Category: Random Author Babble

My allergic responses have actually managed to get more problematic

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

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

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

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


Allergy attack

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

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

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

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

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

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

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

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

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

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

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

A Rambling Theory

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

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

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

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

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

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

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

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

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

New med

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

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

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

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

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

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

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

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

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

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

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

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

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

Guilt, the true spice of life…

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

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

Lowering Histamines and Looking For Balance

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

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.

May 6 2023

Lamenting A Life Not Lived Is A Fucking Waste

So today was pretty shit. After a few days of unprecedented calm with my immune system — and I’m still not sure what calmed it. If it was something I added or didn’t add to my diet, the rain that had washed out all the pollen, the fact that the new cat litter doesn’t track like the old stuff, hormones — I don’t know, and that’s frustrating as fuck. Because it’s back to before, and I’m just feeling how shit this is. Feeling it after having this surreal, beautiful vacation from my body overreacting to everything and making everything feel like death.

Which isn’t really an exaggeration; that’s what the adrenal insufficiency basically is. Low cortisol means high adrenaline as the body tries to compensate to keep the heart pumping without enough cortisol. And for whatever reason — maybe just plain old stress on the body — the allergies cause my already low cortisol to drop and my heart to race… Whatever. Anyways.

I’m here to ramble about how, in all this frustration of noticing how little I got done today — because my brain was in inflammation la-la-land by the time I woke to this allergy riddled, low oxygenated body — that’s all I ever notice. I notice my failures. I notice the life I’m trying to get back to, instead of the life I’m forced to live. And yeah, that makes sense — I don’t want to be in this body when it’s suffering like this. It’s dumb brain, agitation, racing pulse, low blood pressure, dizzy spells, pain bullshit. It makes sense to not want to be present for this… but it’s been fucking years now. Years of trying to get to a point of living while not wanting to feel the very uncomfortable life I do have, and yeah, where’s it going? What am I doing if all I’m doing is trying to get to something instead of experiencing the life I have?

My sister-in-law is dying. I’m not going to get into it, because it’s still in the process (with hope, but really, the kind of all you have is hope hope, because facts aren’t there to offer an actual substantial path through as it all crashes and burns.) And this is really about me and my feelings about shit — and my fuck, no one who is going through what she is going through and/or is close to her should hear my random emotional spewing as I cope with the news while thinking about my own selfish shit. So the less I connect me and my rambling to her and her family’s personal experiences, the better.

So yeah, dying. I get the latest “this isn’t us saying she’s dying, but shit just got worse and it’s obvious she doesn’t have long” news, while my body is going through its resurgence of fucking misery as I’m thrown back into the fear of if this is going to be forever. Is this all my life is but this damn allergic reaction and weakness and can’t breathe or sleep or think from racing heart, etc, etc? And it’s like, ten years now. Ten fucking years, and what’s waiting for me is what’s waiting for everyone, and this has been how I’ve been forced to spend the last decade.

I am not experiencing my life. I’m waiting for shit to get better. I’m still waiting for shit to get better, and I’m just losing years. And who knows what the toll is, right? PTSD alone is physical damage to the brain and body as it’s left unchecked and courses all these survival chemicals through you day after day, wearing out the organs until your body can’t do it anymore. My adrenal insufficiency is secondary; my adrenals still function for now. But my pituitary fucked off at some point, and without it communicating to the adrenals, my body can’t produce a safe stress response during times of crisis. Simple shit can drop me, and I saw it when the allergies were so bad I needed far more hydrocortisone to maintain. This allergy thing isn’t just stealing my time, and the things I do, but also my health. And I’m just, I dunno, done with it all. Like done, done.

That whole thing of life is what you do while you’re busy making plans? My entire life revolves around a condition that doctors still haven’t figured the fuck out. Because it’s not just allergies; if it were just allergies, the allergy shots would be enough. A freaking 24 hour anti-histamine would do the job. But it doesn’t. Certain scents — scents that don’t contain a protein source, aka, nothing for my immune system to react to — set off this cascade of insanity through my system, and nothing has been done to solve it. To even diagnose it.

