A common question, we ask it a hundred times a week, we get asked it back a hundred times in return. Most of us don't think much about the reply, "good, you?" "fine, thanks", answers like these are all answers that just seem to roll of our tongues. However, you ask someone who has a Chiari Malformation about how they are you're likely to get one of two answers....a candy coated fib "I'm doing ok, thanks" or something a little more truthful like "completely shitty, but thanks for asking." To a Chiarian, asking "how are you?" is like opening up a can of worms in the nest of brand new baby birds and their mamma....it's going to be messy.
So many people want to know what it's like to be a Chiarian. Well, to be frank, it sucks major ass. While eventually you find yourself in contact with fellow Chiarian's who can understand what you are going through, it in no way puts you in some fancy-shmancy exclusive club. It just helps you find more support and relate to others like you. But even with those people you still feel completely alone with this horrible, God-awful illness that is absolutely invisible to the rest of the world except of course for the enormous scar that looks like a zipper that runs from the middle of your skull to the base of your neck and then some. People look at you as if you are lazy. Doctors call you "crazy" tell you it's all in your head, until of course they actually take a closer look and physically see that yes, it is in your head, except all the parts that should be in your head, are not. That's the problem. It's an illness that is both debilitating, frustrating, and can be fatal. Yet to some, it is easy to look the other way because those who suffer must be faking because we don't "look sick."
There are so many horrible diseases out there, not one is any better than the other. They all suck. I wouldn't wish any of them on my worst enemy. Some of them your body tries to fend off with white blood cells or your immune system will attempt to kick in, in some way. With Chiari you are literally fighting a war against your own body, against your brain, the very thing that controls your body functions. It literally seems impossible to win. Every time a new symptom comes up you wonder will this be the one that will lead to something I cannot beat? Will this be the one that kills me? I cannot tell you how many purple candles I've seen go up, how many angels gained their wings, some too little, too young, that should never have had to deal with this sort of thing ever, but especially not this young. This disease, much like all the rest, just sucks. Did I mention that?
As a Chiarian, especially as a woman, I worry that I've passed this ridiculous disease onto my children. I pray every single night that I did not pass this onto my babies. I will take everything this horrible disease has to offer, everything every horrible disease has to offer as long as my children do not have to suffer one moment of any of this nonsense. It's one thing to know that you have to undergo these surgeries, that your doctors will literally be poking around in your brain multiple times in your life, that other parts of your body will be affected by this damn disease, that you could develop other diseases thanks to this one. The last thing you ever want is to think your children would ever have to face the same thing.
It's bad enough that thanks to this suck-ass disease you no longer can play like you used to, you have no energy, your body, no matter what it's age is actually acting more like someone 20-30 yrs older than you. Your memory sucks, your attitude sucks and of course your "get up and go" is now "get up and sit." Having children young was our plan so we could grow up with them...be able to play with them, run with them, go on vacations and act like children right along side them. Thank you Chiari for ruining that plan. To see the look on my children's faces when they ask me to play and I physically can't move because my migraine is so bad, or because the pressure in my back/neck is just too much, or because my tailbone popped back out of place, they don't need excuses...they need their mom back. I need my body back. Doing the surgeries didn't give me symptom relief, just made new ones and now I'm facing more....and I just can't do that again. I just want to be with my children.
So, how am I? I suck. Chiari sucks, I am not lazy, my house is cluttered with toys but it's clean. I am not crazy and I am "sick in the head" my brain is "leaking" out of my skull. I don't feel good, but I'm not contagious. I'm not in shape, but I can't work out, I will literally break my ass. So to judge me just sucks. Walk around in my shoes for a while and then pass judgement.
So to sum up, I really had two reasons for writing this blog. One, I just needed an outlet. Some of it may seem a bit sappy or whiny and for that well I'm sorry. Actually, I'm not because I don't ever talk about this with anyone and this is my outlet so I'm sorry I'm not sorry. I'm having a bad night and had no one to talk to. So if you're reading this, you're now my therapist. Congratulations and I'm not paying you.
The second reason was because I would really love it if the next time you see someone who is walking around with purple hair, dressed in nothing but comfortable clothes, talking to you about how they aren't feeling well, or the next time you see someone park in a handicapped parking spot (as long as they have a sticker) and they may look young or may look like nothing is wrong with them...give them the benefit of the doubt. You don't know what someone else is going through, what they may be struggling with or what disease or illness they may or may not have. Perhaps they are showing support for someone else.... Instead of judging, maybe ask them if you can help them. You wouldn't believe how much a simple smile or nice gesture can make someone's day instead of a snicker or snarky attitude. I am guilty of it myself....I've judged others in the past as well...but now I simply ask "how are you?"
