When you have this disease so long, it seems those around you just get used to you being sick so they kind of just give up. I have been angry with my husband, well mostly hurt, that he doesnt take the time to help research and find answers WITH me or FOR me. He is one to go in to the doc offices and just shake his head in agreement with everything they say. When the docs have no answer or advice or tx for me, he just is OK to live with that. This is really hard for me because I have the type of husband that gets VERY proactive in things he is interested in. He spends hours and hours researching his hobbies....gets almost drunk with excitement about the things he loves. And when there is something that needs to be fixed, he will go to the ends of the earth to learn how (or run around trying to find a replacement.) Hmmmmmmm....should I be worried? (tiny little laugh). Lately when things have been pretty rough with me completely down with this, I have asked him why he doesn't help research and join in my fight....OUR fight. I feel like he has just abandoned the whole thing. This has impacted him and the rest of the family SO much. We have lost my income. He has had to do so much more as far as shopping, etc. But for the most part his life is the same. He has work. He has hobbies. He has a family. I just want him to know that just because HE has settled into being almost OK with me having this illness, I am surely not going to go down without a fight and I WANT MY LIFE BACK!!!! How do I get it through to him that I need his help in advocating for me and helping me to find answers? I have even discussed the fact that if one of our children were sick with a debilitating disease, he would be scouring the earth for help and looking for a cure. This is not a man that is ignorant or meanhearted or simple (Ok sometimes he can be clueless), so why is he so nonchalant about me getting and finding the help I need and HOW do I get him more involved without being whiny and being a B? How do I get over the hurt that he maybe just doesnt care or has become used to me being sick?