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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