It has taken a few hours for me to recompose myself after reading your message. Your statement reinforces my reasons for starting bombobeach.com and spending so much time on my education program for ARD.
We need families to realise that this is a REAL health problem and until we can educate the general public, sadly some ARD victims won't have the support and understanding from their families that they deserve.
Dawn, you mention that your mother suffers from fybromyalgia, a disease also difficult to diagnose and a chronic condition that can wear you down, lead to depression and the feeling of helplessness (just like ARD!!). If your mother is suffering such tormenting pain, then I am amazed that she doesn't have compassion and understanding for your condition. One thing I am concerned about is you using your mother’s medication. While I know it gives you relief, it's important that you DON'T use other peoples medicine it is a VERY dangerous thing to do and can get both you and your mother into a lot of trouble.
I know that you are struggling and that you are keen to have surgery to find relief.... I understand because I was in that situation myself not that long ago.
Dawn, just as Sally (Kanga) has suggested, getting your family to look at this web site would help, but I also know from past experience with these suggestions they won't because they know they will find that you have been telling the truth. It could be guilt, starting off not believing you, but then needing to continue to say it isn't real to justify their reactions and lack of support. Families are supposed to care and support in these situations and they may be unwilling to admit this to you, they may be embarrassed.
As for your daughter, it's not easy but I can tell you this - trying to pretend everything is normal when it isn't won't work. Kids are more in tune than we give them credit for and when there is something wrong, they sense it. They may not be able to put it into words, but they will know.
I am very upfront with my four daughters; the youngest has just turned ten. Dawn, you have an AMAZING daughter! To be so young but capable of cooking scrambled eggs and making the bed for you is great!
Please include her in your discussions and plans for Germany Dawn. Explain that it isn't certain and why. Tell her it depends on if you can raise the money it is important that she know the truth. Trying to hide your illness and pain won't help your daughter, it will send her a message that being ill and in pain is something to be ashamed of, something that should remain hidden. That's not how it should be at all!
Dawn, please send me a private email joanne@bombobeach.com I have some things I would like to do to help you sort all of this out. BUT the first thing is that you write to me, because I need to know that you really want me to help you.
There is hope Dawn, and I will help you find the solutions to your problems, if you are willing to help me do that.
Loads of love, warm gentle hugs & kisses to you and your daughter,
Jo
-- Joanne Eslick Founder Australian Adhesions Support Group http://www.bombobeach.com NSW Australian Co-ordinator of International Adhesions Society http://www.adhesions.org
-- I am not a medical person, and all my messages are based on personal experience. I am a fellow adhesions sufferer reaching out to help others.