But in my defense I didn't mean to! Ha!
Today I had an interview with a reporter for one of the local newspapers. And aside from the fact that I made her cry, it went pretty well. Turns out my story is pretty amazing to someone who hasn't heard it before. She called me an inspiration, which is a little more than I expected but it felt good to see once again something good come from this crazy life. Let me explain. The other day while home sick I had an idea *gasp*. For those of you who know me, that can be a pretty scary thing. My ideas are usually pretty off the wall and slightly crazy. But they do seem to work out a lot. Anyways, I was sitting at home and I saw that one of the other Chiari Walk sites in Oklahoma were able to get their story on the news. What a great idea! The Walk is about 6 hours from here but that doesn't mean it doesn't need exposure. It doesn't mean people here in the Valley don't need to know about Chiari and ways they can help. And it definitely doesn't mean there aren't people here that might need someone to reach out to them and support them! So it got me thinking. Now, being the complete shy girl that I am (bahahaha) I decided to make a few phone calls to people I know that might be able to help. A few phone calls later and an email from a local reporter ends up in my email! Success!!! First the newspaper and then the news and then maybe world domination? Yes, world domination seems like the obvious next step!
When I was first diagnosed in 2008 I was terrified. The Internet is a double edged sword. You want to know all about your diagnosis but then you see all the horror stories as well. And when you are dealing with a major medical issue that is extremely scary. I only saw the bad situations. The message boards are filled with people who are suffering and hurting. They have nowhere else to turn at times because nobody else understands what we face. So they lean on each other. But for someone who is newly diagnosed that can be incredibly frightening. I believe there are plenty of success stories. People who have had the surgery and are doing relatively well. But they sort of disappear off the message boards. They move on and don't want to look back. And who can blame them? Why would you want to be reminded of what could happen? Because the simple truth about Chiari is that there is no cure. So why would you want to remind yourself of the suffering that comes with Chiari? And I did that too for awhile. I ran away from everything and everyone Chiari. After awhile though it hit me. I have been blessed with a pretty good recovery. I need to do something with it. I need to stand up and fight for awareness for people who cannot.
So world domination is, of course, my only option. Only then will people truly take Chiari seriously. So that is my plan. I realized last week that I keep saying I want to do more but I hadn't really done anything. Now I am. Now I am going to get out there. I am going to help spread the word. Most people have never even heard the word Chiari, let alone know what it is. And there are so many out there who have Chiari and need support. I want to be the positive story they read about. The story that gives them hope. Because at the end of the day the only thing we have is hope. If I can reach at least one person in the Valley then I will be happy. So keep an eye out in the papers or maybe even the news. You might see my face! Because after all, I am kinda a big deal!
Monday, August 29, 2011
Friday, August 26, 2011
Must be doing something right....
Good Morning!
For the past few days I have been knocked down by some sort of strange mutant cold that I am almost positive has a mind of it's own. It is having entirely too much fun messing with me and I am on the verge of conquering it. But this morning this evil cold jumped to Niko. Little man is now sick with pretty much the same symptoms I have been having. So we turned the living room into our own little hospital room. The couches have pillows and blankies. We are beginning our Star Trek Movie Marathon and I have homemade chicken soup for lunch. Sick days suck but once again I have my blessings. As little man was lying on the couch, curled up and not feeling well he looked up and asked me if I needed anything. Completely on his own. I said I was ok and he said he could get me some water if I was thirsty. Now, being a Mom, I had to fight back the tears. Here was this little boy, sick and sleepy and he was worried about me. What an insanely proud moment.
One of my greatest wishes for my children is that they lead a life of serving others. I want them to, of course, attend to their needs but try to focus more on others. I truly believe that if you live your life serving others you will get more joy out of life then just trying to serve yourself. When we focus so much on our own needs we loose sight of what is really important. Instead of focusing on "stuff" we should be focusing on each other. We should be focusing on the needs of others.
In the weeks before my surgery I was terrified. There was no way to know how the surgery would go. I had heard the horror stories and I had lost friends. Every morning I would wake up with the knowledge that May 27, 2010 could be my last day on this planet. What a traumatic time that was. But in those weeks I learned a great deal. Facing your own mortality does things to you. It puts your life into perspective. And man does it mess with your head. But it made me realize so much. The things I wanted out of life changed. The things I thought about were not the car I drove or the clothes I had or the money in the bank. I never even thought about things like that. Instead, my mind focused on the memories that I had. The things I did with my kids and everyone else. The flashy things all disappeared. They meant nothing. I never once wished I had a nicer anything. I wished I had spent more time with my lil monkeys. I wished I had spent more time with my family and friends. Not buying stuff, but making memories. I wished I had spent more time leaving a legacy on this Earth. Talk about mixing up my bucket list! But I wouldn't change that. I am glad that I got to see life differently. I sometimes wish others could have just a moment like that. A defining moment in their life that makes them see what is truly important. That it is not what we get in this world that matters but what we give.
