Author Topic: Working?  (Read 10073 times)


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Re: Working?
« Reply #30 on: August 05, 2010, 02:16:43 PM »

So pleased to see you, but shocked to hear what happened to you. How are you feeling now? It's amazing isn't it, we can never do enough, yet they need two people to replace us!



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Re: Working?
« Reply #31 on: August 05, 2010, 02:28:56 PM »
JG - hello!  I was just thinking of you the other day.  So sorry you have been so poorly.  Hope that the rest is doing you good and that you can start to plan for making work more manageable.  It says a lot when it takes 2 (presumably healthy) people to fill your work shoes!

The future does seem scary but we really don't know what it holds.  Keep your chin up and keep posting - missed you!

Kathy - the virtual call centre option sounds brilliant, hope it works out for you.  How's all your plumbing?!  I know you have had a few setbacks but really hope you are properly on the mend now.  Thankyou for always being so kind and understanding to everyone else in your replies;  you're a gem!

I have the best job in the world in August!  My body seems to have adapted to the all or nothing (well, not quite nothing!) routine of teaching.  I can work flat out for 6 - 7 weeks but do very little else except look after the family and my elderly parents, then have a serious recharge of the batteries in the hols.  Every time I wish for a less less stressful and physically and mentally draining job, I remind myself how lucky I am to have school holidays.

Hoping that we can all keep on doing what we have to do  XX Ailsa
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.


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Re: Working?
« Reply #32 on: August 05, 2010, 02:35:44 PM »
Hi ladies - have missed you, but have been lurking  ;)

I'm ok.   I had a terrible attach of the itching yesterday.  I took a shower and would have jumped off a cliff, if there had been one handy.   I get terrible "ants biting me everywhere underneath my skin" about 5 mins after taking a bath or shower.  I cried, I screamed, I writhed for 40 mins.  Doc isn't interested as it doesn't happen daily.

I am putting it down to another SJS gift  8)

Kathy, you've been through the mill with all your surgeries lately.  Hope you are ok.    :-* :-*


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Re: Working?
« Reply #33 on: August 05, 2010, 02:46:32 PM »
Aw Jaygee!  I'm sorry to hear about the job, but at least it tells you what a great worker you are!  I hope that you're feeling better soon.

Hang in there and take care of yourself, okay?

« Last Edit: August 06, 2010, 04:16:37 AM by Patze »
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Re: Working?
« Reply #34 on: August 05, 2010, 03:04:21 PM »
Wow, Jaygee, sorry to hear you have been through the wringer the last couple of months. Hope you are feeling much better now. I agree with everyone else, having to have two people do your job in your absence should tell them something!


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Re: Working?
« Reply #35 on: August 05, 2010, 04:01:50 PM »
I'm sitting here amazed at how much we all manage to do.  I imagined someone finding this site and reading about our daily and nightly struggles - they would be shocked to see that we also expect ourselves (or others expect us) to do paid work.  But what choice do most of us have? 

Jaygee - of course it takes two people to do your work!  I'm just amazed that management worked it out. 

Roetta - what are your husband and teenage daughter doing while you're at work?  What are they doing while you're preparing meals?  And clearing up afterwards?  Maybe you should take photos and post them on a 'wall of shame'!

Ailsa - glad you're getting time to recharge your batteries.  As Jaygee says, so many of us have jobs where you can 'never work enough hours'.  When I used to be a university lecturer we also got long holidays which nearly made up for working 6 days a week, 14 hours a day during term to get everything done.  I'm sure the stress of never quite managing to keep on top of everything - if I was teaching I should have been doing research, supporting students v publishing books etc - plus my subject (WW2 and the Holocaust) contributed to SjS hitting me hard and fast.

Take care - Chickpea


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Re: Working?
« Reply #36 on: August 05, 2010, 07:28:36 PM »
Chickpea - while I'm at work, my husband is at work (and to his credit he does work more hours than I do). During the school year my daughter is in school, of course, but she gets out early. While I am cooking and cleaning they are usually either watching tv or playing on their computers.

When the kids were little I stayed home and I did ALL of the house stuff, which is what they are used to. But I can't seem to get them to understand that a few things have changed.

One - Mom works too now and shouldn't be expected to do all of the housework, cooking, etc by herself.

And two - Mom is SICK.

I would love to be able to do everything for everyone like I used to, but that's just not reality anymore. They are improving though. They are way better than they were when I was first diagnosed. I'm not sure they even believed me then.


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Re: Working?
« Reply #37 on: August 05, 2010, 09:21:25 PM »
I'm amazed as I read all of your posts! Working or not we go through so much.  I am my sole support so I am still working... in a profession that requires a lot of time before and/or after the regular working day. Some days I do ok, others I just go day by day so that it doesn't seem so overwhelming.  I love my job, but my body does protest.  I just work my hardest and don't think about how I feel until I'm done.  Then I crash. 


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Re: Working?
« Reply #38 on: August 06, 2010, 08:07:18 AM »
To those of you who are still able to work, I congratulate your diligence.
 I have reached a point myself where it seem that each new flare seems to take me down a notch that I never seem to recover from.  It's like each flare brings something new that stays a part of my daily life.  I never had the dryness issues, until this flare and it seems they are now here to stay.  This flare has also sapped my energy to point where now I have to limit my activity and split everything I do with little breaks.  The joint pain is much worse too.  I wonder just how much of this will stay after the worst of the flare has past.

I was just approved for SSI disability and I know I'll never work again, and knowing that makes me really miss it.
  I too was a fast paced, nonstop, go getter and I loved every minute of it.  I was a Vet Tech, so I even got to take care of animals while I was getting paid to do it. I could never restrain a feral cat and keep the Doctor safe from getting bit, my hands don't have that kind of grip.  I couldn't hold a syringe steady enough to hit a vein to draw a vein, or restrain a snarling Rottie for an exam.

  But this is my life now, and only I can love my boys the way I can.  Only Mommy can kiss away their boo-boos, or snuggle and pray with them before bed.  Only Mommy can have pj days with popcorn and movies in bed with tons of pillows and snuggly blankets.  So as much as I may have lost, I wouldn't trade what have now for anything in the whole world.

If you are working, just remember not to let your job steal from your future.  Don't let it make you so sick that it strips life away from what you'll be able to do later.  My flares have always left some kind of damage behind, so please don't damage yourself beyond repair.  There will still be life to live when work is done.


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Re: Working?
« Reply #39 on: August 08, 2010, 05:03:10 PM »
Sjogrens53, Sadly your days sound like mine!!!   I enjoy working and literally take it one day at a time too, and am thankful when I complete a week without having to call out.  I never missed time for being sick, until the past couple of years. I know my time is limited for working but am trying really hard to fight the bad days until the Plaquenil takes effect.  It's only been 3 wks and have a long way to go for the 3-6mths (hoping it changes things).  I recently had a knee replacement and was out of work for over a year, I remember all to well how being home all day alone feels and having less income too!!