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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
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:
- Acknowledge the blog that nominated you and display the award
- Give 11 random facts about yourself
- Nominate 11 blogs
- Notify them of the nomination
- Give them 11 questions to answer
11 Random Facts About Xun
- I am an only child.
- I have three kids of my own.
- 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.
- I am a writer and had some of my work published in a book of poetry in 1999.
- I have 13 tattoos and 7 piercings.
- I was the first woman in my family to go to college since my great-grandmother.
- I have lived in 8 states.
- Alice in Wonderland is my favorite story (which lead to Xun in Wonderland!)
- My first car was a little ’78 Datsun that my best friend nicknamed “Corky”.
- My family goes to the Renaissance Festival every year and I have a full set of garb.
- Xunae was created from my WoW character and she’s my alter-ego (and the better, badass version of me!).
My questions from Carly:
- Where do you live? Maryland, USA (about 40 miles from Washington, DC)
- 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.
- What do you like to do in your free time? Read (I *love* my OwlCrate subscription box!!), game (I play Diablo 3), watch movies…
- 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.
- What is your guiltiest pleasure? cheesy rom coms
- Describe yourself in three words. brave, strong, creative
- What single quality do you most appreciate in people? honesty
- Say something nice about yourself… When I love someone, I love them completely and I will protect them with my life.
- Why did you start blogging? to connect with people, to share information, to have an outlet
- Something that makes you laugh? my kids, my cats, witty humor
- 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:
- Kara from Polishing Dookie
- Laura from RibbonRX
- Pamela from Living in a Limited World
- Wendy from Picnic With Ants
- Laura from Bipolar for Life
- Brittany from Shits & Giggles
- Kate from Kate is Rising
- Lisa from Life of an El Paso Woman
- Kayla from Intrestinal Fortitude
- Migraines From Hell
My questions for my nominees:
- If you opened your eyes tomorrow in a whole new existence, what is the first thing you would do?
- What would you eat if you could only have one thing for an entire year?
- What’s your zodiac sign? Do you think it suits you?
- What is your perfect day?
- Who is your favorite author?
- Where would you like to visit?
- What is your favorite quote?
- What is your middle name?
- Savory or sweet?
- What is your favorite animal?
- 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
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 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.
(I guess that’s the anger part of the 5 stages?)