Hey Stranger!

For years, I thought this blog was long gone. My email changed, and I couldn't get in! Well, I figured out how to get back in, so here I am, some six years after my last post. The world has changed so much, and I am going to hold myself back from having ChatGPT rewrite this for me, no matter how badly I want to! 

I just wanted to post and say...I AM STILL ALIVE! If you had told me I would be typing this 14 years, 7 months, and 9 days ago, I wouldn't have believed you! I thought for sure this thing would have killed me by now.  But, here I am and I would say better off than I was back then, even being 14 years older!  Those RULES still apply!  They have never gone anywhere and are a part of my everyday.   So, while you read this....go get some water and for God's sake, sit up straight, shoulders back, and get that head over your shoulders.  You will thank me later! 

First off, how have you been?  I hope life is going great! I hope you are healthy and living your best life! I've missed you :) 

For me, I have been doing great as well.  Remember that wonderful husband that I had back then?  Well, since then, I realized I would be better off without him holding me back.  19 years of marriage and poof...gone.   This is a good thing...don't be sorry for me!  I also moved away from Wilmington (away from the ex) and moved to Florida to be near my twins and grandbabies.  

I now have 5 of the most incredible grandkids anyone can have!!  I MADE IT! I was so scared I would never meet them, but I did, and now I see them all the time.   They are just 15 minutes away!  Life has blessed me in so many ways.   I can honestly say, I see myself at their weddings now.  I know I have a future and know I am going to be okay.  If I'm not, I will live the best life I can until the end comes.  

I've got SO much to say here, but don't want this to be so long no one reads it, so just a few more things before I go. 

For years, I lived like I was dying, believing I was dying.  For years,  I felt like I gave up just waiting for the end.  I said it once in this blog, I decided I would no longer mourn the life that I was still living.   To remind me of that, I got a tattoo of a Phoenix on the back of my neck just under the thing that changed my life forever.  Now, when things are dark, I grab a mirror and look at that  Phoenix to remind myself that I rose from the ashes and am alive again.   I am happy, I am healthy, and I have a future.  Now, I wish I had put it in a place that was easier to see LOL! 

I like who I am today.  I like what this thing has made me.  Is it a blessing....eh.... ugh!  I have to say yes, it was, as a matter of fact.  Do I hate that I had to learn to be a better person such a hard way, yes.  But I did, and it's all good.  

Headaches... they still show up.  Bad days, neck issues, double vision....all still there.  Those rules saved my life.  Are you still sitting up straight???? Do it! 

Who knows if anyone who used to read this will see it again, but if a newer post helps someone newly diagnosed find it, I'm glad I did it.  

As always, if you are going through this, I pray for you. You are strong, and you will always find strength when you don't think you have any left. Don't lie down and give up. Keep fighting. I am living proof that some stories have a happy ending.  

I still haven't and never will get that surgery.   I wished I could go find Dr. Oro and tell him I beat the odds.  It's been a long time since he said I had 6 months to go under the knife. 

Take care of yourself and God Bless!  

8 Years Later… and stronger than ever!

You know those moments in life that you can play back in your mind like it was yesterday?….the moments that fundamentally change you as a person and how you view the world.  Moments like 911, your wedding day, the birth of your children, or the day the doctor calls to tell you that you have a super rare brain condition no-one knows anything about…..or hell, that most can’t even spell.  

Well, it was 8 years ago this week that I got that call….  Dr Williams starts by saying “Now I don’t want you to worry, but……(not helpful)….. I reviewed your MRI with a neuroradiologist and we have confirmed Chiari Malformation….”   My life up to that point was relatively uneventful and I was totally assuming this is no big deal and happens all the time.   Well, it was a big deal, it happens like never, and it has impacted my life literally every second of every day since then.   

I barely recognize the person I was on Feb. 10th 2011.  Back then, my tomorrows were guaranteed (or so I acted), I didn’t understand how important each moment was, and I lived oblivious to what life is like fighting something that I wasn’t sure I’d beat.   I thought I was strong, but perspective changes when EVERYTHING changes and just living takes on a whole new meaning.  In retrospect, there were so many moments that I took for granted or forgot completely because I just assumed there would be more just like them... Well, you can’t get them back and there isn’t more just like any of them….each moment is new and important!  

