Please visit https://www.conquerchiari.org/ccwaa12/AmyValentino to register as a walker or to donate to the team!
Thank you from the bottom of my heart to the top of my big ol brain!!!
Friday, May 18, 2012
Monday, May 7, 2012
Blessings and Brain Fog
Yesterday started out with the rare but dreaded "Brain Fog". Laying in bed in the morning, I could feel it rolling in. If you do not understand what Brain Fog is like, let me explain. Imagine, for a second, taking a hose, attaching it to your head and filling it with water. As you fill it up, your head gets heavy. Things seem to slow down and move in slow motion. It isn't so much pain as much as it is annoying. It feels as though you have a pumpkin on your head, like you are one giant bobble head. Or at least for me, that is what it is like.
I have been here before. It is rare, but it usually comes after days where I may have pushed it too far. And Saturday I had an event, so it is safe to say, I pushed it. Truth is, I wouldn't have it any other way. I refuse to slow down anymore than I have to. And trust me, there are times where my body forces me to slow down. Most people don't understand. It is easy to say, "Amy, slow down" or "Amy, it's not worth it". But not when you are the one living with it. I accept that my life will never be the same. I agree that there are things I cannot do. Running another Mud Run is out. White Water Rafting is out. And, against my will, doing my own stunts as a ninja is definitely out. But everyday things like work, are not out. In fact, they are what keep me going. I have to keep pushing through. I like pushing myself. As long as I am pushing myself, I am proving that I haven't given up.
But there are times where I have to listen to my body. And days like yesterday serve as a reminder. Pushing myself can be rewarding. I am able to do things I wasn't able to do 2 years ago. I have come a long way in my recovery. Most days I am doing great. Yesterday morning, I was not. So I took it easy. I moved slowly and tried to relax. I tried not to focus on what I couldn't do and more on what I could do. I did have a moment of tears. I was frustrated but Jason quickly reminded me that I was alive and able to have our morning coffee together and that is a huge blessing. He always knows exactly what to say to me to help ease my frustrations and put things into perspective. And after some meds and relaxing, I was up and at em!
Now here are my blessings. Jason and Niko decided they needed some "Dude Time" so they hit he golf course. Kylie and I decided that with the boys gone we were going to shop. We were shopping for decor for Jason and I's upcoming wedding when it hit me. As Kylie and I were rocking out to her Big Time Rush CD, belting out one of the songs I realized I was happy. Not just "having a good time happy" but down to my soul happy. The blessing in living with Chiari is that the little things like belting out boy band songs with your daughter mean the world to you. Every thing you can do, matters. The blessing in living with Chiari is that you appreciate each and every good moment much more. So yesterday, was one of the best days I have had in awhile. And it all started out with a morning filled with pain. But because of that pain, I was able to appreciate the rest of the day so much more. I might have missed the beauty in an ordinary day had it not been for Chiari. And for that, I am blessed and grateful to have Chiari.
My question to you is simple. What are you missing? What did you take for granted today? My guess is that there were little things you may have missed. I am guilty of that too at times. But when you are faced with a condition that has no cure you can either allow it to bring you down or you can use it to see the beauty in all the areas of your life.
So to my Chiari friends who are in pain, know this. I understand your pain. I understand your frustrations and your fears. My heart aches for those of you who suffer daily. You are not alone. We are in this together. I will keep searching for the "Little Wins" in my life so that I can keep fighting for a cure. I hope in some way, today you will find a handful of "Little Wins". Because if you stop looking for them, Chiari will always win. Chairi may win at times, but it will never break my spirit. And I hope it never breaks yours.
I have been here before. It is rare, but it usually comes after days where I may have pushed it too far. And Saturday I had an event, so it is safe to say, I pushed it. Truth is, I wouldn't have it any other way. I refuse to slow down anymore than I have to. And trust me, there are times where my body forces me to slow down. Most people don't understand. It is easy to say, "Amy, slow down" or "Amy, it's not worth it". But not when you are the one living with it. I accept that my life will never be the same. I agree that there are things I cannot do. Running another Mud Run is out. White Water Rafting is out. And, against my will, doing my own stunts as a ninja is definitely out. But everyday things like work, are not out. In fact, they are what keep me going. I have to keep pushing through. I like pushing myself. As long as I am pushing myself, I am proving that I haven't given up.
