Hello my wonderful on-line Support/Fellow Sufferers,
Today hubby and I took a little CHRISTmas goodie bag to a lady from our church. We are fairly new and have never met them since they were out a lot because the husband has been ill.
Imagine my surprise when I learned that she suffers from Sjogren's. We ended up talking for almost 2 hours. Her symptoms were almost identical to mine except she doesn't have PN. She has something worse . . . the SJS has affected her heart and she had to have a pericardial window. This was something I wasn't aware was part of SJS.
Anyway, it was wonderful to talk face to face with someone who knew exactly what I was saying. We got tickled when we noticed that we were both hoisting our water bottles at exactly the same time. She had never met anyone with SJS either. Our husbands got along really well and had a lot in common (wives with SJS and Vietnam). We are all the same ages and have plans to get together again.
Even though I have a newfound friend who understands, I am still so thankful for all of you for your support. No one knows (except a fellow sufferer) how much it means to know that someone is always there to care and to share in your good days and especially when the bad days come. Thanks again.
Jorja
Wow!! Good for you. I completely get it.
I had mentioned in a post a while back that a lady at work confided in me that she had a rare autoimmune disease called Sjogrens. She assumed I'd never heard of it. Well, I about hugged her. We share a bit, but not too much given that it is a work relationship.
I wish I had a local friend, although I too love all my Sjogrens World friends.
KellyG
"somebody" works in mysterious ways. :D
That is great, Jorga! No wonder you're excited. :D 8)
It sounds like you and your husband have some good new-found friends. I'm so happy for you!
Pisces, I agree with you; sometimes these things happen in the most mysterious ways. ;)
Awesome Jorja!! ;D
What a wonderful connection, and a good payoff for doing good.
Soycoffee
That is super!!! What a nice thing to happen around the holidays. I'll bet they were grateful for the visit too!
I too have never heard of SJS causing heart problems. I thought the possibility of that was with RA and Lupus. I think they are all the same just with different names!!
How wonderful to have someone to talk to in person who understands, and two new friends for you and your husband :)
That is wonderful you found a friend who can relate with you. I have a friend who has sjogrens also. It has done the same to her heart and has gotten to her kidneys. Sjogrens can attack organs.
Luna
That is GREAT news for you!
Thanks Y'all!! I just knew you would be happy for me.
That's why I love this site. You encouage one another; offer helpful advice; rejoice with one another and most of all . . . you UNDERSTAND!!!
Blessings,
Jorja
That's pretty neat Jorja!!
Patze
That's WONDERFUL!! So happy for you!!!
Jorja, You have a friend for life I bet. IRish ;D
Basically, SS can attack anything...doesnt surprise me. This disease is clearly misunderstood. It can act just like lupus-per my doctors. I think we
even have more CNS issues as well?
So glad you met a new friend..one who understands what we are going through. I keep hearing more and more people getting diagnosed with it. This website has been a lifesaver..the support is unbelievable!!! any support and understanding is just great!
Gursie