Category: Random Author Babble

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

October 26, 2024

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

July 17, 2024

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

July 14, 2024

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.



New MCAS Meds!

May 15, 2024

Hey, peeps, just wanted to check in and give a mini life update and, you know, intentions of how it’s going to fit into writing in the future.

One of my docs started me out on a med called cromolyn sodium because of persistent GI issues. We had figured out I have hypermobility a month or so ago, which as a lifelong, genetic thing, was likely the source of a lot of GI issues, especially the super slow gut motility. I was on about it because it seems to be tightly linked to the return of the chronic fatigue that’s been taking over my life since the start of 2024. Between trying to balance the two issues, this new med was added in, introduced to me a bit like an H2 antihistamine that would help my gut. It is so much more than an antihistamine (because, for one, it’s not an antihistamine at all). It’s a mast cell stabilizer.

I’d been put on a natural mast cell stabilizer (Quercetin) to see how it would go, along with a ton of antihistamines for H1 and H2, but nothing really toted for MCAS. Partially because of the big question of if insurance will cover it. For whatever reason, it’s pricey business to treat MCAS, even though I don’t believe any of the treatments are particularly new (but I don’t want to get into the dystopia of the US health insurance situation). Insurance is currently paying for this dose at 3 times a day (4 times would be ideal, tho). Things were getting increasingly better the last months since adding in the quercetin and trying some remedies (but not cures) to the whole gut motility issues. But starting this sodium cromolyn stuff… It’s beyond any expectations I’ve had, and I’m really still coming to terms with the changes considering it’s only been a handful of days.

My stomach is no longer this background distress of boiling — something that has been with me for so long, I only noticed it was happening when the med soothed it away. I’m no longer full of extreme anxiety, another background issue that is so hard to quantify after so long. I mean, I was diagnosed with generalized anxiety back when I was diagnosed with PTSD in my late 20’s, and those were conditions with symptoms I first remember noticing in early tweens. Anxiety is a part of my base wiring at this point, and to have it suddenly stop has been, well, life altering. My mind is so silent. There isn’t a constant monologue or song or chaos of internal noise (which I now realize must have been chemicals being sent out from chronically degranulating mast cells). It is such a deep peace, that after so much noise it almost feels spiritual. Like fresh, cooling snow engulfing a brain on fire for years.

I can focus, for the most part, because my brain is so still. I can focus on a screen — and my eyes seem to be doing okay with screenwork, at the moment. My executive functions aren’t at 100% atm, tho, and the chronic fatigue absolutely took over shortly after starting this new med. If my guess is correct, the MCAS reaction is a “stimulant” to my body, and by now turning it off at a more complete level (I’m hoping one day for remission!) I’m not getting that jolt to my system. My pulse has literally slowed down to everyone else’s normal when starting this new med. It’s no longer racing randomly in the 100-130 range while barely doing anything. So my guess is I’m not getting that same norepinephrine boost to dopamine conversion that a racing heart was giving me, and I’m going to need to adjust my ADHD meds (which double as my chronic fatigue meds). But after that…

Peeps, hope is damn hard for me. The last years I’ve been spending all my time trying to learn acceptance. Acceptance of limits, of a complete lack of control with health, acceptance of not knowing what may happen… Hope was really harmful to me at times because I was using it to ignore reality and the consequences I was gaining from pushing my body when it couldn’t do the things I was determined to do. Hope was the thing that allowed me to deny my disability and not seek help when needed, etc, because surely, eventually, I was going to figure this out. I had no idea how to pace myself with hope, because there was no acceptance of reality to balance out that hope, and it was self destructive. I can’t fully remember the last proper newsletter I sent out, but that it was years ago, and it was full of hope as I explained why I was going to destroy myself and my eyes on writing because what was the point of doing nothing in the face of chronic illness? Bluntly, I’m not good at being chronically ill, while I’ve been chronically ill for many years now.

So, when I talk about my hope to get back to writing in this context, now, after having symptoms alleviate that I’ve been dealing with for years before I even understood the MCAS was likely active and impacting me, after spending the most recent months to years seeking that balance and acceptance with reality, I think that it’s more measured. More realistic. There are a lot of things in life I want to catch up on, writing being one of them.