My little man is learning to serve others. What a joyful realization to have as a Mother. At a time where it would be completely and totally understandable for him to just focus on himself he is trying to help me. What an amazing little man I have been blessed with!
For the past few days I have been knocked down by some sort of strange mutant cold that I am almost positive has a mind of it's own. It is having entirely too much fun messing with me and I am on the verge of conquering it. But this morning this evil cold jumped to Niko. Little man is now sick with pretty much the same symptoms I have been having. So we turned the living room into our own little hospital room. The couches have pillows and blankies. We are beginning our Star Trek Movie Marathon and I have homemade chicken soup for lunch. Sick days suck but once again I have my blessings. As little man was lying on the couch, curled up and not feeling well he looked up and asked me if I needed anything. Completely on his own. I said I was ok and he said he could get me some water if I was thirsty. Now, being a Mom, I had to fight back the tears. Here was this little boy, sick and sleepy and he was worried about me. What an insanely proud moment.
One of my greatest wishes for my children is that they lead a life of serving others. I want them to, of course, attend to their needs but try to focus more on others. I truly believe that if you live your life serving others you will get more joy out of life then just trying to serve yourself. When we focus so much on our own needs we loose sight of what is really important. Instead of focusing on "stuff" we should be focusing on each other. We should be focusing on the needs of others.
In the weeks before my surgery I was terrified. There was no way to know how the surgery would go. I had heard the horror stories and I had lost friends. Every morning I would wake up with the knowledge that May 27, 2010 could be my last day on this planet. What a traumatic time that was. But in those weeks I learned a great deal. Facing your own mortality does things to you. It puts your life into perspective. And man does it mess with your head. But it made me realize so much. The things I wanted out of life changed. The things I thought about were not the car I drove or the clothes I had or the money in the bank. I never even thought about things like that. Instead, my mind focused on the memories that I had. The things I did with my kids and everyone else. The flashy things all disappeared. They meant nothing. I never once wished I had a nicer anything. I wished I had spent more time with my lil monkeys. I wished I had spent more time with my family and friends. Not buying stuff, but making memories. I wished I had spent more time leaving a legacy on this Earth. Talk about mixing up my bucket list! But I wouldn't change that. I am glad that I got to see life differently. I sometimes wish others could have just a moment like that. A defining moment in their life that makes them see what is truly important. That it is not what we get in this world that matters but what we give.
My little man is learning to serve others. What a joyful realization to have as a Mother. At a time where it would be completely and totally understandable for him to just focus on himself he is trying to help me. What an amazing little man I have been blessed with!
Tuesday, August 23, 2011
The FB Note that created a blogger....
After writing many "notes" on fb and only publishing the "positive" ones I decided last week to post one that had the raw emotions that I sometimes face. I had never previously posted one like that, even though I had written them, for fear of appearing weak. With Chiari you put on a brave face everyday. Not because people aren't there to support you but because if you put on any other face, you risk breaking down completely. And no matter how awesome a person you may be (which lets be honest I am pretty freakin awesome...lol) nobody wants to be around someone who is on the verge of tears at any given moment. But I learned after posting this note that sometimes it is far braver to let your true emotions out sometimes. It doesn't mean I am weak, it just means I am human. After posting this, I received a few comments from Chiarians and non-Chiarians thanking me for my honesty. I also received a few private messages thanking me for putting into words what they were feeling. Thanking me for helping them find a way to voice their fears. Wow! I never ever expected to hear that. So here is the note that started my wheels turning to starting a blog:
"Aww manno! Is she really going to talk about this again!? Geesh, it's not like it is a big deal or anything. I mean, it's not like it was brain surgery or anything, so suck it up.....oh wait...what....it WAS brain surgery???
Yes, I am in one of those moods. They sneak up on me when I am at my weakest moments. The moments where the pain is too much. When the meds don't help and I just want to go to sleep and wake up another person. Or wake up and have this all be a horrifically long nightmare. But sadly, this is my life. These are the times I want to scream that life is not fair, that I wish I had never heard the word Chiari and where I could just forget for a moment that my life will never be normal. Now I know, nobody would ever classify me as normal anyways but I wish I was. I wish I could get up every morning like normal people. Get ready for work without any pain. Wake my children up without worry that one day I may not have the strength to do that. Send them off to school without the jab of emotions that come with worry that Chiari could affect me being the Mother that they deserve. Head off to my normal job and have a normal day. Never once saying a silent prayer for my fellow Chiarians who are suffering. Never once feeling a weird stab of pain in my head or neck or hands or anywhere else and panicking that it might turn into something worse. Or better yet, I wish I could make it just one day without the memories of the two weeks before my surgery haunting me. The helplessness that comes with facing your own mortality and this condition.
