I was sorta, half-way, mostly in my head, working on an end-of-the-year review but the insanity of the last couple of weeks (both in the world and just in my little corner of it) has pushed me into my stoic, quiet, updateless place.
2018 was the first year since I have been diagnosed with an inoperable brain tumor that I was stable enough that I actually did not spend any time in giant, noisy medical machines. No MRSA, no trips down the stairs, no major choking incidents. I’m not convinced I’m seizure free, and I forget things like it’s my job, but I am stable enough that I was able to convince my neuro to let me ask pain management about shots in my neck again.
2019 starts with me mostly stable brain-wise, in the middle of a couple of trips to the dentist, somewhat overwhelmed by life right now, and contemplating going to the Women’s March in DC on the 19th. So I am doing what I do and retreating into my head and my writing. I present my latest efforts from my journals…
The Night After Christmas
‘Twas the night after Christmas
and all through the house
not a critter was stirring
Not even Daisy with a new mouse.
The stockings were rehung
by the fireplace with care
Empty now of the treats and goodies
St Nick had shared.
The kids were all snuggled in
tight in their beds
with visions of such a wonderful day
bouncing through their heads.
And Dad in his pajama pants
and I wearing a messing bun like a cap
were heading upstairs
dreaming of a nice, long Winter’s nap.
When all of a sudden I heard
a bang! and such clatter
I tumbled out of bed
to go see what was the matter.
I hurried down the stairs
as I followed the noise
When what to my surprised eyes did I find
but a battle of toys!
Wow Daisy! Oh Phoebe!
And Honey-Girl too?!
There’s boxes and bows everywhere.
What did you do?!
As I stood and surveyed
the mess in my living room
I took a deep breath and wondered
“should I go get the broom?”
Just then a wondrous sight
caught the corner of my eye
I looked across the room, through the back window
and gazed at the Northeast night sky.
The snow had just started
to float down from the clouds
Clean, fresh, white sparkling snowflakes were floating down
coating our little town without a sound.
Soundlessly I turned
and gazed upon the messy room
Among those boxes and bows
I saw the joy that disappears all too soon.
Our family had been gifted
with such a wonderful day
and so our kitties had taken
their chance to play!
All those boxes and bows
and scattered tissue paper
would be remnants of cherished memories
to call upon later.
Seeing my furry little predators
attack all the boxes and bows
just added to my joyous memories
as they peeked out from the piles
with their tiny nose!
With a flick of a tail
as they dashed out of sight
I chuckled to myself and whispered
“Merry Christmas, girls! I love you. Good night!”
~ Xun, 2019
I hope you had joy in this last holiday season and I send hope and light and love for health and happiness in the New Year!
❤ ~ X
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.
Happy Mother’s Day to you Spoonies in America that have spawn.
Happy second Sunday in May to those that aren’t in America, don’t have spawn, or are choosing to ignore the muss and fuss today. And gentle hugs. And if someone hasn’t told you that you’re awesome and they’re grateful you’re here, I am. You’re awesome. And I’m grateful you’re on this rock swirling through space with me.
Happy Spring Sunday in May to my sisters, spoonies, fellow strong chicks, and amazing people that need (or don’t need) a day to celebrate or just a reason to remind you that you’re awesome, loved, and appreciated!
Am I being too cheerful or cheesy? I probably am, but I’m also aware that it’s easy to get lost in the everyday and it’s nice to be reminded that you matter. Call it “Xunnie’s learning that she’s lost too many people not to say the good stuff when you can”. Or just “be good to one another” if the first one is too many words.
Also, quick side note, especially if you’re a girl: I just watched “Embrace” on NetFlix. I had donated and supported Taryn’s Body Image Movement way back when it was a picture that went viral and inspired a kickstarter and after finally having the chance to see the result of her hard work, I am honored and grateful to have watched that with my youngest daughter and shared the message.
So, love your body. Even if it’s pissing you off today or it refuses to cooperate. It’s the only one you’ve got. At least right now. And go add Embrace to your Netflix queue.
Xunnie, right before bed a few weeks ago. This is me, no hair done up, no make up, no filters, and no muss or fuss. I spend a lot of time pissed off at this ridiculous body because I can’t run or dance anymore. Because it hurts. Because I don’t have as much control as I’d like anymore.
