About Me
- Sheila
- Virginia Beach, Virginia, United States
- I am a wife,mother,and nana learning to live with a disorder called Chiari1 Malformation with syringomelyia & other disorders all related to the chiari.I traveled a long journey too find results and my wish is to help others find help thru my experiences.I have given up a career I worked hard at for over 3 decades, but the 1 thing that I lost, is I am unable to be the mother I had planned and should be to my daughters, and that by far is the greatest loss of all.I was happy to have validation but accepting limitations is difficult for one who was so active and independent and wanted so much more for my children, as we all do as parents. I made friendships that are more valuable to me than any pill. They make me smile, laugh, and cry,but most of all they saved me from the aloneness.My wish. after a cure is that someday I can turn to a neighbor, new friend, or even a medical professional and when I say I have Chiari the answer will not be "Chiari what is that?" Wellcome to my journey into discovering all I can about my disorders and try to bring awareness and maybe share a laugh with someone and let them know that they too will never have to travel this road alone.
Sunday, September 21, 2008
Thursday, September 18, 2008
A Letter to your Brain tx Stephanie
A Letter From Your Brain
--------------------------------------------------------------------------------
Hello,
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.
Love,
your wounded brain
©1996 Stephanie St. Claire
May be reprinted for personal, not for profit use.
Livetulaff@aol.com
Contact me if
you have any questions or comments.
--------------------------------------------------------------------------------
Hello,
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.
Love,
your wounded brain
©1996 Stephanie St. Claire
May be reprinted for personal, not for profit use.
Livetulaff@aol.com
Contact me if
you have any questions or comments.
Tuesday, September 16, 2008
Sunday, September 14, 2008
This so mirrors my journey so I had to share it
This ladies journey was so much like mine I had to share and her husband, mine was by my side and still is on this journey Too, Thank God for Good men in this world they are hard to find.
Saturday, September 13, 2008
Park in the handicapped without others seeing red
 |
| From sheilas family and stuff |
I just currently read this article again after comming face to face with a women that gave me a look to kill, and I was having a bad day with pain anyway, so I shouted out "do you have any idea what chronic pain is?" Look it up if you don't and keep your dirty looks to yourself." I felt bad because I am usualy not an angry person but was I am totaly feed up with having to explain my life and what a day with pain does to me and my whole famly and that was the last straw. If any of you have not read this article by an angel :Lisa Copen, you need to, especialy when this is chronic illness awareness month and also Chiari awareness month which is the disorder that is near and dear to me, since I have this disorder. So next time when you see someone that may look Ok on the outside remember there are many illnesses that are invisible and they deserve the right to park there too, keep your looks friendly because you never know when you or someone you love will become ill and it won't show to others, how would you want them to be treated?
I don't remember the whole saying or who said it, but you don't know a man/women unless you've walked a day in their shoes. That's powerful and true..
http://www.restministries.org/invisibleillness/thingstoprint/ii7_oped_canthosepark.htm
Thursday, September 11, 2008
Tuesday, September 9, 2008
Friday, September 5, 2008
When chronicily ill you have to laugh when
Laugh!
Let's face it. . . chronic illness can have its humorous moments if we look for them.
You know you have a chronic illness when...
You understand all the medical terminology discussed on the T.V. show Grey's Anatomy.
When you hear the term "Club Med" you automatically think of the hospital.
You ask your child to open the "child-proof" bottles of medicine because your hands are too sore.
Your medical records have to be transported on a cart.
To entertain people at parties you recite the side effects of medications as if you are the voice over on a commercial.
Your favorite Oprah program is when Dr. Oz is on.
To get rid of boredom on road trips, your whole family can go through the alphabet and name a drug that starts with each letter of the alphabet.
When you're unable to sleep because of pain, you watch "The Jerry Springer Show" and feel like you actually have a life.
Your spelling has improved dramatically, especially on words like "fibromyalgia" and "osteoporosis."
Or you've been "Around the World in Thirty Minutes" with CNN's Headline News 57 times in one sitting.
You have a panic attack in public and say, "Praise God this is only the fourth one today!"
You're invited to the wedding of the gal who works at the hospital lab.
You're child thinks watching you do injections of medication is "cool."
You have a flashback and don't know what happened and can honestly say, "I don't know where I was or what I was doing but I'll make
something up if you'd like."
Copyright, Lisa Copen, Reprint permission granted if the following is included:
Reprinted with permission of Lisa Copen, Copyright 2007, National Invisible Chronic Illness Awareness Week, http://www.invisibleillness.com
Top 10 things NOT to say to a chronically ill person
See the Rest Ministries/hopekeepers T-shirt with this saying on the back!
10. You can't be in that much pain
9. Stop being lazy and get a job
8. You just want attention
7. Your illness is caused by stress
6. No pain. . . no gain!
5. It's all in your head
4. If you just got out of the house...
3. You're so lucky to get to stay in bed all day.
2. Just pray harder
1. But you look so good!
Copyright, Lisa Copen, Reprint permission granted if the following is included:
Reprinted with permission of Lisa Copen, Copyright 2007, National Invisible Chronic Illness Awareness Week, http://www.invisibleillness.com
Let's face it. . . chronic illness can have its humorous moments if we look for them.
You know you have a chronic illness when...
You understand all the medical terminology discussed on the T.V. show Grey's Anatomy.
When you hear the term "Club Med" you automatically think of the hospital.
You ask your child to open the "child-proof" bottles of medicine because your hands are too sore.
Your medical records have to be transported on a cart.
To entertain people at parties you recite the side effects of medications as if you are the voice over on a commercial.
Your favorite Oprah program is when Dr. Oz is on.
To get rid of boredom on road trips, your whole family can go through the alphabet and name a drug that starts with each letter of the alphabet.
When you're unable to sleep because of pain, you watch "The Jerry Springer Show" and feel like you actually have a life.
Your spelling has improved dramatically, especially on words like "fibromyalgia" and "osteoporosis."
Or you've been "Around the World in Thirty Minutes" with CNN's Headline News 57 times in one sitting.
You have a panic attack in public and say, "Praise God this is only the fourth one today!"
You're invited to the wedding of the gal who works at the hospital lab.
You're child thinks watching you do injections of medication is "cool."
You have a flashback and don't know what happened and can honestly say, "I don't know where I was or what I was doing but I'll make
something up if you'd like."
Copyright, Lisa Copen, Reprint permission granted if the following is included:
Reprinted with permission of Lisa Copen, Copyright 2007, National Invisible Chronic Illness Awareness Week, http://www.invisibleillness.com
Top 10 things NOT to say to a chronically ill person
See the Rest Ministries/hopekeepers T-shirt with this saying on the back!
10. You can't be in that much pain
9. Stop being lazy and get a job
8. You just want attention
7. Your illness is caused by stress
6. No pain. . . no gain!
5. It's all in your head
4. If you just got out of the house...
3. You're so lucky to get to stay in bed all day.
2. Just pray harder
1. But you look so good!
Copyright, Lisa Copen, Reprint permission granted if the following is included:
Reprinted with permission of Lisa Copen, Copyright 2007, National Invisible Chronic Illness Awareness Week, http://www.invisibleillness.com
Thursday, September 4, 2008
Wednesday, September 3, 2008
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