Eye contact....hurts..

I mentioned in my last post I had a new job...which I adore...if you were wondering :)  

I was thinking about this earlier while talking to someone at work...  eye contact.   Growing up I was taught to look someone directly in the eye when you are talking to them.  It's a good rule to follow and generally I do.   But, when my head is hurting I tend to have double vision...and when I am seeing double it is very difficult to look someone in the eye if I have 4 to choose from :) .  

Typically people don't even know I have a headache so when I avoid eye contact, I'm always afraid they will think I'm being shady or rude...does that make sense?  

It happened today when I was talking to someone (that does not know about my "issues" ...I use that term loosely )....I noticed that they noticed my lack of eye contact... It was awkward...and I hated it.  It's incredibly frustrating and even if I do force eye contact is VERY clear to most that I am not actually focusing on them....because there are 2 of them!  So either way I go, it sucks..  Normally I keep quiet on these days but it's not as easy now that I work in an office.  

This double vision is what actually led to my diagnosis  3 years ago...it has never left  but I've learned to live with it.   Most days I don't notice it unless I am overly tied or have a headache. 

This is caused by Chiari...3 major symptoms are blurred or double vision,  jerking eye movements (nystagmus) , and difficulty tracking or following objects...its the tracking of objects (faces) that seems to be the worst.    

 Outside of headaches, the vision problems caused by CM are probably my biggest complaint and something I deal with on a daily basis.... 

While I don't look at Mr Bean daily...this is a very close resemblance of what I see when my eyes are at their worst..

I was going to post this time about Cranial Instability but didn't finish the research for it yet....such a slacker!! :)   I did however read just how unique we are.... people with BI, CM, platybasia, and cranial settling make up a whopping .04% of the United States population....My math really sucks but it appears to be roughly 125k out of 313.9 million....crazy!!  


So next time!  I will post more info.  

I'll  end with a quote from  English philosopher Allan Watts who said: “The meaning of life is just to be alive. It is so plain and so obvious and so simple. And yet, everybody rushes around in a great panic as if it were necessary to achieve something beyond themselves.”


 As always my prayers are with the families going through this and I am always hear to lend an ear or share advice to those looking for answers.   

Till next time!
Courtney

No news is good news...

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 

And good news continues....

Again...I will open with...if you are reading this please knock on the closest wood you can find before going any further.   I would greatly appreciate it!! :) 

There is this stuff called Vitamin Water (Revive) that I would put right up there with holy water... I believe it has quite honestly changed my life.  

How you say??... Well,  in a previous post I mentioned that water was a main contributor to headaches.   Now, this makes a lot of sense if you are someone with an issue with fluid cushioning the brain or brain stem....less water = less cushion.   I also said potassium helped with headaches but I never really researched why... 

I won't get in scientific details but will explain it the way I understood all this to work.   Basically potassium helps to regulate the fluid balance in your cells.  So it helps you retain the water you drink in your blood stream.   If water does wonders for my headaches....water that helped to better hydrate me would do better....right?   Absolutely!

I got one of these when I had a headache a few months back choosing it because of the incredibly high potassium level.   Its nearly the same as a banana.  I had been taking supplements but the level was so low that it never made any difference.   Bananas did so I figured I would give it a go.   It WORKED!  My headache went away and I felt good.   It could be a fluke so I tried it again...and again ...and again... This is where my addiction to this stuff started.  I started drinking these regularly....like one a day most days and sometimes more.   For months I have felt like a normal person as long as I make sure to keep drinking....and drinking and drinking.   I find this almost to good to be true but I will take it and I will keep drinking this stuff!! 

Even if you do not have what I have...if you have a headache throw one of these babies down and see if it helps!  It's a miracle in a bottle! 

Coca-Cola did not pay me for this endorsement...but I would not be against accepting bribes to further blog about this amazing fluid.   I may even do it again for free :)   It is amazing stuff!! 

So to close.... Don't forget to drink...drinking stuff with lots of potassium (or eating stuff with it) does help with headaches.   And my number one rule still applies....POSTURE!! Sit up straight! Shoulders back...Chin up!!

I know its been so long since I posted...and it is due to this stuff! :)  I feel great!  I don't think of my blog when I feel good because I have nothing to say about CM or BI.... I hope I have no reason to post again any time soon but will happily give a good news update if my good fortune continues.  :) 

If you are going through this or have family that are...I wish you all the luck in the world!  There is nothing quite like the feeling of not knowing where to go when you are so unique...I love talking about the things I have learned and love hearing from families that also have lived through or are living through this  My thoughts and prayers are truly with each and everyone of you! 