But in this picture I was actually feeling pretty good that day. I had gone for a walk and it felt good to get out and walk around and look at some trees in the Spring. It was a beautiful day out in my corner of the mid-Atlantic US middle of nowhere, so I went for a walk, and I was feeling pretty good that day.
So happy Mother’s Day, happy middle of May, and gentle hugs.
Oh! I know I have been shit on posting updates. Partly because there’s not always much to share, partly because last month was a little crazy busy for us. But it’s almost time for my yearly scans so I will have updates soon. I have been having some symptoms that could mean my tumor is progressing or growing and I have been putting off going in to get an EDS diagnosis confirmed. But my lungs are slowing healing and I’m not coughing as much anymore, so I’ll take that for good news right now!
Updates soon. I promise!
There are a lot of things that come with having a chronic illness. We talk about the eventual solitude because family gets tired of dealing with doctor visits or tests, and friends fall away because you can only cancel or reschedule time with them so many times before they give up, and before you know it…..it’s just kinda you and a good book or your favorite show.
Another side effect is getting smarter about your illness and/or medication(s). It may be to learn how to survive with your body doing its best to turn on you. Or it may be out of self defense because the doctors aren’t paying enough attention, and somebody has to advocate for you. So without much other support, you learn everything you can about your disorder or disease so you can defend yourself against a doctor that has you and 3 other patients in the next 15 minutes.
Those are just some of the life side effects, then there’s the medication side effects.
Right now I’m struggling with having gained about 15-20 pounds because of one of my meds. I’m not necessarily over weight, but I am heavier than I have been since before I had my hip replacement.
After having been diagnosed with Congenital Hip Dysplasia at 29, I worked my ass off (literally!) to get down to my lowest possible weight for my height and body type in an effort to push hip surgery off as long as possible. I ended up losing 50 pounds total. At the beginning of that journey I was overweight, so I did what I always do and dove into research and figured out what was the lowest weight that was still within a healthy BMI and I changed my diet, exercised every day (I could eventually speed-walk 4 miles in 45 minutes!) and reached my goal weight.
Once I reached my goal weight, I have bounced up or down a few pounds like most people do, but I pretty much stayed at the same size. And now I’m closer to the size I was before I was diagnosed with Hashimoto’s.
I’m not making much sense, am I? Basically I’m just saying I’m struggling with having gained enough weight to go up a dress size in the last few months. And this is one of those side effects from our meds that we may not necessarily say too much about because we’re avoiding more discussions of our illnesses and hoping no one says anything about the size of our asses. Or I am anyway.
The fight in my head is 20 pounds versus lower pain levels, better control of my hands, and fewer migraines. So I guess I’m learning how to live with a few more pounds.
I saw a lot of support for International Women’s Day yesterday, but there was also some really ugly closed minded responses (here’s to the “real women” that didn’t “strike” today). Did you know that *every* March 8th is Women’s Day? And November 19th is Men’s Day? And yes, this year Women’s Day held some extra weight. Because of the events of the past….6 months? (give or take) women are marching, speaking out, striking, 10 Actions in 100 Days.
I personally lean pro-life, but I’m standing up to make sure Roe V Wade isn’t overturned. I personally lean more hetero feminine female, but I’m standing up for people to have the right to be who they are. I personally am married to a man in a traditional marriage, but I’m standing up to make sure Same Sex Marriage is not overturned in any of the 50 states that it’s now legal in.
I have a mother, and a grandmother, and 2 daughters. I stand up for them. For me. For women that can’t. For my friends, and family, and all of the women in my life that I love. And for all the women before me, after me, and the women that inspire me. It doesn’t cost you anything to be compassionate and supportive, but it means everything to the peoples that need it now, and in our future generations.
Chronic illness doesn’t take a day off, chronic pain doesn’t take a day off, life doesn’t take a day off, but I did post a strike notice yesterday on my blog. No, I didn’t march on Washington or lay on my couch and check out for the day. But I spoke out and I supported the women that were doing the marching and the protesting. Because I have daughters. Because I know what it’s like to be a woman in this county, in this time period, in this world.
