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 :) 

How are you feeling?....

I keep going back and reading this post wondering what to add to make it less sad but I can't!  So before you read on.... know this....

Here's my disclaimer....

While these awful conditions are a huge part of my life...they are not my life.  There are times though that I wish I could scream out how much this all sucks sometimes.   Being that I was raised a lady...I don't.   But that doesn't mean I don't think it and doesn't mean I can't put it in my blog because my blog is to talk about these conditions...and it's not always happy.    

 

DEmotivators...I love these. 

How are you feeling?....

I dread this question.  D R E A D it!

Every time someone asks me this there is an inner monolog in my head saying

.....do I tell the truth?
I feel like crap today...my head feels like a 20 pound bowling ball and I would give anything to just go rest it on something so I don't have to hold the darn thing up anymore.

OR

.....do I lie?
 I feel great! :) ........It's easier and honestly are they really interested in knowing how utterly crappy I feel....? probably not.  Does it make everyone happier and less stressed when I say I feel fine? 

Absolutely....

Am I a good lair?  Nope... I don't think I fool anyone when I lie...but sometimes I do anyway. 

Do I still want people to ask?

yes.  

But only if you are truly interested because  I just may decide to tell the truth...and there are days that I want nothing more than to tell someone how I feel about all this....it's not something many would want to hear and it's something even fewer would be able to understand.  

But it would be awfully therapeutic to scream how much Chiari and Basilar invagination sucks just once....

Not really Chiari related but....

I guess this could somehow relate to Chiari but its a stretch :)

The relationship to Chiari would probably be life goes on and so do I.   Some days suck....others I feel perfectly normal.   Everyday I wonder what's coming..but life does go on.  

I loved this quote and am seriously thinking of getting the last part tattooed on me just in case I forget.

Ob-la-di, ob-la-da life goes on.... 
 (a Beatles reference for those scratching their heads)

Speaking of living....
We went to  Disney in May and had a blast.   I did not have one headache the whole time!  I was scared that I would have a bad day or many bad days but nope..no bad days..none, zilch, nada!

....it was awesome and I felt normal.

Making memories!

...great ones that we will remember forever. 

Disney was great and I have never felt so much like a kid than I did sitting at the base of Cinderella's castle during the fireworks....not even when I was a kid.  Absolutely amazing! 

There are moments that you thank God for.... being with my family during that fireworks show was one of them.... 

It takes a licking and keeps on ticking...

So I left off (far too long ago) with news that I was going to have a cardiac ablation to fix my SVT.   

How did it go you ask???....

It positively ROCKED!  Such an easy procedure to fix this annoying heart stuff I had been suffering from most of my life.  I had my echo on the 9th of April and the procedure on the 10th.

I was checked in, loaded up with Valium, and wheeled off to the operating room.  The nurses were blasting Aerosmith in the operating room....I either thought these guys are awesome or boy I am in trouble :))  Turns out the were awesome!   

Dr. Patel came in and told me what he was going to do...which was to fix me.   Then told the girl with the drugs that it was time to go night night :)  The last thing I remember was telling the girl...please make sure I stay night night through this whole thing! Some stories I had read said people were awake though this....no THANK YOU!!

So did the surgery go off without a hitch? ....

Absolutely not!  This is me we are talking about and nothing about me is normal.  

I guess normally the issue is caused by something in the left side of the heart but mine was on the right.   So the doc had to puncture the wall with a needle to get to it.   He did a fine job and I didn't feel a thing.

So 5 hours after this "heart surgery" I went home.   How cool is that?   I can't even imagine what they had to do to fix this 15 years ago...medical technology not only amazes me it makes me hopeful.  If I wait long enough maybe they can fix my head just as easy....or easier at least.  

Ha!!  Saw it and had to add...it made me laugh

3 days of hanging out in the house and I was my normal self again....still amazes me!!  I keep thinking if I lean over or do something that would have sent my heart into a frenzy before that it will happen again but it doesn't....its amazing! 

Before getting this procedure the doctor said there was a possibility that some symptoms I was attributing to Chiari may actually have been from my heart.   I was excited about the possibilities.  It did fix the heart problems.   But I can't see much else that has changed.   Maybe less headaches? ...but not enough to say wow it did fix this or that.   I did fix my heart though and I am so unbelievably happy and grateful to Dr. Williams for figuring this all out and Dr. Patel for fixing it! 

Hopefully this is the end of my medical excitement for awhile.  *Knock on wood* both my BI and CM have been behaving and my only complaint is headaches...not too many and not too awful.   I can live with that!