Category Archives: chronic illness

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

 

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

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….

Hip Hip Hooray!

So in spite of my best efforts to ignore anything that even remotely resembles a birthday, my mom called me today to remind me I have a birthday tomorrow. We disagreed about exactly which birthday it is. Suffice to say we’re (read: I’m) going with I’m 36.95 plus shipping & handling.

BUT one thing we can agree about is 10 years ago today I had my hip surgery! A cutting edge, new, all-metal hip replacement designed to last the rest of my life. At the time of my surgery, it had only been FDA approved for about 14 months, and from what I can tell, it is not done much, if at all, anymore. And I was unbelievably lucky enough to have the #2 U.S. surgeon, who had, in fact, traveled to Birmingham, England to train on the surgical technique!

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So today I celebrate that I have a hip I can still walk on, and I am grateful every day for that ability!

Whether or not my brain tumor is related to said hip implant remains to be seen, and they just drew Cobalt and Chromium levels last Thursday, so I will keep you up to date when I get the results. I already know my chromium levels are high, but they’re normal-people high, not implant-patient high. Or at least they were 2 years ago.

Whatever. Ya’ll ain’t getting my implant back. I am not open to a revision surgery. It’s really damn hard to learn to walk again in your 30’s.

Side note: also, 15 years ago I was within 12 days of delivering my youngest child, my Rainbow Baby, my miracle I went through Hell and high-water to have.

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And the last thing to share this week is that I got to do a bucket-list, incredibly cool thing last Friday night. We went to the Kennedy Center and got to see FLUFFY!!! (Gabriel Iglesias!) (& if you know who that is, you know how funny he is!)
I don’t think I have ever laughed as hard as I did at his show. I had tears rolling down my face, bright red (thank goodness for awesome water-proof mascara). It was one of the best things I’ve gotten to see!

We had awesome seats, second row, stage right.

So, Happy Birthday Hip. I got to see Fluffy. And cobalt & chromium levels coming this week!

 

*gentle hugs* ~ ❤ Xunnie

What About….

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…

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…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.

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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

 

It Hurts

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?

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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.

The Next Thing

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.

EXCEPT~~~~~~~~~~~~

My youngest daughter starts high school tomorrow and I haven’t quite figured out if and/or how much Imma freak OUT.

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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

Labs and Crap

Time for my “yearly physical”…..bwahahahaha. Yeah, I know. As someone that sees a doctor no less than every 8 weeks, it cracks me up when I have to go see my primary care traffic director every year. She likes to pretend she does more than bitch about my labs and direct referrals, but we know better.

She’s young and in her defense she’s only had me for a patient for about a year and a half and I’m a pain in the ass. It’s not her fault that she’s in over her head…she wasn’t even in med school when I had my hip replacement.

I went over to the lab like a good girl and had them pull my fasting labs last Monday morning so that she had everything before I see her Tuesday afternoon. They pulled 7 vials out of me!! Pretty sure I should have had a cookie before I drove home, but the good news is I am a super easy stick. No rolling veins or tough spots to try to find. And everything went smoothly, so I’m hoping I was the easiest patient that lab tech had all day.

So of course I had to log into the patient portal and get my labs so I can analyze them before I even see her.

My TSH and T4 levels look like they might have to raise my Synthroid dose. But they’ve been creeping it up for over 10 years. I’m not surprised. It is autoimmune thyroid.

My metabolic panel looks pretty good. Hemoglobin and hematocrit are just barely low, but they’re good for me. Vitamin D and B12 are really good! Yay me for taking my vitamins!

The biggest thing I noticed was my GGT is still high but nothing like it was last year. (I did have MRSA then!) And it’s trending down.

And I got a hold of my Cobalt and Chromium levels from last September and of course they’re high, but they’re normal people high, not MoM implant high. And honestly I don’t care. I’m not open to revision surgery. November is my 10th anniversary of my hip surgery, so the way I see it I’m doing pretty damn good.

More updates after my appointment this week!

 

The Leibster Award

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!

liebster-award

The rules for the Liebster Award:

  1. Acknowledge the blog that nominated you and display the award
  2. Give 11 random facts about yourself
  3. Nominate 11 blogs
  4. Notify them of the nomination
  5. Give them 11 questions to answer

 

11 Random Facts About Xun

  1. I am an only child.
  2. I have three kids of my own.
  3. 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.
  4. I am a writer and had some of my work published in a book of poetry in 1999.
  5. I have 13 tattoos and 7 piercings.
  6. I was the first woman in my family to go to college since my great-grandmother.
  7. I have lived in 8 states.
  8. Alice in Wonderland is my favorite story (which lead to Xun in Wonderland!)
  9. My first car was a little ’78 Datsun that my best friend nicknamed “Corky”.
  10. My family goes to the Renaissance Festival every year and I have a full set of garb.
  11. Xunae was created from my WoW character and she’s my alter-ego (and the better, badass version of me!).

My questions from Carly:

  1. Where do you live? Maryland, USA (about 40 miles from Washington, DC)
  2. 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.
  3. What do you like to do in your free time? Read (I *love* my OwlCrate subscription box!!), game (I play Diablo 3), watch movies…
  4. 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.
  5. What is your guiltiest pleasure? cheesy rom coms
  6. Describe yourself in three words. brave, strong, creative
  7. What single quality do you most appreciate in people? honesty
  8. Say something nice about yourself… When I love someone, I love them completely and I will protect them with my life.
  9. Why did you start blogging? to connect with people, to share information, to have an outlet
  10. Something that makes you laugh? my kids, my cats, witty humor
  11. 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:

  1. Kara from Polishing Dookie
  2. Laura from RibbonRX
  3. Pamela from Living in a Limited World
  4. Wendy from Picnic With Ants
  5. Laura from Bipolar for Life
  6. Brittany from Shits & Giggles
  7. Kate from Kate is Rising
  8. Lisa from Life of an El Paso Woman
  9. Sheldon 
  10. Kayla from Intrestinal Fortitude
  11. Migraines From Hell 

My questions for my nominees:

  1. If you opened your eyes tomorrow in a whole new existence, what is the first thing you would do?
  2. What would you eat if you could only have one thing for an entire year?
  3. What’s your zodiac sign? Do you think it suits you?
  4. What is your perfect day?
  5. Who is your favorite author?
  6. Where would you like to visit?
  7. What is your favorite quote?
  8. What is your middle name?
  9. Savory or sweet?
  10. What is your favorite animal?
  11. 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