Back then I had no idea what strength was.  There had never been a moment that I prayed to God that he would just give me one more day, one more year, or that he would just let me be around long enough for graduation, grandbabies, or weddings.   I had never had to spend every waking moment fighting something I honestly thought would kill me. 

But, I made it to graduations, grandbabies, and weddings and this thing has not killed me.  I have found strength that I never knew was possible and I live every day knowing that the moments we have will never happen again.   I know that every day that I feel like there isn’t any fight left in me, I will find more buried somewhere deep inside and keep going…..and now I know that regardless of what happens I can face it head-on.   

The post below is from Facebook a week or so after all this started to go down….  It is certainly well disguised, but somewhere in the last 8 years, I have actually started to LIVE my life.  It took a few decades and a series of really crappy events, but I LIVE, I LOVE, and I am so truly thankful for each and every moment because I know there won’t be another like it.  Maybe it’s a blessing, but I wished learning it wasn’t quite so painful!! 

Too many go through their entire lives and not ever understand what living like you are dying means.   My only advice to them would be to be thankful for each and every moment….write it down, take pictures, and be thankful for the little things.  Tomorrows are not guaranteed even if we act like they are.   

This has been a crazy journey and one that’s not over….not by a long shot.   I’ll post again, just like I have done so many years before, that I am growing from this, stronger than this, and LIVING through this next year and the next.   I’m not going down without one hell of a fight…. 

This too, shall pass....

This post could potentially be a mess of jumbled thoughts of me talking to myself but this blog is technically a journal that’s public, so I’m going to go with it... plus ‘Ramblings’ is in the blog title so you knew what you were getting into 🤣 

A few years ago I wrote a few blog posts about ‘new’ issues that are now becoming reoccurring themes in my life. I’d never be able to make the connection that something infrequent back then is frequent now without this blog... 

Moral of the story.... write it down! 

ANYTHING and EVERYTHING, so you will have documentation of a baseline and see exactly when things begin to change. Now that I’ve actually re-read that, I’m on the fence if I actually want to know what direction my health is heading... Still I think a baseline is helpful...but it’s damn scary. 

Over the past few months this trend of issues becoming more frequent is starting to consume my thoughts everyday. Panic seems to snowball and there really isn’t anyone that understands enough that I can talk to. Also I don’t talk about it because I’m afraid to face what I am most afraid of and/or that I’ll just sound like an overly emotional crazy person who isn’t being rational. 😬... 

• What happens if this trend continues and doesn’t get better? 
• What happens if I can’t work? 
• What happens if I don’t survive this? 
• How long will I survive this? 
• What is this new pain? 
• Why do I feel this way? 
• When will I feel better? 
• Is this normal? 
• Is this new? 
• Is this the NEW normal? 
• Am I overreacting? 
• Why me? 
• What if this is like all the other times and a week from now I'll feel perfectly normal... Why do I worry about so many things I can't control!!! 

No one can answer any of them, which is one of the hardest parts. 

Funny thing is every day, dozens of people ask the same questions in Chiari Facebook support groups. Being that we are all so different and doctors are not very helpful, crowd sourcing your questions is sometimes the best option. Some make me feel not quite so alone. Some scare the hell out of me. Regardless it's therapeutic to support others who you know feel a lot like you every single day.

If you are going through this or are close to someone who is, I highly recommend joining more than one support group if you haven’t already. At the end of the day, the world is a little smaller and you are a lot less alone in it. My only advice... don’t take things posted to heart cause what happens to others, won’t necessarily happen to you. Your journey is yours, but don’t walk it alone. 

One random thought that I haven’t shared with anyone, but want to share here... (cause a baseline is important as previously noted) 😁 

Years ago when I started down this journey, multiple doctors told me that my only option was to have a surgery that I’d rather die than go through with. They said to have it ASAP (Dr. Oro said it was a must within 6 months, some 8 years ago). Yet today, I refuse to go down this terrifying path and the worse I get, the more this choice haunts me. 

• Is it the wrong choice? 
• Am I being selfish by not going through with it on the off chance it could prolong life with my family? 
• Would it actually prolong my life and what would that life look like if I did? 
• Would I be selfish for going through with it and not being able to work? 
• Will there come a day that I’ll regret my decision to not go through with it because some permanent neurological symptom suddenly showed up? 
• What would life look like if I fell and ended up with brain stem compression?.. being dependent on my family for day-to-day functions is one of my worst fears. If I had the surgery, the likelihood would decrease significantly, but who knows what life would actually look like. 

