Hi Everyone

[Kaos]

Hi Everyonejavascript:void(0);

I have just joined after reading the forum for the last few months. I am 41 with a hubby and 2 kids. I was diagnosed last year by an ENT who was investigating my hearing loss. I have been fatigued for years and have odd symptoms here and there that were never really investigated and I just though I was a hypochondriac - or just lazy. For the last few years I have know there was something wrong but had no idea what - and I looked healthy.
I didn't even know what Sjogren's was until I was told I had it but no it is like all the puzzle pieces have come together. It is not nice being told you have this but it is a relief to know what you have is REAL.
I have recently had a short course of prednisone and combined with summer holidays I am feeling very good at present. My biggest problem is pacing myself and not over doing it- not good at that.
I love reading about eveyones experiences and love the humorous topics. I was down in the dumps after being diagnosed and this forum was where I first laughed! This forum has also been a wonderful source of information- Thanks

Kaos

[Shani]

Hi Kaos.

Welcome to the boards.

I'm glad you found us and I'm sure you fit here perfectly!

If you ever need a listening ear or a shoulder to cry on, we'll be right here.

Lots of love and big hugs to you!

Remember that laughter is the best medidicine.
We have a lot of comedians/jokers here at times.

[Carolina]

Hi Kaos:

Welcome to the Forum.

It is so hard when what is happening to us is so persistent and yet elusive.  Am I imagining this?  Or over reacting?   Or just plain lazy?

You have a marvelous ENT!   So many doctors have no clue about Sjogren's, let alone think to look for it when the patient is presenting with hearing loss.

I am one of the many who have never been sero positive for Sjogren's, and yet I have many of the problems.  I even have hearing loss, with no explanation.

Prednisone can surely make you feel better, but it doesn't make the condition go away.

Pacing yourself is key, and yet I honestly think that it is one of the hardest things to do.   

Since the condition isn't always the same, it's hard to know when something will turn out to be too much!   

And stress, even good stress, isn't always controllable.   Stress happens, life happens. 

And many of us have found new and puzzling symptoms (I was diagnosed with blepharitis last year....I didn't know i had it, or even what it was!).

Most of us have put together a system and some tools for making life easier, especially for the dryness issues of our eyes and mouths.

There is lots of technical and practical information and advice here.

And we all know that laughter and hugs are essential to our well being.

Welcome, Kaos.

Love your name.

Keep us posted!


Kisses

Elaine

[Joe S.]

You may find comfort in reading "spoon theory". http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

[Bucky]

Hi Kaos - welcome to your new Sjoggie family.   

As you have noticed - we are a global community made up of both female and male members who are all on this Sjogren's road together.

I'm glad you decided to "join" us after reading the posts for the past several months.  There is a ton of information here and if there is something in particular you are interested in, if you put those word(s) in the search box to the top left of this page, it will take you to previous threads about that topic.  If you can't find what you're looking for, by all means, start your own thread.

How lucky that you are on summer holiday right now.  I live in Illinois, USA - and here, we are in the middle of winter.  Although, today we're suppose to get up into the low 60's (16-17 Celsius) - which is unseasonably warm for us.  The constant changing of the weather is hard on us with Sjogren's.

As time goes on, you will be able to figure out which things you do that require more energy and will have to pace yourself.  There are days where I can go, go, go and get a lot accomplished - other days, I don't want to do anything.

You mention that you have 2 kids.  I don't know how old they are, but it's never too early or late to have them pitch in and help you around the home with laundry, cleaning, setting the table, dishes, etc.  I tend to think that being the "mom and wife" means I have to do everything . . . WRONG . . . other people live here too and they should be helping too.  They may not do things the way I would do them, but . . . . 

I hope you continue to find this site helpful to you on your Sjogren's journey.

Bucky

[Scottietottie]

Hi Kaos 

Welcome to Sjogren's world.

I thought I was lazy and my docs thought I was a hypochondriac for years so I hear where you are coming from. Now you've got the unwanted label - do keep in mind that you are exactly the same person today and you were yesterday and the label may make life easier when dealing with the medical profession.

I hope you keep feeling good. There is life after SjS!

Take care - Scottie 

[Kaos]

Thanks for the welcome.

I love the spoon theory - used too many yesterday - so used less today 

Bucky my kids are 12 and 15 and yes they have had a crash course in housework and they are responsible for all the evening tasks when mum has no energy left. They know some days they need to help more than others although I don't like to burden them too much - its all about balance.

[Joe S.]

Now to help your family understand, give them a copy of spoon theory.