Category Archives: news

I’m Still Here

Holy timelines!! Has it really been a month since I last posted?! I knew I haven’t been writing much, but I didn’t realize it had been close to 5 weeks. Sorry, I’m alive. If you follow my Instagram or my blog’s Facebook page, you know I’m still posting. I just haven’t been writing lately. Anything really. I’m barely even journaling much right now…

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Since my last post, I’ve made one of our annual pilgrimages to our state’s RennFest. Opening weekend usually falls on or about my oldest daughter’s birthday and my family is a bunch of nerds so we go every year for her birthday.

Yes, that’s me in full garb. It’s taken me 5 or 6 years (and I have a couple of outfits) but yep, we show up in head to toe 16th century clothing. We usually go at least twice. Once for opening weekend (for K’s birthday) and once in October, the first weekend if we can swing it, for our anniversary because we got married October 2nd.

My youngest child has started her sophomore year in high school. And my son came home after 3+ years. And my husband is currently working on possibly changing jobs if everything lines up well. It’s been a busy month!

I also saw my neurologist and pain docs. Neurologically I’m stable and she pushed my annual check-the-brain-tumor MRI in July, but I’ll probably have a scan in November or December because I’m mostly stable (and I haven’t choked in quite a while, knock-on-wood, #dysphasiaisabitch ) but if I get overwhelmed my ability to remember anything or put a sentence together goes out the window.

I saw my pain docs and talked to them about the pain in my right hand (inspired by Wendy’s info) and they agree it’s probably De Quervain’s tenosynovitis. She chose to treat it first with a brace and Flector patches (diclofenac, an NSAID). I am really, really dominantly right handed so I sleep with the brace on. But when I slept with the patches on my right wrist, I woke up feeling like I was having a hard time breathing. Turns out there are associated cardiac risks with Flector (and I’m allergic to aspirin) so that was axed. I tried Lidocaine patches too, but they actually seemed to make it worse. Fortunately the brace seems to be helping and my pain doc has decided to wait on injections or referrals. It feels like a slow process to treat something they can actually fix, but one thing at a time, right?

I also talked to my pain clinic about the possibility of medicinal cannabis or even just CBD oil. Because of the meds I’m already on (and even though my state is finally getting on board with cannabis options) I would only be “allowed” topical CBD oil with prior notice. Anything else would fall under a “transference of care” and I would not be allowed to continue my current meds and be transferred to a doctor in this state that issues licenses for cannabis. So….yes, we’re making progress. No, it’s not easy. No, it’s not really a good option for me right now. I wish they’d allow me more time to work with stepping down off some meds and onto others, but I didn’t get the impression that was an option yet.

Tomorrow is one of the annual Navy events we try to go to, so I get to get all dolled up and go to a (semi)formal event tomorrow night. Next week is my 19th wedding anniversary. My youngest is up to her eyeballs in chorus and theatre (which means I’m sort of up to my eyeballs in stuff, but the school musical isn’t until Spring so I’m not quite up to tech week insanity. (If you know what that means, you get it.)

So, yes I’m still here. Juggling monkeys and handling stuff. Gentle hugs and hope you guys are good!
~ Xun

 

 

/sigh

I’ve had a shit day. I realized I have been pretty quiet as far as blogging goes lately and that pretty much because I am stable, and other than the normal day to day, there’s not very much in my life that’s worth writing down and sharing.

I mean, because Wendy ( Picnic With Ants) shared some of her story about the pain in her wrist and thumb I was able to do some reading and figure out my symptoms matched hers, but not necessarily the intensity so I have been waiting to see if it resolves on it’s own. I have an appointment with PCM DR Traffic-Director tomorrow and it’s still there just enough to be a bother, so I think I will bring it up with her tomorrow.

I also checked my labs so I knew what was going on before I see her, and found that my numbers are actually pretty good! The only discrepancy I see might mean my synthroid dose just get bumped up a tiny bit, but that doesn’t actually surprise me since my thyroid disorder is autoimmune.

