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My life with seizures

Thursday, September 26, 2013

I barely knew what a seizure was when I had my first one. I was 19, living on my own, had a job, a car, and what I thought was a great way of starting my life living away from home for the first time. That all came to a halt when I discovered I had seizures. I was in my apt. waiting for my brother to pick me up for work. I waited and waited. He finally came, saying he had been there, and called me on the phone. I thought he was just kidding me. Little did I know I had had a seizure.
A couple of weeks later I was riding with my Dad when I had another. Then of course, my Dad knew what was wrong, as my Mom used to have them when Mom & Dad were first married. That was the beginning of a lot of changes in my life. My parents made an appointment with a neurologist, and I discovered I had epilepsy. The only reason he could come up with why I got them so late in life was because of a blow on my head when an ex-boyfriend beat me a year earlier. I was put on meds and my whole life changed.
I had to move back with Mom & Dad, could not drive due to the seizures. So I had to depend on others (mostly, my Mom & Dad) for rides to work, or rides anywhere. I was so angry, and confused and kept asking "Why me?" I even wrote God a letter telling Him how angry I was at Him, asking Him what did I do to deserve this?
The worst part of the seizures is having grand mal seizures, and not remembering anything about having one, waking up confused, and feeling like someone has hit me across the forehead with a baseball bat. I usually know right away that I have had one from just the way I feel.
Over the years I have had hundreds. I have almost drowned in a tub twice, (so I do not take baths anymore, just showers) been in 2 car accidents while I was driving. and at one time I had as many as 20 in a row. I have not driven for over 9 years. My last car accident I was going 65 down a highway, crossed over the median, and ended up in the field on the other side of the road. Fortunately, I did not kill my self or take someone with ). I did however hurt my neck, and arm. I ended up having some vertebreas replaced, and had roto cuff surgery.
Some people were very understanding about my seizures, but others were not ( even a few members of my family) I was on many different meds, and had side effects from many of them. I got tremors from several of them. I shook so bad, I could hardly write, or button my blouse. I had a hard time eating, getting the food up to my mouth. At times I hated them so bad, I did not want to go out, or even do anything.
Over the years I have had many, many hundreds of them. I thought maybe I would outgrow them, as my Mom did. But no such luck. When I moved here over a year ago, I had 2 and was seizure free until this last Monday. I was walking to the library to take a book back. I remember crossing the street, and the next thing I knew I was in an ambulance while someone was asking me a lot of questions which I could not answer, as when I come to from having a seizure, I am so, so confused. I did not realize I had one until I was in the hospital. I had hurt my head, so they had my neck in a neck brace. They took an MRI and didn't find anything wrong, except a broken nose. I guess I fell forward unto my face. They kept me in the hospital for almost 5 hours to observe and make sure there was nothing else wrong. Before I left the hospital, I looked like a raccoon. My nose was swollen almost twice its normal size.
I have not been on SP since Sunday because of this, and have not gone to school, because I didn't want the kids seeing me how I looked. My friend who is also a foster grandma told my teachers, and the kids filled out this big sheet of paper with "We miss you, Grandma Barb" and they had all signed it on the inside of this huge card. My friend brought it over after school. I just cried when I rec'd it. I cannot describe how it made me feel.
Yes, I will keep praying that this one will be my last one, but if it isn't I will go on, as I have all these years. I keep trying to understand why I keep getting them, but realize there is not too much I can do about it. I could tell myself that I had been exercising too much, or too much bike riding, or if I had only done this or that, but know that is not why. It just happens, and will probably happen again. I just Thank God, that I have so many in my family who understand and so many many friends who understand and still care for me even if I do have them.
This is why I have been gone for all these days. I have missed being here, and am not sure when I will catch up. I will do a little at a time. It seems this was the worst one I have had, and hopefully it will be the last one I ever have. It seems like having seizures for almost all of my life has helped make me a stronger person, and a person I will never regret being.
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Member Comments About This Blog Post
    I'm sorry that you've had to live with seizures nearly all of your life. But I have to tell you, when I see the messages you write and when I interact with you, I see a strong woman who has lived a good life. Who has had ups and downs and is not only still standing, but grateful to be alive. A woman who encourages others and shares her positive energy with everyone. The things we go through make us the people we are. YOU are a beautiful person! emoticon
    319 days ago
    I am so sorry for what you go through. I have lots of physical and also psychiatric issues that have cropped up over the years. I have some good friends and family who have helped me in a big way. I also have in home care and many services that make life more manageable. I had a few seizures when I was about eighteen but they didn't continue. Having a disability is hard and there are some who won't understand, but the ones that do will be like a salve to your soul. I can't imagine living with not knowing what will come like that. You have so much courage!!!
    370 days ago
  • DTHOR6
    Seizures just stink. I had them for a solid year before the doctors determined it was stress related. Thankfully I can now feel them coming on and can usually stop them so not at all like yours they do run your life! I am so glad that you have been seizure free for 5 months. I will keep you in my thoughts and prayers that you stay seizure free. Big big hugs!
    465 days ago
    Oh, my god, Barbie…. I knew you had seizures, since you told me you also see a Neurologist, like I do after my stroke…but I had no idea how serious… thank you so much for guiding me to your blog…it really helps to understand your situation.
    Take good care of yourself…we can definitely catch up later about meeting in person 