Showing posts with label Chiari Malformation. Show all posts
Showing posts with label Chiari Malformation. Show all posts
Friday, April 29, 2016
Tuesday, January 6, 2015
New Year, New Outlook
I'm not one to make resolutions per say, but this year I decided to get that "fresh perspective" on myself, so I really started to look at things in my life. I realized that a core problem I have is following through with things. It's always been a problem area for me and I know it's not something that's going to change overnight, but I'm really going to make it a goal for myself to be better at following through on things.
So, that being said, I've told my story of having Chiari Malformation and frankly I'm sick of it. The whole damn thing. I've met some awesome people who also have it, and unfortunately there just isn't a whole lot of light shed on it in this area. It seems that the only people who know about it are the people who have it, and when they're diagnosed they have no idea what it is. They're only taught what their particular doctor tells them which is usually very little because not many physician's specialize in this particular disease.
There is a Chiari Institute which is where the experts are, but it's in Great Neck, NY so if you're not living close to it, or have an insurance that will cover your cost of going there, your pretty much out of luck.
Fortunately, there is a whole other world out there of "Chiarian's" which is what people who suffer from Chiari Malformation affectionately call themselves. There are a ton of support groups out there both online and some in person, but it varies by area.
Last year, I was lucky enough to be able to set one up in my area and I'm so excited to say that we have 26 members which is a lot in my eyes considering I was diagnosed 8 years ago and I met my first fellow Chiarian last year. Now I have met literally hundreds online and a handful of wonderful people face to face, and it has made a world of difference.
I see Chiari in a whole new way, and 2015 is going to be a banner year, I am making sure of that. I am hoping to get Chiari awareness spread all over my area so that when people ask "what is Chiari?" a fellow Chiarian may not have to answer, but a supporter may be able to. Chiari is a debilitating disease, and there is no cure, except surgery, and that in itself really isn't a cure, it may help with the symptoms, but brain surgery is a pretty drastic measure to alleviate symptoms if you ask me. Not all Chiari's are operable, and some Chiari's can be fatal. Certain types are fatal, no question about it.
Chiari has a no outside look to it. No one looks different on the outside unless the surgery was done in which case all anyone can see is a scar. Often times it will resemble a zipper from the base of the neck up to the middle of the skull and then the "Chiarian" is now called a "Zipperhead" nice aren't we?! Brain surgery is rough. It hurts, it's so scary, and the possibilities of errors and infections are endless.
However, Chiari is not recognized in NY state nor is it considered "disabling" so sometimes it's damn near impossible to get disability unless you have every doctor, lawyer, judge, witness, etc. on board and even then you may get denied. I am hoping that with a lot of support and marketing Chiari awareness all over the place, we can finally get Chiari recognized, but we'll need the numbers.
This is where we need support. Support from fellow Chiarian's, support from our families, friends, co-workers, and communities. Sometimes we just can't function. Sometimes the pain is just too much to bear. But with the support of our loved ones, we can make it through. For 2015 I am challenging people to get educated about this disease, learn how you can help those who have it. While there is no exact number of how many people are diagnosed with Chiari per year, due to more advanced testing, the number of people becoming diagnosed with Chiari has been rising every year. Numbers are estimating between 300,000 to 500,000 per year. Empower yourself with knowledge about Chiari. Help yourself, help others. Get a new outlook for 2015, get a new perspective. Thank you for reading. <3
Have a Healthy 2015!
So, that being said, I've told my story of having Chiari Malformation and frankly I'm sick of it. The whole damn thing. I've met some awesome people who also have it, and unfortunately there just isn't a whole lot of light shed on it in this area. It seems that the only people who know about it are the people who have it, and when they're diagnosed they have no idea what it is. They're only taught what their particular doctor tells them which is usually very little because not many physician's specialize in this particular disease.
There is a Chiari Institute which is where the experts are, but it's in Great Neck, NY so if you're not living close to it, or have an insurance that will cover your cost of going there, your pretty much out of luck.
Fortunately, there is a whole other world out there of "Chiarian's" which is what people who suffer from Chiari Malformation affectionately call themselves. There are a ton of support groups out there both online and some in person, but it varies by area.
Last year, I was lucky enough to be able to set one up in my area and I'm so excited to say that we have 26 members which is a lot in my eyes considering I was diagnosed 8 years ago and I met my first fellow Chiarian last year. Now I have met literally hundreds online and a handful of wonderful people face to face, and it has made a world of difference.