I don’t suspect that I will be able to keep the pace I did before — because when I started writing, it was basically all I could do. My arms and head were too heavy for my body, and the fatigue and fevers kept me bed-bound, and all there was was a laptop and my desire to escape the reality of what my body was going through by writing fun, dark fantasies. It was my fuel when nothing else was working, and it kept me going — but as such, it became an intensely unbalanced relationship with my time and energy. My answer was to break from it completely (because what is balance?). I’m going to have to find a way to write and not have it take over everything, which, with my mind quieting, feels far more achievable. My ocd isn’t exactly gone, per-say, but it’s not active or demanding me to act. I’m not glued to a screen (even though focused on a screen).

It’s going to be a learning curve, tbh, because it’s going to be brand new to me and this new brain chemistry of mine. There’s the real possibility that this med might stop working, or the MCAS might flare and become stronger than the med at times, and I’ll have to learn to adapt to that and practice a different level of self care when it comes. But for now, yeah, I’ve been thinking about writing for the first time in ages. I’ve got a lot of free time (cuz still disabled and chronically ill) and the fatigue has put the computer right in front of me with a brain no longer on fire. I’m curious to see where this will lead.

I’m keeping this informal, because I’m not ready yet. It’s only been 2 full days since starting this med, and the first day I tempted my heat sensitivity out in 80 degree temps and lost, getting a fever for pushing things. My fatigue is super strong, and I don’t know if I want to wrestle with taking a ton of notes on my old books right now to start writing a new episode. I just want to enjoy the stillness for a bit and see if this change is going to take root and stay. And from there, I’ll get to learn what this new version of me is going to want out of life beyond waiting to get better.

Wishing you all the best! ^.^ 

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

April 16, 2024

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.

Mental Health is a Universal Right

October 10, 2023

That’s the theme of this year’s World Mental Health Awareness Day. As much as mental health tends to be referred to as diagnosis and something that comes from within, I’m someone who has a combination of situations that reveals it’s more complicated, and absolutely universal. So, while the world is on fire once again, I want to talk about external factors of mental health.

We didn’t evolve to survive the modern world. Our technology has surpassed our evolutionary capabilities. And with the ability to industrialize and “scale up” every model we create, we not only didn’t evolve to survive this current world, no one is designing it. There are no intentions beyond a few as to how they want the world to be (usually driven by how much money and influence they want to gain) and the many — the majority — aren’t represented in that vision. There is no grand plan, no puzzle pieces being fit together to craft the ideal picture. It’s just humanity doing what it wants, sometimes with limits, sometimes without. And we all have to live with the consequences, just in varying degrees of comfort.

Our civilization is chaos, and we didn’t evolve to survive it. But we’re here. Adapting.

Some can turn to the Internet for connection, or television for distraction, while these same elements can bombard through marketing and algorithm to sell people bad mental health so that they will “engage” with “content”. This can change who they are in the world as they’re traumatized by shock and awe experiments news media networks use to ensure the traumatized come back to forever watch for the next attack. Their motivations can be changed as someone stops thinking about personal dreams and instead starts fearing every potential minefield of being an adult responsible for themselves and others in an unstable world while feeling like they have no power. The Internet in the palm of one’s hand means there’s no escape if you’re addicted to video games, or raging about topics online, or to checking your finances or news, catastrophizing about fears, or needing external validation as communities deteriorate while people spend most of their hours at work, not at home or investing in their neighborhoods.

Humanity didn’t evolve to the culture of stress it is contributing to as every real horror of the globe and imagined potential horror is pumped into their screens 24-7. Our empathy mirror is forced to go through the motions again and again, only ever seeing the horrors and never the good, until some just burn out completely and they’re changed. Hardened, colder, yet happy to survive… even as happiness feels less.

Our brains weren’t meant to have so many images of vast wealth and success staring back at us from so many screens, like these mansions are just the house over instead of behind gated acres miles away. We weren’t meant to have to decipher what is a visual lie 24-7, an illusion of wealth and stability as influencers sell us a lifestyle they can’t afford while seeking pseudo relationships with the working class to pay for it. When the majority of people live in credit card debt and many paycheck to paycheck, no mirror on their screens is there to let them know they didn’t fail. Poverty isn’t an individual failure; their government chose poverty for many so a few could be ultra rich.

