Category Archives: music

Music is Pain Relief

I typically put up a post on my blog’s FB page every Monday with whatever is stuck in my head that week and I always hashtag it #MusicMonday and #musicispainrelief . Because researchers have shown that listening to music can release endorphins and relieve pain.

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Grey’s Anatomy, season 2, episode 5 “Bring the Pain”. Some pain management ideas are….more controversial. I’m just advocating for music.

…And if you know anything about me or have read more than three blogs, you know I live and die by my music. I always have something stuck in my head and Heaven help the person that might get a hold of my Spotify and wonder exactly how many people share the account. Spoiler: it’s just me, but I have everything from the Hamilton soundtrack to Lady Gaga to Eminem to Disturbed….to the Saturday Night Fever soundtrack…P!nk, Queen, Marilyn Manson, Tesla, Five Finger Death Punch, Supertramp, Bleachers, Melissa Etheridge…. I can do this all day.

Anyway…

The youngest and I went to go see A Star is Born last Friday and I cried. I cried for the last half of the movie. I cried for a few different reasons, some of which I don’t talk about. I’m getting off topic. My point is I’ve had this stuck in my head for four days already and music is pain relief.

Happy Music Monday! ❤ ~ Xun

What We Don’t Say….

I was a Psych major in college. Have I told you that before? Doesn’t matter…anyway, I actually switched majors from Pharmacology to Psych because I wanted to understand the human mind. All I learned is I’d make a terrible counselor. And birth order.

My point is I chose to study psychology because I knew what it felt like to be so depressed you just wanted to die. And I understood what it felt like to have a full blown panic attack in the ER. As in an ABG (arterial blood gas) being drawn mid panic attack and showing that my O2 and CO2 levels were reversed.

I went through some serious depression and (now I know it was) PTSD after a major medical crisis in 2001. I lost a child and almost died from sepsis. The I went home and slept with the lights on for 6 months and had nightmares for close to 2 years.

But none of this is talked about much. I don’t say I still have nightmares. I don’t talk about how close to suicidal I am if they suddenly cut off my meds. I don’t talk about loneliness or abandonment issues. I don’t say anything about the reason I have so many tattoos on my forearms.

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Everyone I know feels a little broken sometimes. How many people do you know that feel self-doubt? Or fear or not being good enough? Have you ever cried yourself to sleep? Is anyone else telling you it would be okay if you did?

One of my favorite people shows it better than I can….check out Swoop. ❤

There are a lot of things we don’t say. But you’re not alone. And it’s okay if you’re not okay right now.

Even More Updates!!

April was nuts. I’m still trying to remember all the things and the stuff and the sharing…

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I live off my desk calendar

Rehearsals, a concert, prom, tech week….

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P!nk was amay.ZING!! And worth every penny for the not-exactly inexpensive tickets! Seeing her was bucket list stuff!

Four weeks of rehearsals for the kid because her school was (is …we have 2 more shows this weekend, and I’m finishing the editing of this post on Saturday afternoon) performing Anything Goes.

 

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Rehearsals were 4-5 days a week, weekends were set builds, and one weekend was a dance intensive workshop to work on choreography. The kids have worked their butts off and it shows! They have put together an incredible show!

We got through the ….um, “stupid” business trip and my husband got back on April 4th. We jumped right into April insanity; meaning 5-6 days a week of rehearsals, me interrupting rehearsals on April 17th to drive up to DC to see my favorite show EVAR, prom on April 21, and then right into tech week. “Tech week” means full dress rehearsals and long days the last week of April. I volunteered food and serving the cast and crew, the band, the faculty, and the parents and volunteers two out of the three days.

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Social Xunnie ; being helpful & feeding teenagers Photo: Ramon Tuazon

Watching how many parents and teachers step up and volunteer to support the show is inspiring. They’re working HARD.

