New to Sjogrens

[harlin]

Hi all,
I was diagnosed in May and having a terrible time adjusting. I also have fibromyalgia, Reynolds and osteoarthritis. I have been put on medical leave since Thanksgiving and will be off until 11th of January maybe. I am having a time coping with all this. No one understands. I feel overwhelmed and depressed. Does this go with it? I just need to talk to someone with the same issues.
thanks Harlin

[Joe S.]

I am now past most of the issues that you want to discuss. Management comes with time and practice. For me it is alternative therapies. If you are trying to continue working and live in the US, Look into FMLA for a long term illness. While I was still working full time this helped me to continue working. It allowed me to take time off on bad days.

I had an Sjs flair last week and it took me two hours of meditation to bring it under control. It was four days before it had subsided so I could deal with other health issues. Take care of yourself as best as you can.

[harlin]

Thanks Joe for responding. I have filed FMLA but only have 12 weeks. I have used 9 already for the year only have 3 left. Not sure if I will be able to do my job. I am a medical biller for a hospital. Tons of stress. I know this doesn't help my situation.

[Joe S.]

I think that your Dr can set how much time you get. Mine was unlimited but I tried not to use it.

[Pisces24]

I am new to FMLA and just got it a month ago.  I think mine is 12 wks per yr too. I was positively diagnosed with SJS in March 2009.
Corporate America tends to have a very strict "time off policy". I can only have 5 in a rolling calendar year. Anymore I get reprimanded and with 8 you are out the door. They don't care if you are "pardon" puking your guts out or off fishing - unscheduled time is all the same.  I got the flu and had 102 temp and was told by work I had to come in or get a reprimand!!!!!     My doctor's office was appalled and due to my weak immune system from SJS (and I think the dr was really ticked off) I got the FMLA.

As to adjusting, do you mean physically or emotionally?  Emotionally I know it is hard to get your head around something like this - you go through almost like the stages of grief.  As to physically - dd yours come on pretty quick or was it more of a buildup?  Lots of us take an anxiety med and it does help.  Also talk to a counselor for a couple sessions - he/she can help you.  Most insurance pay for 3-4 per yr.  SJS is the "but you look fine" disease and it is hard for others to "get".

Give yourself a break once in awhile. None of us are the person we used to be physically but durn it we are still pretty good.    We are tougher than we thought we ever could be and have a lot better understanding of what is important in life. Check out the chat times and stop in sometime.

[harlin]

Thanks Pisces24
Mine I think I have had for awhile. Been in pain about 3 years. Didn't know I had anything just thought I was getting old at 56. Thought at this age maybe should feel like this, Rheumy said absolutely not! Now she thinks something else is brewing. What else?
Yes I also take Prozac which helps reduce the pain also and I also see a therapist weekly. I guess I have lots of issues.
You are right about "looking fine" except for red eyes and dark circles from not sleeping. NO ONE 'GETS IT'!!!

Called my boss yesterday to tell her dr put me off until Jan 11th and she did not return my call. I guess she is mad. I am a medical biller for a hospital and one of 3. My coworkers are prob upset also. I still have 2 more weeks left and Dr said "maybe the 11th". There is so much stress I am not sure I can do it anymore. Makes me anxious just thinking about it!!

I will certainly ck out the chats - thanks for the info.
Hugs to everyone
harlin

[lynnmarie219]

Hi Harlin and welcome to Sjogrens World!

It sounds like you are doing all of the right things and now you have also found us here! Feel free to come here at any time and read for information and to learn, to talk and vent to others who do understand, and for lots of support and friendship!


As far as FMLA goes...you are correct...it is 12 weeks in any 12 consecutive months (it does not go by calendar year). When you have been approved for FMLA, your boss should not reprimand you for any time taken as long as you are within your 12 weeks and following all of the guidelines set up for you. FMLA protects you for the 12 weeks...but after that it is up to the employer as to what they want to do with your position should you continue to take time off.

I hope that with time you will come to terms with the new you....as has been said....we may need to adjust how we live and do certain things at certain times...but we are still able to live a full and complete life...just with some alterations at times.

Hang in there and be kind to yourself!