Primary Sjogren's, RA and working ::sigh::

[grafxmkr]

Howdy all,

How do you do it?!?

I've been on Plaquenil and an anti-inflammatory for about 6 mos.  My energy level is better as is some of my pain, but I still have flares that make me feel just TERRIBLE.  The scenario of being beat with a board is about right. Joints swell, especially my knees and hands, then I get neuropathy tingles in my arms that hurt.

I have a fairly cush-cush job (art director) but I'm afraid my boss will eventually get "sick" of me being "sick".  I normally will wake up in the morning and just fall back into bed again, take a few advil, sleep a couple more hours and then drag myself in to work.  This seems to happen more during weather shifts so there will be 2 mos of fairly bad attendance.  Then I'm good for 3-4 mos and it begins again.

My works is always done on time, my staff managed properly, deadlines met etc. etc.  I am just so scared with the economy that I will be let go just because I cannot "get up and go" when I have a flare.  My boss knows of my illness, but thinks I just need exercise and a juicer.  Its not like I "want" to miss a couple hours of work and I do manage to drag myself in looking like death warmed over.  I try.  I really do.

::sigh:: I just don't know.  I think I just vented.  Not sure I was going anywhere with it.

[Scottietottie]

Hi grafxmkr 

I really can imagine how you feel. I work part time now and can't imagine working full time, because the fatigue would be a real problem. I'm lucky that my working day doesn't actually start till 10 a.m. and I still have a problem getting up some days. I've only been really late once but I've come close several times.

The pain is wearing, no two ways about it. When I get the chance to sleep in - i do - but then the pain is worse because the painkillers have worn off a bit! What do you take for pain?

Things are different in this country. you can't be dismissed for being ill. Well - you can eventually but it's quite a lengthy procedure and there's what is called 'statutory sick pay' in the interim.

Do you get a Christmas break?

Take care - Scottie 

[eyeamdry]

Hi there, just venting is ok and actually healthy at times.  You told us you were afraid of losing your job and that some days you couldn't make it to work, or go in late.  Also you told your boss of your illness, and he thinks you just need exercise and a juicer.  Well, I think that tells me that you shouldn't let your boss know everything that is going on with your illness.  He isn't likely to take it seriously anyhow.  

I'm not sure if you're considered part time of full time, but there are rules and the Americans with Disability Act they need to consider before just "letting you go."  However, if you don't do the necessary steps required by you......then all protection you may have is off.  Let's just think that you will get better and stronger and none of this will be necessary.

However, if it comes to you not being able to work, this could mean the difference between you being eligible for short/long term disability, the FMLA act and a bunch of other benefits that usually come with a job.  I know we often have people on here where after a long time on the job, they are ready to "throw in the towel."  You can throw in the towel and come up empty-handed.  You can also find out your company's policies for sick time and try to play by the rules so you're not left out in the cold.  Remember, you are not required to tell your boss all your private stuff, including and especially your health problems.    This cush-cush job sounds like one I'd like to hold on to.  Whatever you "do", do it so it's in your favor and not your employers.  Lucy

[quiger]

Hi there, I certainly know how you feel. I worked full time until I absolutely couldn't do it anymore. I pushed myself past reasonable limits, then finally gave it up. You mention you have a cushy job, but the fact remains that you still have to be there everyday and that can take a toll. Especially when you feel bad or when a flare hits. I am not surprised that you have a problem when the weather shifts. So many people say they have a flare when the season changes. 

We can all understand your need to vent. It helps to get things off our chest and especially to others who understand exactly what we are talking about. Good luck with everything. I know that now when I look back on my last couple of years of working, I don't know how I did it. Try your best to pace yourself and if you are overdoing at work, try not to overdo at home. I hope your boss will understand and cut you some slack especially since your department seems to be running so well. By the way, have you checked into FMLA?

I hope you have a nice holiday and that you get some time off and can rest and relax. A good R&R can make such a differnce.    So, vent whenever you need, we understand cuz most of us have been there.

quiger

[puppybreath]

Hi Graf, I went through what you're going through.  I had my job full time for over 20 years.  About one year ago I started working part time to help with the fatigue and aches & pains.  I thought getting to work at 10:00am would be helpful, instead of 8:00am.  It really helped a lot for several months but then I had a flare that didn't or hasn't ended.  I left my job and am hoping to get disability.  I know how you feel.  I called in sick all the time and somehow held down my job, but always felt guilty.   Oh well, what ever happens in your situation, don't despair, you can't help it.  Just do the best you can, that's all anyone can expect and don't feel guilty. Best of luck.

[eyeamdry]

Please follow office protocol as far as paperwork from your doctor, FMLA, etc. so you will be entitled to benefits.  I went from working full time to going on disability several years ago.  Because I researched my company's policies, FMLa etc. I got short term disability and went to full time disability.  I was also entitled to company health insurance via retirement policy and a pension.  My employer wouldn't have cared if I just called in one day and said......"I just can't do it anymore."  I'm not suggesting you work yourself to death, but check out what you may be entitled to.  In my case, I would not have any insurance and would not be able to afford it on disability.  Lucy

[JJ]

Just a word to Eyeamdry,
  I played by all the rules FMLA...sick time, the whole thing..my industry was food services, and as a manager was expected to
work 12 plus hours a day sometimes six days a week. Being that it was a University we had to use our vacation days during
the shut down periods and if u didn't have enough sick time you had to use what was left of your vacation. However, they expect
your doctor to list your limitations...which is where the rub is. As we all know on our good days we have no limitations...how
long we can stand or sit..how much we can lift...and being in the food industry...having a cup of water available to you on a regular
basis is an issue...because you can not chew gum or suck on a sugar free hard candy. I was in this industry for well over 12 years
of my life other than being a check out clerk at the local grocery store...all i know or am educated for. They can force you
out..

JJ