I loved The Martian. And when I say I loved it, I mean it was my favorite movie last year and one of the few that necessitated more than one trip to the movie theater.
I grew up listening to David Bowie. I was a child of the 80’s. Let’s Dance, China Girl, Space Oddity. And one of my all time favorite movies (A Knight’s Tale) has Golden Years beautifully woven into it.
The world will miss you, David. But wherever you are, I promise it isn’t boring!
“You know your love life has always been a disaster area, they oughta have those big orange cones all around ya.”- Hope Floats
Okay, well…it’s not my love life, but I’m pretty sure I should have little orange cones around my life right now.
Everything is just such a mess. Nobody’s talking to anybody, my husband lost his job, and us landing back on our feet might mean turning everything upside down and moving back to Maine. Which, admittedly, is not the worst thing that could happen, but we just bought a house a year ago and we’ve moved 7 times in the last 8 years, and we were trying really hard to create some kind of stability and predictability.
Callie(starts to cry): Everything in my life is always a disaster, I really don’t want this to be a disaster, I don’t even want to move or breathe, I don’t wanna do nothing, I don’t– What if I do something and it messes this baby up? ~ Grey’s Anatomy, S7;E13
My life feels like a natural disaster right now. Everything is sideways. Everything that was last year now isn’t, and everything that wasn’t now…is….or something. I feel like Alice falling through space.
My son is transitioning into his own life and he’s at that age and stage that means he needs to separate himself from his family and create the adult version of himself. Which means he’s not really talking to me right now.
My best friend and I ended up having a disagreement that I didn’t really realize was a disagreement until she didn’t call for well over a month, and the silence was deafening. But now she has called and I haven’t been able to talk to her, and basically I have no idea what to do right now.
It is an incredibly rare thing for me to hit a situation that leaves me not knowing what to do, or say, or think. But everything is hitting all at once and I can’t breathe, or think, or sleep, or eat. My hands shake, my fingers turn blue, I’m nauseated all the time, and I really need to call my neurologist because I’m having trouble swallowing. Which is likely related to my brain tumor.
They believe it’s benign, but it’s inoperable and pressing on the trigeminal nerve and one of the branches of that nerve is related to swallowing.
I’m stuck between not being nearly as stoic and strong as I’d like to be, and knowing the last time I had a bunch of stuff in my life fall apart, the being stoic thing made me want to jump off the nearest bridge. Because of that, I keep reminding myself that I need to be true to who I am, so I never make that mistake again.
All I do know right now is I need some little orange cones. And I’m pretty sure I know how Alice felt as she fell, and fell, and fell through space.
Life is so short. It all happens in a blink of an eye. Where were you a year ago? Five years? Or was that actually ten years ago? I’ve lived in Maryland for 5 years now, but I can close my eyes and see Maine. Or blink and see Michigan. My dad’s been gone for over three years now but it feels so short that I have to remember what year my son graduated to put the time on it.
People live and die everyday. And I’m not necessarily talking about the big stuff. Last Friday the world saw a lot happen.
But it’s not even the big stuff. Car accidents, heart attacks, hell….I could trip on the stairs.
I’m just saying don’t leave anything unsaid. Forgive, connect, love one another. You just never know when the last time you talk to someone is truly the last time.
You guys are amazing! I can’t believe I’m being read in 21 countries! Thank you & Happy new Year! ❤ ~ Xun
The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.
Here’s an excerpt:
A San Francisco cable car holds 60 people. This blog was viewed about 470 times in 2014. If it were a cable car, it would take about 8 trips to carry that many people.
If you woke up tomorrow, and your internet looked like this, what would you do? Imagine all your favorite websites taking forever to load, while you get annoying notifications from your ISP suggesting you switch to one of their approved “Fast Lane” sites.Think about what we would lose: all the weird, alternative, interesting, and enlightening stuff that makes the Internet so much cooler than mainstream Cable TV. What if the only news sites you could reliably connect to were the ones that had deals with companies like Comcast and Verizon?On September 10th, just a few days before the FCC’s comment deadline, public interest organizations are issuing an open, international call for websites and internet users to unite for an “Internet Slowdown” to show the world what the web would be like if Team Cable gets their way and trashes net neutrality. Net neutrality is hard to explain, so our hope is that this action will help SHOW the world what’s really at stake if we lose the open Internet.If you’ve got a website, blog or tumblr, get the code to join the #InternetSlowdown here: https://battleforthenet.com/sept10thEveryone else, here’s a quick list of things you can do to help spread the word about the slowdown: http://tumblr.fightforthefuture.org/post/96020972118/be-a-part-of-the-great-internet-slowdown Get creative! Don’t let us tell you what to do. See you on the net September 10th!
via Battle For The Net.