I see Chiari in a whole new way, and 2015 is going to be a banner year, I am making sure of that. I am hoping to get Chiari awareness spread all over my area so that when people ask "what is Chiari?" a fellow Chiarian may not have to answer, but a supporter may be able to. Chiari is a debilitating disease, and there is no cure, except surgery, and that in itself really isn't a cure, it may help with the symptoms, but brain surgery is a pretty drastic measure to alleviate symptoms if you ask me. Not all Chiari's are operable, and some Chiari's can be fatal. Certain types are fatal, no question about it.
Chiari has a no outside look to it. No one looks different on the outside unless the surgery was done in which case all anyone can see is a scar. Often times it will resemble a zipper from the base of the neck up to the middle of the skull and then the "Chiarian" is now called a "Zipperhead" nice aren't we?! Brain surgery is rough. It hurts, it's so scary, and the possibilities of errors and infections are endless.
However, Chiari is not recognized in NY state nor is it considered "disabling" so sometimes it's damn near impossible to get disability unless you have every doctor, lawyer, judge, witness, etc. on board and even then you may get denied. I am hoping that with a lot of support and marketing Chiari awareness all over the place, we can finally get Chiari recognized, but we'll need the numbers.
This is where we need support. Support from fellow Chiarian's, support from our families, friends, co-workers, and communities. Sometimes we just can't function. Sometimes the pain is just too much to bear. But with the support of our loved ones, we can make it through. For 2015 I am challenging people to get educated about this disease, learn how you can help those who have it. While there is no exact number of how many people are diagnosed with Chiari per year, due to more advanced testing, the number of people becoming diagnosed with Chiari has been rising every year. Numbers are estimating between 300,000 to 500,000 per year. Empower yourself with knowledge about Chiari. Help yourself, help others. Get a new outlook for 2015, get a new perspective. Thank you for reading. <3
Have a Healthy 2015!
Tuesday, July 15, 2014
The power of chiari....
It's been a while since I've written about my chiari, but I get compliments all the time from people when I do or when I listen to other's stories. So I am writing this for those who have struggled, who are struggling, those who are helping someone overcome their chiari, and everyone in between.
First off, you'll notice that I am not capitalizing the word chiari, being that it is a proper name, it should be according to the "rules" of the Enlgish language. I however no longer am giving this horrible disease that much distinction or power. A small and somewhat meaningless action to those who have not suffered from this disease, but if you have, just taking away a smidgen of it's power is worth a celebration.
After I was diagnosed with chiari malformation in 2006 I didn't really think about the toll it would take on my life as I grew older. Now that I have two small children and have put my body through so much over the last 8 years it has definitely taken quite a chunk out of what was supposed to be the "best" years of my life.
I am supposed to be able to run around (and keep up with) my children. I am supposed to be able to hike up mountains with my family, to go on adventure walks with other young couples and their kids. I am supposed to be able to keep up with other people my age and not be drained after trying to clean up my house after my kids.
I am not lazy, I am not having a pity party, but I am also a realist. I know I am not able to do the things I want to do and it, to be blunt, sucks. It sucks a lot. And some days I have myself a little breakdown and a cry fest on my couch apologizing to my kids for being in pain and unable to do the things with them I know they want to do. Some days are better and I am up moving around a lot better and I can manage the pain a little better and we have a lot more fun on those days obviously.
So, yes I have bad days, yes I have good days. I take care of my children with all the love and support I can give them and I will always push myself to be the very best for them. I will never be the person I used to be and that just is what it is. I have to learn how to forgive myself for that. The question is how? Here's a start:
This year I started a CNY chapter for Chiari and EDS sufferers because I feel the best thing we can do is support each other. I have watched so many purple candles light up Facebook recently and it just breaks my heart each time. The lit purple candles represent a Chiarian who has lost his/her battle with chiari. Wether you know the person who passed on personally or not, the common bond of knowing how bad he or she suffered and knowing the amount of fight he or she had to do..... it's wrenching to know that he or she lost the battle, the only comfort is knowing that the pain is over.
The power of chiari is immeasureable. It takes away so much from those it affects. Once you are diagnosed, the life you once knew is completely flipped upside down and it will never be the same. All of the sudden everyone is looking at you different, everyone needs to be tested, people want to start poking you with all sorts of needles, doctors want to touch your brain for Pete's sake!
However, with the power of chiari comes a whole new wave of support from people just like you. They know exactly what you're going through and they will help you through everything you are going through every step of the way. You are not alone. The best thing we can do for one another is support each other. We need to get the awareness out to our communities and let those who are silently suffering know that we are here for one another. We need to show our physician's that we need the support from them as well. We aren't just a name/number on a chart. We are real people with a real disease and just because we may not LOOK sick on the outside, our pain and suffering is very much real.
