Me Without Healthcare….

This came through my inbox by way of another awesome chick I follow. Her take:

When I read over the healthcare bill draft released to the public last week, I couldn’t help but cry. If this bill passes Senate, I won’t live to see my 40th birthday. This isn’t a maybe, it’s an absolute fact. This is secondary to the millions of others who will be affected by this and I’m terrified for all of us.

Nikki perfectly and succinctly articulates the way many of our government officials view those with disability and hardship – that these problems are self-created by the individuals who are on these programs. Her mock obituary is a sobering view of what the passing of this bill will do to her, myself, and millions of other Americans.

Many of us in the chronic illness community are already fighting to be taken seriously, to have access to pain relief, to be seen and heard. The Affordable Care Act is not perfect, but no option for health care is so much worse.

My friends, my sisters, my daughter….need access to health care. Even without the challenges of an inoperable brain tumor, or a lung transplant, or kidney disease, Crohn’s Disease, or any of the myriad of autoimmune diseases, health care should not be a privilege.

Yearly preventative check-ups, well baby and child care, vaccines (don’t start with me), birth control, or emergency services for when your kid falls of their bike!! These are not unreasonable expectations for a developed society.

Please write to your representatives. Yes, again, if you have to. Stand up for those that don’t have a voice, stand up for your loved ones, stand up and tell DC this is not okay.

Source: Me Without Healthcare….

5 Years Ago

My oldest used to get really frustrated with me because I wouldn’t tell her much about my childhood or who I was before I was “Mom”. It’s not her fault. I had kind of a tough childhood, and somethings I shut out, others I chose to try to forget….you get the idea.

My biological father bailed when I was 6. But I did have 2 other guys that sort of stuck around longer and were Dad-like. The first was my first step-dad and he was around until I was in high school. Not a bad guy, but he had his own demons; and, as my mom would say, when he dropped the ball, Ron (my Dad) picked it up.

Ron was my kids’ Grandpa, he was in my life longer than anybody else dadlike, and he was my *Dad*. He taught me to drive a stick, he was the only Grandpa my kids knew, and he was the guy that filled the space that my father vacated.

I learned so much from him. Not just how to drive a manual transmission, or wrap a Christmas present. I learned everything that got me through 5 days in Georgetown going through radiation. Finding peace. Being still. Being quiet. Breathe. Center.

He died 5 years ago today, and not a day goes by that he’s still not with me in some way.

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So, today’s memory is the time I cut my foot and he picked me up and carried me into the ocean. That was the day that I learned Hawaiian ocean water can cure just about anything! I still drive to the water when I need some calm, some peace, some clarity. But it’s the Chesapeake Bay these days.

1997? I think it was…I cut my foot, not bad, but I was being a baby about it and Ron swore I just needed to get out in the water. Me: “No,no, no! Salt water is just going to sting!!” So he picks me up and carries me out in the water until he’s at least waist deep and I’m screaming and laughing. Lo and behold, the next day my foot was at least 50% better. He was right!

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I miss you Grandpa (dad, Ron, Kumu). I can’t believe it’s been 5 years! But I know you’re still with me, and my mom, and my kiddums! ❤

Ron L Obrey 7/6/1951- 6/23/2012

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.

 

…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.

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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).

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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! 😉

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….

 

Happy….

Happy Mother’s Day to you Spoonies in America that have spawn.

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Or…..
Happy second Sunday in May to those that aren’t in America, don’t have spawn, or are choosing to ignore the muss and fuss today. And gentle hugs. And if someone hasn’t told you that you’re awesome and they’re grateful you’re here, I am. You’re awesome. And I’m grateful you’re on this rock swirling through space with me.

Happy Spring Sunday in May to my sisters, spoonies, fellow strong chicks, and amazing people that need (or don’t need) a day to celebrate or just a reason to remind you that you’re awesome, loved, and appreciated!

Am I being too cheerful or cheesy? I probably am, but I’m also aware that it’s easy to get lost in the everyday and it’s nice to be reminded that you matter. Call it “Xunnie’s learning that she’s lost too many people not to say the good stuff when you can”. Or just “be good to one another” if the first one is too many words.

Also, quick side note, especially if you’re a girl: I just watched “Embrace” on NetFlix. I had donated and supported Taryn’s Body Image Movement way back when it was a picture that went viral and inspired a kickstarter and after finally having the chance to see the result of her hard work, I am honored and grateful to have watched that with my youngest daughter and shared the message.

So, love your body. Even if it’s pissing you off today or it refuses to cooperate. It’s the only one you’ve got. At least right now. And go add Embrace to your Netflix queue.

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Xunnie, right before bed a few weeks ago. This is me, no hair done up, no make up, no filters, and no muss or fuss. I spend a lot of time pissed off at this ridiculous body because I can’t run or dance anymore. Because it hurts. Because I don’t have as much control as I’d like anymore.

But in this picture I was actually feeling pretty good that day. I had gone for a walk and it felt good to get out and walk around and look at some trees in the Spring. It was a beautiful day out in my corner of the mid-Atlantic US middle of nowhere, so I went for a walk, and I was feeling pretty good that day.

So happy Mother’s Day, happy middle of May, and gentle hugs.

