just me ranting and maybe having a pity party

I’m not sure who I’m really speaking to, but maybe it doesn’t matter – maybe I just need to vent. Or complain. Whatever. Maybe this is my way of therapy. I’m tired – 2.5 years of mystery symptoms that seem to rotate and include multiple systems. But mainly, it’s generally neurological. And as of late, probably psychological too. My husband and I have figured out that something is affecting the autonomous nervous system. We just don’t know how/why/what. My body keeps betraying me and I don’t even know why.

I want to laugh when a doctor/medical paperwork asks if I’m depressed – seriously? Do I have anxiety? Well, I’m disabled (in a way) and I basically live in a recliner since I have to sleep reclined. And I spend my day mostly in the recliner since the mystery symptoms could have my legs just give out on me for whatever effing reason. Oh, AND I’m fatigue because my iron levels are always on the low end of the scale. YES – I am depressed sometimes. YES – I deal with anxiety. I never known when the weirdness will happen and having an episode (as I now call it) happen in public only makes it worse.

They run tests and don’t want to go zebra hunting, so they want to slap a label on it without digging around to find out WHAT IT IS/WHY IT’S HAPPENING. My husband recently found some medical studies and articles about dysautonomia – the kicker? It’s as vague a diagnosis as you think it is. And it doesn’t have a clear cause. AND it’s diagnosed by eliminating other things and looking at symptoms. AND there’s no cure. Hooray. Doctors and specialists all seem to operate in bubbles and no one wants to leave their effing lane. At this point, big deal if that’s what it is. Who’s gonna go the length and figure that out? Who’s gonna get out of their effing lane?

I have found “therapies” – cozy video games so I can be as anal compartmentalized and organize as I want. I play the same few games over and over because trying something new is legit scary. I like the known. I like to be in control of SOMETHING, you know? I’ve made games guides for my cozy games that are super detailed and extensive since projects make my brain happy. Having tasks to do that don’t drain me physically make my brain happy. And it pushes back the brain fog. And I write – I started a fanfic that ended up being 78 chapters. Then I started a sequel in which I am currently 25 chapters deep. But it helps because it makes me think/build plots/weave story lines/develop characters. And I recently found like I do, indeed, like anime. Or I like the 2 animes I recently discovered. Given the set-up of light novels and mangas, I will probably like those as well.

My husband is happy that I have things to do. My mother and sister? Nope. My mother believes I should be doing something more productive. My sister thinks I’m hiding and needs therapy. Once upon a time, I was a copywriter and proofreader, but had to stop working. I was forgetting big parts of my vocabulary – I actually still struggle to remember words I know I should know, but I keep an online thesaurus page open all the time to help me. I get that video games aren’t their thing. And I get that fiction isn’t something my mother would read. But to regard the things keeping my brain effing intact as something disdainful? WTAF? And they don’t want to keep health stuff either. But, my mother is still “happy” to bemoan who I don’t call or visit like I used to. I’M EFFING SICK. Why should it fall on the person who’s clearly struggling to maintain communication? My mother doesn’t hide at all that she purposefully won’t buy gift cards that I would use to buy games (like I’m out there buying 100’s of games anyway. I play 2-3 games on rotation).

Am I keeping up with the meds I do know I can take to help with some of the symptoms? No. Because I can’t remember. And someone nagging me to “set reminders on your phone” or “leave notes” is grating. I’ve tried that and they don’t help. I read the note and forget. I turn off the alarm and forget. I don’t how to tell my mother that I don’t visit because she causes so much stress, and for me, stress is bad. Literally. It triggers episodes just like eating something my body has suddenly decided it no longer tolerates. Or walking too much. Or any other reason that I suddenly have an attack.

And doctors can’t wrap their mind around the fact that most drugs don’t help. What does help? Nicotine. Shocking, right? I use nicotine pouches daily to stop the episodes. There’s a longer medical explanation as to why it helps, but it just boggles them anyway. I’m not lighting up – I’m sucking on flavored pouches. I want my life back. I want to be active again. I want to be normal again. I’m not completely hopeless. I’m just tired. Eventually, I might get tired enough to tell the people stressing me out to fuck off.