Humanity lacks self awareness of the damage it creates externally and internally, of the norms that we participate in that are damaging. We fail to see our expectations don’t match reality because a false reality has be sold to us from so many, in every direction, and at some point we adopt the lie and only see that as truth. There are so many students left with horrendous debt for an education that slyly failed to inform them that there wasn’t a job waiting for their newly earned skills, and next year there will be more, and more, because out education system wasn’t designed to be a job placement system, no matter how much colleges will claim otherwise to fill their dorms.

We fail to see the value of our time in this existence as we’re taken from home and installed as labor for the profit of one, simply for the right to live. We haven’t evolved to this; we have adapted down to damaging conditions, failing to see the extent of what we’re doing even as the one planet we can survive on falters.

I took out the word “Human” in “Mental Health is a Universal Human Right” because I think it’s important to realize that it’s not just about us. Humanity sees everything through its filter, but in taking over the responsibility of transforming this globe full of diverse life, we have tried to release our accountability, and I think that’s bullshit. I, from a place of very little power, still hold myself accountable for my impact, even if the current way of living doesn’t give me many options on how to change it. And I can do that, because I work on my mental health most days.

It’s my job. I gained tools to do it when I gained enough self awareness to understand that this is my job: taking care of me so that I can be better for everyone in my life. I’m not allowed to catastrophize anymore. Not allowed to feed my fears and put myself down and talk shit about how I can’t be something that I literally cannot be, because I am exactly who I am. Always. Even when it’s different the next moment; that’s the only me I can be in the moment. It’s pretty hard to fuck that up.

We are all exactly as much and as little as we can be in the moment. Self awareness gives us that grace during the chaos. And it’s a lot of chaos out there, especially when you’re staring at a screen being exposed to far more than anyone with the base senses of a human would ever be exposed to without technology.

So, for mental health day (and any day you need a mental health fix), I recommend checking out of screens for a mental health check in. See the world around you. Ground. Feel connected instead of the disconnect sold to us. Find you in the chaos and love. 💕

If you can’t. If you find yourself trying, but your brain fills with all these reasons why you can’t, stop and listen. Write them down and examine those reasons. Some might be very good reasons, and that’s okay. Even if you can’t, you can still start gaining self awareness by just questioning if it’s true. If you really won’t survive turning off the screen for 24 hours. The more self awareness gained, the more you can start to see who is pulling you, and their intentions of how they want to use you on those screens. How you’ve absorbed their message as your own without even realizing it. And how it’s okay to have your own intentions for your time, for your thoughts. It’s okay to be you in your head. The only one judging is you.

I had to go through a lot of PTSD therapy to reach where I am today, and I’m far from amazingly resilient. I just realized that what I was being sold as resilient — being able to hold an entire globe’s problems in my nervous system and cope — was ridiculously unrealistic. We didn’t evolve to be able to do that, so why do we hold ourselves to this standard that the perfect version of ourselves can do that? Nonsense.

Mindfulness is really helpful, just avoid the cults (cuz of course there are cults in the mindfulness sphere.) CBT therapy can also be helpful, but it might not give you as much insight into yourself as just asking those questions and writing down the answers when you feel stuck in a loop, unable to break free from a damaging habit or thought. Self awareness is a relationship with the self, not just an awareness. Understanding is where we start, even as we’re all in a relationship with ourselves, aware or not. The better the relationship, the better our mental health gets because we stop blaming ourselves for things that were never in our control in the first place.

Good luck today, and every day, peeps. ^.^

June 22 2023

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.

My allergic responses have actually managed to get more problematic

May 20, 2023

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…

Lowering Histamines and Looking For Balance

May 17, 2023

So, I was able to get connected to a MCAS specialist in my area, but it’s going to be months to actually have an appointment. And if I’m going by the timeline of what it took for them to properly figure out and treat my adrenal insufficiency, the initial appointment will only be an assessment, and it will take more months of waiting for a diagnosis, treatment plan, figuring out what works, etc. So what to do while waiting…?

I have a bad habit of self treatment, but really, considering the symptoms I’ve been battling, it was either suffer indefinitely while no one knew what to do, or try and help myself. Right now, after some research, I’m trying a few things to help me deal with the symptoms — and I stress symptoms because I don’t truly know if it’s MCAS or not. It’s a good fit, but that doesn’t mean it’s the answer. It just means it looks good on paper until proper testing can be done.

