Hi everyone. A new member from Australia.

[bookmark]

G'day to all. 
My name is Jan & I am 54 years young!  
I have recently been diagnosed with this thing called Sjogrens Syndrome by my dentist. Went to see him for my annual check up, & not a moment too soon, as he said my teeth are rotting & I need urgent work done!  I said what?  Only saw him a year ago, & no signs of this then!  I have to have 8 fillings, then after that, will have to have the professional cleaning done every 3 months, if not more.  All depends on what his dental hygienist & him decide. 
I have a very dry mouth & extremely dry eyes.  Was diagnosed by my optometrist with dry eye syndrome a couple years ago, but I am wondering now if I really do have dry eye syndrome, or if my dry eyes are all to do with this Sjogrens. 
My mouth is so dry that I choke when eating & have to swallow my food with copious amounts of water.  Can't get it down otherwise.  My mouth is drier than a bloody desert!  Whoops! Sorry.  I have heard that you guys in North America find this 'b' word to be offensive?  Its not offensive to us here & we all use it in general conversation all the time, both men as well as women.  Bloody is known as the great australian adjective   Its real good for letting others know just how we are feeling!
My dentist has recommended Biotene Oral Balance moisturising gel.  It does help.  Kind of.  It gives me some moisture for about an hour or so, then its back to a mouth as dry as a desert again! 
He also advised me to use Colgate Neutra Fluor 220 mouthwash.  This contains zero alcohol, & I find it good.  Finally!  Something that doesn't burn my tongue! 
For my eyes, I am using Systane Balance lubricant eye drops.  I am a big fan of these.  They are tremendous.  The best drops I have come across.  They somehow adhere to the eye, & keep my eyes moist for hours.  I highly recommend these to anyone with sore eyes. 
I can't use lipstick now as most of it just ends up on my teeth!  Not a good look!   I can't smile nicely like I used to & my smile used to be the best part of me, so I am very depressed about this!  Can't give my husband sexy kisses anymore - I am sure when he kisses me he thinks he is kissing sandpaper!
As for toothpastes, I have found that I can't use any with fluoride or whitening agents.  They just burn my mouth something shocking!  Finding fluoride free toothpastes here in OZ is easier said than done!  I get nasty little mouth ulcers from these toothpastes & the bloody things last for days!  And then they start to bleed sometimes!  I have found a fluoride free one at K Mart & am really happy with it.  I just hope lots of people buy it, or else it will end up off the shelves!  Very reasonably priced too.
I am new to forums & never used them before.  I am too old for all this computer stuff!   But I try to get my head around it   I like to think of myself as computer illiterate!
I am looking forward to meeting new friends thru here.  Would be nice to share emails if you wish, or just chat on here.  I don't mind. 
Thank you all for taking the time to read this message. 
Cheers!
Jan. 

[Joe S.]

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[Cheryl]

Hi Jan!  Welcome to a great site.  I'm sorry to hear that you are having serious dryness issues  .  You are in good company, though.  I hope that you get some help soon; do you have a rheumatologist? He or she can prescribe something to help you make saliva (I take Evoxac.  Another choice is Salagen.) As you browse the forum here, you will learn all kinds of tips from everyone else.   We look forward to getting to know you.
Cheryl

[star723]

Hi Jan~ your story is my story~ I was in my late 40's when my dentist said I should look into this sjogrens thing with my doctor. I am now 55. My teeth are giving me fits right now.  I had a root canal done last week and will have a tooth pulled next week.  Fun time ~

It was a blessing the day I found this site.    The people on here are Awesome. 

Welcome~
Debbie

[eyeamdry]

Hi Jan-

Welcome to the Sjogrens Board.  Sorry you have to be here though.  About the (b)loody word.............I don't think we find it offensive--just that we don't use it like that and when someone does, we assume they are English. 

Lucy

[Bucky]

Hi Jan - welcome!

It was my dentist that first suggested I be tested for Sjogren's as his instruments stuck to my teeth and inside cheek during his exam.  I too need lots of liquids to get food down - it just won't make it on it's own.   

We have several members from Australia - hopefully, they will pop in and introduce themselves.

This site has a wealth of information about Sjogren's and the members who come here, literally from around the world, share their stories and experience as we live day-to-day with Sjogren's. 

No two people present the same with Sjogren's, although, many of us have very similar stories and experiences.  What works for one person, may not work for another - often times, it's by trial and error to see what products help us deal with Sjogren's on a day-to-day basis.

I hope you find this site helpful to you on your Sjogren's journey - please know, we're all on this same road too . . . some have just traveled it longer.

Just an FYI - if you are interested in chatting live with other Sjogren's members, there is a Euro chat on Wednesday evenings, and other chats on other days - you can see the schedule by looking at the link under my name.

