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…
…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.
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
When I’m overwhelmed or there’s just a lot going on in my life, I tend to get really quiet. Yes, I’m aware that when it would make the most sense for me to write it out, cry out to the world, I tend to shut down. Retreat into myself. I’m aware. I still call it a survival mechanism. A leftover from a tough childhood.
The things that hurt…
…on the day my sister (in law) died, my son kicked me out of his life and it’s taken me about a year and a half to get something that almost resembles the beginnings of a start. But he’s my son, that’s my boy. I’ll take the pain. There’s no way I’m walking away.
…I miss B (my sister) all the time. I wonder if I could have done more for her. I talk to her a lot. Which sounds like I’m just a leeeetle bit crazy. But I believe she’s around. I think….I hope that we can have these conversations and she hears me and I can find bits that tell me we’re communicating.
…I miss my dad. I miss my dog. I like to think they’re off in this amazing better version of here. And together.
…And my biggest secret. My wedding anniversary is supposed to be tomorrow. I mean …it still will be. The date marking an event that happened 18 years ago will still exist. But mostly only because I’m still alive, sometimes against my will, and I’m still here. I packed up and left for about a year, 10 years ago. But all hell broke loose in my life and I got scared. I retreated back into a life that was familiar. I told myself I was happy.
Then I got sicker and sicker….
Chronic pain, complications from my hip replacement, pneumonia in both lungs with O2 stats dropping to 86%,leading to in home O2 for 3 months. More surgeries, more treatments, all while a full time college student, all while moving to and through 3 different states, all while trying to make a marriage work and take care of my kids and my family.
Tomorrow is my wedding anniversary, 18 years ago I stood at the base of the Ko’olau Mountains and recited words from an event I wrote.
Now, I don’t even know what “thing” (silver? cotton? silk?) the anniversary stands for. I don’t have a card, or a gift, or a plan. Because I am unhappy. Unhappy as in I go to sleep more nights than not hoping I don’t wake up.
I’m sorry to think that for my mom and my kids, but I just feel like my reasons, my purposes…are done. They’re over and I can go now. I mean I’ve lived through 6 surgeries, septicemia, a brain tumor, radiation, and MRSA . And 2 blood transfusions. When is enough enough?
2016 was an all out, no holds barred suckfest. Universally.
But 2017 leaves me feeling like my life is upside down. I’m unhappy. And I don’t fight…..well, with anyone anymore, but my husband in particular. And very few people know that or know why. But the fight has been chipped away, and there’s not much left.
So, yes, I am very quiet lately. I am struggling. I am unhappy. And those are the kinds of things that leave me retreating into myself.
It’s been a minute since I sent out a missive. When a lot is going on, I think I tend to step away from my blogging, fill it in with journaling, but my introverted nature takes over and I get quieter.
Where to start? Well, my labs from this year’s physical came back and Doc PCM was very pleased with my numbers. GGT came down by 110%, just a hair on the high side, but trending down so more more freaking about about liver function panels, etc. Seem me and my liver are mostly fine! So that was excellent news! Vitamin D, B12 excellent levels, cholesterol came down. The last bit to close that business out is a retest of my TSH and T4 in November to see if a change in my Synthroid might be needed, and that’s easy.
I had the requested thyroid ultrasound, and the report notes ” no nodules seen, finding consistent with Hashimoto’s Thyroiditis.”
So the next adventure will be me submitting a request for a specialist (Rheumatology maybe?) for pinning down that EDS diag-nonsense. According to my PCM (and therefore she who is the primary traffic director) it boils down to a lot of blood tests and my plan of care won’t change much, but (like I told her) my doctors like to have a diag-nonsense they understand. It doesn’t change my life, my care, or how I’m managed right now. I already have “benign brain neoplasm”, “left total hip replacement, Nov. 2007”, and a couple of other CRPS-type diagnononsense, so I get it.
But I know the docs like to have something to pull together all of these different surgeries, pain management, brain tumor, implants, etc. They like it when I have a diagnosis they understand, even if it doesn’t change much for the patient. And with a few of my doctors bringing it up to me, it was worth diving into research.
I don’t do Dr. Google or WebMD…..I read academic papers, case studies, research papers. And when so much fits, and I have 2 of the docs I see the most saying “yeah, go check it out.” I requesting the referral. So, that’ll be my next project.
So I guess that’s all the Xunnie medical updates:
Yearly MRI w& w/o contrast on my brain: Tumor is still there, stable in size. kthxbai.
Yearly physical: good labs, retest T4 & TSH in November
Thyroid ultrasound: measured, noted “Findings consistent with Hashimoto’s thyroiditis. No discrete nodules noted”
Still a brain tumor patient, still interesting to ortho surgeons. But strong and doing better this year.
