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(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.
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
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.
- 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.
- 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.)
- 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.
So…..Christmas is just 8 days away….
…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…
…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.
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!!
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.
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?
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!
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.
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.
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
Four years ago, within 30 days…
We signed the contract to have my house built, my dog died, and I was diagnosed with what ended up being an inoperable brain tumor.
I’m now sitting in the house I designed and we have just painted the downstairs bathroom, put new curtains up in the office, and gotten new (to us) living room furniture! Three years into living in said house, we’ve been slowly working our way through painting rooms, and fixing up stuff that we’ve shlepped around from duty station to duty station. This summer we’re planning on painting my daughter’s room and the spare room, and painting her desk as we move some of the furniture around upstairs.
My puppers is on my mantle in her pretty little oak urn with her collar around it, and someday we’ll plant her ashes into a tree in the yard.
And my tumor is still there, still inoperable, and still the same size and shape. It’s still a journey, but I am mostly stable.
I wrote this a couple of weeks ago, then set it aside for the Great-FreakTHEEFFOUTTTTT of 2018 when my pharmacy miscounted my long acting pain meds and I freaked the FUCK out because I had visions of the pharmacy to tell me to figure it out, my pain docs to tell me to keep better track of my scripts, and no pain meds = no Xun. It wasn’t a great 12 hours and I realized how close I am to the line of not deciding to live in chronic pain.
It was solved quickly and relatively easily….moving on….
I’ve been thinking about how much I blog. It’s not as often right now. I started a blog back in 2009ish? It’s gone through some changes and at least one major move from one platform to another. The last four years have focused more on the tumor near my brain stem. It’s ….. stable? Mostly. The tumor is the same size and shape as far as we know. But the effects of said tumor have progressed. I have dysphasia, confirmed via swallow study. (kind of a weird thing to go through) Aphasia when I completely lose words in the middle of sentences. Those may be connected to absence seizures. But I find I forget names of things, people, places….it’s easily the most frustrating thing about my current existence. (I spend a lot of time muttering to myself “I’m a frickin *writer*, I NEED words!!”)
I’m rambling but basically it’s just thoughts about where I’m at right now. I’m medically stable. No more turning my life upside down and moving every year. No more waiting for orders or duty stations. I don’t fight with…well, anybody anymore. There’s just not the fight in me.
Right now, my life is my kid’s school and theatre group keeping me busy, and now that she’s on summer break, I’m just juggling house, kitties, her activities, and my mother coming for 10 days. My doctor appointments pick back up next month. I had a nerve study done of my left arm because I was having pain in my ulnar nerve and numb spots on the back on my hand, my index finger, and my thumb. In the ENS they tested motor nerves and there’s something going on in my forearm, so I asked them to send the report to my neurologist and I see her again July 30th.
Right now, my life is fairly stable. June 23rd was the 6th anniversary of my Dad’s passing.
My kid keeps me busy. I probably don’t blog more often because I don’t think I’m very exciting right now.
But I did have a really vivid dream the other night that I’m thinking about writing about. It made me miss someone…..but it would be a great movie…
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.
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
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.
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!
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.
Grey’s Anatomy: S6 ; E2 “Goodbye”
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
I get really quiet when I’m going through something. Usually when my physical pain is climbing or my stress levels are raised…..or life starts kicking back, I’ll write less. I don’t even journal as much as I know I should. Writing creates a pathway for me to find my way through the pain…..well, most of the time. I know I should write more, but I guess it’s a defense mechanism not to. But the positive side is when I do start writing again, I know I’m finding my way back.
The last week in particular has been pretty stressful. My SO is on some crazy business trip to somewhere to do something. The details are fuzzy and the leaving was mostly just 24 hours of whattheactualfuck, and then he was on a plane. I have a pretty general idea of where he is and when he could return, but in the interim, I’m dealing with all of….well, this…..by myself.
The Parkland shooting happened on February 14 (as most of us know). What you may not know is that by February 16, we saw two boys arrested for threatening to shoot up my daughter’s school. On the heel of these incidents I saw my daughter, her friends, and my friend’s daughters say things like “I’m wearing my running shoes today (instead of my cute shoes) in case we have a shooting” ; “Mom, remember what I’m wearing today in case my head get blown off”; “If I hear shots I can jump out that window and run away from school property”. Yes, I heard these all said. No, they weren’t trying to be funny or smartasses. Or waaaayyy too irreverent. This is their reality. They’re scared. And now they’ve had enough. On March 14, my daughter wanted permission to participate in the walkout. Of course I said yes. They’re standing up, and speaking out. They deserve to be seen and heard.
