"Christmas night. As the evening falls like the curtain on a long-awaited show, I hold my children, just one last time this season, in the warm bath of the Christmas tree lights.
And I wonder.
Did the Yuletide parties and gatherings fill them with a sense of family? Did the Christmas rituals unite them in a shared commonality with their fellowmen? Did the music of Christmas heal them of a cynical world and inspire them with hopes of something greater? Did the gifts they shared teach them that the greatest gifts are received in the giving? Did the once -wrapped presents of Christmas remind them of a greater gift given many Christmases ago?
And I wonder.
Is there enough awe in my children, enough magic left, to save a world? For within my heart I lament a great truth...that the only promise of childhood is that it will end. And I wonder what I have given them to take its place.
And is it enough?"
Wishing you and yours a very Merry Christmas and
Happy New Year.
Read more!
December 22, 2007
December 13, 2007
Rosanne Cash CM Success
Many of you might have heard the country singer Rosanne Cash, daughter of the country legend Johnny Cash, recently underwent decompression surgery for Chiari. She is reported as doing well and is looking forward to getting back into the recording studios soon! The story of her success is truly an inspiration to those of us with CM.
Please visit the following link to read her story: http://www.cnn.com/2007/SHOWBIZ/Music/12/12/people.rosannecash.ap/index.html
Read more!
Please visit the following link to read her story: http://www.cnn.com/2007/SHOWBIZ/Music/12/12/people.rosannecash.ap/index.html
December 08, 2007
Happy Holidays!
As a member of the WACMA message board, I've read several posts from other members located in Central Florida who were interested in knowing if there is a Chiari support group here locally. I too was looking for one, found none, so I decided to start one myself!
You can find it under Yahoo Groups as Central FL Chiari Support Group or simply click on the Yahoo icon at the bottom of this page to join! Eventually, I hope to set up meetings to be held monthly.
It's so important to have someone who truly understands exactly what you're going through. If you need an ear to listen, a shoulder to lean on, or a word of encouragement, you'll find it here.
Happy Holidays! Read more!
You can find it under Yahoo Groups as Central FL Chiari Support Group or simply click on the Yahoo icon at the bottom of this page to join! Eventually, I hope to set up meetings to be held monthly.
It's so important to have someone who truly understands exactly what you're going through. If you need an ear to listen, a shoulder to lean on, or a word of encouragement, you'll find it here.
Happy Holidays! Read more!
November 27, 2007
"It's The Most Wonderful Time Of The Year!"
Thanksgiving is over and that can only mean one thing...CHRISTMAS IS HERE! I must admit, I am a die hard Christmas fanatic, but it's all good. I know I'm not alone on this one!
Many of you on the message boards have asked where you can purchase Chiari Gifts. I too was interested but never really found much online so I created a shop myself. I will be donating a portion of the proceeds to Wishes and Rainbows. They are a non-profit organization that assists those with CM and other related disorders in meeting the medical costs, traveling expenses and personal financial assistance to those who qualify. Getting proper medical care to treat Chiari and Syringomyelia can be extremely costly for some...financially devastating for others. The folks at Wishes and Rainbows are dedicated to helping those in need of this care, who otherwise might go left untreated.
As you purchase your holiday gifts this year, take a moment to browse our shop at the link provided below. You just might be giving someone the best gift of all...a chance. Read more!
Many of you on the message boards have asked where you can purchase Chiari Gifts. I too was interested but never really found much online so I created a shop myself. I will be donating a portion of the proceeds to Wishes and Rainbows. They are a non-profit organization that assists those with CM and other related disorders in meeting the medical costs, traveling expenses and personal financial assistance to those who qualify. Getting proper medical care to treat Chiari and Syringomyelia can be extremely costly for some...financially devastating for others. The folks at Wishes and Rainbows are dedicated to helping those in need of this care, who otherwise might go left untreated.
As you purchase your holiday gifts this year, take a moment to browse our shop at the link provided below. You just might be giving someone the best gift of all...a chance. Read more!
November 19, 2007
Just Another Manic Monday...
With Thanksgiving just around the corner, I thought I would post this evening while I actually had the chance!
There are days when I must admit that I feel anything but "thankful". It's so much easier to make a list of the negatives it seems; work, bills, finances, debt, traffic, kids arguing, family/relationship dynamics, the paper boy that keeps throwing your newspaper in the puddle!
