Family

[Reanne]

I don't even know where to start.  I thought my family was mostly supportive, but I guess deep down, they aren't.    I have had it with life right now.  My job is too demanding.  They keep adding more and more to my job and then threaten to "write you up" if it isn't all done.  What they expect is next to impossible in 40 hours, but don't pay overtime.  I have stayed over some and lost many hours of vacation pay.  What is a person to do?  My husband doesn't verbalize it, but I know he expects me to bring in an income and right now I have a mid to low level income.  My family expects alot from me.  I am supposed to be there for everyone, but yet if it's the other way around, they are too busy. 

The most recent incident really brought life into light for me.  My so called grown daughter had planned on coming over one night, but when I talked to her on the phone about it she said, "You're tired, let's just wait until tomorrow." I assumed she meant coming over, but evidently she meant food.  In the meantime my husband called and said, "I'm off early. Let's go take care of our taxes."  Long story short, my daughter is mad because we weren't home.  I didn't realize she was still coming over or I would have called to say we had to do something else.  Now she is "never" coming back or having anything to do with me.  I think it's over-reacting, but between the stress at work and stress at home, I don't know if I am thinking clearly. 

On top of everything else, I think plaquenil is giving me horrific headaches.  I stopped for a week and started back last night.  I work with a headache that felt like a migraine at 5 am. 

Thanks for letting me vent and have my pity party  Hopefully I will be cried out soon and can move on with my day.

[DryEyes]

I don't think you are having a pity party at all.  Seems like stress it coming in from all angles for sure. You have every right to feel the way you do.  In my opinion  family members get so caught up in their own stresses and life they forget about others.  Top that off with not being able to understand just how hard this disease is to cope with adds up to even more stress for you.  Not excuses for them just the way it seems to be.  As much as this disease is crappy at best it does give us insight that healthy people don't or are unable to see.  I wish I could just let them walk in my sjogie shoes for just an hour,  that way they could feel what it is like and perhaps gain some of the same insight we have.  But for now I would just put me first and not allow the attitudes of others to make me feel bad.  Easier said than done but do try    I am sure your daughter will be over to see you.  Is she a young adult? 

Guess long story short  cut some slack and give yourself a lot of slack!   As for work  that is another story all together, seems that is the way of the working world and it isn't right at all  In my humble opinion.

With that said  ====  Go have a "Me" day and enjoy anything you can and that comes your way.  Hope this makes you feel a wee bit better   

[Dolly Dimples]

AAwww, Reanne, your pity party is so typical of many of us here.
    I wish I knew the answer to the ignorance that is shown to people, not only us Sjoggies, but others who are sick..
   Trouble is so many of us look quite good, people cannot see the misery we suffer..

    Employers being the biggest culprits of all... so we have to have a pity party to get vent,

      thats the best part of this site, one knows there will be no cattiness or ignorance shown , just sympathy,
   and understanding.  Sorry but it's fact, those we love just do not understand, and the younger ones are
the worst to comprehend it all..     Reaching out with hugs, Dolly x
   

[Pisces24]

I feel for you!   Family sometimes get used to you being "superwoman" to everyone and it is a rude awakening to them when an illness strikes you and you can't.    As to family, you just have to go with what you got. Maybe they will wake to to REAL life and maybe not. I assume the main topic with family members it not your illness - that can get very trying for anyone to listen to constantly. The only thing you can control is your reaction to them.

As to work, Do you have an FMLA on file? If not I would get one right away from your doctor. It protects you if you have to be out for SJS related sickness so work can reprimand you. I think it also spells out reasonable accomodations for work to make for you due to your SJS. Work has to abide by it.  *I got mine cause when I got the H1N1 in all its' glory my work threatened me with a reprimand if I didn't come in. My doctor was soooooooo ticked he insisted I do the FMLA. You have to watch out for yourself at work because the work entity doesn't care. (My dr suggested I cough or throw up on my boss - but I told him I couldn't hit that far as boss is well away from the HoiPoloi employees in her own office.  )

Most insurance plans pay for a few counseling sessions per year. I would work on setting up a couple sessions with one. He/she can really listen to you (which helps) and help you on how to deal with all the stress you are experiencing. Right now everyone is "pushing your buttons" and you need to learn how to deal with that. I've gone a couple times for work place stress and I also was a caretaker for my folks for many years - so I get stress. A counselor will help you deal with it.

Good Luck!

[eye2dry]

Oh...my ..yes, "crossed wires' with daughters, even the "grown kind".

I have 2 daughters ages 36 and 30.  Sometimes they can be over dramatic.

A funny crossed wire was when my oldest daughter and I made a date for lunch for  the following thursday.

The following thursday I have tomato soup and grilled cheese sandwichs cooking and the table set, looking out the kitchen window every so often for her car to drive up. About 12:30pm, I call her house to check to see if she is running late or could it be she is broke down somewhere along the way.

She answers her phone and asks where am I? Her and my little grandson had made egg salad sandwichs and were looking  out their front window for me to pull up!

I hope venting made you feel much better regarding work and home. Yes, your daughter will be back over.

eye2dry

[Madison Granny]

I think people even our own family members can say that they understand what we are going thru but do they really?  My brothers have alway left taking care of our parents to me and now they still  expect me to do it all.  My son and daughter in law seem to get it.  I just can keep their daughter like I used to.  They seem fine with that.  My husband kind of understands but when he wants to do something really bad he forgets I may not have the energy to do it.  Sometimes he seems like the Energizer bunny.

[Luna]

Reanne, when did you adopt my daughter?? JK.. But that so sounds like my oldest adult daughter.  Im sorry your having such a stressful time. 

Luna

[Doxie]

Reanne, I feel for you with all your trying to do. I think it is very hard to work with Sjogrens, and it seems like work doesn't understand at all. Have you told them you have Sjogrens and some limitations? I like what others said about checking into FMLA. It's best to try to cover your bases and protect yourself.

It is so hard when family or friends don't understand. I wonder if your daughter thought that you were too tired to fix dinner, but yet not too tired to take off and do something else. Maybe she will let you explain a little more about what happened.

Hopefully your family will start understanding a little more how Sjs affects you.  I'm sure they do to some extent, but, maybe with time they will REALLY understand. Hang in there!