It’s the specialist issue. Every doctor only knows one thing, and they don’t know where that thing connects with other things (aka, the human body), so I’m left going to one doctor for neurological symptoms (without a neurological source), another for adrenal issues (for a pituitary problem source) another for allergies (but not for the allergic responses to scents), and nothing is getting solved. Yes, pieces have been patched, but I still can’t go a breath near a damn litterbox without my heart feeling like it’s going to burst out of my chest, a migraine forming, and my brain trying to drip out of my ears.

I lost my 30s to this shit. Missed time with my partner and the people in my life I can’t get back. I’m missing people — life is happening around me, and I am missing out because every day is still this fucking issue, just a little less life altering. Destructive enough that I’m lying to myself thinking I can just jump right back into writing, but not so destructive that I can’t believably lie to myself. Oh, I can lie to me just fine.

I am ten years in this broken body and brain, trying to get back to the person I damn well know I am… while defined by ten years of this to everyone on the outside. If I lose that inner image of me, this is all that’s left. This. Sick, broken, every day a battle that I don’t want to have to fight anymore. When do I get to start being again? Or is it just going to always be this, battling this thing not interesting enough for the medical world to solve, but debilitating to me until it wins. Is this all it’s going to be, just running from suffering until my body just can’t do it anymore and dies?

I’ve lost me. I don’t like who I’ve become as a result of years of this. Fight. Defiance. Running on rage and bitterness and feelings of loss. The joy and enthusiasm and just pure optimism stripped from me as this damn thing keeps going. I’m sick of having to be wise, understanding of the things most people don’t spend a second thinking about because it scares the fuck out of them to even consider that they’re going to die one day. I was thinking about that since small, an abused foster kid knowing death was inevitable and the fleeting flicker of self was going to gust out. And so everything after was in defiance of that. Because fuck death and fuck anyone who would dare think they could cross boundaries and ignore others autonomy. I am running on embers from fighting to survive against this dumb fuck illness, and I don’t know how to fuel myself any other way.

This is who I’ve become while waiting to get back to myself…

Ten years a reaction. How the fuck am I supposed to know how to live a life now? Seriously? This thing has trained me back into a base animal surviving, and I see it, I fight with it, but until I can figure out what the pattern is I’m supposed to be slipping into, it’s just always going to be this default. This lack of living as time passes by and I’m left reacting.

It took my fucking vision. Fuck. There was so much art I wanted to make. So much I was waiting to do, and then it took that too. Like, what the fuck was I waiting for when at least then my eyes weren’t screaming in migraine pain or unable to focus? How was that somehow worse than this, and do I really think that I can still wait? That somehow it’s going to magically get better as this body keeps aging and breaking down from each reaction? Like, what does the pain matter in the face of that, of knowing that this could be my last chance?

Why do I have to keep counting all the shit I’m not doing, all the time being spent on things not getting done, instead of feeling any aspect of pride for the things I am doing? For the life I am living? Why does it always have to be a chase, the taste of dissatisfaction forever haunting me, fighting a clock as I add up all the hours not lived the way I want? If it hadn’t gone down this way, would I be searching for the elusive — I mean, it’s whoever I thought I was a decade ago, right? Like, is that what I’m looking for, trying to get back to who I thought I was before sickness interrupted me? Or was it before — who I could have been if not for PTSD and a fucked up start at the earliest of ages? Even then, if I had everything I think I wanted, could there be any satisfaction for this vicious brain that just wants to think all the thoughts and to know more?

Why the fuck does this version of me have to be so fucking cynical, and bitter, and so dissatisfied with all I’ve built, like all it can see is “what could have been” bullshit. I hate time travel stories. Absolutely hate them because it literally couldn’t have been. That’s just our dumb fuck brains insisting that “if this, then this” so that what, we can hate ourselves a little more for not having had a choice with our past? Or thinking we had a choice and blaming ourselves for not taking it? Why is being human this damn stupid and needlessly painful?

Lament of the fallen.

Dissatisfaction is self victimization at the base psyche level. To have so much, but then to let it sour as that thought crosses “if only…” It is so fucking worthless an endeavor to waste ones thoughts on, and I don’t really even think about it — actual thinking on “what if” is me shutting it down with “don’t be stupid”. But I failed to notice that I have been living that feeling every day while thinking I was safe, because the thoughts weren’t there.