My youngest daughter starts high school tomorrow and I haven’t quite figured out if and/or how much Imma freak OUT.
It isn’t just my youngest starting high school, it’s just that my youngest is starting public high school and I have been Homschooling her for the last 8 years. So yeah. Big change! BIGBIGBIG changes for both of us.
So after 8 years, it seems I am out of a job, relegated to “just mom”.
It’s good stuff for her, and I am so excited for her to make friends and join clubs, all the good stuff out there!
But as for me, in the quiet, at the end of the day, I stare at the wall and I wonder. Do I freak out? How much? Should I?
My youngest is my rainbow baby (and if you get that, I am so very sorry), she walked early….9 1/2 months old, 2 feet tall toddling ….walking all over the house.
Now at 14, she’s thin and tall…just a couple of inches taller (*spoiler alert: I am not, repeat: NOT surprised my kids taller than me.
And in my middle of this, I try to remind myself to be grateful, #blessed, we are thankfully able to get through all this.
I don’t have to look far to see that people are struggling.
Danny (my MIL’s son) had to have a quadruple bypass, then he had complications.
Nick, a family friend, motorcycle wreck last week , had to have surgery and has rehab and PT coming up.
Another friend , Danny, had ACL surgery.
Jeff had rotator cuff surgery,
Destiny got diagnosed with a brain tumor and is getting fitted for her mask for radiation therapy (a process I’m familiar with….I did it 3 years ago this week!),
and hub’s Aunt Connie passed away (sudden heart attack).
And finally, one of my favorite people just had her Dad move back in. He has advanced lung cancer. He’s a hell of a fighter.
I see all the struggles and I know how hard some of these things are to fight through.
My heart hurts. Reach out. #Loveoneanother. #Connect. #Support. Don’t wait…..tell them they’re important to you.
Hugs, love, positive energy…..<3 ~ Xun
I have been pretty quiet on my blog for a bit now. Some of it because I’m going through stuff in my head, other reasons just being that I haven’t had much to report on my illness. Last year I couldn’t seem to stabilize, this year I have.
But it’s July 17. And aside from the insanity of the world and my country’s “leaders”, losses (George Romero. You will be missed.), and life, the universe, and fish; July 17, 2001 is the date my before became my after. Post part-of-my-world-didn’t-make-sense, post PTSD, post Rainbow baby, sixteen years later I am a very different person. And so I usually stop and take stock on July 17.
The stuff I’m going through in my head? I’m trying to figure out how to want to live again. This is the kind of thing I haven’t touched on in my posts about scans and tests and insane amounts of radiation. We talk about the scans, the tests, the treatments, surgeries, recoveries, and medications of chronic illness, but what about when they tell you it’s inoperable? Incurable?
I got told I have a relatively small, most-likely benign tumor in my brain *but* it is inoperable, incurable, post-treatment (radiation) stable, but I’m still a brain cancer patient. I spent two years (give or take) preparing to die.
Inoperable, chemo’s not an option, radiation means scary complications are possible, and in some cases (brain edema) expected. I fought with my oncologist and refused steroids because the patient cases I read about them scared the hell out of me. High dose radiation scared me, the specific steroids for the brain edema scared me more. So I fought with him and fought through three weeks of brain edema and a trip to the ER that required meds, fluids, and a surprisingly high dose of potassium before they would release me.
Three years later I’m pretty stable. (aside from the awesomely clumsy episode of me dropping cleaning supplies on the bridge of my nose yesterday…….frickin OW)
Last year I couldn’t seem to stabilize. I had MRSA in my lungs and throat and spent almost an entire year coughing up green yuck. Another trip down the stairs. Frontal lobe spikes on my EEG. This year, I finally got my lungs back, I’m still clumsy but the stairs and I have an understanding for now, and I can (usually) finish a sentence.
My body seems to take a year to get through something. Instead of having pneumonia, getting antibiotics, and recovering; I had pneumonia, lots of antibiotics, 3 different inhalers, and eventually in-home oxygen when my O2 levels dropped under 86% walking around my doctor’s office before, about a year later, I recovered.
Dunno why. But a lot of things take me a year.
Throw an artificial hip (10 years ago this November), a brain tumor, and crappy MRSA lungs at me and I start making peace with my the great hereafter. Or something along those lines.
We talk a lot about life with an illness or during a treatment, but we don’t mention staring into the mirror and making peace with your mortal coil. But it does happen, and we should know we’re not alone. I should know I’m not alone.
So I’m kind of, sort of, coming out the other side of that. I’m thinking this stupid thing won’t kill me. At least not yet.