The thing is, treating the symptoms is basically treating the array of allergic responses my body is going through daily. Some I didn’t even recognize as allergies because they’ve just been there so long, my normal. This last week has been a fresh hell. I had foolishly gone through one of those big tubs of coconut yogurt, thinking that it had been dairy alone that had made yogurt intolerable to me. Only to end up with burning stomach acid and a burning tongue and mouth since. It’s just this constant dragon breath, and with it, bouts of severe agitation.

For whatever reason, when my gut goes bad, everything goes bad. If I’m getting any sensory data from my gut, it feels like insanity, twitching, agitated madness on a sensory level I can’t really explain — and it’s not something I would want anyone to experience to understand. Outside of the screaming face pain, this has been my most alarming issue. The fatigue, cognitive drops and inability to hold my head up for hours on end might have felt like I was dying, but the agitation makes you want to die to stop it. It’s just not a thing a body should experience, ever.

This, obviously, wears on the psyche the longer it goes on. And because it seems to be connected to the gut, it also has a huge impact on mood. In the same way the gut creates the majority of our neurotransmitters (aka, happy chemicals that keep one functioning), when your gut is at war, inflamed, in pain, and potentially experiencing a die off of one type of bacteria with the introduction of a new one, toxins are released and there can be extra or less neurotransmitters as everything is unbalanced. The gut is kind of like a train station in that way, systematized to distribute what shows up to the proper destinations. But it has terrible security, and the bad can flow with the good, inflaming everything along the way and throwing it all off, including the gut-brain axis.

It’s been difficult.

I’m starting up H2 blockers again, aka, pepcid ac, to help deal with the constant stomach acid. Looking at liquid Benadryl for the burning mouth. And I’m trying a histamine-blocking probiotic for the first time that I’m really hopeful about.

Probiotics have been intolerable to me for years now. I used to think I had gotten an allergy to them because I would always take them when my immune system was targeting everything, usually after months of antibiotics. I had no idea that probiotics could add histamines into the system.

I don’t know why I don’t usually think of histamines when I think of allergies. They’ve been on my radar for some time, but I never really thought I was a histamine problem, partially because a lot of the gut symptoms I had experienced in the past, I had solved — or had seemed to solve. Histamines was a hive thing, right? Everyone knows that… but no, what I thought I knew about a lot of things is really just only pieces of a larger image.

This week, after that yogurt had a chance to set in and build some happy, histamine filled probiotics in my gut, I became aware of histamines doing their thing without allergies being involved. And yes, through hives (because hives were the only association I have with histamines.)

They’re just one offs, here and there, nothing tragic or particularly interesting. But when I ate an almond filled chocolate and had a hive immediately form on my upper lip, it was enough to make me stop everything and figure out wtf was happening. Which was when I learned about probiotics usually having histamine contributing bacteria that can make histamine intolerance worse. And as my skin itched, stomach burned, and I was overwhelmed with the frustrating anxiety that comes with my pulse racing and blood pressure dropping over having eaten the wrong thing without knowing it was the wrong thing, I knew I had to deal with it. Because at this point, any food was setting me off. Whatever my histamine tolerance was in the past, the damn yogurt had tipped the scales, and my gut was having none of it.

I am… better??? now. I still need to take the pepcid ac, and I know when it’s wearing off because that heartburn is right there, waiting to turn my insides into fire without something to stop it. I’m on day 3 of the histamine blocking probiotics, and I’m not sure if they’re helping, or if I’m just desperate so I think they’re helping. It’s difficult, because eating is so impossible right now that any probiotic is failing to get a food source that’s going to help it grow and sustain. And it is the war stage as these new probiotics come in to take out the histamine producing ones, meaning die off, toxins. Agitation.

Dealing with neurosis

I’m really talking about this because I’m thinking about how my OCD tendencies kind of fuck off when my health is good, and flare up when my allergies and/or gut are bad. Definitely when my gut is bad — it was a lifetime of having a bad gut before I finally figured some of this out. I don’t understand how I got through school, usually hunched over with stomach cramps and full of agitation for years while trying to focus on work. It was misery, and it was my “normal”, the same way as obsessively counting and adding numbers up in my head and bringing them down to a single digit — until it was the *right* digit — had been my normal. It was another thing I didn’t know how to ask for help with, because I was surviving and thought that was enough. Because trauma.