These weak moments are not just because of the pain. They have meds for that, and trust me, once I say "brain surgery" the doctors have no prob giving me pain meds. And even when they don't work I know it will pass. The pain is just the beginning. It is the other side of Chiari that makes me weak. It is the emotional trauma (may sound dramatic, but trust me it is traumatic) that gets to me. Not only do I have to deal with the stress that I faced before the surgery, I have to deal with the fact that I am not even cured. I faced and recovered from a horrible surgery only to have the doctors tell me they "hope" I will be ok. That "hopefully" my quality of life will be ok. That "hopefully" I will not need repeat procedures and something called "brain slumping" (yes, it is as bad as it sounds). HOPEFULLY!?! Sometimes I can put on a brave face. I can do my best impersonation of a positive Amy. I can tell myself and everyone around me that I WILL be ok. That I am so badass that I will never have to worry. But that is a lie. A great big lie to hide the fact that everday I am terrified of the future. Every time my head hurts it is the emotional side that hurts the worst. Because I cannot deny the fact that I have Chiari. I cannot pretend to be fine. All I can do is cry and question why I have to endure this. Wonder why this is happening to me. And in these moments I can't find the positives. I forget that I am blessed to be alive. That I am blessed that I only have these headaches occasionally. That there are Chiarians everywhere who have them everyday. I forget that I am one of the "lucky" ones. Because the truth is, I am.
But I don't want to be a Lucky Chiarian. I want to be normal. I want to go for a run and ride roller coasters. I want to jump outta a plane and white water raft. I want to tuck my kids in every night and know that I will always be able to take care of them. I took the kids to Sea World last week and Niko asked if we could ride one of the coasters. Before I could respond he, innocently enough, said, "Oh I forgot, your broken". I know he didn't mean it the way it sounded but I want to live my life without constantly remembering that I broken. Now I realize that this isn't my normal happy self. But the truth is I want people to see this side of the condition as well. I have spent the last 2 years sugar coating the realities that I face so people don't worry. And so that I don't appear weak. But this is me. Most days I am strong. But today I am not. Today I am hurting. Today I am in more pain than a normal person could ever imagine. Today I am admitting what I have been too afraid to admit, I am afraid. I have had these days before. So I know tomorrow will be better. I know that days like today are a part of my life now. And tomorrow I will go back to my happy self and continue to fight for Chiarians who cannot. But today, I am throwing a tantrum!"
That is my note. It is not pretty. It is not happy or exciting. But it is real. It is true raw emotions that come at my weakest moments. I don't write too many like that, kinda goes against my need to stay positive. But sometimes it is ok to let your emotions take over. Have a good cry and then get back up, brush the dirt off your shoulders and keep on going. I mean, without moments like that how can we ever truly appreciate the good times!?!
"Aww manno! Is she really going to talk about this again!? Geesh, it's not like it is a big deal or anything. I mean, it's not like it was brain surgery or anything, so suck it up.....oh wait...what....it WAS brain surgery???
Yes, I am in one of those moods. They sneak up on me when I am at my weakest moments. The moments where the pain is too much. When the meds don't help and I just want to go to sleep and wake up another person. Or wake up and have this all be a horrifically long nightmare. But sadly, this is my life. These are the times I want to scream that life is not fair, that I wish I had never heard the word Chiari and where I could just forget for a moment that my life will never be normal. Now I know, nobody would ever classify me as normal anyways but I wish I was. I wish I could get up every morning like normal people. Get ready for work without any pain. Wake my children up without worry that one day I may not have the strength to do that. Send them off to school without the jab of emotions that come with worry that Chiari could affect me being the Mother that they deserve. Head off to my normal job and have a normal day. Never once saying a silent prayer for my fellow Chiarians who are suffering. Never once feeling a weird stab of pain in my head or neck or hands or anywhere else and panicking that it might turn into something worse. Or better yet, I wish I could make it just one day without the memories of the two weeks before my surgery haunting me. The helplessness that comes with facing your own mortality and this condition.
These weak moments are not just because of the pain. They have meds for that, and trust me, once I say "brain surgery" the doctors have no prob giving me pain meds. And even when they don't work I know it will pass. The pain is just the beginning. It is the other side of Chiari that makes me weak. It is the emotional trauma (may sound dramatic, but trust me it is traumatic) that gets to me. Not only do I have to deal with the stress that I faced before the surgery, I have to deal with the fact that I am not even cured. I faced and recovered from a horrible surgery only to have the doctors tell me they "hope" I will be ok. That "hopefully" my quality of life will be ok. That "hopefully" I will not need repeat procedures and something called "brain slumping" (yes, it is as bad as it sounds). HOPEFULLY!?! Sometimes I can put on a brave face. I can do my best impersonation of a positive Amy. I can tell myself and everyone around me that I WILL be ok. That I am so badass that I will never have to worry. But that is a lie. A great big lie to hide the fact that everday I am terrified of the future. Every time my head hurts it is the emotional side that hurts the worst. Because I cannot deny the fact that I have Chiari. I cannot pretend to be fine. All I can do is cry and question why I have to endure this. Wonder why this is happening to me. And in these moments I can't find the positives. I forget that I am blessed to be alive. That I am blessed that I only have these headaches occasionally. That there are Chiarians everywhere who have them everyday. I forget that I am one of the "lucky" ones. Because the truth is, I am.