Bucky

[bookmark]

Thanks so much to everyone who has replied to my message.  Joe S, Cheryl, Debbie, Lucy & Bucky - lovely to meet you all  
I am enjoying reading everybodys messages.  So much stuff out there to try!
I have yet to see my doctor about Sjogrens.  Only been diagnosed by the dentist late January.  Am in the middle of all this dental work right now.  I go see him once a week until my teeth are sorted out.  I will be part of the bloody furniture at his surgery before I am done!
For all of my life, I have had bad reactions to most doctors drugs.  Sometimes the side effects are a lot worse than the complaint. 
But I will talk to him about my Sjogrens diagnosis when I do see him though.  It costs a lot to visit a doctor here in OZ.  Something like $60 for 15 min appt.  Then there is the cost of the scripts.  Another $30 on top of the $60.   Things start to become very expensive, very quickly.
I don't like putting any kinds of drugs into my body.  I try to live as natural a life as I can.   
I am going to try something different to try to beat this Sjogrens.  I am going to make an appt to see either a naturapath or a homeopath, see what they can do for me.  Could be very interesting if some of their stuff works.  I shall let you all know what I think, once I start.  Nothing ventured, nothing gained, eh
You all have a nice Saturday.  When you all wake up.  Its the wee small hours there now.  Here, its nearly 6pm Saturday nite & I am off out to see my friends now.  We have a 'girls nite in' every Sat nite.  Watch a movie, have some pizza & dessert.  Its fun.  It will take my mind off my dry mouth for a while
Cheers!
Jan.

[aussie mum]

G'day Jan,

You guessed it....I'm another Aussie, from Sydney. Actually it's my daughter who has SJS, but I'm the one who comes on here to get the advice. You'll see that there are a lot of very knowledgeable people here.

Where are you from???

Take Care
Aussie Mum

[CMNK12]

Welcome Jan,
Sorry you have to join us, but this is a great group of folks and a very informative site. So jump on in and post away we are here for you.

[eija]

Hi Jan, and welcome

I'm "between" you and the Americans - from Finland! My godson is in Australia at the moment, for about three months more (and by the way in need of a job, in case you would know something in Sydney).

Sorry about your problems with the teeth. I know pretty much about those, too Besides, I have a nasty fear of dentists so I have to take some sedatives each time I go there. And you know, my grandfather was a dentist! Biotene toothpaste is the only one I can use at the moment - even the mildest ones from the "normal" category did to my mouth what you said: Burning and ulcers.

[maiestro]

Another aussie - from WA and 32 years old.  I would type more but my eyes are screaming at me to put the computer away!  Just had to say hi so I can come back to this later

[grammad97]

Hello to you!
While I enjoy meeting new people it really saddens me there are so many of us dealing with sjogrens. Our symptoms and treatments are all different and what works for some may not work for others.
I have been diagnosed since 2008 for sjogrens. I was sickmuch earlier though with it and unfortunately like many of us I got tested for everything and told I had other illnesses before one doc got it right.
The dental portion should be covered under our healthinsurance since its a medical problem however no insurer will allow it.
How do things work in Australia?
nice to meet you.

[Pisces24]

Welcome to the group!
I first had an inkling something was up when I went to the dentist and had 5 cavities! Up until about 10 years ago I never had one and I took less care of my teeth than I do now. But now no matter what I do,  it is still 3-5 cavaties per year - patch, patch, patch. I also cannot eat a sandwich or a sub with bread without drinking water between bites.   Just prior to that, I got so I couldn't wear my contacts any more as they would gunk up. So, I am back to wearing glasses now.

My regular dr did not like my blood work #s that had been creeping up or my getting so many sinus infections and was determined to find out why. 6 years of going to "so called specialists" finally resulted in my being diagnosed with Sjogrens from an immunologist at a teaching hospital in 2005.

As to words, I am 55, in eastern Iowa, and use old tyme phrases, I guess because my parents used them.  Ever hear: that dog won't hunt or more irritable than a wet cat or maybe burning the candle at both ends?? I usually have to give explanations to the younger folks I work with (I'm 55).  The old days were a lot more "picturesque" in speech. 

[Farmgal]

     Welcome Jan. I am fairly new here myself.  Also started with dentist visit, still waiting to get in to rheumy.  Few more weeks....
     And you are never too old to learn new things, especially to join us and chat.  My FIL is over 80 and I am teaching him computer skills.  LOL
 

[susanep]

Welcome Jan, and all others that are new. I am a regular on here, but since my mother died last March, I am on and off with helping my dad, being with my  husband, 5 dogs, and 1 cat, and visiting my son and daughter in law, and most of all just trying to keep my sanity. 

I understand about your many symptoms as I have them too. I am sorry you have to have all this. I am glad  you found us, and hope we are a comfort and helpful to you, and others new here also.

susanep