4 Years.. I am doing just fine!

Nearly every blog post I apologize for not posting more often and my habit of procrastination...but I'm not going to do that this time.  Anyone who reads this regularly has already come to the conclusion I am hopeless!

Feb 10th was my 4 year anniversary since my diagnosis and I thought that was the perfect opportunity for another post.. Better late than never right?

So, Feb 10th I was given news that changed my life forever.  (Go back to the beginning HERE)
It didn't change for the better and I would probably rather not know, but I do so here we are.

Ive listed the things Ive learned for each of my anniversaries so the tradition continues:

• I've learned to trust my gut on most things... Aug 2011 I was told I must have surgery right away, but they couldn't tell me what would happen if I didn't.  I'm hard headed as hell (no pun intended) and have not had surgery.  I am more healthy today than the day I was given the news.  Doctors don't always know whats best, trust your gut when its trying to tell you something 

• I've learned that Feb. 27th is rare disease day and as rare as I am, the number of people who struggle with these rare diseases everyday make me a little less alone in all this.  There are 7000 rare diseases listed in the US... that is a lot of people dealing with something very few know anything about.  Remember us that day... Say a prayer, we all could use it   

• I've learned, I am going to make it through this and I am stronger than I thought I was.  I can face what comes because I have no choice...  I have stopped worrying everyday about what this thing is going to do to me and how it will turn out in the end.  There is no use in mourning the loss of the life you are still living happily... So I don't.  

That's the condensed list... I could go on, but you get the picture.  I am doing okay, physically and mentally and feel more confident every day I make it through.  So overall a happy anniversary. :)

An update on me...

Pretty damn good.  

I'll elaborate tho... I have symptoms, but I've learned what to do to help control them.  Everyday I remember my golden rules... (Here they are). I live by them, I've added to them and modified others, but posture and hydration are what is the difference between normal happy healthy Courtney and nightmarish headaches and BI/CM symptoms.

That's it... Life is good.

PS: as always if you have this or have family that does, I pray for you.  Its scary, but its not the end.  I love talking with others who also have this.  If you have contacted me and I haven't responded 😁 it's because the mailbox for this account if chock full of spam.  Email me here: courtneyinnc@outlook.com.  I promise to check it!!

Ill post again... Eventually lol.

Perspective once again...

For months I have been in heaven... No major BI/CM events and as much as I knew they were lurking below the surface I had forgot how bad they were till they reminded me.   

This week they were back with a vengeance and it's been a long long time since I have felt that awful.   I don't know what brought them back but my husband mentioned something about the weather being so cold and I am thinking he may be on to something.   For several years winters have always been worse than any other time of year.   My circulation suffers the most but over all I normally feel like crap all winter long...with the exception of this one...Until Thursday.  

Funny thing...I was talking to a friend at work telling her how wonderful this winter had been so far and how awful most of them were....wouldn't ya know where was no wood in sight to knock on.  So winter or lack of wood...something made this thing come back full force.   Friday I was down for the count and today I am better but can't seem to shake the exhaustion of the ordeal.   I pray this was just a freak event and one that does not include other BI/CM episodes...especially any as bad as this last one.   

I'd love to hear from anyone who has what I have and if weather is a major factor in symptoms showing up out of no where.   

I thought this image was interesting.....symptoms...shooting webs and time travel?  

 I do not have either of these but they would be cool.  

So I have been meaning to post this for a few weeks and have of course done a fine job of procrastination :)  But since I am here anyway complaining about my freakishly painful headache now is a good time... 

If you have read my blog before you know I am waiting on some super smart person to come up with a way to fix me without destroying the quality of my life to do it. Today total cervical fusion of the c1-c3 pretty much means I turn into lurch type neck and can't move around like I can now.   That means looking over my shoulder to drive or everyday things will be impacted...not to mention the near year healing time.   This technology is coming and I am determined to hold out till it is here!

My husband sent me a link to this site:  http://www.centerforartificialdiscreplacement.com/ 

Now I don't know if they can fix what I have but even if they can't it is defiantly a step in the right direction. Flexible was what I was hoping for...less invasive sounds even better.  I filled out a form on their site to see if patients like myself would be considered for this procedure and I will update what they come back with.  

