Search Results for: "pain"

The Last Puzzle Piece To This Long-ass Health Journey, Finally

Hey peeps. Good news that may not sound so good atm, but I promise, it’s good news. We’ve finally found the issue, and I’m pretty sure once it’s corrected, shit will be as it should be again. Short and sweet: it’s magnesium deficiency. It’s been going on for a while — at least since spring, possibly since December 2023 — but because of the nature of how blood is tested to find magnesium deficiency, and blood is the last place for said deficiency to reveal itself (something about leaching magnesium from the bones to correct the low magnesium), one has to be at the worst of the deficiency for it to be caught. But now we know what it is, and yeah, with proper treatment, it’s going to get better.

I had a long ass thing drafted up, going into specifics and such, but I’m just too tired to edit, or read, or even post this. But I wanted to share because it is really good news. I got some labs on the aldosterone levels too, and although on the low side of things, supplementing sodium has seemed to keep the potassium/sodium balance in a good place for the moment, which is what matters most. If the secondary adrenal insufficiency goes full primary, it’s a simple pill to treat, so I’m not that worried. And for all I know, the adrenals will improve when the magnesium increases. It takes about 6 months of treatment to restore magnesium deficiency. I don’t know how long the exhaustion is going to last through the next 6 months, but for now, given I’m only 4 days into treatment and feel so much worse than when I got the results, I’m not holding expectations of anything atm. Just getting through.

A lot of sensory feedback has returned to my system, things I didn’t notice were gone. I apparently hate food right now, or at least the taste of it makes me want to puke most hours, making all of this so much harder to repair. I’m using a three pronged approach of magnesium citrate in liquid form as a once a day supplement, magnesium chloride (aka magnesium oil) for transdermal absorption twice a day, and mineral drops added to my beverages of choice. One of those things is going to get around the absolute nausea that has reared the moment I started supplementing and my stomach could be felt for the first time in months. I can feel the cold floor through my feet now, can feel hot water again, can feel how tired I am. Sure, I’ve been slow and aware of it, have had no stamina, no motivation, hunched over like gravity is too much, but it wasn’t until getting some magnesium in that I can feel the overwhelming weight of exhaustion hanging off my every limb, pulling me down. But at the same time, sleep is near impossible. The exhaustion is so bad I’ve finally been able to convince myself not to fight it, to just nap and let the magnesium absorb, etc, but my body has no idea how to switch into sleep. I might have to start taking melatonin during the day just to help it rest as it needs.

Uh, so this looks like the last thing. Because of how essential magnesium is for the body, and that this has been going on long enough to drop my calcium levels with it, there’s a lot of systems that have been under-functioning. Aka, why everything was breaking when the mast cells were finally calmed, making no sense until framed in the context of a deficiency. If I’m lucky (not holding my breath) I may see some things automatically correct that looked like permanent issues. Who knows, maybe the pituitary will… raval? Rally? Rally, yeah, and it’ll remember how to make ACTH/TSH. Not depending on it, but why not be open to a positive potential, right? I should at least stop being chronically fatigued and so dumb brained (totally a medical term) once levels are optimal, and yeah, we’ll see who I am then and what needs prioritizing once I reach that goal.

I would show you the little pumpkin sculpt I’m working on, or a finished painting, or cute cat photos of the kittens, but I’m too tired to upload and deal with formatting. I’m skipping Halloween this year. Thought I could do it — it’s my absolute fav — but getting the magnesium raised has me feeling all the muscle cramps, exhaustion, and fuzzy brains that I can handle atm. But I wanted to check in, let you all know I’m still alive and going to be fine, and when I get back to being more myself, I’ll bore you all with the details — such as if you only drink filtered water, you’re demineralizing your main natural source of magnesium. <— Don’t do this. It adds up quick especially if you're reactive to everything but water.

Hope you all are well, and if not, hope you’re feeling defiantly alive. Peace, peeps. >^.^<

Okay, ALSO chronic fatigue

So… it’s still chronic fatigue. It just looks like it knocked out my adrenals for a few days. So, yeah. Still this bs puzzle to solve.

I wanted this to be the end. MCAS should be bad enough, yeah? Adrenal insufficiency bad enough. Hashimotos, dystonia, brain fog, ADHD executive dysfunction, blah, blah, blah. I keep coming back to the vagus nerve. It turned my adrenals back on today. Vagus nerve stimulation to both tragus of the ear for 1/2 hour. Knocked me out, and when I woke up I was shaking from adrenaline rushing through me as the adrenals did their thing, brought my blood pressure back up, turned on all the systems like a reboot to an organic computer.

I’ve been experimenting with vagus nerve stimulation for years since I was living out of my car with screaming face pain and chemical sensitivity (which turned out to be MCAS). It was the only thing that allowed me to get back in the house. I thought it was focused on the immune system because of all the allergies and MCAS. I thought the dystonia was part of the immune system problem because of how it showed up when I was knocked out by allergies. But those adrenals are connected to the vagus nerve — all organs are. The immune system, the digestive system, olfactory — the whole sensory issue thing with skin numbing, lack of temperature sensory data. It’s all connected to the vagus nerve.

I actually stopped vagus nerve stimulation some months back because I was only noticing how it made me tired and seemed to knock out things that were currently working. I found it counterproductive, especially when the MCAS was raging. Now… now I just see it pointing to the problem.

There are chronic fatigue specialists out there. A whole crew in the hospital in Boston my dad used to work at. I just don’t know if I can survive the stress of trips to Boston, never mind be able to get in with such a program. But I think I need to do something, soon. If there’s a deadline on my adrenals, where without constant stimulation they can fail permanently, I want to get this figured out before my secondary adrenal insufficiency can become primary. The MCAS raging in my system was ensuring adrenaline was flooding me. Treating the MCAS has stopped the adrenaline. It might be why my adrenals are fluctuating now without anything to remind them to wake up.

It’s all theory. I’m not a doctor or scientist, just a very exhausted patient 11 years into this mystery keeping me from living my life. But chronic fatigue isn’t just the label they slap on patients too stubborn to get better anymore. It’s an actual specialty with research and new answers. And the vagus nerve seems to be in the middle of a lot of that research.

There’s that bastard, hope, still clinging on by the fingernails, no matter how bad this goes, how depressing each dead end leads. Shouldn’t treating all those other problems be enough? Nothing feels like enough…

Another Adrenal Crisis

Hey peeps, thought I’d check in and let you know how I’m doing. Things were in a weird place for some months. I was getting treatment for the MCAS, some amazing meds that I absolutely noticed were working. And there came a point where I felt it — the MCAS switched off. It wasn’t in the background running 24-7. It was under control, quiet. And I was thinking fine, okay, it’s a forever illness, it’s going to flare off and on and that will suck, but everything else should be fine, right? But it wasn’t. I was just so damn tired all the time. The chronic fatigue had gotten worse without the constant battle happening in my body from the mast cells. It didn’t make sense.

So I asked for a higher dose of the ADHD meds, hoping that the stim would deal with the chronic fatigue. And it did, for the most part, except for the hours each day the chronic fatigue would win, sometimes entire days gone to being exhausted. My working memory was failing again, and I was thinking of putting up another executive functioning board because thinking and staying focused were getting so difficult again. Got my thyroid checked — my numbers had slipped and I was hypothyroid again, so we upped my thyroid dose. Again, expecting energy, return of that working memory, but no. Tried progesterone — my hormones were all low. Maybe it was something in there. Progesterone made me want to sleep all the damn time, even as it was clearly helping other things, like my mood.

Nothing was making sense, and I was between doctor appointments, just trying to figure out why I was getting tireder and tireder. Everything I was doing was supposed to help with energy. I was getting plenty of sleep, taking the right supplements and meds, my labs were where they’re supposed to be, so why was I still dragging? Was this just what happens after being sick 11 years and now “healthy” in an older body? I’m not that old, but supposedly hypermobility can lead to chronic fatigue just naturally, no known treatment of the moment. But I had been so much better just half a year ago…

Then I had a day that sparked a memory and set me on the right path.

Friday, after a good 9 hours of sleep, I got up and went into my little studio/office to work on the computer. The day before, I had spent the day standing at the desk, but Friday I needed to sit. I was exhausted. Everything was demanding I go back to bed, but I refused to lose an entire day, so I pushed on. And at some point, while staring at the computer, wondering why everything I was doing was so damn slow, I noticed that my eyesight was dim, and darkness was crowding the edges of my vision, as if I were moments from fainting. Checked my blood pressure — I was creeping into pre-hypertension instead of my usual normal to low, and my pulse was flying. Weird, but that could all be from the ADHD meds. Checked my blood glucose: even 80. Perfectly fine, except for a complete absence of hunger that felt odd. No MCAS symptoms, no allergies, no reason for the response. I was taking all my meds as I should, including my life saving cortisol.

Hours after that, making myself stand because it seemed to help clear the darkness from my vision a bit, I found myself moments from bursting into tears, bizarrely emotional, completely broken down and I couldn’t figure out why. My brain kept telling me that this couldn’t be normal. It didn’t matter that I was on all the right meds, that I was 11 years older, etc: something was wrong and it wasn’t aging or “chronic fatigue”. Something was seriously wrong.

Eventually, cuz my brain was wrecked by this point, I remembered the last time my vision got like that beyond random dizzy spells when standing. It was when my adrenals failed the first time, a few years into the illness, during treatment for Lyme disease. It hadn’t been a secondary, pituitary knocking out only the cortisol problem that first time. It had been a full blown failure of my adrenals, and with the loss of cortisol production, I had also lost aldosterone production. Something that wasn’t noticed until the day after I was prescribed hydrocortisone, leaving me rushing at a crawl, hugging a wall to stay on my feet, my vision dark and tunneling, to get to the pharmacy before they closed because I was losing all the liquid in my body faster than I could put it in.

It had been terrifying that first time, something in my system very much aware that I was going to die — quickly— without intervention. And that never happened again. Any other time I’ve found myself in an adrenal crisis, it was only ever low cortisol.

Aldosterone keeps the electrolytes balanced in the body, specifically sodium and potassium. Lately I’ve been craving salt, unsure why my intake was changing since I wasn’t active, wasn’t going out in the heat, etc. But after years of this yo-yo-ing, being fine than feeling near death, I wasn’t paying attention. Partially because my brain had been feeling like a sieve, unable to hold thoughts again. I couldn’t write again, my mood kept fluctuating, and I was so damn tired. Everything felt hopeless as I hit this wall that didn’t belong there. A part of me very well knew that there was a level of health I could clearly remember that I was reaching toward. It was absolutely in my grasp — I should be functioning, everything was addressed! — yet something else was wrong.

So after realizing that this was very much adrenal, even if I was getting enough cortisol, I made myself eat some potassium full fruit and doused all my water with salt, including pouring salt into my hand and eating it raw. Hunger returned enough to eat properly soon after, and I ate some wonderfully preservative-laced foods that increased my sodium swiftly. The next day, certain that I had found the problem (but also the weekend and unwilling to go to the ER if avoidable), I asked my partner to take me to get some licorice candy — the real stuff — while I wait for my online order of licorice root powder to get to me.

I got better. Felt sick first — still feel kinda sick, the next day after adding the licorice — as everything started shifting, changing. All these basic functions turned back on, my body suddenly producing saliva again, sounds and scents roaring back into the world at full blast, able to feel my skin, how dry it is, the temperature in the air, my fingers and toes. The constant lower back pain disappeared, even as I was jumping at noises, my startle reflex returned after too many months to count. That reflex felt like something knocking on my nervous system, an internal jolt of energy that demanded everything wake up, start working!

Last summer, my endo said that I had hit the one year mark of treatment, and would only need to be seen once a year for upkeep. She warned me my adrenals might fail, even though I only had secondary adrenal insufficiency, but it had seemed so unlikely. Apparently not so much.