The pain, sadness, hurt and anger will always come and go. It is something that will never go away. I will not say that I don't face those demons every single day. However, I will not give my chiari any more power over me than it already has. I am taking back my life and using the negative from it and turning it into something positive. If you are suffering from it or know someone who is, please know, you are NOT alone.
First off, you'll notice that I am not capitalizing the word chiari, being that it is a proper name, it should be according to the "rules" of the Enlgish language. I however no longer am giving this horrible disease that much distinction or power. A small and somewhat meaningless action to those who have not suffered from this disease, but if you have, just taking away a smidgen of it's power is worth a celebration.
After I was diagnosed with chiari malformation in 2006 I didn't really think about the toll it would take on my life as I grew older. Now that I have two small children and have put my body through so much over the last 8 years it has definitely taken quite a chunk out of what was supposed to be the "best" years of my life.
I am supposed to be able to run around (and keep up with) my children. I am supposed to be able to hike up mountains with my family, to go on adventure walks with other young couples and their kids. I am supposed to be able to keep up with other people my age and not be drained after trying to clean up my house after my kids.
I am not lazy, I am not having a pity party, but I am also a realist. I know I am not able to do the things I want to do and it, to be blunt, sucks. It sucks a lot. And some days I have myself a little breakdown and a cry fest on my couch apologizing to my kids for being in pain and unable to do the things with them I know they want to do. Some days are better and I am up moving around a lot better and I can manage the pain a little better and we have a lot more fun on those days obviously.
So, yes I have bad days, yes I have good days. I take care of my children with all the love and support I can give them and I will always push myself to be the very best for them. I will never be the person I used to be and that just is what it is. I have to learn how to forgive myself for that. The question is how? Here's a start:
This year I started a CNY chapter for Chiari and EDS sufferers because I feel the best thing we can do is support each other. I have watched so many purple candles light up Facebook recently and it just breaks my heart each time. The lit purple candles represent a Chiarian who has lost his/her battle with chiari. Wether you know the person who passed on personally or not, the common bond of knowing how bad he or she suffered and knowing the amount of fight he or she had to do..... it's wrenching to know that he or she lost the battle, the only comfort is knowing that the pain is over.
The power of chiari is immeasureable. It takes away so much from those it affects. Once you are diagnosed, the life you once knew is completely flipped upside down and it will never be the same. All of the sudden everyone is looking at you different, everyone needs to be tested, people want to start poking you with all sorts of needles, doctors want to touch your brain for Pete's sake!
However, with the power of chiari comes a whole new wave of support from people just like you. They know exactly what you're going through and they will help you through everything you are going through every step of the way. You are not alone. The best thing we can do for one another is support each other. We need to get the awareness out to our communities and let those who are silently suffering know that we are here for one another. We need to show our physician's that we need the support from them as well. We aren't just a name/number on a chart. We are real people with a real disease and just because we may not LOOK sick on the outside, our pain and suffering is very much real.
The pain, sadness, hurt and anger will always come and go. It is something that will never go away. I will not say that I don't face those demons every single day. However, I will not give my chiari any more power over me than it already has. I am taking back my life and using the negative from it and turning it into something positive. If you are suffering from it or know someone who is, please know, you are NOT alone.
Saturday, January 11, 2014
Chiari Malformation - Dealing with the pain
As most who read my blogs know I was diagnosed with a Chiari Malformation in 2006, I had the decompression surgery in 2012 and although the surgery itself was a success as time presses on my symptoms have been coming back as many "Chiarians" as we are affectionately called have experienced, except once the surgery is done the symptoms come back stronger. Fantastic.
So if you have a Chiari you know the pain I am talking about, if not well you will not fully comprehend the pain because it really cannot be described. It's a pressure like no other, a migraine times a thousand, your brain feels like it's on fire, your neck is always in a knot and your spine is always out of alignment and that is on a good day.
It sounds a lot like I'm whining and perhaps I am a bit so I apologize for that. Moving on. I have joined a bunch of online forums and online community support groups and I cannot believe how similar the stories are and how much support I feel and how I feel I can support others. So many men and women who haven't had their surgeries yet and are so scared to do so. I think back to mine and remember feeling the terror, wondering if I would survive at all, worrying about CSF leaks, all the details....it was so overwhelming.