But there are times where I have to listen to my body. And days like yesterday serve as a reminder. Pushing myself can be rewarding. I am able to do things I wasn't able to do 2 years ago. I have come a long way in my recovery. Most days I am doing great. Yesterday morning, I was not. So I took it easy. I moved slowly and tried to relax. I tried not to focus on what I couldn't do and more on what I could do. I did have a moment of tears. I was frustrated but Jason quickly reminded me that I was alive and able to have our morning coffee together and that is a huge blessing. He always knows exactly what to say to me to help ease my frustrations and put things into perspective. And after some meds and relaxing, I was up and at em!
Now here are my blessings. Jason and Niko decided they needed some "Dude Time" so they hit he golf course. Kylie and I decided that with the boys gone we were going to shop. We were shopping for decor for Jason and I's upcoming wedding when it hit me. As Kylie and I were rocking out to her Big Time Rush CD, belting out one of the songs I realized I was happy. Not just "having a good time happy" but down to my soul happy. The blessing in living with Chiari is that the little things like belting out boy band songs with your daughter mean the world to you. Every thing you can do, matters. The blessing in living with Chiari is that you appreciate each and every good moment much more. So yesterday, was one of the best days I have had in awhile. And it all started out with a morning filled with pain. But because of that pain, I was able to appreciate the rest of the day so much more. I might have missed the beauty in an ordinary day had it not been for Chiari. And for that, I am blessed and grateful to have Chiari.
My question to you is simple. What are you missing? What did you take for granted today? My guess is that there were little things you may have missed. I am guilty of that too at times. But when you are faced with a condition that has no cure you can either allow it to bring you down or you can use it to see the beauty in all the areas of your life.
So to my Chiari friends who are in pain, know this. I understand your pain. I understand your frustrations and your fears. My heart aches for those of you who suffer daily. You are not alone. We are in this together. I will keep searching for the "Little Wins" in my life so that I can keep fighting for a cure. I hope in some way, today you will find a handful of "Little Wins". Because if you stop looking for them, Chiari will always win. Chairi may win at times, but it will never break my spirit. And I hope it never breaks yours.
Thursday, May 3, 2012
Pre-Surgery Babble
Writing is my release, I love to do it. Sometimes I write long blogs and they don't even get posted. Sometimes the thoughts in my head move so quickly that writing them down is the only way for me to communicate what I am thinking. So I am copying some of my old notes. They were notes I wrote prior to my surgery. Notes that never made it to this blog, only to my Facebook.
I was asked the other day by someone with Chiari what brain surgery was like. Truth is, I am not quite sure I am ready to write about that whole experience just yet. I am slowly working up the nerve but I am just not there yet. But I will share some of the thoughts I was experiencing prior to my surgery. Most of you will never understand fully what I went through. And for that, I am grateful. But for some of the people who read this, you may completely understand because you have been there yourself.
The Countdown Begins!
I am scheduled for surgery on May 27th at Stanford University Hospital. My neurosurgeon and his team are some of the best there are and for that I am grateful. Even though these last few weeks have been a roller coaster of emotions for me, I am sure that these coming weeks will be an even bigger challenge for me.
It amazes me the thoughts that run through my mind now. I tell myself, what seems like hundreds of times daily now, that I will be fine. That I will make it through this and be back to my normal self in no time. Here is a sample of my thought process at any given moment (bare with me, usually my own logic confuses me lol)!