So yeah, I’m back in the recovery stage of things as my body remembers how to do basic things all over again (again), but I suspect things should go faster this time around with everything else basically treated. *knock on wood* I should get some electrolyte drinks… There’s a proper med they might try to put me on (Fludrocortisone), but I remember the half life being too short, with long gaps of fluctuating aldosterone levels, and preferring licorice root over it in the long run. There’s also adrenal cortef, that I’m going to be considering again to supply the other hormones my body is underproducing… I was on all this stuff back when this illness was new to me. At some point the poverty and the years of screaming face pain and unchecked MCAS and untreated adrenal insufficiency just broke me and I forgot so much.

I had thought it had been a poor prescription of licorice root the first time my adrenals failed. Adrenal failure is so rare, but if you have too much licorice, you can literally knock your adrenals out, the same way if you have too much prednisone or hydrocortisone. The body becomes dependent and, once removed, it fails. It’s because licorice contains glycyrrhiza, and although how it exactly works is still in question, it seems to supplement aldosterone and cortisol in those who are either still producing or supplementing cortisol. This is why most licorice candy is flavored with anise oil: over eat it and it’s deadly. I had been prescribed licorice root back then because it was clear something was wrong with my adrenals, but because of the poor communication with my doctor at the time (who ended up out of the practice shortly after), I stopped taking it because I couldn’t afford all the supplements they were prescribing. Stopping led to an adrenal crisis… but the problem was, I hadn’t been taking enough licorice to cause it, and poor communication from a slew of temp doctors after (and a dangerously useless PCP) led to me to assume for years that I was dealing with the mythological adrenal fatigue instead of being one of the rare people who has adrenal insufficiency.

And that’s still hard to get my head around as I get older and learn all the “rare” things I have that are my normal. I went through life assuming my every talent and limit are comparable to everyone else, and then, when learning of my disability, assumed, okay, my limits are worse. They’re why I’m struggling so much and shit just seems so easy for everybody else. But even when struggling, I can do things with ease others would take years to learn, and I keep collecting all these rare illnesses, so I guess rare is a spectrum in multiple directions with this body of mine.

I’m hoping my talents can win for a bit going forward. The last 4 years have felt all about the limits, to be real. I don’t know how many times I’m supposed to get wiped out by something and still expect to get back up and walk it off. This has been a damn long journey, and I still feel like I’m waiting to be allowed to start living my life instead of dealing with all this health bullshit. I don’t even want to claim that this is the last thing and I’m going to be fine, because seriously, I have been wrong so many times now. Why would something like the adrenals and thyroid, two supposedly perfectly treated now, both divebomb the last few months? I don’t even know if having expectations and hope aren’t just a form of trauma and self ableism at this point because it all gets crushed so quickly by reality being completely unreasonable. But that could just be the low adrenals talking atm, and tomorrow — next week/a month/how ever long it takes — will be me back to my cheerful, healthy self. Guess it’s another a wait and see thing.



ep 12: Scene 4 : Splintered Leadership updated to Demon Bonded!

Gonna be real, I’ve forgotten so much of writing has to do with pacing. Like, my brain wants to focus on all the things it’s noticing it’s struggling with, aka, memory related. It wants to build a visual scene so I can pin it all down (cuz my inner screen is mostly blank), and it takes layers and layers of drafts to finally paint that picture with words. (Hoping it’s not generic or something I did before and forgot.) And it wants to remember all the things because, since the MCAS wiped out my working memory and memory retention hardcore through 2020-2022, that underlying fear gets a lot of attention. Even as I’m writing this part of the story, just getting words down, my brain is all about these visual and memory details cuz it thinks that’s what’s important.

But it’s not. That’s just window dressing. The real war happening is where I’m coming up with all these fun, exciting ideas on the fly and figuring out what to show, what to tell, what to hold back to grow interest and suspense, but hopefully not confusion. This is all the decision fatigue of writing that goes into pacing as you count all the questions you’re leaving to be answered, and try to guess how long until your reader doesn’t care if it’s answered and just leaves. And legit, I don’t know if I’ve found the flow yet.

This is a complicated set of scenes, which is why I put this story down when my brain broke. I’m introducing a bunch of characters, an entirely different area, a magic system, multiple morality systems, people with goals and intentions and interactions that have absolutely nothing to do with our main character — but all through his point of view. It’s difficult because this could be a play Ky is watching for how little it has to do with him, beyond the shrapnel of Tobias’s demons. While at the same time, he’s the very reason this play is happening, these people are meeting, decisions are being made, an organization is in crisis, etc. He set things in motion while completely detached. But I have to make it matter to/through him, otherwise… why are we here?

Everything up to this point put Ky in the center. Now he’s bringing that center into an already established world, but he’s not landing center. He’s landing off to the side like the nobody he is to the coven. It is such a change of everything, and it’s only as I’m writing it that I can see how I need to adjust, where to focus, etc. Cuz I can’t know until it hits right (or wrong and I can correct).

I know it’s going to take time to get back to that skill set, that flow and confidence in writing… But I’m impatient. I just want things to work the first time so I can tell the story best. But like everything that is mistaken for talent, it’s really just hard work and repetition, doing the thing again and again until it looks easy. It’s remembering that the things we do well aren’t necessarily easy, we’re just too interested and invested to give up when it’s difficult. It has to be a satisfying challenge, otherwise one can turn showing up into the challenge instead, which is a problem all its own…

AI Art book covers, Capitalism, Elitism and Inequality Justified through Meritocracy in Self Publishing

So the AI art fear mongering continues the war drums on the poor, and I thought it might be time to actually talk about my opinions on this as I try to collect my brain back into something that can return to writing without being a neurotic mess. So, of course, I’m going to pick the stance that pisses everybody off, cuz who would I be otherwise?

A little background. I taught myself digital art when I got Painter back when living in my adoptive parents’ moldy basement as a teen. While the black mold ate away at my immune system and I thought I was going crazy with my brain burning, I made art every day, figuring out each new tech advance I could afford, while taking care of my mom who was dying of cancer and later my dad with dementia. As an adult, I couldn’t art. I had to work and make a steady income. I was disabled, and my neurosis in regards to digital art was really bad. I would spend 60 hours barely sleeping, making highly realistic fantasy characters, and I was always grumpy from it. I didn’t realize at the time, but it was impacting my eyesight, and the more eyestrain, the more it impacted my mood. When I got sick in my 30’s from a mysterious illness that turned out to be MCAS triggered by mold exposure and Lyme Disease, I was bedbound a lot. I used the time to start a self publishing business, writing something not fanfics for the first time, and learning what it took to make book covers for my genre.

About 9-10 years in, my eyesight started failing. The computer screen and my inability to realize I wasn’t blinking enough when working (it’s some sort of hyperfocus mode in my autistic brain) was causing damage, along with inflammation from the untreated MCAS. When my eyesight started failing, I thought that was it. I’d never be able to make another cover for my books again. I’d have to hire out — and as someone who has been disabled for nearly 20 years now, with my disability income being poverty — that is then immediately put into rent, and only rent — I knew it was impossible. I would never be able to put out another book again with a nice cover. I’d never be able to compete in the marketplace. I had lost momentum as a writer because the sickness was taking out my executive functioning, and I hadn’t been able to publish or even check in regularly. The algorithm would ignore me — as it should, because this is how the algorithm on Amazon works. I won’t pretend we live in a bubble: those who cannot afford the means to better themselves will never gain access to increasing their income. This is a reality for many. We don’t live in a utopia of equality and safety nets; people die from poverty every day.

You know what’s not a reality? Artists suddenly incapable of making new art now that AI art exists. Fears that jobs — contracted, promised jobs — are suddenly disappearing because AI art exists. Is an artist owed a job? I was an artist for years, and I had skills I built up, skills that fucked my eyes up from working with computer screens. I broke myself being an artist, and you know what? I was never rich from it. I was never promised stability. I didn’t become an artist because I was looking at a stable career; I became an artist because I loved to create art and I was ill, and I had a ton of time on my hands with few prospects. That’s the same reason I became a writer — not for the money. I had no skills as a writer. I was learning as I went, hoping I might one day make money. I did, eventually, but it was completely determined by my ability to produce work — being sick meant no income. No means to live beyond a supplemented income that is never enough to pay rent in my area (rent has doubled here just the last couple years and my income has absolutely not).

Artists aren’t all paid well. It is not a career anyone goes into assuming they are going to be financially set. I’m getting back into traditional art because it’s the easiest on my eyes, and I’m not thinking I’m going to “strike it rich”. Artists aren’t paid their time, and the ones who are — who fought to get there, or were lucky to be dropped in a situation where it was just automatic — doesn’t mean they were ever owed it. Because we’ve been around. We’ve been competing within a global market for years, which has brought prices down. Competing with hobbyists who just do it for fun and hey, throw a couple $10s their way. Fiver used to be $5. It was a race to the bottom. But does that mean those in other countries with a different economic system are immoral? Bad because they need to make a living too? No, that would be nonsense. It means our economic system is broken, and the people within it — merely trying to survive — don’t want to die from poverty while working their asses off and only making poverty.

Surviving Capitalism

So let’s talk about survival of the fittest in what is supposedly an empathetic species called humanity. It’s not a match, is it? If you claim to give a fuck about others, why are you only supporting some? Didn’t you realize it’s not just artists starving? Didn’t you realize that these individuals being blamed aren’t the ones that created this problem, but are just living in the shit trying to get out? (What, using AI art kills puppies every time? Are you sure, or are you just exaggerating out of some internal fear of change?)

Capitalism is about survival of the fittest, while giving the wealthy the means to survive and gain more wealth, and ensuring the poor don’t have access to those means so they don’t survive. (It’s money. Money is the means to survive in a capitalistic society for those who have the privilege of not understanding that.) Poverty is a promise of everything always being harder until you either 1) manage to overcome poverty, something extremely rare no matter how many Cinderella stories they force feed us. Or 2) die, but not before passing on that poverty. Because it’s generational. Wealth inequality is generational inequality. That means money goes to the kids, and so does debt. That means when you can’t break out of poverty for your family, you’re leaving them in poverty for their family to come. And that is emotionally crippling to work so hard and not be able to lift your kids out of this mess. It’s why parents invest in the horrendously overpriced cost of education, just in case it might work. But it’s just debt, and doesn’t overcome classism.

This is not a failure of individuals, no matter what everyone loves to insist. It is a design of the system of inequality. It is a promise from a government that enforces inequality. Have you ever tried to get on services for poverty in the US? It’s near impossible. They make it so convoluted, with automatic denials at every turn, to keep people from getting help. So they can claim less people are suffering, but instead it’s just a dead bureaucracy ignoring the cries of the poor. That’s a government not afraid of its people, because its people are too busy blaming the poor instead of demanding change. Parts of my country are considered 3rd world conditions, while the US touts it’s amazing wealth and “access” to healthcare no one can afford, etc. You have programmers living in tent cities, while the government claims everything is fine. It’s fine for the wealthy. They’re not living in tent cities (but charging rent that prevents others from having affordable homes).

But this is a Meritocracy!

Did you think you were living in a meritocracy? That’s the big lie they love to sell people. Inequality isn’t “real”, it’s nature based economics because some people have skills “deserving” of high pay, while others don’t. And hey, some artists, they “deserve” the big bucks. They “deserve” to not have competition. Some fuckwit sold a banana on a wall? They “deserved” it, were “owed” it because they were smart enough to play the game the “right” way. They were smart enough, so their merit was rewarded. Those CEOs are “skilled” enough, so their merit is rewarded. Retail workers? They don’t “deserve” a living wage cuz they didn’t pay for their knowledge. They just have skills that we don’t need, right? That’s why shopping is so great without anyone working in the store. Sure sure.

They might as well be calling everyone not making a living wage a whore, huh, cuz those must be everyday skills not valued by society. And hey, it’s much easier to jail people who don’t make a living wage — prisons make more money off the jailing of the poor than the working poor make working.

So how do these high earners know they’re so smart? They could afford to go to the most prestigious of colleges. Those colleges taught them the magic of networking with others in high society, keeping the ranks tight, reinforcing social inequality that reinforces wealth inequality. Hey, Academia decides what intelligence is; they must only let the smartest in. The cost of entry has nothing to do with it. What, a few poors could get in to those colleges? Don’t worry, they’re the tokens so we can claim the system isn’t unequal. They won the lottery of inequality, so classism totally doesn’t exist. They were just “skilled” enough, so they get the elevator up into places with limited spots. It’s their “merit”, right? Merit with limits that only a few are allowed through — that’s what merit is, right? Removing competition by raising people up to a different level and giving them all the things they refuse to give everyone not on that level… Don’t think that’s merit.

