Hi all, ;)
It seems we have quite a few new members recently, and I'm glad that each one of you found us here. It really is a caring and encouraging group, full of friendly people and scads and scads of information!
I try to write to each new member personally, and welcome you properly. 8) From time to time, it seems I am a bit behind in doing that; so to all I've not responded to personally, I apologize. I've slipped a bit lately, and I'm trying to catch up.
Please know that I (and all the staff) welcome you, we are glad you are here, and are interested in getting to know you better! 8) Ask anything you like, and we will try our best to help.
Again, Welcome party to all!! (I need Lynn's or Patze's balloons) :)
Melinda
Welcome all!
I'm sorry you need us, but since you do, I'm glad you found this board. It's a wonderful resource!
I second Meld's big hello...welcome to all the newbies!!
Here are your party balloons! ;)
(http://www.freesmileys.org/smileys/smiley-greet001.gif) (http://www.freesmileys.org/smileys.php) (http://www.freesmileys.org/smileys/smiley-greet006.gif) (http://www.freesmileys.org/smileys.php)
Please see "party balloons" in Lynn's post. :) Thanks, Lynn!
Thanks for the welcome, although I rather not be here...no offense ;)
I am just terrified of all the things I have read of this illness, I seem to have the worst luck when it comes to complications lol
Hi Tivia,
No offense taken. I totally understand...I don't think any of us wants to need to be here, but since we've been dealt all this, it seems the best thing to help support and courage everyone. Or at least, it has been for me and many others! ;)
I also know that thinking ahead of what might come can be frightening. Please know that most times so much of the more severe symptoms may never happen to you. Again, we're glad you found us and hope we can help ;)
Melinda
This is definitely one club we would all rather not be a member of! Ditto on sorry/glad you found us. I have had Sjogren's all my life, and didn't have real significant diagnostic symptoms until I hit about 50 when my eyes went really dry. Luckily, we live in a world of true miracles, and we have medications that are helpful in preventing the really crippling effects of it and the related autoimmune diseases that love to come along for the ride.
Please, please, please keep in mind that the people on this board, for the most part, are much more ill than you are likely to ever be. I believe that most people with Sjogren's are never diagnosed because either they can't find someone competent or don't have the "right" blood results. Also because they never get sick enough that even a doctor can tell!
Besides tracking your symptoms, you should also track the medications and supplements that you take, their doses and how effective they are. Set up a spreadsheet or something, and after you make an entry, e-mail it to yourself (assuming that you keep sent e-mails) in case your hard drive crashes. Do the same with diet changes.
Since you are having symptoms now, especially joint pain, I would ask about getting on Plaquinel ASAP. It is really cheap in the generic form. Always tell your dentist that you have Sjogren's. The eye drops you use must not contain benzalkonium chloride as a preservative, because it will damage your cornea. You need to have an ophthalmologist, too. Tell her/him you'll be on plaquinel and you need a baseline visual field test. (Actually, if they don't tell YOU to get a baseline visual field test, thank him/her politely, leave and find someone else.)
Beware of the nocebo effect. This is where people who are given placebos but told to expect certain side effects, and they then develop those side effects. My advice is to take the medication, take it with optimism, and if something that distresses you develops, only then look up the side effects. The human mind is an amazing thing, and the power of suggestion even more so. Even worse, many people are more afraid of the medications than they are the disease. This is very dangerous to your long term health and functioning.
Sjogren's is a real trickster disease. There are many different symptoms, and as far as I can tell, no two people with it have exactly the same symptoms. That said, there is no reason why you can't have another illness as well, including other autoimmune diseases. They do like to travel in packs! And that said, there is no reason why you can't have some other illness that isn't autoimmune. When you go to the doctor in the future, ask ?If I didn't have (autoimmune disease/s), what diagnosis would you consider? How can we rule that out?? When the mind heads down a diagnostic track, it is good to derail it with this type of question.
Welcome, sorry you need us, and we all look forward to answering your questions and your answering ours. Don't forget the Social Hour for some fun!
Sharon