The evil "What If":
I tell myself that I will get to do the things that I have always wanted to do and that I will get to see my kids grow up. But the "What If's" are getting bigger by the hour. What if something goes wrong? What if I never heal properly? What if they remove too much and it makes things worse? The list goes on and on. And then the "What If's" turn to fear. And then to panic. It is in these moments that I have to breathe and search for peace. Whether it is in a short prayer or a simple hug from one of my kids or a friend who sends a simple "*hugs" text (Thanks for that Tara) I have to find that peace. It seems that the "What If's" can quickly control your entire life. The one thing I refuse to do is let it control me. I may have weak moments but I will get through.
The dreaded "Why Me!?!":
Oh this is a sneaky emotion! The "Why Me!?!" can sneak up and get you when you least expect it. Usually this emotion is following my failure to get the "What If's" under control properly. What did I do to deserve this? Why is this happening to ME!?! Why, why, why!!! Well here is the reality: Sometimes things just suck! There is no reason, no magic answer. The only answer is that it did happen and I have two choices. I can either sit in my house shouting about how unfair it is that I am barely 30 years old and facing major brain surgery OR I can put on my big girl panties and deal with it. Sometimes I just want to shout. I just want to scream and yell and cry. Thankfully, I have people around me that will listen to my tantrums and just be there for me. But most of the time I put on my big panties and I face the day. I have two children who depend on me to be strong. I need to show them and myself that you cannot let your emotions control you and that you have to choose your attitude. At the end of the day I cannot change what is happening. I can only trust that what is meant to be is happening and be grateful for each and every day that I have.
The misguided "What do I want to do today":
This is the hardest one for me. I tell myself that I need to live each day to the fullest. That I never know what will happen. That I could just as easily get into a car crash on the way to the hospital. So I find comfort in trying to live each with a little more love and a little more happiness. I try to find something new to do in each day and take lots of pictures. Sounds like great logic to me! Except here is the problem: While this seems like a take charge attitude it can actually lead you back to the evil "What If" emotion. When you "Seize each day" knowing full well you are facing a serious surgery you are reminded of the biggest "What If" of all. What if I don't make it through this surgery? And that is one "What If" I struggle with. So my roller coaster of emotions starts again.
Most of the time I am my normal self. So if you catch me on a ride just bare with me. If you are reading this and have already witnessed me on one of my rides thank you. Thank you for understanding. Thank you for being a shoulder to cry on. Thank you for giving me strength. I am finding some sort of weird strength in writing these notes. Maybe it is because I am acknowledging that I am afraid or maybe it is because in my own little way I am flipping off my fear and not letting it control me (most of the time). I don't know but either way I will get through this because I am a damn princess and that is what princess' do! ;o)
Holy Freak Out Batman...Brain Surgery in 2 Weeks!
I was asked the other day by someone with Chiari what brain surgery was like. Truth is, I am not quite sure I am ready to write about that whole experience just yet. I am slowly working up the nerve but I am just not there yet. But I will share some of the thoughts I was experiencing prior to my surgery. Most of you will never understand fully what I went through. And for that, I am grateful. But for some of the people who read this, you may completely understand because you have been there yourself.
The Countdown Begins!
I am scheduled for surgery on May 27th at Stanford University Hospital. My neurosurgeon and his team are some of the best there are and for that I am grateful. Even though these last few weeks have been a roller coaster of emotions for me, I am sure that these coming weeks will be an even bigger challenge for me.
It amazes me the thoughts that run through my mind now. I tell myself, what seems like hundreds of times daily now, that I will be fine. That I will make it through this and be back to my normal self in no time. Here is a sample of my thought process at any given moment (bare with me, usually my own logic confuses me lol)!
The evil "What If":
I tell myself that I will get to do the things that I have always wanted to do and that I will get to see my kids grow up. But the "What If's" are getting bigger by the hour. What if something goes wrong? What if I never heal properly? What if they remove too much and it makes things worse? The list goes on and on. And then the "What If's" turn to fear. And then to panic. It is in these moments that I have to breathe and search for peace. Whether it is in a short prayer or a simple hug from one of my kids or a friend who sends a simple "*hugs" text (Thanks for that Tara) I have to find that peace. It seems that the "What If's" can quickly control your entire life. The one thing I refuse to do is let it control me. I may have weak moments but I will get through.