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Seriously, I live and die by my desk calendar. Tech week

In the middle of tech week, we HAD to get tickets to squeeze in seeing Infinity War because we’re a household of hopeless geeks and I flat out told my kid I have to see it or stay off the internet until we do! Fortunately, we we able to find tickets for an 8 pm showing on Thursday night. (& we squeezed in a matinee on Saturday)

No spoilers. Don’t @ me. I’ve seen it twice so far. I won’t ruin anything for anyone else. 😉
But we will be seeing it again. Apparently we’re masochists.

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spoiler free commentary

Finally Friday, April 27 was opening night!

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I am so proud of these kids. And I can’t even begin to describe how grateful I am for the teachers, staff, directors, and parent volunteers giving up all the time and work for this production. The kids have worked so hard and *my* kid is ecstatic about the chance to perform and all the support.  This is me gushing because this is a new chapter for my youngest and it’s awesome to see her doing the next thing and loving the experience and support she gets.

We’re closing out a long and busy couple of months. One three-week-long business trip, one snowstorm, 4+ weeks of rehearsals, three gun incidences in our schools, one trip to New York, one P!nk concert, six high school musical performances, and one blood draw (yesterday) for new Cobalt and Chromium levels for my ortho surgeon when I see him again in just over 2 weeks.

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Gentle hugs, a couple of deep breaths, and and 2000 words later it’s time to move forward. May is Brain Tumor Awareness Month! #gogreyinmay

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❤ ~ Xun

 

Overdue Updates; Part II

So, in the six weeks I haven’t sat down to share with the group, there’s been a lot of crazy stuff (see previous post) and a lot of really awesome stuff. And… well, really just A LOT.

I went over the big, hard stuff already (and as I’m writing this, everything hurts and I’m really sore for some bizarre reason today), but I have some insanely cool stuff to share too!

(consulting calendar & notes)…
so…in addition to the stuff that put us on the national news in the last 2 months, we’ve had a bunch of good stuff and busy stuff and…well, I’ll just try to get on with it shall I?

My youngest got the chance to go on a school trip to New York City in March! They got on the bus at beforeGodgotup o’clock on March 23…

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The theatre group spent the weekend in NYC and got to see Waitress, Hello, Dolly! and Kinky Boots! They also had a workshop on stage combat techniques, visited Central park, Times Square, and Little Italy. It was a crazy whirlwind weekend and I am so grateful that the school got to pull it off and we could send our kid to do it!

My husband was sent out of the country on a work trip in March so I was juggling school shooting news, kid trip, and a snowstorm by myself for a bit. Oh! And updates with pain doc and neuro. I’m stable (mostly) and getting blood drawn this week to check cobalt and chromium levels before I see ortho surgeon again on May 22. In the midst of the insanity of the last 2 months, at least medically I’m stable and managing.

The most interesting things lately are just the dysphasia occasionally deciding it wants to flare (but I’m learning to manage it…did you know if you tuck your chin it helps when swallowing?) and my hip pops occasionally but I haven’t fallen and I am stable when walking. My rule is “I can go far or I can go fast … pick one”.
But medically, at least, I’m not very interesting lately. For now.

The best and coolest thing this year is I got to go see P!nk!!! This was bucket-list stuff and she is one of my favorite people on the planet. I even have lyrics from one of her songs as a tattoo…

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I got to take my daughters and see her April 17th in DC…

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It was amazing and she’s incredible! She opened the show hanging from the chandelier!!

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I tried to remember the songs she did…

Get the Party Started
Beautiful Trauma
Just Like a Pill
Who Knew
Revenge (which included a giant inflatable Eminem)
Just a Girl (No Doubt cover)/Funhouse
Teen Spirit (Nirvana cover)
Secrets
Try
Just Give me a Reason
I’m Not Dead
Just like Fire

…which was INCREDIBLE!! We were close enough to feel the heat from the fire effects…

What About Us
Perfect (see previously mentioned tat)
Raise Your Glass
So What

she literally flew across the entire arena!!

and she finished with Glitter in the Air.