But none of that is related to my shit day…well, mostly. Appointment with Dr Traffic-Director was scheduled for tomorrow because 1) It’s time for my yearly physical 2) the doctor I have been seeing is active duty and getting orders to rotate out next month (if you’ve ever been in the military clinic setting for your primary care, you’ll get that) and (3) because I have been informed that the clinic is instituting a new “program” for chronic pain patients.

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As part of their new Pain Process Protocol Program (seriously how many fucking hours did you schmucks spend around a table in a boardroom to come up with that one?!?!) I have been “issued” a prescription for Narcan, I get a new case worker (oh goody.), and I have to check in with my primary care doc every 90 days.
1. Yeah….that prescription ain’t gonna be picked up.
2.My “primary care” is a joke, they rotate out every 3 years. We retired here. I’ve been with my  same pain specialist for over 6 years and I already follow all their rules and jump through their hoops (new contract at the beginning of the year, random urine screenings, seeing them every 8 weeks, fill all my scripts at the same pharmacy, I am only given 30 days of meds at a time, so my meds have to be refilled every 29 days….
I am stable, compliant, and my doses haven’t been changed in several years.

So fuck you guys and your Narcan, and your 90 days, and your case worker.

You’re about 6 years too late. I have been with the same pain specialists for over SIX years. And allll those things we get told to do before or instead of pain meds; I DID THEM.
Every formula of the SSRIs, SSNRIs, and SNRIs out there; acupressure, acupuncture; Reiki, Biofeedback, physical therapy, “gentle exercise”, occupational therapy, yoga, talking to at least 2 shrinks, trigger point injections; massage therapy; Lyrica, Neurontin, ….you name it, I tried it. I had to trial and fail every other option before I got any narcotic pain meds. It was not easy. It was probably a 5 year process. I also even underwent light anesthesia (propofol) 13 times in one year for spinal injections and a rhizotomy.

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NOW, six years later, when I am stable and compliant, and my only “risk factor” is that I take narcotic pain meds; you fools want to stick your nose in. My primary care is just a traffic director….issuing referrals. My case is difficult and complex, and the people that I see the most (pain doc & neurologist) KNOW me. They know me and my case.

I did not accept the “script” for Narcan, I didn’t answer my phone when my “case Manager” called. Go away. And take you stupid PPP Program with you.

4 Years

Four years ago, within 30 days…
We signed the contract to have my house built, my dog died, and I was diagnosed with what ended up being an inoperable brain tumor.

I’m now sitting in the house I designed and we have just painted the downstairs bathroom, put new curtains up in the office, and gotten new (to us) living room furniture! Three years into living in said house, we’ve been slowly working our way through painting rooms, and fixing up stuff that we’ve shlepped around from duty station to duty station. This summer we’re planning on painting my daughter’s room and the spare room, and painting her desk as we move some of the furniture around upstairs.

My puppers is on my mantle in her pretty little oak urn with her collar around it, and someday we’ll plant her ashes into a tree in the yard.

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And my tumor is still there, still inoperable, and still the same size and shape. It’s still a journey, but I am mostly stable.


I wrote this a couple of weeks ago, then set it aside for the Great-FreakTHEEFFOUTTTTT of 2018 when my pharmacy miscounted my long acting pain meds and I freaked the FUCK out because I had visions of the pharmacy to tell me to figure it out, my pain docs to tell me to keep better track of my scripts, and no pain meds = no Xun. It wasn’t a  great 12 hours and I realized how close I am to the line of not deciding to live in chronic pain.

It was solved quickly and relatively easily….moving on….