The dreaded "Why Me!?!":
Oh this is a sneaky emotion! The "Why Me!?!" can sneak up and get you when you least expect it. Usually this emotion is following my failure to get the "What If's" under control properly. What did I do to deserve this? Why is this happening to ME!?! Why, why, why!!! Well here is the reality: Sometimes things just suck! There is no reason, no magic answer. The only answer is that it did happen and I have two choices. I can either sit in my house shouting about how unfair it is that I am barely 30 years old and facing major brain surgery OR I can put on my big girl panties and deal with it. Sometimes I just want to shout. I just want to scream and yell and cry. Thankfully, I have people around me that will listen to my tantrums and just be there for me. But most of the time I put on my big panties and I face the day. I have two children who depend on me to be strong. I need to show them and myself that you cannot let your emotions control you and that you have to choose your attitude. At the end of the day I cannot change what is happening. I can only trust that what is meant to be is happening and be grateful for each and every day that I have.
The misguided "What do I want to do today":
This is the hardest one for me. I tell myself that I need to live each day to the fullest. That I never know what will happen. That I could just as easily get into a car crash on the way to the hospital. So I find comfort in trying to live each with a little more love and a little more happiness. I try to find something new to do in each day and take lots of pictures. Sounds like great logic to me! Except here is the problem: While this seems like a take charge attitude it can actually lead you back to the evil "What If" emotion. When you "Seize each day" knowing full well you are facing a serious surgery you are reminded of the biggest "What If" of all. What if I don't make it through this surgery? And that is one "What If" I struggle with. So my roller coaster of emotions starts again.
Most of the time I am my normal self. So if you catch me on a ride just bare with me. If you are reading this and have already witnessed me on one of my rides thank you. Thank you for understanding. Thank you for being a shoulder to cry on. Thank you for giving me strength. I am finding some sort of weird strength in writing these notes. Maybe it is because I am acknowledging that I am afraid or maybe it is because in my own little way I am flipping off my fear and not letting it control me (most of the time). I don't know but either way I will get through this because I am a damn princess and that is what princess' do! ;o)
Holy Freak Out Batman...Brain Surgery in 2 Weeks!
How am I doing? Ha! Well I will start by saying that I am fine. No really, I am. That is my standard answer. That is what I tell 98% of the people that ask that question. I have found over the last few weeks that I am not so good at telling people how I feel. Which is surprising because just ask anybody and it is usually getting me to shut up that is the challenge! Maybe it is because I don't want them to worry about me. I want so badly to be the normal happy go lucky Amy that I have always been, to be the positive one that everyone is used to. Maybe it is because I know once I start to open up the tears come and once I start I cannot seem to stop. Maybe it is because I don't want to complain. I don't want to be the downer that is always complaining about poor me. Or maybe it is just because I don't always know how I am doing. Either way I cannot seem to be honest with people. So when I say that I am fine, just smile and silently know that I am not fine but that I will get better.
Truth is each day that passes seems to get harder and harder. Fear is a horrible feeling and I am not as good at ignoring that emotion as I used to be. It amazes me how difficult it is to get around right now. I am exhausted. And I don't mean if I take a nap I will be ok, I mean down to my soul exhausted. The fear in my heart is almost paralyzing. I look back to the weeks before this nightmare started and I want to be that girl again. I want to look at life as a gift. I want to be optimistic and happy. I want to love my life and everything in it. I want to be excited to go to work and excited to come home. I don't want to be angry. I don't want to ask myself why me and why now? The person I am right now is not me. Anyone who has known me for even a little bit knows that is not me. I am not an angry person by nature nor am I a person who sits back with self pity. I am surrounded by the love of family and friends. But I feel alone. I want to cry and scream and just wake up from this horrible nightmare!!!