Every business book or productivity book wants to tell us if we just have more skills, we can sell our labor for more. Just be the best machine. Don’t get sick, don’t get old, don’t get tired, don’t be filled with existential dread, don’t care about the environmental and social consequences of your actions as you try to dig out of poverty. Hustle. Get more side gigs. Otherwise it’s YOUR fault inequality exists. You, the individual, just wasn’t good enough, and that’s why you’re not being rewarded financially in a way that allows you to survive.

Meritocracy is the shield of inequality. It’s what those who just scraped by use to bury their survivor’s guilt in, while everyone else is screaming unfair in the pit of poverty. You deserve to be better at the sacrifice of those around you because you are “worthy”, while others aren’t. Sure. How else do people justify inherited wealth and inherited debt? At this point they’re conceptualizing good and evil, reincarnation, whatever the fuck they can to justify why some are born with more money than they will ever, ever need, and others die hours after birth because of the absolute poverty of their community. God must have decided they’re better than everyone else. That must be it.

Self Publishing with Tools

So here we are, in a society of inequality. And here comes a new tool — one still only available to those who can get online and utilize it. AI art. An equalizer of one of those merits, those skills some are “god given” and others aren’t.

People using AI art are competing in a system of inequality to survive (aka capitalism). They are using the tools available, with their own intelligence and daring to do what it takes to care for themselves and their family. Every AI book cover out there isn’t some giant, nameless company making money off the work of others. It’s DIYers who can’t afford a cover artist, who can’t afford the hours and money to learn Photoshop like I did. It’s people from all over the world competing in a global marketplace, trying to figure out how to make the returns from their labor be a living wage instead of a pittance. Book covers are packaging to the product of the book, and not everyone is an artist, is a graphic designer, can look at a trend and understand it, and reproduce it the way I can. My brain has gifts (and glitches) not everyone has. It would be damn hypocritical for me, an artist who has worked as a cover artist for others, as well as for myself, to want every author out there to do things a certain way so that I personally benefit from their choices.

Other authors aren’t writing for me to make money — they need to survive. I am not owed.

I am not owed a cover job. I was never owed people to come to me for art work when they couldn’t do it. And I was never going to be owed the money from those who couldn’t afford me. People steal my books all the time, and I know they were never going to pay. This AI thing isn’t remotely as personal — no one is stealing from me. I’m not owed anything from them. It’s just basic competition in a marketplace. I am not here to block the access of other authors from entering the self publishing market and competing on an even footing by using AI covers. That would make me a fucking monster to claim that I had a right, just because I was able to learn how to make digital art, that everyone else had to do it the same way. (That’s the whole argument to student debt forgiveness, btw. Fucking self indulgent, narcissistic bullshit to claim that one’s personal struggle means generations should suffer. Bullshit. This government wants the educated to be poor so they can’t compete with the rich or choose not to work the jobs that refuse to pay.) Fuck, should I force all authors to get sick too, be disabled, start a business when every day wondering if you’re going to drop dead from a mysterious illness? What kind of nonsense. I’m not owed shit from people working to survive.

People in an unequal society thinking they’re owed something, are usually those who have not gained empathy from seeing the harsh reality. They think they’re owed a shield to poverty, to the fears of potential poverty, even. Ha! They think they’re owed stability when, my fuck, what a joke. We’ve got genocides and wars happening on this planet, but hey, some people are owed something cuz a gig economy is totally supposed to be “stable”. I can’t fucking comprehend the elitism of the very concepts being spewed out there as if it’s protecting the rights of artists by preventing competition in a competitive market. WTF? Who in the world thinks like that…? Unless they’re so comfortable they never had to question that a job, like being an artist. might not be a steady income, and that there were other artists out there better that they had to compete with.

You Don’t Need Permission to Survive

So as an artist, as an author, as a disabled person trying to get out of poverty with every little bit of energy I can scrape together, this is my takeaway. Use the tools available to you to better yourself and your family, and don’t let anyone try to shame you for it. These people screaming for equality by hamstringing the abilities of the poor (who can’t afford cover artists) don’t actually care about the real world we’re living in. What, we were promised the world wouldn’t change? That it would always have to be the same inequality in the same presentation? Should we go back to searching for fresh water every day instead of doing anything else? Maybe hand breaking laundry boiling? What a privilege it was to be gifted a laundry machine from my inlaws instead of going to the laundry-mat. Tools better our lives in such amazing ways. The only problem is they’re only available to those who have the money to access them, and as such, the digital economy is still a limited access economy for the poor.

As an artist, I know damn well art is a luxury, one not everyone can afford. So now it’s more affordable, classisms is getting a shake, and the rage keeps burning that something has been taken, and something is “owed”. My fuck, imagine having the luxury to care about the philosophical nature of AI art when people are literally trying to prevent other from using it to survive? What an amazing, fucked up species we are. This isn’t a bubble. Inequality is not some pipe dream nightmare. We are all living in the fray (unless privileged enough not to be). At least book covers won’t all have the same cover models anymore, and I absolutely can get behind that.

Changing a system doesn’t start with blaming the victims

In parting, eat the rich, not the poor. AI art is a tool for artists to streamline their work process, not just for people dipping their toes into cover design. It benefits artist; the ones choosing to make it be a competition might as well be fighting against the vacuum cleaner or the automobile for the good it will do in the long run. It’s already the new normal, and people have to catch up with the tools available to them. That doesn’t make them immoral, and it sure doesn’t make them responsible for the inequality we’re all living in. This inequality has been here long before we were, and targeting one small group of people who have no control in any of it is just cruel and pointless. If you’re worried you’re going to die in poverty from losing your job, welcome to capitalism, where nothing is free and lives are worth nothing. Changing a system doesn’t start with blaming the victims.

tester

PATB Serial: Episode #2

Bloodlust and Mating Rituals
The Paranormal Academy For Troubled Boys
$2.99

A spark of love might burn them all.

Dorian knows the score well. He’s been at the Academy for over two years now, his existence balancing between explosive, deadly power and numb depression. Strong emotions fuel magic, and Dorian is forced to isolate, striving to be as aloof and unfeeling as possible. Things he used to find important—hot guys, wealth, magical talent—none of it matters since the accident. No, Dorian has one goal in life: to keep his magic under control.

He thought he was safe. He thought he had found a quiet spot in the world to keep his magic in check. But when Wylie Doe comes crashing into the Academy, there is no ignoring the sexy dragon shifter or his possessive hisses. Wylie is everything Dorian’s been yearning for, and his magic can’t help but respond.

If only magic didn’t always lead to death.

84,900+ wrds, Published Feb 14, 2020.
Heat level: X

WHAT READERS ARE SAYING ABOUT PATB Serial #2

By Kathryn M on February 14, 2020

This series is amazing and addictive. I was drawn into this fantastic universe and taken on a wild ride of the paranormal. There are steamy moments, funny moments, scenes with action and a feeling of tension throughout. The characters are interesting and really nake you need their stories. I can not wait to devour more.

By Eric Thornton on February 16, 2020

Another exciting powerful read. I am beyond hooked. I cannot wait for the next book. Bring on more excitement!!!

5.0 out of 5 stars
HOLY CRAP!!

By Patricia Nelson on February 16, 2020

This was one hell of a fantastic, amazing, intense, grab-you-by-the-feels, intense, fast paced, fascinating, action packed, tension filled, exciting, emotionally charged, definitely different, dark, thrilling, more twists and turns than a roller coaster, totally awesome, wild, and crazy walk on the wild side. I can’t wait to see what happens next!

READ AN EXCERPT FROM CHAPTER ONE

Shhhnk. Shhhnk. Daggers whizzed past Theodore in the dark. Crack!

Theodore hissed as he dodged blade after blade, the last dagger biting deep into the surface of a solar panel right next to his hip. His long crimson hair looked like a waterfall of blood as it floated down his back when he straightened from his roll. Theodore held himself still, his ears open for any telltale noise. His leather despoiler coat twisted in the wind rushing across the rooftop of the Redhem police station where he was standing. At the rustle of wings behind him, Theodore slashed, the blade of his sword slicing through the body of a raven before it could sweep close. Snarling in frustration when he saw it wasn’t his target, his sword lashed out into the dark around him, just catching a shining golden lock of hair before the sorceress escaped.

While Theodore’s diamond blade sword appeared clear in the unnatural blackness of the spell the rooftop was enchanted in, the sorceress he was battling was actually invisible. Well, the pieces of her that were attached. Theodore sneered down at the fine strands of hair the skinner had left behind as he listened for her approach. The sorceress was wearing the coat of a chameleon shifter. Not the coat the shifter might have worn when it was alive—no, that would have been too sane. The sorceress was wearing the skin of a dead chameleon shifter, the poor human hunted down and killed for its scaled flesh. They had turned its skin into a coat, and used the shifter’s power to hide the treacherous skinners who killed paranormals for sport and profit.

Fssssh! Something hissed through the darkness.

“Fuck!” Theodore gasped and jerked his head to the side, just missing a dagger to his throat. He whirled, his coat whipping up around his legs. He heard a burst of wicked laughter before she was gone, swallowed up by the darkness. A bird screamed under Theodore’s blade, its scattered feathers the only proof that the sorceress had been there at all.

She was fast—unnaturally fast. Whatever spell the sorceress was using, Theodore couldn’t trace it while she was wearing the chameleon coat. He had only his ears, nose, and the sensation of the air shifting every time the sorceress appeared close.

He had hoped his night vision would be an advantage against the skinner, but it had only leveled the playing field, making them both invisible to the other instead of Theodore blind to the sorceress. But while the skinner had the advantage of years of hunting shifters, Theodore was a born hunter. The beast inside him only grew larger, darkness flickering through his vision as his dragon, Sever, laughed at the game of chase he would eventually win.

‘She fears death… It will be her undoing…’

Theodore ducked down as a blade flew out of the darkness, refusing to comment. He shot his hand up, his sword slicing through a raven, the sound of its feathers adjusting on the breeze alerting him to its presence. For each familiar he destroyed, it felt like two more were waiting to replace it, hiding their sorceress mistress.

He first thought it was an illusion, the way the sorceress’s familiars were taking on her form, then reverting to birds the moment his sword slashed true. Now, Theodore wondered. With strike after strike, she had pushed him back, found his flesh or damn near close with blades, talons, and magic, and then popped away before he could retaliate. It wasn’t an illusion; the sorceress was every bird until she wasn’t.

“What the—!” The ground beneath Theodore’s feet shifted and trembled. He snarled and quickly leaped, landing on a platform next to an array of solar panels. The roof where he had just been standing cracked, deep fissures appearing in the concrete moments before it crumbled, dissolving into a cloud of dust. Theodore strained his ears, but there were no signs of injury from below. He could only hope the personnel left in the police station had evacuated and hadn’t already been slaughtered by the skinners, or whoever else might be down there hunting for a dragon shifter.

‘Above…!’

Theodore gritted his teeth at his beast’s warning, feeling the air pressure change. What was first a medium sized raven swooping above him disappeared from view as it morphed into an invisible, full-sized woman. He slashed his free hand up, hissing in pain as his injured shoulder protested the move. It was worth it, Theodore’s talons finding flesh moments before black feathers sprayed out of his hand.

“Do you bleed bird’s blood too, sorceress!” Theodore roared and slashed behind him, anticipating the attack before the telltale shifts of air could even give it away. There was a gasp, but the crimson that splattered onto the solar panel next to him and the dead body of the raven that fell to the rooftop were not the sorceress he was chasing.

‘We will kill them all… Then there will be no confusion…’ the dragon rumbled in Theodore’s head with a determined grunt.

“Fine enough, beast, if the fucking fluttery things weren’t multiplying,” Theodore gritted out. The darkness was thick with the ravens, their eyes and talons glinting with a cold intelligence connected to the predatory mind controlling them. When he swung his sword again, two birds fell at once, their angry screams cut off as they dived toward his face. A blade hissed through the air, and Theodore leaped sideways, rolling onto the rooftop between the obstacle course of solar panels and uneven platforms.

