Hello and welcome to my little medical education corner!
Please bear with me while I re-do this thousands of times.
Sorry. I'm bad at explaining stuff.
Being young and disabled has put me in a position of constantly having to defend myself; why am I not keeping up with my peers, working, finishing school, dating, etc? Most folks seem to grasp the concept that something is wrong, but still can't wrap their minds around the consequences- like why I'm still living with my parents, or why I'm applying for disability when I'm "only" 30.
At least one of my conditions is considered "rare" at this point in time, and knowledge about it is severely lacking, even among medical professionals. When I've gone searching for information or support, or accounts from other patients, I've found very little, and what does exist is mostly inside of Facebook groups. Firsthand accounts outside of comments on FB are very hard to find.
By talking about my conditions, I aim to do two things: one, help destigmatize the reality of living with an illness or disability, along with answering some frequently asked questions about my, uh, lifestyle? I guess? And two, to help increase the amount of knowlege out there about MALS, and what it's actually like to live with, because what I've found out there has been woefully lacking.
One of the most common reactions I see, when someone learns I can't do a thing, is for them to throw up thier hands and say something like, "But you're too young!" Or, "I'm (many years) older than you and I don't even have that problem yet!" Or, "If I ever couldn't do XYZ, I'd just kill myself!" Or, sometimes even a variation of, "Try harder!"
25% of the American population is disabled-- or one in four! (19% of whom have jobs.) Half of disabled people are under 65, and you are far more likely to be disabled if you’re part of an underprivileged demographic, and especially if you are poor.
My disorder may be rare, but having a disability is exceedingly common, much moreso than most believe- yes, even as a young person (again; HALF of disabled people are under 65). Likewise, something that's utterly disabling to one individual may be comparitively mild in another person; every single body is different, every life is different, and pathologies can appear inside the human body- just as human bodies do- with ample variation.
For example, some folks are fully blind and their vision cannot be corrected with lenses; yet, anyone with vision less than 20/20 is legally considered blind. I need lenses with -5.25 strength to be able to see my computer screen; without my lenses, I can't use a computer/phone, read, drive, or recognize faces. (If 20/20 is perfect vision, imagine what -5/-4 is like!)
In this day and age, my lack of sight isn't necessarily disabling on it's own, but it's easy to imagine how it COULD be: in other people with more severe vision loss, for someone with identical vision loss who simply can't afford lenses*, or even for people who need to see clearer details/distances for their work...
...And this is true of ANY condition. We may not be able to quantify conditions like autism, trauma, ADHD or POTS with numbers, but they can and do exist in different bodies at different severities, and present with different configurations of symptoms.
*Did you ever have to pay to use your own eyeballs, Stacy??? Because I do on a regular basis! I have to pay a freaking subscription fee to use my own organs that I was born with and grew myself!!! Cyberpunk is already here for disabled people and it FUCKING SUCKS!!!!
We all understand that, despite our bodies being made of the same fundamental pieces, the variation in each piece is what makes us individual; in fact, we often say it makes us UNIQUE as a result. This is as true of our pathologies as it is of our appearances! If your nose can be shaped enough like a nose for it to be recognizable BOTH as a nose and as your father's, why can't disease have the same leeway for variation? Just as you can have a unique nose, or overall appearance, and still be recognized as a human person, so too our conditions can be wildly different, perhaps even unique, and still be recognizable as those same conditions.**
Fundamentally, I think these misunderstandings boil down to something simple: fear. Abled people fear disability the same way they fear aging and death, and the same way we all fear unknowable changes. The thought of you- or worse, a loved one- experiencing never-ending pain is a torturous thought. And yet we bring so much more pain on ourselves and others by denying the very possibility.
"The only disability is a bad attitude" is a phrase that I personally think has done irreparable damage to the English lexicon, and to the human psyche. It should have perpetuated the idea that you can continue to live your life in any way that works for you; NOT that you can do anything just the same as any other person. And make no mistake, that is how it is used, no matter your own personal philosophy.
