Malaena Medford
Author
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About My Illnesses
First and foremost, I am not looking for sympathy, so do not burden me with apologies or assume I am a fragile glass menagerie...even if I am... It just makes me mad when people act like I will break if they breathe too hard. Also, do not troll me with 'attention seeker' fluff, because I've been hiding in the shadows this whole time to avoid attention. I made my website to promote my work. This page is specifically aimed at awareness of certain disorders. I am not the only one who suffers with them, and it would benefit people like myself if the public was better educated on rare conditions.
I do appreciate the concern some individuals express, but really, I have lived in this body for such a long time that I can handle it by now.
Please respect my feelings, and thank you for your interest!
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Take a look! This is very informative for everyone who uses the Internet, but especially autisticats!
Autism Spectrum or Neurodivergence (verbal)
Autism is a difference in brain structure setting them apart from neurotypicals, usually accompanied by excessively logical and often highly intelligent individuals; think of human calculators and those people who can draw an entire landscape from memory. Some on the spectrum are non-verbal and wholly low-functioning, but individuals who are considered functional tend to range in how functional they are on any given day throughout their life. It is not a rare condition. There are now many of us fighting against those who would use authority to torture our kind. Many autistics commit suicide every year from a psychological torture method called Applied Behavioral Analysis, something banned from use in homosexuals for the exact same reason, yet the courts say autistics need it?
Ever had someone tell you that you don't belong? That you are worthless? That your mere existence is worse than death? I have. It really sucks.
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Telling us not to stim, and effectively not letting us calm ourselves down the only way that works, is torture. It's abusive. Forcing us to look in people's eyes is abusive, because it's overwhelming and causes physical pain in a good number of us. Making us "not act autistic" is wrong. This behavior therapy only creates countless societally inept adults who hate humans.
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There is another therapy dedicated to helping autistics form routines and skills which will help them function better as adults, usually honing a skill they already show aptitude in.
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"Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.
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A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. These conditions are now all called autism spectrum disorder." ~Centers for Disease Control~
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I am first going to point out that autism is not a disorder. Society is a disorder which treats neurodivergent people like a disease. In other societies, such as Japan, people who clearly fall under the autism diagnosis in behaviors are thought of as eccentric, and often encouraged to be as weird as possible to stimulate their potential. They excel in their chosen field and are praised for it. Their odd quirks are thought of as cute but no one punishes them for being themselves.
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Second, it is often a misconception that those with autism can function in a "normal" society and behave just like other people. This is very frustrating to people like me because we often cannot function within the bounds of society and attempting to do so causes major stress and meltdowns. Furthering our plight is that because of this misinformation on our capabilities, we often don't get the help we need because people aren't concerned that we might not be able to do what they assume we should be able to do. Gifted people are special needs people.
When I hear of parents breaking down over a positive diagnosis for their child, it really tears me apart. How would they feel if I thought that being born neurotypical made them into some kind of disgusting, abominable monster? Something which brought about the downfall of society and caused irreversible damage to the entire world? A fate worse than death! That's how I feel when people call my condition 'horrible' and then use terms like 'retard' and 'freak' in a rude manner. I am not mentally handicapped, I am socially handicapped because social standards are a bunch of garbage with ridiculous expectations of a drone-based hive mind mentality. I am, however, a freak. I'm a proud freak, and it is who I am. Freak shows have some of the most awesome people I've ever met on this planet, and they even asked if they could keep me. I will not cause the destruction of the universe just because I was born with a brain different than neurotypicals, and neither will those children of the parents having an absolute cow.
Just know it is a struggle to raise an autistic child, but it doesn't mean you were handed damaged goods, you were handed a gemstone in the rough. Polish it gently and with its own grain, do not try to grind it into what society believes is acceptable. That causes lifelong trauma.
It's your job to carve it into something beautiful and special.
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NOTE: Asperger's Syndrome was once used as the diagnostic term of my specific type of autism, but has since been dropped because of the clear NAZI activity of Hans Asperger and euthanasia of disabled children. A bit horrifying, that.
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While I do not use that specific term, I still like Aspie-cat and can think of a way to make it not associated with that man:
Autism Spectrum Person with Intellectual and Emotional Complications and Atypical Tendencies = Aspiecat :)
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People are highly encouraged to use the new term, though: Autisticat!
Bit of an explanation: we act a lot like cats.
Like, seriously, we even like being petted by someone we are familiar with and enjoy being caressed behind our ears...