So the perspective I mentioned in the title.   I have been bouncing a long oblivious for some time of the time bomb that is my brain and this week I was reminded it is still alive and well and ready to strike at any given moment.   So now that it is over I will not be so quick to forget its hanging over my head and will continue to be thankful for every healthy pain free day I have.   There have been quite a few (pain free days) and I am truly lucky to be as healthy as I am given the circumstances.   

That's all for now...

As always if you or someone close to you is going through this, know you are in my prayers and will help anyway I can if info or support is needed.  I always love hearing from others with similar conditions. 

See ya next time! 
Courtney  

Links and Mandela..

I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.
         Nelson Mandela

I was reading a blog about Nelson Mandela's life and came across this quote of his.   It hit close to home and I wanted to post about it for a few reasons.  

1.  I can't tell you how many times I have heard someone say how brave I was going through this.   Not once have I ever actually felt brave or courageous...but I have felt like I have no choice to make the best of the hand that has been dealt to me.   Maybe that's courage...but it sure doesn't feel like it.  I am terrified of this.   

2.  While I can't see a lot of info on who is visiting my site, I can see sometimes what brought them here.   One search term caught my eye.... life expectancy Basilar Invagination.  I googled this many years ago and know all too well the helpless feeling of typing those words.   My heart broke for that person...  Whoever they are you are in my prayers and you ARE brave for facing that search...its not an easy one to face.   

3.  I have a friend that is going through something as odd as the things I am going through...hers are weird brain issues too and just as unexplainable.  She too makes the best of this life that keeps throwing curve balls.  I admire that in her and can see her courage in her journey since I am on the outside looking in.   She will know who she is if she is reading this...and I hope she knows I pray for her daily.  

We will get through this.... I will be damned if this thing will beat us without putting up a fight.  

Now on to BI... did you know that the largest population of BI occurance is in India?   I read several articles on this recently and am keeping my eyes on the Indian medical community.   If this is more prevalent there than anywhere else....I betcha the innovative medical procedures to help patients with this condition will come from there.  They are pretty smart there too..My heart surgeon is from there I believe and I adore him!... I have high hopes for them :)  I read one medical university does on average one BI reconstruction a quarter....that is HUGE!

Here is a excerpt (and a link) to one of the articles in case you are interested. 

Read more here
"Basilar invagination is significantly common in India and in the Indian subcontinent. Even in India, there is a disproportionately high incidence in north-western belt of the country. No genetic factor has been identified that could explain the discrepancy in incidence. Our understanding in the subject suggests that muscular weakness of the neck due to protein-calorie mal-nutrition might be the key initiating factor in providing a foundation of instability that leads to formation of abnormality of basilar invagination. Poor delivery practices and excessive use of forceps may have a role in initial injury to the craniovertebral junction muscles and initiation of the process of basilar invagination. Degeneration of the spine in general and craniovertebral junction in particular can lead to instability and subsequently to basilar invagination. Some workers had related lifting of heavy weights on the head to spinal degeneration. Deficiency in specific vitamins has also been incriminated to be causative."  

I'll post more if I read anything new on this...but it's promising and doctors are paying attention. 

I found a few more things.... I heart slideshare...you can find nearly as much on there as you can google.   Imagine a place full of powerpoint slideshows for anything you could possibly think of...its fabulous!!  

This one below was uploaded a week ago...  
Here is a link to a recently uploaded slideshow regarding BI.   I learned a few things from it and saw some shocking MRI images...(not like gross shocking...but way way worse than me shocking)   

Go here to view all the presentations uploaded regarding BI within the past year...some are very interesting.    

So, yeah...lots of links and the great Mandela is all I have this time.   

An update on me...if I would remember to drink and actually took time to take care of myself I would be perfect-o...but I have really sucked at both lately and feel it.  There doesn't seem to be enough time in the day and I am always focused on something else...therefore forgetting to drink and or workout...sleep...eat right...eh...basically the things that keep me functioning like a normal human.   So my new years resolution...take time and remember my rules to live by.  

Things aren't awful...just headaches and eye issues but both are preventable and I am too hard headed to take my own incredibly awesome advice!! 

Till next time!!  
Courtney   

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.