Tag Archives: social media

Oh Shit.

The last week has not been easy for me. I watch as the country gets torn apart from the latest massacre. The kids are going to speak to their state legislatures today, for which I am incredibly proud of them and in awe of their strength and their fight.
More are heading up into DC.

They’re not wrong. When is enough ENOUGH?!

I’ve watched the arguments and the fear spreading across the country. Family, and friends, and acquaintances, and perfect fucking strangers fighting like hell on the internet and in person. Demands for NO MORE DEATHS. Arguments for second amendment rights. The right and the left slinging nasty words at each other.

That’s not doing a damn thing and today….right now. I don’t give a fuck about the arguments anymore.

I didn’t sleep last night, and what sleep I got was punctuated by nightmares. And then I get this news today:
Students arrested for threat of mass violence.


WJLA Washington, DC ABC News


That post yesterday? That fear? It’s real.



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.


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)

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.


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?


Marjory Stoneman Douglas High School Students 


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:


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!


See you tomorrow for day 5! ❤ ~ xun

The Leibster Award

I wanted to say Thank You SO much to Carly from My Hearing Loss Story for nominating me for this award. I started blogging in 2009 or 2010 (I think it was) as a way to figure out the changes life with chronic illness and chronic pain brought. That was post hip replacement/possible Fibro diagnosis/just diagnosed with Hashimoto’s. So in a short frame of time a lot of my life changed. I finished my degree program, started homeschooling my youngest, and moved just about once a year there for a while.

I have made some new friends and learned so much through my little blogging group and finding people that understand and share their own changes and frustrations. It’s nice to know we’re not alone!


The rules for the Liebster Award:

  1. Acknowledge the blog that nominated you and display the award
  2. Give 11 random facts about yourself
  3. Nominate 11 blogs
  4. Notify them of the nomination
  5. Give them 11 questions to answer


11 Random Facts About Xun

  1. I am an only child.
  2. I have three kids of my own.
  3. I used to be a dancer, which is probably why my doctors missed hip dysplasia and all the symptoms that are now leading to an EDS diagnosis.
  4. I am a writer and had some of my work published in a book of poetry in 1999.
  5. I have 13 tattoos and 7 piercings.
  6. I was the first woman in my family to go to college since my great-grandmother.
  7. I have lived in 8 states.
  8. Alice in Wonderland is my favorite story (which lead to Xun in Wonderland!)
  9. My first car was a little ’78 Datsun that my best friend nicknamed “Corky”.
  10. My family goes to the Renaissance Festival every year and I have a full set of garb.
  11. Xunae was created from my WoW character and she’s my alter-ego (and the better, badass version of me!).

My questions from Carly:

  1. Where do you live? Maryland, USA (about 40 miles from Washington, DC)
  2. What is the most delicious food you have ever eaten? Oh! I could go on and on about this! I got to grow up in Hawaii and the food there is amazing!! But my favorite thing and the first thing that comes to mind is Vanilla Bean Creme Brulee.
  3. What do you like to do in your free time? Read (I *love* my OwlCrate subscription box!!), game (I play Diablo 3), watch movies…
  4. Three things you can’t live without… The cheesy answer? My kids. The truest answer? my meds. But the best answer in the spirit of this: books, being able to go be by the water when I need to think, and music.
  5. What is your guiltiest pleasure? cheesy rom coms
  6. Describe yourself in three words. brave, strong, creative
  7. What single quality do you most appreciate in people? honesty
  8. Say something nice about yourself… When I love someone, I love them completely and I will protect them with my life.
  9. Why did you start blogging? to connect with people, to share information, to have an outlet
  10. Something that makes you laugh? my kids, my cats, witty humor
  11. Something you want to achieve or do in the next 5 years. Get off my arse and get my book written.

My nominees for the Liebster Award are:

  1. Kara from Polishing Dookie
  2. Laura from RibbonRX
  3. Pamela from Living in a Limited World
  4. Wendy from Picnic With Ants
  5. Laura from Bipolar for Life
  6. Brittany from Shits & Giggles
  7. Kate from Kate is Rising
  8. Lisa from Life of an El Paso Woman
  9. Sheldon 
  10. Kayla from Intrestinal Fortitude
  11. Migraines From Hell 

My questions for my nominees:

  1. If you opened your eyes tomorrow in a whole new existence, what is the first thing you would do?
  2. What would you eat if you could only have one thing for an entire year?
  3. What’s your zodiac sign? Do you think it suits you?
  4. What is your perfect day?
  5. Who is your favorite author?
  6. Where would you like to visit?
  7. What is your favorite quote?
  8. What is your middle name?
  9. Savory or sweet?
  10. What is your favorite animal?
  11. Who do you look up to?


To my nominees: please don’t feel like you have to complete this – I took a couple of weeks before I wrote this up and it takes a bit of time. If you have the time and want to write this up, then please do (I would love to see the answers!), but if you don’t want to share too much info or you just don’t have the time (or energy!), please don’t feel pressured to. I just wanted to share and to let some of the people I read and have met through here how awesome I think they are!

