I don’t want this; I never have done and never will. It controls me. I'm not the same girl I was before I found out, before I got ill. This thing it is inside of me, it’s a part of me. Whatever happened to control? I have none; I lost it all when I started bleeding. I wish I could perceive this differently, but how can I? I’m just a kid who is scared. I don’t want to be scared though, I want to be normal, well as close to normal as possible. I died when I was diagnosed, I don’t live anymore I just breathe. Everyday revolves around it. I'm scared to go out with friends in case I bleed; what if it kills me while I’m out? My consultant told me it won’t kill me, but we can never be 100% sure can we? I don’t understand how any of you can do it: live. I’m so envious that I can’t just deal with it, live a normal life. I should be going out with friends, developing relationships. I should be living life to the max, it’s my second chance of life, but I can’t. I don’t know why though, I think it’s a fear of living. People always assume I’m scared of death; I’m not though, I’ve been so close before. Death is the only certainty of life; I wish I could stop knowing that. I don’t even know anything about my AVM; I’m too scared to be told about it. My old consultant showed me my scans; I didn’t know what to say. Maybe it is because I was younger? I want to disappear, this to disappear. I want the scar to go, people only know me because of it, “Oh you’re the sister with the weird illness and scar”. I'm not embarrasses of it, its part of me, it’s like getting rid of your nose. The pain is getting horrific; I don’t want to leave the house no more. What if it gets worse and I can’t control it? They say the pain is psychological now; I’m not crazy, it’s real, I know it is. This is real. Why me? I’m just a kid. Why any of us? None of us deserve this. Have I done something wrong? School treat me like I’m dumb because of it, they want me to do foundation papers instead of higher. I’m ill not dumb. I wish people understood, knew what it is like for me. Everyone’s experience with life is different. I'm tired of this: having to smile even though it hurts too much; pretending that I’m not scared, but really I am; allowing treatment when really I want to run as fast as I can away from my illness from myself. I don’t want to let my family and consultant down though, he has put so much faith in me; a little too much I think. He has tried so hard to help me I feel sorry for him. He knows me better than most, I am forever grateful that he saved me; I was too young to die. He took a ‘leap of faith’ with me, giving me treatment. I always think about what would have happened if he didn’t though.
Sorry for the rant, I just need people who understand.
Hi Nikki. I am sorry that you are suffering from such mental anguish. There is nothing wrong with asking for professional help. I would think your consultant would be more upset if you said nothing. Now do yourself a favor if you are on Facebook look up Positively Positive or We Are Here To Inspire.
Hello Nikki. Like Barbara, I am so sorry for your suffering and I also understand your fears. I am much older than you are and I had terrible fears for some time. Please speak to your consultant; he sounds like a really supportive person and I do believe he would help you in any way possible. It is ok to ask for help, I have and still do because I can't do this alone. Please take care my young friend, my thoughts & prayers are with you.
I have professional help; I have seen 4 psychiatrists, 4 psychologists and psychotherapists. Nothing helps what so ever. I have even had two admissions to mental health units. Nothing is getting better. My consultant has been trying to get me help for years; we talk about it every time I see him, I'm just getting nowhere. Thank you anyways. I guess it will just take time.
Hi Nikki. Please keep searching for the right answer. I believe life can be difficult but it can be very BEAUTIFUL too. Obviously your consultant thinks you’re pretty special. BTW…we think you’re pretty terrific too!
Nikki, admitting your fear makes me know that you are a very strong lady! There is a good friend of mine that has been through exactly what you are going through and she is funny and positive and you'll love being her friend. Her name is Shalon. I sent her a message about you. Here's how you can reach her http://www.avmsurvivors.org/profile/ShalonWhitgob?xg_source=profiles_memberList...Send her a message. In the meantime, if you need anything or anyone to talk to...we are here for you, sweet Girl!
Nikki...There are also three groups of AVM'rs your may get information or friendship from:
http://www.avmsurvivors.org/group/extremityavms
http://www.avmsurvivors.org/group/teensofavmsurvivors
http://www.avmsurvivors.org/group/teenswithavms
Stay Strong....We are all here to help you through this!