I re-watch Grey’s Anatomy on Netflix. Over and over. It’s like comfort food for my soul and every time I watch another run through of all (now) 14 seasons, I find something else to hold onto, something else to relate to…..or occasionally, a lot like this week, something to connect to.
It’s been a tough week. Hell, I always feel like I could pick a point in time and say “it’s been a bit of a rough ____.” (And on the other side of the coin, I could simply pick a point in time and just be grateful…I know.)
The story of this week in particular starts last weekend. We chose last Saturday to make the second of our annual pilgrimages to the 16th century… AKA we try to go to our state’s Renn Fest at least twice during the season. A handful of times through the years we’ve managed to go more than once or twice, but two trips is our goal. There are nine weekends in the “Faire Season”, and we always go on opening weekend because it typically falls on or very close to my oldest daughter’s birthday, so somehow in the last dozen years or so we have created a family tradition of going to opening weekend at RennFest as part of K’s birthday. Our second trip is usually near the first weekend in October.
So we decided to go last weekend, and even though I love going, I also know I *will* physically pay for it in the following days. It’s a lot…a lot of people, and socializing, and walking, and being dressed up in full garb (dressing clue: boots then corset!!). It’s just a lot, so at the very least I am going to be extremely tired and sore (I once bruised my ribs from my corset). I have, in previous years, ended up in the ER at 2 am from a migraine, and the accompanying dehydration and exhaustion. I made the mistake of going too soon after radiation treatment and again ended up in the ER because my potassium levels were stupid low.
Anyway, the point I’m getting to is that we decided to go last Saturday, so Sunday I was (predictably) very tired and sore, but certainly in much better shape than previous years.
Until I woke up on Wednesday knowing the coming storm of a menstrual migraine was on its way. I have …typically 2-4 days… a month that a migraine can take me down, or if I can’t fight it back hard enough and it gets too far out in front of me, it’s off to the ER. But I haven’t had to resort to an ER visit in well over a year.
I spent Wednesday fighting, pushing meds and fluids. Lots of meds. Beating down the pain, refusing the nausea. I spent the afternoon laying on the couch with my favorite blanket, and finally ended up taking a higher dose of my pain meds and migraine meds and wandered up to bed early. Pulled the covers over my head and just tried to sleep so I could get away from the pain and nausea.
I woke up Thursday feeling a little better. I still wasn’t up to functional, but I was upright, eating, back on a mostly regular schedule of my meds, back off Imitrex, and doing 75%ish in life.
Except as I was settling into bed Thursday night, my *dh finally realizes I have been dealing with a lot for the prior 48 hours. After 2 days of me fighting from my soul to keep me out of the hospital, he decides to actually LOOK AT me and saw the cost of 2 days. I was really pale, my random black eye on my left eye swung in for a visit. Basically I look like I have been fighting….something.
I just looked at him…..
2 days. Two DAYS. 48+hours TWO FLUFFING DAYS……
I feel like a ghost in my house. I have so much more to say…..so much….
but I’m disappearing…..
*dh= “darling” husband. Read it in whatever tone you feel would fit described sitch.
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…
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!
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…
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…
I got to take my daughters and see her April 17th in DC…
It was amazing and she’s incredible! She opened the show hanging from the chandelier!!
I tried to remember the songs she did…
Get the Party Started
Just Like a Pill
Revenge (which included a giant inflatable Eminem)
Just a Girl (No Doubt cover)/Funhouse
Teen Spirit (Nirvana cover)
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
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!
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.
That was immediately followed by the National Marches…
…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.
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.
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.
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
I always said the one thing I got out of college (besides a degree and being the first woman in my family in 4 generations to go to college) was a birth order theory. I was a Psych major, which if you know me is kind of ridiculous because psychology is waaayyy too subjective for me.
I have discovered I am a really, really objective kind of girl. I like things to be true, and proveable, and empirical.
But somehow I failed algebra twice, I have a psych degree, I’m a writer, and I believe psychology is good for understanding birth order theory. And I have emerging observations about the generations in addition to birth order.
I’m Gen X. Born in the first half of the 70’s so I’m pretty sure that puts me squarely in Generation X. My parents being 20+ years older than me puts them in the Baby Boomer Generation. I had kids young and then, for several reasons I have touched on in previous blogs, I have a 10 year age gap between my oldest and youngest child, which was just enough to put them in millenials (kid 1 and 2) and almost Gen Z (youngest).
