One of the biggest changes I have noticed since being diagnosed with my brain tumor (headaches, vision changes, and falling down the stairs 4 times so far notwithstanding) is that I have days I have trouble processing time. I can look at the clock 4 times in 5 minutes and not being able to connect what time it is.
I understand morning, afternoon, and evening but I will have whole days when I have trouble understanding the clock when I look at it. It doesn’t matter if I look at a digital clock or a traditional clock.
For example, if I have plans or an appointment at 1:30 pm and I look at my clock and see it’s 11:00 am, I know I have time before I need to go, do, meet, see, ect. But I have days that I can look at the clock 3 times in 10 minutes and not understand what 11 am means, so I do the math in my head again and know I have 2 & 1/2 hours. But it’s just on these days I keep looking at the clock and it’s just difficult for me to understand it.
I think maybe it’s because:
1) I already struggle with subjective, abstract ideas. In college, the class I had the most trouble with was Critical Thinking. I fought with my instructor because I didn’t like being graded on something subjective.
I also think the Phantom Time Theory might have something to it, and I find the whole idea that the date and time is what we say it is because we’ve set it at some specific time. Clearly I’m not a fan of daylight savings time.
2) I think maybe the part of my brain that understands abstract ideas might have been damaged by the tumor and the crazy lasers they were shooting into my brain. (okay….radiation therapy, close enough.)
According to the many, many, many scans of my brain and my tumor, the mass seems to be in the left prepontine area, right up against my left 5th cranial nerve. It’s too close to my brain stem for surgery, so it’s me and my tumor trying to figure out how to exist. So I figure out how to back myself up with notes, alarms, or timers.
I think human beings, especially Americans, struggle to process time. In America, we typically use the Gregorian calendar based on the idea that it’s 365.25 days each year, based on solar cycles. Other countries, and some businesses, use the Julian calendar. I learned that when I worked for Prudential Insurance too many years ago for me to tell you when it was.
I even understand military time and that Americans seem to write the date differently. October 15, 2017 vice 15-10-2017.
But…brain tumor or no brain tumor, what would you change about how you handle abstract ideas like time if you didn’t know what the rules were?
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
In the US we’re watching tensions built with North Korea and current administration. News out of Washington always seems like we just never know what’s really going on.
There is a 30 foot inflatable chicken on the Ellipse near the White House. I’m only about an hour or so from this area and THIS is HILARIOUS! I dunno if you have a twitter or facebook, but if you do, do a quick search for “giant inflatable chicken” and enjoy the commentary!
Doesn’t matter which side of the aisle you’re on, this is FUNNY!
The Trojan Chicken!
“I don’t think Trump and North Korea should be playing chicken with nukes.”
You only elect the giant inflatable chicken once!
“Yesterday: Trump threatens North Korea with “fire and fury”, Today: We are LIVE covering the giant inflatable chicken on the South lawn of the WH.”
“Giant Inflatable Chicken 2020!”
Okay…..back to your day…..
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….
Happy Mother’s Day to you Spoonies in America that have spawn.
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.
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!
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.
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.)
A sampling of my word art/journaling. Clearly I’m working on something.
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?
It’s not hard to find an article about the “Great American War on Pain (Meds)”, whether it’s a personal account or news about what our lawmakers are(n’t) doing for us….I mean protecting us from. Screw that brain tumor and spinal degeneration, chick, we WILL SAVE YOU FROM DAH DRUGS!!!!! ( whether you need it or not).
I never asked to be in this club, and I’m pretty sure there’s gotta be others out there that feel the same way, but I can only speak for myself, so other than the linked articles, these words are mine. This has been MY experience. The good, the bad, the really bad, the ugly, and the humiliating.
My personal journey with chronic pain started back in the 90’s with a misdiagnosed congenital leg length discrepancy. (I have congenital hip dysplasia….by itself not surprisingly unusual. But my case….the defect was missed my entire childhood, and then only begun to be discovered via a really ridiculous diagnonsense of “my left leg being 1.5 cm shorter than my right leg. Specifically, my left femur.”)
Fast forward about 15 years, throw a correct diagnosis of Congenital Hip Dysplasia in there (which by now has begun to affect my spine), a total hip replacement surgery, 4 months of rehab and PT, and a good dose of double pneumonia. (Side note: I also had nerve damage in my left arm) and you have somebody rolling into 2008-2009, discovering she has some serious pain.
So once I rolled all the O2 tanks out of my house because they were no longer needed, and tried to get on with my life, I found that I still hurt. A lot. All over.
I got told I was crazy, I got told I needed to see a therapist, I even had “potential drug seeking behavior, potential addiction? Anxiety disorder, h/x of eating disorder. Counseling suggested.” put in my chart.
“You just need some gentle exercise.”
“You just need to find a hobby.”
I have put myself through:
TriggerPoint Injections (still do. Sometimes they actually do help)
Nerve conduction studies in both arms, twice
massages twice a month (GOD I miss Susan, my massage therapist)
Deep Breathing exercises
Cervical Steroid Injections
& Radio-frequency Ablation for C6-C7 (twice)
All before they would consider any kind of drug therapy.