Rant Dump Moment

I don’t want to complain and bemoan my situation – that won’t make it better. In fact, it will up the stress and kind of literally make things worse.

But…

I’m so tired of this! I’ve been dealing with these weird symptoms that are neurological, neuro-muscular, gastric, muscular, psychological, cardiovascular, and endocrinological. Woot. And….(drum roll) no one knows the why/when/how/what – double woot!

I call them “episodes” – the symptoms didn’t start out severe, but it’s all gotten progressively worse since May 2023.

What happens? It varies, but I will suddenly become physically weak and fatigued (out of nowhere). My speech becomes super sluggish and sometimes I can even form words. Sometimes my heart rate and breathing increase. Often, these symptoms are all precursors to muscle spasms that often start around my abdomen and quickly move upward…my chest, neck, and sometimes jaw all lock up and I can’t breathe.

I’ve never passed out, but my husband has always been here to press on my chest and force the spasm to stop enough for me to breathe (then everything locks up again). Heat used to help, but now it only stops with drugs.

I was referred to a neurologist who specialized in weird cases/autoimmune/ neuromuscular problems. She ordered 75 labs, 6 MRIs, a neuro- psych eval, and 2 EEGs (1 lasted 3 days)….and nothing! My brain and spine were normal, and EEGs showed no seizures.

The only clue was from my GI specialist who diagnosed small bowel Crohn’s. Apparently if the inflammation is severe enough, it can cause neurological symptoms. The hard-to-see neurologist who was supposed to be super thorough was done – she didn’t order nerve scans or dig any deeper. She was done being thorough.

I started Crohn’s infusions and the episodes actually stopped. Big YAY. Then my GI ordered a CT with barium contrast…I made it halfway through the barium solution when spasms started. Bad this time. I was rushed to the ER and given Valium (what makes the spasms stop).

That was 12/28…I’ve had multiple episodes every day since. EVERY.DAY. I have a new medication to help the spasms, but it doesn’t help my nerves which stay tense all the time. My next infusion is in 3 days and I hope that helps again.

My husband is kinda done spending money on tests and doctors. Me too. But it’s also frustrating not knowing what is happening to me…not knowing what triggers these things, and how I can help. We’re just trying to deal.

Plus, I’ve gained weight – extra annoying because I worked so hard to lose weight AND had a tummy tuck last year to remove all the extra skin.

That’s it, I think. For now.

does a body good

It’s amazing what you learn when you’re not expecting it.

Apparently, writing is good for you. And not in a “creativity helps my soul” kind of thing, but it’s actually beneficial to the brain and body.

Presently, my professional writing consists primarily (almost entirely) of creating marketing copy. And more specifically, social media marketing copy. My clients (through my employer) range from carpet cleaners to home repair to real estate to business coaching to solar panel installation. It’s interesting (sometimes) and I learn a lot about things I didn’t previously know through research.

Skip to today: I am writing for one of the business coaches and the topic is gratefulness and journaling. Apparently, gratefulness is also good for the brain and body. Really good.

But journaling – even as a writer, the idea of journaling never appealed to me. I remember having a diary/journal as a young girl, but I grew out of that. I worked at a Christian bookstore a few years ago when journaling bibles became all the rage – it never grabbed my attention.

However, according to my researching, expressive writing is shown to improve the body’s immune system. For real! It also reduces stress and improves memory functions. Amazing, right?

I realized two things: (1) I never cared about journaling because I had poetry through which I expressed myself. And I had my blog. Sometimes I discuss really personal things, but not too often; but the very act of writing help me work things out. (2) I haven’t written expressively in a LONG time. I have done spurts here and there, but not consistent. My life changed when I married a few years ago and inherited a live-in MIL, so a lot of things were pushed to the background.

Sadly but truthfully, these days, I would rather spend my free time playing Stardew Valley. It’s terrible, right? In my defense – it’s still kind of like writing my own story without actually writing.

