Just dx'd with SjS and the rheumy suggested I read some books on Sjogrens. I got a few, and have been reading them; and also looking around the forum here. What I am discovering is that it could be so much worse... wow there are a lot of heroes on here!
The thing is, I am wondering if it is really a good idea to read up on all the things that COULD go wrong. I mean, now every little thing and I am wondering if this is the SjS or if I'm getting another AI affliction. I mentioned my concern to my hubby and he said he thought it was a terrible idea to read these books.
Still, I feel this need to know what I might have to face, as well as just plain understanding what is going on in my body a little better. But by knowing that I am supposed to feel tired, I wonder if I can actually make myself tired; etc etc. Maybe like a self-fulfilling prophecy? I am sure I am feeling more tired since I got the diagnosis; so what's that all about? Am I allowing myself to admit I'm tired; or am I making myself tired???
Guess I'll go to bed!
Hi Marmotte
Welcome. What you raise is a very valid point. There is a very fine line between being informed and getting obssessed. I personally feel that reading and having knowedge is power but it has to be done from a respectable source. That's where this place comes in. Also some of us have a bit of an upper hand as we are nurses or in the health care field and tend not to be as shocked/worried/concerned about some things as we know what they mean.
I think sometimes we can take our research a bit too far. Especially early on in the investigation and diagnosis stage. I know i did even with my nursing background. Now I look into things and do some research then leave it.
The important thing to remember is that not everything is sjogren's related. We do also get "normal" stuff happening. A lot of people here keep a symptom diary. If you experience things write it in the diary when it occured what happened any presiposing factors. If there is something happening a pattern will show and you can show it to yur doc.
Knowledge is power and gives you the opportunity to make informed decisions. Obsession will bring you down. The trick is finding the middle ground. Its not always easy but you will find it on your journey.
Goodluck and come here often. THis is one of the best places for informed information and decision making.
Pud
Quote from: Marmotte on November 11, 2008, 12:05:59 AM
The thing is, I am wondering if it is really a good idea to read up on all the things that COULD go wrong. I mean, now every little thing and I am wondering if this is the SjS or if I'm getting another AI affliction. I mentioned my concern to my hubby and he said he thought it was a terrible idea to read these books.
A friend of mine said something like that to me, oh, and not to read this board. Some friend huh?
It's better to know what is happening or might happen in the future than not to know at all. At least if you know, you'll be better prepared to handle it if it happens. If it doesn't, all the better.
There are a lot of people on here that should be nominated for sainthood for just having to be that sick...It's a blessing that the rest of us can learn from them, though it's a shame that anyone has to feel like that.
Cheers!
G'day Marmotte, Pud's comments kinda says it all. Learning all you can about SjS is a good idea. But don't believe everthing you read. Come here and ask questions. Look at the previous posts on the various subjects. Knowledge is power. If you feel you are obsessing to much, take a deep breath step back from your research for awhile. Give your brain time to digest what you have learned. Come here and discuss it with your SjS family. This will help you keep things in perspective.
As to your tiredness don't let it take control of you. Learn from others on how to cope. Yep, there will be times that you will feel over whelmed. It happens to all of us. When you are feeling that way come here and cry, shout, vent, laugh. We will alway have an open ear and a shoulder to cry on. That's how you cope with this aliment. By letting others share your burdens.
Seeker
Hi Marmotte,
The girls have given you great advice and I would like to add just this. It's possible you are feeling more tired since you were dx'd. However, what you may be feeling is not so much tiredness as it is RELIEF. Relief that you now know what has been going on with your body and you have started to relax. All that anxiety and stress is subsiding, leaving you tired.
As far as reading books is concerned, I see no reason why you shouldn't educate yourself about something that has affected you. Just learn to separate what is actually happening and what you think it may be. Don't always think that every little problem is Sjs associated. You will drive yourself nuts.
If you develop some unexplained pain that is constant, see your doctor. Let him/her sort it out. That's what they went to med school for. However, don't ever stop asking them if it could be related to the Sjs. When you stop asking, you start being uninformed.
Like Seeker said, when you feel the need to let it all out, just remember
When you're here, you're never alone!
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Pooh
Hi, Pooh, I thought I'd let you know I am a guy.
Seeker
Hi Marmotte
I think reading up and gathering information is being pro-active and quite a normal response to being diagnosed with what is still an obscure and little understood illness. At least you understand a little more now and won't feel as in the dark about things.
It's important not to get obsessed though, take each day as it comes as no two are probably ever the same!!!
This site is a real blessing for information and support.
Wen x
Seeker,
You guys are great too
Pud