SIX DAYS later, on March 20 there was a shooting at Great Mills High School. Every school in the county was immediately locked down, and the GMHS students were transported to LHS (my daughter’s school) to be reunified with their families. The shooting was just before 8 am, at the “other” high school, but everything about that day went sideways. LHS was safely on lockdown, but classes were moved around and schedules changed to accomodate for the 1400+ students coming to this school.
Kids from LHS were signed out by their families so they could wait with their parents for family and friends that would be coming from GMHS. It was a little busy, but it was handled with amazing ability and compassion from all of the teachers and staff, the students, and the first responders. Somehow, we made it through that day.
The next day Winter Storm Toby hit the East Coast, and my kid and I hung out at home and watched several inches of snow fall. It felt like the universe gave us a minute to breathe.
By Thursday, school started back up for LHS (Great Mills will be back April 2, after Spring Break). And on Friday I got up at 4 am to drive my kids over to meet her school’s tour bus for the Theatre Group’s planned trip to NYC for the weekend!
So….to sum up my week: Monday, normal; Tuesday, school shooting; Wednesday, snowmaggedon; Thursday, 2-hour delay for school, otherwise normal day w/ play rehearsal after school, Friday, @ the school at 4:45am to meet the bus for the trip to NYC!!
Saturday: March for Our Lives Marches happening in 800+ cities in the US and around the world. I’m proud of these kids, and I’m supporting the effort 100%!
I’m dealing with a lot by myself right now, but I’m dealing! Which means trying to be protective without throwing a fuckit bag into my car and driving for my mom’s house in California. I’m dealing with it…..tearing up at the news, but trying to be strong.
Until I logged into my FB tonight while watching one of my favorite movies (Love & Other Drugs….seriously, it takes a look at life with a chronic, progressive , incurable illness, and tells us we are not alone. Watch it! 😉 )
The first post that popped up was a friend who lives here, who went through the fear and hurt this week, who has friends at GMHS, who gets what this is like going through this with your high schoolers. They might be taller than you, and (in her case) getting ready to leave for collage, but they are still your babies!
To borrow a few of her words, she wrote “From the time my children were handed to me, my purpose in life has been to make sure they are safe.” She talks about car seats, and holding their hands to cross the street……and monster spray.
That’s how far I got before I just sat down and finally cried out the week’s fear, and hurt, and anger, and uncertainty. I set down my tablet, and I just cried out everything I’ve been needing to cry out for days….maybe even weeks. I sobbed, and I allowed myself to cry however I needed to, for as long as I needed to. And then as I shlepted myself over to the powder room to get more tissues, I realized my whole face was wet, as was one of my pj pants thighs. So, I sat there, and tried to breathe and come back to center and I realized S’s post said “monster spray” and that’s what opened the gates.
I have done everything in my power to keep my babies safe. Cribs, playpens, carseats, bed rails,….and monster spray. K and D, my two oldest, are 18 months apart. So if one or the other had a scary dream, or was worried about monsters under the bed, we created ” Monster Spray”. Pretty little pump spray bottle, looked pretty, smelled good. No monster guarantee.
It took me a little bit longer, and a couple of tougher experiences (stories for another time) for me to finally have my little Bug. She’s my Rainbow Baby, and her big sister is as protective over her as any momma you ever met!
But after this week, I couldn’t scare it away with monster spray. I couldn’t shield her from it, or change it. She marched last week. She saw it happen. She’s speaking out this week from New York. She blanketed all of her social media with #ENOUGH #enoughisenough #neveragain
I’m proud of her. I agree. NEVER AGAIN.
All of the fear and stress……..I guess I just needed to cry it out. She’s safe, we’re okay. But OH! my Marvel!!! It has been hard!
**deep, deep breath** (This is why I have “ana’laigh” tattooed on my left forearm, Gaelic for breathe.)
And tell the people in your life you love them!! ❤ ~ xunxun
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.
That. IS. MY. KID’S. HIGH. SCHOOL.
That post yesterday? That fear? It’s real.
ENOUGH IS ENOUGH.
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?
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.
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!)
Tomorrow is day 7! Suggestions? Inspirations? Anything you hope to see?
❤ ~ Xun
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