Carries Chiari Connection

I am unsure of who left the message because there was not a name with it. I am going to the Cleveland Clinic on the 5th for a second opinion and I am hoping that they can explain my situation better than my previous neurosurgeon. <br>Thanks for stopping by! <br>~Carrie

Linda, Thanks for stopping by. I still am in search of a good doc. Would you be interested in adding my link to your blog page? <br>Thanks. <br>~Carrie

I could not get my forums to work but wanted to make sure I posted my daughters feelings. so here it is: She is a writer (as you will see) <br> <br>Hello. My name is Sarah. I am 15. I have a mother with Chiari. <br> <br>I don't know much about the disorder, but I hear more and more each day. She's always thinking about it, and sometimes, its as if she thinks about that more than me. I know it sounds selfish, but that's what it feels like to me. I love my mother with every fiber of my being, but I do not love her Chiari and her having to be thinking about it 24/7. <br> <br>She can't do the things we use to do anymore. All the trips to theme parks and beaches and anything you need to bend and be thrown about. I'd never push her into going to these places, just because I wanted to go, because I know what can happen. I'm not ready to lose my mother yet. I dont think I'll ever be. Still, I'll be ready when the time comes, but I'm still waiting to see her there on my wedding day. In the front row, tears in her eyes, a smile on her face. She is the most beautiful person in the world, and I love her. <br> <br>Still, I am a teenager, and we tend to be selfish. So, everytime I hear more about Chiari, I tend to block it out. Every conversation seems to be about it and nothing can be done without it mentioned. I am always here for my mom, but a kid can take only so much. I hate to see her in so much pain. I would trade with her in a heartbeat if I could, just so she'd be able to feel good for one day. But, I cant. Still, I try to do what she asks. Again, I'm a teenager, and we never do everything we're told the first time, or the second or third. I can get angry and agrivated and pretend that I hate her, but there is never a day that I truly mean that. I love her everyday of my life and will continue to long after she is gone. Until then, I can only hope to give her half of what she needs. <br> <br>Chiari hurts more than just on the surface, with physical pain. It hurts psychologically and mentally. I write this, with tears in my eyes, because I've never been able to tell her this. It is hard to live with a mom that has Chiari, but I wouldn't trade her for anything in the world. I love her, with every flaw or bad habit. She gave me life, and I wish I could give it to her as well. Me and my sister and brother are her life, I know that. And, we've always came first. With Chiari, my mom seems to focus on that, but I know that we're always on the top of her mind. We're always the faces she sees when she closes her eyes, and when she dreams, she dreams of us as well. I only wish that I could give her what she's always given us. <br> <br>I love you, Mom. I wish everyday, on every falling star, every eye lash, and every birthday candle, that you could just have one day of happiness and no pain. I'm sorry if I ever caused her pain, but sometimes, we kids cant help it. We're just kids. But we all love our parents. Those parents with Chiari are no different. They all deserve the same love. They all deserve happiness. <br> <br>**SarahKay** <br>

If you read the entry from my daughter you can see that living with me is not always fun! That is why it is even more important that I try the biofeedback that the doctor at the Cleveland Clinic told me to try. I am determined to change my life from now on. I am going to push myself as much as my body will allow. I wont do anything that will cause a bad reaction but I know that since I have found out about my Chiari I have given up too easy when handed a task or invited to do something. It's time to wake up and enjoy my family as much as possible. I know I am more capable of doing things than I act. I have to start living again. I cannot allow Chiari to be in the driver seat anymore. I love my children and my husband with all my heart and soul and they deserve to have me back again. <br>So, with that being said, I hope that I will find the courage and the will to fulfill this goal. I have always been told that I am a strong person...it's time that I prove that. <br>Love and hugs xxxooo <br>~Carrie

On July 7, 2007 my lil cousin's 4H group held a car wash in Greenville, OH. Half of the donations will go to Conquer Chiari. We raised almost $300.00. I was SOOO amazed at the end of the day, not because of the money. I printed out about 50 Chiari tri-fold brochures and they were handed out to each car that got washed and the parents of the 4H kids. Guess what....everyone read them, they didnt toss them to the passenger side seat..they sat there and read them. <img alt="big grin" src="http://images.freewebs.com/Images/Smilies/Round/biggrin.gif"
> I even had one guy get out of his car and ask questions about Chiari. I educated a bunch of people that day and it felt really good. (it brings tears to my eyes thinking about it) I now keep about 50 brochures with me in the car and some in my purse. I leave them almost everywhere I go. I dont want ANYONE to feel alone like we did when we first heard about Chiari.