The game would have been less annoying if his energy wasn’t so low. More so if he didn’t have a teenage shifter to keep alive. Theodore reached for a fresh vial, popping the top and downing the contents. A dark, cold numbness replaced the hot throb in his shoulder, and he sighed in relief.

His eyes searched the ground, but his blood wasn’t spilling freely just yet. He could feel the wound was deep, muscle and tissue damaged from the hatchet to his shoulder, but as long as the gloo kept the blood in his body, he had more important things to worry about. Like the way the sorceress had focused on his damaged side, hitting blow after blow around his wounded shoulder in the hopes of wearing him down. And frustrating as it was, it was working.

‘We need blood… sex… I hunger…’

“We need energy, you horny imbecile, not your insatiable hungers.” Ignoring his dragon’s disgruntled huff, Theodore slunk low to the rooftop, following along the length of the solar panels, hoping to keep at a level where the ravens would not be able to easily reach and surprise him. Theodore’s sharp, violet eyes searched through the unnatural darkness he had summoned. His beast could see in the dark, something he was certain the skinners could not even with all their stolen shifter magic.

There were two in total, at least, two of the paranormal butchers who were willing to show themselves up on the roof. Likely because of the third Theodore had already killed. From the little he had heard the two skinners talk, the dead one was their brother and he was now on their kill list. Of course, if they knew what he really was, they wouldn’t just want to kill him. They’d butcher him like that chameleon shifter and wear his scales as a coat.

‘The pattern is wrong…’ Theodore’s inner dragon rumbled when a half dozen ravens swooped in and golden hair flashed under Theodore’s blade, sliced free of the woman who slipped away just as quickly. Ravens collapsed dead on the rooftop, their blood staining the concrete while Theodore seethed, his senses straining.

“What pattern?” Theodore demanded, snarling down at the broken bodies of the birds. No matter how hard he stared at their twisted limbs and scattered feathers, he couldn’t find what the beast was talking about.

‘Not the birds, but the sorceress… She’s not attacking to kill…’

Theodore’s eyes widened minutely, and he nodded once as it clicked. The sorceress wasn’t trying to kill him, not seriously, anyways. Theodore had assumed it was fear. The sorceress had correctly noticed that physical touch could give him power over her, his allure capable of breaking through her protective wards on contact. She had kept her distance, using blades and birds to try to overwhelm him. Now Theodore could see what his dragon did in her movements. She was attacking to distract, not to kill. Whatever the sorceress’s game was, right now she was buying time.

It was as if the moment he realized it, the sorceress readily gave it away. The magical signature of the male skinner trapped in Theodore’s snare suddenly snuffed out, erased from reality in an instant.

‘Chameleon…’ the beast warned, a low growl bubbling through its chest.

“Of course, the coat!” Theodore bared his teeth, the white planes now the sharpest of daggers. The sorceress was protecting the one in the snare. Theodore knew because the moment she took off her coat to hide her kin away, her own magical signature revealed, a glowing, easy target to his beast senses after she had thrown so much of her magic around.

“The sentimental fool,” Theodore muttered, readying his sword in the direction he sensed the sorceress. He would not hesitate, would not fail. He could not allow a legacy of skinners to hunt shifters down like they were nothing more than animals—!

His dragon snarled the same moment the wind shifted. Theodore whirled when the magical signature he was focused on blipped from the roof and appeared blocks away, somewhere among the suburban streets of Redhem. “Impossible! No one can build a portal that quickly!” There were anti-teleportation wards all over the station, including the roof. If she was flyckering, there was no signs, no shifts in the air to suggest it. The ether was completely intact as well—none of it made sense!

How the fuck was she moving so quickly?

‘It doesn’t matter… She’s after the hatchling…’ Sever rumbled darkly, his presence growing greater until he was a seething heat in Theodore’s core. ‘We must go after her before she kills him…’

Theodore scowled, partly from the grimness of the situation, partly from the term his dragon insisted on using for Wylie. “The kid’s eighteen. Hardly a fucking hatchling, even if he is ignorant as fuck.”

‘His dragon has barely emerged…’ Sever muttered back defiantly. ‘We must run if he is going to survive… Now…’

“No, I have a better idea,” Theodore drawled, and a deadly smile flickered across his lips. He sheathed his sword in a practiced move, and raised arms up at his sides, ignoring the stiffness in his shoulder. “The sorceress has given us all we need. She revealed her weakness: her heart.”

Theodore turned toward the collapsed part of the roof, knowing that on the other side of the hole was where his trinity snare had been sprung. The skinner who had stumbled into the trap might be under a chameleon coat now, but invisibility did not make him immortal.

“I don’t need to see you to kill you, skinner!” Theodore shouted as he raised his magic. The dragon’s power thrummed through him and shook the air until everything around him shuddered and began to bend down toward the ground. Metal screeched in protest as the angled solar panel array twisted and bent, glass shattering and shards flying in every direction as it crashed down. The edges of the broken roof cracked, fresh pieces of concrete slamming down into the police station below with a force far greater than gravity. There was a thudding sound, smack after smack of bricks clattering down to the concrete as they were wrenched loose from the structure that made up the rooftop door and stairwell to the lower floors of the station.

Theodore gritted his teeth, his fisted hands shaking from the strain of his spell. His energy was low, stolen by the blade that had sliced deep into his shoulder, but the threat was clear. His intended result was reached, and the skinner hidden by the chameleon coat cried out as he was smashed down to the rooftop.

“Is it worth it, legacy? Is this how you Briargraves operate?” Theodore taunted, his voice full of poison and accusation. “Do you leave your family behind to die while you go off to murder children?” He took sure steps around the hole in the roof, his senses focused on the whimpering voice coming from the other side of the stairwell. “What will it be, Briargrave: a life for a life? Does that seem a fair price to you? Did you lose kin when you slaughtered the chameleon whose flesh you’re hiding in now?”

Theodore’s steps were sure, deliberate, the polish of his blood red shoes still gleaming for all the fighting he had done. He concentrated his magic on his shadowy goal and was rewarded with a fresh scream of pain. “You’re chasing a dragon, after all. The price should be higher. Maybe all three of you should die just for the privilege of stealing one dragon’s life…”

“You’re… you’re insane.”

Theodore sneered and slashed his hand down. The stairwell shuddered where bricks threatened to topple from the force of his magic striking down only feet away. The skinner screamed, the panicked noise breaking off in a low whine.

‘We’re running out of time…’

Theodore pursed his lips. He was counting the seconds in his head, adding up each moment the sorceress had free rein to attack Wylie. Michael was there and would do his best, but Theodore had seen the skinner’s tricks, her speed, her deadly accuracy even when she couldn’t see her target. She would not be easily defeated.

‘He’s not breaking…’

“He will,” Theodore spat, glaring into the empty darkness where the invisible skinner was gasping heavily as he tried to breathe around the weight crushing down his lungs. The sorceress had protected this one because he was weak, one who needed protecting. Theodore knew his real leverage was here; he just had to find a way to use it.

Hands and shoes scraped desperately at the rooftop, the skinner trying to break free of the spell from only a few feet from where Theodore was standing. Theodore drew his sword, the distinct sound of the blade pulled from its sheath slicing the quiet of the dark rooftop. Even the skinner’s gasps grew hushed as he tried to hide his every noise from Theodore’s ears.

“Is your life worth the trophy of a dragon, skinner?” Theodore demanded. Fighting off a wave of dizziness, Theodore crested his power up again and used it to crash his magic down on the part of the roof the skinner was trapped. The concrete creaked from the great pressure, and Theodore’s eyes narrowed when he heard the telltale sound of a rib snapping.

“Wait!” The skinner shouted hoarsely. “Fuck, wait!”

“No.” Theodore’s eyes gleamed with cold rage, and he pointed his sword toward the cracking of bones, moving it as he sought flesh. “You have nothing I want. I will kill you as you are. No one will be able to find your body. No one will bury you. No one will morn you. It will be a fitting death, skinner, you bleeding out in the skin of the shifter your family murdered.”

“Evelyn… Ev, he’s killing me…” a voice whispered, nearly suffocated under the weight of Theodore’s magic. “Ev…”

“She doesn’t care about you, skinner,” Theodore snarled and raised his blade. “The only thing you monsters care about are yourselves.” Pinpointing on the frightened exhale, Theodore swung his sword down.

“Ev—Evelyn!” the skinner screamed out, his voice reverberating with magic.

 

Wonder what happens next? With a paid membership you can read it all!

June 22 2023

Checking In

Just wanted to let you all know I’m still alive and up to creative mischief. The new meds are working, and I’m pretty much back to my old self (whoever that is @_@).

We got a surprise leak in our garbage disposal, water in the basement, and my reactions were… fine. Allergy fine, not mast cells over reacting and making my entire existence miserable. Although I got a big whiff of smoke yesterday evening, and that caused the other reaction, and it was pretty shit for a bit.

It’s such a contrast — one I had no idea was even possible. Because I guess for most people allergies are just, you know, a runny nose and feeling kind of sleepy, a little fuzzy. Not the insanity I’ve gone through all these years. There was a difference, but my ignorance shouldn’t have made those who treat allergies so ignorant, yeah? Like, I was really good at communicating my symptoms, but the medical world just didn’t understand what those symptoms fit into then.

Text based games

Anywho, I’m back to coding up the database, currently looking at the interactive novels and text based game side of things. Because my eyes are so much better, I think I could handle at least fighting with an AI art program for a bit to get art backgrounds for the text based games I want to make. I don’t think they’re sophisticated enough for character art — consistent character art that will look like the same character. But backgrounds? Sure. They’re easy enough to edit if things don’t look quite right.

The main thing is I’m looking for writing that doesn’t ask me to edit extensively the way my current writing does. A script is visually easier for me to handle because of how it’s naturally broken up, as well as far less focused on certain elements of a story, such as building an atmosphere. The imagery can take some of the burden — the whole “a picture says a 1000 words” thing. And it’s not that I don’t enjoy building atmosphere and such, so much as, editing is shit on my eyes still. Editing this is shit on my eyes. Reading glasses might change that, but it’s not happening soon, and that’s okay. I’m looking at options instead of passively waiting.

Coming to terms with my ever changing limits has really pushed me to find smarter solutions to things. Affording reading glasses with prism lenses is a long way off after years of being ill, so I need to get back into this writing thing, accepting these limits and looking for ways to navigate as I am, instead of how I used to be. There’s also just so much life I’m trying to get back to. A decade of illness interrupting — actually, far longer. It’s been since a teen living in my adoptive family’s moldy basement, wondering why it felt like my brain was on fire.

There is very little “stable” that I’ve experienced that I know to get back to. When I look back, it’s PTSD from a traumatic home life, followed by years of foster families, and then recovering when adopted… then becoming ill from this condition and watching my adoptive parents both die, my mom right after I graduated high school, and my dad a handful of years later, most of those years me taking care of him while he had dementia. All those years after that were panic, homeless, working to survive without a degree because I couldn’t take care of a parent and finish college, and there was no safety net once they were gone. Not when this condition was 100% active with no one knowing what it was or how to deal with it (but very good at gaslighting a young person who was doing everything to try and get healthy and stable.)

A new pace to life

My relationship with time has to change. It already has with space — I’m doing well getting the years of exhaustion out of my house, cleaning up the piles that have been waiting to be addressed.

I actually took down the backroom cleanroom this week. I plan on painting it next month — getting a big 5 gallons of paint and tackling the hallway and 2 walls of the kitchen as well. I had done some nice decorating of half the kitchen last year after I had built my art storage cupboards, but the old dingy blue paint on the other walls has been here through a lot of renters. It’s the same paint in some of the closets, revealing it was some version of original before other people came in and painted.

That back room will likely never be my bedroom again, not with the way the air flows in this house, but it can at least be a great space for art storage and painting large canvases. I want to make some tables for the kitchen the way I did for my bedroom, just a simple desk/counter thing that forms an L on one of the corners of the room. It’s such a small space, but the design would give more surface area as well as more walking space compared to the big table we have in there now that takes over everything (even though it’s too small to actually eat in the kitchen.)