It was an amazing show and the best concert I’ve ever been to and how much do I love the fact that my youngest’s first concert was P!nk??!!

April has been insanely busy, 4 solid weeks of rehearsals, tech week (aka: parents bringing in food and doing set builds because the kids are working until 8 pm), the kiddo’s first major high school musical production, prom, P!nk’s concert, and the opening of Infinity War because we’re a household of Marvel geeks.

Looks like I need to actually write up a third update!

 

Check Yourself

Like the rest of the US I have been watching the news over the past 5 or 6 days and trying to figure out what to say….or do…or think. 17 more dead. This is not okay.

I sat here this morning catching up on news and social media and I came across a friend of mine’s Facebook post about sending her daughter off to school this morning. It was just a quick blurb inviting thought by sharing that her daughter said “remember what I’m wearing in case you have to identify me.”

I had tears in my eyes and I had to catch my breath. Her daughter goes to the same high school mine does.

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I live about 9 miles or about 15 minutes from my daughter’s high school because we live in a pretty rural county It’s middle America. (Seriously google it….”Middle Earth” pops on my zip code)
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There was an incident several years ago at this school. Yes, even all the way out here, we had a “threat”. I didn’t have any kids in the school at the time, but I watched the news coverage as reports of a handgun in a student’s backpack prompted a lockdown of the high school, the tech center, and the middle school because they are all essentially one campus. The parents could not get to their kids and gathered at the county fair grounds across the street from the school.

Tears in my eyes as I tried to imagine NOT being able to reach my child and protect them. Anybody that knows me knows I am a Mama Bear. DO NOT mess with my kid. Do not threaten my kid. Do not get between me and my kid. I will hurt you.
My oldest was in a car accident almost 2 years ago. I got the phone call and pulled up to the accident scene in less than 10 minutes. (To be fair it was about 2? 3? miles away)

But I have never forgotten what that felt like to watch these parents stuck on the other side of a 4 lane highway (I use highway loosely….main road?) unable to go get their kid in the middle of a lock down.

So when I read S’s post this morning, I stopped. Time stopped. I couldn’t breathe. Because that is a horrible truth. That is an unthinkable truth.

This has to stop. #NeverAgain

I’m watching my country, my family, my friends, my acquaintances, people I care very much about, and people I’ve never met argue over opinions, fault, policies. This is insane.

Do you get that?! This is crazy. We are supposed to be a First World Nation. We are supposed to be The American Dream. If you work hard enough you can have anything, remember that?? Milk and honey and opportunities.
But we have more gun violence, more deaths, more fear and threats than many Third World Nations. People are afraid to visit the US because they’re afraid they will be shot like in the Wild West.

But Xun….2nd Amendments? Individual rights? Who are YOU to tell me what I can and can’t do?!

To that I say, Check Your Privilege.

I thought about this a lot over the last few days. I am white, middle America, middle income, living in a house we built 3 1/2 years ago, standing in a shower in a bathroom I designed, crying this morning because time stopped for me as I thought about what to say or how to write about this. Suddenly  it was 2 years ago when I lost my sister, or 5 1/2 years ago when I lost my Dad and I was standing in the shower trying to figure out how to live in a world without them.

Because 17 funerals are being planned right now. Do you get that? 17 people that did nothing more than get up and go to work or to school last Wednesday, that didn’t know the shooter from Adam, are now gone.

BUT…

I am watching the next generation, the survivors, stand up and say NO MORE….

Emma González is amazing and brave and strong. And I am watching the news of her and the other students, the other “kids”, organizing a fight for #NeverAgain. Speeches, walk outs, marches. These kids and their community are fighting for everyone else. No more mass shootings. More deaths. No more sense acts of too many people dying in one day for what?
NO MORE.

 

Marjory Stoneman Douglas High School Students 

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I debated what to title this post. Because I’m watching the news and the debates on social media. What do you say? How do you talk about it? It’s been almost 19 years since Columbine and can you say anything has changed?