I DON’T KNOW!! I hate not knowing. 

So what I’ve done is stick my head in the sand for years. Since leaving Dr. Oro’s office so many years ago, I haven’t sought out someone locally who can help me with the symptoms because I’m so afraid they will say there is no help and surgery is the only option. Sometimes not knowing is less scary, but I’m reaching a point that I can’t ‘home remedy’ my symptoms and live a normal life. 

So, I don’t know what to do... I hate not knowing. 

Oh, PS... I actually just lied. I did reach out to my primary to help with my symptoms... weak neck and muscle spasms. He diagnosed me with cervical osteoarthritis... FOR THE LOVE OF GOD.... stop diagnosing me with shit. 

Then he said I don’t know what to do with you and referred me to a neurologist, except I was too scared to return their call for an appointment. Therefore, my head is still firmly in the sand and no help for my symptoms, so technically it wasn’t really a lie. 

If I had a dime for every time I heard “I don’t know what to do with you” I’d have several dollars.

Tip to doctors... don’t say that. 

So that’s the things I’ve been thinking about and haven’t said to anyone. When I look back on my blog like I have so many times before, it will be helpful to see where I was today and hopefully remind me that this was just a passing phase and feeling better was just around the corner. (like so many times before)  

Update on me: 
My neck hates me. 
Muscle spasms are almost hourly and makes my head feel like it weighs 80 pounds. These spasms set off terrible headaches in the back of my head, I think because I am clenching everything to either hold up my heavy head or get past the spasm. 

That’s pretty much it. It’s funny how, of the 4’11 of me, 3 tiny inches can make me miserable. Everything else feels fantastic!!  

I guess to close... I’m okay. As someone with these awful conditions, I’m better than most and for that I should be very grateful. We are all entitled at a pity party now and then and I feel a little better for having written it down. I promise for a stronger, more positive Courtney in the next post. 

Oh, PS... two more things. 
1.  This website was shared in one of the Facebook groups... it’s a great source of information and very well written. https://chiaribridges.org 

2.  Someone also in one of the Facebook groups made a connection after my listing out my numerous conditions and reviewing my MRI that they were potentially all stemming from EDS / Connective tissue disorder. I suspect this as well. But, guess who isn’t interested in getting a genetic test to find out I have yet another condition that has no cure? This girl right here... I’m fine not knowing!

Lastly, I struggled with the title for this blog till I remembered something that my mom use to always tell me when things were at their worst and things feel pretty rotten now.  This too, shall pass... this won't last forever and things will get easier.   She has never once been wrong about that, so this too, shall pass.   

Like riding a bike...

So, yesterday it was my birthday and my wonderful husband got me a hammock... While I was laying there looking up at the most perfect blue Wilmington sky I started contemplating the last 42ish years, but mostly the last 8 years since my original diagnosis and how they have fundamentally changed me as a person.  

I had this wild idea to finally (after so long I'm almost embarrassed to look) update my blog!  So here I am and here you are...it can't be all that hard to start again...so let's begin! 

On a fairly infrequent basis, I like to post things I've learned through this journey living with a slew of rare and dreadful conditions...maybe someone will find some part helpful or can relate to this unpredictable crazy road.  4 years ago in a post I said that they haven't changed my life for the better and I'd probably rather not know... I've since decided I was partially incorrect.  They have changed my life and not specially for the better, but these huge challenges shape us into stronger people and I hold the handrail going down stairs which is probably a pretty good habit so, maybe knowing isn't so bad.    

In no particular order, some random things that I've learned since being diagnosed with Chiari Malformation, Platybasia, Cranial Instability, Basilar Invagination, and my newest addition cervical osteoarthritis: 

• Giving up really isn't an option... life isn't fair, but its damn sure better than the alternative and regardless of the terrible things that happen in our lives, there countless others that have far worse terrible awful things to face.  Find perspective when things are really bad...it's a great survival tactic! 