*gentle hugs* and Happy Blogging! (And THANK YOU so much!!) ~ Xun

…Xunnie’s Need for Updates

And now for the other half of the title. I know I have been lax on updates, and I am sorry for that. Lazy, exhausted, overwhelmed. Sometimes there really isn’t much change to report on, and sometimes I have symptoms that I haven’t figured out yet so I don’t say anything.


But, I have had two different people, from two different parts of my life, note this week to me that they’re seeing me out and about and staying busy, and it got me to thinking that their surprise probably comes from “I have a brain tumor” and then not a lot of updates recently. And if you saw my instagram or my personal facebook page, you might think I have been pretty busy, out and about, and maybe even a little “better”?

Like most chronically ill people I only post pictures when I feel up to it, and I only go out on the days I’m doing okay. What you don’t see are the days it takes me most of the day to get a shower and get dressed, or the days I crawl back into bed because my head is hurting. And that’s my fault. I don’t share the hard stuff.

Even as I’m coming up on my third anniversary of my tumor diagnosis, I still have hair almost to my waist because I had radiation and not chemo. I still go to museums because that what we like to do. I post about going to the movies, but the movie theatre is only 10 minutes from my house, and that might be all I do that day. I get dressed and put on make-up because I feed the shallow, girly part of me. I don’t “look sick” because that scares people.

But I am having some symptoms that may indicate my tumor is progressing. I have dysphagia to deal with now. And moments that might just be aphasia or they might be absence seizures. I forget things or lose words way more often than I’d like to admit. And in the last few months I have had 3 episodes of “sleeping” but feeling like my bed was shaking, only to wake up to quiet at 3 or 4 am. Seizures? Muscle spasms? Dreams?

I’m not sure yet, but I see my neurologist on Monday, June 5, and it’s time for my brain MRI scans (with contrast….oh joy).


When I was diagnosed in July of 2014, my doctors believed that I have a meningioma or a shwanomma, which should be benign and slow growing. I had some pretty aggressive radiation treatments in August, 2014. So, by no I should be stable and moving towards scans every other year. But I haven’t stabilized yet, and my tumor is too close to my brain stem for surgery.

So, no, I haven’t been as good at updates and postings about life with and without a tumor as I wish I was, or as much as I should be. But it’s time for scans and updates, and I’ll get my act together. I promise! 😉

The World is a Little Emptier…

The dictionary defines grief as: “Keen mental suffering or distress over affliction of loss; sharp sorrow, painful regret.” As surgeons, as scientists, we’re taught to learn from and rely on books, on definitions, on definitives but in life, strict definitions rarely apply. In life, grief can look like a lot of things that bare little resemblance to sharp sorrow. ~ Meredith Grey, Grey’s Anatomy

My world feels a little quieter, a little emptier…..there’s something missing. Johnna‘s quick, slightly snarky challenging of the CDC on Facebook with her #DearCDC, pictures of ducks on her walks in New Mexico, her pictures of butter and chocolate cake. I didn’t ever meet her in person, but I feel her absence. It’s funny how our little blog family exists. It’s the kind of support that is absent for most of us in an everyday place, but it’s something very real even if we can’t touch it.


I usually just call them my blog buddies, but they’re close friends….some of them a branch of my family.

I’m probably not making a lot of sense to the people that didn’t spend today watching the video from Johnna’s sister or sharing memories in comments, but every time I think I can take a deep breath and set it down, I get a lump in my throat. I miss her. I remember we knew… I knew, and I’m reading that I wasn’t the only one.

Nobody heard from her after noon on January 24th,and only now are we sharing a memorial. I close my eyes, and I tell her I hope you know you were not alone, you were never alone.

We all made it through 2016, some just barely, and I feel like I’m just now catching my breath from Brenda’s loss. I feel this loss too. This hurts.

Grief sucks.

(I guess that’s the anger part of the 5 stages?)

March 8, 2017

The owner of this site is female and on strike in solidarity with The Women’s March and International Women’s Day.



“We ask justice, we ask equality, we ask that all the civil and political rights that belong to citizens of the United States, be guaranteed to us and our daughters forever.” ~ Susan B. Anthony


Just a quick post today, because I’m seeing a lot of emotion and fear floating around social media and the blogosphere today. Well……this week actually. And probably for some time to come.

America is reacting right now. The world is watching, and reacting too. Some good reactions, some bad reactions, and a lot of fear because we don’t yet know what’s to come. And with the way 2016 has been, it could really be frickin anything.

(For example, my pulmonologist telling me my brain tumor probably is going to kill me, but more like affect my ability to swallow so I’ll die by chocolate milk. But that’s another story, and I’ll post that blog soon.)

At any rate, back to my quick post.

I have raised my kids to believe that everyone matters. Their whole lives I have told them I don’t care who they choose to be, or be with. Because love is hard enough to find in this world.  Be kind, love one another, include others in your life. My kids don’t judge color, shape, size, religion, sexual preference, gender, or age. Love is love.

Don’t forget that.



Stuff…and Things

Mostly because it’s been a rough August, and a rough year. For a lot of us…

For my favorite Dookie fighter!!


And if you’re having a bad day, just remember…


Believe in a little magic….


…and find something that brings a smile to your face!

(And if you’re bored, my Tumblr has so cool stuff! I forget about it and then scroll back thru and find more treasures!)