Courtney  

Never mind....

So, in my last post I was feeling so incredibly yucky I said....I actually could see myself going through with fusion.

Never mind!

For the past month I have felt like Courtney again....(if you are reading please knock on wood).

As for that whole fusion thing....I cannot think of facing it!!!...once again. So, here lies the million dollar question....what if...

What if I feel totally awful and end up going through that whole nightmarish surgery and feeling good was just around the corner?? I dunno!

My uniqueness makes it utterly impossible to predict anything that will happen and...

.....Uniqueness is overrated ...

I have no idea what changed. I never do. I have really crappy months and really happy months. No in between months...OR I'm not exactly sure what an in between month would be if I were remotely normal....but I am thinking in between would suck for most.

I think...

My rule number one is the reason I feel okay. If you're wondering what I'm talking about go (HERE). Posture..... It's the only thing I can think of that I have really focused on. Who knows really..... But I feel pretty great and I'll take it!!

I guess I should blog more often and actually document the things I do that work and things that don't as they happen.... However procrastination wins most days and I forget.

Anyway.... That's all I have to say. :) I feel great. Life rocks. I hope it lasts.

Bowling balls and wet noodles...

I'm not sure what's going on lately but I feel like crap!!

It's not headaches exactly that's getting me down though....headaches I can totally deal with...I have some experience in that department.

 

I think my head is taking on water because my head is getting heavier! (on and off) :) I swear my normally normal weighted head sometimes turns into a 50 pound bowling ball. My poor neck feels like it is just struggling to hold the dang thing up. (noodle....get it? ;)

This is actually pretty terrifying to tell the truth... For the first time since all this began I can actually see myself willing to go through with the cranial fusion. This is coming from the same girl who swore she would die before suffering that fate. Now... I see living this way a worse fate.

My husband pointed this out.... he said a year ago you wouldn't have considered surgery and now you discuss it like it's going to happen...you are planning for it. I didn't see it until he said something. I can not even put into words my thoughts when I really thought about this... it was powerful. I can't think of a better word to describe it. Not bad, not good just a lot to swallow in a span of 1 minute. I guess that's a whole different blog post...  

My how times change..
Luckily I don't always feel this way. So I am not headed to the O.R. just yet!! Two days ago I had dealt with this 50lb bowling ball head for 2 or 3 days straight. I was at the point of sheer panic and was riding home from eating out with my family and turned my head to look out the window and POP!! My neck popped and my head went back to a normal weight......? ....I dunno!?

Since then my head has been its normally normal weight (there went my new smarts....or water) but my neck has felt like it is still exhausted holding it up....but my head is not heavy. So no headache....no bowling ball but a tired sore neck. This is actually okay except I am terrified the whole heavy head thing will come back with a turn of my head. It's not the first time it's happened but its defiantly the most memorable.

If I were not something straight out of a freak show I may be able to ask a doctor what just happened to me but since no one really knows much of anything about what I have I'll just keep guessing...

Oh!... I did have one other thing... I was googling "heavy head"... Imagine!...me googling something :))

....there were only About 206,000,000 results (0.27 seconds)...I didn't read them all...

Anyway I found something interesting... an article that hammers home posture...I have preached it before...this is good stuff!...or thought provoking anyway...

This came from http://alisonimiller.com/your-head-is-heavier-than-a-bowling-ball/

Your Head is Heavier Than a Bowling Ball

It’s true. For every inch that the head moves forward in posture, it increases the weight of the head on the neck by 10 pounds! An average bowling ball weighs 16lbs or less. If you consider how heavy a bowling ball is imagine how heavy your head is to hold when it juts forward.

Poor neck posture leads to head, neck, and shoulder pain. Daily activities such as working on the computer, driving, and sleeping (with bad posture) all promote a forward head posture.

Give your head, neck, and shoulders a break this week. Practice awareness, stretch, and get your head back over your shoulders, not in front of them!

So..... Remember my rule #1.

Posture.

Sit up straight. Stop slouching. Chin up. Shoulders back!!...

Forgetting this rule is probably why my neck hurts so dang bad! Ta! TA! for today! :))

One more teeny weeny little thing... one of my friends today said she actually reads (and likes reading :) my blog posts....I wasn't sure if anyone did!....it was a great feeling and I am thankful she told me....thank YOU (you know who you are) :))

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!)

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 :)