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AS and work #280813 07/21/18 06:42 AM
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sdot Offline OP
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What do people do for work? What do you do when you realize you cant do what you do anymore? Its understandable that some people do from dead end jobs to disability, but when you have a good career and AS comes knocking, what do you do?

Re: AS and work [Re: sdot] #280815 07/21/18 12:22 PM
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If you have severe symptoms, I don't know what you do. If your symptoms are less severe, if you are able to still work, I think you need to look for a job that offers good group disability and health insurance, even if it means sacrificing your dreams (of running your own business, etc.) and perhaps doing something you don't particularly enjoy. In the United States, unfortunately, getting and keeping insurance has to be your top priority when you have a chronic health condition. Young folks reading this, who maybe have mild symptoms or (best case scenario) haven't been diagnosed yet, take this to heart. If you have AS and you have children who haven't been diagnosed yet, make sure they buy individual disability insurance as soon as they start working and make sure they look for a job with good group policies. Social Security disability, assuming you're even able to work long enough to earn it, does not pay enough to live on.

Re: AS and work [Re: sdot] #280824 07/22/18 12:34 AM
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I find when you are in more of a professional role with lots of sitting and srree it gets tough and as you get older robbings banks is a tough sport because sometimes you just cant run from the cops good..

Re: AS and work [Re: sdot] #280826 07/22/18 01:56 AM
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Mary Beth Offline
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Depends on what you do. The first choice is to try to modify things about your current job to keep it manageable. The second is to try switch careers. The last choice is disability. It can be necessary but it’s a tough blow to your budget and your mental well-being.

I also encourage you to see if work really is exacerbating your condition. Before I was diagnosed I was in a lot of pain and had significant loss of function. Work made me sore but staying home was even worse. Turns out my office chair was better than anything I possessed. So I got stiffer through the day at work but if I stayed home I was stiffer yet.


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: AS and work [Re: sdot] #280827 07/22/18 01:56 AM
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Mary Beth Offline
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If you have an office job I can give you tips.


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: AS and work [Re: sdot] #280835 07/24/18 03:30 AM
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I was just diagnosed with AS last year (back pain started in my teens). I am a 37 year old female. I work in an office. They did an ergonomic study. They lowered my desk, got a more supportive chair, keyboard and mouse wrist supports. I work for a large company so they are very flexible with my work schedule and offer better than average benefits. I hope to work here until I can't work anymore. I have fusion in my hips and some in my upper spine with recurrent Iritis. An understanding employer makes this journey easier.

Re: AS and work [Re: sdot] #280841 07/24/18 11:02 PM
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Mary Beth Offline
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As Pixie said, a large or medium employer will work with you on ergonomic issues. In addition to what she mentioned, a sit-stand desk can help; I can't stand much but I can adjust the height easily. If not a sit-stand then a keyboard tray. This allows you to make minor changes to your chair height and keyboard height periodically so that you are not in the same position.

Try to get up once an hour or so and move around. If you are not allowed to walk around (I know my employer is fairly strict) you can do a few quick in-place stretches.

Walk on your lunch and breaks. Every day, without fail. Even if it's only five minutes, but I try to get in 15 or 20 minutes of walking on my lunch. If the weather is not ok to walk outside, I do laps of the building inside.

Squeeze in a few shoulder-opening stretches throughout the day; open doorways make this easier.

For myself, setting my keyboard much lower than one would think is most comfortable. Basically my arms hang straight to my elbow without having to raise my shoulders at all.


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: AS and work [Re: Mary Beth] #280845 07/26/18 03:04 PM
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Hi. I studied engineering, but now work at home as a web designer and social media manager. It allows me to work when I can, and in any position.

It took me a LONG time to get diagnosed. I just kept pushing, and finally the cause of my problems was revealed.

I was wondering about the medication you say you are taking, the TNF-blockers. Can you tell me more?

Re: AS and work [Re: sdot] #280944 08/06/18 01:26 AM
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I have the exact same question. I work for myself and I do not have any medical insurance due to raising three children and a limited income. I make more than what the government will allow and not enough to pay out of my pocket. I have a physical job that I can barely keep up with and now I'm not sure what to do.

Re: AS and work [Re: sdot] #281023 08/13/18 06:20 PM
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Sorry for the long time to reply. I have been to hell and back...and then to hell again.

My background is in IT, and while I ended up being able to work from home, the sitting, brainfog, discomfort and everything else made it very difficult. I ended up getting laid off and it's been hard to find something new. At one time I could work around the clock, travel anywhere for work and sacrifice myself to earn a buck. Now, that's just not the case. I am pushing myself to my new limits and it is incredibly detrimental to my health.

It's a struggle now, and with no health insurance and no money it's a lost cause. Just trying to get the balls to go rob a bank or something.

I think I am probably dying, but it's soooooo slow, and I am not sure how long it will take for North Korea to nuke the world. I am not sure how much of a fight I have left in me. My wife would probably be against the whole bank thing, but you know, I am open to ideas.

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