I’ve been thinking about how much I blog. It’s not as often right now. I started a blog back in 2009ish? It’s gone through some changes and at least one major move from one platform to another. The last four years have focused more on the tumor near my brain stem. It’s ….. stable? Mostly. The tumor is the same size and shape as far as we know. But the effects of said tumor have progressed. I have dysphasia, confirmed via swallow study. (kind of a weird thing to go through) Aphasia when I completely lose words in the middle of sentences. Those may be connected to absence seizures. But I find I forget names of things, people, places….it’s easily the most frustrating thing about my current existence. (I spend a lot of time muttering to myself “I’m a frickin *writer*, I NEED words!!”)

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I’m rambling but basically it’s just thoughts about where I’m at right now. I’m medically stable. No more turning my life upside down and moving every year. No more waiting for orders or duty stations. I don’t fight with…well, anybody anymore. There’s just not the fight in me.

Right now, my life is my kid’s school and theatre group keeping me busy, and now that she’s on summer break, I’m just juggling house, kitties, her activities, and my mother coming for 10 days. My doctor appointments pick back up next month. I had a nerve study done of my left arm because I was having pain in my ulnar nerve and numb spots on the back on my hand, my index finger, and my thumb. In the ENS they tested motor nerves and there’s something going on in my forearm, so I asked them to send the report to my neurologist and I see her again July 30th.

Right now, my life is fairly stable. June 23rd was the 6th anniversary of my Dad’s passing.

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My kid keeps me busy. I probably don’t blog more often because I don’t think I’m very exciting right now.

But I did have a really vivid dream the other night that I’m thinking about writing about. It made me miss someone…..but it would be a great movie…

 

Even More Updates!!

April was nuts. I’m still trying to remember all the things and the stuff and the sharing…

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I live off my desk calendar

Rehearsals, a concert, prom, tech week….

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P!nk was amay.ZING!! And worth every penny for the not-exactly inexpensive tickets! Seeing her was bucket list stuff!

Four weeks of rehearsals for the kid because her school was (is …we have 2 more shows this weekend, and I’m finishing the editing of this post on Saturday afternoon) performing Anything Goes.

 

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Rehearsals were 4-5 days a week, weekends were set builds, and one weekend was a dance intensive workshop to work on choreography. The kids have worked their butts off and it shows! They have put together an incredible show!

We got through the ….um, “stupid” business trip and my husband got back on April 4th. We jumped right into April insanity; meaning 5-6 days a week of rehearsals, me interrupting rehearsals on April 17th to drive up to DC to see my favorite show EVAR, prom on April 21, and then right into tech week. “Tech week” means full dress rehearsals and long days the last week of April. I volunteered food and serving the cast and crew, the band, the faculty, and the parents and volunteers two out of the three days.

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Social Xunnie ; being helpful & feeding teenagers Photo: Ramon Tuazon

Watching how many parents and teachers step up and volunteer to support the show is inspiring. They’re working HARD.

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Seriously, I live and die by my desk calendar. Tech week

In the middle of tech week, we HAD to get tickets to squeeze in seeing Infinity War because we’re a household of hopeless geeks and I flat out told my kid I have to see it or stay off the internet until we do! Fortunately, we we able to find tickets for an 8 pm showing on Thursday night. (& we squeezed in a matinee on Saturday)

No spoilers. Don’t @ me. I’ve seen it twice so far. I won’t ruin anything for anyone else. 😉
But we will be seeing it again. Apparently we’re masochists.

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spoiler free commentary

Finally Friday, April 27 was opening night!

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I am so proud of these kids. And I can’t even begin to describe how grateful I am for the teachers, staff, directors, and parent volunteers giving up all the time and work for this production. The kids have worked so hard and *my* kid is ecstatic about the chance to perform and all the support.  This is me gushing because this is a new chapter for my youngest and it’s awesome to see her doing the next thing and loving the experience and support she gets.

We’re closing out a long and busy couple of months. One three-week-long business trip, one snowstorm, 4+ weeks of rehearsals, three gun incidences in our schools, one trip to New York, one P!nk concert, six high school musical performances, and one blood draw (yesterday) for new Cobalt and Chromium levels for my ortho surgeon when I see him again in just over 2 weeks.

