Comment

Comment by DeAndra on February 8, 2012 at 7:46pm

That is great to hear. My family and I had never even heard of an AVM when I had mine. Most people I have met don't. Maybe more time and more knowledge will really make the difference for her. I pray it all works out. I pray that you reach a great resolution to your situation with the AVM, and with your mother. Good luck and I hope every works out awesome!

Comment by marcylynn on February 8, 2012 at 6:56pm

Thanks-actually tonight I talked to my mom for almost an hour & tried to get it through to her more of what an AVM is and what my risks are....she seemed at least a little more supportive tonight so I am a bit happier hoping that she will start thinking of it more & maybe even reading up on it. I don't think a lot of people know too much about even what an AVM is or what it affects are on someone. Thanks to all again for your support & I will keep you posted :)

Comment by DeAndra on February 8, 2012 at 4:05pm

It breaks my heart to read this stuff. I can't even imagine how hard it must have been. I'm sorry that people can be that way and I hope things get better.

Comment by marcylynn on February 7, 2012 at 9:10am

Beans-thank you for opening up to me. My mom hasn't really supported me my whole life & I wonder if she was jealous of me or what. I remember when I was 11years old & lifting a heavy bale-I got one of the worst headaches I can remember, mostly because I remember it so clear to this day so many years later-I told my dad I had to go in because I had such a terrible headache & he just got mad and me-I remember throwing up & being very sick-I couldn't even open my eyes & for almost two months was sick-I know we didn't have good insurance, but I now feel blessed that I did not die because I do believe it could have possibly been a small bleed-I remember I couldn't even open my eyes & my mom would yell at me to open my eyes when I talk to her-then she made me go sit in the sun saying fresh air would help and that just made it WAY worse. She even video taped me when it was my brothers birthday and I'll never ever forget how terrible I felt. I won't probably ever have kids unless I do some day get rid of my AVM, but if I decide to adopt I will always be here for my child no matter what. I know my mom loves me, she just doesn't know how to show it very well. Beans glad you don't let history repeat itself in how you raise your son :)
Swamie-thank you for your kind words. It is nice to have people here for me to talk to, because my family doesn't understand and if I bring it up someone always seems to try to tell me how worse they have it. I just keep being in denial some days about having the AVM and want it to go away on its own, but I know in reality it won't and I have to start making some decisions soon. Scares me getting older with this thing & waking up every day or going to bed every night wondering what this thing in my brain will do. :/

Moderator Comment by Swami Jim on February 7, 2012 at 3:12am

I know exactly what you're going through! Until you've been there and done that...no one has any idea just how frustrating it can be. This is nothing new. The best bets are to chat with people like us...or you will end up alone, and looking into a horizon hopes of enlightened. No one will give you the time of day unless you may find a pity party, and that never helps. Venting can only go so far. We are the only survivors that understand, so stick around here and keep us together. We need each other!

Comment by beansy on February 6, 2012 at 5:55pm

Guys:
There are no excuses I can make for my mother's behavior. We had 11 people in our house, 6 kids, aunts, grandparents, etc. When I was eight I remember hearing the bruit, or the heartbeat in my ear. I remember headaches. When I told my mother, she did not believe me, said I was a faker like my dad. My dad was deaf. Finally, my grandmother, who was my mother's mother, made an appointment with an eye doctor because I must have had some spots in my eyes, too. She did not drive, but got us a ride to Manhasset, and that doctor saw "something strange. Appointments were set with a neuro guy, but before I got there, I had a major seizure on a Saturday morning. My dad was waiting in the car to take me to a friend's house. He was getting impatient, and asked my little brother where I was. He was 5 at the time, and told them he saw me laying on the bathroom floor, and my head was on the scale. I remember just before the seizure feeling so ill, running to my mother's bathroom, and that's it. I woke up 4 or 5 days later. Much to my dismay, I was in a crib when I became conscious, and that made me so mad, I started hollering. I knew I was too big for a crib.

