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…. 

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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.   

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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! 

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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

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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.

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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  

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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   

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