Toby and catwoman,
Thanks for replying again. Bottom line is commuication is the key and I can see that and I understand it's important. I will take your advice and talk to them about my disease, my meds, and what they/I can do to be more comfortable and explain my needs because of AS. Thinking about it more, I think if people knew about this disease, it wouldn't be so frustrating and sometimes scary to deal with others when needing care like at a dentist. A lot of how I feel besides being in pain and just not wanting to go and lay there, comes from the fact that so many people such as dentists and even many GPs don't know much about or anything about AS at all. I hate that no one knows about AS! You mention RA, MS, or cancer and everyone has heard of it, but you say AS and they say what is that? So you start explaining and they just say oh you have arthritis, well so do I. Ugh!! So you have to start from scratch and explain everything to them and why you need them to listen and may very well need individualized attention and how AS is different. I have had so many bad experiences with Drs, as many of us have had, while having symptoms and running around to different Drs trying to find out what was wrong with me, and then explaining my disease to some Drs after being diagnosed with AS and being told how shocked they were that I have AS because they thought it was a "man's disease", and all those type of ignorant comments. Even my kids pediatrician, who I love and is really a very good Dr, was shocked when I told him I had AS. He said really? I understood women don't get AS, which shocked me coming from him and so I had to explain to him that more women have it than is believed and that it's an old notion that AS is a "man's disease" because many, many women have it. And their pediatrician is 38 years old, so he's not an older Dr.
I hope and pray more education is able to get out there due to the SAA matching donations! My husband and I donated all we could spare to help get the word out to Drs. and others about AS and related diseases. Not only does the public desperately need awareness and education about AS and related diseases, but so do Drs of all kinds!! Education and understanding from others would help a little more with living with this terrible disease, not to mention it would help the people out there going through what we have all been through with strange symptoms and trying to find out what's causing them or wrong with us.
Thanks again everyone for your help! I feel braver now and better prepared. :-)