Sawdust is absolutely one of the triggers that sets of this condition, the same way smoke is, and ammonia, heat — the summer weather turns me rosy cheeked and straining to breathe. Oh, and I discovered the scent of cedar is a trigger. Fuck well-made furniture for storing clothes, because it is all cedar and kills me. It means getting these supposedly simple projects done isn’t actually that simple. Even if cut to size, I need to sand and seal anything wood that comes into the house, and that means sawdust. And if the sealer is shit, or worn down from cleaning, I have to go through the process again cuz the raw wood does come through and the scent triggers the condition (learned this firsthand with my desk).

But… my reactions are better. They stop now, instead of going on for weeks to months of misery. The meds work, and as long as I don’t become allergic to the meds (something unfortunately very common with MCAS) it should be good. I can’t wait for things to maybe go bad again. This is the time I have now, and there is so much I want to do.

Making time for arting

It’s kinda weird to talk about art on this site. It used to be my thing before the illness knocked me down and I started writing to cope. I went to school for art and music. College was to help me recover from my adoptive mother passing and trying to figure out what I was going to do after spending so much time thinking of her health and aligning everything I did around it. But… there was a lot of mold in the college classrooms. The calculus room and history, in particular, I remember always getting sick…

But yeah, art held a lot of healing for me, especially therapeutically in regards to PTSD. The same with writing — there are a few ways to hack into the subconscious of the mind without needing to be dreaming, and writing and making art can put you into that trance like state. Something happens in the nervous system while there, and then when you come out of it, not only do you get those benefits, but you have something to show for your efforts that can be shared. A bit of the hero’s journey as you delve into the dark, deep woods of the psyche.

I’ve been playing with UV resin and mixing my own watercolor paints. I always wanted to make my own watercolors, but just never did… Chronic illness makes everything so much harder than it needs to be. It makes you need to do things immediately, or know it will likely never happen, which makes the pace of life even more difficult. Rushing, bursting the little energy you can all at once before the inevitable breaking and crash. It’s a destructive pattern, but it’s required when it’s all you can do. So I’m enjoying relearning what it means to rest instead of being broken, to pace and remember what time actually is, how to experience it, how to experience being in a body not suffering all the damn time.

They’re mostly pearlescent colors. Metallics, and some that have little bits of glitter. It’s kind of a big deal for me, not only because I’m finally making the watercolors (and doing it in a far cheaper way than buying them), but I’m making shiny, sparkly things that just a month ago would have been impossible on my eyes.

I saved a lot of things out of stubbornness. I didn’t think I was going to actually get to this place of getting better, but I refused to give up… And, if I’m being brutally honest, it takes a lot of energy to throw away your dreams when you’re already tired all the time. Most of the art stuff I have stored in the back room is expired, especially paint mediums and such. I’m going to be throwing out a lot still, but now it feels okay because it’s to make room for new. It’s not about holding on, stagnant, but growing into the person I get to finally become after all this.

At some point, my life is just going to be about living it. I won’t be focused on the past because all I had was the past when ill in the moment. I had given up on the future completely, and was doing everything to escape the now of being in an pained, exhausted body. Now there’s room for something else when I look forward.

I don’t know what I’m going to want to write as I grow into who I’m becoming. There are some stories that I need to finish telling. I just don’t know if I want to live in such unhappy moments just to create contrast to the happy ones in some of these stories. Because my writing is so connected to exploring trauma, there’s a bit of a war happening inside me about what’s allowed to change, what needs to be honored, etc. So I’m glad for this pause, for this chance to really look at what I want out of writing now that it’s less about surviving the misery of the past or of chronic illness, and more about creating something new to think about.

It’s time to have fun again with writing. Editing isn’t fun — although developmental draft editing is probably the most fun. You ever stumble across a story someone else has made, or a show, etc, and just want to tweak it into something so much better? That’s developmental draft editing, but it’s with your own work. Where you make a rough draft and poke and prod and tear it to pieces and move things around until you’ve developed the potential instead of what was there.

It’s a great creative process my brain adores. And I think that’s why I like the idea of text based games with multiple paths; you get to lean into that process and reward yourself and the reader/player with all these different, interesting stories born from one set inspiration.

I think that’s probably enough of my rambling for now. How funny to think I didn’t have anything to say, yet here are all the words claiming otherwise.

Starting a Creative Practice

Creative practice: Refilling the Well with Art

As the smoke from the Canadian wildfires fills my neighborhood and little house with pine soaked soot that triggers my condition, I thought it was a really good time to talk about refilling the creative well through a creative practice.

My body would like to hyperfocus on survival right now, even though we are doing a perfectly fine job surviving. The anxiety this condition gifts me in these moments of a flare has a lot of chemical energy. Energy that needs guidance to prevent it from turning into neurosis, catastrophizing, and just generally feeling miserable.

This post is about becoming aware of the relationship we have with our bodies, our psyches, and the environment we’re in to see how that has an impact on our creativity. And why in this place of self-awareness, no matter the circumstances, no matter how far away we might feel from doing the artistic endeavor we have in mind, we are still helping ourselves to create.

So my understanding of creativity has changed a bit with being able to push back a lot of the numbness that comes along with this condition. I’m doing a lot of nervous system focused work (vagus nerve stimulation with a TENs machine), along with calming the immune system and stabalizing the mast cells. With the healing of my nervous system, a lot more sensations connected to emotions and thoughts are turning back on. Creativity is no longer just the logical problem-solving that my brain would like to categorize it as. Creativity is also an exploration of emotions and sensations, and how we feel about the things that come up in our work.

There is a being, not just a brain, in the creativity relationship. And that being needs to feel to be connected to the work it’s making. And that can be really difficult when dealing with chronic illness, where your sensations might be overwhelmed by pain all the time, anxieties, feelings of worthlessness, or hyperfocus to distract from any feelings at all. Chronic illness demands a lot from a being, not just the body. And even though there are many lessons to learn and ways to evolve into a greater version of oneself that never would’ve been available without such an intense catalyst, it can also suffocate the creative process when it’s too much.

Poverty can suffocate the creative process. Poverty and chronic illness tend to go hand-in-hand, both perpetuating the other. When you need your creativity to escape anything, it’s very easy to lose sight of the value of creativity outside of that external goal. It’s hard to remember why you turned to creativity before it became eclipsed by the desperate goal to survive.

 

Creativity versus the World

When creativity is muddled by one’s environment, the relationship with creativity becomes distorted. Our creativity is a reflection of ourselves, but sometimes it becomes warped into what it’s being asked to be by the problem we’re trying to solve. We start believing that creativity is a thing we do, an entitlement, something that should be able to turn on at a moment’s notice, forever ready. It should never lead us down the wrong path, but only the one we want, quick AF, and that it should automatically deliver us our goals.

You know, like it’s technology, something built to grant us our wishes and work exactly as we demand. We treat creativity like it’s one of the products we make, instead of the source of creation.

When one gets stuck in that dismissive perspective of creativity, you can start getting frustrated when it’s just not working the way you want it to. You can start getting angry that it’s just not delivering. And you can start feeling worthless, because it’s you, isn’t it? You’re the one not delivering. You’re the one not solving all your problems. You’re the one failing, and maybe you’re just not any good at this creative stuff. Real creatives make this look easy, so you can’t actually be a creative. You’re just an imposter.

A defective imposter, at that. (WTF brain? Why do you have to be so mean?)

We are bombarded with messages from people who want to make money by telling us how to feel about our relationship with the creative process. They tell us that the process is easy, and you just need to do these quick tips, buy their book, sign up for their course, invest your time and energy and money into solving your creative deficit. And that if you invest enough, eventually you will be rewarded with the results you want. The results you’ve been promised — the ones all those other creative’s are getting.

Surely, that’s what they did, right? They don’t struggle. Go on Instagram and see all the creative’s who make their work look easy. It can be easy for you too. Just invest in solving your creativity problem.

The thing is, there’s no such thing as a creativity problem. There’s nothing wrong with anyone’s creativity; the problem is in our relationships with ourselves.

Creativity lives within

We forget why our creativity exists. We forget the inner gains as we tunnel vision on the outer goals from creativity. We forget that beings don’t exist to do the same thing every day like machines. And by asking ourselves to do that — no matter the goal — is us asking ourselves to come up with creative solutions to harm ourselves.

We are not characters in video games that get better by leveling up individual stats for hours upon hours a day. There is a whole being that needs to be addressed, that needs to be fueled at all levels, and creativity is connected to that whole being. It’s not like a limb where the stress is felt only if you overwork the joint, or pull a muscle, or break a bone. Creativity lives in our nervous system, in the three main brains in our skull, in our muscle memory, our reflexes, our sensations of the world. It’s in our memories of the past, in our relationships with society, and with being human. Creativity is a part of our psyche, just as much as a part of our logic, and if we are doing things that fail to connect all those relationships properly, creativity can struggle to flow.

Chronic illness turned the question of what I wanted from my body into the immediate, frustrating answer of “I just want it to work”. And of course, the thing I wanted was impossible to have. I didn’t want to accept what I was experiencing. But it’s in acceptance that we remove a lot of the stress of chronic illness.

We already have a world out there refusing to accept that people break, that rest is required, that the demands being placed upon us to be allowed to live, never mind the quality of that life, are not only unrealistic, but damaging. Capitalism is an abusive relationship, and when you start believing the messages being sent to you, basic aging is suddenly a failure.

Creativity isn’t a light switch. It’s a state of being, and it’s only truly accessible when we accept it for what it is instead of trying to distort it into something more convenient. Feeding it requires taking care of all those things that we want to ignore as we focus on our goals. It is more demanding than maintaining a machine, because we are very good at ignoring the very big demands that are placed on us every day, and creativity takes a hit as a result. And if you have chronic illness, and are dealing with financial difficulties, or relationships where you are expected to be at a certain level all the time, no matter what, those stressors compound exponentially.

If you are someone who doesn’t accept. If you’re someone still asleep, thinking that you can force your way out of the situation of life with just a little more breaking of yourself for later gain, you are the problem that is killing your creativity. There’s only so much a being can take.

So how do you repair your relationship with your creativity enough to allow it to flow?

Accepting The Impossible, aka, Mindfulness

It starts with acceptance. Accepting all the shit you don’t want except. Accepting the emotions that you’re running from. It is shit to feel like a failure, and no one wants to feel those feelings for long. But in acceptance of those feelings, is also the acceptance that you weren’t given a choice.

This is life exactly as it is.

Unfair. Painful. Full of extremely unrealistic expectations from a species that is destroying the one planet it can survive on. All these demands are coming from a place of insanity, and internalizing them can only spread that madness further, and break us.

In a place of acceptance is the ability to feel again. It’s the ability to reconnect with your body and your environment. It’s the ability to reconnect your emotions to your thoughts and sensations, and to have a richer experience of being.

It’s about letting go of those expectations and demands that claim you can only do things one way: goal centric. The insistence that you should find a way to be productive while being creative.

The trap of creative productivity

There’s something funny about the concept of productivity, especially in this current world. If one were to think of a production line, productivity would be about making more things people need, faster. What does productivity currently mean when it’s being sold to us by the business self-help gurus? It’s about making money. It’s about making meaningless things, more superficial things, faster, so-called “smarter”, for the end goal of money. Where everything you do turns into a way to make money. Everything. Hey, you could write a song right now for fun… but would it sell?

It’s suffocating. Paralyzing. Until can’t do a fucking thing without having to figure out if you can make a cent off of it at the end, and they want to call that self-help. Talk about psychosis.

It’s not just art though. What do you want to do with your life? What do you want to be when you grow up (or grow older)? Will it make money? Will it be attractive to a mate? Will it make you into a worthy person deserving of love and respect? No, not in this world? Then do the thing that makes money.

Don’t dream. Don’t hope. Don’t wish to be better or to change the world — that’s not going to make money. Don’t BE unless you fit into this form. Settle. Then production line it.

