed but was very slow about hiring someone, then she told me that I have a new store. So instead of less stores I had more. Just as I was ready to sit and cry over it my husband took a new job he was offered. He got enough of a salary increase that I could afford not to work. So when he gave his notice to take the job with his present company, I called my boss, told her she had three weeks to hire and train someone to take over my entire territory. I miss my job, but I did the right thing. I have days when I get nothing done. That's okay. I could not have kept up with everything and the deadline stress now. I am very blessed and I know it.
Kathy

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