(This is a long page, so please scroll down for monthly updated information...Thanks)
Where do I start? What direction should I go? Can’t I just get a copy of your
Not really, because we are all very unique and our brain injuries differ greatly as well as our backrounds and our personalities. You are Unique! I will help you get started.
Getting Started . . . let me recommend a few things that have worked for me:
2) Type out your medications/dosage/times of day you take them along with your medical history and all of your doctors’ contact info and your emergency contact information, print a copy out and keep it close by. Email a copy to your emergency contact and a copy to yourself and save a copy in your email account under a new folder called Medical Folder so you can access this from any location. Update this when anything changes.
4) Organize, Organize, Organize. Get a Daily Planner or use an app on your
phone like Wunderlist . Make it something that is easy for you to use. You should start tracking
All of your activities and scheduling all of your upcoming and reoccurring events. Try to write out your schedule or plan for a day this the night before.Click Here for a short video. This has made life easier for me when I do this.
Coming Soon: Aneurysm Mentor Program
Brain Injury :“Tell it to me straight”
There are 2 Things I have heard which has made the most sense to me:
1) In recovery with a brain injury, if treated like a race, “You should treat your recovery like a marathon not a sprint” in other words you will see some improvement over time (months and years not days and weeks like most other injuries). So that is why I recommend you start a journal so you can revisit where you where, say 6 months or 2 years ago.
2) Since the time of cavemen your brain has been protected by a hard protective shell called a cranium, once air hits your brain, you will never be the same, Never! Now if you had a brain bleed, the blood changes the chemistry of the brain and you will probably be on medications forever. Along with added tools and the surgeons hand manipulation of the brain during surgery, the scientific community will never know how things will turn out as they don’t have a true picture of each individual prior to these injuries.
This is not meant to paint a dark picture of our future. It is something
that I had learned through research and conversations with veteran members of a neuro-surgical teams and rehabilitation specialists. I am here with the intention to share everything that I have learned, both good and bad. Knowledge is empowering when you are putting together and finding the“New You.”
1/10/14 Update: "A Letter From Your Brain"
(Click Below To Open or read below: document may not open on apple devices)
|A Letter From Your Brain
(By: author unkown)
I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.
As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.
I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.
How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?
Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.
What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.
I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.
I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.
I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.
Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.
Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.
your wounded brain
Please read the Disclaimer before contacting me.
Special thanks to E.G.C. and L.C. for helping with the website.
Revision 1:Sept. 12, 2013
Revision 2: November 23,2013
Revision 3:December 19, 2013
Revision 4:January 10, 2014
More Coming Soon:
Topic of Daily Scheduling ( My Goal is to have it up on this page by March12th,2014 )
Contact me after reading the Disclaimer. Thanks!
“It’s not the cards you’re dealt it’s how you play the game.” via Chris Pardo