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Gentle hugs, a couple of deep breaths, and and 2000 words later it’s time to move forward. May is Brain Tumor Awareness Month! #gogreyinmay

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❤ ~ Xun

 

Overdue Updates; Part II

So, in the six weeks I haven’t sat down to share with the group, there’s been a lot of crazy stuff (see previous post) and a lot of really awesome stuff. And… well, really just A LOT.

I went over the big, hard stuff already (and as I’m writing this, everything hurts and I’m really sore for some bizarre reason today), but I have some insanely cool stuff to share too!

(consulting calendar & notes)…
so…in addition to the stuff that put us on the national news in the last 2 months, we’ve had a bunch of good stuff and busy stuff and…well, I’ll just try to get on with it shall I?

My youngest got the chance to go on a school trip to New York City in March! They got on the bus at beforeGodgotup o’clock on March 23…

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The theatre group spent the weekend in NYC and got to see Waitress, Hello, Dolly! and Kinky Boots! They also had a workshop on stage combat techniques, visited Central park, Times Square, and Little Italy. It was a crazy whirlwind weekend and I am so grateful that the school got to pull it off and we could send our kid to do it!

My husband was sent out of the country on a work trip in March so I was juggling school shooting news, kid trip, and a snowstorm by myself for a bit. Oh! And updates with pain doc and neuro. I’m stable (mostly) and getting blood drawn this week to check cobalt and chromium levels before I see ortho surgeon again on May 22. In the midst of the insanity of the last 2 months, at least medically I’m stable and managing.

The most interesting things lately are just the dysphasia occasionally deciding it wants to flare (but I’m learning to manage it…did you know if you tuck your chin it helps when swallowing?) and my hip pops occasionally but I haven’t fallen and I am stable when walking. My rule is “I can go far or I can go fast … pick one”.
But medically, at least, I’m not very interesting lately. For now.

The best and coolest thing this year is I got to go see P!nk!!! This was bucket-list stuff and she is one of my favorite people on the planet. I even have lyrics from one of her songs as a tattoo…

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I got to take my daughters and see her April 17th in DC…

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It was amazing and she’s incredible! She opened the show hanging from the chandelier!!

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I tried to remember the songs she did…

Get the Party Started
Beautiful Trauma
Just Like a Pill
Who Knew
Revenge (which included a giant inflatable Eminem)
Just a Girl (No Doubt cover)/Funhouse
Teen Spirit (Nirvana cover)
Secrets
Try
Just Give me a Reason
I’m Not Dead
Just like Fire

…which was INCREDIBLE!! We were close enough to feel the heat from the fire effects…

What About Us
Perfect (see previously mentioned tat)
Raise Your Glass
So What

she literally flew across the entire arena!!

and she finished with Glitter in the Air.

It was an amazing show and the best concert I’ve ever been to and how much do I love the fact that my youngest’s first concert was P!nk??!!

April has been insanely busy, 4 solid weeks of rehearsals, tech week (aka: parents bringing in food and doing set builds because the kids are working until 8 pm), the kiddo’s first major high school musical production, prom, P!nk’s concert, and the opening of Infinity War because we’re a household of Marvel geeks.

Looks like I need to actually write up a third update!

 

Very Overdue Updates

I have literally been meaning to write an update for over 2 weeks, and then I got a comment giving me the “hey, you good? you needa post” and I realized how unbelievably overdue I have been for blogging. I’ve been working on a post in my head for the last 10 days (ish), but it seems I don’t have Jarvis to translate that noise into an actual post. Who knew?!

So….um, where to start? My last post was me losing my ish over a school shooting here in our little rural we-have-Amish-buggies-sharing-our-roads and it brought everything up close and in my face.

