Category Archives: music

7 Days, 7 Photos; Day 6

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

Today’s Photo:

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

❤ ~ Xun

 

7 Days, 7 Photos; Day 4

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

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

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See you tomorrow for day 5! ❤ ~ xun

What About….

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

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

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

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

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

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

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

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

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

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

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

 

If I Could Close My Eyes….

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

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

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

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

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The point of all of this is:

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

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

No, he didn’t take himself too seriously.

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

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

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

Do You Know What YOUR Brain Looks Like?

I have been terrible with up dates, I know.

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

Well, What I DO know is that

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

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

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

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

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

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

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

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

 

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

Xun = Music, Music IS Xun.

 

Awesome Bloggers (and …)

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So Kara from Polishing Dookie, who is an awesome and inspiring chick that blows me away with her compassion and ability to laugh through the pain, nominated me for an award.

This award was created by Maggie – Dreaming of Guatemala. She created the award “For the absolutely wonderful writers all across the blogging world. They have beautiful blogs, are kind and lovely, and always find a way to add happiness and laughter to the lives of their readers. That is what truly defines an awesome blogger.”

Rules of engagement:

  • Thank the person who nominated you.
  • Include the reason behind the award.
  • Include the banner in your post.
  • Tag it under #awesomebloggeraward in the Reader.
  • Answer the questions your nominator gave you.
  • Nominate at least 5 awesome bloggers.
  • Give your nominees 10 new questions to answer.
  • Let your nominees know they’ve been nominated!

 

Thank you Kara! I know you’re up to your eyeballs right now, but you still find a way to keep us all up to date and stay in touch. I am grateful to know you and be inspired by you all the time!

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Kara’s Questions for her Nominees:

If you found out you had 24 hours to live, what would you do with your remaining time?

Skydiving?
No, seriously I know the expected and correct answer is spend as much time with my loved ones as possible. And I would, my mom, my husband, my kids, my best friends. And I would write down as much as I could for my kids to have to look back on as they go through their own lives.

Do you have any irrational fears? If yes, please explain.

I have an irrational fear of bats. No I don’t know why. No, I don’t want to hear all about all the cool stuff they do.

What is your favorite song?

Ahahahahahahaha….(wheeze…..cough……inhale)….hahahahaha. Have you met me? Pick a genre, an artist, a decade….I gotta have something to narrow it down first.
That being said, let’s see: The Shadow of Venus by Apocalyptica is my ringtone right now, I have 391 (give or take a few) songs on my phone, and the last 5 played were:
Bad Romance by Halestorm
Pony by Ginuwine
Quiet by Milck
Royals by Otep
It’s Quiet Uptown by Kelly Clarkson

and I have Sister Christian by Night Ranger stuck in my head right now.

Have you ever done the truffle shuffle?

Hell yeah. And I own the movie. And I have 2 Goonies shirts!
Goonie Never say Die!

Describe yourself in four words or less (?)

chick, geek, mom

If you were a comic book character, would you be a hero or a villain?

I’d love to say hero, but we all know I make a fabulous villain. But like Maleficent or Harley Quinn villain.

What would your special power be?

Reading minds? Or maybe teleporting?
(Who am I kidding, I just want to get my eyeliner wing right!)

Do you have any habits that drive other people bonkers?

I’m sure I do. I’m a grammar nazi, and can be a perfectionist, and if I argue I make sure you know I’m right.
(I might share a little too much sometimes too.)

Does “normal” exist?

What is this “normal” you speak of?

Chips or cookies (or both at the same time)?

Usually chips, but I do have a recipe for Potato Chip Cookies with butterscotch chips.

Xunnie’s Questions:
Stephen King says if you don’t have time to read, you don’t have time to write. Do you think that’s true, and why or why not?

What would your readers be surprised to learn about you?

Which book world would you like to visit?

Do you have any pet peeves?

Book or Movie? Why?

What is your biggest phobia?

What are you proud of yourself for?

What is your favorite joke or pun?

Lions or Tigers or Bears?

