Hi everyone ! I'm sitting here in a bit of shock not knowing where to turn. I was diagnosed one week ago with Sjogrens and Lupus. I am 40 years old mom of 3 girls, my youngest is 2. I am constantly in pain and feel completely exhausted. I feel like I am in complete denial ... could this all be a mistake??
Thank you for listening... :)
Hi njmom . . . welcome to your new Sjoggie family (as we're called).
It is a shock to be told you have this strange named "syndrome" - you will go through many steps of grieving. Grieving for the life you once had. You may experience some, or all of them.
* Denial
* Anger
* Depression
* Bargaining
* Acceptance
This site has a lot of information here. Not only previous threads about different topics, but also links to various subjects too, plus . . we also have a live chat several times during the week.
Take some deep breathes . . . . we're a world-wide group of mostly women, but we do have some men too who are walking this journey called Sjogren's too. You are not alone - we'll walk along beside you.
I hope you find this site useful to you and that we can help calm some of your fears of being diagnosed with Sjogren's.
Bucky
njmom, welcome. Some of us post in our signature what treatments we are using.
Welcome, njmom.
If you are truly questioning your diagnosis, by all means, ask, research, and demand clear explanations from your doctors as to why they think what they do.
Have your docs offered some kind of treatment plan for your symptoms?
Best of luck to you.
Hi njmom :)
Welcome to Sjogren's world. What you are feeling is quite normal in here. All I can say is - there is life after Sjogren's and you WILL feel better than you do right now. Both Sjogren's and lupus are very individual diseases and are also very unpredictable.
It took me years to get a diagnoses, during which time I brought up 4 kids and they all seem to have turned out OK. I have a lupus/sjogren's overlap and had periods of feeling pretty awful but I also had a period of remission.
I hope you find the site useful. You'll certainly find that it's friendly and supportive.
Take care - Scottie :)
Hi njmom,
Just want to welcome you as well to Sjogrens World!
We are here if you have any questions that you cant find answers to or if you just feel like you need to vent and get things off of your chest. This is a safe and comforting place to be, so feel free to come here and join in whenever you feel you want or need to do so.
Do you mind me asking what type of doctor diagnosed you and what tests he/she ran in order to diagnose the sjogrens/lupus? If it wasn't a rheumatologist...did you get referred to one? This is usuaaly the type of doc we all end up seeing that coordinates our care....so I was just wondering.
Take things slow for now and take the time you need to understand it all. Its a continual learning process...so be kind and patient with yourself!
G'day Njmom and welcome to the family. With me I was not in shock. I had a great sense of relief, being finally diagnosed. For years I knew something was wrong. Even though this is a rotten disease, at least I have a feeling of justification.
Seeker
Hi Njmom,
Let me also welcome you to the SJS World and family! Please do look around the board and hopefully you'll find the answers you're looking for by using the search engine above. If you don't, ask away as there is usually someone about that might be able to help you.
Take care of yourself -
Patze