hi AussiDebbie

I think you using the descrption of a tooth ache was very good! That is something that many people can relate to.
Also, I agree with you that it is so hopelessly painful this situation that the dicease is so little known, and no good cure.
Yes, when we compare to cancers,MS and all thecronic ill nesses, we do not get the same understanding.
And, for example, a broken leg, gallbladder surgery and all of the condition that can be easily fixed, we can not compare.
I think I know exactly how you are feeling.
I have often gotten the comment: " but you have had so many tests" or --" you have had all the tests, you have seen all the doctors"
Or: " you look so good! " Well, that is good to get a compliment. ( but they do not know how I am in pain later on in the day!!!!!) I usually try to care for my self well, and care about my appearance.

Any way, AussiDebbie, we have good days and bad days! Sometimes we feel hurted.
I think I know a little how you feel. I hope you and your mother have a better visit the next time.