But I can't wake up. I can't wish it away or even pray it away. Because the truth is that I have to deal with this. I have to stay as strong as possible for myself and for my kids. I have to learn that being strong doesn't mean being happy all the time. It means doing the best I can with what I have. And maybe the happiness that I felt right before all this started wasn't meant to tease me. Maybe it was meant to give me something to fight for. Maybe it is suppose to help me get through the recovery because I know what happiness feels like and I am willing to fight to get it back. I can't give up. I won't give up. Even in moments of pure fear I still make it through. I may not be as happy or as optimistic as I want to be right now but at least I am still going. And maybe that is my strength. Maybe Dori was right, "just keep swimming, just keep swimming"! What if strength isn't always about "swimming" with a smile, maybe just the act of "swimming" no matter how badly you want to stop is true sign of strength? I don't know. But for me, these next two weeks are like an evil band-aid. Part of me just wants to rip it off and part of me wants to soak it in water and slowly peel it off.
So I may not be just fine right now. But I will be ok. And after that I will be great! And after that, watch out because I will be back to my normal happy self and you all will be wishing that the hospital staff at Stanford kept me longer! =)
A Few Last Minute Thoughts...
Truth is each day that passes seems to get harder and harder. Fear is a horrible feeling and I am not as good at ignoring that emotion as I used to be. It amazes me how difficult it is to get around right now. I am exhausted. And I don't mean if I take a nap I will be ok, I mean down to my soul exhausted. The fear in my heart is almost paralyzing. I look back to the weeks before this nightmare started and I want to be that girl again. I want to look at life as a gift. I want to be optimistic and happy. I want to love my life and everything in it. I want to be excited to go to work and excited to come home. I don't want to be angry. I don't want to ask myself why me and why now? The person I am right now is not me. Anyone who has known me for even a little bit knows that is not me. I am not an angry person by nature nor am I a person who sits back with self pity. I am surrounded by the love of family and friends. But I feel alone. I want to cry and scream and just wake up from this horrible nightmare!!!
But I can't wake up. I can't wish it away or even pray it away. Because the truth is that I have to deal with this. I have to stay as strong as possible for myself and for my kids. I have to learn that being strong doesn't mean being happy all the time. It means doing the best I can with what I have. And maybe the happiness that I felt right before all this started wasn't meant to tease me. Maybe it was meant to give me something to fight for. Maybe it is suppose to help me get through the recovery because I know what happiness feels like and I am willing to fight to get it back. I can't give up. I won't give up. Even in moments of pure fear I still make it through. I may not be as happy or as optimistic as I want to be right now but at least I am still going. And maybe that is my strength. Maybe Dori was right, "just keep swimming, just keep swimming"! What if strength isn't always about "swimming" with a smile, maybe just the act of "swimming" no matter how badly you want to stop is true sign of strength? I don't know. But for me, these next two weeks are like an evil band-aid. Part of me just wants to rip it off and part of me wants to soak it in water and slowly peel it off.
So I may not be just fine right now. But I will be ok. And after that I will be great! And after that, watch out because I will be back to my normal happy self and you all will be wishing that the hospital staff at Stanford kept me longer! =)
A Few Last Minute Thoughts...
Well the time is almost finally here. I leave tomorrow to head to the place that will change my life. Nobody can say for sure if it will be for the better or for the worse so of course there are a million things running through my mind. I have a few friends on FB that are going through the same thing as me but have not yet heard if they will require the surgery or not. I am not a doctor by any means but I hope these notes help them see a side of this that they might not have had the chance to see. The sad thing about this condition is that sometimes good news is hard to find. There is no cure. There is no magical answer that takes it all away. Even this risky surgery is not an end all. There is no way to tell if it will even work. That is the scary part. I could have this surgery, go through all of the pain and fear that goes along with it, and still get worse. The goal of the surgery is to stop the progression of the symptoms. But reality is that it doesn't always work. Even after this surgery I could get worse. It may not solve the issues and it could continue to wreck havoc on my heart. And sadly, this is what you read about most on the internet. Because most of the people who have the positive stories about how they overcame their obstacles, move on. They simply disapear off the Chiari message boards. They move on with their lives and never look back. So the good news is sometimes hard to find. But it is out there. I have had the pleasure of meeting two people on here who are the good news stories. They have had the surgery, and while they are not 100% they are living their lives the best they can. Those are the people I want to surround myself with. The people who run marathons within a year of this surgery, the people who go back to work and feel better than ever. That is what I want. I want to be the one that not only survived brain surgery, but kicked so much ass that I surprise everyone. So that is my hope. That is my goal. I will beat this and I will look back with a smile and know that all of the fears and worries were for nothing. But for now the fear is still there.