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ABC News

 

That was immediately followed by the National Marches…

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friends & loved ones are in there….somewhere

…and a lot of noise and conflict across the country. I know people on both sides of the debate and having spent the last 4 years or so teaching my kid American History I understand the need for debating this issue. But then…

Just 3 weeks after the March for Our Lives (March 24, 2018) an 8 YEAR OLD was arrested for bring a loaded handgun to school on April 18, 2018. IN MY COUNTY. In my little corner of rural small-town America. And I lost my shit.

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THREE gun events in our little county. In. ONE. School. Year. so far.

That is not okay. I am not okay.
The first one: two students being arrested for threatening to shoot up the school MY kid goes to just 2 days after the Parkland shooting. They were heard and reported and it was stopped, but how terrifying is that?!
The second one: The shooting at Great Hills High School. That affected us up close. There’s only three high schools in our county. 1400+ kids were evacuated from GMHS to LHS for reunification. Jaelynn Willey’s loss affected us all. We’re a small community and the shooting was an unimaginable shock.

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I walked out of a meeting at my kid’s school and saw this on the wall. It took my breath away. 

The third one: an 8-year-old being arrested for bringing a loaded handgun to school. A third grader. Both parents are active-duty military. A girl on his bus saw it and reported it.

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The kids are being told over and over and over again “See something, say something” and they did and it stopped two tragedies this school year. But it is breaking my heart. We’re scared. We’re frustrated. This is insane.

February 16, 2018
March 20, 2018 (Jaelynn was taken off life support on 3/22/18)
April 18, 2018

These are the dates that affect us right here in my town. This is a nation-wide debate but right now it’s up close and in my face and I can’t breathe and I don’t know what to do.

In the last month I’ve also had a lot of really awesome stuff keeping me busy and I’m going to write up a part two to the updates and try to get that published tomorrow. But it’s been busy and crazy and hard stuff is in my face and this hurts and whattheHELL?!!!

Yes, there’s lots of good things and experiences I’m going to share. Yes, we have been lucky and my child is safe but I’m processing.

More updates being written and I promise they’re the good stuff!
❤ ~ X

 

Stress & Other Drugs

I get really quiet when I’m going through something. Usually when my physical pain is climbing or my stress levels are raised…..or life starts kicking back, I’ll write less. I don’t even journal as much as I know I should. Writing creates a pathway for me to find my way through the pain…..well, most of the time. I know I should write more, but I guess it’s a defense mechanism not to. But the positive side is when I do start writing again, I know I’m finding my way back.

The last week in particular has been pretty stressful. My SO is on some crazy business trip to somewhere to do something. The details are fuzzy and the leaving was mostly just 24 hours of whattheactualfuck, and then he was on a plane. I have a pretty general idea of where he is and when he could return, but in the interim, I’m dealing with all of….well, this…..by myself.

The Parkland shooting happened on February 14 (as most of us know). What you may not know is that by February 16, we saw two boys arrested for threatening to shoot up my daughter’s school. On the heel of these incidents I saw my daughter, her friends, and my friend’s daughters say things like “I’m wearing my running shoes today (instead of my cute shoes) in case we have a shooting” ; “Mom, remember what I’m wearing today in case my head get blown off”; “If I hear shots I can jump out that window and run away from school property”. Yes, I heard these all said. No, they weren’t trying to be funny or smartasses. Or waaaayyy too irreverent. This is their reality. They’re scared. And now they’ve had enough. On March 14, my daughter wanted permission to participate in the walkout. Of course I said yes. They’re standing up, and speaking out. They deserve to be seen and heard.

SIX DAYS later, on March 20 there was a shooting at Great Mills High School. Every school in the county was immediately locked down, and the GMHS students were transported to LHS (my daughter’s school) to be reunified with their families. The shooting was just before 8 am, at the “other” high school, but everything about that day went sideways. LHS was safely on lockdown, but classes were moved around and schedules changed to accomodate for the 1400+ students coming to this school.