No, the thoughts I have are… just wait. If you can only get past this, find an answer, things can change. If you can solve this, you can start living your life. This is too hard right now, but wait, heal — surely we can heal — and it’ll get easier.

10 years waiting for a different life because I couldn’t let myself enjoy the one I have. And yes, it sounds reasonable at some level — it sounded reasonable AF when in pain and fighting for every moment — but it’s all I know now. I don’t know what to do next or how to do it. I’m just stuck with this feeling that something was supposed to have changed, and shit was supposed to be easier — something that isn’t this is still needed — and it’s not here.

But there’s nothing left. It’s just me not here. I’m not living yet, still waiting for something that’s never going to come.

When every moment of every day beyond @ a 4 hour window was pure exhaustion and the pull of sleep, I couldn’t let myself sleep. I was fighting for so long, I didn’t know how to let myself sleep when I needed to sleep. And that’s been this illness for years now. This desperate need to measure my life being lived, only knowing I was alive by how I battled with everything, instead of just living. Instead of resting when tired like a being that didn’t define sleep as death.

But no, I was doing all the things and saying it was nothing while waiting to be allowed to do anything else. There was no meaning to anything because it was me sick, me interrupted, in the waiting room of life furiously scribbling notes instead of where I thought I was supposed to be and what I was supposed to be doing. And now, it doesn’t matter what I do; that feeling is who I am. Dissatisfaction and waiting to get to the place — wherever the fuck I’m supposed to be that means I’m finally there instead of here, and can finally get on with living.

It is such a waste of a life. Not illness — illness is just a part of life. Death is a part of life. But not appreciating the one life I’m living? That’s the fucking atrocity. And I don’t know how to change. It is so deeply ingrained, needing to know I’m doing something “worthwhile” based on a metric system I’m never going to be allowed to win, partially because it’s not mine. It’s trauma. The conceptual world I built around this illness and who I am at the center of it needs to break, the way it did for the PTSD of early years. But I have been so stubborn to even acknowledge that the illness was fresh trauma on top of me treating old trauma. I just wanted to be elsewhere already, not having to do all the fucking work all the time just to enjoy a simple moment.

I’m tired of being me, whoever this reaction has become. I had a really shitty day, got some very devastating news, and have still managed to find a way to beat myself up for not being whatever the fuck my judgmental brain thinks I’m supposed to be to be okay right now. There is no winning in here. I can’t even let myself feel bad without trying to make me a “better person” by pointing out how I’m currently experiencing life wrong — seriously, what a fucking monster of a brain I have…

The thing is… My adoptive mother was sick all the time. Cancer. She didn’t tell us until we hit high school, so she just seemed, you know, tired a lot. All the time. Missing out on the things we did. Barely doing things for herself as it progressed.

I think at some level, I feel like I’ve failed her that I could ever get sick and let it interfere with my life. Because I owed it to her to live what she couldn’t.

That’s what surviving is, right? When you lose someone, but you need to hold onto them. So you carry them with you, no matter how heavy the weight, because that proves love. We are so primal, we still instinctually believe the pain of love is proof of love. So we carry that pain. We hope to be forged by it, changed by it, so that we never lose the ones we love.

My mother had such big expectations for me, and a will of steel. And if she hadn’t died before I started college, I’m sure I would have been on the path she wanted, the one she could never tell me, could never prepare me for, because the cancer got her brain by the end. But my fuck, I was going to be someone for her, she loved me that much. I loved her that much.

So maybe I remember tonight why it’s never going to be enough, whatever I do. A part of me is still waiting for her to tell me how to become the person who proves that I still have her with me, and it’s going to be a long wait…

I guess survivor’s guilt increases the older one gets, and the more you’re left surviving while others don’t… I dunno. This is life. Fucked up, mundane, human. Forever coping with being alive.

April 21 2023

Style: Minimalism

Okay, I’ve decided the game

It’s going to be a choice of style. I’m struggling with two huge limits as a result of my current writing style: 1) my ability to focus because of the ADHD, and 2) my ability to read with my vision limitations. I need to make this easier on myself, and the support tools that I have at the moment are not enough. So what is the next direction?

