I haven't been diagnosed yet but I have the symptoms. I can't stop thinking about being sick and having sjogrens, it is consuming my thoughts. Does it ever stop
Hi , sorry you got the diagnosis of SS,
If I am trurhful I'd say that it is always lurking in the back of ones mind, but as time goes on, we learn to cope pretty much of the time. Lots of us only have mild symptoms ( still unpleasant) others have different problems to cope with, so its a case of get treatment, tell your Doctor all that worries you, come here for some sympathy and advice, it helps.
Thing is we have to cope! there is no other way to go. Stress plays al arge part of increasing the problems of SS,
Keep calm, Dolly
For me it does not. Being at the age of 20 and thinking about going out with friends and having fun, I think more about the what ifs and if I should go out, will there be a flare in a few days. just all kinds of questions and the what ifs go through my mind everyday.
Me too. I'm constantly thinking and reading everything I can find on the subject right now. I think I'm hoping I can find something that shows... nope you don't have Sjogren's that it is this and it can be cured. Sigh!
I think it is normal to be worried about getting a diagnosis like this and to be thinking about it a lot. I think after awhile other aspects of living will help distract us from focusing so much attention on it.
Wow ~Dolly said it all~ My flare ups happen when I over do it and I am stressed out. Keep Calm is great advice. Learn all you can about YOUR body. Everyone is different. Find a good doctor that will listen to you and for goodness sakes come back here OFTEN. you don't even have to post anything just read~ I have dealt with this for over 10 years, but just found this site a few months ago What a blessing it has been. After awhile you will find it is just a way of life, you will make changes in what you do. Example I never go to a meeting without something to drink in my hand. Always have drops for my eyes with me.
Hang in there~ :)
Hi, I pretty much think of it throughout the day. Certainly not every minute, but it's always there
Hi Always,
My advice is to expect to live your life normally. Whether or not you are given a Sjogrens diagnosis, it's not good to agonize constantly over your health issues. Take a break from your researching, and go shopping or go for a walk! Call a friend! Make some brownies! Read a good book!
I hope that your symptoms are temporary or minimal. Best wishes for getting the answers you need from your doctor. If you do have Sjogrens or its symptoms, you can find a great support group here. You can still have a happy life (and you won't always think about being sick!)
Hang in there,
Cheryl
Difficult not to think about it when the eye drops bottle is empty long before it used to be! It's just ever present: struggling up staircases, things slipping out of my hands, words twisted from brain to lips. It's hard not to, I find it difficult to relax much right now.
I understand that; I can't stop thinking about my health because I have severe symptoms that (a) keep me in pain every day, some days better than others; (b) make breathing difficult at times; (c) have HORRIBLE fatigue; (d) battle nausea daily; (e) have lost so much hair I now wear wigs; (f) have two young children who don't understand all of the above ... except that mommy wears wigs now!
For me, it's adjusting to a new normal. I don't read obsessively about lupus or Sjogren's or any of this autoimmune stuff anymore; I'm not consciously worrying about the what-ifs of the future but I am sick on a daily basis. Kind of hard NOT to think about it daily!
Quote from: Cheryl on January 15, 2013, 04:02:41 PM
Hi Always,
My advice is to expect to live your life normally. Whether or not you are given a Sjogrens diagnosis, it's not good to agonize constantly over your health issues. Take a break from your researching, and go shopping or go for a walk! Call a friend! Make some brownies! Read a good book!
I hope that your symptoms are temporary or minimal. Best wishes for getting the answers you need from your doctor. If you do have Sjogrens or its symptoms, you can find a great support group here. You can still have a happy life (and you won't always think about being sick!)
Hang in there,
Cheryl
Thank you Cheryl. I like your thinking.
Quote from: Cheryl on January 15, 2013, 04:02:41 PM
Hi Always,
My advice is to expect to live your life normally. Whether or not you are given a Sjogrens diagnosis, it's not good to agonize constantly over your health issues. Take a break from your researching, and go shopping or go for a walk! Call a friend! Make some brownies! Read a good book!
I hope that your symptoms are temporary or minimal. Best wishes for getting the answers you need from your doctor. If you do have Sjogrens or its symptoms, you can find a great support group here. You can still have a happy life (and you won't always think about being sick!)
Hang in there,
Cheryl
Yum! Brownies! Thanks, Cheryl. ;)
Often. Watching TV, fun with family, visiting with friends all help.
There are times when it's on my mind more then I think is good for me.
I have not been diagnosed yet either and am still hoping that blood tests miraculously improve and I don't have an autoimmune disease. Wishfull thinking, I know. I can hear my rheumy now " still in denial aren't you ?"
My symptoms are mostly just annoying at this point , Plaquenil has helped greatly with fatigue and joint pain.
Actually I think more of my pain is tendons rather then joints. Still don't quite know the difference.
In my case and I know everyone is different, it helps to stay as busy as I can. I feel better mentally when I have accomplished something. Keeps me moving forward and the "what if" thoughts in check. Of course this could change tomorrow and I completely understand wanting a diagnosis or an " all clear" being in limbo just doesn't work that well for me.
How can I not when my disease puts it to the front of my mind every day?
I would love to not think about, but it brings itself to my attention from the moment I wake up to the moment I go to bed at night!!
Yes - ofcourse! I have so much more in my life than that. It's a factor that I have to deal with. But I still have all that others have - work, family, friends etc.
Brownie recipe to make you forget everything else:
2 sticks of butter, melted.
2 cups of sugar
1 cup flour
4 heaping tablespoons cocoa powder (in my case, it turns into 8 Tablespoons. I haven't heard any complaints!)
Put butter, sugar, flour, cocoa powder in 9X17 inch pan. Put depression in middle, add 4 eggs. Mix well. Add nuts if you want. Bake at 325 degrees or so (F) for about 45 minutes until a toothpick comes out reasonably clean.
(Sorry, Metric readers. The U.S. was too stubborn to go metric when we should have. )
Sharon
I have to admit that I do sometimes forget about my sjogrens. This is because my weakness from my myasthenia gravis will be bad and I have to take care of those issues first. Also, when I have infections caused by my low t-cells then I have to deal with that.
Actually, there is always something that will nag you with the autoimmune issues. Some days the issues aren't so bad and other days or weeks they take over your life. The good thing is that you still have to deal with the other mundane everyday things in life so we have other things to think about no matter what.
Also, if you have other family members with health issues they can come before your own health at times. I do think that the amount of time we spend obscessing or thinking about our condition is sometimes under our control. It does help to give all this stuff up to a "higher power" so that your life is not totally controlled by illness. We all do the best we can and we can all do better at some times. Good luck to all. Irish