Now listening to these people I can share my story and actually help to calm them. What to bring to the hospital what not to worry about. I know that down the road I'll need another surgery so I ask what to so with the second and third one and how these people handled theirs. A terrifying thought but none-the-less things I need to ask.
Of course every now and then someone puts up a picture of a lit purple candle to signify someone lost their battle with Chiari. Although this disease does not have the mortality rate as some other diseases it can take your life just as quickly. It's a harsh reminder of the reality that is only skin deep.
Not every post on these forums are sad or scary. Some are happy and light. One woman posted how she wasn't a "zipperhead" as we are also called because the scar looks like a zipper on the back of your neck if staples are used but in her case her surgeon used glue and dissolving stitches. I'm excited because it's been a year and a half and my once completely half shaven bald head is now fully grown in and the same length. My hair dresser just cut it yesterday and for the first time since I had the surgery she didn't have to get out the buzzers or put the other half of my hair up and she said it's finally grown in. I realize it sounds petty and vain to some people but to walk around for a year with people staring at you wondering what disease you have really eats at your self esteem. So small victories.
Now it's dealing with the pain. The constant migraines, neck pain, back pain, vision changes, balance changes, medication changes and all the fun crap that goes along with Chiari that was supposed to be gone for a while but now is back with a vengeance. Am I going to bitch about it? Probably, a little bit. Am I going to break down and cry? Occasionally. Will I curl up in a ball and ask why me? Once or twice I'm sure. But will I get up and keep going? You bet your ass I will. I kicked it's ass once, I'll do it again.
So to all my fellow Chiarians out there, it sucks a lot to have it, it sucks even more to deal with the pain, but we are strong, we are fighters and we can beat it. My advice is to join some online communities if you haven't already, get involved if you have a support group locally. If you haven't looked into a Neurosurgeon already, get all the facts and get at least 2 opinions on your case. It's a hefty decision and you should have all the facts. Best of luck! <3
So if you have a Chiari you know the pain I am talking about, if not well you will not fully comprehend the pain because it really cannot be described. It's a pressure like no other, a migraine times a thousand, your brain feels like it's on fire, your neck is always in a knot and your spine is always out of alignment and that is on a good day.
It sounds a lot like I'm whining and perhaps I am a bit so I apologize for that. Moving on. I have joined a bunch of online forums and online community support groups and I cannot believe how similar the stories are and how much support I feel and how I feel I can support others. So many men and women who haven't had their surgeries yet and are so scared to do so. I think back to mine and remember feeling the terror, wondering if I would survive at all, worrying about CSF leaks, all the details....it was so overwhelming.
Now listening to these people I can share my story and actually help to calm them. What to bring to the hospital what not to worry about. I know that down the road I'll need another surgery so I ask what to so with the second and third one and how these people handled theirs. A terrifying thought but none-the-less things I need to ask.
Of course every now and then someone puts up a picture of a lit purple candle to signify someone lost their battle with Chiari. Although this disease does not have the mortality rate as some other diseases it can take your life just as quickly. It's a harsh reminder of the reality that is only skin deep.
Not every post on these forums are sad or scary. Some are happy and light. One woman posted how she wasn't a "zipperhead" as we are also called because the scar looks like a zipper on the back of your neck if staples are used but in her case her surgeon used glue and dissolving stitches. I'm excited because it's been a year and a half and my once completely half shaven bald head is now fully grown in and the same length. My hair dresser just cut it yesterday and for the first time since I had the surgery she didn't have to get out the buzzers or put the other half of my hair up and she said it's finally grown in. I realize it sounds petty and vain to some people but to walk around for a year with people staring at you wondering what disease you have really eats at your self esteem. So small victories.
Now it's dealing with the pain. The constant migraines, neck pain, back pain, vision changes, balance changes, medication changes and all the fun crap that goes along with Chiari that was supposed to be gone for a while but now is back with a vengeance. Am I going to bitch about it? Probably, a little bit. Am I going to break down and cry? Occasionally. Will I curl up in a ball and ask why me? Once or twice I'm sure. But will I get up and keep going? You bet your ass I will. I kicked it's ass once, I'll do it again.
So to all my fellow Chiarians out there, it sucks a lot to have it, it sucks even more to deal with the pain, but we are strong, we are fighters and we can beat it. My advice is to join some online communities if you haven't already, get involved if you have a support group locally. If you haven't looked into a Neurosurgeon already, get all the facts and get at least 2 opinions on your case. It's a hefty decision and you should have all the facts. Best of luck! <3
Monday, September 2, 2013
Inspirations
Tonight I was online with my fellow "Chiarians" and I was reading some of their stories and I have to say some of these people are truly amazing. We've all had some really craptastical things happen in our lives and each and every one of them changes who we are as people. Some people think that other people's situations are worse than ones they may have gone through but it doesn't make what they have gone through or what they may be going through any less important (stole that line from my bestie and she's right by the way).
