Hello

[K]

Thank you so much everyone for your kind replies. You have gotten rid of any uncertainties I may have had about posting here, and now I certainly feel welcome.

I appreciate the comments and advice and will take it all to heart, the hardest part was admitting to myself that I could not get through this alone, that becoming even more difficult when I knew that most people that I know did not like hearing about it. Now with everyone here I'm very happy that I came to that realization and came here.

My rheumatologist is the one who suggested I look online for websites or forums like this, so that I could talk to other people going through similar experiences, but I never really took it seriously until now, not thinking that it would help that much. But I have been proved wrong with just my first post, as your responses, all of them, from the short to the long ones, have helped me already.

[lynnmarie219]

That's a smart rheumy! Give the doc a hand!

[Patze]

Hi K,

Let me also welcome you to the SJS World!  Please do peruse the board as there are just scads of great topics that you might be interested in.

I'm so glad to hear that you Mom is solidly in your corner, that is a big hurdle!  And the rheumy, wow, your are  really blessed!  Keep that doctor!

Please come often as there are a ton of terrific members to chat with, and again, welcome to one of the friendliest boards!

Take care -

Patze

[Chickpea]

Hi K

I wanted to add my welcome and thank you for telling us all about your journey here.  I'm glad you found a good rheumy eventually, and one who understands that there's support and information on the internet.  I was really surprised when my rheumy suggested I got on the internet when he diagnosed me.  I thought it would be full of scare stories and I certainly wasn't looking for a support group.  Then I found this wild lot in SjS World and it changed everything for me!

I was 19 when I first got ill - with endometriosis - and like you I found it distanced me from my friends.  I think Bernice is wise when she suggests that you only contact your friends when you feel well, join in the general chatting, and don't mention your illness or symptoms.  They are not bad people - they just don't know what to say or how to react.  They're scared maybe, and don't know how to sympathise.

Your Mum sounds great - give her a big hug from us! - and if she ever has any questions or needs any support while she supports you, tell her we're here for her too.  Lots of us are 'women in their 40s' (the stereotypical SjS patients) which means lots of us have children around your age so we can empathise with how she's feeling.

Keep visiting us here, ask all your questions big and small.

Thinking of you - Chickpea

voiceteacher - one of the biggest changes for me over the past few years has been with friendships.  I would never have guessed which friends would be there for me, and which would melt away.  Don't give up on your best friend, but don't expect too much from her either.  It may take her time to adjust to the changes in your life, including how much time you can spend together, or she may never be able to travel this road with you. 

Take care - Chickpea

[voiceteacher]

You've all given me some great advice.  I won't expect much from my friends!!!  I think you're right that I should only contact them when things are good.  The part I don't understand about that is that when they are ill, I am the first to be concerned and listen to their complaints and be there for them.  I guess that's the hard part.

[jaygee]

Hi K and welcome.  I, too, read your initial post with a lump in my throat.  But like the others have said, now you've found this place you will come to see that there's a really great bunch of people here who can answer questions, sympathise, provide information and, most of all, understand what it's like.   xx

[Bernice]

Voiceteacher,

I once heard a preacher speaking about illness in a sermon. He said that when someone gets sick people will come to visit and support and care for that person FOR A WHILE! BUT if it's a sickness that lasts a long time most of those same people will soon fade away. Quit coming around!

Well sjogrens is a long term illness. People are only going to want to hear about it for so long, most are not going to want to continually slow their lives down to support us, even hearing about it too often, it takes a lot out of them mentally, especially if you appear to be doing just as fine as them. Though there are exceptions, very few!  And it does NOT necessarily mean they don't care, it's just human nature and we can not truly feel others pain, once again especially when that sick person appear to be fine.

Sometimes we have to cut them some slack, people don't always KNOW WHAT to say. I know I have that problem sometimes when I want to say SOMETHING of comfort, sometimes I just don't know what to say. Some will avoid YOU for this reason too.

Bernice

[Jules48cats]

K
I would like to welcome you to this site too, along with all the others.  I was so glad to find this site too because other people who aren't going through what we are just don't get it.  You can talk and complain about anything here, it seems no subject is taboo.  Sorry to hear you have been going through so much at such a young age.  I was 34 when I got RA and Pretty sure I had Sjogrens around or before that time, as  I had a lot of dental and eye problems.
Anyway good luck at your appoinment and I hope things start to get better for you.
Jules 

[Helen]

K
Welcome to to Sjogrens world

As I read your story, I remembered when I was dx with sjs. I am sorry that you have gone through this and feeling so alone.  We have all had that struggle in one way or another.  You do need to be strong and educate yourself about sjs.  This site is great for education and understanding.  I too am new to this site, and have posted a few time now.  I am feeling more and more comfortable with the member and have learned a few things too. 

Just remember that you always have a friend that will listen here at sjogrens world, and before you know it you too will be offering a kind word to a another new member.   

Keep us posted when you see your doctor

Helen

[harrigan]

K- we hear you!!  You are in a place where you can say exactly how it feels.  Everyone on here has times when they can't cope, hate being ill and are hurt by the response of loved ones.  Keep posting on here - I know from experience someone will always reply and make me feel less isolated.

Glad you found us and look forward to getting to know you better XX Ailsa