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***Read the link below to learn more about autism***
Porphyria
I want to start this part off by saying: it sucks. It really, truly sucks. Life hiding from light with everyone around asking 'why can't you just pretend to be normal?' is hell. I have had many porphyric attacks because I tried to please people by just trying to 'act normal'. This almost caused my death several times.
I cannot go in sunlight or bright lights as it can make me violently ill or even cause death. I would have to be tested for which specific type in a lab, which is highly expensive and currently not a possibility.
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Feeling as though the only way away from the pain is to end my life is not something I enjoy living with, but I have a supportive family who had to learn about the disorder with me. People who meet me for the first time must understand that this is incurable, painful, and that they have to work with me on my own terms because I can die from any number of 'normal' activities that other people can do.
I was originally self-diagnosed. My mother kept trying to get the doctors to realize there was something seriously wrong, and I was in turn accused of being a hypochondriac who was causing self-harm for attention. My mother knew better because I hated attention and doctors. Further, she knew that the symptoms were genuine, and eventually caught on to the fact that they were happening regularly when I would go out in sunlight. I was around 14 years old when she suggested I stop going in the light as much as possible to see what would happen, and we were astonished to find that it really did help with my symptoms.
The most obvious symptoms I have that gave me the direction to find out what was wrong with me via different medical texts on the Internet was purple sweat--more of a brick red to rusty brown in color, blistering and rashy skin when exposed to light over 40-60 watts, excruciating abdominal pain, neurological manifestations in both my brain and muscles, and progressive neuropathy--extensive nerve damage which causes intense pain. From there, I found out the enormity of the disorder and just how many of my disorders that were 'in my head' (according to my former physician) were linked directly to this and my other illnesses. (I inwardly squealed when I found out it was one problem and not a thousand different ones.)
The symptoms I have experienced fall under the acute porphyrias--these include:
1.) acute intermittent porphyria
2.) variegate porphyria
3.) hereditary coproporphyria
4.) ALAD-Deficiency Porphyria
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As the photosensitivity is not present in AIP, the type was narrowed down as years went by. ALAD type is extremely rare and all the cases found were males, so this is probably not a possibility. The closest in symptoms is HCP, because even my family members have certain traits of sun sensitivity. None of them have my severity. Hooray...
I don't mind the darkness. I actually love dark conditions--this may be due to the disorder but who cares.
What I do not like are the physical complications affecting both brain and organs, chronic pain in every inch of my body, advanced neuropathy, dysautonomia, sweat and fluids which cause chemical burns on my skin if not washed off every bathroom break, chemical burning to my eyes with sweat much like pepper spray, random blisters forming in really uncomfortable places (ever tried doing physical work with a red hot knitting needle stabbing into your armpit?), and excruciating pain when my eyes are exposed to light above 40 watts, among other things. The most annoying thing about this is waking up every morning feeling as if I have a hangover, feeling sick and nauseated, and unable to do anything about it for 30 mins to two hours because if I get up too fast I will feel extremely ill and even pass out or fall over and hurt myself. These symptoms have become more manageable and lessened on a specific dietary change that took me five years to fully transition to. It was first the ketogenic lifestyle which saved my life, and Carnivore which balanced my entire body.
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...Well, as much as you can balance a frothing pile of screaming cats.
What could be worse than my disorder? People telling me to get over it because they can be 'normal', so therefore I should just suck it up and do it like every other person can.
I am me. I am not you. I can't. Kindly get over yourselves.
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A gift for my people of the darkness:
http://www.uvskinz.com/
Remember to use vitamin D3 drops and ingest some cod liver oil.
I recommend rubbing the D3 on the skin, as it is the natural way your body makes and absorbs it, in the first place. D3 made without soy oil is safer because soy is very bad for the body.
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<I have a site just for health, Grove of Wisdom, but it's still in the works so be patient. The more misinformation I run into has been increasing my knowledge on actual nutrition backed by real science.>
!!! NOTE !!!
Please, please, PLEASE, always remember to work with your physician when making a change in your diet and lifestyle. Anything can affect your porphyria, and anything can cause a fatal or permanently debilitating attack. The American Porphyria Foundation can provide you with a list of drugs that are safe but the eating plan is from a source which I think is questionable. Low-fat diets are ridiculous and dangerous. I have trained as a nutrition specialist and my site I mentioned is cumulative knowledge and real-life experience.
