Newbie

[lolynn]

HI,  I am new to this group.  I was diagnosed with Sjogrens about 10 years ago after seeing many doctors.   I also have Fibromyalgia, Hypothyroid, and restless legs.   I am 48 years old and continue to work a full time job.  I live in pain most of the time. I get fatigued at times and my joints and muscles hurt most of the time.  I also have extremely dry eyes and mouth.  My short term memory leaves alot to be desired.  I take placqunil, lyrica, evoxac plus a whole group of medicines for the minor problems.  I was recently tested for RA but this test was neg. I tried to get an appt with a Rheumatologist by was turned down because they were full and only taking only the worst patients.  I will try again to get in. 

My husband and kids are very understanding of this disease.   I don't know what I would do without them. 

I have learned to accept my illnesses and move on with my life.  I can't do the things I used to do but have found to things to occupy my time.  I have a new grandson to brighten my days.  I love to quilting and keep busy with this when I can.  I used to love to garden but can't do the physical work anymore.

I find that laughter gets me through most days.     I still get sad at times that my life has changed and I am not the same person I was 20 years ago.  Its hard when people think you are just lazy . I get so I don't let anyone know how bad I really feel.  But it is hard to hide to hide the pain.   

[eyeamdry]

Hi Lolynn-

On the weekend, it can be a little slow on the board as folks get busy doing other things.  But, I want to say hi and welcome to the board.
You will find this board to be the thing that might help you more than anything.  Sometimes the drs don't know as much as we do collectively on here.

Congrats on your new grandson.  I don't have any, but I imagine he will be a lot of fun and new things to look forward to.  Buying cute clothes and all that.
You'll want to keep your job as long as possible, but there  may come a time when you might have to think of disability.  That's not a given because many of the gals on the board work full time.  Many are single and there is little choice.  Be sure to ask any questions in the other forum.  Between us, we know it all.    Lucy

[Joe S.]

I am chiming in to welcome you to the forum. I am glad that you have a supportive family. Pain can be a real challenge to live with. You can live with it as long as remember to breathe.

[Pisces24]

Welcome to the group!

My folks would always use old "sayings" and I use them too. I get funny looks from the younger employees I work with.
I was threatening to take a load of buckshot to the groundhog if he even stuck his nose out of the hole (didn't want 6 more wks of winter) and had to explain to a co-worker what buckshot was. 

I work full time (and lots of overtime lately) banging a computer all day.  All my coworkes know at work is that I have an autoimmune condition that makes it easy for me to get sick.
Do you have the FMLA in case you need it? I got one a couple years ago that is kept on file but thankfully only had to use it once. Long story but in a nutshell: my company has a very strick absence policy and threatened me with dismissal if I did not come in w/the contagious H1N1. My gp about hit the ceiling, was so mad and said you need the FMLA to protect yourself.

Seems you have developed a good attitude and have not let Sjogrens become your whole life. Good for you!

[hootyhu1]

Welcome!
You are very lucky to have an understanding family. Mine is still working on it. (I have just been recently been DX with SjS). I hope to meet new friends here and I hope you do too-Hootyhu

[Bucky]

Hi Lolynn - welcome.

Did you try making a Rheumy appointment on your own?  Some will only take patients if referred by a Primary Care Doctor.  Even at that, it can take three months before you can get in!     I think there must be a shortage of Rheumatologists.

I hope you also have an Ophthalmologist and Dentist on your team to help with dryness issues.  Unfortunately, it's not a one-stop, do-it-all deal with Doctors and Sjogren's - everyone has their specialty.

Enjoy your new grandson - they can give us a reason to keep on, keeping on. 

Laughter is good for the soul - check out our Laughter thread on the Social board - there's some good ones there (plus there is another older Laughter thread from last year - if you do a search in the top left of this page, it will bring it up - along with a slew of other topics about Sjogren's if you type in specific word(s)).

Again, welcome - I hope you find this site helpful to you on your Sjogren's journey.

Bucky

[lolynn]

No I haven't tried to make an appointment to Rheumatologist on my own.  Maybe I will give it a try.  My GP Dr is very good.  He listens and is very caring dr. I have an appt with him in a few weeks.  I will push for another appt.   I have an Eye Dr  that specializes in Sjogrens and dry eye problems.  I have plugs in both tear ducts on the bottom.  This really helps and was paid for by my insurance.  I did try restasis but wasn't impressed.  Irritated my eyes.  My dentist keeps an eye on my teeth.  I go twice a year.  Not much problem w/ them at this time.  After everything I have read now from you guys I get a little worried about them.  I do have very dry mouth.  I take Evoxac for this and have not had a problem.  Right now I am taking steroids.  I had a flare last week and my joints hurt so bad that I couldn't hardly walk.  That was a little scary.  The worst that they have been.  Since fall I just seem to ride a roller coaster of pain.  It never really goes away.  Except when I'm  on the steroids      then life is good.  Thanks for all your help, I really appreciate it.   

[stickgal]

Hiya!! This forum is full of smart and funny people (I'm one of the latter). I will say I was on Lyrica for a very short time and it made my brain so foggy I had to come off of it...so of course now the pain has come back full force. I've been on Plaquenil for a few weeks, so am hopeful that before long pain will be gone again! Hope you find good information and good comfort here with folks who know about what you're going through.

[Scottietottie]

Hi Lolynn 

Just wanted to add my welcome. 

Take care - Scottie