[wisconsingal]

Hi all...

I'm feeling lost right now and just need to vent....sorry. I'm not even sure if I'm posting in the right forum as I'm still struggling with the lupus vs RA vs both situation. You guys have been so kind and helpful...I'm just going to keep posting here if that's ok? :wink2:

Joint pain and severe fatigue continue to haunt me and be my worst enemies. I still have a lot of the other sx: fevers, night sweats, my hair is falling out, blood blisters in my mouth,etc....but the overwhelming fatigue and joint pain are just too much somedays.

I made the mistake of going bowling with my family and friends on Saturday. By Monday morning...I couldn't move!! I have been having a lot of trouble with my neck and shoulders (which sounds more RA like). Anyways..Monday morning...I literally could not turn my head.

I ended up calling in to work. I felt I had no choice...I couldn't move. Granted...I have a computer job...but still..there was just no way. Anywho...I returned to work yesterday and was working the phones with my boss. All of a sudden, she shuts the door and breaks out the attendance policy. OH GREAT! We can only have "4 occurances" in a year...and I am up to 5 or 6 for the year. My boss is really nice and it had'nt come from the higher up powers...she just wanted me to be aware of it. I haven't missed for all lupus,etc type problems.....once I hit a deer on my way to work and totaled my car, once my little man was sick,etc. Anyways..if I have any more days..i could potentially get a written warning...more misses yet..could mean termination.

Anyways....I just lost it right then and there. It wasn't so much my boss and what she was telling me.....a bunch of thoughts just started rushing my head....like...how long I've been dealing with this...almost two years, how I can't even pick up my son some days,etc,etc. I started crying and proceeded to cry off and on the rest of the day. My boss was really understanding and encouraged me to apply for an intermittent FMLA. That way..if I need to miss...I can just count it under my FMLA and it won't count against me with the attendance policy. I think I'm going to do it...I love my job and dont' want to lose it because of something I can't help.

Hopefully my plaquenil will start working and it won't be as big of an issue...but even if it does work...I'm sure I'll still have some bad days...being realistic about it. Anywho...do you think that would be a good idea?

Otherwise..just trying to get by the best I can......the fatigue has been sooo bad lately....I feel like I'm walking thru quicksand most of the time. And just the random-ness of the joint pain....my hands can be fine one minute...then the next...I can't even hold a dinner plate.

Ok...enough of being Debbie Downer......it does make a person feel better though. Ok...better run..my shift is finally over

Hugs
Olivia

 

[rosemactier]

Dear Olivia-
I want to start out by saying I too am new to lupus and this website. I recently was diagnosed in July, although dealing with symptoms off and on since 2003. I want to say how very sorry I am to hear how rotten you are feeling. The tiredness still is very hard for me to deal with, not to mention the pain. Your boss has given you some wonderful advice. There is a website
FmlaOnline.com that explains the guidelines and it sounds like you qualify. You have to have worked for more than 12 months and 1,250 hours in the past year. I just wish I could have worked for a company that had more than 50 employees and been eligible too. My understanding of the FMLA is you can not be terminated for missed work when you are on leave. I hope the website gives you the information you need. Please take care and talk to you soon. I also want to say that this website has given me so much support, info, and friendship. I am grateful to have found it.
Rose

 

[Maia]

I would definitely advise you apply for FMLA as your boss is aware of your situation and suggested it... and you should get it. I actually tried to apply for FMLA while I struggled to continue to work and kept getting denied for some strange reason (something about not being specific enough on exactly when and how long I would be off work). I wonder if they fixed that problem with this "intermittent FMLA"? With lupus, you just can't predict when and how long you're going to be sick!

FMLA is for your protection... and your boss has warned you that you need that protection. As long as you don't miss more than 3 months work in 1 years time... your job will be protected.

Good luck and take care... your symptoms very well may improve after a few more months of treatment. And definitely keep posting here! We welcome anyone that suffers from autoimmune connective tissue disease whether clearly delineated as lupus or not sure exactly which one/ones.

 

[debatat]

Hi Olivia, sorry you are finding things so hard at the moment. I feel for those with lupus who work and have to look after their families as well, it can't be easy. I am glad your boos has been helpful and suggested you apply for FMLA. I hope this helps make things easier for you. Hope fully once the plaqenil kicks in, things will be much easier for you.

Take care

Deb