Kids from LHS were signed out by their families so they could wait with their parents for family and friends that would be coming from GMHS. It was a little busy, but it was handled with amazing ability and compassion from all of the teachers and staff, the students, and the first responders. Somehow, we made it through that day.

The next day Winter Storm Toby hit the East Coast, and my kid and I hung out at home and watched several inches of snow fall. It felt like the universe gave us a minute to breathe.

By Thursday, school started back up for LHS (Great Mills will be back April 2, after Spring Break). And on Friday I got up at 4 am to drive my kids over to meet her school’s tour bus for the Theatre Group’s planned trip to NYC for the weekend!sbc-nyc

So….to sum up my week: Monday, normal; Tuesday, school shooting; Wednesday, snowmaggedon; Thursday, 2-hour delay for school, otherwise normal day w/ play rehearsal after school, Friday, @ the school at 4:45am to meet the bus for the trip to NYC!!

Saturday: March for Our Lives Marches happening in 800+ cities in the US and around the world. I’m proud of these kids, and I’m supporting the effort 100%!

I’m dealing with a lot by myself right now, but I’m dealing! Which means trying to be protective without throwing a fuckit bag into my car and driving for my mom’s house in California. I’m dealing with it…..tearing up at the news, but trying to be strong.

Until.

Until I logged into my FB tonight while watching one of my favorite movies (Love & Other Drugs….seriously, it takes a look at life with a chronic, progressive , incurable illness, and tells us we are not alone. Watch it! 😉 )

The first post that popped up was a friend who lives here, who went through the fear and hurt this week, who has friends at GMHS, who gets what this is like going through this with your high schoolers. They might be taller than you, and (in her case) getting ready to leave for collage, but they are still your babies!

To borrow a few of her words, she wrote “From the time my children were handed to me, my purpose in life has been to make sure they are safe.” She talks about car seats, and holding their hands to cross the street……and monster spray.

That’s how far I got before I just sat down and finally cried out the week’s fear, and hurt, and anger, and uncertainty. I set down my tablet, and I just cried out everything I’ve been needing to cry out for days….maybe even weeks. I sobbed, and I allowed myself to cry however I needed to, for as long as I needed to. And then as I shlepted myself over to the powder room to get more tissues, I realized my whole face was wet, as was one of my pj pants thighs. So, I sat there, and tried to breathe and come back to center and I realized S’s post said “monster spray” and that’s what opened the gates.

I have done everything in my power to keep my babies safe. Cribs, playpens, carseats, bed rails,….and monster spray. K and D, my two oldest, are 18 months apart. So if one or the other had a scary dream, or was worried about monsters under the bed, we  created ” Monster Spray”. Pretty little pump spray bottle, looked pretty, smelled good. No monster guarantee.

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close approximation of ours

 

It took me a little bit longer, and a couple of tougher experiences (stories for another time) for me to finally have my little Bug. She’s my Rainbow Baby, and her big sister is as protective over her as any momma you ever met!

But after this week, I couldn’t scare it away with monster spray. I couldn’t shield her from it, or change it. She marched last week. She saw it happen. She’s speaking out this week from New York. She blanketed all of her social media with #ENOUGH #enoughisenough #neveragain

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I’m proud of her. I agree. NEVER AGAIN.

All of the fear and stress……..I guess I just needed to cry it out. She’s safe, we’re okay. But OH! my Marvel!!! It has been hard!

**deep, deep breath** (This is why I have “ana’laigh” tattooed on my left forearm, Gaelic for breathe.)

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Just….breathe.

And tell the people in your life you love them!! ❤ ~ xunxun

Oh Shit.

The last week has not been easy for me. I watch as the country gets torn apart from the latest massacre. The kids are going to speak to their state legislatures today, for which I am incredibly proud of them and in awe of their strength and their fight.
More are heading up into DC.

They’re not wrong. When is enough ENOUGH?!

