Newly diagnosed and so thankful I found this group!

[Fanciefrancie]

Hi,

I am a 37 yo female who was recently diagnosed with Primary Sjogren's.  I am a proud wife and mother of 3 children, ages 7, 5.5 and 5 months.  Knowing what I know now I probably started showing symptoms around age 18 but I could explain away all of my symptoms.  My dry eyes were because I had LASIK, my 3 root canals and 1 implant were bad genes, my sun rashes where from my sensitive skin.....but, my obvious joint pain and fatigue started 2 months ago.  I thought it was caused by the fact I had a new baby and my hormones were leveling out again.  I was tested by my GP and my ANA tested positive with a titer of 1:640.  More tests and I tested positive for SS-A/Ro.  I was referred to a Rheumatologist who has since officially diagnosed me and put me on Plaquenil.  My Doctor is "hopeful" the medication will alleviate my symptoms and I will find some relief. 

I am so happy to read all of these posts.  I feel like I am understood.  All of these aches and pains aren't made up, they are real and other people have them as well!  And better yet - other people's loved ones have responded the same way as my husband has, he just doesn't take this seriously. 

I am still processing all of this, this forever diagnosis, and I am torn;  I am scared but grateful.  Scared of what I might find or feel when I wake up every morning but grateful because it has given me a new perspective on life.  I only want to expend energy on the things that truly matter.  I don't want to waste a single moment on trivial things.  This is going to be very hard to act upon since I am a "yes" person; saying NO is not in my DNA. 

Thank you for letting me introduce myself and chatter a bit. 

[Bigleyj]

Hi and welcome,

I was only diagnosed last November but the wonderful people here on this forum have been a great support to me, I'm sure they will be for you too. I hope your husband starts to give you some support soon.

I felt the same as you, torn...I guess I still do but slowly coming to terms with this.

I got a chuckle out of your tag line listing wine in your meds gotta laugh when you can.

Cheers,
Jo.

[Princess Tusi]

Welcome too!!
I am also 37 and recently diagnosed - based on symptoms as I'm sero negative. There is so much information, so much scary stuff and lots of "hit husband til he gets it" empathy (if only we had the energy to lift our arms that high....)

Take your time, not every future will be your reality. Allow yourself to grieve what is not to be but don't lose hope!!

This is a fantastic community with a huge range of knowledge from conventional to alternative treatments so be sure to use the search function - if it were a real button mine would've worn out already!

Hugs and best wishes to you

Caroline

[finallyadx]

Hello and welcome.  I too felt like you - relieved to have answers but wondering what lies ahead for me the remainder of my life.  I was 43 when diagnosed - 3 years ago.  I have three children - 11 yr old, 9 yr old and 5 yr old.  My life for the first year after diagnosis was riddled with cancellation of plans, not knowing how I was going to feel, what would happen from one day to the next...but I was started on a low dose taper of prednisone while I started plaquenil.  The plaquenil took six months for me to see a difference but I know many who react much quicker.  I also recently added evoxac for dry mouth and salivary gland issues - it has been a god send for me.

In time you will learn your limitations and you will realize when you can and cannot push yourself to your limits.  I hope you find lots of support in your family and friends.  Not sure if anyone recommended The Spoon Theory for reading for you and your family but I gave it some close family members after being diagnosed so that they could somewhat realize what I felt like.

I hope you can also find a rheumy who is willing to listen and treat your symptoms so that you may find some relief.

Keep us posted.  You will really enjoy this group  - supportive, kind and knowledgeable folks here.  They have helped me in my "times of need" over the last few years when I felt like no-one understood what I was going through in my circle of friends and family.

Kim

[Carolina]

Hi FancieFrancie!

Welcome.  This is the place to help you work things out.  Some people get a diagnosis and the treatments give them the relief and energy to carry on with busy lives.  I would say that is probably the majority, really.

Others of us continue with questions and value the ongoing access to wisdom, support, and even humor, which helps us manage more complicated cases.

So take what you need, Francie.  I hope things go well for you:  you are certainly very busy and have very heavy demands on you.

I'm so glad that Plaquenil is making a difference.   

Hugs,  Elaine

[PattyAnn]

Hi,
I am 44 was diagnosed with minor symptoms at the age of 26, I have had lots of good and easy times through out the years. Every ones story of life with sjogrens is different. There are treatments that will help, try to pay attention to what is going on in your life when you are having bad times, so you can learn what might bring them on. For me I have learned throughout the years that stress is my biggest trigger for a flare. I also notice that any kind of injury can send me into all over pain. Something I think we all need to learn is that we need to take car of ourselves, if you are tired one day try to rest as much as you can, if you push your self too much, the next couple of days can be worse, so take care. I understand this is hard to do with children as young as you have, I've been there. For a mother it is hard to say No, but sometimes we need to say No today so that we can say Yes another day. Take care

[Fanciefrancie]

Thank you everyone.  I truly appreciate yall's responses.  A great way to start the day!

[cccourt1942]

I feel like I am understood.  All of these aches and pains aren't made up, they are real and other people have them as well!  And better yet - other people's loved ones have responded the same way as my husband has, he just doesn't take this seriously. 

This makes and keeps me sad.  Sad in my life, sad in Francie's, and sad for all of us who are perceived "well" when we feel poorly.

Welcome Francie.  You are among friends. 

Enjoy your medicinal wine!
c3

[Ashewoman]

Welcome to the forum. Sorry to hear you have SJS but very glad you found us since you do.  I don't know what I'd do without this group because I don't think I've ever met another single human being in person who had SJS. It's nice to have other people to talk to who get it. I secretly suspect my grandmother had it but she died many years ago with the entire family joking about what a complainer she was. They never knew what was going on with her. And I'm only guessing because some of the symptoms she described were the same ones I struggle with daily now.  All I can say now is that I'm terribly sorry I was less understanding when she was still alive.

But I try to it pay forward now and give as much as I take on this forum, and that's really all I can do to make amends. Be the kind of listener that I hope I get when I need one and so forth, right? This is the kind of club that no one ever aspired to join and yet here we all are holding each other up and lending compassion and support to one another. That's pretty magical to see in action. I hope that this forum is as great a resource for you as it has been for me. Never be afraid to use it and welcome! You belong here. GG