<span style="color:white;"></span><span style="font-size:12px"></span>Hi, I just wanted to thank SarahKay for writing, for saying it here publicly what is so hard to say in life sometimes;<u> I loVe you, Mom, just like you arE. </u> <br>I have kids too, one is a 16 year old who Has to drive me around a lot because I can't drive anymore She has to wait for me while I limp behind her, wonder if I'm going to fall in public ... <br>Talk about stirring up feelings~ that will do it ~ I also have an eleven year old that had to help me when I was having seizures throughout the day and he was only one here. Not very pretty scrapbook memories. And yet, we belong to each other. They are parts of me and I am part of them and there's just no undoing it. I, for one, am so thankful for that. For them~ <br>(and for the hope that your post inspires) <br>Thanks again, prism

My Chiari brain, <br>though I'm not insane. <br>The good doctors are hard to find. <br> <br>Some have scratched their heads, <br>prescribed me some meds, <br>And said this is all in my mind! <br> <br>They took blood and x-rayed <br>Made me afraid, <br>And offered their magic potion. <br> <br>But I still felt like blah, <br>They said you're fine, DUH! <br>But the clowns did not have a notion. <br> <br>Then one famous day, <br>When they were wonderng HEY? <br>They sent me for MRIs. <br> <br>They said this Chiari is rare, <br>We don't know, so don't care. <br>And then they rolled their eyes. <br> <br>They gave more medications, <br>Left for their vacations, <br>Then I was drugged AND ill. <br> <br>Till one day in pain, <br>And finally insane, <br>I found the very best pill. <br> <br>This med was new, <br>I swear this is true, <br>It worked toward the inflamation. <br> <br>It was desguised it's true, <br>Not the regular brew. <br>They call it information! <br> <br>Now here is advice, <br>it's free. Ain't that nice? <br>I suggest that you lend me your ear. <br> <br>If your doctor's not healing, <br>And yukky you're feeling, <br>You STILL deserve the best care! <br> <br>So, look for the best, <br>Run from the rest. <br>Run very fast my friend! <br> <br>When you need good care, <br>Get the best, you hear? <br>This is not the end! <br> <br>And where is the best care? <br>Well you wandered in here. <br>That shows you are very rational. <br> <br>The information is here, <br>Pull up a chiar. At the <br>ChiariConnectionInt ernational! <br> <br>Chiari Connection International-Kathy <br> <br>

It makes me sad to think that <br>we are not all on the <br>same team to raise awareness. <br>In my guestbook two individuals <br>thought it would be nice for them <br>to try to discourage me from my <br>goals. I, along with others, <br>including Devin are trying to <br>raise awareness and yes it's <br>true I have chose not to have <br>the surgery but that is my <br>choice and not for anyone else <br>to be concerned with. I have asked <br>people for their permission before <br>submitting anything on my site that <br>was published by them. As far as <br>information, the information is the <br>same from most sites and that <br>can't be avoided. I do not feel <br>the need to show proof of my <br>condition to people who are just <br>out to tear people down. My <br>suggestions to those like that <br>is to look in the mirror and ask <br>yourself "How do I contribute to <br>the others?" I can look in the <br>mirror everyday knowing that I <br>am trying my very best to make <br>a difference and to lend a ear to <br>anyone in need. I will continue to <br>post resources and information <br>regardless as to whether it is <br>found some place else. For those <br>of you who have supported me <br>all along, I thank you from the <br>bottom of my heart...maybe these <br>two women can learn from everyone <br>else that if you dont have anything <br>nice to say....dont say it at all! <br>Still going.... <br>Carrie <br>

I am the one that asked Carrie to put the poem up on her site. I thought it IS a great poem about Chiari. I appreciate Kathy letting Carrie post it on her website. I dont think anyone should have to "prove" their condition. ANYONE that has Chiari wants the whole world to know about this condition. Maybe I shouldnt post on any site because I myself DO NOT HAVE CHIARI. (LMAO) But my son does and I am going to do everything I can and learn anything I can to help him. I am glad for sites like Carries and others. If it wasnt for sites and groups most of us would be left in the dark with NOBODY to talk to about Chiari. KEEP UP THE GOOD WORK CARRIE AND ALL OTHER PEOPLE WITH CHIARI SITES AND GROUPS!!!!!

