People can be so stupid, crude and heartless. They really have no idea what this is like. I would like to see the walk in our shoes, for a week, I bet they'd jump off a bridge.
Don't for a SINGLE minute think that it's true. And the next time your husband says something like that, ask him if he would act the same way if you had cancer. Or if he was in the same position, how he would feel having u say that to him.

I think sometimes it would be easier to deal with it on our own. Maybe then I could Medicaid or something and at least have medical coverage and possibly a CNA to caregiver to help around the house. ur condition needs to have more media/public awareness.

It's ridiculous that so many people have this, and no one around us including most doctor seems to have a real clue abut how intense the pain is or how it can truly destroy our lives.

I am so sorry the people around you are completely jack asses. I wish there was something I could do other than say I truly know how you feel....

I hope your scs heal well and works a little miracle for you! I really wish I could help you in some way. But try and stay strong. you do still have your little one. She loves you unconditionally, so there is love in your life