Tag Archives: music

Ch-Ch-Ch-changes…..

Hey!
(Whaaaattt?! A post from Xun???)

I know I have not posted this year. I’ve been thinking about it and journaling and there are a couple of reasons, but mostly it’s just because this year has had so many changes.

One pain specialist clinic closed, so I moved to another and found out my previous providers would be joining the new practice so I’ve been in the middle of medication changes. How’s it going? Well, I’ve lost almost 10 pounds…
My new MRI this year showed that my brain tumor has grown. Not a lot, but it has decided to wake back up and do something. To borrow my neurologist’s words “it’s small, but it went from 3 by 5 to 4 by 6.” So what do we do? I don’t know. I had radiation and I’m not sure I’d even qualify for the treatment again. And not entirely sure I’d want to go through that again. Surgery is not an option, so we wait and we watch.

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Anyway, I’m starting to get off track. So what does that mean for this blog and this post? My plan is set to expire shortly and between my frustration with WP and my lack of posting lately, I think I’m going to go ahead and take this one down. My blog has been set to post to my tumblr whenever I posted, so there will be a version of my blog maintained there and I tend to be more active on my facebook page for this site, so please come check that out and like and follow me there! I usually post a few days a week and I always try to do a “Music Monday” post. Music is pain relief. 😉

Gentle hugs, take care, love you guys and hope to see you soon!!

❤ ~ Xun

Whatever by Godsmack

I’m just having a minute so I figured maybe I should write it out. My blog has always been a description of my life, and it’s not anonymous. That makes some things hard to describe or vent about because everything in my online life is connected to my life. Online I am Xun, but enough people in my real life know my online life so there isn’t the break some people might find in an anonymous blog.

Most of the blogs I follow are connected to the people I know or have come to know. I follow just a couple of blogs that are completely anonymous. The benefits are that when you’re blogging about an illness, or a big life change, people can put an idea (like living with the challenges of an inoperable brain tumor) to a person (yours truly). The good is that people can connect and realize they aren’t alone in the world as they struggle with moving, challenges, frustrations, or hospitalizations. The tough part is that when you’re not anonymous it’s hard to just vomit your frustrations into your keyboard and hit “publish”.

I’m just frustrated today because I got hit with a lot of emotion and negative energy for something I don’t feel I deserved to be dumped into my lap. Since my blog isn’t anonymous, I can’t really just throw all the details out there. And truthfully, that’s not really my style. I’m stoic to a fault way too often.

But I can say I understand why I’m as stoic as I am. Sometimes it takes 30 years to put all the pieces together.

And, as is my custom, I spent the day lost in music and decided to jump online and kill some zombies for an hour or two. What kid of music did I throw myself into today? Glad you asked? 😉

 

Music makes everything better!

I hope your Christmas (or Boxing Day, or just Tuesday) was awesome.

Happy Holidays everybody! (and I’m currently working on an end-of-the-year/ 2019 aspirations (I don’t do resolutions) post!)

I Have A LOT of Holly Jolly

It seems like I get pretty quiet when I mostly stable and this has been a really busy year in my household. And, inspired by all the Christmas music I have been listening to, I thought I’d sent out an update. I am much better at posting more often on the Facebook page, and if you’re interested in more of Xun’s life, I keep an active Instagram.

  1. I may or may not be moving the blog to a new site unless WP gets their ish together before August. Long story, capitalist ish, unnecessary pixels.
  2. Healthwise: I am mostly stable. Labs were good this year, neuro felt I was stable enough to skip my yearly MRI this last summer, and aside from dropping things like I get paid to do it and having days when the only thing I remember is how to get home, I’m doing pretty good. I even managed to get my neurologist to sign off on me asking my pain specialists if they can finally do some shots in C6 after 3 years. (Post tumor diagnonsense, Georgetown didn’t want them messing near the epidural space.)
  3. My son came home after 6 years so I have all 3 of my kids in the state again and between them, they keep me busy. (Although my youngest gets the honor of keeping me the most busy and angling for me to be one of the “alpha theatre moms” (her words, not mine) by next September…..ish.)

My son just got a job at a new Starbucks opening near us, my oldest daughter will be graduating from college in May as a Radiographer!!, and youngest keeps me busy because she’s a sophomore in chorus AND theatre and we just started spacers and appliances to get braces on in about 3 months. And she just got her permit.
(send vodka)

So…..Christmas is just 8 days away….

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…and my youngest has embraced this Holiday season to be HOLLY and JOLLY, not stressy and depressy. Good advice kid. For the first time in my life I have THREE (yes, 3!) Christmas trees in my house. We dug the first one out…

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…but that wasn’t the new one we got last year. (I told you I forget things. And yes, I have fake trees. I have cats.  😉)

So we moved it to the spot by the back door, because why not?! And got the new one out of the basement and put that one up in the living room.

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THEN the kid really wanted a tiny Christmas tree in her room because she’s 16 and usually she has Halloween decor in her room, and Maaaaoooooommmmm-I-really-need-it-pleeeeeaaassseee!!

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Side note: We have a rule in this house not to put up any Christmas decorations before December 2nd because we have three birthdays and Thanksgiving just before the holiday season hits. I was born 2 days before Thanksgiving and my husband was born on December 3rd, so we know what it’s like to get lost in the Christmas Crap (Xun info: that’s what I routinely refer to Holiday decorations as 😉 ) and my youngest’s birthday is December 1st, so anything Christmas goes up after her birthday.

This year we had tech week, the weekend of the Fall play, 2 birthdays, the Christmas Chorus Concert, the kid’s party, The Army/Navy game, and rounded it out with the Winter Cabaret fundraiser.