Our environment decides a lot about how we feel about ourselves. It frames everything. And when you are stuck in an abusive environment, be it the ability to blame a bad job, a hurtful person, or dehumanizing societal norms, it is hard to find perspective. You’re in it, and become a product of it.

This isn’t a go live in the woods blog. We have to find balance.

These messages and distortions of us absolutely limit and cripple the creative process. We stop asking ourselves how to create, and instead focus on getting as many products out there as possible. It becomes all about the goal and not the creation. We lose the journey of exploration, the sinking into the psyche and pulling back knowledge, inspiration, emotion, pain, and reflections of being that we can share with others. Connect with others.

I’m not saying you can’t create to make money. I’m not even saying that can’t be the reason you show up every day to create. I’m in no way blind to the capitalistic hellscape I’m forced to participate in. If anything, I am still too connected and distorted by it.

What I am saying is that you cannot turn to that abusive relationship to maintain your creativity. And your creativity will be harmed because YOU will be harmed. There is no way to minimize down a being’s worth, their time, their talents, their reflections of emotions and philosophy into a production line, without inflicting great harm on a person. It is dehumanizing, and creativity cannot flourish in such a two-dimensional space.

Creativity is not a get rich quick scheme. Finding your bliss shouldn’t be one either.

Do not go into the creative field to make money, if you want to remain a creative by the end of it. Oh, we love the lie. We love to say that we can have 2 goals in a business model, the first goal to make money and the second to make the world better, or make the best product, or, I dunno, clean up the environment, etc. It doesn’t matter; the first goal will always take precedent. Always.

This is why businesses exist: to make money. Deluding yourself otherwise is bullshit. When you are participating in the act of making money, what your skills and talents are will never be as important as getting that cash at the end of the day. You will be valued by that cash, your entire sense of self slapped with pricetag of how much you are worth in this endeavor. It is not a community. It is not a lovefest between you and fans. It is a job. One that limits how you present yourself to the world to maintain that job. One that asks you to create things you might not want to create to maintain that job. One that can never truly be a reflection of you as a being, because the purpose of that job is cashflow, not self realization.

Do not turn to your job to become a better person; it cannot facilitate it. Become a better person and bring that to your job.

Or change the goal of your job, and give up trying to compromise. Maybe you’re already independently wealthy and you can do that. Maybe you’re like me, and your creativity won’t flow when you’re trying to compromise with this shit. Wonderful. Otherwise, stop drowning your creative process in a field that doesn’t reward the essence of creativity. If repetition is required to make a buck — if the production line is required for your creativity — you can’t go to work to refill the empty well. It won’t work.

Dedicating space to create

Exploring creativity outside of distorted goals is a good way to remember why one creates, and what creativity provides. Make a practice of it, a play date, a therapy session, a rest, an indulgence. Give yourself permission, and then give yourself time. Fall in love with what you do by doing something else that doesn’t have the same demands and expectations. And do not allow yourself to place demands on your practice of creativity.

What do you need? Not much.

You need a space to create. A physical space, one ideally with a clear schedule free of interruptions. And probably most importantly, you need to show up, ideally with a guilt free conscience and curious to explore.

You do not get to fail. Failure comes from a place of expectation, and creativity cannot be about expectation. It’s about exploration. It’s about feeling the process, and allowing it to be exactly what it is in the moment. Allowing yourself to be exactly who you are in that moment, the frustration, insecurity, boredom, curiosity, seeking, worried about time, lonely, in pain, etc.

You also don’t get to be bad at it. There is no expectation of a result, and therefore no way to judge if you’ve achieved that result or not.

When lost in the creative process, exploring, results meaning nothing. You can throw it out at the end if you want. You can daydream and never write a single word down. Just as long as you experience the process, whole body, and accept it all as it comes.

Creating for creativity’s sake. If you need your creativity to flow, you have to focus on the actual problem. You. You need a reset. You need a place to be, to do, without judgement, without expectation, without the noise and stress the world bombards with. You need a place to be free, so create it.

The creative struggle with my personal environment

I’ve been seeing my creative deficits since getting back into writing. It was much easier to focus on the executive dysfunction’s, partially because in some ways they’re easier to face. They’re also easier to communicate. I can say working memory, or attention span, and people can relate without asking too much from themselves.

It’s harder to communicate well in regards to — I don’t want to call it writer’s block, because it’s not. I could absolutely sit down and write. But I couldn’t feel what I was writing, and feeling is what writing is all about. And every time I would delve deep, and try to find where those feelings have gone, all I could find were feelings about chronic illness, about disability, about poverty, and about the society that has framed these things into abnormals states of being — there are millions of us with chronic illness and disability. Hundreds of millions of people are in extreme poverty, while billions are in societal poverty. It is normal!

But the world defines us into failures. Invisible. No one wants to hear about reality when they’re turning to the computer to escape reality. And the harder it was to feel, to connect with my body and my emotions, the more I internalize those distorted, frankly fucked-up messages that I was the problem. That I was abnormal. That somehow something intrinsic in me had made this the obvious end result, no matter how much I fought to get out of this pit our society keeps dark for those they don’t want to see.

So then my creativity came about in defiance of that. Still not feeling, still not accepting, still running away. Seeking ways to break myself to help escape and feel the other things — the exhaustion and frustration and failures — so I wouldn’t have to feel so broken as a whole.

A part of me saw that as long as I was physically ill, I could understand why I was failing, why I wasn’t being productive enough with my time and therefore wasn’t living up to the distorted capitalistic message. By participating in my self-destruction physically by refusing to rest, by investing all my time and energy — energy I don’t have — into getting out, I was finding a way to emotionally free myself from the abusive messaging bombarded at every single person when it comes to self-worth and how they spend their time.

I just had to keep breaking myself physically, so I wouldn’t have to hold myself up to the standard that was killing me to try to achieve.

Creativity is a sword with as many edges as you can imagine

Our creativity is a gift, that can create a door to these psychological cages we participate in building. We might have never come up with the initial message, and we certainly didn’t set the external world stakes for what happens if we disregard those messages and fail the expectations this abusive society gives us to survive. But we do participate in believing the message.

We participate in how we frame ourselves to that message, and how we think about ourselves in relation to that message. We can cage ourselves and that message, exaggerating and amplifying it, only ever comparing ourselves to that message, and calling that message “truth”.

We do this to ourselves long after the world changes. And from that mental cage, we leave no space for change.

It takes a lot of mental energy to trap oneself. It can also take a lot of creativity to keep oneself trapped, distorting any positive messages that point out that things aren’t necessarily the way we keep insisting they are. This also drains our creativity, and distorts our relationship with our creativity. It’s a skill, creating depths of emotion and sensation out of basic thoughts and words. That skill can absolutely cut us just as much as it frees others.

Letting go to be able to receive

The open palm. I don’t visualize a lot of things, but during my PTSD therapy years back, the open palm was this huge breakthrough for me. Where I realized there was no way to let anything in, no way to seek new information, new truths, new perspectives, etc, if our hand was clenched upon an absolute. As long as your holding something tight, be it an idea, belief, pain, memory, you cannot reach out to accept anything else in. One has to release it all to be open to what will come.

This includes how we see ourselves. How we see our past. How we see our journey and where we think we are on it. None of that can be re-created or reimagined if we are so tightly clenched to our preconceptions and definitions of things that are purely conceptual.

I think mindfulness mixed with art therapy is extremely healing. It helps to break down expectations, and face that we are the ones giving it value. That when we feel the worst stakes crushing down on us because we have failed to meet an expectation, we are the ones who participated in that relationship of thought and punishment.

When we do it because we lack self-awareness, it can be extremely damaging. But gaining self-awareness doesn’t mean it’s not extremely hard to let go. So there are things like a practice of art, a practice of creativity, that shows us it’s okay to let go and explore something new, and to be something — someone — different in that moment.

You don’t have to conceptualize consequences for being free. You can just be free.

Find ways to seek new sensations. I always wondered why art rarely focuses on olfactory senses, considering how memory works, how intense a simple smell can have on our emotions. There’s music, rhythms, and dancing, and moving that can unlock muscle memory and engage the nervous system.

There is the act of making visual art, finding a large canvas to move around and explore with one’s whole body, not just the eyes. Paint over it a million times — paint with dirt; it doesn’t matter. It’s the act of letting your body make a mark, to live in its environment and be a body being that’s important, not holding onto the results.

There’s telling a story, not worried about which words to use, using your whole body to tell it, possibly recording it to get the emotional cadence from the voice. Singing — one could try singing a story like an opera.

It’s about feeling, and letting art lead the way. Making art to help to connect with one’s feelings, giving them a safe outlet that’s contained for those who fear being overwhelmed by their feelings. Creating space for art can be about creating a safe space to experience feelings and sensations that one does not feel safe to have in their everyday world.

Trauma can make feeling seem dangerous. Art can provide safe space and acceptance. Ugly art, strange, distorted, raw, uncomfortable art can be so cathartic when dealing with trauma and trying to find worth in what feels worthless.

Reconnecting with the source of creativity is reconnecting with being alive

It’s so important. It is so healing. It’s a journey that never ends because creativity is what every living being is. Anything and everything you do can be creative, because it’s a part of existing as a living being.

We are not unfeeling machines that only do what we’re programmed to do. We are not inanimate objects for the background of someone else’s existence, meant to be neglected and dissapear because we don’t fit the mad conceptualizations of society. We are an amazing collections of atoms that have formed elements, cells, thoughts, will, and actions: that we exist at all is the creative force.

Returning to celebrate what it is to exist, to feel, to conceptualize, to act, is how we recharge our creativity. When we stop emulating the inanimate and the automatons, we remember what it is to truly exist.

You don’t need to buy a book for this. You don’t need to pay for a class. Although, it doesn’t mean you have to do it alone. The celebration of life can be shared, creativity flooding out, allowing us to change with our moods — allowing us to have moods — and accepting it all. Just ensure that you can do this practice with others without activating the judgemental inner self. If you feel like you need to perform, don’t trap yourself with an audience and claim it’s to help you heal. It’s not; it’s to continue harming yourself.

When one is recharged again, no longer growing dim as you’re changed by this process, you will find that your creativity flows again for those projects that just weren’t getting done before. Not only that, you find that those projects change as you return to them, becoming more interesting, more vibrant, more purposeful, because you have something to give them now. You’ve become connected to what you’re doing and have something to create, instead of mindlessly producing for some supposedly essential goal.

What is truly essential?

There’s something very sad about being asked to disconnect from the many things that tell us we’re alive, all in the name of survival through the exchange of producing meaningless things or selling our time. It’s dehumanizing. De-being-izing.

How many times has the world told us to put aside how we feel, how we think, who we are, all in the name of some supposedly greater goal of… what? Doing a job that doesn’t actually need to get done? Providing a service that doesn’t really add value to community? Replicating a trinket that’s tossed in the trash, or creating content that is unsatisfyingly consumed, leaving people hungry and empty and seeking the very thing they’re being told is inappropriate, childish, immature.

We just want to enjoy our lives while we’re living them. And unfortunately, the twisted world out there that humanity has crafted doesn’t think that’s a good idea. (Seriously, why? What’s the big fucking deal with enjoying life at any age?) The world tells us our enjoyment needs to be regulated, kept to a slim “if you’re lucky and make enough you can be rewarded with…” all so we’ll work more for those who profit off of us.

Fuck it. Give yourself permission to enjoy the moment, every moment, without giving a fuck about societal expectations to turn you into an unfeeling, unmotivated, lackluster robot. You don’t have to be something to be happy. You don’t have to know what you need to become to finally be happy in this distorted world. We are all being, this very instant, and it’s exactly enough.

Don’t become a dead product of a sleeping, unaware society. Creativity helps us wake up and remember the pure beauty of simply existing. Where we are all worthy and deserving without needing to prove anything to anyone. Where terms like failure, wrong, and mistakes are nonsensical concepts. If you don’t know how to break free, the creative practice can help show you the way. And when you bring that into everything you do, you never have to fear being disconnected from yourself again.

Setting Boundaries With Expectations

Gaining Fresh Perspective

I was planning on checking in some days back. Had written the whole thing out, only to end up with another anaphylactic reaction and back to the ER. By the time I was out and looking at the submit button, the moment had passed.