I’ve watched the arguments and the fear spreading across the country. Family, and friends, and acquaintances, and perfect fucking strangers fighting like hell on the internet and in person. Demands for NO MORE DEATHS. Arguments for second amendment rights. The right and the left slinging nasty words at each other.

That’s not doing a damn thing and today….right now. I don’t give a fuck about the arguments anymore.

I didn’t sleep last night, and what sleep I got was punctuated by nightmares. And then I get this news today:
Students arrested for threat of mass violence.

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WJLA Washington, DC ABC News

That. IS. MY. KID’S. HIGH. SCHOOL.

That post yesterday? That fear? It’s real.

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ENOUGH IS ENOUGH.

Check Yourself

Like the rest of the US I have been watching the news over the past 5 or 6 days and trying to figure out what to say….or do…or think. 17 more dead. This is not okay.

I sat here this morning catching up on news and social media and I came across a friend of mine’s Facebook post about sending her daughter off to school this morning. It was just a quick blurb inviting thought by sharing that her daughter said “remember what I’m wearing in case you have to identify me.”

I had tears in my eyes and I had to catch my breath. Her daughter goes to the same high school mine does.

.

I live about 9 miles or about 15 minutes from my daughter’s high school because we live in a pretty rural county It’s middle America. (Seriously google it….”Middle Earth” pops on my zip code)
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There was an incident several years ago at this school. Yes, even all the way out here, we had a “threat”. I didn’t have any kids in the school at the time, but I watched the news coverage as reports of a handgun in a student’s backpack prompted a lockdown of the high school, the tech center, and the middle school because they are all essentially one campus. The parents could not get to their kids and gathered at the county fair grounds across the street from the school.

Tears in my eyes as I tried to imagine NOT being able to reach my child and protect them. Anybody that knows me knows I am a Mama Bear. DO NOT mess with my kid. Do not threaten my kid. Do not get between me and my kid. I will hurt you.
My oldest was in a car accident almost 2 years ago. I got the phone call and pulled up to the accident scene in less than 10 minutes. (To be fair it was about 2? 3? miles away)

But I have never forgotten what that felt like to watch these parents stuck on the other side of a 4 lane highway (I use highway loosely….main road?) unable to go get their kid in the middle of a lock down.

So when I read S’s post this morning, I stopped. Time stopped. I couldn’t breathe. Because that is a horrible truth. That is an unthinkable truth.

This has to stop. #NeverAgain

I’m watching my country, my family, my friends, my acquaintances, people I care very much about, and people I’ve never met argue over opinions, fault, policies. This is insane.

Do you get that?! This is crazy. We are supposed to be a First World Nation. We are supposed to be The American Dream. If you work hard enough you can have anything, remember that?? Milk and honey and opportunities.
But we have more gun violence, more deaths, more fear and threats than many Third World Nations. People are afraid to visit the US because they’re afraid they will be shot like in the Wild West.

But Xun….2nd Amendments? Individual rights? Who are YOU to tell me what I can and can’t do?!

To that I say, Check Your Privilege.

I thought about this a lot over the last few days. I am white, middle America, middle income, living in a house we built 3 1/2 years ago, standing in a shower in a bathroom I designed, crying this morning because time stopped for me as I thought about what to say or how to write about this. Suddenly  it was 2 years ago when I lost my sister, or 5 1/2 years ago when I lost my Dad and I was standing in the shower trying to figure out how to live in a world without them.

Because 17 funerals are being planned right now. Do you get that? 17 people that did nothing more than get up and go to work or to school last Wednesday, that didn’t know the shooter from Adam, are now gone.

BUT…

I am watching the next generation, the survivors, stand up and say NO MORE….

Emma González is amazing and brave and strong. And I am watching the news of her and the other students, the other “kids”, organizing a fight for #NeverAgain. Speeches, walk outs, marches. These kids and their community are fighting for everyone else. No more mass shootings. More deaths. No more sense acts of too many people dying in one day for what?
NO MORE.