A lot of my friends often ask me how I make it through the shit I have gone through and the shit I am going through with the attitude I have. It's not something I can explain. It's just something we all have to do. This is the hand I was dealt, and now I have to run with it. It's not like I can hide from it.
A few people have told me I have inspired them, which absolutely made my day but shocked me too because I am not the person who usually inspires people. I'm the loud mouth in the back of the room telling everyone else to shut up or the reason everyone in the group got in trouble cause it was all "my idea"...you see where I'm going.
If I can help someone do something good, that is awesome and I'm so happy to do so, but it's not something I thought I was doing by sharing my experiences. I have come to realize though since joining this online support group for other people who have the same ailment I do, they have inspired me to not only help other's whenever possible but also that by sharing all the positives and negatives it really does help others. Just letting someone else know they are not alone is worth so much to someone who is suffering on the inside.
There is one story in particular that has really struck a cord with me and this poor woman has gone through so much and her recovery has been just awful. She has had CSF leak, after leak, after leak which is not a good thing. Her dr. has had to go back into her incision 3 times and so obviously this poor woman has gone through a lot. But she has the most upbeat attitude about life. Her symptoms are still there, her surgeries are terrible and the recovery sucks but she is funny, down to earth and just a joy to talk to. I'm sure she has her down in the dumps moments but she doesn't show them in the group. She is just happy to be here and be as close to her "normal" as possible. That is inspiring.
It's people like her and stories like that, that make everything else seem so trivial. I think that's why it's easier to look at other situations in life and just walk away. If it isn't THAT important I'm not wasting my time. I want to enjoy my time. I want to enjoy my children and my husband. I want them to know that even though times can get hard, there are always silver linings, and brighter days. If we're still breathing, it's a good day.
Maybe to some this may be cheesy but I really don't care. When you're faced with the idea that you may not be around very long you take any chance you can to make your imprint. I know I'm making mine. I want to inspire my kids to be the very best they can be and to inspire others to do the same. I want the world to know that if you are suffering from anything, don't hide it because just by talking about it you could inspire someone else.
The stories I have read with these "Chiarians" are truly amazing. Some are good and some not so much. Some are very sad and some are oddly familiar. But they all have one thing in common, they all are inspiring.
A lot of my friends often ask me how I make it through the shit I have gone through and the shit I am going through with the attitude I have. It's not something I can explain. It's just something we all have to do. This is the hand I was dealt, and now I have to run with it. It's not like I can hide from it.
A few people have told me I have inspired them, which absolutely made my day but shocked me too because I am not the person who usually inspires people. I'm the loud mouth in the back of the room telling everyone else to shut up or the reason everyone in the group got in trouble cause it was all "my idea"...you see where I'm going.
If I can help someone do something good, that is awesome and I'm so happy to do so, but it's not something I thought I was doing by sharing my experiences. I have come to realize though since joining this online support group for other people who have the same ailment I do, they have inspired me to not only help other's whenever possible but also that by sharing all the positives and negatives it really does help others. Just letting someone else know they are not alone is worth so much to someone who is suffering on the inside.
There is one story in particular that has really struck a cord with me and this poor woman has gone through so much and her recovery has been just awful. She has had CSF leak, after leak, after leak which is not a good thing. Her dr. has had to go back into her incision 3 times and so obviously this poor woman has gone through a lot. But she has the most upbeat attitude about life. Her symptoms are still there, her surgeries are terrible and the recovery sucks but she is funny, down to earth and just a joy to talk to. I'm sure she has her down in the dumps moments but she doesn't show them in the group. She is just happy to be here and be as close to her "normal" as possible. That is inspiring.
It's people like her and stories like that, that make everything else seem so trivial. I think that's why it's easier to look at other situations in life and just walk away. If it isn't THAT important I'm not wasting my time. I want to enjoy my time. I want to enjoy my children and my husband. I want them to know that even though times can get hard, there are always silver linings, and brighter days. If we're still breathing, it's a good day.
Maybe to some this may be cheesy but I really don't care. When you're faced with the idea that you may not be around very long you take any chance you can to make your imprint. I know I'm making mine. I want to inspire my kids to be the very best they can be and to inspire others to do the same. I want the world to know that if you are suffering from anything, don't hide it because just by talking about it you could inspire someone else.
