More information about my history with my AVM;
First rupture at age 8 two months before I turned nine. During that time my parents were told, go home go home there is nothing that we can do for her. I was admitted at Kaiser Permanente in la sierra. But little did doctors know that it was just the beginning of my life. Soon after the brain hemorrhage I was in a state of coma for just a few days I think. I remember not being able to remember my family and not being able to walk right. I all so remember being on pain meds because my entire body would hurt.
Before I was released from Kaiser my parents and I were told that I was not expected to live a long life, for a child at age 9 and not knowing or understanding what was really going on it was hard to communicate with the rest of the world including my family.
My childhood was not normal I was in home schooling for a couple of years, didn’t have any friends didn’t know how to even communicate with my own family. I felt like the outsider for years and years.
I remember getting sick a lot, it felt at times like the hospital was my only home so it started to feel normal being there.
In August 19th 2007 I had a second brain hemorrhage, I was at work praying “God please don’t let what I’m feeling be true “, trying to make myself believe that it was only a severe migraine. I sucked up the pain and waited 3 hrs until I knew my body was giving up on me. By 3 pm I paged my supervisor urgently I was still in denial of what was going on and refused to be taken to the hospital by an ambulance. I drove myself to Riverside Community Hospital ER, scary but I have no memory on how I got there all I remember is getting off the car and as I’m trying really hard to focused on the ground because I couldn’t feel my legs all I was thinking about is get inn and sit down. I remember showing my Medic Alert bracelet to one of the nurses and she and any other PA or nurse didn’t know what I had. By then I was not even able to get upset by it because I was too weak to even speak. All I asked them to do is to call my doctor and he would tell them what to do. After that I was rushed to get a CT-scan and an EMT was trying to give me pain medicine through my veins without asking any questions about my history… At one point he was trying to tell me that I needed to sleep all I could think about was my kids and how I was not going to fall asleep because I was afraid to drop in to a state of coma again. I never fell asleep.
It was hard for me to think of the “what if I don’t make it”, knowing that I have been a single mother of two boys. All they have is me… It was hard really hard.
I was transferred to UCLA a week later because Riverside Community Hospital didn’t have a brain specialist on board. I spent a month in the ICU unit, and it still brings tears to my eyes.
My experience in the ICU unit was one of the worst experiences ever; I was getting a high dosage of pain meds through my IV every two hours, I was not able to sleep my doctor had to order sleeping meds just so I could rest at night… My blood pressure would drop to low 70-60/30. By then nurses had to rush to my bed and move me around so I could snap out of it… the howl time that I was in the ICU unit was heart breaking for me. I had one picture of my boys together and by the second week I had to put it away because every time I would look at it, it would bring tears to my eyes and my chest would feel tight. I remember that one of my nurses had asked me why I had put it away, I started to cry and was not even able to speak but I tried really hard to explain to her that I just miss them so much and it hurts to know that I was sick and I’m not ready to leave them.
Hi Precious,
What a story, but you are doing the right thing, we are not in control. God is in control. I have older children and when I had my bleed/stroke, all I could think
about was them. I said Lord, please don’t let me die, not now, my children have seen enough, my sister and my father passed on in 2000. I asked the Lord to give me a sign if I wasn’t going to die. I said just don’t let me pass out and I didn’t. I fought hard to get back home. I’m still supposed to have surgery, but at least I’m home and in my right mind now. My children are 17 and 22, I know how I felt so I know how a Mom feels. It is heart wrenching to imagine not being around for your children.
Peace,
Ameenah
wow… you have your faith and then you have us!! I can understand how you felt when you were younger and haveing things happen to you and not understanding waht is going on … i startd to have my seizures when i was eight and they continued till i was about ten. i didnt have another seizure until i was 22.
i am so proud of you that you never gave up and that you still havent given up!! YOur kids need you and so do we!! = )