My Story and Blog Meat..

I always wonder if a new visitor comes to this site and thinks...what the hell is she talking about???...because you see the new stuff and really have no idea what the backstory is.

40% of all my visitors were new this past month...so is that 40% thinking I have no idea why she doesn't like people asking her how she is feeling... (my last post...) OR if some visitors already live with these conditions and kinda already know where I'm coming from. 

 I dunno!!

So.... I am adding a link to go back to the beginning ... Just in case someone really wants to know but is too lazy to keep clicking the 'see older posts' link until they got there... Ya never know! 

 I am that lazy! ... I can't be the only one.

My story starts here (click here)

So that's where it starts but I also wanted to add links to the informational posts I have made.   Believe it or not the blog has not been me just rambling on and on about nothing.... It just is most of the time :-p

So here are links to the meat of my blog...there won't be many I am afraid!


What is Basilar invagination?   - its not just a thorn in my side!

What is Chiari Malformation?  - its not just a pain in the neck...theres way more to it :)

BI and CM connection to SVT  - all these acronyms!!

External Sites

American Syringomyelia and Chiari Alliance Project - external site with lots of good info

Chiari Connection International - another great website for Chiarians


There are lots more Chiari sites that I will add later.  

There is even a great community of people with Chiari and a couple even have Basilar Invagination...which it awesome to me! Not that they have it, but I am not completely alone. Lord knows I feel like it sometimes...  It's called the Chiari Online Support Group.... (here is the link to that site)  

Now I know you are thinking....wait Courtney!!  Those are great websites about Chiari!  But what about Basilar Invagination??!!??  

I know that's what you are thinking!!  (insert sarcasum here) :))  

well....

There are none!! Ugh!  Zip! Zilch! Nada!  Or at least none that I can find that are not hospital advertisements or doctor studies.  If anyone knows of one please let me know! I'd love to have it!!

So that's it!...

..the beginning of my story and my blog meat... I will add more blog meat soon and throw in random thonghts about things I think about more often than not...  :)   Soon!  I will try my hardest not to wait 2 months between posts.  But honestly you do not want to know what I am thinking most of the time...I am pretty lame and my thoughts are reletivly boring. 

Until next time!! (thanks for making it all the way to the end!)

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Living through it....

It's been awhile since I updated but honestly there hasn't been much to tell.

In a nutshell....Life is good.  Headaches suck.

These aren't just headaches these are mini nightmares and feel like my brain is going to explode out of the back of my head....graphic..yes.  Sorry :)

Everyday I make little changes to make living with Basilar Invagination and Chiari easier. I am so extremely hardheaded (no pun intended) and refuse to have surgery so.... I have had to adapt.

I figured I would share how exactly I have adapted...how I am able to live through this..Maybe it will help someone else dealing with the same thing. I betcha these would work for anyone with a headache brain issues or not.  

So here goes....

#1. Posture.
Sit up straight.  Stop slouching.  Chin up. Shoulders back!!...

Moms across the globe chant this to their kids every single day.   It's not easy to remember even if the punishment for not sitting up straight is a mini nightmarish headache.

My spine shoves my brain stem into my cerebellum ...when I don't sit up straight it shoves it even harder.  So do I always sit up straight?

Nope!  :)

Even as an adult I forget this one simple rule.   When I feel bad its even harder to sit up straight and when your head feels like it weighs 20 pounds its hard to keep the darn thing up sometimes!  But I try and when I do it helps immensely! 

My husband has taken over the role of mom reminding me to sit up straight.... I am grateful for it too.

I am guilty of every last one of these....daily!

#2. Water.

I read somewhere that 80% of all headaches are caused by dehydration!  That's crazy and preventable!  Not drinking enough will bring on a chairi headache just as fast as not sitting up straight.

Problem is... 

I don't remember to drink sometimes until it's too late.  I guzzle gatoraid until my headache starts to ease up.  Sometimes it works.   



#3. Cold packs.  

As I sit here typing I have a frozen cold pack balancing on my head. :)  Once I have forgot to sit straight and drink water and have a raging headache a cold pack can be the one thing that makes it bearable.   They don't typically make them go away but defiantly make my bad days easier.  

Cold...get it? ... its a stretch. But I love these :)

 
#4.  Tension tonic.  (or peppermint oil)

Tension tonic web site

We have a store here that sells this stuff that I think is a miracle!  I am like a walking billboard for them and was not paid to say any of this!...if someone has a headache I'm reaching in my purse to get my handy dandy roll on.  I even gave it out as Christmas presents.  ;-p 

It's peppermint oil and some other stuff...it rocks.   Dr. Oz mentioned peppermint oil on his show too...it does help if you can catch a headache early.  

 
#5.  Just say no... 

I steer as far from pain killers as possible and can't think of the last time I took something stronger than Advil for pain.  It always makes me feel crappier (<--is that a word?)  when it's wearing off and the headache is always still there...just dulled.   I noticed when I did stop taking pain meds my headaches significantly decreased....I think many of them were rebound headaches and not actual Chiari or BI headaches.  


That's it really...  I just deal with it when all else fails.   I have an amazingly supportive family that knows when my headaches are really bad and they normally send me straight to my room to go to bed...

Reading blogs of others that are going through this I am incredibly blessed to not be as bad off as most.  Considering my MRI's look much much worse than most I am even more blessed.  

When you are faced with something awful you really have no choice but to face it.   So I do.   Most of the time life is good :) 

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