First off guess what I saw tonight.....take a guess!? :)
... incorrect....no matter what you thought!
I googled something tonight...(imagine!)
I searched for (Basilar Invagination Living with) and guess what I got? About 92,200 results (0.32 seconds)...I did not read them all.. However I saw something VERY cool to me..
On page ONE, result number 7...its THIS blog. How freaking cool is that!?
I am guessing this actually probably part of my problem...that whole unique thing...rare...no one has this...freak of nature...kinda thing. So it makes sense that I would eventually end up at the top of the list since no one really posts about it.
I didn't find any new info out there so don't waste your time reading the other 92,199 results...
So anyway, that's what I saw tonight. I did pick through a few of the results just looking for something new and they just depressed me honestly so I stopped looking. In a nutshell...its rare...no one knows much of anything about it....it sucks...deaths reported...and at that point I'd read enough for the evening.
But things are actually going pretty fantastic for me lately. I can't stress it enough water and posture when you have this. Not that it WILL work for you but it can't hurt...right? Since my last post I have been on a mission to top the vitamin water I posted about last time. I have yet to top it but have noticed an extreme influx of 'hydrating' water on the market lately. Someone is finally figuring this out!...finally! I'm loving all my new choices. After researching I found that Coconut Water is just as hydrating (if not more so) but it tastes like crap unless you drown it in pineapple juice. Skinny water and a brand called WAT-AHH (which has a screaming comic on the bottle and just looks cool)...both are great.
Ahhhhhhhh!..... I will shut up about water now! (for now)
I got a new job....which is also fantastic! They brought in these awesome desks that raise up so you can stand while you work... Guess what that helps with??? Take a guess!?
If you said Rule number one OR posture go get a cookie because you are right. :)
Its great and I have noticed a marked improvement in my lack of feeling like crap at the end of everyday. So, thank you to them if they ever read this...they rock!
It can't be all good news because I don't normally think of my brain stuff unless there is something reminding me of it....so here goes. I HATE winter (or winter like) weather....let me say that again...HATE it!! It seems like my body knows when its October and screws with me straight through to March...My hands and feet stay ice cold the whole time and tonight I had one ice cold hand and the other was burning up....no idea why this happens but its freaky. Its like I have circulation on one side and not the other. I'd love to hear from anyone who has this to know if this is a BI or CI thing or if its a Courtney thing... The cold hands and feet I do think are somehow related but I have not had a BI or CI headache in probably 3 weeks....which also rocks :) Minor headaches here and there I will take happily any day...
So this post is filled with no actual usable information...I apologize :) I did want to close with one thing though...its a downer a little but I'm okay, just deciding I like the whole denial thing at the moment but I wanted to share anyway...
So like tonight I have googled some symptoms of what I have and also tried to find out more on it. Each time I do I read more and more that scares the crap out of me! People posting about surgery, pain, death....and so on.. I can't face it! After 10 minutes of reading I close my computer and go play a mind numbing video game or something.
I feel like I have failed the blog because so many people are out there looking for info because NOTHING is really out there and I haven't been able to add all the research to the blog because I am too afraid to face it... for that I apologize. I know how it feels when you are faced with this and how badly you just want to know what will happen to you or your loved one. But there is one thing I have learned through all this...
NO ONE knows what will happen! I mean noooo one!
I am almost to my 3 year anniversary of my diagnosis and here I am today better then I was then (because I made changes to make it easier). I am still alive and surgery free...I plan on staying that way too! Dr, Oro in CO said he needed me to have the surgery in no less than 6 months...well, hate to disappoint and this helps make my case why I DON'T want to have it.....I am fine! Living to the fullest every day and I don't see an end in sight. (please knock on that wood again!)
Next post I will post about another issue that plagues patients with BI.... Cranial Instability....yep...I have that too...and I haven't posted about it because ts even scarier than the other two. Growing up I can not count the times I heard my head wasn't screwed on straight....seems it was not screwed on at all... :) But I am careful and am extra cautious knowing I am a human version of a bobble head....and I really am doing just fine. Health wise I have friends that have no weird medical issues that are less healthy than me.
In closing, I make no promises to post soon! None what so ever :) But I will try!
Again if you are going through this or have family that are I love hearing from you. If I can pass on any knowledge on things that may make it easier I will. Problem is we are so rare and each so very different there is no telling what will work for one may or may not work for another....Good luck!
I'll add just one teeny little thing....life is best lived with a healthy dose of perspective. Evey day I wake up and I don't know what this day will bring..none of us do... There is at least one moment every day that I actually pray this whole thing doesn't kill me...those moments I realize how damn important it is to give 110% in everything you do...friends, family, relationships, job...whatever....give it your all and when these huge problems come up that stress you out....find your perspective and breathe...most are much smaller than they seem. Life is full of things that don't go as planned but you can't throw up your hands and say I can't or be angry....it won't help. What does help is pushing through to make it better anyway you can and remembering to behave the way you would want to be remembered....tomorrow is not guaranteed for any of us. I do forget....but those daily reminders normally put me back in my place...till I forget again.
Don't sweat the small stuff...and enjoy life and those in it...