Why did we speak out on International Women’s Day this year especially?
Because being a woman means….
1. Carrying your keys between your fingers as a “weapon” when walking alone at night.
2. Turning your headphones off (or way, way down) to make sure you’re not being followed.
3. Mastering the “I’m walking quickly but not so quick you’ll know I’m afraid” when someone is behind you.
4. Calling friends when alone in a taxi/Uber/Lyft/walking from the Metro to your car in order to feel safe.
5. Texting your bestie/boyfriend/parents/brother your driver’s details “just in case”.
6. Messaging them when you get home to let them know you’re okay.
7. Sitting near other women on public transport to minimise the risk of being harassed.
8. Pretending to be on the phone in any number of situations to avoid harassment.
9. Giving men fake names/numbers rather than risking them lashing out at being told “no, thank you”.
10. Staying silent when being verbally harassed out of fear if you say something it’ll turn violent.
11. Keeping your drink covered with your hand/ getting your friend to watch it if you need to go to the bathroom/having to throw it out & get a new one if it was unattended at a bar so you don’t risk getting drugged.
12. Making sure someone always knows where you are if you’re going on a first date with a stranger.
13. Toning down statements with words like “just” and “sorry” to avoid being perceived as pushy or aggressive or bitchy.
14. Faking being happy even when you don’t feel like it to avoid being seen as a bitch.
15. Not being TOO perky so that people don’t think you’re stupid.
16. Pretending to be patient when you’re interrupted/talked over repeatedly by men.
17. Spending money each month on period products, which are still considered a “luxury” by men/governments.
18. Hiding said products up sleeves/in pockets when going to the bathroom in public places, because there’s still a stigma around periods.
19. Wearing makeup because you’re conditioned to believe your bare face isn’t good enough
or heck, just because you like it – and being told you’re fake/called false advertising.
20. Or not wearing makeup because you don’t want to & being told you look tired/sick/”you’d be so pretty with just a little make-up”.
21. Debating whether the tweet or Facebook status you’re about to post will result in being harassed,& having to make the decision about whether it’s worth it.
22. Answering/deflecting personal questions about your relationship status/fertility/home life from friends/coworkers, potential bosses, current bosses, or random strangers.
23. Dealing with birth control/side effects if you have sex with men & want to avoid getting pregnant because there’s still no male equivalent available.
24. Fighting with the knowledge that the government (dominated by men) has the power to legislate against your body, and standing up to make sure they don’t.
25. And, finally; dealing with people telling you your concerns aren’t valid, you should stop complaining because “women are equal”. (Also known as the “what rights DON’T women have?!” argument.)
I’ve been pretty quiet lately. Mostly because I feel like I’m up to my eyeballs in trying to understand and survive the new version of Sims~The Insane America version. And, based on the blogs I have seen, and the spreading silence of the others, I’m guessing a lot of people are doing the same thing.
But, I saw my neurologist today, so I figured I’d post an update (and I can share the song I have had in my head for weeks now!)
So….oh, back up. Actually I have a funny story and it sort of relates to my new reality of “Is this brain tumor or not?”.
Last night I was making dinner and …..well, I had to stop for a few minutes and ended up calling hubs (who I knew was already on his way home from work) and …
ring……ring “Hey baby, what’s up?”
“Oh hey. Um, how far out are you?”
“I just pulled into the neighborhood, why?”
“Oh……I may or may not need a stitch or two…”
….”See you in a minute.”
I was slicing mushrooms and the chefs knife decided I was a mushroom too.
Fortunately it wasn’t big or too deep, so we actually went over to urgent care. They said yes, I needed to come get checked out, but instead of 1-2 stitches, the doc elected to do surgical glue.
So I am being a little bit whiny today because I tried to chop the end of my finger off. And ow. And 1/10 do not recommend.
So, forward to today. I had a follow-up with neuro after my swallow test last month.
Mild Dysphasia. Because of brain tumor or not? Hard to say for sure, probably yes, but stable for now. So I tell Dr Neuro I’m having more memory issues. It’s worse if I’m forgetting something and I start to get flustered or if I’m already upset. But it’s a thing, and I’m starting to write things down and back myself up with support people or apps/phone/tablet/etc. So she asks me “What don’t you remember?”
