Hey "jills"
I can sure relate to your dilema, as can hundreds of other adhesion sufferers. It's very sad that more doctors aren't making themselves better informed about ARDs, however, the plain truth of the matter is that we still remain pioneers in this disorder. Things have greatly improved, but have a long way to go with educating the masses.
You need to realize that the most valuable aspect of your suffering is wrapped up in the fact that you are your best advocate for services and care. "jills" don't forget for one second that you are the employer and the people from whom you seek help are in actuality, your employees. If you were running a company, you probably would not accept inferior work or shoddy service from sub-contractors or vendors. It's the same way with your body and your health. Don't wait for someone else to save you, you've got to take the bull by the horns and "git 'er done!"
Don't stop with this hopeless advice that you've received. There IS more that can be done. If you have to fight your insurance company to get better service, do what you have to do! Get other opinions, do a search for physicians within a radius around your location who treat ARDs and have a clue about the pain we go through. It's hard when you don't feel good, but you've got to do this.
Dr. Wiseman and the Center for CAPPS is the first ray of advocacy hope that we all have. Tap into their services and resources, even if you have to crawl to get to them.
I don't know that they've had time to do this yet, but I'm sure they soon may have a comprehensive collection of physician lists for specific geographic areas who have exhibited expertise and compassion in dealing with ARDs. Seek out this kind of resource if you havn't already.
I'm sure going to pray for you and will gladly inspire you to be your own advocate!