So much keeps changing. The hardest thing to find is perspective right now, because of how this condition works. Anaphylactic reaction is your body basically killing itself to fight off whatever set off the reaction. It means that during those moments, the chemical cascade rushing through is defining everything.

Survival to the point of self destruction. It’s everything I know about living with PTSD since small, so maybe this was the illness that my brain is most willing to rationalize, possibly even set off because of such a difficult psyche. MCAS can be triggered through trauma, through other chronic illnesses too. There’s plenty to choose from.

Things keep changing so rapidly as I start to treat this condition in a way that’s actually working. The changes are so extreme on my body. I’ve regained circulation in my arms. My fingertips, which have been giving off electric shocks since the ER, now suddenly calmed. I regained circulation in my skin. The scratches and patches of scaly skin suddenly have color to them, like washes of sepia.

My executive functioning has changed completely — I can task switch with ease all of a sudden. I’m painting detailed work because my eyes aren’t bothering me anymore. My eyes aren’t bothering me anymore. The underlying condition is there, but it’s not being set off.

I’m not obsessing over anything — I just stop, now. It’s the most bizarre thing in the world to have found the kill switch that just wasn’t there for years.

And then I’ll eat the wrong thing, or smell the wrong scent, and it all unravels…

It’s life or death heart racing, throat swelling, mouth and stomach burning, chemical cascade of doom as all my lymph nodes swell up and my skin turns pale and papery and loses sensation.

It feels like zero to near death, just like that, except it’s not. I have no proper perspective on this illness because I have been in that stage I just describe practically 24-7, for years now, and it’s not near death. It was only near death when my tongue started swelling a little bit more and my chest didn’t want to open enough to breathe. (I mean, if you want to get technical and add in the adrenal insufficiency, it was already death…)

And that new stage where I’m not an anxiety riddled, neurotic, inflamed mess? I don’t know if that’s “zero”. I don’t know if that’s my default just forever out of reach. Or if it’s the stage where things are a little better than my previous default, and there’s something even better waiting.

I have no clue where I am in this process of healing, only that I’ve managed to get out of that previous default. And that my body is also now capable of experiencing that rushing toward not breathing stage. Two extremes that, with enough perspective, might actually be dots on top of each other on a chart for how much they are alike. I don’t know.

Remembering Me

What I do know is, as the inflammation lowers, and the chemicals that impact my neurology start to fade with fewer reactions, I am slowly coming back to me. I’ve found that a lot of the neurosis, anxiety, and inflexibility in living is coming from the immune response. In so many ways. There are levels to this.

Just the other night I was defining myself by the state I was in, remembering that version from before the really bad decade of illness, who would be manic every night, hyper-focused on a project to deal with the excess of agony being felt at an emotional level over absolutely nothing. Every night since I was a teenager living in a moldy basement, that’s the level of pain I had to endure, and I was suddenly feeling it all over again.

And then I realized, oh, mast cells are more active at night, which is why the meds are taken at bedtime. They have a circadian rhythm, which is probably why not only do I naturally fall asleep around dawn, but that habit of sleep came from following those disturbing, long nights of chemical distress. My bedtime is dawn; I need to take the meds at nightfall.

I cut out eating at night, to give the mast cells in the gut nothing to react to. And I make sure to avoid anything emotional or too energetic at night so the response can’t be triggered through stress. Sure enough, no mania, no physical/emotional agony over nothing. The problematic chemicals didn’t flow because the mast cells weren’t being triggered.

My mental distress is a response to physical illness, and good fucking luck trying to go through a pysch doctor to ever get to the solution for an immune disorder.

Self care has to come from a place of understanding the self. You can’t care for what you don’t understand. What this illness did to me removed me from my sense of self, and from my sense of being in my body. I have been burning my hands for weeks — possibly longer — and not knowing it. I only started noticing once I had gotten my inflammation down long enough for sensation to return to my hands. I thought I was “over” sensitive because everything was hurting. First the nerve pain and now suddenly I could see the rash on my hands and fingers, and everything felt like pain.

Because I was in pain.

The water temperature of our facet gets too hot, and I didn’t notice when rinsing the dishes and washing the cat plates multiple times a day. Every day. I had others test the temperature to confirm it wasn’t just a lack of perspective on my part — because that’s the thing: my perspective is warped by this illness. For so long.

Perspective is something always being built, adjusted by every change, big and small. It’s never final, never stagnant… except when our minds become small and shortsighted.

It’s like washes of paint, forever transforming something into clarity or revealing a lack of it, obscuring and removing, transforming and unveiling. And in there, somewhere, is the truth, but it will always be limited by the eyes looking and the mind perceiving. It just is.

This is the texture study I couldn’t start because of the neurosis. I was able to start working on it this week, around the time of the second anaphylactic emergency. How it started looks nothing like how it is now, and this moment — this snapshot — will be nothing of what its final form will be.

My eyes have been fucked for years, and I just started to come to terms with that, only to learn, hey, the eyes have mast cells in them too. The chemical cascade of the immune response was adding inflammation and strain, exhausting my eyes until the underlying Exotropia flared. But if that immune response isn’t happening, I don’t have a migraine 24-7 anymore. This week I finally remembered what a boring old headache feels like.

Writing what you know

Part of not getting back to writing is my acknowledgment that I can’t write people when I don’t feel like a person. I have been so out of touch with living for so long now, and after the last time the mold hit and I built the cleanroom, my brain changed drastically. So completely. I still haven’t recovered. I gained enough perspective this last week to remember more of what it was like to be whole, and to see how I am far from it.

My emotions are waking back up the same way the sensation in my hands did. I’m regaining memories — while also becoming aware that I keep forgetting what month it is, what I did yesterday, if I’m near the beginning or end of the month, etc. I can’t plot a timeline of what I’ve been through, and it’s scary to become so aware of a deficit I can’t even be sure isn’t new.

I want to believe the memory issues are a side effect of the bigger anaphylactic response, but I can’t know for sure. Not without more time.

I am returning to my body, and it is jolting. Remembering and navigating all these sensations and emotions is difficult, disorienting. And then adding all that intensity into the flares of the illness is, well, extra. Because it was bad enough being in this body when it couldn’t fully feel what was happening. Now it can feel more, and it’s something I need to learn to cope with.

Everything has changed

I am not driven to do anything but heal right now. I am not driven to prove I am alive by doing things, and that’s really the raw truth of what has been pushing me to get back to living while bombarded by the constant chemical cocktail of the anaphylactic immune response. I measured being alive by being able to get back to what I was doing, because I felt chronic illness was taking me away from that. Illness had interrupted my life, something that was holding me from doing what I love… and that was all I could define it as.

I didn’t measure it through feeling, because I wasn’t feeling much of anything. So there was never a rush to feel better physically once the nerve pain in the face stopped. I ignored my pain and discomfort; that is the fucking default to disability. Every moment is about enduring until you just stop looking at it, stop acknowledging it. And it’s shitty, and I can’t claim it’s the “wrong” way to go through chronic illness, because fuck, it got me through and it was all I could literally do when my nervous system couldn’t do anymore.

I wasn’t rushing to feel better emotionally, because it was the same damn thing. What was the point of having emotions over something completely beyond my ability to control? Emotions were better invested elsewhere, except mine had numbed so much, there was little to invest.

I don’t know if my nervous system was responding to the chronic chemicals, or trying to adapt to make things less painful. Either way, it resulted in my brain — the sharp teeth — deciding everything, driving everything. And when the logic part of the brain is coping, it’s with patterns, curiosity for distractions, games that become neurosis. Every thought is essential, and it won’t stop shouting those thoughts… to help me not feel what I was going through.

Boundaries with expectation

There is no point in having expectations when your perspective is a sliver wide. I have adapted down to this illness for the majority of my life — certainly since my teens — and I don’t know what being healthy is going to look like. I don’t know what I’m going to be able to handle to control this illness and prevent it from flaring up, while also living a full life. I just know that I’m not there yet. This silence I’ve been feeling lately is both full of so much possibility, and absolutely nothing at all, and I will not know who I can become until I am them.

For now, I need to take care of myself. Which means letting go of what I’ve already let go of this week when I wasn’t paying attention. I have no expectations of results on anything in regards to writing, coding — being. I have things I must do in regards to researching this illness and navigating diet changes and supplements, and everything else is just… being. Feeling. Remembering what it is like to be a living, breathing, empathetic being that feels.

I’m looking forward to it. Looking forward to remembering what it is I was writing that I couldn’t get back to because I had forgotten this part of existing. And that’s the thing; you can’t separate a creator from their experiences and expect them to be able to write something whole.

I was fighting this, knowing that I wasn’t ready to write because I couldn’t connect with the part of me that feels my writing. So the logical brain came in and said “fuck it, do it anyways.” Because that’s what the rational does. It talks about measurements of gains and loses. Money. It talks about no one being able to see through the facade. How there is value in going through the motions in the hopes of jump starting what isn’t flowing. There are so many reasons to just “do the thing” that I completely agree with. But creativity is a whole person experience. It requires the psyche to be there, adding important context. And mine just wasn’t showing up.

Be it physical malady or psychological side effect, I couldn’t connect and get into the state to understand what I was trying to write at the level it needed to be understood. Hence I couldn’t figure out how to edit it, because I didn’t know what exactly I was trying to say in the first place. So the neurosis stepped in, hoping to find a logical answer to the wrong problem.

Faking it doesn’t work, but it feels like doing something…

I wanted to be okay. And to prove I was okay, I wanted to do all the things I couldn’t do because illness kept getting in the way. So I wrapped everything about my ideals of getting better into getting back to writing, even as I promised myself I would be gentle with myself. But I wasn’t, because I couldn’t feel the pain I was inflicting to begin with.
I just wanted to be better so desperately, that I was forever looking at the goal I needed to reach to prove it. Never at myself. Never at the hurt, the illness, the pain of being left behind in life. The goal was far less painful to focus on.

Perspective frames everything

I can only understand this because the chemicals that were bombarding my body are doing it less now. There’s no point in me beating myself up over doing the only thing my brain chemistry would allow. And now that it’s shifted, it’s still the same lesson. There’s no point getting upset that I can’t hold onto the motivation to get back to writing to the point of self destruction. I’m not that person any longer (until another flare, I suppose.)

Things will happen in the time they take to happen, and it’s exactly enough. I feel so much pity for that other version of me who was desperately trying to prove everything was okay by neurotically going through the motions, unable to get out of the trap. Unable to feel how nothing was okay, and that trying harder at what wasn’t working wasn’t ever going to solve it.

Everything has shifted drastically, from health to perspective these last weeks, and I don’t know where it’s going to balance out. But I remember myself more, am more in this form, in this life, and I am better for it. The suffocating feeling that has been following me for so long… to realize that was real, that the anxiety and feelings of dread — like death was going to slam down at any moment — was part of the chemical cascade that goes along with your mast cells over reacting all the time… There’s peace in understanding that. More so once I was able to pull the reactions back more through eliminating histamines. Even as I observe the smallest things setting off the biggest reactions in this body, I still have that feeling of peace from this fresh perspective.

I have lost a lot of time to this illness. I’m probably going to continue to lose time to this illness. But trying to solve that by breaking myself — doing more and getting nowhere — doesn’t feel like a viable option anymore. I can feel things again; I want to enjoy the experience of living. I want this change to sink in and continue softening these straining muscles and anxious, rigid expectations until it all dissolves into soft foam. I’m tired of the only thing I feel being pain and anxiety and the forever hovering exhaustion. It’s time to experience more.

My allergic responses have actually managed to get more problematic

It’s been an interesting week. I was focused on the OCD, examining all the things I do, and trying to see what was working and why — like putting my thoughts through the language section of my brain to not reread the last post I did a million times seemed to have worked. It’s not just becoming aware of it; I need to either verbalize or write it down to really cement it in my head. Good.

I was also working with art — I’m arting! <3 The goal being to find a way to compromise with my neurotic, perfectionist default to create something. And yes, I did, I made a pretty I just adore. Used lots of paint splatters, acrylic ink, and acrylic paint pens, all on watercolor paper so I could really play around without destroying anything. It was a good time making something that I had no idea what it was going to be. It’s like a micro-scape of random, and I love it.