I was previously on a high-fat, low-carb diet within the ketogenic spectrum. I am now on the Carnivore lifestyle, which has made life easier but not done anything to improve light sensitivity. I consume copious amounts of raw organ meats and fatty steak, fish, egg yolks, butter, full-fat fermented goat dairy like cheeses and heavy cream--I have a sensitivity to cow dairy and had to give that up. I lost 55 lbs in the first four months without lifting a finger, but only got off refined carbs at first, and have lost about 200 lbs to date and manage porphyria better after seven years, now. Nutrition is key to a more comfortable porphyric.
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The reason this works is because porphyria causes muscle and neurological seizures, and ketogenic prevents seizures of all types. More science is revealing this diet to be a way to manage many diseases and disorders. Do not dive into it fast, that can kill you if you have porphyria. Seven years, lovelies. Seven.
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There is no cure for the skin problems. I avoid light.
There is no cure for genetic defects, period.
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***Read the link below to learn more about porphyria***
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^^These pictures above are of me.
The first is what happens when a severe porphyric with skin reactions to light goes out in cloudy weather. Clouds and most fabrics do not block sunlight AT ALL. The second and third are from light reflected off bright surfaces--yes, that's a thing. The last is the start of a rash spread with a skin lesion. My skin splits open during this and it's really painful.
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Below is a side-by-side comparison with an enhanced contrast to give a better idea of how it feels; this is pain. A short visit to the supermarket caused this. I had my face uncovered under a hooded jacket and found out even store lights are a huge problem.
<--This is NOT my arm, just in case anyone was curious. I have had this happen, though.
This is my sunsuit. It is all UV-proof and blocks visible light as well.
Ehlers-Danlos Syndrome (EDS)
EDS, in a nutshell, is a game of musical chairs with kindergartners with ADHD. You pretty much have to start guessing which bones will be 'out of their seat', so to speak, and you can count on them NEVER cooperating.
It has its good sides, though. I was hit and run over by a car when I was 14 years old, managed to break the guy's headlight and escaped death with tire tracks across my chest and legs. The accident caused permanent scarring on one finger, which is minor, and a permanent dent in my leg, which is also minor. Because of my extra-super dense bones (unrelated to EDS), I didn't break anything but my pride--well, and the guy's headlight and passenger side door with my head. My anomaly of a body confused the living heck out of the radiologist, which made him chew out the rad techs and proceed to make them take new x-rays. The results were, of course, identical to the last, so he came out and examined the red tire track marks in my skin, examined my leg and hand, then went back and looked over the images once more. The man looked like he'd just met a mutant from X-Men as he politely informed me that I should be dead, but for all they could tell I was just a little bumped and bruised.
(The look on his face, in person, was hilarious. I get that reaction a lot because I'm a medical anomaly, apparently.)
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I never thought for one moment that my apparent indestructible nature was because of a debilitating physical disability. So, like my mother always says, some curses could be blessings in disguise.
The downside is the chronic pain, the fatigue, the loose ligaments making physical activity and standing a major task, dysautonomia which is also linked to this disorder, hypermobility in joints causing constant dislocation of bones including the oh-so-fun floating rib disorder, severe lower back pain, and other things I really don't need in my life. It could be much worse, though. Some of the other EDS forms are terrifying.
On the bright side, I can put all my dislocated joints back in socket without assistance, physician or otherwise, and it makes yoga a breeze.
"Ehlers-Danlos Syndrome affects connective tissue, primarily the skin, joints, and blood vessel walls. Symptoms include overly flexible joints that can dislocate, and skin that's translucent, elastic, and bruises easily. In some cases, there may be dilation and even rupture of major blood vessels." ~ Some random site
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Bonus addition:
postural orthostatic tachycardia syndrome
As if EDS wasn't actually that bad, it's usually accompanied by a syndrome generally referred to as POTS. POTS is a form of dysautonomia. It affects the autonomic nervous system. Normal functions like sitting or standing fail to signal the blood vessels to constrict. The result is blood pooling in the legs and not going back to the heart or brain, which is kind of important, ya know?
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The resulting problems are things like dizziness, shortness of breath, severe fatigue, rapid heartbeat, low blood pressure problems, and this can result in death under some circumstances. Constant movement and standing is not a good idea. Sports are a definite no. Salt restriction is a death sentence. I eat pink Himalayan salt to help control this. It's like putting a band-aid on an amputated leg...
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A gift for those with loose joints:
!!! NOTE !!!
Always remember to consult your physician when purchasing braces. You could get them for cheap or free and you will be able to work with your condition without aggravating it! Doing this yourself can result in injury!
