Do you work full time or part time or unemployed?

[happylife]

Hello

I read a research paper that 80% sjogren are unemployed.

With this poll i want to hear from this group.

Thanks.

[Judes]

Well I'm still undiagnosed but quite certain I have Sjogrens, and I work full time. It's a very demanding job and I'm having a hard time at the moment. I hope I can get on some meds soon that will make it easier. Not certain what the future will bring but I hope I can work for several years as I'm only 53.

[Joe S.]

I checked unemployed but it should be Disabled/retired.

[irish]

I worked about 8 days a pay period for many years. I had a hard time working and keeping up at home for years but I was able to grab naps and make it through. I was always tired and half sick. I had to take some medical leaves a couple of times. I quit work for good June 18, 2003 and was diagnosed with Sjogrens in September of 2003 after being sick since 1964.


I did registered nursing and it was physically and mentally stressful and there were so many times I didn't think I would make it through the day. The last 5 years I worked was really difficult as I had so many more symptoms. My staff would ask me when I was going to quit work and I would tell them "when the doctor tells me I am sick". I finally hung it up before diagnosis as I could not fake it or pull myself together enough anymore. Unfortuately, this is often the way it goes with those of us who suffer from rare diseases that are hard to diagnose. Good luck. Irish

[SjoGirl]

PT two jobs which together equal more than FT. I am certain that my hours were reduced to PT at my last FT job because I was ill. I have not been employed FT since.

[Scottietottie]

I'm retired - but was working part time when I left work as I found a whole work week too tiring. 

[warmwaters]

I'm not unemployed, I'm disabled enough to not work. Also, retired seems like another missing category.

[happylife]

Hi Warmwaters

Thanks for the suggestion. I have updated the poll.

[markt]

Still working full time for the Navy as a Civilian. Also, still in the Reserves; retained on a medical review board.

Managing my impairing dryness (hopefully with room for improvement)... no arthralgia or disabling neuropathy yet, so doing the best I can for my family.

[happylife]

Hi Markt

Great to hear that you are full time employed.

Can you confirm since how many years you have sjogren symptoms?

Your ssa, ssb, ana, schirmer, ocular stain score please?

[markt]

Positive ANA (homogenous), but negative for SS-A/B.  The antibodies captured in my screen were SP-1, CA-6, TPO (possibly others that we are are still unaware of).  Positive biopsy with focal lymphocytic sialadenitis.

Schimer's test 2-R / 1-L.

Couldn't tell you what my OSS is... I have been all over the map on that one.  Usually Light/Mild staining of the Conjunctiva, but that is with bandage contact lens use.  Without that it'd be pretty bad.

I have been on Rituximab and am now trialing Xeljanz (Tofacitinib), which I may continue in lieu of RTX depending on what my Rheum says when I get back to Hopkins on the 09th.

Also, I am starting the Lacritin Phase-I/II trial.  Hopefully that gets my OSS trending in the right direction and less reliant on bandage lenses as a protective moisture barrier.

[Deb 27]

For many years, I wanted to file for disability but hung in there. I was lucky to have jobs that were flexible. I did retire at 63 because I was just too tired and had been sick so much the past year. I wanted to go to at least 65.

[Maria3667]

Still working full-time 20 years after diagnosis. I try to adjust my environment to meet my needs.

Besides ibuprofen, pilocarpine and containers of Vaseline I've worked my way through handfuls of hormones and supplements.

Thanks to low dose testosterone and dhea I've managed to make it this far.

[SjoDry]

I am working FT with both CVID and Sjogren's.

I will also note that we own our business and if it were any other company, I would have probably been fired or forced into disability. Because it is our company, I can take off as many sick days as needed. I have been sick since childhood.

SjoDry

[araminta]

I am retired but would absolutely not have been able to continue working if I had been the way I am now.   I could only have coped with some kind of work which could be done at home without strict deadlines, as some days I am not too bad, other days exhausted