Minimalism in style.

For one, it’s a challenge. It asks my brain to look at everything in a completely different way as a writer, and that’s something my brain enjoys. There’s a game in there. There’s a game with a desired outcome that can be measured.

This means there will be less decision fatigue because I’ll be moving toward a desired outcome instead of feeling like I have so few limits, that I have to spread out in all directions.

Less words means less editing. Editing is where I’m struggling the most because of the requirement to read as part of editing. It’s an acceptance of the difficulty involved with my executive dysfunctions and visual impairments, which is a healthier way to move forward. There’s less self-ableism when I’m making things easier on myself based on my limits, instead of fighting limits that can’t be changed.

Ideally, it will be less time-consuming — but there’s no guarantee of that, and that’s not necessarily a goal I’m looking for.

I suppose when looking at writing as self-publishing, the measurement of time is quite important. The faster it is to get from the conception of the product to the publishing and income reception of that product is absolutely important. But I’m not in a race right now. I’m in the experiment and understanding phase of everything. These metrics might become important later on, but they are easily abused into something self ablest if I’m not careful, and therefore aren’t a goal for me at the moment.

My goal right now is to be able to have a completed story with the least amount of pain, but one I can still feel proud of. With the requirement of keeping my mind engaged. And these issues are really what kill my time, if I want to get into the whole measurement of what it’s been taking to get me to complete this writing process for one basic story.

Time sucks

Time is taken away because of allergies, which slow my cognition, and flare executive dysfunction, making my attention span even shorter than its default.

A lack of schedule allows for every random thing to become a distraction, instead of something put aside in its own time block away from my writing time block.

The requirement to read as part of the organizational process of writing. I’m treating this with my support tool editor, creating visual blocks that the text falls into, so that I can focus on the purpose of each block, leaving notes to myself to help keep that focus. But this is still time consuming.

I know it’ll grow easier as I become familiar with my new process — I’ve literally designed it with this in mind. But right now I’m in the phase of training my brain, which can be extremely arduous because of my executive dysfunctions. Once I learn something, it’s second nature (when not ill), but the learning process can be difficult. Especially when learning through text. Reading is taxing on me, the focus it requires, especially when every small detail is important with writing.

I didn’t realize how much my brain filled in text that I hadn’t read. It leaps. It glosses over entire sentences and paragraphs, and just fills things in. I suppose I’m lucky that it’s usually filling things in the correct way, until I find myself faced with a set of instructions that I can’t focus on, and I realize the extreme limits of my brain’s inability to hold attention to text.

There is so much time lost in this battle to keep my brain focused. And that my allergies are so intricately connected to my brain’s ability to focus only makes it all the more frustrating. So, a game. A game where I’m not focused on the stakes or the frustration, but instead I’m leaning into the path of least resistance. With a goal that keeps my brain interested enough that it won’t automatically fuck off like it usually does when reading.

And maybe it’s time to go back to listening to text to edit as part of this process, but I’m not a great audio learner. It’s still really difficult to focus. I’m a good visual summary learner, taking concepts as a whole and organizing them while ignoring the unnecessary details. But this is writing, where every letter is a necessary detail, so I’m kind of shit out of luck in that regard.

Perfectionism as a coping tool to trauma

I miss writing short stories that are actually short. I miss being able to have an idea that doesn’t have the exhausting requirement to flesh it into something so much larger. I’d like to be able to get back to that, and I know part of why I can’t right now is that I’m stuck in the neurosis of perfectionism.

I’m putting a lot of self value into my ability to write at the moment. I think it’s normal for what I’ve been through. Writing is one of those measurable things that can tell me my brain is working after the last decade of really messed up cognition and health, along with all the fear that went into not having control over what was happening to me. The neurosis right now is just these little self checks asking “is my brain still working?” “Is it happening again?” “Am I going to disappear into this invisible illness, and have it all cascade out of control once again?”

As much as I keep reminding myself the trauma that occurs with long-term chronic illness, I haven’t really addressed it much in my day-to-day beyond trying not to be so self ablest. Getting to this point of getting to say I “overcame” chronic illness is rare, impossible, and it never fully feels real.