I think every creative soul is just a little more sensitive than most people. At best, it’s just that you feel something completely. At worst, it’s like walking around without your skin. There’s no barrier or protection from the elements. If I’m truly angry, it’s throw-something-at-your-head-pissed-off. If I’m hurting, it’s almost worse than physical pain. But the flip side of that is when I’m happy, I’m completely joyful. If I love you, then I love you completely, and that leaves me vulnerable. If you hurt me and I hate you, then I wish terrible things on you. (Then I remind myself that I’m a Buddhist and I believe in karma and it isn’t right to wish pain on another living thing. And then I go meditate.)
Every artistic person I know has something in them that makes them more sensitive to the world around them. It doesn’t matter if you’re a writer, a painter, an actor, every artist feels the world around them on a level that most people can’t see. It’s like living with another sense. We’re so much more vulnerable to the world around us.
I tend to write a lot more when I’m in some kind of exquisite agony. I journal almost every day and I have several word documents on my hard drive with the first few chapters of a book I just can’t seem to write. But when I’m hurting, when the world has taken something from me, I turn to words and I tend to publish more blogs, journal more pages, seek more words trying to get it all out. Part of it is that I hope my words will help someone that’s feeling something similar. Part of it is that I need to get these thoughts and feelings out so that I’m not crushed under them.
My world is different today. One of my heroes and icons has taken his own life because he couldn’t see past the darkness. It reminds me of the delicate nature of the artistic soul and brings my need to find words to soothe the pain to the surface.
The pain is so much bigger than I am right now. So I write. I blog. I journal. I stand in the shower and think of all of the words I can possibly find to apply as a salve to the wound.
I have so many things going on right now. I’m at the beginning of treatment for a brain tumor. I’m planning the next school year’s curriculum because I homeschool my youngest. My son is in the final weeks of deployment. And I am listening to the rain today, thinking that the universe knows it should release the tears today. It should be raining today. The thunder should be rumbling. The world should be acknowledging that it lost something great.
And I’m trying so hard to find some kind of peace. To let go of some of the agony of it all. Because the pain is bigger than I am right now. And because I seem to be living my life on seizure patrol right now. If I’m going to have a seizure, it’s probably going to be because of a heightened emotional state. I don’t know how much that makes sense with the rest of this blog, but these are all of the words in my head and it’s okay if it doesn’t completely make sense yet. I just know that I tend to have what my neurologist refers to as “absence seizures” (brain locking up, otherwise seen as me not being able to find the word I want in the middle of a sentence). And I get twitchy when I’m upset.
So I’m trying to remember how to breathe. And that means lots of words.
Ana’laigh ~ Xun
If you’re chronically ill, you know as well as I do that we have a pretty pathetic excuse for “health” care in the US. I’m not even sure it does enough to be called a decent example of “sick care”. I don’t know how to fix it, but I do know the system is broken. Preventative care is barely enough….IF you have health insurance at all. If something catastrophic happens, they’ll rush you into surgery, put you back together, and often leave you with bills that would bankrupt most Americans.
I’m just really frustrated right now because I’m in the middle of something and I can’t seem to get anyone in the medical profession to care enough to understand what it’s like to be on this side of the table. I was journaling last night, as I do most nights to get some of the words out of my head (being a writer means you write all the time, even if it’s just the noise in your head that day), and I came up with three reasons “health” care sucks in the US and I thought….oh what a good blog idea! (And yes, I keep using quotation marks around health in relation to care because it’s crap.)
The first problem is that the vast majority of patients that see the same doctors (specialists) I do are morons. I have a pain specialist, which means they see a lot of people that are just addicts and drug seekers, so when someone like me with actual pain comes in, I have alotta hoops to jump through. Not because I’ve done something wrong, but because so many other people have.
The second problem we have in the greed that is the health insurance industry. Somewhere along the way, lawmakers (lobbyists) decided the insurance had all the power, so our doctors aren’t making choices for our benefit anymore, the insurance company is. I am incredibly fortunate to have insurance that doesn’t require me paying an arm and a leg for every office visit, test, or prescription. But the flip side of that is the doctors immediately see who my insurer is and write me off without adequate treatment because they’re not going to get the outrageous fees they’re trying to charge.
Finally, and the biggest problem I’m currently facing, is that the doctors do not know, or they somehow forget, what it’s like to be on this side of the table. They forget the patient is a person, not a medical records number. This is my life. You see me for 20 minutes (if I’m lucky) and then you go about with your day, but I go home and live my life with this reality. They forget that. Your diagnosis is my everyday. I want to scream at the indifference “You are LUCKY. You are FORTUNATE enough not to have to accommodate this issue, these symptoms, this diagnosis every single day. That’s the only difference between you and I.”
