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11/26/2008 18:09
fibroforever
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 I'm wondering how many of you are able to work with your illness. And if you do work- do you work full-time or part-time?

I haven't been able to work for a couple of years and recently was awarded SSD benefits (after the several year wait).

Yeah- wondering about each of you.

Try and have a wonderful Thanksgiving. Remember to be thankful... you are here and you are alive! That's reason enough to be thankful!

"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
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11/26/2008 18:22
karli1238
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 I am still working full time but do have an fmla on fill so I can miss work if not feeling good. I am having a hard time with people from work because they can't see pain. It's subjective. I can tell they just don't want to hear about it anymore. Like it's my fault i'm sick. I'm just glad I have this week off. It's a company shut down due to the boeing strike so i only get paid for 3 days but oh well the time off is nice.
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11/26/2008 20:29
redhairali
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 I have SLE and APS. I have had 3 strokes and my memory is shot, I am on SSDI. I have been thinking about a little job, to help. But I know learning something new will be SO hard. I am making bracelets for my other lupus board. That has help with money some. And I can make them at my own pace.

Ali
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11/28/2008 18:12
mumeva
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 I applied for disability in 2006 and finally going to a hearing in January. I am lucky because we have our own business and I do the bookwork so if I am not able to get out of bed I just put the bookwork off until I can do it. I would love to get a part time job just to get out of the house but the lights would kill me and there are weeks when I just can't get out of bed so I guess the part time job would be out of the question. Thankfully I love to do crafts and I love to crochet and knit when my hands let me otherwise if I didn't have these hobbies I would go bonkers - well let me put it another way my head did "explode" last year
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11/30/2008 02:49
fibroforever
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 Good luck at your hearing! I had mine the middle of Oct. (I think, there's a lot of blur there. )

If you have any questions about it, feel free to send me a PM and I'll see if I can help. The main thing is to be honest. -- I've been working a part-time job of, well, it was two, 5 hour days at the time, and now it's just one, 5 hour day. The judge was fine with that. I know that every State is different. But, yeah- if you get the nervousness and need someone to talk to, let me know.

"When you feel like giving up, remember why you held on for so long in the first place." ~Unknown
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11/30/2008 13:30
mumeva
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 Thanks I just might need to talk to ya about this. I do bookwork from home and yeah I can work but can only earn so much money a month and that is aloud here in our State. I do have an attorney who is my brother-in-law and he will be with me at the hearing. He has been such a great help with this. So much paper work!!!
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12/03/2008 18:00
Jessykay
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 I used to work full time but now due to fatigue and variety of other lovely problems I work part time - 3 days a week. I have just applied for disability here in Alberta, Canada. I have been approved financially and now am waiting for my next Rheumy appt. in 3 weeks for him to (hopefully) sign my paperwork. My family doctor refused to sign. He was very rude to me about it when I asked him. He could have just said no but he had to make me feel like lower life form. In the end he said he didn't know me well enough, which is true he's only been my doc for 2 months because I have just recently moved from Toronto (in Ontario) to Edmonton, Alberta.
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12/05/2008 11:07
Tina06
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 I now work four hours four days a week. I had such a struggle maintaining a full time position with fatigue and a pile of other issues. I am blessed to have such a patient, loving and heartwarming husband by my side and a solid backbone filled with a loving heart Mother who has been there through thick and thin. My Aunt (Second Mom) has also came to care for me at the drop of a dime.

I continue to pray that the state will come through for me. The wait is such a bear.

Pertina
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12/05/2008 13:59
mumeva
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 Your right the wait is so very long. I applied in April of 06 and have a hearing date set for January. I can't believe it I guess patience paid off for me. I have a wonderful brother-in-law who is helping me through this so he will be with me along with my wonderful family. I am so glad that you have such a loving family who has been with you through the worst of times. I too have a wonderful family that has been with me from the very beginning of this illness. They go with me to all my visits because they are out of town and they don't want me driving by myself. We are truly blessed.
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12/06/2008 16:04
ColdJed
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 I had to quit carpentry because of Raynaud's. Lupus and Sclero keep me tired, but if I had my hands and feet back, I might be able to pound some nails again. This fall I tried going back to school, which was/is a general disaster. Having just been diagnosed in June/July, I'm still trying to get my head around what's happening to me. Lack of sleep and lack of concentration have been an enemy this semester. Finals are Monday and Tuesday, and I'm not sure I can get everything done. I'm in serious danger of failing out this semester...don't know what I'm going to do.

I realize there's many, many people out there with more serious illnesses/conditions, some who keep their head up higher than me. It's just that I've always been healthy. For goodness sakes, I'm 28, and I've been athletic my whole life...playing soccer, swimming competitively. I swam the whole length of a lake to raise money when I was 17 years old - 18 miles in around 9 hours without stopping. I'm no triathlete, but it's hard to come from there to here.

I wish I could just find work that pays a liveable wage...maybe move south where it's warm. I'd love to build my own house - nothing large, just small and simple. I want to work and support myself, you know? I just want to live. Why the hell do we have to put up with this nonsense?

Note to self: Never get sick.

-Jared
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