    622 days ago
    780 days ago
  • CINDY5412
    Such a sad story Barb. Do you still get extremely severe seizures to this day? Due to my Mom's cancer medications she got seizures. Was very hard to watch her go through that. Hopefully they will slow down some for you. emoticon
    780 days ago
    My son had seizures starting in kindergarten. One friend of mine was under a great deal of stress and began having seizures. Maybe de-stressing techniques like mediation might help, or perhaps therapy or something to help you recover from the trauma of that abusive relationship? Another friend has a brother with epilepsy who took many years to find meds that worked well enough that he could drive and work.

    emoticon Good luck and God bless you.
    1582 days ago
    Oh my dear friend, I'm feeling so much for you with having all those seizures. I hope like you do, that this will be your last! You are such a loving, strong person with determination. This would get you through anything. Thank goodness you have your immediate family for support which one needs so much through the tough times. Loving you sweetie and I'm wishing you the very best! emoticon emoticon emoticon emoticon

    1582 days ago
    Bless your heart. How difficult. My oldest daughter had her first grand mal seizure when she was five. She was on meds for years. She has had a few more over the years, but seems to have out grown them. I have taken mirroring for p a in, a nd it has the same effect on me as the tremors. I haven't been to church for several ee real years, because it gets so much worse. I feel for you having so many health issues . I have been on disability for three years, I could barely get around. If you need someone t o chat with I am here. Hugs, Cathy
    1584 days ago
  • A_SIZE6
    Barbie I want you to read Katie's testimony on my blog post. I think it will really minister to you and encourage you. I used to have seizures to the cause of mine wasn't known my mom stood faithfully praying for my healing I don't have them anymore. do you think since you know the cause that you can pray for against that spirit of trauma and ask God to release you from that trauma and his healing over your body. I have a friend of mine who has seizures to his was caused by a serious accident he was in at age 4 years old the impact of that trauma caused his seizures. I am going to pray over him that the spirit of trauma be released from him and that God will bring healing over his body.
    1599 days ago
    That is so sad that the cause of your seizures is due to a male who was insecure. I would assume that is mainly the reason they do those types of things.

    I'm glad that you didn't have anything real bad happen in these seizures. I'm glad that you made it across the street before having a seizure, instead of in the road.
    Sad, sad, sad.

    Big emoticon
    1610 days ago
  • LORRAINE10141
    Thank you for your welcome. It is so kind of you to do that despite being in discomfort from your fall. I'm sure you make a very cute racoon. My brother-in-law's life was very, very difficult until his doctor finally was able to recommend meds that worked well in controlling his seizures. The messages from the children are precious keepsakes. I remember how much they comforted me after I had surgery. I hope you will be able to return to your interaction with them soon. I remember how excited my classes would be when I read thank you letters to them from people they had touched with their writings. Sounds like your local school has a great program to involve senior citizens.
    1610 days ago
    Barb, what a lovely surprise to receive that message from the children. It shows how special you are and how much they love you. So sorry that you have had to learn to live with this. Thanks so much for feeling able to share with us. Take care of yourself, you are more than worth it.

    emoticon emoticon
    1612 days ago
    I'm so sorry that you have had so many seizures and all because of your ex-boyfriend. I'm also sorry to hear about your latest seizure. I do understand about the not driving thing and about how angry you were at the whole situation. I'm legally blind in one eye and was told when I went to get my driver's license that my eye doc said that it wouldn't be possible.

    I understand a lot of your emotions and feelings even though are situations in life are a bit different. I know what you mean about being a stronger person because of everything you've gone through. I've had many medical problems in my life since the age of 5 and I do believe I am not only stronger but a better person all the way around because of what I've been through. Just want you to know that you'll always have me as a friend regardless.

    Take care! emoticon emoticon emoticon
    1612 days ago
  • BRADMILL2922
    Wow Barb, I am sorry that you have had to live with that. I hope they do stop for you at some point. I know it has caused you a lot of pain in life but I am sure that you are a stronger person for it. I definitely wish you all the best for the future.
    1612 days ago
    I have missed you and I salute your courage in being so open about what is going on with you. I have a chronic illness and I know that some people have trouble dealing with these kinds of things. Epilepsy is so unpredictable - it increases the stress. Just want you to know I'm on your side - no matter what the future holds for you. You are so wise to take it slow and do what you are able. We understand and wish you the best. emoticon
    1612 days ago
  • LUANN7
    Oh Barb I am so sorry. I could feel how you feel reading your story and it hurts. you don't deserve the seizures but God has a plan for it but we will not know what it is till we get with heart goes out to you and I am praying for you that you won't have another one. emoticon emoticon emoticon emoticon
    1612 days ago
    Hopefully one day they will stop for you!! I've had a total of 3. My last being in still on meds for it to this day.
    1612 days ago
    I am so sorry to hear about last Monday. I hope you are doing better. You are in my thoughts and prayers.
    1612 days ago
    I am so sorry a bastard ex-boyfriend started your life this way. emoticon You seem to have lived a very involved life regardless PLUS still making a difference in young people's lives. I have seizures sometimes and I wonder if you need your meds readjusted? You have a courageous spirit and I hope you will always have peace no matter what happens. emoticon God bless you, my friend.
    1612 days ago
    I'm so sorry that you have to live this way because of an ex abusive bf, I deal with pain on a daily basis and it's a tough life and it sounds like you have it tough also.
    But your so lucky that you have kept some good friends and some family members that actually understand. I lost all my friends and my family (parents, siblings ) when I got sick with chronic lyme and fibromyalgia.
    Your a strong person and I pray that this last one will be your last one and that you have some peace in your life!
    God Bless! emoticon
    1612 days ago
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