This year she turned 16 so it was a big deal! She had friends over and they listened to music, played games, watched How the Grinch Stole Christmas, and had all kinds of her favorite foods, followed by an ice cream sundae bar.

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Tech week is the last week before a show, dress rehearsals, last minute pushes and updates so the parents provide dinners. The three days of the Fall Play always seems to land on the same weekend as the youngest’s birthday, so we pushed her party to the following weekend.

In the middle of it all was my husband’s birthday, followed by the chorus concert ,then the kid’s party, then by the Army/Navy game (yes, that’s important!….. even if the offense didn’t bother to show up this year), then the Winter Cabaret.

All caught up? I’m relatively sure I have failed in clarifying or explaining something, and I’m even more sure I’ve forgotten something, but here we go.

So what kinds of resolutions do you have for the new year?

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I’m less about “resolutions” and more for aspirations or focus points. But I am seriously considering showing up to the DC Women’s March in January in my T-Rex costume!

Happy Holidays everybody!

 

 

 

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

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

 

Quotations, quotations!

I don’t participate in many challenges. I’ve gotten a couple of shout-outs and met some incredible people through running my blog for the last *cough* years, but I haven’t really been structured enough to post regularly or get involved in group projects. I write like I live: a mom of 3, retired-Navy wife, creative mess (with a brain tumor). There’s maybe a little structure or predictability, but you have to look for it. And I do better on my Facebook Page.

But when I saw Wendy share her Quotation Challenge, I thought I’d jump in the pool too. Wendy’s a pretty awesome chick with an incredible story and I’m happy to share a little cyberspace with her!

Here’s how this works:

1. Thank the person that nominated you.
(Wendy, thank you for sharing such a cool challenge!)

2. Write one quote each day for three consecutive days (3 quotes total).
(Imma do all 3 at once, but please feel free to share 3 posts, or just jump in too!)

3. Explain why the quote is meaningful for you.

4. Nominate three bloggers each day to participate in the challenge.
(Kara, Sheldon, Bee, Tiara, Laura, ….just a few people that come to mind)

Wendy did all three of her quotes in one day and in the midst of everything I’m juggling right now, I think I’ll do that too!

Here are just a few of my favorite quotes. (I love words and I could do this all day)

Those who were seen dancing were thought to be insane by those who could not hear the music. ~ Friedrich Nietzsche

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You don’t have to know me well to know a couple of things: music is air to me, and I’m a dancer. The body doesn’t cooperate very well anymore, but the soul still dances. I do a “Music Monday” post on my FB page because they’ve shown that music reduces pain and I love music. All music. Seriously, if you see my playlists in my phone, you wonder how many people share my music apps because I go from P!nk to Bleachers to In This Moment to Queen, Bowie, Hellyeah, Skylar Grey, Apocalypica, Eminem, Fleetwood Mac, to Andra Day. I’m not even sure that covers the breadth of all the music I listen to. But my text notification is DMX and my ringtone is Led Zeppelin right now so…yeah. Music = air.

 

 

Meddle not in the affairs of dragons, for thou art crunchy and good with ketchup.

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aka: mind ya business.
…and I’m a dork that owns 2 full sets of “garb” and goes to Renn Fest every year. The Maryland Renaissance Festival is pretty awesome and always runs from the end of August to the third week of October and we try to go at least twice every year. Our village focuses on Henry VIII and is set around 1529. Our family loves all things Renn Fest and we’re happy to be hopeless geeks!

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Lexie: Grief may be a thing we all have in common, but it looks different on everyone.
Mark: It isn’t just death we have to grieve. It’s life. It’s loss. It’s change.
Alex: And when we wonder why it has to suck so much sometimes, has to hurt so bad. The thing we gotta try to remember is that it can turn on a dime.
Izzie: That’s how you stay alive. When it hurts so much you can’t breathe, that’s how you survive.
Derek: By remembering that one day, somehow, impossibly, you won’t feel this way. It won’t hurt this much.
Bailey: Grief comes in its own time for everyone, in its own way.
Owen: So the best we can do, the best anyone can do, is try for honesty.
Meredith: The really crappy thing, the very worst part of grief is that you can’t control it.
Arizona: The best we can do is try to let ourselves feel it when it comes.
Callie: And let it go when we can.
Meredith: The very worst part is that the minute you think you’re past it, it starts all over again.
Cristina: And always, every time, it takes your breath away.
Meredith: There are five stages of grief. They look different on all of us, but there are always five.
Alex: Denial.
Derek: Anger.
Bailey: Bargaining.
Lexie: Depression.
Richard: Acceptance.
Grey’s Anatomy: S6 ; E2 “Goodbye”

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Meredith Grey is my spirit animal. She and I have so much in common. She’s the stronger, smarter, badass surgeon version of me. We’re both only children, with a father that bailed to start another family. My mother is still alive and doesn’t have Alzheimer’s, but it does run in my family and when I did my genetic profile, it showed an increased risk for me. We both have three kids. And we’re both dark and twisty.

I can’t even tell you how many times I have written this entire quote out through my journals. I watch Grey’s on Netflix like comfort food for my soul. It’s my favorite place to be. And when I’m working through grief, I always seem to come back to this one.

I have a couple of people that come to mind I’d love to nominate, but I don’t want to put anybody on the spot. But if you’d like to share, please tag me. I’d love to see what makes everyone else tick. Or if you just have a quote, a mantra, a Psalm….anything that means something to you and gets you through the tough stuff (or the awesome days!) and want to just share in the comments, please do!

 

(& in other news, I have a draft for the rest of the updates I’m writing. March and April were insane!! But I promise I’m gonna close out the (overdue) updates this week.)

❤ ~ 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

 

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