My mouth is so dry it feels as though my tongue is a sand dollar, my teeth are gritty no matter how much I brush them. It is just nasty. The one food that even sounds remotely good is Jell-O. I have days that are better than others but for the most part it is like this. I have tons of different sprays, ointments, coconut oil, and drink tons of water. Nothing really works if only for a minute. It is only a Band-Aid. I guess that is why I have read Sjogren's is not curable it is only treatable. But treatable has never been so slow. I have not been known to be the most patient person in the world, but this is ridiculous! Last April 2022 is when it started to really flare up and it has not stopped. Even water does not "quench the thirst". This is the strangest syndrome. So many different issues. Dry mouth is just one and it is disgusting. It has caused me to lose weight, drink Ensure just to make sure I'm getting proper nutrients and do a lot of research. I am finding out the doctors out there are not really savvy on Sjogren's syndrome; therefore, I have to be. I must be my own advocate, no one else is going to be. Also, this syndrome is different with everyone. I have Primary Sjogren's. Some people have Primary Rheumatoid Arthritis and Sjogren's Secondary. I think I am "lucky" to only have Primary Sjogren's so I am just trying to figure out what I need to do to make my life better. This life the last year has not been one I would like to go through again.
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