The stories I have read with these "Chiarians" are truly amazing. Some are good and some not so much. Some are very sad and some are oddly familiar. But they all have one thing in common, they all are inspiring.
Tuesday, June 11, 2013
Inked for Awareness
Tomorrow is sort of a special day for me not one anyone would really think of and many are probably tired of hearing about this so if you are, plain and simple don't read on. On Saturday June 15, 2013 it will mark the one year anniversary of my brain surgery to help decompress my Chiari Malformation (you want the basics of it click here http://www.mayoclinic.com/health/chiari-malformation/DS00839) In a nutshell it's when your brain stem grows longer than it should and grows out of your skull, onto your spinal cord causing all sorts of issues. Obviously the hole between your skull and spinal cord is a very small one so throw some of your brain in there, you got yourself an issue now don't you?!
Tons and tons of people have this disease and tons and tons of people have no idea they have it, they go their whole lives completely oblivious that this is going on and that is fine because for some people it causes no symptoms, no ailments, and has no short or long term affects on their bodies. Some people have minimal malformations that are just a tad longer than they should be and it may cause a headache here or there or throw your ass of balance a little bit, no biggy.
Other people find they have it and it has severe affects on their lives. It can cause all sorts of issues depending on what type you have and how severe it is. I'm not going into that because all it does it scare people. And please if you are one of those people who thinks that you have everything STOP READING and DON'T look this shit up. The "common symptoms" can be related to a whole bunch of shit and I really don't want to be getting hit up with the "do I have it?" questions, cause P.S. and by the way - I'm not a doctor and if I was I sure as shit would not be blogging at 12:53am.
Anyway, my case was different. If you read any of my shit you'll find that the more I post about medical ailments I am never "textbook", I am always that marvel case that needs specialists because they can't figure shit out which I think means my "P.H.D's" don't know S.H.I.T.
So onward - when I was pregnant with my daughter is when they found I had this Chiari and I was told a whole bunch of bad news which will be for another blog for another time. Yadda, yadda couldn't do much while I was preggo so we waited until after I had her. My OBGYN told me not to have any more kids but I don't listen well so I went ahead a few years later and had another one. I almost died having him and no one really knew why but I remember my Dr. asking my mother and husband which one of us they wanted him to save and they both said me and I sat up which was surprising because I was numb from the neck down and asked if I got a say in it and I got an overwhelming "No". To this day I think that's a little screwed up. Anyway both baby and I made it out ok and I'm happy to report we are all doing just fine today (again another blog for another day).
About a year went by and my Dr.'s watched the Chiari as time went on and my symptoms got worse but I was in no rush to have surgery. I saw an M.D. a few hours away for a second opinion and did about 15 MRI's and Flow Studies and made a follow up appointment with my neurologist closer to home. I went to the appointment both kids in tow and she sat my down and said "It's time." Being the ass that I am I was like "Time for what? Time to make the doughnuts? Time for lunch? What?" But she didn't smile, she was genuinely concerned. Apparently by Chiari grew which is highly abnormal and it grew quick and there was a blockage which meant at any given time I could stroke out. With all the issues still stemming from my son's delivery I was at a super high risk to keel over.
I remember I went to my mother's work and went up to her office and collapsed on her floor and sobbed. I wasn't ready. I was only 28. Brain surgery? No fricken way, not this girl. I had 2 babies, what if I died during it? What if I died before it? What if... And like all good mom's do, she held me and calmed me and reassured me that we would get through it.
I called the hubby, told him the grand news and made the appointment with the neurosurgeon. I was put on the rush list and within no time at all I was on the operating table. Oh what a joy. When I woke up I had literally a half shaven head and a vacuum seal over the incision. I remember the nurse in the PACU and I opened my eyes and literally projectile vomited all over her so hard that it bounced off her face and hit the girl across from her. Man to this day I feel bad about that.
I was in the ICU and totally spaced out. Luckily I have awesome family and friends who were there to see me and I just cried. That whole summer is a complete blur. I had so many allergic reactions, and so many bad days, I just blocked it out as much as possible. On the upside once you have a decompression you are affectionately called a "Zipperhead" because the scar looks like a zipper with the incision and the staple marks, but my awesome doc did it differently so mine is smooth and covers well with my hair that is not fully grown in but close. That was the same summer Lady Jackass Gaga decided to shave her head and get a tattoo on it, well guess what chick - I had the hairdo first so there! I had brain surgery, what the hell did you do?!
Anyway the point - tomorrow morning I am getting the Chiari Ribbon with some other designs tattooed on my shoulder for a number of reasons but mainly to show support for awareness and to support myself for making it through this past year. It's been a tough one folks.