It’s surreal after a decade of struggle — fighting invisible, microscopic enemies floating on a breeze — to be handed an answer. To be asked to perceive my existence, in what was once such an unsafe world, from a place of safety. And until I can feel a little more certain with my health, I don’t think anything that I do in the world is going to feel genuine and insignificant. Instead, it’s just another way of measuring if the illness is still gone, if my brain is still working, or do I need to act immediately to prevent everything from spiraling out of control all over again.

Redefining minimalism as a style

I’m going to have to remember what minimalism is. How it’s effective writing, instead of sketchy writing. I think a part of me is worried that to become minimal with my word count is to become lazy as a writer. Because when I first started writing and making short stories, I was minimal because my brain literally couldn’t be anything else. It couldn’t focus, couldn’t see its inability to create effective visuals and mood. And I was just so fucking tired all the time that anything was good enough. Any amount of words was proof I was alive and my brain was doing something.

Which is probably why I’ve been avoiding short form writing since recovering a lot of my cognition. At some point I associated brevity with inflammation of the brain — because trauma is damn frustrating like that.

So yay, I get to learn something. I get to challenge myself. And through that process of self-improvement, I’ll also be editing, writing, making my life easier based on my limits, and getting closer to feeling safe as a self published writer again. I’m interested to see how it’ll go, which is already a good sign that my brain is engaged in this new game.

April 20 2023


So I spent this morning on my drive to get allergy shots thinking about caving, about changing Breeding his Nephew to add a paranormal element so it would be allowed on Smashwords (Amazon would ban the fuck out of it, but Smashwords allows certain kink if there’s an obvious sentient brain involved — although it’s been a while and I should really recheck all the terms of service on this shit to make sure…)

Anyways, I was considering caving, only to realize it was coming from a broken place. It’s fear. I’m looking to add multiple characters and story arcs to what was supposed to be a basic fuck fic reminiscent of the whole pittbulls and parolees thing, all because a part of me is afraid I’m not going to be able to get back into writing. That the sickness will grab me once again, and I’ll lose so much time and cognition that I’ll never be able to get back to my life.

And that’s a dumb fuck reason to do anything.

It’s wrong. I already know it’s wrong. I’m absolutely better than I’ve been in years, and I know exactly the things that set me off and how to deal with them. It’s never going to be a loss of years again with my brain dribbling out of my head while I’m left staring at a wall trying to remember what a person does every day. I understand the airflow issues that push every allergen in the house into my room, the litter box as the source of everything pain/destroying to my health, and there’s no reason to be afraid it’s ever going to be as bad as before. I don’t have to make choices from that place — bad story choices, btw.

Like, seriously, what a waste of time it would be to add in multiple minds to this thing — and there is absolutely no way you can add a touch of magic/paranormal to a contemporary story without demanding a completely different change of plot. Everything becomes about the magic in the normal world, instead of the kink. No.

So, I’m refocused. Added the note taking linking element to my scene editor to be able to link and auto-populate descriptive text into the database without filling out a bunch of forms each time. Good. My eyes hurt, which is shit, but whatever. Allergies be allergies.

April 17 2023

New editor and delays

So after I realized the issues I face with editing — mostly visual and focus issues — I decided to make an editor to help. And it’s been amazing. Learning to code has really allowed me to create my own support tools, and it’s just opened up so much. I’m going to be using this to write, it’s been so helpful, and I’m really excited about it.

Unfortunately, I’m faced with old challenges this week and who knows how long, as my allergies flare. At first I thought it was a cold because my throat just became raw a couple of days ago in the matter of minutes, and I had no clue why. As it lasted, and the heat increased with the weather, I assumed environmental allergies from the sudden explosion of Spring. It took until a day or so ago to realize it was the new cat litter we got, and it’s really bad.

We stopped any kind of ‘dust’ based cat litter ages ago when we realized how bad it was for the cats and humans. Somehow, those lessons were forgotten — I swear I just become complacent, you know? Looking for convenience. And these litters make those promises of “no dust”, but they’re fucking lies. I don’t know what the standard is for dust in the cat litter industry, but however they’re defining it, they’re full of shit.

