details about ur experiences from sjogren

[Joe S.]

Next time, get a nice umbrella that attaches to the wheelchair that you rent. Have several bottles of water. Take lots of shade breaks. That is what I used to do. Oh ya, it takes several frozen fruit bars also.

[soycoffee]

Elirene,
   I have difficulty swallowing. Starting at the back of the tongue, in the next two inches, some foods (not liquids) will catch and stick and be hard to get down. Nothing further down is a problem. Dryness from Sjögren's is part of the problem'; a medicine called Salagen (generic Pilocarpine) in the United States helps me make enough saliva so swallowing goes better.

I always drink when I eat: that helps. When I take pills, there's a move of lifting your face, tossing in the pill, and swallowing -- actually lifting your face, placing a pill on the back of the tongue, taking a swallow of water, then tossing your head back, that helps swallowing.

With food, because I do have problems swallowing food, in those first couple of inches, I prepared food together with hummus -- usually with hummus -- and mix some other food with some hummus so it will slide down.

It's hard to understand exactly what you write. If the swallowing problem is that food, water, drinks, hurt all the way down, then the problem can be something called reflux, when your stomach acids back up into the gullet (the tube that goes from the back of your tongue to the stomach). Technically, the gullet is the esophagus. In that case, you need to see a medical doctor who specializes in gastro-intestinal problems, who will send you back to your GP with recommendations.

All of these problems can be managed. They are scary and different when you don't know what they are. Also, they don't come from Sjögren's. Possibly the first kind of swallowing problem I described is related to dryness from Sjögren's. The second kind, the acid reflux -- burning stomach acid coming back up your gullet -- is not caused by Sjögren's, although a lot of us have it.

Now, breathe. Each time your throat is painful, counter it by breathing slowly, relaxing your shoulders, stopping for a slow count of ten when you relax. Then go back to eating again. Eat slowly. Eating is natural -- even when it difficult. Imagine the good nutrients you are getting, going from mouth to stomach to provide your body with the good food it needs. Then there is a bump in the road; eating stops while you deal with the problems your throat is causing. Then eating continues. You are concentrating on the good feeling in your stomach, and the good taste of the food, not on the new and strange feelings in between.

For the next two weeks, only the next two weeks, don't see the doctor. When you think of calling the doctor, breathe through it -- like labor pains. Call a friend and arrange to meet her/him. Talk about how you FEEL about what's going on in Greece, how upsetting and even frustrating it is, how angry you feel that it's happening. How sad it is. What a loss it is to see your homeland in such a difficult state. Cry with me, cry with your friend.

Your homeland is not the same any more. It will never be the same any more. Things you could count on for the future won't be there. We don't know what will happen, except that the country where you grew up is not the country you live in now, and will live in throughout the future.

Your body is not the same any more. It will never be the same any more. You thought you could count on it for lots of healthy years. We don't know what will happen with a diagnosis of Sjögren's, except that the same body won't be there. Your body will react in some different ways, sometime due to Sjögrens, sometimes due to anxiety, perhaps due to physical changes elsewhere.

You and I have both gone through our bodies changing considerably -- with the first menstruation (first period). As we got used to it, we learned to manage, learned that there are nice things about becoming a woman, learned to accept not being a child anymore.

You can DO this!

Much success,
Soycoffee