I have said this before, but the fear is paralyzing. It strikes at random times. I have noticed that the longer I try to keep it at bay the harder it hits when it finally does hit. I find myself staring off into space a lot more than normal (which was already a lot for this blonde chick lol). Yesterday was one of the best days I have ever had. I was kidnapped by Jason from work (against my will of course) and forced to eat Sushi at my favorite sushi resturaunt, hiked through the Sequoia's, sat for what seemed like hours watching the river flow and then had dinner at my beloved Thai resturaunt. Seriously, how spoiled can I get!?! But as great as it was I was scared. There were times that I didn't even hear a question. I was so lost in my own head that I didn't even know I was being spoken to. The thoughts are random. Even for me they are random. They are a mixture of "What if" and "Why me". Even great days like yesterday have a dark shadow around them. But I will survive. I will wake up from this surgery better than ever. So I have to trust the doctors. I have to trust that they will take care of me. I have to trust that God's will is being done. So I take comfort in that.
"What would you say?". That is the question of the day. No matter how hard I try, the thought of not coming home haunts me. I look around at the people in my life and I just want to scream. I want to tell them how important they are. How much they mean to me. I want to tell them to let go of the stupid stuff. To live each day better than the last. To let go of petty emotions and enjoy themselves. I want to tell them to stop getting in their own way and live their life. Its a mixture of great love for them and anger at the same time. I sometimes wish people could live one day like this. One day in my shoes wondering if you will go into surgery and never wake up. Not because I am mean but because it gives you a little different perspective. Suddenly, the little petty things don't matter. It doesn't matter what you have or what people think. The only thing that matters is love. What you gave and the people you shared your life with. If something happened to me what would people remember? What would be my legacy? Maybe if I had seen this perspective earlier in my life I could have done more. I could have given more of myself to others. I could have made it a bigger priority in my life to make a difference. I would have played with my children more, loved deeper and laughed about the petty stuff. I would have made sure that everyone in my life knew how important they were. That is what I would say. I wouldn't have waited to tell people how I felt. Because the reality is nobody is gauranteed tomorrow. We only have today. So LIVE it! Love it! Say what you feel. Take the trips you have always wanted to take. Tell the people who matter in your life how you feel. Love deeper and don't hold back. So my question to you is, what would you do? Where would you go? And most importantly, what would you say to the people in your life? Think about that for a minute and DO IT!!!
Fear is also a great motivator. It motivates me to get better. It drives me to overcome this. Because I am not done living this life. I am not done making my mark on this Earth. I am not done being obnoxious! I have so many things that I want to do. And I will get the chance to do them. So take this lesson from me. Don't wait. Don't assume you will have time to do the things you want to do.
So those are a few notes I wrote prior to my surgery. The last one is the hardest. To say the days and weeks that followed were not easy is an understatement. But, I am here. I am alive and nearly 2 years later still fighting like a girl! Chiari may be a part of me now but it will not win. Everyday I have hope. And with that hope I find the strength to keep fighting.