Oh! I know I have been shit on posting updates. Partly because there’s not always much to share, partly because last month was a little crazy busy for us. But it’s almost time for my yearly scans so I will have updates soon. I have been having some symptoms that could mean my tumor is progressing or growing and I have been putting off going in to get an EDS diagnosis confirmed. But my lungs are slowing healing and I’m not coughing as much anymore, so I’ll take that for good news right now!

Updates soon. I promise!

 

Why We Need Universal Health Insurance In America

If you’re in America, chances are you don’t have to look very far to see someone in your circle of friends and family, etc that doesn’t have health care; or didn’t have health care until after 2014.
We need health care in America! Americans are arrogant enough to think we’re “the best country in the world”, but we are still fighting over something as ridiculous as a child being born with a heart condition. (Jimmy Kimmel’s monologue this week? anybody?)
The point is we need to care about one another. We need to take care of each other. Don’t leave it to the politicians and corporations. They’re just effing it up. laura’s post sat me down and she writes about something I’ve been meaning to post on, so I’m sharing her post.

WE NEED HEALTH CARE IN AMERICA.
#Iamapreexistingcondition #voteNOontheAHCA #supporttheACA

Bipolar For Life

I have a confession: since the election, instead of meditating first thing in the morning, I’ve been obsessing over the news.

It’s a terrible habit. I can see the negative effect it has on my bodymind. I need to Just. Say. No.

Problem is, this is not mere news voyeurism. This is eye-opening, consciousness-raising, holy-fuck-what-could-they-possibly-be-thinking revelations about the minds of My Fellow Americans.

Here, from one of my favorite medicine/science/tech news outlets, is a revealing piece on what a few handsful of voters have to say about the new “repeal and replace” iteration that has just passed the House.

For all y’all who hail from ports afar, this is about the current Administration’s effort to purge the government, and by extension the health insurance system, of “big government.” What is Big Government, you ask? From my observations, it seems to mean “any regulations that protect consumers and/or the environment.”

Here…

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1-800…..

I make a fantastic villain in a lot of other people’s stories. I’m not sure if it’s because I’m a redhead….or maybe because I’m a Scorpio. Or hell, it could just be because I’m an only child and it’s gift. Whatever the reason it is abundantly clear I am an awesome villain.

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Need a screeching ex-wife? Call Xun! Does your day call for an asshole ex-friend? I’m available! Witchtastic daughter-in-law? Evil ex-girlfriend? Asshole you used to know? I’m your girl!

1-800-call-Xun for ALL of your villainous needs!!!

References and prior engagement details available upon request!

(Clearly I am struggling with some stuff these days, probably part of the reason I am been pretty quiet on the blog lately. But seriously, you should see some of the word art in my journals, all wrapped around the word “villain”. Perhaps that should be my next ink.)

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A sampling of my word art/journaling. Clearly I’m working on something.

But….

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~Xun ❤

 

 

It’s Not Like I Need to Breathe Anyway…

I’m just having a day ….or something…..this week.

I’ve been blue for the last 5 or 6 days. And when I say “blue” I don’t mean maybe feeling a little sad or down. I mean I am literally, actually blue.

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I’m kind of used to it. It started about 9 years ago after I had pneumonia in both lungs 9 weeks after my hip surgery. I can feel it happening, and sometimes it’s stress (I’ve actually had retired-chief look at my hands and walk away in the middle of an argument), or weather, or exhaustion. Or sometimes nothing at all.

I’ve seen more doctors than I can count about it and since these days my pulse ox seems to stay above 95%, they like to just throw it in the Raynaud’s bin and move on to stuff like me choking or the annoying tumor in my brain.

Sometimes it’s not that big of a deal, and I come up with all kinds of colors between pink (I’m pretty sure the color I’m supposed to be) and blue….or purple. The running joke in my house is that I should lay on a table outside for a Halloween “decoration” with just my blue feet sticking out and scare the crap out of people. Yes, we’re an interesting bunch.

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I’m just annoyed because I have been really, really blue for the last few days. It’s probably all the crazy weather we’ve been having and today we have thunderstorms moving in and through my area, and that’s almost a surefire way to trigger a blue episode in my hands and feet.

So between my blue fingers and the fact that FedEx lost a box I was supposed to have delivered yesterday, I’m just irritable. (The box was marked “delivered” at 6:01 pm, EDT but unless it’s invisible it’s not on my front porch.) Side note: I called the company and FedEx, got a refund, and put a trace out, but the FedEx delivery for my area are just idiots anyway.

And I’m kind of chewing on the fact that I think I might have made my mom cry yesterday but I didn’t mean to. We were talking about my tumor and I said something about how long I have left and she had to go, but I think I upset her. Because I’m an asshole even when I don’t mean to be.

And fuck cancer.

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My outfit today. Because Deadpool. And because fuck cancer.

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Aaaaaand I’m back to coughing shit up. The cough has never gone away, and my pulmonologist gave me “dysphagia, related to trigeminal shwanomma” and blew me off with “sit up when you eat and take smaller bites”. I don’t have a $200,000 medical degree but I could have told you that, so whatever.

Like I said, I’m hostile today. And this is all the noise in my head.

Anybody know what it means when you cough dark green….something up?