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#1 graywolf14


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Posted 13 March 2007 - 10:13 AM

Hi there! how are you all? hope all is well. I just want to ask if anyone knows what kind of jobs does the sclero patients can do for living? I am bored here at home want to check something what I can do to make money and pay for my existing medical bills that I have.

Diagnosed with lupus, Scleroderma, Raynaud's, and ILD.

#2 janey


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Posted 13 March 2007 - 10:53 AM

I'm with you ! I went a year without working and got so very bored! Having been a teacher for over 25 years, the lack of communication and using my mind was driving me crazy. So now I work part-time from home as a technical writer, researcher. I have an in-town and an out-of-town client so I usually call in for meetings. Most of the work is computer work and communication is email or conference calls. The work keeps my mind challenged and busy so I don't spend so much time thinking about me. I get plenty of that with all the doctor appointments, tests and treatments. UGH!

For the personal hugs we all need from friends, I schedule at least one lunch a week out of the house with a friend. They are more than willing to come pick me up if I don't feel like driving.

Of course, for more "feel good", I volunteer for ISN. That's been rewarding in oh so many ways!

Hope you find something and that it is something you enjoy. Just don't take something to be working, find something that you enjoy doing and pays. What a deal that is!

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 jefa


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Posted 13 March 2007 - 01:28 PM

I am officially retiring effective 16 March, though I haven't actually been at work for the last two years. Prior to that, I found I was able to continue work while I was ill for another two years by reducing my total hours. The occupational health people recommended that I take Wednesday's off, breaking up my work week since fatigue was the main reason I found it difficult to work. They also suggested working at home. My employers were not willing to make those particular changes. They would have looked at a job share situation but we couldn't find anyone to take the odd other hours. There are elements of many jobs that many of you could easily do, but there are so many variable factors, it is impossible to say this job is something a sclero sufferer could handle. If you are lucky enough to be able to reduce your hours, work from home or enjoy a very flexible working relationship with an employer, that's great. My employers were reasonable flexible with my schedule and providing ergonomic keyboards, reseating away from air conditioner vents, hands free phone gear. I have been able to raise a fair amount of money selling things through online auctions. I got tired of having to take the things to the post office, though.

#4 Claudia-DR


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Posted 14 March 2007 - 03:00 AM

Hi there!

I have scleroderma and work part-time, which suits me well. I need to work, since like you I have lots of medical bills to pay. My hours are 8:30 am - 1:00 pm so I get the afternoons free to relax and take my son to his after-school activities.

Best of luck in finding your dream job!


#5 WestCoast1


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Posted 14 March 2007 - 05:44 AM

I can think back to my previous job and how straining it was on my body. As a hair dresser, I was in constant pain and emotionaly drained, even after just a few hours of working.

Now I work part time doing computer stuff outside of the home and it is SO much better. Someone mentioned that they work until 1 or so, and I think that it is important to have that time to recuperate from fatigue and also still have energy enough to get in a little excercise.


#6 Elehos


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Posted 14 March 2007 - 10:16 AM

Hi Graywolf,

There are different auction sites, and for about 4 years I worked on a lesser known one to make enough to pay for medical bills and the property taxes each year. My husband has a full time job, so it's not as much of a strain on me as for some out there to make ends meet, which is good since my health went south quickly last year and has taken me away from "business" for almost a year now. Even if a person receives SSD, you can make up to a certain amount each year and still receive a full monthly check, but I don't know the exact amount for this year. Last time I checked several years ago, it was over $11K, and since my earned income was much lower than that, it wasn't a problem at all.

I don't know about your current source of income, so you would want to gauge whatever you do by that--especially if it could become a legal problem due to $ amount earned and having to report to whatever agency. If you would like me to send you a PM to give you some details about what I've been doing, just let me know. Everyone has their own niche, so hopefully you will find yours quickl!

Best wishes,

#7 graywolf14


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Posted 15 March 2007 - 02:14 AM

Hi Elehos,

Send me PM I'd love to hear the details what you've been doing. Great! I appreciate it.