Oh wow, you have polyostotic Fibrous dysplasia too? It's so insanely rare that I thought I was one of the only ones alive that survived childhood. It's a very rare thing to happen even with our insanely rare disease.
I'm 34 years old. I have it really bad in my left side. My right hip and femur was eaten so badly with tumours that I had the marrow replaced with a rod. I have tumours in nearly every bone, but the ones in my arms and right leg are not gigantic yet. I have tumours in my head around the jaw line causing me tooth issues and headaches.
Yeah, I've been married three times, have three (working on 4) kids and I try to do what I can to live. Don't get me wrong, my life is never ending pain. Ever second of every day is a painful suffering mess. While I'm not depressed, I did have some agoraphobia issues in the past. Honestly, the only thing that brought me out of it was meditation. I meditate a lot and it helps me live with the pain.
The butrans patches do help a bit. That "everything is broken" feeling is down to a dull roar for me with Butrans. I also take loratab and muscle relaxers for my back. They make it so that I can function without being so high that I can't think. I was on oxys for a while, but I was high 24/7 and it made it so that I wasn't actually living. Plus, on the meds I'm on, I can actually work. I'm a network engineer for Vonage. :)
I know I don't have but a few more years on me that I'm going to be able to work, so I do what I can. I married a wonderful woman. Yeah, it's WAY harder for people like us to be in relationships, but it's doable. Yeah, my sex drive is nearly nil even with testosterone and cialis. I'm just glad that my wife is so understanding, unlike my first two wives.
You're really the first person I've met who has "polyostotic Fibrous dysplasia" - I've seen more than a few with mono, but with poly it's so rare for us to live past childhood. I lucked out and discovered mine at the age of 20, even though I was breaking bones like hell during puberty.
So tell me a little more about yourself? When did you find out you have the disorder? Is the McCune Albright syndrome that comes with it affecting your endocrine system too? Are you on disability? Are you seeing a specialist or are you being maintained by an ortho or pain management clinic?