• If you have Chiari, chances of that being your only diagnosis are pretty much zero...one does not simply have Chiari Malformation.   If I didn't have such a terrible headache I'd make that a meme.  If you think about the bodily functions that are controlled by your cerebellum, squishing your cerebellum probably won't make any of them perform better.  Also, whatever made your brain too big, was likely caused by something else.   Just being smart does not increase brain mass or impact skull size.... ;) 

• My RULES (click here) still apply....they haven't changed and are my reasons for surviving a somewhat normal functioning life.  Turns out I was pretty genius for writing those things down. 

• There ARE resources out there and people going through exactly what you are...AND they freaking love to talk about it.   When I was diagnosed I literally thought I was completely alone... for awhile I think I was.  But, there is this website called Facebook... and it is chock full of support groups that don't bat an eye when you say my brain is protruding from my skull a bit too much today.   It's pretty fantastic... don't do this alone.  I've found that there are many facing Basilar Invagination in both EDS and Chiari groups (which is great because the info out there is sparse!) 

• Speaking of support groups... I'd remember the words grain, of, salt... Just because they may have a million things going wrong doesn't mean you will.   Just because some are worse off, just because someone decided to have surgery, just because something terrible happened to them does not mean it will also happen to you.  We are a mess of weird medical conditions and we are all different.  Your journey is yours, but walk that road with friends who understand and it's a lot easier.  

• Getting old completely sucks... take care of yourself, exercise, eat right and all that stuff.   With these conditions (or I guess anyone), when you have stopped trying its harder to get back to a healthy routine and those who struggle with medical conditions find it even more hard to gain lost ground....speaking from someone who is trying to revert 2 years of not trying :( It kind of sucks.  

I could probably list about 20 more...crawl before you run... I'll keep it short so maybe I have a reason to post again sooner than 2020.  

So, an update on me.  I've been newly diagnosed with osteoarthritis of my cervical spine which seems to just piss off anything related to my Chiari.   Headaches are much more frequent, I think mainly because my posture is terrible because my neck hurts so bad.  Have you ever read "If you give a pig a pancake"?.... its kinda a lot like that.   One thing leads to another and another and another and then you feel really really crappy.   Heat, ice, sleep (or any unconsciousness in general) seems to help a bit.  I'd probably be a-ok if the neck issues weren't so bad lately.   

At the end of the day, I think that overall I'm pretty damn lucky to have the conditions that I do and still live the life that I am able to.  These conditions have in some ways changed my life for the better... I am more thankful, a better person in general, and live every day knowing life isn't guaranteed.  

As always, if you are newly diagnosed, living with this, or supporting someone with these conditions, my prayers are with you.  Our stories are all different, but finding people who can relate to you and your loved ones is a huge relief when you are fighting something so few know about.  Feel free to reach out to me and defiantly find groups online to help... we no longer have to face it alone! 

New diagnosis and how to support those diagnosed...

In 2011 I was diagnosed with a condition that forever changed my life... that no-one knew anything about. The first 6 months were the most scary months of my life.

Until this week, I forgot what that first 6 months felt like until my daughter came to me to say she had been diagnosed with a rare condition that will also change her life. She and I talked about what she was feeling, how scared she was, and how little people know about this. I started to remember those months...having to tell people what I had, answering a million questions about it, feeling like a broken record, and just wanting to be supported without constantly explaining the bad parts of my condition.

So this blog post is being written to:

• Help people understand what people need and don't need in the first few months of a difficult diagnosis.

So, more rules!...if you read the blog you know that rules are important! :).

When someone tells you, "I was diagnosed with ______."
Please, please, please:

• Remember that this is shocking as hell for her! Her life has changed forever and she is trying to come to grips with what she is being faced with. You may have questions, but she may not be able to handle answering them....I cannot stress this enough! 

• When she wants to talk about the condition, she will open that door. If she doesn't, then be supportive of her, keep conversations light, make her smile, and tell her how beautiful she is...because she truly is. 

• If she doesn't feel strong today, THAT'S OKAY!!! She should be allowed to break, crack, cry, be scared, be confused... and she needs someone strong to stand by her side when she isn't. 

• Don't be sad for her, around her. She will fight this, she will make it through, and she will be stronger for having faced it. Be happy that she is going to do all those things and support her doing them. 

These rules should be followed for ANYONE who is supporting someone who is facing a scary diagnosis. Please remember them and support them how they need to be supported. 

Right now isn't the time for 20 questions or being sad...its time to be strong for them and support them how THEY need to be supported.

x

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.

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!)