Ummmmm, I don’t know. I can’t remember. Anyway, she followed up with a memory (Alzheimer’s?) baseline test and a quick neuro exam. Declared me stable (ish) and gave me 4 months before I have to see her again, and bounced me back to pulmonology because I’m still coughing, my voice comes and goes, and occasionally I have a productive-ish cough. It’s gross and hanging around since MRSA last April.
So I go see pulmonary dude on the 16th and plead with him again to please just do the damn bronchoscopy. Please? The coughing thing is kind of a pain in the ass.
So, Xunnie and her brain tumor are mostly stable. A little chopped up, kinda whiny sometimes, still coughing, but…..stable.
And I have had this song in my head since the Women’s March.
(But I kinda love it!)
I happened across a news story this morning in my daily perusal of news and what’s-going-on-in-the-world that struck a nerve with me. It has nothing to do with my usual blogging. Actually, no, that’s not entirely true. I have an all metal hip replacement in my left hip, and that fact does come into play in my story. I take it back, it kinda does relate to my usual blogging of “noise from a chick with disabilities”.
ANYway, I have traveled pretty much my whole life. Between growing up as a kid that moved a lot, and then marrying a guy in the Navy, it’s been pretty much a guarantee that my friends and family would be in a different part of the US than I was. Typically it’s fine. I’m not afraid of airplanes or road trips.
This particular story relates to an article posted on CNN three days ago. Angela Rye was “selected for additional screening” and shared her experience. I read through her article and I got it. I mean I really related to it because I’m a woman, and we don’t appreciate being physically accosted for security theater, and because I have an artificial hip (which makes traveling fun). All metal, my entire left hip. It sets off metal detectors.
I know that it will most likely set off their metal detectors. I tell them I have a hip replacement. I have all the paperwork to show I’m just a chick with an implant. I tell them to stick me in the scanner and they’ll see it. I explain everything, and although I have been subjected to “additional screening” for longer than most people, I have complied because I knew it was easier for them to stick me in the scanners that let them see everything than it was to fight with them.
The first time I traveled after my hip surgery was about 7 weeks after surgery. I still had my cane then, so it was pretty easy to see I was just a chick traveling and not a threat. *But* the last trip I went on a few years ago to fly out to my mom’s in California -that trip- taught me a thing or three about what a hurtful experience feels like all in the name of security theater.
I checked in and made my way through the security check points. I had a carry-on and my youngest daughter with me and we were on our way home after a week or so in California. I told the TSA agent I had a metal hip before I stepped through the metal detector. It dinged, unsurprisingly. I explained that it they let me step into the scanner that was right there two steps away, he would see my hip and I could go about my merry way.
“Nope, you set off the metal detector. You need to be checked.”
SERIOUSLY??!! Have you seen any thirty-something, small, white, redheaded moms terrorizing anyone lately?!
Not only did they subject me to a full, humiliating pat down, no that wasn’t enough. They:
Made me strip down to my tank top and jeans, telling me to take my hoodie off in front of Gawd and everybody.
Insisted on keeping my daughter 10 feet away from me
Wouldn’t let me touch any of my own stuff or my kid
Searched my carry-on and my daughter’s backpack
and finally, ran her fingers through my hair, under the waistband of my jeans, up my thighs, over my chest, butt, stomach…you name it.
The entire thing was embarrassing and humiliating. But worst of all, on top of them taking all my stuff away from me, was my kid seeing them search me like I had done something wrong and not allowing my 10 year old daughter near me.
The final kick in the teeth? After everything was said and done, and I got my kid and my stuff back, we made our way over to the gate to sit down for a minute and wait for our flight. Not 5 minutes later a lady walked over, sat down at our same gate, and reached into her bag for something and pulled out a full bottle of water that she had opened, taken one drink out of, put back in her bag, and made it through security!
“Oh! ha…ha….I forgot I had that. Whoops.”
(The water thing wasn’t her fault and I wasn’t mad at her. It just illustrates that the TSA is a joke.)
#TSAVaginaMonologues #SecurityTheater #travelingwhiledisabled