I am also an only child. Something that seems to be less common in my generation. But then I went on to have 3 children of my own. So when I started studying birth order in my second year of college, I found it really interesting. And, observing my own behaviors, my husband’s (he’s an oldest), and my three kids; I found a part of the abstract, subjective major I had chosen that made more sense to me. I always say in the unlikely event I ever go back to studying Psych I would focus on birth order.
One of the most interesting things to add, for me, is also throwing in the generational changes.
(I haven’t been blogging a lot, so I thought I’d share some of the noise in my head since health-wise I am mostly stable right now. Post MRSA, stable brain tumor, managed pain, waiting til June for more all-metal hip implant related tests. But I’m a writer, and it’s always noisy in here, even if most of it just ends up in my journals. So the birth order thing is a subject I find interesting. And this is today’s noise in my head.)
And the world is crazy enough right now so I’ll skip the commentary.
I am a born in the 70’s Gen X’er, very (very!!) much an only child. It’s not a bad gig, but I always knew I wanted more than one child of my own because there’s a lot of social skills you don’t necessarily learn as an only. Throw in that we moved A LOT when I was a kid (5 elementary schools, 2 middle schools, and 3 high schools), and you have me. Red-headed rebel child, introvert, music lover, dancer, writer, weirdo.
My husband is an oldest. He has 2 younger brothers in an age spacing kind of close to our kids. I had my oldest kid early in adulthood, which is a blessing because I started showing symptoms in my 20’s, so if I had waited to have kids until my late 20’s or early 30’s I might not have more than one….or maybe any. I have 3 kids, but I have been pregnant 5 times.
Anyway, back to the story. My oldest is squarely in the millenials. My oldest two actually. Born in the first half of the 90’s (92 & 94), they are all millennial. My youngest wasn’t born until December 2002, so she’s more of a gen Z. It’s interesting to see not only the differences in who they are as oldest, middle, and youngest; but different in generations.
Did you know it’s not uncommon for onlys to marry oldests? The oldest is usually more independent and responsible. The middles are often peace-makers or entertainers. Youngests are more easy going and happier. Onlys have traits of both oldests and youngests. (I mean, it makes sense right?)
I am an only, and an introvert, and happy to spend plenty of time by myself. But my youngest is known to follow whoever’s home around the house and just like to be nearby. My oldest is responsible and (too)hard on herself sometimes. My middle has always tried to make us laugh and he’s an entertainer.
What do you think? Are you an only? Or a youngest? Do you see bits of yourself in some of these traits?
Side note: Friends of mine lost their daughter to brain cancer this last week. Please consider donating to Stand Up 2 Cancer or The American Brain Tumor Association. Both causes close to my heart . Or even just share my post or the pages for either organization.
Prayers, positive energy, love, hope, or strength are all gratefully accepted and I will pass them on to the family.
My heart hurts so much for them right now. I don’t have the words….
❤ ~ X
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!
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…
…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.
My docs have just started watching my cobalt and chromium levels in the last 4?ish years and I have learned that there’s:
- normal cobalt and chromium levels
- high cobalt and chromium levels
- implant level cobalt and chromium levels
- 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.
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.
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….
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!
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.
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
Merry Samhain! Happy Halloween! And a good boo! to you all!
Today is my last day of my Photos From My Life series. Did you guys like anything in particular? I always think it’s interesting to see photos from someone else’s life. Where are they? What do they tend to take pictures of?
Some people take pictures of places, or things, moments, or other people so they can hide behind the lens instead of being in front of it. Some take pictures of places and people they love to remember.
As I was looking through my social media today, I counted how many of the past years I have thrown on scrubs and dressed up on Halloween as my alter ego: Meredith Grey. Since I created my personal Facebook page in 2008, I have dressed in scrubs 6 out of the last 9 years, with 2 other years as Alice (one was Evil Alice, inspired by Warehouse 13), and one year I was Sarah Sanderson. (and if you don’t know who that is, get your booootay over to Amazon and order Hocus Pocus stat!!)
This year I am dressing up as an Arkham inspired Steampunk Harley Quinn. (I’ll post pix tomorrow! The girl child is doing my make up!)
So, onward to the final Black & White Photo for my series!
Merry Samhain! ❤ ~ Xun