I feel quite shell shocked now, I was absolutely fine Monday, Tuesday and Wednesday - today feeling quite disconnected, not sure why. It was what I was expecting completely, well if they hadn't confirmed SS I would have been more worried as something is wrong!
Anyway just thought I would tell you all. Apart from family you guys are the 1st to know! :-)
I suppose I can be a "real" member of your gang now!
Hugs to everyone - you see that isn't me not usually massively emotional but just wanted to say that!
Vittel..... just want to say hi. It is somewhat of a relief to know why certain things are happening. Glad that you found this forum because there is such a volume of good information here that can make it easier for you to deal with the SS. Plus being part of a group a people who truly understand and can share is really the best.
Hi vittel I can understand how you are feeling>I feel sorry.But we are lucky to have all each other to help one another to learn to live with this syndrome...
Thanks very much - I had already discussed everything with family - sorry Terri for the confusion - just said you were the 1st to know apart from them! :-)
Thanks for the link though I will get them to read it all. With regards the primary or secondary question, they are saying it is likely to be primary at this stage although I have to go back on the 9th Oct for confirmation.
It is fairly difficult for me as I actually live in France so I am fairly reliant on learning as much as I can in English from the internet really before I go to appointments so I can ask the right questions, certainly glean the right info from the professionals, and sort of understand the "lingo". If need be once the tests, etc in France have been done I may well return to the UK to try and see someone there just so I make sure I understand exactly what has been said to me. This method of learning and translating to French before appointments seems to be working for me at the moment, but the language is making things more difficult!
BTW if there are any questionsyou think I really need answered please let me know!
I completely understand your reaction. I had a similar experiance. I expected the diagnosis and was kind of hoping for it. I would rather have SS than something worse, or get told I was just over reacting.
But once I got the diagnosis I kind of freaked out a bit. I started reading a whole lot more and I found this site. After a little while I relaxed some. It's really good your family is involved. I imagine that will make things a little easier. Except for your language barriers. I can't fathom having to deal with that in addition it dealing with the SS!
As far as questions go I'd ask your rheumatologist about Pilocarpine (Salagen) or another systemic medication to help you produce more saliva, eye lubricant, and other moisture.
I would make sure you see a dentist and talk about dental trays for fluoride application over night or other things you can do to help keep your teeth health. It's amazing how many cavities you can get in 1 yr. Your mouth health is very important not only for your teeth but also for heart health and several other areas that are effected by your oral health.
I would also see an eye specialist and discuss eye drops or other methods to get moisture in your eyes. I've have intermittent eye pain with itchy water red eyes for several years now. My eye Dr. said she couldn't tell me what was going on until she say me while it was happening, which is a nightmare to try to schedule ahead of time. I just had an emergency visit monday because in addition to everything else the vision in my left eye was horrible. It scared the hell out of me. My eye was so dry I had a big dry patch with a large scratch on my cornea. The Dr. couldn't fix my sight with glasses. Plus she couldn't even see past the damage into my eye to do the whole exam. I'm on the mend and my sight is starting to improve. But it truly scared me.
I've also just learned of glasses called onion glasses/goggles. They look like clear sun glasses but with foam padding that rests around your eyes. I think they were made to prevent tearing while cutting onions. But apparently they help protect your eyes from wind and hold in some moisture.
Thanks for all that info! I am definitely interested in the goggles, I have looked similar products, specifically for dry eyes but the cost of them is way beyond me!
I have bought biotene toothpaste after reading about it and am plucking up courage for a trip to the dentist. It scares me rigid unfortunately.
Here is a website that helped me with the dry eye, swelling and itching....I use the warm compresses and massage plus be sure to drink lots of water and avoid caffeine, since caffeine dehydrates the body.
Thanks for all that info! I am definitely interested in the goggles, I have looked similar products, specifically for dry eyes but the cost of them is way beyond me! I have bought biotene toothpaste after reading about it and am plucking up courage for a trip to the dentist. It scares me rigid unfortunately. :-)
The onion goggles all seem to be about $20, which is way cheaper than the glasses made especially for SS.
I have the same issues with dentists. I've found a pretty good one. His work isn't quite as good as I would like. My fillings are a little rougher than I'm used to. But there's one thing he's really good at, and that's keeping the pain down to a minimum!!!! My first visit I intended to get sedation because I was expecting to get my first root canal and I've only heard nightmares about those. I didn't know you can't eat before getting the sedation so that was off the table (and it was really expensive). He convinced me to give him a chance and it I had pain he'd stop and do it another day. He also told me that some people have a 3rd nerve that most dentist done know to deaden.
Not only did he not hurt me during the procedure, but I didn't even need any pain meds when the shots wore off.
I found him by going through the long list of all the preferred dentists on my insurance. I searched for websites for each dentist. I was looking for sedation dentistry and any thing else that showed they cared about and try to reduce the pain.
I hope this helps. I stayed away from dentists for many years because I hated the pain. I now have fillings in just about every tooth and 3 crowns. If I had found this dentist earlier, I may not have so many issues now.