So I’ve been sick. And it’s been the worst version of the allergies, meaning the exhaustion combined with the difficulty moving my limbs, and fucking save me now, the face pain has been sparking again. It’s been over a year free of that excruciating pain, and one fuck up and I have a house full of dust and the screaming face pain is building. I’m hoping having a bunch of teeth pulled means there are less nerves in my face to react, but I can’t know. Not until the allergic responses get so bad that it’s beyond anything inflammation wise, and at that point, if it’s not screaming pain, it’s severe cognition loss, which is its own hell.

I might be living out of my car a bit until I can get the dust under control — or just to avoid my allergies reaching that kind of extreme again. I don’t know. I’m going to talk to my allergist tomorrow, see if they have anything useful to recommend. At this point, I don’t understand the lack of solutions from the medical community. I can’t be the only one who gets screaming face pain from allergies. I can’t be. It’s clearly an inflammation response that is happening in the nerves of the face, and that I keep getting blank fucking looks and no help after all these years isn’t just nonsense, it’s a failure of the medical system. This is an a + b = c problem, and I shouldn’t be the one to have to keep pointing it out.

Whatever. I’ll be writing while I can. Like I said, the face pain is more a threat, and less full blown screaming right now, so I’m hoping to cut it all off before it reaches that point. I need HEPA filters and I’m going to have to break out the construction level air filter that was powering the clean room when I needed a clean room, and see if I can capture the dust asap — but it’s going to be days for new filters to arrive. Have to wipe down every surface, walls, ceilings, floors, everything. The fine particulates of the dust is just as bad as whatever is hitching a ride on the particles to my system right now, hence the hoarse throat.

One day, if I ever get my life back long enough to not be struggling just to survive, I’m building a toilet designed for cats. At their level, so if you have a cat with mobility issues, they don’t need to risk falling from a height to use the bathroom. I don’t know why the fuck humans have normalized raw sewage and dust in their houses as “sanitary” when it comes to cats, but it’s a fucking problem for everyone involved. If you have allergies, or find that you just don’t feel well at home, and you have a cat, that litter box should be your first concern. There’s nothing okay about 2023 still not solving this shit. We don’t have chamber pots anymore for this very reason, so why keep with litter boxes?

March 9 2023

Migraines and Possible Vision Solutions

Well, apparently I’ve been overdue for a good migraine. It’s going on day 3 — started the middle of Tuesday after a weird bout of crying, and when it hit it didn’t feel like a headache. It felt like I had gone full right back into an episode of fatigue, brain fog, and loss of motor skills, just hunching over in front of the computer, my brain glitching out unable to do basic shit again. Seriously thought it was a thing — like an ER thing — but nope, guess that’s just the opening act of this current migraine, one that has hit with fun bouts of euphoria, less fun anxiety, and really fascinating skewed visual distortions. The pain has set in this morning, hitting in waves, and gonna be real, it’s fucking boring being sick.

I have been able to get some work done these last days — seriously, what am I really supposed to do with my time, sick or not? Stare blankly at a television screen? *snort* I’ve added some useful bits to my database code that allows me to copy templates and alter, making the multiple sheets in the character form creation a faster process. I’ve made some basic forms that I’m adapting for Demon Bonded at the moment — that’s where I wanted to go when I finished the last PATB book. I wanted to jump into Demon Bonded, get another episode out, and then write another PATB, but my executive functioning just couldn’t support that by the time the mold was cleaned up.

I’m probably going to continue coding as much as I can through the pain — creativity just isn’t sparking from this place. My brain is going through weird distortions, and I don’t want to end up writing a bunch of nonsense on the current work only to need to edit it all later. (If I’m real, I shouldn’t be coding cuz if I fuck that up, it’s so much reading to find the problem. But I can’t just sit here all day being sick. Fuck that. Let’s make a mess.)

I’m noticing something interesting of the last few days. Exciting, even. My vision issues are different with the migraine.

