(Nonfiction) (PotDA 6) How I learned I had HAE

I initially wrote this in an attempt to get it published. Well, that was the ultimate hope. My more realistic goal I was hoping sending it to editors might give me input so that I could edit accordingly. Like the teachers I came across in the public education system had assured me.

I really should have been more skeptical of people giving me advice on how to get published when they were oddly reluctant (read: never produced) to show they followed their own advice and got published. This is not how, at least in my experience trying a number of magazines over the past few months, it worked out.

Instead they say something like, 'It was well written, but not for us'. Maybe a little 'You have a nice voice and it a deep and touching read. But not for us'. Basically, a lot of brushing me up with a compliment before the normal rejection that all reads the exact same. (Much like my emails from the lawyers and the claims handlers of social security!) There is no real input. Nothing of substance nor anything constructive. Nothing negative even! There is nothing on WHY I wasn't accepted so I may improve. As they want a "unique creative voice, that story only YOU can tell, and blah blah" it'd be nice to know how I do not fit their mold so I could possibly use this apparent skill in writing I have for profit. Maybe get more knowledge on HAE out there. Maybe make this just a little easier.

Since that doesn't seem to be working with this particular article, and that response is getting tired given what it involves, it is better to have it here so I don't have to repeat myself to lawyers and doctors.

On that note! Hello new attorney, should you be reading this. You see, I finally got a letter back from my attorney. It simply said that I had my case transferred to someone new, who was writing the letter, and yet another copy of the memo they have explaining that the average wait time to be heard by an attorney is between 15-17 months. The only difference is somehow the wait is even longer.

All avenues say to pester and be heard, so I am sorry but I am aiming to do that. Especially now that I am being handed around like a hot potato legally, federally, and medically. I got a letter sent to me saying I am no longer elligable for Medicaid. More distressingly, it says the reason is that Medicaid is ending.

No more therapy, no more dentist, no more overpriced painful medication that at least is something, no more doctor visits, nothing. I can not afford it, and I am not going to waste money that can be spent on the thing that at least wont' be pulled out from under me. Where there are pot heads, there will be someone who grows and sells it.

The sad thing? Those "criminals" (mostly) treated me a hell of a lot better than this system. Than medical marijuana. They at least let me wait out in the cold in my fucking car. They at least ADMITED I had a god damn blood disease.

Enraged rant from 9/27/2017 over. Not a rant on when I was 16, when I first found out that I had this drama coursing through my veins. Hopefully this new madness doesn't make me have to repeat it out of the stress, eh?

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There had been signs, but I did not know I had the genetic blood disease that would reprogram how I approached life until I woke up with the worst stomach ache of my life a little more than a decade ago. The dread of waking up for high school washed away with a sucker punch from life. The sharp stabbing from my gut should have made me realize this was no ordinary stomach bug, but I have a terrible tendency of ignoring my gut instincts. I only grew mildly concerned when I began to puke with the cadence and fervor of a dying banshee. Every heave feeling like my muscles were testing the tensile strength of my ribs while simultaneously trying to send my stomach on a whimsical journey through my esophagus. Not only was my body violently rejecting what looked to be a liquid combination of every meal I had ever had or dreamed of, but it adamantly refused to let even water back down my overworked throat.

I’d, of course, nurse water down at every opportunity in an attempt to wash away the bitter bile that clung to my throat like an oil, as well fight against the dehydration creeping in. This would end up being a fruitless effort. It would give me relief from the dehydration, only for it to be replaced with spiraling nausea. The dry feeling of a void in my throat spreading into my gut would return shortly, a few sips of water hardly held it back. All the while the jabbing pain in my stomach only seemed to grow worse. It even seemed to be warm, possibly burning. It is hard to tell if something is a particular flavor of pain when there was a far more notable kick in the same area. I would later find out this was due to a portion of my gastrointestinal system swelling up. I would also later find out this would be a pain I’d become intensely familiar with.