17 funerals, memorials, celebrations of life being planned. 17 people gone. 17 more gone. In an affluent suburb in Anytown, USA.

So check yourself. Check your privilege. But for the Grace of God go I.

 

 

7 Days, 7 Photos; Day 6

Hello Spoonies! I won’t say happy Monday because….well, does anybody like Mondays? On my Facebook page for the blog I try to remember to do “Music Mondays” because 1) any reason to listen to music is a good one! and 2) music helps reduce pain (and it makes a fabulous painscape!)

Today’s Photo:

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Tomorrow is day 7! Suggestions? Inspirations? Anything you hope to see?

❤ ~ Xun

 

7 Days, 7 Photos; Day 4

Happy Saturday! I love Saturday. It’s my favorite day of the week! I can be lazy and snuggle back under the covers just a little longer, or we can choose to go do something fun on a family adventure. Renn Fest season just ended for us and we always try to go at least twice during the 8 or 9 weekend run.

Movie nights, museum visits, trips up to The Kennedy Center. Saturdays usually have something good!

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See you tomorrow for day 5! ❤ ~ xun

What About….

Did you know P!nk has a new album out? Yes? No? Xun, what does this have to do with anything? I love Pink. She’s a better, badass, outspoken version of who I want to be. I have lyrics from one of her songs tattooed on me…

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…because I tend to be pretty self destructive and I want to give better words, better directive, better inspiration to my daughters. So I try to teach them, and I try to live the words… “Change the voices in your head, make them like you instead”.

Have you ever listened to the way you talk to yourself? Women, it seems, tend to be pretty unkind to themselves. Would you let someone say something you tell yourself to your loved one? Your mom? Your daughter? Your best friend?

My point is I have been listening to Pink’s new album on repeat because I woke up with What About Us stuck in my head.

It feels like there’s always so much going on. Wildfires, threats of war, natural disasters. How can you breathe when the world gives you so many things to dodge and worry about? I have family and friends in Northern California too close to the fires right now and I hate how helpless I feel. But I know that they are all staying on top of the news and keeping tabs on each other…
“You good? No evacuation orders?
“Nope, we’re good here. You?”
“Yup. Good so far here too.”
“Okie dokie….stay inside. Can’t breathe out there.”

My mom, my son, my uncle….I’m worried and I wish I could just put them in a bubble and bring them here where it’s been raining for the last couple of days. Just long enough to be safe…

Maybe that’s why I woke up with another black eye today. That’s the hidden truth of chronic invisible illness. What you see is not my reality.

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The picture on the left is me just out of the shower, no make-up, half way between what the rest of the world sees and what nobody sees. Dark line under my left eye, and something that almost looks like a bruise on my left cheekbone. The picture on the right is hair and make up done and what I show the rest of the world.

One of the biggest reasons I think “invisible illness” is invisible is because on the days that the flares, the pain, the struggle is the highest, we disappear. I know I do. If my pain levels are higher than I can handle I tend to go off line. No social media, no writing, no phone calls, no connections. And call it vanity, but I definitely don’t leave the house if I look like crap. In fact, anyone that knows me knows I almost never leave my house without my hair and makeup done.

Just because you don’t see the struggle, the pain, the fear…doesn’t mean it’s not there.

What about us?
What about all the times you said you had the answers?
What about us?
What about all the broken happy ever afters?
What about us?
What about all the plans that ended in disaster?
What about love? What about trust?
What about us? ~ P!nk

 

If I Could Close My Eyes….

June and July are funny months in the Xunnie household. There’s always the changing of the seasons, graduations, etc ; but we also have the anniversary of my Dad’s death coming up (06/23), what would have been his birthday (07/06), and the anniversary of what I call My Line in the Sand(07/17).

