Thank you so much for getting back to me. I will take all the info you shared with me and bring it to my next app’t with a new dentist I’m seeing in June who can hopefully help with creating a bite plate as you’ve described it. I’ll also be contacting a Dr. Andres Pinto from Case Western who was recommended to me by a friend in NJ who is a dentist and has heard of him as someone who may also be able and willing to try to help with this. Will let you know how I make out.
Do want to share with you all that I did meet with an hypnotist in Rochester NY who was very empathetic and helpful.. he put me a most restful state of mind and made a CD of the session with me so I could use it as needed- I’ve done just that and it does bring relief even if not lasting. So important to find people who “get this condition.” I find one of the hardest parts is to socialize (over food) with people who even though they say understand, obviously don’t. This is something the fellow from Rochester said I need to work on-went out yesterday to share in a graduation party (over food) found I could eat nothing without incurring pain and had a mild meltdown… got back in control and stayed at the party but it was all so difficult being around people who don’t understand what you’re experiencing even though they are well intendioned.
Have any of you ever gotten together to actually meet each other somewhere? I would love to know if that is a possibility?
Also, I too am having difficulty contacting you all in the most expedient way. That being said would you mind passing this message along to sheetrock0131- as you, she’s been so kind in her many responses and sharing of thoughts.
Again, my thoughts and blessings to all of you; so impressed by those of you who have been coping with this for years- just 2 yrs. in myself and it feels like an eternity- the isolation that comes with this is devastating.