4H Group Washes Cars For Chiari <br> <br> On July 7th, the Dark County, Ohio 4H Canine Capers joined the battle against Chiari by holding a car wash at the Grennville Kmart. In addition to raising money, each person who got their car washed received a Conquer Chiari brochure. <br> <br> The event was held in honor of Matthew, a Chiarian who was decompressed in January of this year. Matthew's cousin, Taelor (who is a member of the 4H group, came up with the idea of a organizing a Chiari Car Wash for their community service project. <br> <br> Congratulations to the Dark County, 4H Canine Capers for a job well done!! <br> <br> Story from Conquer Chiari Newsletter (Matthew is my son) <img alt="big grin" src="http://images.freewebs.com/Images/Smilies/Round/biggrin.gif"
> <br> <br> <br> <br> <br>

I am going to use this blog of yours to thank a few sites that have helped us raise awareness for our event. I would really like to Thank Rick from Conquer Chiari he has been a wonderful friend to me. He has helped us in our goal to raise awareness for Chiari and our event. Other thank you's go to Wishes and Rainbows and Givingachance.org for displaying our event. There are the yahoo message boards that have allowed us to post several different things concerning our event. And sites like yours Carrie that have posted our event. Thank you EVERYONE for helping us raise Awareness for Chiari and our event!!!<img alt="wink" src="http://images.freewebs.com/Images/Smilies/Round/wink.gif">
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CARRIE, THANKS FOR SHARING YOUR DIARY. I AM SORRY YOU HAVE TO SUFFER. WISH IT WASN'T SO. HOPE YOU FIND RELIEF. MY PRAYER FOR YOU, LORD, WRAP CARRIE IN YOUR HOLY PRESENCE, AND GUIDE HER STEPS AS SHE WALKS THROUGH THE TRIALS OF HER DAYS, MAY SHE DRAW CLOSER TO YOU, THROUGH THE PRAYERS OF OTHERS, AS SHE STRUGGLES TO COPE WITH HER PAIN.ALWAYS IN THE NAME OF JESUS. BLESSINGS TO YOU. NINA

Nina, thank you so much for your prayer and your positive energy. I was very touched that you thought of me and included me in your prayers. That is what keeps me going everyday...support from wonderful people like you! Thank you!!! <br>Carrie

I just have to take a moment to express how thankful I am with all the support I am receiving about the awareness event. Merideth and I are working extremly hard on this to make it as best as possible. We only hope it is well worth it to everyone...that will make it all worth it for us! Thank you all...so very much, I can't express enough how much the support has meant to me! Thank you, Thank you, and Thank you!!!!!!! <br>xxxooo <br>carrie

I am Carries best friend and have seen her going through all of the pain and suffering almost every day for about 5 years now. Also her listening to doctors tell her it was this or that, but never what the real problem was. So now that she has answers hopefully she can help others. And finally I just want to say that even though she moans and groans ALL DAY (just kidding) I still love you very much!!! Love <br> Amber

Are you familiar with Basilar Invagination? Can anyone speak to that diagnosis? My son has Chiari, Syringomyelia, & Basilar Invagination. I am told the last is the worse.

Upright MRI and Chiari info. <a href="http://tinyurl.com/9s5hu" target="_blank" rel="nofollow">http://tinyurl.com/9s5hu</a>

Hi , I was decompressed in 2006, but after a short while my symptoms started to return, I wanted to know if anyone out there is going through the same? since then I have been unable to work and this is taking a huge emotional stress on me. I was with a company for over 15 years and loved what I did,know I find myself at times that I cannot even concentrate long enough, much less do any physical activity. Just wanted to see if anyone is having sane issues. <br>Thanks

I feel so sad to hear that you've lost your job that you love. I would be interested to see if anyone would like to start a forum section about that in the forum on here. I am fortunate to still have my job and feel so sad when others can't continue to work. I will keep you in my thoughts!!! <br>Hugs to you Peter!