Every day, this phrase is leveraged at disabled people who can't care for all of our own needs, whose requests for help are seen as burdensome. I heard it often when I first got ill and was struggling to maintain multiple jobs at once. To you it may sound inspirational; to someone who is very actually disabled, it's a thinly veiled way of saying "your misfortune is your own fault," or even, "you deserve this." It implies that if you had a better attitude, if you had made better choices, if only you were trying harder, then you wouldn't be "disabled" by your condition- merely "differently abled" :)
It's often paired with "inspiration porn," or similar poorly drawn comparisons to others who "overcame their adversity" and "succeeded," or otherwise went on to perform amazing feats, like running a marathon with prosthetics, or whatever. Inspiration porn is a subject that could have it's own separate page; but to draw comparisons between ANY two disabled people, regardless of who they are to you, is pointless malice as far as I'm concerned.
"If X can do it, why can't you?" is a ridiculous and horribly cruel thing to ask someone. Anyone. Well, Michael Phelps is abled just like you, and if the ONLY DISABILITY IN LIFE is a bad attitude, why aren't YOU swimming like a madman? Hm? You must have a shit attitude! Do you have a better excuse? "I'm not even a swimmer" doesn't count. There are NO DISABILITIES IN LIFE, and YOU CAN DO ANYTHING YOU PUT YOUR MIND TO, remember?!? You COULD BE a swimmer! You COULD BE JUST LIKE MICHAEL PHELPS! *LITERALLY NOTHING* IS STOPPING YOU! ANYTHING IS POSSIBLE! Are you inspired yet??? Why aren't you swimming already????
THAT'S the kind of standard you are holding disabled people to with these comments, literally comparing us to people with physiologies (and access to resources!) that we simply don't have. It's absurd. Why can't this fish ride a bicycle? Wow... Riding a bike is so easy when you have legs, though? This fish must be lazy! Pathetic. That's what y'all sound like when you keep recommending me jobs btw.
Alongside this, we are constantly told by well-meaning abled people "not to call yourself that," to "think positive" and not use "negative" terms like "disabled." Which is actually such a selfish thing to say.
Both of these express toxic positivity at it's finest; that is, "positivity" that comes at the expense of reality. Disabled is a fantastic term, and the community prefers it by a wide margin. We are disabled. It's clear, it's practical, it's to the point. YOU are made uncomfortable by a word that works quite well for my purposes, and so you ask me not to use it for your comfort, but under the guise of mine. All while actually ignoring my comfort entirely, and while presenting me with the concept that my disability is a choice, that using a practical word to describe myself denotes nothing more than an attention-seeking victim mentality, that disability is an attitude, a mere incorrect state of mind that I am CHOOSING to exist within.
We hear this shit from our abled loved ones day in and day out; you beg of us to deny the reality of our existence. You beg us to hide it, to act normal. And you tell us, "Oh but it's only because I don't like to see you hurting." But YOU are hurting me additionally when you refuse to examine your words, when you use them this way, and especially when you demand that we mask our symptoms. No matter how much love is behind your intentions, these phrases come inherent with so much judgement and dismissal and, perhaps most of all, blame.
When WE hear you say these things like, "The only disability..." it sounds less like, "Go get 'em, tiger! I believe in you!" and a lot more like, "Why are you wallowing? Even an idiot could figure this out. You're doing this to yourself." (And in plenty of unfortunate, but very real, cases, we are told outright that we ARE doing this to ourselves/making it up/etc.)
Even if some people among us are lucky enough to live their whole lives and/or die before any lasting damage occurs... surely you know more than 4 people? We live in a society; it behooves and enriches us all to familiarize ourselves with the experiences of others.
On this page I'm going to discuss some of my conditions (and what makes them disabling to me), as well as some wider concepts about disability justice (such as the aforementioned issues of "toxic positivity" and "inspiration porn").
In addition to answering questions and raising awareness, I want readers of this page to walk away questioning what you think you know about disability, and how vastly different our bodies can be- especially those of you who have never questioned as such before.
So, if you are someone who knows me and have ever had questions about my weird conditions, you’ve found yourself in the right place! If you are just some random internet stranger moseying on through, welcome! The more the merrier. On this page I am going to focus on just a few primary diagnoses I'm working with, as these are the conditions causing the worst of my issues.
Please do feel free to get in touch with me if you find yourself with more questions, or if you find any errors/broken links. Right now my page is heavily under construction but eventually I will have some contact links here, like an email/cbox link, maybe also get a guestbook/comments thing.
POTS is a dysautonomic disorder that looks like a cardiovascular problem. "Dysautonomia" is relating to the autonomic nervous system (ANS). Blood pressure and heart rate are just some of the things your ANS usually controls-- as the name suggests-- autonomously, without having to think about it.