So, I’m not sure if it’s the fluid build up/inflammation changes happening in the head, or something to do with pain receptors not reading when the euphoria hits (leaning toward this one) but my eyes haven’t hurt much at all the last few days, even though I have absolutely been coding. I’m still photosensitive, but not in the same way I’ve been on a daily level. My eyes are still fucked, don’t get me wrong, but this eye condition has always been here since I was a kid. It’s only been recently that it’s been preventing me from doing the things I love.

After my insurance provided me with the most painful, useless support glasses to help me read the screen but instead gave me eye pain for days, I had kinda given up a lot on finding a better perspective on this shit. I hadn’t realized I had adapted down into the daily baseline pain of this condition, and that it might be better with a different intervention. The pain shutting off during the early days of the migraine reminded me that it doesn’t have to be this way. That if I can find a better solution, I might be able to claw back more of my life and functionality.

And maybe that’s just a lie I’m telling myself out of desperation and hope. But fuck, I can live off of lies if it gets me pushing toward a better tomorrow, you know? I think that’s part of the human condition, otherwise we’re just staring at the inevitability of death every day until the end. (what, that never crossed your mind as an activity you can start today? Oh, darling, existential dread is just a thought away.)

So I talked to my PCP about migraine prevention, and we’re going to try something different to the neurophthalmologist’s protocol. They can’t really be mixed because of how aspirin can interact with the new med. And if it doesn’t work, I’ll be seeking out a migraine specialist to see what they can do. What I’m looking at will take weeks to work, if it does work, and given my questionable brain chemistry, it might not be a viable option because of how it impacts the serotonin system. Aka, I might go manic and have to stop, leading to more lost days of work. But if it does work, it won’t just be preventing migraine pain; it’ll be helping with all pain. Like the eye pain and the strain of the muscles as they struggle to not default to their resting, skewed position when in use.

So as shitty as this migraine has been, I’m quite happy to tear out a silver lining and sew it into a couture garb to wear for the next months as I see how this new treatment goes. (Because yes, I’m also watching Netflix’s as I code, and I found a new season of Next in Fashion.)

March 6 2023

Currently Coding

Just wanted to check in and assure peeps that I haven’t fucked off for a bunch of years again. ^^; I’ve been working on my story reference database, finishing the template creator and building character sheet forms. It’s essential for me to have a one stop, visually organized system of reference to be able to continue to write the complex serials like Demon Bonded and The Paranormal Academy for Troubled Boys. The ADHD treatment has helped my executive functioning a lot, but it’s not a cure, only a treatment. It’s my job to create the tools that work for my unique brain (and eyes) to ensure I can return to getting these stories out with any kind of consistency.

Last week was also a week of really bad vision, eye pain, and allergies. Apparently something was growing in my humidifier, and it took a lot of adapting down to the pain until I started problem solving — it’s rather fascinating how much suffering a person will endure until they finally wake up out of it, huh?

Anyways, that’s much better now. I was able to flip my sleep cycle again (only lost 1 day this time around) so that I’m waking up at dawn instead of falling asleep. And yeah, it’s been really nice to measure the clarity of thought my brain can produce lately when coding. Getting the adrenals treated has helped so much. I’m solving these coding issues one after the other instead of the slow, confusing slog it used to be, and I’m already into the final form creation. It may still take a week or two to get it all polished up, but my goal is to try to task switch into finishing up the current Breeding His Nephew scene this week so I don’t completely get out of the habit of writing.

I really struggle with balance. It’s kind of like my brain loads everything it needs for a task like a giant video, and then buffers until it’s all running smoothly. But switching to a new task requires loading completely different info and all that buferring happens again. This is why the database is important — I need to store things outside of this wonky brain of mine so it has less it needs to load up each time. It’s quite practical, but for some reason I really resisted getting to this point…

April 7

Disability visibility and self ableism

So, this might not be of much interest to those who are just here to read, but it’s something of importance to me because it relates to who I am as a writer. Especially during these last 6 years of illness.

I was recently diagnosed with ADHD and autism, but before that diagnosis was 6 years of torment, and before that a lifetime of PTSD. You’re only seeing this website because 6 years ago I became so sick and bedbound, I decided to start my own business and self publish. I have been ill this entire time — but my skills as a writer have fluctuated greatly, seeing these sharp declines and improvements. This, on learning about my autism, now makes sense.