Anyways… (it’s always fucking trauma >_>), I’ve been trying to think of how I can edit my work without triggering the obsessive pattern compulsions my brain will default into as it turns everything to shit. I had thought I had a plan with going minimalistic, but I never tried it, partially because I knew the moment I had decided on it, it was a flawed solution. Going minimalistic would require me to create a rigid structure of writing I would then force everything to comply with. It would require hours of work deciding what was right and what would be cut, and would need to fit into a very restrained word count — bad fucking idea.

Of course, my patternistic brain wanted this plan. It feeds its obsessive nature, making my life harder while it plays its meaningless, exhausting games. It even gave some great justifications for the game — less words means less time writing, right? Not when I’m spending hours trying to turn a short story into a haiku. But it would give my brain something distinct to focus on so it wouldn’t get overwhelmed with choices, right? Also a lie, because it would become so systematic in its thinking about writing, that it would need to question every word to ensure if it belonged or not.

The only solution is to minimize what I choose to edit, and the time I allow myself to do the task. It needs to be in small batches so that I’m not allowed to hyperfocus and get lost in the task. It needs to be broken up with other things happening during my day so that I can’t default over and over into doing the one task.

Like, fuck, I have been coding every single day for weeks now and it is war to get me to not just open up my script and work on it as a default. I have to force myself to turn on the tv so that it prevents full immersion into my work. I have to stop and give in to these moments where I write something — anything — so I’m doing something beyond the same pattern of activity again and again. And it’s still going to be a war to get my thinking to change when I finish this code and get back to writing… It’s going to be like killing off bad bacteria and growing fresh, healthy stuff, except with my brain, every new activity can just grow those grooves too deep, becoming a pattern, a system of thought that wants to continue itself because it’s just so calming to always know what you’re supposed to do and how to do it…

 

Art as transference problem solving

I’ve been arting. It’s an experiment. A different medium to try and see if I can tackle a project without triggering the obsessiveness. I had to stop after I created the initial pencil outline because I could see the problem with the mediums I was using. They were too clean, too perfect, and in that was the promise that if I were to work with paints that could dry perfectly even, without any variation, I would automatically lean into that and obsessively try to make the image look photorealistic. I can’t help it. If the ability is there, that is where my brain is going to take me, to that mountain. I have to block the path completely.

Like a couple of days ago, I was able to make myself paint lines with my left hand, to ensure it was messy, ensure it couldn’t be perfect, and just let go, and that was a win. I mean, I was still looking for the pattern that would allow me to step away and say it was done, complete, and that had to be found to break free… But it wasn’t as bad as being on the computer for days, killing my eyes because blinking isn’t allowed, unable to pull away until everything is perfect.

I don’t know. Maybe this is everyone’s normal when it comes to making things, and for some reason, it’s a problem in me. Certain tasks absolutely require the ability to focus for long stretches. They require a mind that is capable of making the task interesting to avoid the boredom of doing the same thing, day in and day out. I mean, why are humans so content with sitting in front of a screen all day without something to reinforce such a damn dull, meaningless activity? From the outside, we all look mad, staring at screens, maybe typing, maybe bursting into laughter or anger — for HOURS. Fucking hours doing absolutely nothing as we convince ourselves it’s important. So maybe the kind of crazy required to get a human to sit their ass down and do nothing, yet manage to feel like they did something important, is just always going to be crazy feeling, no matter what.

Or because it’s so easy for it to become a problem as I obsess over getting everything perfect (or just patternistic to shut my brain up) I can’t navigate these simple things the same way as others can. It’s all booby-trapped right now, where my joy of getting lost in a project can lead to insomnia and forgetting to eat, refusing to do much of anything beyond hyperfocusing, and hating everything once it’s done because I have to let go of the pattern and be a person again.

I can do amazing fucking things when I’m in my creative state… but I can’t bounce back from the consequences the same way I could before. And I see how selfish it was to just check out of the world and out of my relationships to hide away in the discovery of creation. I can’t get that time back, those connections back. It’s something that requires attention, time and a full desire to want to grow with people. And I can’t do that when I’m lost in my head making things. I have to be able to find a balance, one that leaves room for life, and for self care, the other major thing I neglect when I’m lost in my brain making a world.