I got ahead of me. When the ambulance came to my house that Saturday morning, they had to wait for my mother to get dressed!!!!!!! My aunt was there and she told me this. Afterwards, my mother would call me a malingerer, a bull in a china shop, etc. She knew I had lost vision, but told me never to tell anyone, and it would get better. That is all she ever said to me. No, she also told me it was a blood clot, and she said that was what I had to say if anyone asked me. Maybe that's what they told her. I don't know. I do believe she thought it was cancer because the doctors did at first. Cancer was a bad word 50 years ago, sort of like it used to be hard to say HIV or AIDS. She was either worried or she was embarrassed. I do not know. How bad is that if you are not sure if your mother likes you or not. My father, on the other hand, was such a secret advocate. Secret because she would really yell at him if he went to help me and she heard about it. He boldly got me a school bus medical pass when my time for riding the bus was over, and we would then have walk to school or try to get a ride.I went to Catholic School and he was a volunteer at mass on Sundays. He used his pull to get the bus pass. It was white and bright, while all the others were round and yellow, and pinned on your uniform. I rode that bus until 8th or 9th grade. He also went to the public school board when I was a senior in high school. My mother sold our house, and moved the remaining members of the family about 20 miles away. It was March before graduation, and he made it so during the week I stayed in that school district at a friend's house, and went home on weekends. He dropped me off and picked me up. He was proud because we both happened to be in different hospitals; he for hernia surgery; me for brain. He could not visit me, and was not happy about that.

I do not understand parents who behave the way some of ours did. Jake, forgive your folks because if you do, you will begin to feel better. I don't think they were sure what to do, But they did come to you when you needed them. I have a 30 year old son, and I was the opposite of my mother. She taught me how to be a good mother, unlike herself.

beans

Moderator Comment by Louisa on February 6, 2012 at 12:56pm

Marcylynn, after reading what Jake wrote, it was exactly how I was thinking. Thank goodness for Jake! To be honest, Marcylynn, if I didn't have this Network and the wonderful people on this Network, I wouldn't have the positivity I know have! Stay strong and positive, Marcylynn and always remember You Have Us!

Comment by marcylynn on February 6, 2012 at 12:49pm

Thank you Jake for your input I really do appreciate it. I call this my "other family" for sure-it's nice knowing people can relate. I read your story & am glad you are doing well! Best wishes!

Comment by Jake M on February 6, 2012 at 11:10am

I agree with Barbara H., it sounds like a defense mechanism. Parents don't want to hear that their child is sick or in pain, especvially if there is nothing they can do to make it go away. I spent most of my life as a very healthy person... Very active, neer suffered from anything more than the common cold or flu, broke a couple of fingers once, but that was it. Shortly after graduating from college, I started having serious headaches and odd "deja vu" feeling and my parents were convinced that I was just stressed and needed to relax. This went on for several months before my AVM was diagnosed.

Following my surgery, which took place 4 years after my AVM was discovered, my parents did all they could to help me out. Even so, the fact that they doubted me and basically told me that I was "crazy" still sticks in my mind and bothers me.

It isn't easy to go through things like this, especially when you feel as if you are completely on your own and have to keep your thoughts to yourself in an effort to protect your family's feelings. I know that we aren't "family" here on this site, but there are many people here who are able to understand what you are going through, so don't let your mom talk you out of visiting here. Ignoring the problem is not going to make it go away.

You know where to find us!

Comment by marcylynn on February 6, 2012 at 8:41am

Thanks beansy-no, it doesn't seem like anyone cares & it's very frustrating & I feel alone. I keep a lot to myself and don't even bring it up to my family & pretend that everything's ok but inside I'm very confused. My grandma seems to try to learn more about it & I had even added her to this website and told her she can help support me here but she has never logged in after I set her up. Thank you for your kind words-I am sorry your mom didn't support you-it's tough. :( I'm hoping I'll make the right decision soon-I think I'd be more aggressive in going to get more opinions if I had the support from my family.

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