Hi Elizabeth and a warm
to the group. Your story has the familiar pattern so many of us have faced in our struggle with this condition. I totally get your frustration at people only seeing what they want to see, but they do say ignorance is bliss, and I think it gives people a safe card to not get involved.
My family chose to stay on the outside rather than understand what was happening, and it took them having health issues of their own to look at my health again, and see finally what I was going through. Then they were asking for my advice.
I've had quite a lot of revisions myself, and yet, funny as it sounds they were worth it, because I'm now at a point where I can get on with my life again because of those revisions. I must admit at the time of each of them, I didn't think like that, I found it all so wearing, but I kept focusing on the days when I could enjoy my family and function.
Never give up hope Elizabeth, because you will again get your life back to functioning the way you want it to, you just have to tweak it here and there to do it. In our recommendations section there are links to help with the cost of medication resources, and these are recommended by the IH Research Foundation on their website, and might be of some help to you.
Please remember we are always here for you, and even if it is just to have a rant, you can do that too.