Sjogrens World Forums

Hello

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

With this poll i want to hear from this group.

Thanks.

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.

I checked unemployed but it should be Disabled/retired.

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

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.

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

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

Hi Warmwaters

Thanks for the suggestion. I have updated the poll.

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.

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?

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.

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.

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.

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

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

I was diagnosed with Sjogren's in 2012, I am sure I had it a few years before my diagnosis.  I worked 35 hours a week as a Registered Nurse. The last two years have been tough for me with joint pain all over, brain fog, peripheral neuropathy, profound fatigue, abdominal pain, muscle pain, insomnia.  I finally "pulled the plug" March of this year. I went out on FMLA for three months and was not able to return as I still couldn't stop flaring. I filed for disability.  I am 49, so it's a very emotional thing for me, not to mention the financial changes for my husband and I. I have been dealing with depression and anxiety with this disease as well.  Three months ago my Rheumatologist diagnosed with me with Fibromyalgia too.  Hopefully many of you will be able to continue working for a long time.  I keep my chin up despite the changes in my life. Things have slowed down for me, I am learning to rest often and not fret too much over little stuff.

I?ve had PSS for 6~ years and it didn?t affect me much until the last year or so. Well, to the point I couldn?t work. I?ve had a myriad of symptoms that may or may not be side effects of SS. I?ve worked 40+ hours since 18y, and rarely went unpaid (due to taking more vacation/sick). Sine the middle of August I?ve worked 5-15 hrs/wk. Debilitating pain, muscle spasms, nausea, headaches, weakness, fatigue, palpitations, dizziness and fatigue.  I?m 42 and considering disability if I don?t start feeling better soon. I?m quite anxious watching my savings dwindle.

I actually don?t know one person in real life (that I am aware of) on disability in my state. I?m naive on the process/what to expect. I?ve read some Sjogrenss stories and that?s all the knowledge I have.

I went through heck trying to get Disability Insurance.
Most attorneys were crooked and didn't help me. (This is California).
Finally, I took the insurance company to Court and this resolved the issue after 3 years.
I stated with Sjogren's Syndrome in1982, with the initial problem of Polyneuropathy, with a lot of pain. What I encountered was
frank hostility when I asked for a change in my job duties. Initially I was told to resign by two employers. I took these
former "friends" to Court and won two cases of disability and discrimination against me. After 10 years, I could no
longer work, and had to retire. One problem I encountered was poor job performance when I began to get Sjogrens Fog. Unknown to me,
I was making mistakes (after 10 years). Sjögren's Syndrome gives many serious problems with your work, and I would recommend going on disability as soon as possible.
The reaction of colleagues and so-called friends is very depressing.

My husband and I own our own business.  I am 67 years old.  We currently put in six days a week and take work home.  My hours are long.  I am surprised that I can get up in the morning, but it is my work that keeps me going.  I recently was sent to a physical therapy center that has a pool with warm water and a underwater treadmill.  For the first time I can walk 30 minutes without any pain.  I feel great afterwards.  Yesterday I went to physical therapy and was forced to see a new therapist.  She talked to me about my age, how crooked I was, etc.  It was very depressing.  Went home and cried.  Never got my pool in.  Because I am now depressed, I feel like I can't move or do anything.  I feel hopeless and old.  The moral of the story is that a healthy state of mind can keep you going just a little bit longer.  Now if I could just lose some weight.  LOL

Judie - if you were doing well after the underwater therapy, please do not give up after a few stupid remarks.   A therapist should be encouraging you, not bringing you down.   Unfortunately not all health professionals are very competent or even very pleasant, as I have discovered in my own dealings with them.

I am the same age as you, and in spite of the Sjogrens problems I don't feel I am ancient and beyond all hope!

I hope to see you posting that you have got yourself back into that darned pool ...

Araminta, I called the owner of the place and told her what happened.  She will make sure that every Monday I am in the pool.  Gosh do I hurt this week!

Very glad to hear this, Judie - I mean about the pool, not the pain. :)

I hope you get some real benefits from the hydrotherapy.

No longer work. Went on disability Sept. 2015 d/t sjogrens and RA.

Friends

Just 18 votes, we can do better. Request more people to vote on this important topic.

Not all of us fit snuggly into a category. For example, I was taken out of work in 2004 on disability, that progressed to full retirement in 2011. Since the initial really bad 4 years, I've been volunteering for various agencies and non-profits (including Sjogren's World), plus providing non-formal care for a few elderly acquaintances (shopping, providing transportation, sorting and regulating medications, etc) and two of these local volunteer positions have recently started providing a monthly "stipend", so I am, in effect, employed again.

The biggest difference is, I'm not confined to a schedule, for the most part (other than one hour a week when I teach a class, occasional meetings, and other peoples doctor's appointment over which I have no control. I am able to stop or change what I'm doing when I need to, rest or divert myself, and (probably most important) procrastinate when I want to LOL

I"m not sure where i'd fit in your poll.

Still working full time and I hope it'll remain that way for as long as possible.

Quote from: Linda196 on October 08, 2018, 04:03:27 AM
Not all of us fit snuggly into a category. For example, I was taken out of work in 2004 on disability, that progressed to full retirement in 2011. Since the initial really bad 4 years, I've been volunteering for various agencies and non-profits (including Sjogren's World), plus providing non-formal care for a few elderly acquaintances (shopping, providing transportation, sorting and regulating medications, etc) and two of these local volunteer positions have recently started providing a monthly "stipend", so I am, in effect, employed again.

The biggest difference is, I'm not confined to a schedule, for the most part (other than one hour a week when I teach a class, occasional meetings, and other peoples doctor's appointment over which I have no control. I am able to stop or change what I'm doing when I need to, rest or divert myself, and (probably most important) procrastinate when I want to LOL

I"m not sure where i'd fit in your poll.

Hi Linda

Thanks for your response. I request to mark this "Part time working due to partial disability" as i think this would be pretty close.

OK, that's what I checked, bearing in mind that I'm 67 and officially  retired.