New here and looking to give and receive support

Welcome New Member Checkin
1

Hi everyone,

I am happy I found this website and all of you. I am enjoying reading the discussion about Sjogrens and it's comforting to see so many of you who are close in proximity to me.

I was diagnosed in early 2013, but believe I've had Sjogrens for many years. like many of you the diagnosis meant I had to find a new way of living in spite of this disease. Just this year I was also diagnosed with PsA which wasn't surprising since I've had psoriasis since I was 6. It has been life changing and it's hard to figure out where I go from here. Right now, I am dealing with a frozen shoulder. If you've ever had it then you know how painful and debilitating it is.

After 2 years after diagnosis I am still looking for a great rheumatologist and primary doctor who believe there is more to Sjogrens than just dry eyes and dry mouth.

I look forward to making new friends and hearing about how you cope with Sjogrens.

2

So how were you diagnosed?

3

Hi tj1,

I went to the ER one weekend because I was having chest pains and just didn't feel right. I started to explain all of the symptoms that had plagued me for the past 6 years. They ran an autoimmune panel and low and behold positive ANA, ssa and ssb antibodies.

4

Hi MissLynne. I was one of those that went misdiagnosed then outright blown off for years. And yes, it does mean finding a new norm. My diagnosis came from an eye doc that really pays attention. When the day came that he called with a diagnosis I cried (well, for the little tears that I have but the emotion was all there)..but it was partly from sheer relief to finally know what it was, that its real and that there are things you can do. I went through 3 rheumies before I found mine and he is a gem so hang in there. He has helped put together a team (of other specialists) that works well together so I truly feel like I am in good hands.

I think you will find that the people here really are supportive and we pick each other up when needed. Coping is quite the process but its not all bad and sometimes down right amusing. Glad to see you here!

5

Hello misslynne

I am so glad you found our group. My old rhuemy was an hour and a half away and I was having so many problems that he found a doctor closer to me and it has been wonderful. It can take time to get the right team. I hope you find a wonderful doctor and team soon. I look forward to getting to know you

6

Thank you purplebutterfly.

7

I've felt crazy for a number of years and it's so nice to find people who recognize me!! Thanks for being here as they don't have a support group in Asheville, NC.

8

I'm on Long Island in NY and we don't have any form of support group here either. This group has been a huge help so glad to see you here too.

9

Missylynne, it does make a difference in just the few short days I’ve been a member to know y’all are all out there when i feel like j can’t take another step. My eyes are bothering me so much that I can’t stay in long but I’m here sending healing. Comforting thoughts to each of you. Blessings to all.