This would go on for two to three days before my parents realized how serious it was. They were worried, of course, it was just clear at that point I was neither sick with a stomach bug nor performing some form of elaborate ruse to get out of school. Though I was, at that point, still weighing whether or not getting to miss school for a few days was worth the agony. Not when you can’t enjoy Pokemon Snap, was my reasoning. While I was certain it was just that food poisoning thing everyone was talking about, as I was experimenting with cooking, my parents feared that this was a sign they had been dreading. My birth mother, having been adopted by my grandmother in a chapter of my life worth its own essay, had a genetic blood disease called Hereditary Angioedema. I had a 50% chance of getting it at birth, and I have come to learn that this game is rigged in Nature’s favor.

Surprisingly, a juvenile puking like Pazuzu had an interest in his soul did little to hasten the eternal waiting that is common with an emergency room. Parked between someone with a mild fever and another with a few twitches, we spent an eternity waiting to be seen. As the hours ticked by I became more and more familiar with the pulsing in my gut, having leaped beyond the stage reserved for crying and whining and now locked firmly in the anxious groans and curses towards nature and any deity that I could remember. Luckily I had always had a fondness for mythology, so I had a nice list of fresh legendary gods and goddesses to gripe towards.

It was rather embarrassing carrying around the black trash bag, what with it smelling like an inside out stomach while sloshing with every step to make certain people knew of its presence. Given the pain in my stomach and the overwhelming exhaustion that comes from dry heaving through the night, I figured it easier to use that to dry heave into. Nothing was really going into the bag, but I figured it’d put people's’ minds at ease. At some point, I had ditched it in exchange for the toilets. Any hope I had that people might think I was in there doing something natural was squashed by the rather disheveled looking man. The man was waiting in a lobby far enough for me to have an idea of the radius of my retching, which by this marker was already alarmingly vast, and made it clear he had heard by courteously asking if I was alright. The concern in his eyes and hanging in his voice made it clear it wasn’t purely an attempt to be cordial. Given the pained noises that your own swollen stomach will cause as it gyrates to the beat of your hoarse vomiting, the man may have just been wanting to be sure I would not respond in tongues or by crawling away on the ceiling. Possibly he feared something worse, like whatever the news was frantic over that year.

As haunting as this situation may be, It is surprising how quickly you get used to pain. It might burn and pulse so that every second has you thinking of it in some capacity. It might make it so every tiny movement makes your every nerve scream and your brain berate you for attempting to function, it might strike when you are too young to process the reason or too old to overcome. It might be due to an immature belief that ‘big boys don’t cry’ or from being hardened due to previous experiences. Like a bad smell, you can grow accustomed to the agony. To the point your every twitch doesn’t cause you to bark out a yelp of pain.

It got to where even I was surprised that I didn’t fully freak out as I was loaded into an ambulance. Shock and adrenaline is a hell of a drug. As nice as the doctors there were, they were not set up to house an adolescent in a hospital bed at that facility. The fresh hell I had been whisked to, however, was another matter entirely. Thankfully I had been given a lovely dose of morphine to keep the pain and nausea away. Also helpful was the IV that I was now attached to pumping me with all the glorious liquids one normally has when in deep stages of dehydration. I was told that if I hadn’t come in when I did, I’d have been at a high risk of complications or death from the lack of liquids, or anything for that matter, in my stomach for the past few days. The anxiety and fear were not so easily stifled. It was here I learned of my disorder, mostly from my parents, something that took quite a long while to sink in.

Hereditary Angioedema is a genetic blood disease that is rare enough that, now a decade later, I still spend far more time explaining my disorder and symptoms than getting any headway in my care. This was proven through my doctor’s insistence on cutting into me and putting a camera in there to be certain. Luckily, my parents talked them out of it, for you see this disorder causes swelling in random places when mental or emotional stress is involved while if I have any physical stress, such as a hit to the arm or merely over exerting myself) the area will swell. The swelling tends to be to the point, should my hand swell, I am unable to bend any of my joints and lasts anywhere between two days to a month. If I am so lucky. So should the doctor have made headway on his desire for a bit of surgical spelunking for what was wrong, I would have likely had to deal with the areas cut into swelling. Our arguments were treated as if we were belligerent, not that my step mom had experience dealing with this with my birth mom.