I have fallen down my stairs three (3!) times in less than 18 months, so my neurologist ordered a brain MRI. It came back with an abnormality (more on that in the next blog….you’ll see why). So I was then sent for another brain MRI, but this time with contrast and with a specific protocol ( I A C protocol….and if you know what that is, clearly you’re facing some serious challenges too).
I had the scan last Friday, so when I called yesterday to get my test results and got told my neurologist “is on VACATION for two weeks and would get back to me when she returns” I blew up. WHAT the hell?! I explained to the girl on the phone that I understood the doctor is on vacation, and I understand this is just work to you, but this is my LIFE. This is a major event in my life. I WANT MY TEST RESULTS! She blew me off, which just goes to prove my third point, so I put in a call to my primary care doc, explained everything, and asked her to pull the results for me. So I’m waiting on that.
WHY can’t we get anyone in the medical industry to care?? I understand they deal with a higher than average number of idiots, I do, but why can you not see that’s not me when I walk in? I’m an educated woman, and I’m an informed patient. And odds are, I know more about my condition that you do. From reputable sources. I know better than to use webMD or ithurts.com (kidding…that’s not a real thing….I don’t think). If I’m researching something, I read research from Mayo, Hopkins, Cleveland Clinic, and in this case specific sites and foundations that study and support my condition.
I am so frustrated right now. I need answers. I need to know what I’m supposed to do. Am I planning for surgery?
This body sucks. I want a refund.
This has been a year of change. A LOT of change. I swear I blinked and suddenly I’ve moved 3 times, and two of my kids grew up and ran off. Grey hair has appeared, as well as a few lines around my eyes that I don’t remember having. Hubs has retired from the Navy, and everything feels different.
I think we pick a spot in our lives, for some of us it may be in high school, college, or maybe somewhere in our twenties, that we see ourselves in. There’s a moment in time that we see every time we look in the mirror. From that moment on, that’s who we see in the mirror. It may be tied to a life changing event, a period in time when one might think they’ve found themselves, or maybe the moment we found ourselves and happiness.
For me I think it bounces between when I was in my early twenties and identified as a dancer (in between being a wife or a mom), but really, I see me as thirty-something. I really found myself in my thirties. It wasn’t the easiest decade I’ve ever survived, and it all happened after the defining moment in my life that made my before and after, but I found myself as a woman, more than just being a wife, mother, daughter, or friend.
What about you? Have you had major changes in recent memory? Was it hard to adjust? Can you throw me down a rope?
In 30 days my husband will have his Retirement Ceremony celebrating his 24 years of service and “piping him ashore”. Of those 24 years, I have been a part of more than 15 of them. I have survived deployments, deaths, tax audits, lightning actually hitting my house, losing his dad, losing my dad, losing a child, almost losing my life because of pregnancy complications, a very high risk pregnancy, having my husband on another continent when 9/11 happened, moving …wait lemme think….8? times in 15 years, mandatory fun command events, and all of the general life wtfwasthat that typically happens in your 20’s and 30’s.
I’ve taken kids to the ER for staples in their head (trampoline accident), stitches in their forehead (don’t run through hardwood floors on wet feet), a broken collar bone (don’t run up a cement wall right next to a steel pole), bronchitis, infections, and other assorted kid ickies. I’ve been in the ER more times than I can count. I’ve had 5 surgeries, including a friggin hip replacement and recovered from almost all of them without my husband there because he had to go save some other part of the planet.
Two of my kids have graduated and moved out on their own, one off to begin his own Navy career . I’ve lost friends and made friends. My kids have lost friends and made lifelong friends. They’ve had to put up with more than I ever wanted them to, but they’ve also learned they’re stronger than they thought they were.
We have survived an entire Navy career, and I did a great deal of it in heels.
Send Xanax. And maybe some cute shoes.
I haven’t been blogging as much lately. An awful lot has happened in the last year and some of it I’m still processing and I tend to do that in my journals as opposed to online, but I will post my yearly take on VD…Valentine’s Day…or venereal disease, which you can get from spending your Valentine’s Day with the wrong person .
The kidlet, in her ever present mindset of wanting to learn about the world around her, and us in our homeschooling philosophy, allow her to learn about history as it happens and the days we celebrate. We learned about MLK on his day, and Lincoln on his birthday the other day. December 7th we watched videos on FDR’s speech on Pearl Harbor, the infamous “Day of Infamy” speech.
So today she wanted to know why we celebrate St. Valentine’s Day and who was this guy anyway?
Unfortunately beating the living crap out of this guy and stoning him doesn’t work and he’s still alive, so he then gets sentenced to be beheaded on February 14th. The Christians don’t like this and the Pope declares Valentine a martyr upon his execution because of his work in aiding Christians and marrying them during the Roman Empire. Information leads us to believe Valentine was executed and martyred in 269 or 270 AD. In 496 AD Pope Gelasius marked February 14th as a celebration in honor of his martyrdom.