In dysautonomic conditions like POTS, your ANS doesn't work right, so these automatic processes (circulation and heart rate, breathing, body temperature, digestion, etc) are NOT properly regulated. This manifests in a lot of different ways, but primarily with changes in posture. Have you ever stood up too fast and accidentally seen into the 5th dimension? That happens to me every time I sit or stand up! Blood pressure don't work right.
I actually think this bit from the Liquid IV website says it better than I could:
So, it turns out your whole body needs blood all of the time, and not just some parts of the body some of the time. Ah. Damn.
In many fewer words, POTS means that whenever I'm upright, my brain isn't getting enough blood, and I pass out a lot. Among other things.
POTS is characterized by a 30+ jump in heart rate upon standing. (Because your blood pressure isn't adjusting for gravity, your heart rate increases to compensate, and then beats TOO fast, and you lose consciousness.) Being upright at ALL- even just in a chair- will keep my heart rate over 100bpm for hours on end. My heart rate frequently tops 150 when simply climbing the stairs. I've passed out from merely standing at the sink.
Jessica Kellgren-Fozard explains it really well, too, in this video about how much time she spends on the floor (12m). Sorry, I'm still learning how to properly embed YouTube videos, this wasn't a thing when I first started coding.
Aside from blackouts, my worst symptoms from POTS are fatigue, nausea, chronic pain, brain fog, temperature regulation issues, and tachycardia. I can spend a couple of hours upright (working on something or driving, for example) but after a certain point I become too fatigued and mentally foggy to concentrate, and I have to go lie down. Lying down is the #1 best way to fight POTS, plain and simple.
As mentioned in Jessica's video, POTS is related to the flight-or-fight response. Vasovagal presyncope (or passing out from getting "excited") is also a thing. I don't even have to stand up too fast or overexert myself; I can literally just get worked up emotionally and make my heart rate spike to blackout inducing levels, like a damn fainting goat. ️
The #1 first response for my POTS related issues, verified by my cardiologist? GET HORIZONTAL. Your brain needs oxygen. It gets that through your blood. If I'm starting to really drag ass, 9/10 times it's just because I've been upright too long, and I need to put the blood back in my head (i.e. lie down for about 20 mins).
#2 is WATER and SALT INTAKE. I drink 2-3L of (salted) water per day MINIMUM, this does not include other beverages I consume. Something like 80% of your fluid intake should be electrolyte solutions. POTS patients need VASTLY more sodium than the average human; my cardiologist told me I need 8 to 12 grams of sodium PER DAY for my own case. I also drink Liquid IVs and eat salty snacks.
Staying on top of food & water intake has a BIG impact on POTS; when I eat less, my blood sugar and sodium levels get so fucked up so quickly, it only takes me a few hours of having not eaten to severely deteriorate.
#3 is COMMUNITY. I should probably actually put this as #1, because everything I learned about POTS came from other POTSies and never from a doctor. But if you are new to this awareness of your condition and you need resources, FIND PEOPLE who are talking about it! Check out Dysautonomia International and their resources, join a Facebook group or a forum, find POTS bloggers or youtubers or tiktokkers to follow, find the folks making zines on Instagram, or if you're still on twitter (RIP) there are hashtags like #NEISvoid for talking about life with chronic problems.
Talking to other people with your condition will give you a MUCH more well-rounded view of what it can look like, and more importantly, how you can adjust to living with it. Despite all their knowledge, doctors do not usually have to live with the realities of the things they treat, and they have lots of "blind spots" about it as a result. They can't tell you how to comfortably deal with a dysauto crash in your own home; other POTSies can. I just simply cannot overstate how much you can gain from talking to other patients. It is crucial, I would not be surviving without the help of other chronically ill folks and everything they share.
#4 is REGIMEN. There are more exercise regimens and modes of physical therapy coming out for POTS lately, such as the CHOP protocol, which utilizes an extremely graded scale of activity beginning with reclined exercises. (Being upright and standing still is worse than being upright and moving- your legs can act as a 2nd heart and pump blood back up to your head, as long as they are moving.)
Again, this is how I prioritize my own care. But do check out Dysautonomia International if you have any more digging to do about POTS and dysautonomia in general. There are TONS of resources there.