Till next time...whenever I forget to procrastinate :)
Courtney
... incorrect....no matter what you thought!
I googled something tonight...(imagine!)
I searched for (Basilar Invagination Living with) and guess what I got? About 92,200 results (0.32 seconds)...I did not read them all.. However I saw something VERY cool to me..
On page ONE, result number 7...its THIS blog. How freaking cool is that!?
I am guessing this actually probably part of my problem...that whole unique thing...rare...no one has this...freak of nature...kinda thing. So it makes sense that I would eventually end up at the top of the list since no one really posts about it.
I didn't find any new info out there so don't waste your time reading the other 92,199 results...
So anyway, that's what I saw tonight. I did pick through a few of the results just looking for something new and they just depressed me honestly so I stopped looking. In a nutshell...its rare...no one knows much of anything about it....it sucks...deaths reported...and at that point I'd read enough for the evening.
But things are actually going pretty fantastic for me lately. I can't stress it enough water and posture when you have this. Not that it WILL work for you but it can't hurt...right? Since my last post I have been on a mission to top the vitamin water I posted about last time. I have yet to top it but have noticed an extreme influx of 'hydrating' water on the market lately. Someone is finally figuring this out!...finally! I'm loving all my new choices. After researching I found that Coconut Water is just as hydrating (if not more so) but it tastes like crap unless you drown it in pineapple juice. Skinny water and a brand called WAT-AHH (which has a screaming comic on the bottle and just looks cool)...both are great.
Ahhhhhhhh!..... I will shut up about water now! (for now)
I got a new job....which is also fantastic! They brought in these awesome desks that raise up so you can stand while you work... Guess what that helps with??? Take a guess!?
If you said Rule number one OR posture go get a cookie because you are right. :)
Its great and I have noticed a marked improvement in my lack of feeling like crap at the end of everyday. So, thank you to them if they ever read this...they rock!
It can't be all good news because I don't normally think of my brain stuff unless there is something reminding me of it....so here goes. I HATE winter (or winter like) weather....let me say that again...HATE it!! It seems like my body knows when its October and screws with me straight through to March...My hands and feet stay ice cold the whole time and tonight I had one ice cold hand and the other was burning up....no idea why this happens but its freaky. Its like I have circulation on one side and not the other. I'd love to hear from anyone who has this to know if this is a BI or CI thing or if its a Courtney thing... The cold hands and feet I do think are somehow related but I have not had a BI or CI headache in probably 3 weeks....which also rocks :) Minor headaches here and there I will take happily any day...
So this post is filled with no actual usable information...I apologize :) I did want to close with one thing though...its a downer a little but I'm okay, just deciding I like the whole denial thing at the moment but I wanted to share anyway...
So like tonight I have googled some symptoms of what I have and also tried to find out more on it. Each time I do I read more and more that scares the crap out of me! People posting about surgery, pain, death....and so on.. I can't face it! After 10 minutes of reading I close my computer and go play a mind numbing video game or something.
I feel like I have failed the blog because so many people are out there looking for info because NOTHING is really out there and I haven't been able to add all the research to the blog because I am too afraid to face it... for that I apologize. I know how it feels when you are faced with this and how badly you just want to know what will happen to you or your loved one. But there is one thing I have learned through all this...
NO ONE knows what will happen! I mean noooo one!
I am almost to my 3 year anniversary of my diagnosis and here I am today better then I was then (because I made changes to make it easier). I am still alive and surgery free...I plan on staying that way too! Dr, Oro in CO said he needed me to have the surgery in no less than 6 months...well, hate to disappoint and this helps make my case why I DON'T want to have it.....I am fine! Living to the fullest every day and I don't see an end in sight. (please knock on that wood again!)
Next post I will post about another issue that plagues patients with BI.... Cranial Instability....yep...I have that too...and I haven't posted about it because ts even scarier than the other two. Growing up I can not count the times I heard my head wasn't screwed on straight....seems it was not screwed on at all... :) But I am careful and am extra cautious knowing I am a human version of a bobble head....and I really am doing just fine. Health wise I have friends that have no weird medical issues that are less healthy than me.
In closing, I make no promises to post soon! None what so ever :) But I will try!
Again if you are going through this or have family that are I love hearing from you. If I can pass on any knowledge on things that may make it easier I will. Problem is we are so rare and each so very different there is no telling what will work for one may or may not work for another....Good luck!
I'll add just one teeny little thing....life is best lived with a healthy dose of perspective. Evey day I wake up and I don't know what this day will bring..none of us do... There is at least one moment every day that I actually pray this whole thing doesn't kill me...those moments I realize how damn important it is to give 110% in everything you do...friends, family, relationships, job...whatever....give it your all and when these huge problems come up that stress you out....find your perspective and breathe...most are much smaller than they seem. Life is full of things that don't go as planned but you can't throw up your hands and say I can't or be angry....it won't help. What does help is pushing through to make it better anyway you can and remembering to behave the way you would want to be remembered....tomorrow is not guaranteed for any of us. I do forget....but those daily reminders normally put me back in my place...till I forget again.
Don't sweat the small stuff...and enjoy life and those in it...
Till next time...whenever I forget to procrastinate :)
Courtney
