I'm a first time poster, hello all.

[RobinBat]

Bernice,
Does your grandbaby's mom come too? Maybe she can help out some??? If not maybe you could get a friend or friends daughter to help out for a few hours a day to give you a rest.(teenager) Just a thought. Try to rest up and maybe get some good books or videos that you can watch read together so you can have some quiet time...puzzles good too. Will be thinking of you. Hope it's better this trip. Hugs, RobinBat

[Pisces24]

Welcome to the Soggie Group.  I am fairly new also having been finally diagnsed March 2009.

My gp in 2003 decided my bloodwork #s were strange enough that durn it he was going to find out why. That is when my journey started of going specialist to specialist.  I had for a year one that told me he was sure I had some type of cancer but I wasn't sick enough and didn't have the symptoms he thought I should have.    Hits you like a ton of bricks especially when you think you feel just fine the the dr says you are not!  Well I had a time but got my head around that. Later my gp sent me to a teaching hospital (bunch of specialist under one roof that actually  LIKE puzzles!).  That is where I finally got a firm diagnosis at. I see an immunologist, pulmonologist and rheumotologist now. I would recommend a teaching hospital to anyone as they don't "ignore" you.

I am not on any special medications for SJS but the immunologist has me on "maintenance antibiotics" 2 diff ones at 2 week intervals during the winter. I also do sinus flushes (not icky) which has really cut down on my sinus infections of which I was getting 5-7 a year.  Didn't keep me from getting a bout of the flu though. Sigh!   So far my worse symptom is tons of teeth cavaties.  I am now noticing my "flares" as before I figured it was just allergies.

Sorry you have all this stuff but glad they actually "diagnosed" you. Now you got a label and doctors can't say it is all in your head and you are definitely not alone anymore.

[Dawn1051]

Wow, I have been AMAZED while reading everyone's reply's/personal stories. Each one I can find some thing in it that's me. One thing that surprised was hearing about the sinus flushes and repeat sinus infections, that's a Sjogren's thing? I had no idea!! I have yet another sinus infection right now and they are miserable! I've had my sinus's operated on twice this year because of major problems and also an osteoma removed twice that sat in the sinus cavity itself. But anyway, I had no idea that was part of it...yes another piece of the puzzle that makes perfect sense!!!

And I had to smile about the "Dont stare, BLINK BLINK BLINK"   Just reading your comments Bucky again I had another moment of yes, exactly! I just asked my husband if he or the kids adjusted the brightness or color on the computer screen because it just seems so dog gone bright and it bothers my eyes. Of course they hadn't and everyone else said the color and brightness levels are fine for them.

Bernice I hope things go well for you and your grandbaby. I know how tough it can be and like I've said the worse thing is that no one can see whats wrong with you so they aren't the most understanding at times. Now dont get me wrong, I dont want sympathy from people, not at all. I'd just like them to stop looking at me like I just need a sandwich and all my problems (and heck maybe the worlds) will be solved!

Thanks for the idea of the plugs...I will mention it to my eye dr during my next visit and see what he thinks and hopefully I can get some relief there.

As for re-trying the Plaquenil, ohhhhh boy, I'd be a little afraid to be honest with you.   After my exit only bathroom experience where I was probably the sickest I had ever been, and the week that followed wasn't much better stomach wise. It literally took a week before I could eat right again and to stop having stomach pain and cramping. I lost about 7 pounds after that lovely experience. When I went back in to my Rheumy dr's office to see him I asked him if it was something I said during my last visit to make him angry.   Fortunately he gets my sarcasm) He assured me that no he wasn't being the ultimate passive aggressive doctor and I told him good then I wont be the ultimate passive aggressive patient, so I'll actually sign the checks when I mail in the bill  

I've also read under some of your names the different things that you have an it's interesting to see how much we have in common. (Raynaud's, etc) This site really is a whole new world for me and while it wasn't on my Christmas or "bucket list" I'm still glad to be a part of it. Hey if you have to dry you might as well do it as one big dry collective group!  

Dawn

[JannaLee]

Dawn,

I know what you mean about being amazed at all the things Sjogren's can cause.  When I first read this site, I decided everyone here was a hypochondriac!! 

It took a while for me to realize Sjogren's is a systemic disease and therefore all body parts/systems can be affected.  As time went by, I realized I share many of the issues described here!  And like you said, it started to make sense to me.

Welcome to the family, my dear!
Janna

[Bernice]

No her mom does not stay, this time she will be dropped off to be picked back up two weeks later. The last time, this past summer I went to get her, well I met them in Fla. for a weekend at Disney. I think the 12 hr. plus car ride and full day at Disney in the blarring sun was enough to do me in, then on top of that I brought her back with me so there was no recovery time in between. She stayed for about two months, I think can't remember! During this time I went into a flare that was the worst I have ever had. My baby likes to stay in my lap alot kissing and cuddling, I love this, BUT she has this habit of poking one finger in my arms and legs, well I got so sore I couldn't stand to be touched, pain that made my eyes roll in back of head. This went on the whole time she was here! She has another grandmother here, but she don't always want to go with her. i THOUGHT I WOULD GO INSANE WITH PAIN! There was no escape, she slept with me (body slamming me all night) and spent every waking moment with me on the go, moving nonstop or poking THAT FINGER. That child stuck her one little finger in a part of my knee cap that made me drop to floor, I was messed up from that move alone for months!

I have always wanted a grandbaby, I L O V E this child to death! Just the thought of her makes me HAPPY! She is my pure JOY! BUT I AM AFRAID OF HER!!! HER LOVE HURTS GRANNY!!!!

[kimboloco]

Welcome Dawn, from a fellow newbie!  The plugs are absolutely wonderful, if you can find the right 'mix' of plugs for you (uppers, lowers, both, plugs with smaller drains, etc);.  I have been a little high maintenance in this area accordingly to my specialist...

Kim

[JannaLee]

Kimbo,
Your avatar is hysterical!

Janna