I have had problems with my stomach since I was 9 years old. When I was 21, I started vomiting every day for almost a year, and wound up in the ER several times. For 10 years no one could find anything; I was told repeatedly "It's just anxiety" or "It's IBS." Blood tests, endoscopies, colonoscopies, gastric emptying scans-- they all came back with normal results.
Because the issue isn't my stomach.
The issue is the blood flow to my stomach.
MALS is a vascular compression that mimics a GI syndrome; my abdominal organs do not receive enough blood. In MALS anatomies, the median arcuate ligament is not located where it should be, pinching the nerves and vessels at the celiac artery below it. My own arteries showed > 70% stenosis on my celiac doppler ultrasounds at the time of diagnosis (Spring 2022).
MALS is without a doubt the most disabling problem that I have, and it's scope and severity were grossly undersold to me by the doctors who diagnosed me with it.
MALS is constant pain. Constant, never-ending, always-present pain and nausea. MALS is spending every waking moment catering to my stomach, and winding up in the ER routinely when I can't; doing everything from constantly adjusting my posture to sipping applesauce through a straw to actively fighting down the urge to vomit for hours on end. It's taking snacks, electrolytes, and a barf bucket with me everywhere I ever go, needing a bag of supplies like a baby would, just to meet up with friends for a bit.
We get what we call "MALS attacks." When it happens, my stomach & other organs aren't getting enough blood to perform their functions. Effectively a heart attack of the stomach. It is exceedingly, maddeningly painful, usually manifesting as unstoppable vomiting for hours (or sometimes days) on end, not even being able to keep water down; as well as painful, sharp muscle spasms all around the abdomen and stomach, and often the same headache that comes after eating.
MALS is spending an hour in the kitchen trying to choke down one bite of food before having an earth-shattering panic attack, because I am so fucking hungry and my body will physically not accept food.
Even on good days, MALS is sitting in the kitchen for hours by myself, taking small, infrequent bites, spending more time fighting nausea than tasting my food. MALS is starving of hunger, feeling my body waste away, craving the foods that used to comfort me beyond measure, desperate for anything to stay down. MALS is barely managing a few bites and still getting such a roaring headache afterwards that I have to sleep it off until the next attempt at eating.
Due to the pain and issues with fully digesting things, I am almost never able to eat until I'm sated. I can only eat until the pain outweighs the hunger. A vast majority of my meals only contain a few hundred calories or less, so I eat a bit like a baby bird, taking a few mouthfuls every few hours. If I don't, the hunger catches up fast.
Despite the pain, if I skip meals, I'm far worse off-- the lack of nutrients ultimately makes the POTS worse, and all of my symptoms get more severe. If I skip even one meal, I am vastly more likely to pass out, or injure myself doing something mundane due to weakness.
Plenty of complications can arise from this (not least of all due to the obvious malnutrition, nor the psychological effects). Our vascular systems are complex, and one compression like this often comes with others throughout the body. There's nerve damage from the misplaced ligament (often one of the causes of pain). Chronic lack of blood to the organs and extremeties, as well as pooling, can cause complications of their own (least severe of all, chronic pain). In the MALS groups I've joined, I've heard accounts of fellow members experiencing edema or even aneurysms as a complication of MALS.
Most doctors will tell you this condition is "benign," that it "shouldn't bother you." The very same doctor who diagnosed me told me just three months later that my pain was "too severe" to be MALS and must be something else. (Yeah idek. That one has my other doctors scratching their heads, even.)
If you spend just 1 minute in any MALS support group, you'll hear a vastly different story from the patient side: that MALS is horrifically, indescribably painful, that it is complex and hard to manage, that it has taken our lives away from so many of us.
Surgery is the only way to correct the MALS, as the compression is a structural issue. However.
MALS is poorly understood. Because of it's complex and obscure nature, most doctors are unwilling to treat it. And among those who are willing, there are many who dismiss or don't understand the related complications. For example, your surgeon may perform the MALS release, but not address nerve damage and scarring; they may release the MALS but ignore other compressions in your vascular system, like SMAS; or, worse yet, they may perform the release, have it be "successful" (i.e. your blood flow to normal), but now for some unknown reason, the pain never goes away.
As such, surgery isn't necessarily a magical fix, but a vast majority of the MALS patients who get it seem very glad they did. Many say it 'gave them their life back.'