But I made this in response to the piece I couldn’t touch. I had sketched out a very fine detailed, lovely little bit of texture I want to bring to life, but I saw the trap once I was looking at my watercolors. Everything I own is too… refined. Too neat. They were like markers instead of watercolors, and I knew that once my brain saw the path to photorealism, that’s where it was going to force me to go. And I didn’t want that level of neurosis. I don’t want to be trapped, hating what I’m making because it’s not fitting some ideal my distressful brain has defined out of nowhere. Instead of just, I dunno, discovering something new and different and freeing on the page.

I still don’t know how to compromise with it. It’s avoidance. I see the trap is there, and I don’t know how to walk a safe path with it yet. But I’m going to have to try, all while acknowledging all the dangers. And eventually, it’s going to happen. It’s going to become normal.

 

Allergy attack

Right before I finished this little painting, I ended up in the ER. It’s a testament to me being completely unaware of my body when I’m hyperfocused on something, and also just how I’ve normalized my allergic reactions. I’m used to my pulse racing — it’s been happening constantly for over a week now. I ate something I shouldn’t have, wasn’t sure and blamed it on environmental stuff, and the day before last, I had a big helping of the thing.

When I took liquid benadryl that night and my face immediately broke out into scaly patches, I thought I was reacting to the dye free, everything free medicine, not the thing I had eaten that day. And the next day, when my hands were shaking at my allergists, and my brain was so damn slow, and I was so tired I wasn’t sure if I was going to make the drive home, I blamed it on the lack of sleep for nights on end because my cat’s blood glucose had been dropping into dangerous lows. Blamed it on the Benadryl — maybe I’m just one of those people who get bad reactions to everything.

Blamed it on forgetting my ADHD meds that usually wake me up shortly after — and they did, they woke me up when I got home and went back to painting. But my hands were still shaking, and my pulse was hovering in the mid 120’s and, although annoying, the tremor was a cool effect with the paint pens, so whatever. I’ve had a racing pulse before. At least I’m not in screaming pain.

When everything becomes compared to the intensity of that face nerve pain, do I even know what a reasonable perspective to pain is anymore? My tongue has been burning after eating for years now, and as long as it’s not screaming face pain, it doesn’t need my attention.

It wasn’t until my partner got home and pulled me away from arting, that I caught my reflection and paused. Something was off. I checked my tongue and it was the biggest it had ever been — and granted, it’s already too big. A year ago it swelled up and never went back down, and I assumed, I dunno, the pituitary cysts had fucked with the growth hormone or something for a second, then never reverted.

Last night it wasn’t just swollen, but oddly smooth. And I started to notice that my throat felt tight. And not much later, my chest started heaving at random intervals like I had forgotten to breathe — but I was breathing. It was like I needed a deep breath because my normal breaths weren’t doing anything.

My EpiPen was expired. I got a set in 2018, and had felt ridiculous at the time. A bee had stung me and it had welted up, and the welt remained for months until finally fading. But it wasn’t life or death — I’ve had allergies for decades now; it has never been life or death. Why would it change now?

Still, I made myself go to the ER, having to convince my partner that no, it’s actually a good reason, stop asking google over me (my fuck, I wish I was joking). By the time we got there, my chest felt tight, not wanting to open to let air in. But not deathly tight, not panic inducing tight. Just a promise in there that shit was going to go sideways pretty soon.

It was interesting, partially cuz through the whole thing I was still wondering if I was actually having an allergic reaction. Wasn’t this supposed to be the worst thing ever? This was slow, confusing, and certainly no pain. More numb than pain. Maybe I was just overreacting. Nope, I was under reacting. I have normalized too much with these allergies to know what’s going to kill me.

First time getting a shot of epinephrine — that felt like something. Thought I was going to shake away from shivers, teeth rattling — I have no clue why everything got so cold from it, but then suddenly heat roared in and I could feel my arms again, which had gone numb when they were looking for veins. And then it was fine. Like it didn’t happen. My pulse was flying, but not as bad as when I didn’t have the epinephrine, and I was toasty warm, alert, and ready to leave. After being politely reprimanded for not renewing my EpiPen prescription and using it.

5 years I didn’t need the damn thing. I honestly never thought it would be needed.

A Rambling Theory

So… why now? Why big? I’ve been taking more anti-histamines, not less. I’ve been having less allergic reactions as I solved the biggest environmental problem: ammonia from the litter box. Why would I have such a big reaction now?

At first, I would have said my immune system must be feeling stronger from having a rest, and therefore reacting with more power. After today, I have another theory to go with that — and it’s just a theory. I’m not in medicine, not a scientist. Just like to ponder.

So I have adrenal insufficiency, which means when my body goes through stress, it can’t produce cortisol to protect me as part of a healthy stress response. But if cortisol gets too low, you can die, so the body has another stress chemical to help keep the heart pumping when cortisol is low: adrenaline.

Now cortisol is eaten up by stress — stress ranging from chronic low grade stuff, colds, physical injury, emotional reactions, and yes, allergic reactions. So if you’re someone like me, whose cortisol isn’t going to increase no matter how much adrenaline is rushing through the veins — I need to take meds to get cortisol — that adrenaline is going to keep flowing, making the heart pound, desperately trying to get the body to stay alive. But I’m on a schedule of cortisol, and there isn’t much room in that schedule for chronic allergic reactions, so I tend to ignore it and take my meds when I’m supposed to. Because my doctor gets pissed if I take too much. It can lower immunity (there’s some sort of irony in here…)

Anyways, the big point to all this is, another name for adrenaline is EPINEPHRINE.

Yup, every time my heart was pounding over the mere scent of ammonia, my body was being flooded with the anti-anaphylactic chemical they inject straight out of an EpiPen. It was daily, over years. I can’t remember a time not having cats where their litterbox didn’t make me ill. And now, suddenly the last couple weeks, it stops because we finally found a system that works to keep the scent contained. I was no longer being flooded with adrenaline on a daily basis.

When this latest allergic response hit, yeah, my pulse was speeding, my adrenaline was flowing, but it wasn’t enough. It was a week of eating something my body was reacting to that had cleared my system, and I just reintroduced it with nothing to contain it. My pulse got better about an hour after eating — it wasn’t doing a constant reaction even though ingested. No, my pulse only does that for environmental stuff.

The pulse only started up again with the Benadryl, a sometimes side effect of Benadryl being rapid pulse. It was like the Benadryl had woken up the reaction (or I really am allergic to it. I’m not touching it until I know for sure. I’ve cut off any possible suspect for now.) My immune system had had time to heal, and I had eaten something very stupid, and no longer had the daily flood of adrenaline to help combat it the way it did before.

At least, that’s my theory. It sounds like a good story, but who really knows. Maybe the adrenaline the body produces really can’t compete with the injectable stuff, and it’s all flawed from the start.

New med

They put me on Singular for now to try to stabalize the mast cell response, and it seems to be going well. My pulse finally calmed (until I forgot my hydrocortisone and started thinking about the adrenaline connection.) But taking the HC calmed it down again… then the fever showed up. My biggest concern is that, as good as Singular can be for this problem, the most dangerous side effect is psychosis. So, you know, I might have somebody check anything before I post for a while, just in case I’m losing my shit.

Adrenal insufficiency has dangers of psychosis, but the little I felt of that is, I’m fairly certain, nothing comparable to a drug induced psychosis. So here’s hoping I’m not the always gets the worst side effects person I usually am on this particular one.

As frustrating as needing to go to the ER was (I suppose, the frustration of my allergies hitting a going to kill me level), it was also, weirdly, validating. Because I’ve been to how many doctors? How many ERs? Mostly for my pulse flying while exposed to an allergen, and then being perfectly normal once in the wonderfully sterile, perfectly filtered air of the hospital. Same with my brain just checking out with inflammation, body slowing down to a crawl, losing so much of my life, and then hey, better environment, no more inflammation, you’re fine and full of shit. Where the face pain was written off as tooth pain, and me treated like someone looking for pain meds instead of looking for the screaming pain to stop. Medical gaslighting sucks, but hey, all that cured by me being so oblivious, I missed I was having a serious allergic reaction to the most delicious, keto friendly chocolate hazelnut butter spread ever.

I’m pissed that most healthy things are high histamine. Like, weight management is tough enough when you have immune issues, without adding on that the healthy stuff is going to kill me a little faster, somehow. I have to be so damn perfect with what goes into or around my body as a result of these allergies, and it only gets more limiting. It’s given me multiple eating disorders.

Fasting is so easy — and feels so safe — compared to having overwhelming decision fatigue, guilt and possibly horrible consequences by eating. And when everything you eat slows you down anyways, makes you dumb, digestion refuses to work, it just reinforces it. I can call it intermittent fasting to sound trendy and smart, but it’s just keeping the difficulty of digestion to a short amount of hours, and totally not getting enough calories (cuz people bullshit about eating enough while intermittent fasting. It takes time to eat that many calories, especially with “healthy” food.)

Anyways, I’m actually quite happy about things. It’s nice to art, nice to see a way through with this illness. Cuz hey, the ER doctor understood immediately; my mast cells are unstable and over reacting. I didn’t once bring it up. So if a visibly anaphylactic attack was what it was going to take to be noticed as actually having allergies when I don’t get a drippy nose or hives, but instead get zombie skin, racing pulse, low fever (writing this with a low fever right now) neurological issues, gut issues, and low blood pressure, then glad it finally happened so I can get the understanding and tools to prevent it happening again.

I really hope it doesn’t happen again. I had a bunch of different anti-histamine meds in me yesterday, yet still blew up. Maybe histamines really aren’t the issue for me (the rare hives thing.) Maybe allergies act in different ways and I’ve been unknowingly focused on the wrong way for me. No clue.

I’m tired of having to know so many things and rarely having it be useful to my situation. But maybe it’ll help someone else, so there’s that.

If you have allergies that don’t act like normal allergies, it could be MCAS, which is a blood disorder (so I’m told), and therefore will have the look of allergies as your immune system is the thing disordered, but won’t behave or be solved the same way. It’s not curable, but it is treatable, and that treatment can be everything.

I have hope because I was able to put my Hashimoto’s Thyroiditis into remission, and the meds work to supplement the damage done. Allergy shots worked and I’m no longer allergic to cats, even though dust mites and mold are currently still a nightmare. The immune system can be retrained, redirected, repaired. It’s just identifying where the problems really are happening to give yourself the best chance.

When you’re someone who would start a long ass game over if they realized they missed something they could only get earlier on, it can be hard to accept so many imperfections in living a life. I want things to follow logic, but that’s not the way life works. Life is chaos, and we have these stupid logic brains in our head insisting we can organize it, that it has to fit, has to make sense. But that’s just the unique madness of being human, and even in that, people really struggle to see the disconnect.

We build imperfect solutions to an imperfect existence, because it’s the best we got as self-aware beings that are destined to die. It’s not all curable. The right thing isn’t always the right answer. Repeating something over and over again does not, actually, make it true, no matter how persistent and willful. It just means some people need the lie to keep going, for whatever reason, because hey, imperfect AF and completely unaware of it.

I’m alive because I take my cortisol every day. I’m aging and wearing down because that’s what happens when you’re not dead yet; you age — not necessarily mature, but aging definitely happens. And there’s only so much one can do about it. I do my best to be healthy to contain my allergies, and that food is destructive to my immune system. So I guess it’s time to enjoy some junk food without the guilt?

Guilt, the true spice of life…

This fever is not budging, and this is going full ramble. I swear, if I’ve become allergic to the fever reducers at this point… >_>

It’s probably going to at least be a week to get through the full effects of this attack. It was ingested, and my body is not interested in eating to help expel it, and I’m sure it’s causing havoc on my gut. And there’s only so many meds I can take… cuz I don’t know if those meds that I were on the same time as I ate the thing, might actually be the culprit or contributing to the problem. There’s a worry that my system will over target, as it does, and knock out all my immune helpers. Dunno. Can’t predict, only overthink…