But I don't want to be a Lucky Chiarian. I want to be normal. I want to go for a run and ride roller coasters. I want to jump outta a plane and white water raft. I want to tuck my kids in every night and know that I will always be able to take care of them. I took the kids to Sea World last week and Niko asked if we could ride one of the coasters. Before I could respond he, innocently enough, said, "Oh I forgot, your broken". I know he didn't mean it the way it sounded but I want to live my life without constantly remembering that I broken. Now I realize that this isn't my normal happy self. But the truth is I want people to see this side of the condition as well. I have spent the last 2 years sugar coating the realities that I face so people don't worry. And so that I don't appear weak. But this is me. Most days I am strong. But today I am not. Today I am hurting. Today I am in more pain than a normal person could ever imagine. Today I am admitting what I have been too afraid to admit, I am afraid. I have had these days before. So I know tomorrow will be better. I know that days like today are a part of my life now. And tomorrow I will go back to my happy self and continue to fight for Chiarians who cannot. But today, I am throwing a tantrum!"
That is my note. It is not pretty. It is not happy or exciting. But it is real. It is true raw emotions that come at my weakest moments. I don't write too many like that, kinda goes against my need to stay positive. But sometimes it is ok to let your emotions take over. Have a good cry and then get back up, brush the dirt off your shoulders and keep on going. I mean, without moments like that how can we ever truly appreciate the good times!?!
Welcome!
A little about me....
My name is Amy. I am a born and raised Cali girl who learned to have a love of cooking from her Daddy. I believe God has blessed me in more ways than I will ever truly ever be able to appreciate, although I will keep trying to count them. My greatest blessing are my amazing children. They are my very reason for living and give me more strength to make it through the storms. I am surrounded by the most amazing people in the world. My family and friends bring me more joy and happiness than I could ever hope to repay. I love deeper than I should at times and even though it has lead me into heartache in the past I refuse to love any less. I have also been blessed to have something called Chiari Malformation. It may not be your standard "blessing" and at times it is harder than I can even put into words, but it has taught me more about life than your average 30's something adult has the opportunity to learn. At 30 years old you should still feel invincible. But just a few short months after my 30th birthday and as a newly single Mom, I underwent major brain surgery at Stanford University and lived to tell the stories. The emotional and physical trauma most people will never be able to understand and for that I am grateful. The scar may be covered by my hair but I will not let anything cover my voice for my Chiari family. I will spend every "healthy" day I have fighting for those who cannot and for those that have lost their lives due to this condition.
But this blog isn't just about Chiari. It is about finding simple blessings in everyday life. It will be about challenging myself to grow. And about finding new ways to teach my children to have a servant's heart. But most importantly it will be a chance for me to reflect on life, even if nobody else reads it. Because no matter what happens in this life, I am not guaranteed a tomorrow so I will make the most of each and everyday!
My name is Amy. I am a born and raised Cali girl who learned to have a love of cooking from her Daddy. I believe God has blessed me in more ways than I will ever truly ever be able to appreciate, although I will keep trying to count them. My greatest blessing are my amazing children. They are my very reason for living and give me more strength to make it through the storms. I am surrounded by the most amazing people in the world. My family and friends bring me more joy and happiness than I could ever hope to repay. I love deeper than I should at times and even though it has lead me into heartache in the past I refuse to love any less. I have also been blessed to have something called Chiari Malformation. It may not be your standard "blessing" and at times it is harder than I can even put into words, but it has taught me more about life than your average 30's something adult has the opportunity to learn. At 30 years old you should still feel invincible. But just a few short months after my 30th birthday and as a newly single Mom, I underwent major brain surgery at Stanford University and lived to tell the stories. The emotional and physical trauma most people will never be able to understand and for that I am grateful. The scar may be covered by my hair but I will not let anything cover my voice for my Chiari family. I will spend every "healthy" day I have fighting for those who cannot and for those that have lost their lives due to this condition.
But this blog isn't just about Chiari. It is about finding simple blessings in everyday life. It will be about challenging myself to grow. And about finding new ways to teach my children to have a servant's heart. But most importantly it will be a chance for me to reflect on life, even if nobody else reads it. Because no matter what happens in this life, I am not guaranteed a tomorrow so I will make the most of each and everyday!
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