What made you decide to share your story and start your blog?

Xunnie’s Noms:
Kara (Can I nominate her back? If for no other reason than for her to answer the questions?)
Laura

Brittany

Pamela (even though she’s taking a much needed break, I have learned so much from her!)

Rachel

Kate

Meagan from My Acoustic Neuroma Journey

J from Eye Will Not Cry

Migraines from Hell

Lisa at Life of an El Paso Woman

“Anna” at Anonymously Autistic

Sherrie from I Sign. I Wonder.

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I meant to write one post today but after it ended up being almost 1300 words, I split it.

Part two, coming up….

 

The Why

I saw a lot of support for International Women’s Day yesterday, but there was also some really ugly closed minded responses (here’s to the “real women” that didn’t “strike” today). Did you know that *every* March 8th is Women’s Day? And November 19th is Men’s Day? And yes, this year Women’s Day held some extra weight. Because of the events of the past….6 months? (give or take) women are marching, speaking out, striking, 10 Actions in 100 Days.

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I personally lean pro-life, but I’m standing up to make sure Roe V Wade isn’t overturned. I personally lean more hetero feminine female, but I’m standing up for people to have the right to be who they are. I personally am married to a man in a traditional marriage, but I’m standing up to make sure Same Sex Marriage is not overturned in any of the 50 states that it’s now legal in.

I have a mother, and a grandmother, and 2 daughters. I stand up for them. For me. For women that can’t. For my friends, and family, and all of the women in my life that I love. And for all the women before me, after me, and the women that inspire me.  It doesn’t cost you anything to be compassionate and supportive, but it means everything to the peoples that need it now, and in our future generations.

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Chronic illness doesn’t take a day off, chronic pain doesn’t take a day off, life doesn’t take a day off, but I did post a strike notice yesterday on my blog. No, I didn’t march on Washington or lay on my couch and check out for the day. But I spoke out and I supported the women that were doing the marching and the protesting. Because I have daughters. Because I know what it’s like to be a woman in this county, in this time period, in this world.

Why did we speak out on International Women’s Day this year especially?
Because being a woman means….

1. Carrying your keys between your fingers as a “weapon” when walking alone at night.
2. Turning your headphones off (or way, way down) to make sure you’re not being followed.
3. Mastering the “I’m walking quickly but not so quick you’ll know I’m afraid” when someone is behind you.
4. Calling friends when alone in a taxi/Uber/Lyft/walking from the Metro to your car in order to feel safe.
5. Texting your bestie/boyfriend/parents/brother your driver’s details “just in case”.
6. Messaging them when you get home to let them know you’re okay.
7. Sitting near other women on public transport to minimise the risk of being harassed.
8. Pretending to be on the phone in any number of situations to avoid harassment.
9. Giving men fake names/numbers rather than risking them lashing out at being told “no, thank you”.
10. Staying silent when being verbally harassed out of fear if you say something it’ll turn violent.
11. Keeping your drink covered with your hand/ getting your friend to watch it if you need to go to the bathroom/having to throw it out & get a new one if it was unattended at a bar so you don’t risk getting drugged.
12. Making sure someone always knows where you are if you’re going on a first date with a stranger.
13. Toning down statements with words like “just” and “sorry” to avoid being perceived as pushy or aggressive or bitchy.
14. Faking being happy even when you don’t feel like it to avoid being seen as a bitch.
15. Not being TOO perky so that people don’t think you’re stupid.
16. Pretending to be patient when you’re interrupted/talked over repeatedly by men.
17. Spending money each month on period products, which are still considered a “luxury” by men/governments.
18. Hiding said products up sleeves/in pockets when going to the bathroom in public places, because there’s still a stigma around periods.
19. Wearing makeup because you’re conditioned to believe your bare face isn’t good enough
or heck, just because you like it – and being told you’re fake/called false advertising.
20. Or not wearing makeup because you don’t want to & being told you look tired/sick/”you’d be so pretty with just a little make-up”.
21. Debating whether the tweet or Facebook status you’re about to post will result in being harassed,& having to make the decision about whether it’s worth it.
22. Answering/deflecting personal questions about your relationship status/fertility/home life from friends/coworkers, potential bosses, current bosses, or random strangers.
23. Dealing with birth control/side effects if you have sex with men & want to avoid getting pregnant because there’s still no male equivalent available.
24. Fighting with the knowledge that the government (dominated by men) has the power to legislate against your body, and standing up to make sure they don’t.
25. And, finally; dealing with people telling you your concerns aren’t valid, you should stop complaining because “women are equal”. (Also known as the “what rights DON’T women have?!” argument.)