Luckily, in spite of the Doctor being a prat, the nurses were immensely nice. They even had this small tv on a cart with a ps2 plugged in they let me use occasionally. As the entire experience was maddeningly stressful, the distraction and escape helped me process the new tidbit of knowledge about my biology. Specifically, it didn’t seem to be my biggest fan.

This might sound like I am allergic to stress, and in a sense I am. Antihistamines and the typical allergy medicine don’t do squat and the actual medicine has been hit and miss. 98% miss. Not many companies have room for such genetic shenanigans either. All this I fretted over as I sat in that hospital room as they observed me and made sure my liquids would be back to normal.

How do you escape stress? This demon that escaped the mouths of every living being. Vibrates from every object and every mild action. How could I possibly live when the world itself has potential to kill me? Goggle did nothing to soothe my worries. It instead believed it would be helpful to fling the statistic that 33%-66% of sufferers died from complications, most often asphyxiation, due to swelling. Life has taught me many things, but this one event taught me that the internet was terrible for anxiety. It did wonders for making mildly stressful situations evolve into a full blown fit of hypochondria. Another thing I learned, for the curious, is 85% of all statistics are bull. As that statistic has steadily dropped since. Be it modern advancement or better information, it no longer festers in my mind.

Back then, however? It festered. It consumed my every thought and action before I even realized it. I began quitting hobbies left and right that used to fascinate me. Worse? No one could blame me. In fact, everyone encouraged it. When your own body is puffing up like a balloon at the drop of the hat spurred on by not just these physical hobbies but the everyday madness of life coupled with the special circumstances life decided to dole out to me to be CERTAIN I did not live a single second without madness and anxiety itching at my cortex. I struggled through the pain in others though, and I found what was worth holding on to.

I often remember sitting in that hospital room bouncing between wallowing in self-pity and rage only to tug myself up with an imaginary pep talk. Only to crumble. Then rise. A tremendously annoying cycle that repeated in those few days. As I am sure many do in their darker times, I often think of what I would tell myself then to improve my situation now. There is one thought I seem to always want to say.

It might have even started off as denial, but really, I was right in this sense. Everything would be alright. It’d be a struggle, it will continue to be. Even when my knee is swollen, even when I need a cane or a bit of help, I will get back up. Eventually. Maybe the pain is too much, or my energy is zapped. It is fine to relax, to contemplate. Maybe even veg. I will rise back to my feet. Even if every fiber of my being tells me I should give up, that nothing is worse this much struggle. I know at the bottom of my heart I will learn something from the experience. Be it something as small as the situation itself.

Sadly I would not be able to ease his concerns when it came to avoiding stress entirely. It lurks like an angry beast. Nestled in people's actions. I often relate it to being allergic to wasps, only everyone and everything produces them. Every word, every step, every thought. It takes a lot of time and patience to learn how to avoid the swarms. It was necessary to keep the stress from stinging me.

That wouldn’t be the first time I would have to deal with that exact situation, nor the last. Life is still hard, and I may write more on what I learned from those struggles one day, but I will always write. I will turn my situations into something I will be proud of. Maybe a piece of horror, maybe a bit of the blues. Maybe I can turn it into a painting or maybe I can warp it into a 10 part mini-series. The disorder might try its damnedest to stand in my way. Be it having my gastrointestinal system swell the night before my first day on a job, leading to being fired, to the pointlessly difficult struggle that trying to get Disability is. What doesn’t kill you makes you stronger after all. It builds your characters. It might slow me down for a short time, but I will never, ever stop.

Being stuck is far too stressful, after all. Got this thing about stress.

#nonfiction #rant #hereditaryangioedema #medicaid #medicaidending #why #cosmicshenanigans #HAHAHAHA #drumpf #gastrointestinalswelling #hospitalstay