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!
I was a Psych major in college. Have I told you that before? Doesn’t matter…anyway, I actually switched majors from Pharmacology to Psych because I wanted to understand the human mind. All I learned is I’d make a terrible counselor. And birth order.
My point is I chose to study psychology because I knew what it felt like to be so depressed you just wanted to die. And I understood what it felt like to have a full blown panic attack in the ER. As in an ABG (arterial blood gas) being drawn mid panic attack and showing that my O2 and CO2 levels were reversed.
I went through some serious depression and (now I know it was) PTSD after a major medical crisis in 2001. I lost a child and almost died from sepsis. The I went home and slept with the lights on for 6 months and had nightmares for close to 2 years.
But none of this is talked about much. I don’t say I still have nightmares. I don’t talk about how close to suicidal I am if they suddenly cut off my meds. I don’t talk about loneliness or abandonment issues. I don’t say anything about the reason I have so many tattoos on my forearms.
Everyone I know feels a little broken sometimes. How many people do you know that feel self-doubt? Or fear or not being good enough? Have you ever cried yourself to sleep? Is anyone else telling you it would be okay if you did?
One of my favorite people shows it better than I can….check out Swoop. ❤
There are a lot of things we don’t say. But you’re not alone. And it’s okay if you’re not okay right now.
April was nuts. I’m still trying to remember all the things and the stuff and the sharing…
Rehearsals, a concert, prom, tech week….
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.
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.
Watching how many parents and teachers step up and volunteer to support the show is inspiring. They’re working HARD.
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.
Finally Friday, April 27 was opening night!
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.
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
❤ ~ Xun
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