That said, it's not ideal to wait, either. Ignoring this compression can cause lots of other medical complications down the road. But with the lack of availability and access wrt MALS doctors, some of us are left with no other choice but to try and find effective pain management on our own, as doctors are overwhelmingly not providing this for us.
My own told me it was ok to smoke weed, though, and going by patient accounts, it does seem like cannabis is one of the more effective treatments.
(I also find that POTS and MALS play off of each other quite a lot, so sometimes treating the POTS helps the MALS. Like, if I drink my liquid IV and improve my blood volume a bit, sometimes that actually helps me eat. So there's that.)
Still, many MALS patients end up on a feeding tube when they run out of pain management options.
I have been managing my MALS with thc for the last 8 years or so and I am absolutely certain that I would have already wound up on a feeding tube without it. It's efficacy is starting to wane, but I find that switching methods (between vape / herb / RSO for example) or switching strains does sometimes help. Likewise, a higher CBD/CBN ratio is always better, even 20:1 (though CBD without any THC is useless to me).
I also take omeprazole (keeping reflux in check helps the pain), and take a low dose of amitriptyline for sleep which purportedly helps stomach/nerve pain. I have had a slightly better time eating since starting, but it's hard to say if it's actually helping the pain.
A: "Because we are separate people with different bodies and wildly varied life circumstances," primarily. FYI infants typically start to learn they are separate from other people around 7-9 months old, so maybe jot that down.
ykw. my acquaintances who came from wealthier families and who didn't struggle with housing insecurity, feeding themselves, or keeping their insurance, are the same ones who finished school and developed careers even in the face of their own disabilities... I wonder if that could be related... Hmm...
A:
Listen, I've had about 20 different jobs since I started working at age 15. Sometimes I worked 2 or 3 at once. I have several manners of retail and food service. I have been a janitor. I have worked in an office. Most recently, I did transcripts, freelancing from home as an independent contractor; that was the perfect job, one where I could lie down whenever I wanted and was beholden to no one, and I liked it! and I was SUPER good at it! and it SHOULD have been the thing that sustained me. and I couldn't keep up with that one, either.
The truth is I LIKE working. If the physical pain I'm in was the ONLY barrier I faced to working, I still would be. You can work at weed stores here, for fuck's sake? Why would I not be doing that? smdh. There's also a mushroom factory near here, I bet fascinating stuff goes on in there. I've even fantasized about being a carny, or a sailor on a big freighter, or some other objectively awful terrifying and/or gross job, just for the thrill of imagining a universe where my body could handle it. I WANT to have the satisfaction of a job. I LIKE to do a good job. It feels good to have income, even if none is expendable.
NO ONE has their pick of jobs right now. Coming into that situation with additional stipulations you need met in order to be an employee? That is a fantasy. And that's without delving into the awkward phase of my gender transition that I'm in, lol.
tl;dr YES. I have tried, and that includes all the ~work from home job listings~ you're about to send me from Pennyhoarder.
A: Yeah I actually have. FYI Dieting is a Touchy Subject for me and I prefer to avoid it, so this is probably the only place I'll talk about this.
I actually have tried various diets, and yet, multiple doctors & specialists have confirmed that my diet- and in my fact my STOMACH ITSELF- is not the issue. I don't even have any allergies or food sensitivies, and I am not prediabetic.
Sticking to a strict diet has little effect besides making me eat less, when trying to get more than 500 calories a day in is already a monumental struggle for me so much of the time. MALS restricts my diet already; any diet Further restricting my limited food intake would be dangerous to my health.
While diet changes may be beneficial to others with related comorbidities, I have personally found that, in my case, quantity over quality matters.
any food you WILL eat is better for you, & contains more nutrients, than any food you don't (or can't) eat.
A: So it IS worth mentioning that stress does affect our physiology. I know better than anyone what pushing past your limits and working through burnout does and I can assure you, it won't win you any marathons. There is definitely something to be said for paying close attention to your body, to where you hold your stress, to what symptoms you experience, to how you stop taking care of yourself when you're preoccupied.
And yes, I have also done my fair share of mental health treatment along with trying to address the physical. However, I've also spent MANY years negotiating with and understanding my neuroses, and I've become very familiar with my body- and stress patterns- as a result. I know the difference between "anxiety tummy troubles" and "being in danger."
I could just keep making more of these and have more than 1. or I cold make the whole page into oen. idk yet