Tell Me What You Can’t Remember

I’ve been pretty quiet lately. Mostly because I feel like I’m up to my eyeballs in trying to understand and survive the new version of Sims~The Insane America version. And, based on the blogs I have seen, and the spreading silence of the others, I’m guessing a lot of people are doing the same thing.

But, I saw my neurologist today, so I figured I’d post an update (and I can share the song I have had in my head for weeks now!)

So….oh, back up. Actually I have a funny story and it sort of relates to my new reality of “Is this brain tumor or not?”.

Last night I was making dinner and …..well, I had to stop for a few minutes and ended up calling hubs (who I knew was already on his way home from work) and …
ring……ring “Hey baby, what’s up?”
“Oh hey. Um, how far out are you?”
“I just pulled into the neighborhood, why?”
“Oh……I may or may not need a stitch or two…”

….”See you in a minute.”

I was slicing mushrooms and the chefs knife decided I was a mushroom too.

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Fortunately it wasn’t big or too deep, so we actually went over to urgent care. They said yes, I needed to come get checked out, but instead of 1-2 stitches, the doc elected to do surgical glue.

So I am being a little bit whiny today because I tried to chop the end of my finger off. And ow. And 1/10 do not recommend.

So, forward to today. I had a follow-up with neuro after my swallow test last month.

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Mild Dysphasia. Because of brain tumor or not? Hard to say for sure, probably yes, but stable for now. So I tell Dr Neuro I’m having more memory issues. It’s worse if I’m forgetting something and I start to get flustered or if I’m already upset. But it’s a thing, and I’m starting to write things down and back myself up with support people or apps/phone/tablet/etc. So she asks me “What don’t you remember?”

Ummmmm, I don’t know. I can’t remember. Anyway, she followed up with a memory (Alzheimer’s?) baseline test and a quick neuro exam. Declared me stable (ish) and gave me 4 months before I have to see her again, and bounced me back to pulmonology because I’m still coughing, my voice comes and goes, and occasionally I have a productive-ish cough. It’s gross and hanging around since MRSA last April.

So I go see pulmonary dude on the 16th and plead with him again to please just do the damn bronchoscopy. Please? The coughing thing is kind of a pain in the ass.

So, Xunnie and her brain tumor are mostly stable. A little chopped up, kinda whiny sometimes, still coughing, but…..stable.

And I have had this song in my head since the Women’s March.

(But I kinda love it!)

Surviving the Damn Year

So, this being the second day of 2017 means we made it. We survived the frickin dumpster fire of 2016…

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I’m still a bit skeptical. We do have to survive inaugurating Donald Trump in 19 days, and it really doesn’t matter what side of the fence you’re on when it come to the historic choice of electing someone to run America with NO leadership experience or previous posts in any elected position, we don’t know what he’s going to do.

Nevertheless, I am hopeful that 2017 is going to be less agonizing than 2016. We still have to clean up the mess from 2016, but one can hope we have no where to go but up, right?

As for The Xunnie Show, I have survived the last round of tests (A modified barium swallow test is weird!!)

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…and gotten half of the results.

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I haven’t heard from my neurologist. Which either means she took a holiday for the rest of the season and should be back shortly, or she’s waiting until my appointment in 4 weeks to follow up. It says “Mild Dysphagia” which means the tumor is starting to creep into other ways of making my life interesting. But I am still coughing, and I still occasionally have a productive cough. So I’m think I get the best of both. Progression of tumor symptoms, and a reason to go back to the pulmonologist and see if I can finally get that broncoscopy.