 

Marjory Stoneman Douglas High School Students 

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I debated what to title this post. Because I’m watching the news and the debates on social media. What do you say? How do you talk about it? It’s been almost 19 years since Columbine and can you say anything has changed?

17 funerals, memorials, celebrations of life being planned. 17 people gone. 17 more gone. In an affluent suburb in Anytown, USA.

So check yourself. Check your privilege. But for the Grace of God go I.

 

 

Lazy Xun & the Updates

So…..um, hi. It’s been a minute. I can honestly say I have been meaning to sit down and write out an update since my last post was…..um, a minute ago.  But I plead that we have had 3 birthdays, 2 holidays, 1 school play, 2 auditions (the kid), 1 school break, 2 doctors appointments, 3 scans….and a partridge inna pear treeeeeeeee!

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Overwhelmed by holidays and birthdays and general end-of-the-year insanity, I kept meaning to send out an update, but when I had time, I didn’t have motivation. And vice-versa. I kind of managed to get through holiday insanity this year, but I’m not really sure how because it felt like I didn’t have enough time or my act together. But….we made it.

So. Updates. I actually have something.

My yearly check-in with Dr. PCM-Traffic-Director last summer lead to follow up labs 3 months later in November, and surprisingly Doc added Cobalt and Chromium checks to my labs. B12, Iron panel, TSH, T4, CBC were all pretty good. Most of my levels have stabilized since the MRSA mess of 2016, and thyroid levels meant no change in my Synthroid dose. But my Chromium and ….well, mostly my Cobalt levels sent doc to an ortho surgeon referral.

I have a giant hunk of metal for a left hip. I’ve covered that pretty extensively in the past…

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new hip, 2007

…and November 19th was the 10th anniversary of my hip surgery. Diagnosed in my 20’s, snarled at and told to lose “as much weight as I can”, and several ortho docs attempting to get me close to my 40th birthday (I had the surgery the day before my 34th birthday) later, I got a shiny new hip.

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My docs have just started watching my cobalt and chromium levels in the last 4?ish years and I have learned that there’s:

  1. normal cobalt and chromium levels
  2. high cobalt and chromium levels
  3. implant level cobalt and chromium levels
  4. high implant cobalt and chromium levels

and unfortunately us implant patients pretty much all eventually end up climbing the ladder.

Right now my Chromium levels are acceptable (2.0: 0.1-2.1 mcg/L serum), but my Cobalt levels are creeping up (2.3: 0.0-0.9 mcg/L serum), so off I went to a new ortho surgeon.

Ortho docs like my case. They get to learn from me and I’m a pretty unusual case. At this point it’s labs and x-rays, basically yearly. I have a whole file I keep with my op report, yearly scans, etc. Ortho doc went over my case, read my file, checked my labs, examined me, and sent me down for this year’s scans.

Two things popped up this year.

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One: it seems pseudotumors can pop up around the implant area, and my cobalt levels indicate that may be the case with me. He found one spot in particular to watch, but conceded it could reabsorb on its’ own, or it could just be bowel gas. Options for further studies include a higher level MRI to account for the affect from the metal or an in-office procedure to get a sample from my hip to test cobalt levels. I told him “That does NOT sound like fun.” He just looked at me.

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hip, 2017

Two: I have Myositis ossificans (calcified muscle tissue). Huh. I didn’t know that could happen.

So, after I told him shoving a giant needle into my hip joint wasn’t my best idea for fun, he conceded that he could check my levels again in 6 months and we can go from there. He seems pretty good, and I like him. I think the only argument we may have is if he decides I need a revision. I’m not really open to hip replacement revision surgery. That’s why I had the surgery I did 10 years ago. But it’s really interesting that most people just assume I would have the surgery.

I guess we’ll see…the story continues in June….