Chiari has no cure at this point, and it is passed on from mother to child so it's something I will need to check my children for down the road (please Lord don't let them have it). You cannot catch it, you cannot "grow" it. But you can support those who have it, so please do. If you're brave enough take a look at the pics..beware though they are gross. Thanks for reading.
Day one
Day seven
Day suck
Day sucks more
Tons and tons of people have this disease and tons and tons of people have no idea they have it, they go their whole lives completely oblivious that this is going on and that is fine because for some people it causes no symptoms, no ailments, and has no short or long term affects on their bodies. Some people have minimal malformations that are just a tad longer than they should be and it may cause a headache here or there or throw your ass of balance a little bit, no biggy.
Other people find they have it and it has severe affects on their lives. It can cause all sorts of issues depending on what type you have and how severe it is. I'm not going into that because all it does it scare people. And please if you are one of those people who thinks that you have everything STOP READING and DON'T look this shit up. The "common symptoms" can be related to a whole bunch of shit and I really don't want to be getting hit up with the "do I have it?" questions, cause P.S. and by the way - I'm not a doctor and if I was I sure as shit would not be blogging at 12:53am.
Anyway, my case was different. If you read any of my shit you'll find that the more I post about medical ailments I am never "textbook", I am always that marvel case that needs specialists because they can't figure shit out which I think means my "P.H.D's" don't know S.H.I.T.
So onward - when I was pregnant with my daughter is when they found I had this Chiari and I was told a whole bunch of bad news which will be for another blog for another time. Yadda, yadda couldn't do much while I was preggo so we waited until after I had her. My OBGYN told me not to have any more kids but I don't listen well so I went ahead a few years later and had another one. I almost died having him and no one really knew why but I remember my Dr. asking my mother and husband which one of us they wanted him to save and they both said me and I sat up which was surprising because I was numb from the neck down and asked if I got a say in it and I got an overwhelming "No". To this day I think that's a little screwed up. Anyway both baby and I made it out ok and I'm happy to report we are all doing just fine today (again another blog for another day).
About a year went by and my Dr.'s watched the Chiari as time went on and my symptoms got worse but I was in no rush to have surgery. I saw an M.D. a few hours away for a second opinion and did about 15 MRI's and Flow Studies and made a follow up appointment with my neurologist closer to home. I went to the appointment both kids in tow and she sat my down and said "It's time." Being the ass that I am I was like "Time for what? Time to make the doughnuts? Time for lunch? What?" But she didn't smile, she was genuinely concerned. Apparently by Chiari grew which is highly abnormal and it grew quick and there was a blockage which meant at any given time I could stroke out. With all the issues still stemming from my son's delivery I was at a super high risk to keel over.
I remember I went to my mother's work and went up to her office and collapsed on her floor and sobbed. I wasn't ready. I was only 28. Brain surgery? No fricken way, not this girl. I had 2 babies, what if I died during it? What if I died before it? What if... And like all good mom's do, she held me and calmed me and reassured me that we would get through it.
I called the hubby, told him the grand news and made the appointment with the neurosurgeon. I was put on the rush list and within no time at all I was on the operating table. Oh what a joy. When I woke up I had literally a half shaven head and a vacuum seal over the incision. I remember the nurse in the PACU and I opened my eyes and literally projectile vomited all over her so hard that it bounced off her face and hit the girl across from her. Man to this day I feel bad about that.
I was in the ICU and totally spaced out. Luckily I have awesome family and friends who were there to see me and I just cried. That whole summer is a complete blur. I had so many allergic reactions, and so many bad days, I just blocked it out as much as possible. On the upside once you have a decompression you are affectionately called a "Zipperhead" because the scar looks like a zipper with the incision and the staple marks, but my awesome doc did it differently so mine is smooth and covers well with my hair that is not fully grown in but close. That was the same summer Lady Jackass Gaga decided to shave her head and get a tattoo on it, well guess what chick - I had the hairdo first so there! I had brain surgery, what the hell did you do?!
Anyway the point - tomorrow morning I am getting the Chiari Ribbon with some other designs tattooed on my shoulder for a number of reasons but mainly to show support for awareness and to support myself for making it through this past year. It's been a tough one folks.
Chiari has no cure at this point, and it is passed on from mother to child so it's something I will need to check my children for down the road (please Lord don't let them have it). You cannot catch it, you cannot "grow" it. But you can support those who have it, so please do. If you're brave enough take a look at the pics..beware though they are gross. Thanks for reading.
Day sucks more
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