All of this to say I have nothing to show for my work on this problem — beyond a squiggly flower — but that I am working on it. The problem has been driving everything for so long, so solutions aren’t readily available until I’m truly looking at the scale of the problem, but I’m doing the work, looking for escape from these self made bars.

Will I read this page repeatedly, editing all the mistakes I missed, and then read again, and again, and again, even though I have a headache and my eyes are extra dry from the antihistamines, but my brain insists that it has to have the right flow, has to say things the right way, and won’t let me stop until that’s been achieved? I really fucking hope not.

May 7 2023

May 7, 2023

When Rest Looks Like Failure

Spent the day fighting my brain, just trying to unwind a complex script that suddenly became so much more complex once adding in the other stories to the database. And I knew it was as simple as tagging what needed to be tagged and following those strings and just, you know, holding it in my head long enough to get the thing done. But it wasn’t working. My brain couldn’t focus, couldn’t focus, couldn’t focus, until suddenly, dawn chirping through the window, my brain just clicked, and it was tick, tick, done.

And this is my frustration with my current situation. I know the ability is there, but it’s always out of reach until it’s not. And a part of me sees the waste of time and energy trying to reach something that isn’t going to be attainable without 1) battle or 2) when my brain is working. And I don’t get to choose that second one; it’s completely out of my control. But battle… battle feels like control when shit is going down. It feels like doing something when I can’t do anything about this situation. I want to battle because I want the lie that I am participating in my ability to function.

But it’s still just a lie.

There are factors to this, layers of justification and rationalization and what needs to be done when living in the world, and they’re not unimportant. But it boils down to this: What does giving up truly look like when you know you could be putting all your time and energy into something, but you are only ever going to get the same results?

Insanity is doing the same thing again and again expecting different results. But proving to yourself — proving to the image you hold in your head of what is required as a sacrifice to prove you’re giving your all? The last ten years have been a level of exhaustion and pain that has set my level of what “proves” I’m trying. And that was with untreated adrenal insufficiency.

I hold myself to these standards that demand something that I can’t reach, and that I can’t ever give up on, and even if I do get there, it’s never going to be enough, because when you’re forged in trauma, you expect it. You end up being the one who inflicts it. That’s what PTSD is; it’s self inflicted abuse at the subconscious level cascading through the psyche, nervous system, and body to rationalize terrible shit that happened that you couldn’t control. That my immune system over reacts to everything is more likely a side effect of the PTSD than of any exposure to allergens. To PTSD, everything is survival, and the body becomes wired, locked in and only able to know and feed off of that. It is the ultimate pattern driving everything, and it’s so difficult to upgrade ones software after living in the PTSD state since being a toddler.

When my adoptive father’s remaining kidney was failing, his brain started going. The dementia was so life altering at every level. And I remember thinking at the time as I was watching him suffer with losing his mind, how much easier it would be if he wasn’t fighting what he couldn’t change. So what if he couldn’t remember the date or what he was doing, etc? It didn’t matter as long as he was feeling okay, enjoying himself in the moment. We pretend we know where we are based on what’s around us, but where’s that on the continent, the globe, the solar system or galaxy? We don’t really know a lot of shit, but just fill in the blanks and in those little lies, we find confidence in who we are. Aka, brain functionality isn’t that important as long as you’re happy.

And that had seemed a great way to look at the world, to just let go of needing so much damn control over what you can’t even control anyways. I fostered that mindset in me when the illness was raging. Grew it when going through trauma therapy for the shit I had been running from my entire life, because I refused to die an unformed reaction to what trauma had done to me. That mindset has helped me so much… but I have still been lying to myself, and kicking my ass as a result for believing that lie.

The reality is, it doesn’t matter if the mindset is damn helpful; we don’t get to choose if we’re capable of having that mindset when our brain break.

I hate that. I hate that so much that I have refused to acknowledge it. Because when my life is flipped end over end at the direction of a breeze, I’m already forced to accept so much I can’t change, can’t control in that moment. I want to believe there’s something. Sure, I can’t control the illness, or my executive functions, or energy levels, but I can control *me*. I can have some fucking grace in illness. I can be the right version of me to see things through, and shit will be fine as a result. The silent magic spell I tell myself as I try to control one little thing so that I can control the fear and frustration and pain and all the other shit that I’m stuck feeling from this illness.