But I do miss the writing, and apparently, so does my body. I need to get back here. I miss the spontaneity that came with a poem when it dropped into my head. (Sigh) I need to work on this. AND be more grateful.

The bottom line: Be grateful and help your brain. Write and help your body.

Hello Sand

Ever feel like you need to draw a line in the sand? Even if no one else is demanding it or even cares – you have to do it for you?

So, this is my line…the blog and the internet is my sand.

I’m a Christian. I love God. I believe that Jesus is the Son of God. I believe the Bible and I choose righteousness over everything else.

I’ve been a Christian my whole life, just not overly vocal about it. I didn’t deny my faith, but I also didn’t proclaim it all that much. I didn’t want to “preach at” people. I didn’t want to upset people. I was way too worried about what people thought. I was actually scared of negative reactions. I could blame it on being an introvert, but really – I was a coward.

I have always loved God, but I was also way too willing to compromise to fit in. It makes me sad to think of all the hurt I went through because I wanted people to accept me who really weren’t worth it. And I denied the one person who loved me more than anything – Jesus.

I’m not going to preach at you every day. I’m not going to judge you or criticize your life. But I also don’t care anymore what you think of me. Jesus is more precious to me than your opinion.

I’m not trying to live for God anymore…I’m just doing it. Do/do not – there is no try.

That’s all. Have a great day.

woe is me-ish

I’m waiting for my client to get back with me about whether the house I’m supposed to describe is a duplex or not – so I’m typing here in the meantime.

I haven’t posted any prose in a while – not because I don’t have thoughts or anything I want to say. And not because I’m clogging up my Facebook page with those words. I finally decided to try out Instagram a few years ago and I mostly post pictures of my cat Blu. I don’t know when or if I will ever dip my toes into Twitter or TikTok. I don’t think it’s an age thing (I’m almost 43)…maybe it’s a writer nerd/grammar Nazi thing?

I barely remember to post here anymore. It’s terrible. I’m a writer who barely writes. I was introduced to Stardew Valley last year by my now husband and I am hooked. We have started 4 different co-op games and played hard until we completed all there was to complete in less than 3 years (game time). He gets bored in games with no immediate tasks, so we would take a break and then start another game.

Now I’m doing a solo game and it’s taking up a lot of my time. And life is also taking up a lot of time. I feel like a brat complaining about not having any alone time anymore because most people/couples my age haven’t had much alone time for at least a decade or more (yay kids). I don’t have kids, but I do have two dogs and my elderly mother-in-law who lives with us and requires a fair amount of attention.

So, writing has suffered. I got lazy. I have an MFA in creative writing and the extent of my creativity anymore is how to describe stone counters with the right balance of adjectives and “feeling”.

I still write poetry sometimes though. I still find myself in awe of lovely writing. And I still imagine how the worlds of character continue after I step away from the book or movie. So I’m not totally jaded.

And back to my farm – I have multiple spreadsheets set up to chart my progress with the different quests/tasks/etc. It’s a little ridiculous. I still haven’t chosen a spouse, but I have to do that to get the kids. Boo.

#resolvethis

I’ve never been much for “new year’s resolutions” – I think I tried to make them at one point, but never stuck to it beyond making the list.

Having worked and studied as a writer, I have a new affinity and appreciation for words than I did 20 years ago. The idea of “resolution” carries a different distinction nowadays. Given that it’s the first day of a new year, it’s understandable that I would be thinking about resolutions.

What’s the big deal with resolutions anyway? I know it’s a thing and all, but do we really understand it? Do we even understand the word?

“Resolution” is a noun; The verb form would be “resolve.” Synonyms for resolution include: decision, settlement, verdict, conclusion, proposal.

These are not “light” words; they are not meant to be used as fluff or filler. Think about it – decision, settlement, verdict: what do you think of when you hear these words? Courts and judgments and finality spring to mind, right?

What have we done to the idea of new year’s resolutions to make it more of a joke than a life-changing move?

