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.
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!
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!