So that’s where I am health-wise. Tumor is still hanging around. Apparently (s)he feels neglected? I dunno. More news to come when it’s available.
Upcoming: trip to pcm for EDS diagnosis
trip to neuro for swallow follow up
back to pulmonology to see what’s up with my lungs
follow up with pain management (to keep them in the loop) in February

In life-and-holiday news

I got to go to The Kennedy Center and see Wicked with my youngest. AWE-some.

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The kid got her most-wanted Xmas gift: A Newt Scamander coat

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…and I got an awesome hoodie from my Mom.

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Hooray for cancer/tumor support and research!!

And the fur babies got a new scratchy-scratchy! They love sitting on their new couch!

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So, that was pretty much my December. Juggling doctors, chasing tests and scripts, and holiday shtuff!

I hope you survived 2016 mostly intact….and 2017, here we go!!

 

It’s Quiet Uptown

I’ve had so much stuff rattling around through my head. It always resets me when I see that I haven’t actually posted in a minute because I am always writing, but I guess it takes me a bit to write through my journals for enough time and words to come together for me to make the hop into publishing it. But…okay, here we go!

It’s just been such a weird year. I was scrolling through twitter and saw a re-tweet I sent a few months ago : I hope 2016 doesn’t get renewed. The plot is ridiculous and none of the characters are likable.

Seriously.

Between my own personal journey around the 4th gate of Hell this year, and losing so many people, this insane election season, and now we careen toward the end of 2016. Anybody wanna come hang out in my blanket fort and color til the crazy moves on? Can it? Would it? Where would it go? Can we get together and vote it off the island?

The good: The Cubbies won the series!!!! Holy ssshhhhhhhhiiiiiitttt! I am personally not a fan. Of baseball or the Cubs, but my Bren was a YUGE fan I just know she was up in Heaven dancing her ass off the other day! I spent half the day after the Cubs won talking to her. Just wondering around my house getting stuff and telling her I knew she was so excited. And how weird it was that they won, they *finally* won 9 1/2 months after she passed. She died and they won in the same year. Idunnoknow. I just miss her. And her Cubs won!

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Bren; source

Bittersweet. I have so much joy knowing her team won, and all I can do is close my eyes and know she is up there dancing and celebrating!

On a different, but related, note. I saw today that one of my friends I play games with online lost her granddaughter. My heart is absolutely hurting for her and her family now. I watched through FB posts as she shared the unbridled joy of becoming a Grandma less than 2 years ago, and the fear & struggle as baby girl was diagnosed with neuroblastoma at just over a year old last December. And today I open my FB feed to see her post that babygirl had passed late Thursday night/2 am Friday morning.

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Don’t wait. Tell your loved ones you love them. Don’t let your last word be in anger. Don’t wait. Life happens in real time…..one of my favorite sayings and it reminds me there isn’t always tomorrow or next time.

So send out some positive energy, or a prayer, tell someone you love them, hold on to the good stuff. It all happens in the blink of an eye.

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Quick update on me:

It’s becoming more likely that I have Ehlers-Danlos syndrome. Two of my doctors have brought it up, with my pain doc advocating for me to go back to my PCM for the testing.

I have a referral to a pulmonologist this week. I choked waaaaayy back in February, had MRSA in March & April, and I still have a random cough, with an even more random productive cough. My chest xray was mostly clear, but my PCM and the ER both suggested a broncoscopy, so it’s off to see the guy in charge of throat-lung scopy things.

Meds are mostly stable, but frustrating. I am so over this damn “drug war”.

Minimal T-spine and C-spine degeneration and slight curvature. Scoliosis and Pectus Excavatum noted in my chart.

I’m blowing off my GI referral. Still don’t think I need it. Off to pulmonology instead. At least that one makes sense right?

At any rate, I think that sums up most of where I’m at right now. Think I may start an extra tab with my diag-nonsenses.

Hugs & an extra hour tomorrow! XoXo ~ Xun