New

[dawnbr123]

Hi Everyone,
I'm sure you are tired of hearing that we're new at this but I am. Have Sjogrens Syndrome and it sucks! It's interfering with my (once) active life style....Today I went for a 25 mile bike ride with my hubby and I slept the rest of the day. My eyes are on fire. I will now have to rest for the next two days...I have a big charity ride coming up this Sunday and I HAVE to be ready. I never know what kind of a day I'll wake up to...Dry eyes, fat face ( that's what I called this syndrome for the last two years because I didn't know what it was) and just general fatigue.
Sorry, I'm having a bad SS day. I've read a lot of the other posts and I don't have it as bad as most so I should be grateful..I am. Well, got to go...my eyes are not cooperating.
Thanks for hearing me out.
Dawnbr

[lynnmarie219]

Hi Dawn and welcome to Sjogrens World!

Don't worry about people getting tired welcoming and listening to newbies.....it wont happen as thats part of what this place is all about and we were all there at one time.

Now....getting tired of seeing yet another person being diagnosed with sjogrens...that I can honestly say I do not enjoy seeing! I wouldn't wish this on anyone!  

It's good to know that you have been reading through the other posts....hope they are helpful to you...and if you have any questions or want to offer comfort or suggestions to others...jump right on in! This is a safe and comforting place where you can find all kinds of information and friendship!
 

[Scottietottie]

Hi Dawn 

Welcome to Sjogren's world.

Sjogren's is a drag and you will find that you just have to learn to pace yourself. I know that's easier said than done - but it's something we're stuck with - so we just have to come up with coping mechanisms.

Well done you doing a 25 miles bike ride at all! Good luck for your forth coming event - I hope you wake up having a good day!!

I hope you find the site useful and never be worried about what may have been said before. I've been here for six years now but I vividly remember coming here with loads of questions and feeling relief that I'd finally found people who knew what i was talking about!

Take care - Scottie 

[dawnbr123]

Thanks Scottie,
I know I have to pace myself...It's tough. I'm just the get up and go kind of person...Now, my get up and
go has got up and left. I'm just so used to having so much energy and now I'm zapped after an easy bike
ride. I guess I just have to get used to that feeling. My problem is when I do get up and feel good, I take
advantage of it and go out and ride for hours and hours, then I pay for it the next day.
Well, I'm ready to call it a day....got to get up at 5 tomorrow and try to work.
Talk to you later.
Dawnbr

[newhorizons]

Hi Dawn, You sure picked an appropiate name for SW site.  You get up at dawn;        some of the bunch here can't go to sleep until dawn.  Finally, a CPAP breathing machine has given the opportunity to rest at night... Sjogren's sucks!

WELCOME ABOARD, DAWN...

[Joe S.]

Welcome Dawn. Put your goggles on and remember to drink lots of water during the trip. You may have to consider this your last big ride until you find your level of management.

Some of us have listed our illnesses and what we are taking in our signature line. I have chosen the alternative therapy route.

[dawnbr123]

Hi Joe S.
What is the alternative therapy route? I'm taking plaqinil and naproxen twice a day...It helps with my
swollen glands. I just can't imagine NOT riding my bike. i have over 2500 miles logged in this summer. This
is done in between a full time job and a family. I'm addicted...It's going to take more than Sjogrens to make
me stop. In the winter time I coach a Rec dept ski program once a week and log in many miles of skiing on
my own or with my husband and sons and friends. I can't stop. I find winters easier on my eyes because of
the cold...i guess.
Will sjogren's get worse? I read some of the other posts and I'm worried...really worried. I just don't want
this any more...Make it go away!

[Billydude]

Dawn,  you are so lucky that you can ride 25 miles.   Be thankful for that.   Just be aware and in touch with your health and take the proper medications so it doesn't progress.   We are all different so there is no rule book.

[lynnmarie219]

More power to you Dawn...if you can still do all of the things you love...go for it as it may never progress any further for you!

So please  don't let the other posts scare you...this sjogrens thing is so individual...we never know how it will affect any of us...some of us get very few symptoms...some of get more severe involvement.....so keep doing everything you can as long as your body says its ok!

[Meld256]

Welcome, Dawn!

I'm a newbie, too.  You'll find lots of great info. here and support.

No, don't be frightened by what some others may be going through. Everyone is different, just as lynnmarie said. You may get along for a long time with very few symptoms.  I know those can be aggravating when you are so used to being very active.

Just be good to yourself and listen to your body. You seem to have a lot of determination and that will help you immensely.

Hope your weekend is a good one,
Melinda

[Bucky]

Hi Dawn - I too want to welcome you to your new Sjoggie family.

Hope you find this site helpful to you on your Sjogren's journey.  We are a world-wide membership, varying in age from 5 up into the 70's and maybe beyond. 

Some have very mild symptoms, others - more involvement.  Take each day as it comes and continue to do the things you love to do as your body allows you too.

Bucky

[eyeamdry]

Dawn, if you do not have air-tight goggles, you need some especially with your biking, skiing etc.  Many of us wear goggles inside to help our eyes stay a bit moist.  Do you wear glasses or goggles such as ski or motorcycle goggles?  Lucy

[Joe S.]

Dawn, I have chosen to support my immune system
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, Goldenseal, D3, B12, Alpha Lipoic Acid, Acetyl L Carnitine, Carrot Juice, Aleve, Reiki, reflexology, massage, meditation, tonations.

[dawnbr123]

Hi again!

I'm back from my 50 mile bike ride. It was soooo cold. The temp was 45 degrees. We dressed as warm as we could. I forgot to bring leggings
so I rode in shorts. It was cold but after we started biking we were okay. I had my pic taken with Patrick Dempsey from Grays Anatomy. He's a
hottie!
It was a long day. Rode the 50 miles and then drove the 6 hours to get back home. I'm pooped! My eyes bothered me a bit...My biggest issue
today was my mouth. I'm full of blisters. So....this girl is going to bed.. Good night all! I'll try and post my picture tomorrow..

Thanks for all the helpful advise and encouragement...

[Joe S.]

I am glad that you had a great time!