Author Topic: Do you work full time or part time or unemployed?  (Read 635 times)

happylife

  • Full Member
  • ***
  • Posts: 135
Do you work full time or part time or unemployed?
« on: September 23, 2018, 12:06:42 AM »
Hello

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

With this poll i want to hear from this group.

Thanks.

Judes

  • Newbie
  • *
  • Posts: 32
Re: Do you work full time or part time or unemployed?
« Reply #1 on: September 23, 2018, 07:21:56 AM »
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.

  • Hero Member
  • *****
  • Posts: 7564
  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD, ptsd
    • Chakra Force
Re: Do you work full time or part time or unemployed?
« Reply #2 on: September 23, 2018, 09:34:56 AM »
I checked unemployed but it should be Disabled/retired.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, Goldenseal, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 12986
Re: Do you work full time or part time or unemployed?
« Reply #3 on: September 23, 2018, 06:44:58 PM »
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

  • Hero Member
  • *****
  • Posts: 1929
Re: Do you work full time or part time or unemployed?
« Reply #4 on: September 24, 2018, 10:01:02 AM »
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.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Scottietottie

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 9144
Re: Do you work full time or part time or unemployed?
« Reply #5 on: September 24, 2018, 11:49:23 AM »
I'm retired - but was working part time when I left work as I found a whole work week too tiring.  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

warmwaters

  • Hero Member
  • *****
  • Posts: 1856
  • Just keep swimming - Dora
Re: Do you work full time or part time or unemployed?
« Reply #6 on: September 25, 2018, 07:34:28 AM »
I'm not unemployed, I'm disabled enough to not work. Also, retired seems like another missing category.

Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

happylife

  • Full Member
  • ***
  • Posts: 135
Re: Do you work full time or part time or unemployed?
« Reply #7 on: September 25, 2018, 08:08:42 AM »
Hi Warmwaters

Thanks for the suggestion. I have updated the poll.

markt

  • Full Member
  • ***
  • Posts: 114
Re: Do you work full time or part time or unemployed?
« Reply #8 on: September 25, 2018, 08:45:28 AM »
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

  • Full Member
  • ***
  • Posts: 135
Re: Do you work full time or part time or unemployed?
« Reply #9 on: September 25, 2018, 09:32:21 AM »
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

  • Full Member
  • ***
  • Posts: 114
Re: Do you work full time or part time or unemployed?
« Reply #10 on: September 25, 2018, 10:23:46 AM »
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.
« Last Edit: September 25, 2018, 01:36:35 PM by markt »

Deb 27

  • Hero Member
  • *****
  • Posts: 645
Re: Do you work full time or part time or unemployed?
« Reply #11 on: September 25, 2018, 03:43:14 PM »
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.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  prozac, Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, alpha lipoic acid, multi vitamin.

Maria3667

  • Hero Member
  • *****
  • Posts: 672
  • Good advice is one thing, applying it another
Re: Do you work full time or part time or unemployed?
« Reply #12 on: September 26, 2018, 04:21:15 PM »
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.
50. Lyme's (1998), Sjogren's (2003), hypothyroidism (2004), osteoarthritis (2016), DES-daughter, GAD. Pilocarpine, natural thyroid hormones, 25mg quetiapine, low dose testosterone, 2.5 mg dhea, supplements. Endometriosis, cherry angiomas, macules. Allergies: nickle, methylisothiazolinone, latex

SjoDry

  • Hero Member
  • *****
  • Posts: 922
  • "When you are battling with a gorilla, you don't g
    • Sjodry and Parched
Re: Do you work full time or part time or unemployed?
« Reply #13 on: September 27, 2018, 05:46:01 AM »
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
Sjodry
http://sjodry.wordpress.com/

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

araminta

  • Sr. Member
  • ****
  • Posts: 302
Re: Do you work full time or part time or unemployed?
« Reply #14 on: September 27, 2018, 01:18:51 PM »
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
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.