I have said this before, but the fear is paralyzing. It strikes at random times. I have noticed that the longer I try to keep it at bay the harder it hits when it finally does hit. I find myself staring off into space a lot more than normal (which was already a lot for this blonde chick lol). Yesterday was one of the best days I have ever had. I was kidnapped by Jason from work (against my will of course) and forced to eat Sushi at my favorite sushi resturaunt, hiked through the Sequoia's, sat for what seemed like hours watching the river flow and then had dinner at my beloved Thai resturaunt. Seriously, how spoiled can I get!?! But as great as it was I was scared. There were times that I didn't even hear a question. I was so lost in my own head that I didn't even know I was being spoken to. The thoughts are random. Even for me they are random. They are a mixture of "What if" and "Why me". Even great days like yesterday have a dark shadow around them. But I will survive. I will wake up from this surgery better than ever. So I have to trust the doctors. I have to trust that they will take care of me. I have to trust that God's will is being done. So I take comfort in that.
"What would you say?". That is the question of the day. No matter how hard I try, the thought of not coming home haunts me. I look around at the people in my life and I just want to scream. I want to tell them how important they are. How much they mean to me. I want to tell them to let go of the stupid stuff. To live each day better than the last. To let go of petty emotions and enjoy themselves. I want to tell them to stop getting in their own way and live their life. Its a mixture of great love for them and anger at the same time. I sometimes wish people could live one day like this. One day in my shoes wondering if you will go into surgery and never wake up. Not because I am mean but because it gives you a little different perspective. Suddenly, the little petty things don't matter. It doesn't matter what you have or what people think. The only thing that matters is love. What you gave and the people you shared your life with. If something happened to me what would people remember? What would be my legacy? Maybe if I had seen this perspective earlier in my life I could have done more. I could have given more of myself to others. I could have made it a bigger priority in my life to make a difference. I would have played with my children more, loved deeper and laughed about the petty stuff. I would have made sure that everyone in my life knew how important they were. That is what I would say. I wouldn't have waited to tell people how I felt. Because the reality is nobody is gauranteed tomorrow. We only have today. So LIVE it! Love it! Say what you feel. Take the trips you have always wanted to take. Tell the people who matter in your life how you feel. Love deeper and don't hold back. So my question to you is, what would you do? Where would you go? And most importantly, what would you say to the people in your life? Think about that for a minute and DO IT!!!
Fear is also a great motivator. It motivates me to get better. It drives me to overcome this. Because I am not done living this life. I am not done making my mark on this Earth. I am not done being obnoxious! I have so many things that I want to do. And I will get the chance to do them. So take this lesson from me. Don't wait. Don't assume you will have time to do the things you want to do.
So those are a few notes I wrote prior to my surgery. The last one is the hardest. To say the days and weeks that followed were not easy is an understatement. But, I am here. I am alive and nearly 2 years later still fighting like a girl! Chiari may be a part of me now but it will not win. Everyday I have hope. And with that hope I find the strength to keep fighting.
Tuesday, May 1, 2012
Conquering Chiari One Step at a Time
Chiari. Chiari. Chiari. If you have not yet heard of it, we must have never met. Chiari is my life. No, I don't mean there is nothing else in my life, just that Chiari is a part every aspect of my life. This month has been a roller coaster. And not the super cool roller coasters that I can no longer ride, but a busy whirlwind month. Crystal and I got approval to host our very first Conquer Chiari Walk Across America in Fresno. We are so excited to be able to spread awareness and hopefully help raise some money for the cause. And if you have met me, you know I cannot do anything normal. I will settle for nothing less than going BIG.
Promo video. Yes, a promo video. Like a real video to help people understand the seriousness of the condition and why they should help out. As far as I know, one has never been done. In my many blessings, I have been blessed with some remarkable friends. And these remarkable friends just happen to produce video productions. So I called in a favor and WHA-LA, we shot the video in LA a few weeks ago. It was an amazing day. Not only were we working on a video that could help spread Chiari Awareness, but we got the chance to hang out with fellow big brains! Now, for those who have never faced something like Chiari, or any other disease/condition, you may not fully appreciate what it is like to be in the company of people who know exactly what you are going through. It is inspiring. For one whole day, we didn't feel alone. I have been blessed with some amazing people in my life, but they don't always understand what I face on a daily basis. And to be honest, that is OK. I would never want them to understand because that would mean that they had it. But to be in the company of people who not only understand, but also just shine with positivity is truly an amazing experience.
