New scared but happy to be here

[Leli]

Hi everyone my name is Leslie and I likely have sjogrens.  I had a positive Ana, and a positive ss-b, I've had joint pain, tingling, dry eyes, and mouth issues along with ear and now tongue.  Each day it seems something else happens.  I'm not fatigued and my blood work except for the ss-b was all normal.  I'm the mother to one daughter who will be 4 in two weeks.  Lily is her name and she is everything. I'm experiencing all the normal emotions and find myself feeling my glands all day long.  I am so thankful to find this site and I loved the support you all seems to have for one another.  My partner, and many family members don't get it, don't want to get it but really if I hear it's all stress one more time I might scream.  I'm 44, years old and love being active, I do have a stressful job so I'm sure there is some truth to the stress piece. Again thanks to all who created this site, and thanks for let me be a part of it.
Kindly
Leslie

[Madison Granny]

We are happy you've come to join us.  This is a forum that you can learn all about SJS.  If you have any question there is someone who can give you an answer.   I wished I had a little girl.  When they're 4 they are so much fun.  Oh well my son was just as much fun when he was 4.  Enjoy your little girl now as they sure do grow up fast.  My son is 34 married with a 9 nine year old daughter who thinks she's 16.

[Joe S.]

Welcome Leli,

It sounds like you need to wear your polar fleece mumps scarf to bed and read Spoon Theory".

1. Don't Panic
2. Breathe
3. Meditate

There are supplements, vitamins, and minerals that can help. Some of us have posted these and the medications that we use.

[Pisces24]

Any diagnosis when you first get it is scarey. You learn to adapt and live with it but you almost have to go thru like the 5 stages of grief to get to acceptance. Deal with SJS stuff when you have to deal with it. Don't let it be your main ID!

I hope it did not take you long to get diagnosed. Most of us it took awhile - me 6 years. My 6 years was like a rollercoaster so when I DID get diagnosed it was a relief and I hit the acceptance pretty quick on it.

Unfortunately, there are people that will not understand or for that matter accept that you have Sjogrens. I just tell folks that I have an autoimmune disease that makes me more susceptible to get stuff, I can't give blood, I have to be monitored so potential problems can be caught quickly before I get hospitalized AND that it is a cousin to MS. Most people at least have heard of MS.

If you work outside the home, I would talk to your doctor about having an FMLA on file at your work. That way if you are ill SJS related and have to stay home, work can't punish you for it. You have to protect yourself. I got mine when I got the H1N1 in all it's glory and work insisted I come in or get reprimanded. My gp was really really ticked at them.

Look into ways to relieve your stress at work. There is desk yoga. Also a lot of stress is Your reaction to stuff. Most company insurance pays for a few sessions per year with a counselour. He/she could help you with tools on how to deal with stress better. I got one of those jobs at times too.  I've gone through a lot in my life and a few sesssions with a counselor really helped me in those situations.

Please feel free to browse and if you have time join the chat sometimes. You will always find understanding nonjudgemental folks here. WELCOME.

[Duchess]

Hi Leli, welcome

Keep coming, I'm sure you'll feel right at home. Lots of useful info on this site.

New diagnosis are very scary. At first they can be very hard to accept. In due time, hopefully you will learn how to deal with your new diagnosis. We are here to help you.

Keep coming back.

Duchess

[Patze]

Hi Leli,

Let me also welcome you to the SJS World and family!  Please do look around as you'll find scads of topics and information by using the search engine located in the upper right hand side of the page.  If you don't find what you're looking for, don't be shy and ask away!

I'm sorry to have to meet you this way but sure am glad that you've found us!  Give your daughter a hug from us if you would (Lily is such a pretty name ).

I understand your fear and I'm sorry that you're having to go through it, but thankfully your doctor is taking you seriously!  So many members here have struggled for years to be diagnosed (some for a decade or more). 

Again, welcome and I hope that you find this board as wonderful and information as I have all these years!

Take care of yourself now -

Patze

[Bucky]

Hi Leli - welcome!   

As you'll see - we're a worldwide group of fellow Sjoggies (what some of us refer to ourselves as).  We're a diverse group - female and male - with members ranging in age from 6 - 70+ and everywhere in-between.

Our members come from all walks of life and stages of life.  Some, like yourself, have young children, others have teenagers (like me), others children are grown, and we have quite a few that are grandparents / great grandparents. Sjogren's doesn't discriminate and affects everyone, young and old.

Please know when you come here, "we get it".  It seems hard for others to understand exactly what we're experiencing unless you walk in our shoes.

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

Bucky

[Meld256]

Leli,  Welcome from me, too. 

As mentioned, there is a wealth of information here.   I've learned more here than from any medical professional.  As Patze says, please feel free to post and ask anything at all.

What is wonderful about this forum is the amount of respect, understanding and comfort we can give and receive from one another.  Please keep coming back; you will feel right at home!

May I ask if you're under the care of a doctor who is willing to help you with the symptoms you're experiencing? Once we start being treated, it can make a huge positive difference.

Again, welcome!  We're glad you found us, and we look forward to hearing more from you. 

Melinda

[Carolina]

Welcome Leli,

relax

You'll find things coming together.

You'll find ways to ease symptoms.

You'll find sharing and caring here.

And complete acceptance.

Keep us posted.

Hugs

Elaine