Then I had to run the gamete on all the different SSRI’s, SSNRI’s, and SNRI’s . I failed every 2 week trial. Sick as hell and exhausted, I would crawl back into my doctor’s office and plead with him to change my medication. Every time I had symptoms of Serotonin Syndrome. But I didn’t know it then. (I DO NOT do well on any kind of SSNRanything.)
Then it was Lyrica (pregabalin). Not bad, it worked (sorta), but I gained 30 pounds and my cholesterol shot up to 260 total. So I tapered off that and we tried Neurontin (Gabapentin). Which wasn’t bad, but the higher the dose went, the closer I had to be to my toilet until I finally cried “uncle!!” and told my doc I was afraid to leave the damn house!
This brings us up to 2010, when I moved to Merryland. I landed in the clinic of my new primary care with all of these records and she:
1) Immediately put me in for EFM (Exceptional Family Member status for the families of active duty.) (side note: I got EFM5, if you know what that means you get it. But Chief is retired now, so it doesn’t really matter anymore.)
2) Filled out all my paperwork to get me a disabled placard. She was incensed that no-one else had handled that based on my hip replacement alone.
3) Filled out the paperwork that would allow me to ask for my student loans to be discharged since I now was “officially disabled” and could not work.
4) Referred me to an actual pain management clinic for the first time.
In 2011, I was under some form of anesthesia 13 times for procedures. One for a cystoscopy, the other 12 for various shots into my C-spine. So, anyone can see that I was willing to put myself through just about anything to try to feel better.
Late 2010, early 2011 is when I was finally allowed to have long term pain medication prescribed to me.
Now, I have 6 monthly prescriptions from my pain clinic and neurologist. Three of those I physically have to go pick up the prescription and take it to the pharmacy. Everything is tracked and followed. My doctors and my pharmacists work with me and everybody reports everything to everyone else AND the insurance company.I follow all their rules, jump through all their hoops, never miss or reschedule an appointment with my pain clinic, and I submit to urine tests when mandated.
I follow all their embarrassing, humiliating, difficult rules and jump through the hoops because the pain meds I get allow me to function most of the time. They allow me to run my house and homeschool my child.
That’s all I want to do is live my life, so I play their games.
THIS is the face of a chronic pain patient:
Trigeminal Meningioma, left side diagnosed 06/2014 ; Congenital Hip Dysplasia corrected with a Birmingham total hip replacement 11/2007 ; Migraines, Trigeminal Neuropathy, Fibromyalgia, and nerve damage present in both arms.
I am not an addict. I am not a junkie. I’m a mother, a sister, a wife, a best friend, a daughter. And I just want to try to live the life I have left. And I need my meds to try to do that.
The general consensus is 2016 can go fuck itself. And I have to say I’m inclined to get on that bandwagon.
I have had a thing pretty much all year that we (me, my family, and my herd of doctors) have been trying to decide if it’s a thing or not. The prevailing opinion as of right now is…..yes, it might be a thing. But not, like….an easy thing. Mostly it’ll probably be a thing that ends with me, Xun, dying in a stupid way.
I choked way back in February. On chocolate milk, of all things (if you’ve been following The Cris Show for more than a minute you already know all this). February 16, chocolate milk, fairly late in the evening, hubs was out of town, my oldest was there. Fun stuff. I figured I hemorrhaged a vocal chord because I choked pretty….good? well? hard? severely? I choked a lot. And for several minutes.
My voice was gone. MIA for 2+ weeks. And I spiked a fever of 101 two days later. So I saw my pcm who checked me out and got a throat culture. Then I saw my neurologist the following week. She noted it in my chart and confirmed that the fever indicated that I had aspirated the frickin chocolate milk and my body responded.
February rolled on into March and I was still sick as hell. Like losing 15 pounds sick. For some bizarre reason the lab lost? or ate? or…..didn’t bother following up on my throat culture? But I finally got a phone call on March 14 ( yes, a MONTH later) saying my throat culture came back and I had MRSA.
Seriously?! MRSA?! (Side note, it’s fun to see the doctors react to me saying I have/had MRSA.) Oh, goodie. I’m allergic to 3 families of antibiotics. Let’s do this.
Two rounds of antibiotics later, I retested and came back clean. Finally. This is 3rd week of April-ish.
But the cough never really went away. I have had this random cough with an even more random productive cough since February. Allergy meds. Inhaler. “Just wait it out.”
Noted in my chart in August for a yearly physical. Yep, still there. Allergies? “But are you dead yet?” (Okay, no, she didn’t really ask me that.)
The year drags on. The stupid coughing and random losing my voice and another choking incident.
Back to the pcm in October. Because I’m still coughing. Stupid lungs. Stupid body. Stupid brain tumor.
I’ve seen my pcm, my neurologist, an ENT surgeon, a pulmonologist who sent me back to my neurologist…..and that’s where we are.
Pcm says see pulmonologist. Pulmonologist says it’s neurological and likely related the the asshole tumor sitting on my left 5th cranial nerve. Back to neurologist this morning and the next step is a modified swallow study.
Stupid tumor. Choking on chocolate milk is a stupid way to die.