It wasn’t brain damage and repair; instead these language fluctuations are associated with autistic burnout. Now, the allergies and dopamine drops I was experiencing aren’t necessarily autistic burnout, so much as because I’m autistic, stress on my body can lead to certain symptoms. So having a chronic illness such as being allergic to mold and unable to handle the scents of certain things can result in autistic burnout.

Why is this important? I have psychologically kicked my ass for years now, waiting for my ‘brain to come back’ so that I can allow myself to write. As a result, I internalized my ability to write as part of my self worth, internalizing this very normal part of my existence — the part where stress breaks me and my brain loses language skills for a period time — and saw it as a character flaw, a moral failing, failing at being a person, instead of part of who I am. This vicious, cruel, internal bullshit I spew at myself is ableism. Instead of accepting myself for who I am, I was being an asshole to myself — not making anything better, might I add — and just being miserable.

This is also connected to the perfectionist problem I have. Because I’m waiting to be ‘perfect’ before I allow myself to write. Aka, I am the biggest dick to myself for nonsensical reasons to protect myself from what I saw as inevitable failure. What failure? Who the fuck knows. I started a business sicker than I have been in my entire life; I have no clue why I thought I could fail when at this place. But I managed to get a little bit better, and I saw any return to ‘the worst’ as failure. Fun.

I am now aware of this, and working on it. Which is why I’m also writing again. And this will be a process, because I’m still angry with myself that my writing is not at a level or ease that I know it could be, and therefore my brain has decided it *should* be. But whatever, until I get a therapist, this is where I’m at on this topic. I need to write when my brain will let me write, even if it’s total shit, because if I don’t, I’m judging myself for this very normal autistic trait I have of losing language skills when I’m ill. I don’t get to do that to myself — I’m bad enough without being that level of hateful over something I have no actual control over. Autism is me. That’s it. Time to fucking love it instead of this knee jerk hate fest.

If I were a scientist–which I am not, but my brain would like to be one once it grows up >_> — I would love to point out all the correlations I have found with autistic burnout and low dopamine. These loss of language skills are also connected to low dopamine. Stress of any kind is connected to inflammation, and chronic stress lowers dopamine, leading to cognition, memory, motivation, emotional regulation and impulse control losses. My multiple chemical sensitivity could be just as easily explained as how my brain processes scent because of autism, leading to what feels like screaming in my head, and pain through my entire face over certain scents. The fact that I become more ‘neurotic’ — which is really hyper systematizing — when I am ill, is an autistic trait growing more extreme in correlation to inflammation. My agitated tics show up during sensory overload and illness — inflammation exacerbates autism, and potentially it is that drop in dopamine which is the trigger.

I have not found anything online on how to cure/treat autistic burnout outside of ‘give it time,’ but I suspect if they instead started helping to improve dopamine levels and support adrenals, autistic burnout would not disrupt the lives of so many autistics, disruptions that can last for years for some.

This shit needs to be studied, but I am not a scientist. I’m just someone trying to crawl back into my life after so many years of exhaustion and illness. I am also someone who is trying to come to terms with my disability instead of ignoring it, and only showing up on my ‘good’ days, which have been so damn few that I haven’t been showing up at all for months at a time. I need to deal with this and accept my situation. I designed and built a fucking clean room to overcome all these immune problems and multiple chemical sensitivity, and for some reason I thought I could just pretend none of it even happened; I’m living in a bubble pretending I’m not disabled, and no, that’s not dealing with anything.

I’m trying, babes. I am fallible and broken and I try every day with subpar results, but I’m still trying. I only like to be seen when I don’t have to struggle to do the most basic of things, but that just leads to complete isolation and this illusion of how life is for someone like me who is disabled. They talk about disability visibility, but honestly, if I keep hiding away, I become the reason I’m erased in this really fucked up, sociopathic world that only wants to show the most beautiful, idyllic, abled among us. I have never lived in that lie of a world — I have never wanted to — but for some reason I still managed to contribute to the illusion by not showing up when shit gets so damn difficult.

So here I am. Tired. All the time I am tired and I don’t like to talk about it. But I’m still here.