So while I’m pretty quiet on my blog, my journals show I’m still thinking, writing, struggling. I’m still living.
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….
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!
Kara’s Questions for her Nominees:
If you found out you had 24 hours to live, what would you do with your remaining time?
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.
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?
Pamela (even though she’s taking a much needed break, I have learned so much from her!)
I meant to write one post today but after it ended up being almost 1300 words, I split it.
Part two, coming up….
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.
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.
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.
My outfit today. Because Deadpool. And because fuck cancer.
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?
There are a lot of things that come with having a chronic illness. We talk about the eventual solitude because family gets tired of dealing with doctor visits or tests, and friends fall away because you can only cancel or reschedule time with them so many times before they give up, and before you know it…..it’s just kinda you and a good book or your favorite show.
Another side effect is getting smarter about your illness and/or medication(s). It may be to learn how to survive with your body doing its best to turn on you. Or it may be out of self defense because the doctors aren’t paying enough attention, and somebody has to advocate for you. So without much other support, you learn everything you can about your disorder or disease so you can defend yourself against a doctor that has you and 3 other patients in the next 15 minutes.
Those are just some of the life side effects, then there’s the medication side effects.
Right now I’m struggling with having gained about 15-20 pounds because of one of my meds. I’m not necessarily over weight, but I am heavier than I have been since before I had my hip replacement.
After having been diagnosed with Congenital Hip Dysplasia at 29, I worked my ass off (literally!) to get down to my lowest possible weight for my height and body type in an effort to push hip surgery off as long as possible. I ended up losing 50 pounds total. At the beginning of that journey I was overweight, so I did what I always do and dove into research and figured out what was the lowest weight that was still within a healthy BMI and I changed my diet, exercised every day (I could eventually speed-walk 4 miles in 45 minutes!) and reached my goal weight.
Once I reached my goal weight, I have bounced up or down a few pounds like most people do, but I pretty much stayed at the same size. And now I’m closer to the size I was before I was diagnosed with Hashimoto’s.
I’m not making much sense, am I? Basically I’m just saying I’m struggling with having gained enough weight to go up a dress size in the last few months. And this is one of those side effects from our meds that we may not necessarily say too much about because we’re avoiding more discussions of our illnesses and hoping no one says anything about the size of our asses. Or I am anyway.
The fight in my head is 20 pounds versus lower pain levels, better control of my hands, and fewer migraines. So I guess I’m learning how to live with a few more pounds.
I was scrolling through my instagram notifications last night and it occurred to me that my life is really weird now.
I’m in this really bizarre place that means my life now includes words like “cancer”, “cancer planning”, “tumor”, “radiation”, “treatment”, and “inoperable tumor”.
Ten years ago, I was referred to psych because I brought up Fibromyalgia to my doctors as we searched for something to explain the myriad of symptoms I had. Fibro was still in the ‘hysterical, hypochondriac women’s made up crap’ pile, so I had “eating disorder”, “possible addiction issues”, and “anxiety disorder” put in my medical record and my doctor called the psychologist on duty in to talk to me. Fun stuff.
Now, I have physical proof that I’m in pain and I’m not crazy. Yeah, my monthly scripts are kinda crazy, but it’s pretty hard to argue with CTs and MRIs showing cervical spondylosis, a hip replacement, and an inoperable brain tumor. A million scans, six surgeries, more tests than I can remember, and more doctors than I can name later, nobody argues with me.
Nobody argues that Fibro is made up anymore (and for what it’s worth, my diagnosis was confirmed by Rheumatologists at Hopkins), and my “cancer team” (that’s so weird to say) is at Georgetown.
Even my mother used to wonder if I was a hypochondriac. But the further I fall down this rabbit hole, and the more research I do, it seems like it’s entirely possible that between the drugs my mom did in the 60’s, my father’s two tours in Vietnam, and a traumatic brain injury at 7 years old leave me with things that can be argued against less and less. Although I still think the metal-on-metal implant I have in my hip could be connected to my brain tumor.
It’s just such a bizarre place to be. Half of my life online includes cancer support and advocacy.
Even though my Radiation Oncologist, Neurosurgeon, and Neurologist are about 80-85% sure my tumor is benign (something about it being right up against my brain stem makes them reluctant to try to get a hold of it), I still fall into the brain tumor/brain cancer crowd.
So I research. I connect with other tumor patients. And I try to survive.
Along with a brain tumor….
…I have learned about trigeminal neuralgia, balance issues (ie: falling down the stairs), and seizures (mine tend to be absence seizures instead of the grand mal like seizures you see on tv).
My life is very different now.
This is a weird place to be.