Tag Archives: social media
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?)
The owner of this site is female and on strike in solidarity with The Women’s March and International Women’s Day.
“We ask justice, we ask equality, we ask that all the civil and political rights that belong to citizens of the United States, be guaranteed to us and our daughters forever.” ~ Susan B. Anthony
Just a quick post today, because I’m seeing a lot of emotion and fear floating around social media and the blogosphere today. Well……this week actually. And probably for some time to come.
America is reacting right now. The world is watching, and reacting too. Some good reactions, some bad reactions, and a lot of fear because we don’t yet know what’s to come. And with the way 2016 has been, it could really be frickin anything.
(For example, my pulmonologist telling me my brain tumor probably is going to kill me, but more like affect my ability to swallow so I’ll die by chocolate milk. But that’s another story, and I’ll post that blog soon.)
At any rate, back to my quick post.
I have raised my kids to believe that everyone matters. Their whole lives I have told them I don’t care who they choose to be, or be with. Because love is hard enough to find in this world. Be kind, love one another, include others in your life. My kids don’t judge color, shape, size, religion, sexual preference, gender, or age. Love is love.
Don’t forget that.
Mostly because it’s been a rough August, and a rough year. For a lot of us…
For my favorite Dookie fighter!!
And if you’re having a bad day, just remember…
Believe in a little magic….
…and find something that brings a smile to your face!
(And if you’re bored, my Tumblr has so cool stuff! I forget about it and then scroll back thru and find more treasures!)
I was influenced by a post from one of the bloggers I follow the other day. She’s a fellow brain tumor spoonie and shared about her furry babies. So I was inspired to share about mine. Love comes in all shapes and sizes, and on some of my toughest days my furry purr boxes help me survive the pain.
We rescued my Phoebe kitty in 2009 when she was 4 months old. She’s unique in that somehow it seems like she’s all Manx even though her mom was feral. She’s a silver tabby and everybody always asks me why she doesn’t have a tail. She’s sweet and funny (and credited with changing hubs’s mind about cats) and earns her nickname of FeedMe Kitty all the time.
Next we ended up with Honey Girl. My oldest daughter rescued her, but when she moved back home Honey decided she belonged with us, and her and Phoebe are like sisters. Honey was born on or about July 15, 2011….making her and Phoebe almost exactly 2 years apart.
She’s a beautiful long haired tortie and she loves everybody, definitely earning her name Honey Girl!
Our youngest kitty has only been with us for about 2 months now. Daisy is a short hair tortie and she’s still finding her place in the household, but she’s very sweet and active and loves sleeping next to my head at night. We think she’s about a year and a half old, but she’s little at only 7 pounds.
Did you know that cats purr at a frequency that soothes pain?
Next up…. probably tomorrow or Monday….we have 4 hermits crabs too!
This is completely off topic from what I created my blog for and what I usually write about. But I feel like it’s important enough to be shared. To be talked about.
If you’ve ever been through a trauma, this is going to hurt. If you’ve been sexually assaulted, this is going to hurt. If you have a daughter, this is going to hurt. Because if it were my daughter writing this statement, I’d kill somebody.
If you’re a woman, this is going to hurt. If you love someone, this is going to hurt.
Too many women I know have some kind of story to tell, me being one of them.
I have also been through something that ended in PTSD symptoms like the author describes, but it’s a completely different scenario. I’m not comparing my experiences to hers, I’m just saying I know what nightmares, and lack of sleep, and sleeping with the lights on, and fear, and desperation feel like to me.
This is going to take 20 or 30 minutes to read, longer depending on how fast you read or how many times you have to stop and breathe. But read it.