All of these things are bad enough on their own! Add to them a list of Chiari woes; pain, exhaustion, "brain fog" and you've got yourself somebody begging for a nice little white padded cell! Ahh...c'mon. You KNOW you've thought about it!
So many of us allow ourselves to let the affects of CM "steal our joy." Haven't we let it steal enough already? While contemplating what to post tonight all I could think of was the aggravation of the day's events. The more I thought about it, the worse I felt. It was stealing my joy.
I began to reflect on the positives in my life; a good job so I can pay my bills...a reliable vehicle that keeps me in traffic and not on the side of the road. Great kids that argue only amongst themselves, not with their teachers, peers or with me. The fact that I have a family and sweetheart who loves me is pretty dynamic in itself. And should I ever order the paper, I have no puddles outside my door to throw it in!
As for my Chiari, I'm thankful that I can still feel most of the pain...when I'm exhausted from the pain I have a comfortable bed to lay down in...and when I'm "foggy" I never forget what truly needs to be remembered. All the above.
Wishing you and yours a very Happy and Blessed Thanksgiving. Read more!
There are days when I must admit that I feel anything but "thankful". It's so much easier to make a list of the negatives it seems; work, bills, finances, debt, traffic, kids arguing, family/relationship dynamics, the paper boy that keeps throwing your newspaper in the puddle!
All of these things are bad enough on their own! Add to them a list of Chiari woes; pain, exhaustion, "brain fog" and you've got yourself somebody begging for a nice little white padded cell! Ahh...c'mon. You KNOW you've thought about it!
So many of us allow ourselves to let the affects of CM "steal our joy." Haven't we let it steal enough already? While contemplating what to post tonight all I could think of was the aggravation of the day's events. The more I thought about it, the worse I felt. It was stealing my joy.
I began to reflect on the positives in my life; a good job so I can pay my bills...a reliable vehicle that keeps me in traffic and not on the side of the road. Great kids that argue only amongst themselves, not with their teachers, peers or with me. The fact that I have a family and sweetheart who loves me is pretty dynamic in itself. And should I ever order the paper, I have no puddles outside my door to throw it in!
As for my Chiari, I'm thankful that I can still feel most of the pain...when I'm exhausted from the pain I have a comfortable bed to lay down in...and when I'm "foggy" I never forget what truly needs to be remembered. All the above.
Wishing you and yours a very Happy and Blessed Thanksgiving. Read more!
November 12, 2007
Years before I was diagnosed with CM I'd been experiencing symptoms such as; blinding headaches, severe pain in my neck, fatigue, dizziness, numbness in my face, etc. I was led to believe I had everything from pinched nerves to chronic fatigue syndrome.
Mother's Day of 2005 I woke with a feeling of sheer panic. I had lost all feeling on the right side of my body. Taking into consideration my family history, the first thought that came to mind was a stroke. A trip to the ER and numerous tests later, revealed a diagnosis of Chiari Malformation.
At 3 A.M. the neurologist on duty came flying into my room, threw on the light, said something about my brain being crowded and was basically "sliding down" but it was not all that uncommon...follow up with my regular physician upon discharge. That was it. I had no CLUE what I had, what to expect or what to do about it. All I knew was that I was in pain, I was exhausted and scared. Over two years later several doctors have followed, all with the same conclusion; "It's not the Chiari that's causing your symptoms...your herniation is not significant enough...maybe your just stressed out."
I know many of you or perhaps someone you love has experienced the same, over and over again.
I hope that this blog, in some small way, can put us one step closer to increased awareness, education and support. Together we CAN make a difference! Read more!
Mother's Day of 2005 I woke with a feeling of sheer panic. I had lost all feeling on the right side of my body. Taking into consideration my family history, the first thought that came to mind was a stroke. A trip to the ER and numerous tests later, revealed a diagnosis of Chiari Malformation.
At 3 A.M. the neurologist on duty came flying into my room, threw on the light, said something about my brain being crowded and was basically "sliding down" but it was not all that uncommon...follow up with my regular physician upon discharge. That was it. I had no CLUE what I had, what to expect or what to do about it. All I knew was that I was in pain, I was exhausted and scared. Over two years later several doctors have followed, all with the same conclusion; "It's not the Chiari that's causing your symptoms...your herniation is not significant enough...maybe your just stressed out."
I know many of you or perhaps someone you love has experienced the same, over and over again.
I hope that this blog, in some small way, can put us one step closer to increased awareness, education and support. Together we CAN make a difference! Read more!
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