So, here we are, at the beginning of another year – 364 more days to change. Maybe this will be the year that we resolve, we propose, we conclude, we decide to __________________________.

Amazing Quotes

These are some of my favorite quotes – a few that stay with me every time I sit down to write, to think about writing, or even just to think. Or even when I am going about my day and thinking about my book. These are words that have made me gasp in delight – so excited at their truth that I want to call everyone in my phone and read it to them.

(1) David Jacobsen

“I believe that every time I put a word down with the intention of making something to last, whether a story or novel or essay, I am inside a moment in which I better be attempting to wrestle with a matter of life and death.”

“I believe even the sheer act of writing is a matter of life and death, that if I am not here in my place and writing, that I am not seeking with the means I have been given – an ability with the written word – to find meaning that will matter.”

“…where I am sitting when I write is the sacred beginning of any attempt to make concrete via words those matters of life and death the worlds inside my own books seek to explore.”

“…I want to remember why I am here, and why this whole writing thing deserves my deepest attention, and my innermost focus.”

“Words and what they can do are important, because in the beginning was the Word.”

#weareallhypos

There is no end to the hypocrisy of the human heart.

That’s all for now.

(Mic drop?)

#itsallcomingbacktomenow

Remember way back when,

when it was easy to write and create 

and let stuff flow. 

And then, 

I got distracted by living outside 

of words. 

I left my comfort zone for 

flesh 

and 

blood. 

Also, I found love. 

Still got it – 

kind of a record. 

Who knew brown eyes and lots of Cribbage 

could make me forget about 

my other love? 

I found someone who 

got my brain. 

And He he listened about “thou” – 

big deal. 

But I’m inching back 

to words, 

to my pen, 

to the thing I loved 

before I loved 

those big brown eyes. 

 

Exam Room 24

It’s been a while, but I’m still here. For your reading pleasure – my try at flash fiction:

 

Exam Room 24

“I don’t like how men smell. Or really, I don’t how it smells. And how I smell after.”
The nurse looked up from her clipboard, but didn’t say anything. The young woman in the hospital gown continued speaking, either forgetting that she wasn’t alone or not caring.
“They’re always so shocked when I say anything – like they don’t think they smell bad. Like they think it would smell good. And it doesn’t go away quick either. Not even after a shower.”
“What is your name?”
The young woman didn’t make eye contact. “Emily.”
“And your last name?”
“Bronte.”
The nurse sighed quietly. “I’m going to need your real name.”
The young woman frowned. “They said it was okay to use fake names though.”
“That was the counseling hotline. This is different…we’ll need your actual name.”
“Can’t I just be her for a little bit? Just a little?”
The nurse stretched a smile on her face. “Sure, Emily – for a little bit. But eventually….”
“Yeah, I know.”
“Do you want to talk about it?”
“You mean did he force me? Don’t they all in some way though? Force it? The others were nicer about it, made it seem like I wanted to…made it seem like my idea sometimes. And most times, I probably mostly did want to. But it was always their idea before mine. And I always knew that, but I went along anyway. I’d pretend that I was all for it, and they’d pretend to call again.”
“But this time?”
Emily glanced down at her fingers. “I broke a nail, I think. Doesn’t matter, I guess, since the paint’s chipped on all of them.”
“Emily?”
“Yeah, this time he was just more upfront about it. I said no. Or, I think I did. I wanted to. I tried to pull away. He hurt, in general, you know? It was rough and he didn’t care.”
The nurse stopped writing. “I’m sorry, Emily. I’m sorry for him. For all of them, but definitely for him.”
Emily shrugged. “I guess I’ll have to talk about it again, huh?”
“A detective’s waiting to take your statement.”
“About time to stop being Emily.”
The nurse smiled gently. “Maybe after the examination. That okay?”
“Sure. That way someone else is being poked and scraped.”
“I’ll be gentle. Promise. Now, lie back please and we’ll get this done as quickly as possible.”
Emily’s chestnut hair fell over the back of the examination table. “I hate how they smell.”

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