It sure feels great being around people who know what I'm talking about

Love my wife, even more since she stuck with me after my bleed, rather than running for the hills. But she doesn't understand some of the symptoms, strangeness, involved with our affliction.
Thanks for being here.

Hello tdz103m
Yes I know what you mean. I find myself either at a loss for words or after "sharing" people look at me with so much pity or they dont believe that I look fine but am in constant pain but able to work most days
This site is a God send when I found it I felt so alone and so scared but have always been the strong one.
My husband knows I have bad days and some days where I am able to do more like my old self I think we need to morn our old selves as well.

I think that no matter what symptoms or what health issues a person has. It's hard for anyone to understand what they are going through unless they've been there themselves. The only way for people to tell when I'm not doing well. Is when they see me having tremors and going pale. They can't see the inner struggle I'm having before I start getting that bad. They can't see that I'm not comprehending what they are telling me. They don't notice that I'm leaning on one leg because the other one won't hold me any more. We can't see other people's headaches or migraines. We can only see the expression on their faces. And some people are very good at hiding it (smiles).

I can understand why your wife doesn't get it. I'm not condoning it, I'm just saying I understand it. Even though I'm single, my closest friends and my family don't get it either. Unless I happen to be talking to them when my speech is slurred.... Then they get it... LOL



Give her articles to read, knowledge is powerful, so she can connect the dots on her own. We have 5 member's in our family that have Cerebral Cavernous Malformation of the brain and brain stem. Three have had brain surgery. One at Oregon Health Science University her in Portland Oregon. The other's have had them at Stanford Medical Center. As be the wife and mother and grandmother and a Non CCM patient coming to the place that I couldn't change, control, cure their pain has taken me years. They didn't call me Mama Bear for nothing. All those in our family who have this disease have anywhere from 5 to over 50 of these malformation. When one bleeds, emotions change, energy level change, temperament and video input can escalate anxiety, frustration, angry or even rage. Calm quiet place and rest and removing one self until it passes is key. Sleep, good food, steady routine every day, self manage, acceptance that it is here forever. We've been married 43 years, and our 3 children are all married and we have 8 grandchild. 50% of our family will have this same brain disease. We know where to go, who will treat them, what works and what doesn't, we keep advised on the latest technology. We have one of the best neurosurgeon on the west coast. We think with love and forgiveness. Sometimes my husband doesn't need to apologize for what he can't control. Love see's us through it all. WE LIVE LIFE. Camp, fish, boating, walks, anything to do with the ocean that is mellow..So find your peaceful place together. It will test your foundation.