In that lie is so much expectation and pressure I place on myself during the most difficult points of my existence. I just need to exist and be okay with my inability to get a say in what’s happening, and that’s it… but I can’t. It’s giving up. It’s giving in to sickness. It’s being lazy. It’s not the adult thing to do. Being disabled is hard enough — I am so far behind at life — so I have to work harder at everything, including not being sick when I’m sick. Because otherwise I’m giving up on me, and letting it win.

I am trapped here, making shit harder on myself because rest looks like giving up. It’s the inability to enjoy the moment because I’m stuck trying to be in a different moment. And it sucks. It’s so damaging, and I don’t know how to let it go. Because every time I try to relax, try to allow myself to just let go… it’s guilt. It’s shame for not fighting harder to be the person I know I’m supposed to be if all these things weren’t limiting me. You know, things like my body that for some reason I can’t even accept is a part of me, because if I accepted this body, I have to accept its limits as my limits, and I can’t. I am a defiance to all that is crushing me down, and now, dear fuck, I get to add on age to it as well, just natural aging. Where the fuck is my grace in any of this?

I need a reminder of the pattern of mindfulness. It doesn’t change anything in my life except my ability to accept what I define as unacceptable. And that is apparently everything. But I’m fighting that too, because I don’t want to be okay in this situation. I just want the situation to be better. But I’m the damn problem in all this. I want things I can’t have, and I stubbornly refuse to let those wants go, because as long as I’m looking at a goal, I don’t have to face, truly, how difficult this existence has been for so long.

I am still living the trauma pattern, doing everything to avoid acceptance of the now. Building up things that don’t exist outside the head to wall off that one little task. Letting go is both the easiest and hardest thing to do, and maybe that’s why, when it feels like the world is shaking, our hands automatically clutch, grasping for support. This instinct to hold on is written into our nervous systems, to define our safety by the act of clutching to something, anything.

Does it make us feel solid, larger and safer, grounded in another? It adds weight, strain, tight focus. Immobility. It becomes identity, location, purpose when it feels like everything is slipping away. And how we clutch the harder we are pulled from the thing we’re grasping, responding with fight, becoming more and more the goal instead of adapting to the situation.

I need to be vapor. Something that can’t grasp, can’t be thrown when the world shakes, can’t drown when it all crashes in. Empty of all those needless, heavy thoughts designed to weigh me down and form me in only one way. Every breath a spreading of self, breath of all those around, not lost, nothing to lose. Atoms commingling with the objects and life all around, sharing space and energy and emptiness.

The beauty of being nothing is that there’s nothing to fear losing.

The difficulty of this condition is in what it does to my brain. The chemical chaos, the extremes of everything. One feels a ragdoll being torn, thrown out of living. Over nothing. The wrong chemical or protein in the air. No intent. No one or thing to truly blame beyond my own fucked up immune system. And in those moments, lost to reaction, unable to control the instinct to clutch or to what I’m clutching to, is small, fragile fear and frailty, trying so hard to not be known as such.

Why do we know that fear is more dangerous? This instinct to hide what is so rational and natural in the moment? Accept, accept, accept. Why is the exposure of fear wrought with vulnerability more so than the act of feeling fear?

The rejection of help for a being that is part of a social species that is in desperate need of help. How many times as a baby did I cry until I learned that no one was coming? Because it happened that early, and it is so deeply wired in, who is to say if one can ever be more after that…?

I’m getting closer to me. I can feel it. It’s just this pile in the way that needs stripping down, unbelieving until I’m light and free of everything my nervous system is clutching to right now. It’s work, letting go, when your entire system has been forged to hold on from such an early age. And I keep thinking it only has to be done once, but no. This is the process. Coping with a system that has trauma set to default every time the world is perceived to shake. Eventually, hopefully, I’ll be able to remember that. But for now, it’s just doing the work and showing up.

I honestly don’t know why I’m sharing this part of my journey, beyond it needs to be shared. Because if I can’t find a place for me in my writing because of the desire to form a strong brand, I’m not going to be here to write. I can’t fit whatever neurosis my brain is trying to claim branding is — whatever neurosis the world insists it is — and if I value something conceptual over myself, it’s going to erase me. It always does. I have to stop participating in my erasure.

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