Newspaper domination. That is my goal, the first of many steps to complete world domination. I met with Tammy again for more articles. She is a local newspaper reporter who has helped cover my story in the past. And boy is she a firecracker! It seems I may have touched her heart because she is now dedicated to helping me spread awareness. What an awesome friend she has become. She is using her voice to help our cause. That is why I try to find the positives when I tell my story. Truth is, people are tired of hearing only negatives. It starts to sound like whining, even though I am guilty of that at times too. But when you are fighting for a cause, your voice needs to have some positives. You have to try to inspire people to want to help. It isn't always easy to find the positives in Chiari. But they are there. And as long as we are constantly looking for them we will continue to have hope. Without hope, Chiari will always win.
Chiari sucks. Some days are better than others. Some days are just plain horrible. Chiari robs you of the ability to be who you want to be and who you once were. It is easy to fall into the "poor me" trap. I must admit, I do that from time to time as well. But when you surround yourself with people who exude positivity, your life is enhanced. I have seen the suffering that Chiari can bring. I know so many people people who have faced multiple surgeries with no real improvement. And it is hard. But on the days where the pain is too much, or the uncertainty of the future starts to weigh on my heart, that is when I reach out. To the ones who will lift me up instead of helping me to feel sorry for myself. To the ones who find the wins in the smaller battles. Chiari may have the upper hand in this war but if we can find hope in the smaller wins, we will always keep fighting.
The following pictures are pictures of my team shirts from last year. Going to rock them again this year!
Promo video. Yes, a promo video. Like a real video to help people understand the seriousness of the condition and why they should help out. As far as I know, one has never been done. In my many blessings, I have been blessed with some remarkable friends. And these remarkable friends just happen to produce video productions. So I called in a favor and WHA-LA, we shot the video in LA a few weeks ago. It was an amazing day. Not only were we working on a video that could help spread Chiari Awareness, but we got the chance to hang out with fellow big brains! Now, for those who have never faced something like Chiari, or any other disease/condition, you may not fully appreciate what it is like to be in the company of people who know exactly what you are going through. It is inspiring. For one whole day, we didn't feel alone. I have been blessed with some amazing people in my life, but they don't always understand what I face on a daily basis. And to be honest, that is OK. I would never want them to understand because that would mean that they had it. But to be in the company of people who not only understand, but also just shine with positivity is truly an amazing experience.
Newspaper domination. That is my goal, the first of many steps to complete world domination. I met with Tammy again for more articles. She is a local newspaper reporter who has helped cover my story in the past. And boy is she a firecracker! It seems I may have touched her heart because she is now dedicated to helping me spread awareness. What an awesome friend she has become. She is using her voice to help our cause. That is why I try to find the positives when I tell my story. Truth is, people are tired of hearing only negatives. It starts to sound like whining, even though I am guilty of that at times too. But when you are fighting for a cause, your voice needs to have some positives. You have to try to inspire people to want to help. It isn't always easy to find the positives in Chiari. But they are there. And as long as we are constantly looking for them we will continue to have hope. Without hope, Chiari will always win.
Chiari sucks. Some days are better than others. Some days are just plain horrible. Chiari robs you of the ability to be who you want to be and who you once were. It is easy to fall into the "poor me" trap. I must admit, I do that from time to time as well. But when you surround yourself with people who exude positivity, your life is enhanced. I have seen the suffering that Chiari can bring. I know so many people people who have faced multiple surgeries with no real improvement. And it is hard. But on the days where the pain is too much, or the uncertainty of the future starts to weigh on my heart, that is when I reach out. To the ones who will lift me up instead of helping me to feel sorry for myself. To the ones who find the wins in the smaller battles. Chiari may have the upper hand in this war but if we can find hope in the smaller wins, we will always keep fighting.
The following pictures are pictures of my team shirts from last year. Going to rock them again this year!
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