And now, three years into this, we have the anniversary of my diagnonsense. My brain tumor was found because I started falling down the stairs as some kind of a hobby and I complained to my pain docs about more headaches, so she wrote me a referral to a neurosurgeon who ordered the first MRI. I then saw who has become my steady spot in all of this, my neurologist, who then made a face at me and ordered a second scan. And then it was confirmed on June 20, and the next thing I knew I was headed up to Georgetown for half my Summer.

Yes, THE Georgetown hospital. And the coolest thing (is there is such a thing)? My “team” included the HEAD of Neurosurgery and the HEAD of Radiation Oncology. I don’t know how I got so lucky, but I must be an interesting case and I’m grateful for it. But yeah, that was a tough Summer. My son was deployed at the time, so I couldn’t tell him all hell had broken loose and inside of 30 days we signed a contract to have our house built, my dog died, and I got diagnonsensed.

June 23, 2012 my Dad lost his fight with cancer and June 20, 2014 I got diagnosed with a brain tumor.

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The point of all of this is:

  1. I did, in fact, get this year’s results and the tumor is “stable with no change in size”.
  2. I realized today as I was telling my oldest daughter a story about the time my Dad came to Michigan and they didn’t know what to make of him that I have all these images and memories that my kids don’t get to see the way I did. They’ve heard the stories, but they were so little, they don’t remember.

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The story I was telling my daughter was: Grandpa was so dark skinned and we’re all fair, blue-eyed, etc so when people see my kids run up yelling “Grandpa! grandpa!” they don’t know what to think. When he visited San Diego, they thought he was Mexican. When he went to Egypt (for work) they thought he was Egyptian. But in Michigan, USA, this lady could not figure out what was going on. (It sounds terribly racist, but when you see his reaction, it’s just funny!) So, as she’s following us through the grocery store and staring, he turns to me and says “if she doesn’t stop it, I’m gonna run over there and kiss her!”

No, he didn’t take himself too seriously.

My daughter smiled and said “I’ve always heard the stories, but I don’t remember….”. All I could think after she went to do her thing for the rest of today and as I’ve gone through my day was I wish I could close my eyes and show them.

Buzzfeed famously has all these ridiculous “What Superpower Should You Have?” or “If You Were in the Marvel Universe, Who Would You Be?” quizzes and lists, but if I had a superpower, I’d want to be able to close my eyes, hold your hands, and show you a memory. I have all these amazing memories and with the 5th anniversary of his loss coming up, I’ll write another blog with some of those. But, God!, what I wouldn’t give to be able to show you.

Hear the music, feel the wind, feel the joy, see the laughter. How much would you really love to be able to do that?

Do You Know What YOUR Brain Looks Like?

I have been terrible with up dates, I know.

“hey Xun….whatcha doin? How’s the brain? Seizures? What’s the little fuuuuhhhnny thing doing in there anyway?”

Well, What I DO know is that

Percival is still hanging around. I have images from this year’s scan that were done on Wednesday, June 7.

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Good news(ish): He IS still there and not like the size of a grapefruit, and if he’s grown, it’s not much. At least I don’t think so….

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Xunnie, a deviated septum, Percival (the kid loves this one with the eyeballs….)

So, not a lot to report on just yet. But I do think I have a demon in my brain….

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Should I be worried? Anybody got any Holy Water hanging around I could maybe borrow for an experiment? =D (Should we name the demon?)

I am hoping to get the report for this MRI in the next few days. I did explain that I was waking up feeling like the bed was shaking a couple of times, and that I had managed to scratch my face on in my sleep. Dysphasia ruled neurologic in origin, aphasia as well, EEG better than the last one, minor changes to my meds.

So….yeah, updates on Percival and me in a couple of days hopefully.  Until then…..
we start with what’s been stuck in my head for 3 days….

Along with stuff in the back of my head, on my playlists, haunting me….

 

There are a lot of memories intertwined with allllllll of the music on my phone, my hard drive, and hell even still the CDs I shepp around!

Xun = Music, Music IS Xun.