He reads on this website...but all the information gets all tangled up in his brain.  He has watched the videos which are heartbreaking for us...just so he can see for himself what he looks like.  He won't let me record him but he does the same things. 

So I read everything I can get my hands on...I am a big time knowledge seeker which sometimes drives him nuts lol...but I do it on everything that I have questions about.  From this to my daughters butt rashes haha... 

So what I do for him is research it all..relay it back to him and if he is curious he reads it as well.  Or I will read some things and he will read some things and we compare notes. He is just now opening about his cycles more and more to people who care.  Before it was just me and his parents that really understood and were there.  Now his brother and my parents know more about what he is going through...he used to feel ashamed till he started reading and acknowledging that he isn't alone.  People do care and people do understand although they still don't see his pain first hand they can still feel for him and that means a lot.

Myself and his father are the only ones that have seen him get a hit.  So unless you see a hit you will never understand what it means to have pain.  Trying to explain what he is going through to anyone that doesn't fully understand is pointless.  He does try and he does welcome the comfort from people more so now.

I just want to point everyone here who is curious because it's so hard to explain..maybe I'll print out a lot of the information and just carry it with me everywhere lol

Oh and he does have one those mask..he specifically asked for one when he bought his o2 tank.  I think he just might get addicted to the o2...is that possible? lol  His dad told him he was going to be an o2 junkie and his new nickname is  senior citizen haha

1. Click on the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

2. Print out many copies.

3. Give one to each of your family members and friends.

4. Always have one with you to give to somebody new to this condition.

5. Lather, rinse, and repeat as necessary.

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Yeah, I'm a 23 chronic sufferer (currently in a very low KIP cycle/remission?) and it took me years before I signed on. Don't know why, and finding it did help me to know I was not alone. I think it had something to do with admitting I was so badly off. Maybe. Or just stupid ego and pride. At any rate, I'm glad to be here! Your husband will be so as well, eventually. lance