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***Read the link below to learn more about Ehlers-Danlos***
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One of the downsides of having EDS is the muscle atrophy for some of us. Nothing will fix this. I am pressed to increased calories, eat whey protein, and other such things, which do not work. I'm just smol. That's how it is for me.
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This is me as of 2020
Hypertrichosis
I was once under the belief that my hypertrichosis was attributed to my porphyria, but it's not a symptom of the acute porphyrias in the sense of hirsutism, which is male-pattern type--that is what I symptomatically have. Therefore, I'm just a fuzzy.
Hypertrichosis or hirsutism is a disorder of excessive hair growth, with hirsutism as a male-pattern hair growth, with no singular cause. It can be hereditary as seen in some of the cases of 'wolf people' or it can be a random genetic mutation in a single individual with no association to any other disorder they may have. In my case, I don't know the cause, but I'll get on that with my doctor and update this section if I happen to figure out what's causing this fun little oddity.
A man with hypertrichosis can be overlooked because men are supposed to grow lots of hair, and in some cases have excessive hair. This is not seen as particularly strange. It is when this disorder is present in a female that it is noticed. A woman walking around sporting a beard is not something most people will encounter, let alone accept. I was always given nicknames like 'wolf lady', 'wolf girl', 'sideburns', and other pokes at my hairiness. To be honest, I didn't care. Werewolves are cool. The children at school were cruel to begin with because I have autism, but as I grew older I became fuzzier, and this just made things worse. I tried shaving, but it's painful. I develop severe blisters, ingrown hairs with dime-sized pustules, and overly painful sensitivity to touch. I can't handle the feeling of my body being hairless, either. My autism makes any physical sensation become overwhelming, and removing my hair changes the way I feel the world, so I stopped caring what other people think and I do not shave anything.
This particular disorder does not cause debilitating pain, mental abnormalities, or obstacles in living a normal life. The only thing it brings on is social stigmas against women with hair in places other than their scalp, eyebrows, and eyelashes (heaven forbid a woman has armpit or pubic hair! Gross!). I do not 'suffer' from this disorder in any way, and it doesn't hinder my ability to do anything as the other three disorders do.
I met a lovely lady named Jessa the Bearded Lady from the Venice Beach Freakshow and she is an absolute doll. I love her to pieces. She has hypertrichosis that is extremely similar to mine only on her face, but from a disorder she has causing premature menopause. I do not have that disorder. She has joint problems and physical pain, as well, and is seen regularly with a crutch or cane. She is a beautiful individual.
I highly recommend visiting the Venice Beach Freakshow when they open back up! They look like they are trying! (Here's their Facebook.)
This is me in all my fuzzy glory. I don't know why I have this, yet, if I ever find out. Picture on the bottom is the most recent.
Two examples of hypertrichosis, first one is a hereditary syndrome, the second is an unknown and probably just genetic mutation in that individual.
Assorted conditions (links included):
Depression
Disaccharidase enzyme deficiency (can't digest carbs correctly)
Hypersensitivity of every sense
Hypermobility of joints/Loose joints
Dysautonomia (postural orthostatic tachycardia syndrome; POTS)
Weakness of bladder and other excretory systems
Vitamin Deficiencies Exacerbation (search for vitamin)
Atrial fibrillation (unconfirmed)
Dysautonomia (postural orthostatic tachycardia syndrome; POTS)
Gastrointestinal complications
Intestinal ruptures and hemorrhaging
Minor septic infection - meds unnecessary
Cutaneous (skin) hypersensitivity to light
Pain from intense spectrum temperature change
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Most of my disorders, which look like a lot, are actually just symptoms of porphyria, autism, and EDS, so I actually have few disorders, it's just that they're horrid and I do not want them--maybe the EDS, because it's more of a superpower with pain involved. The autism is actually a boon and curse, too.
With all these lovely symptoms, pain medication does not work on me. Lovely. I can tell you how much I loathe taking pills that make my head float but leave the pain to simmer, but I would begin ranting and we don't need that.
I use forearm crutches to assist with walking, because the pain from physical activity and the exertion just to keep my spine, shoulders, and legs in alignment is torture. My arms have an easier time holding my body up with my legs as a prop to keep from falling when I walk. I am determined to keep out of a wheelchair as long as I possibly can. I have also been using different braces for my joints to keep them aligned, and it's actually helping a lot. People seem concerned, so I have to remind them that I am a broken person, so I need something to keep me together on occasion.
Autism
Porphyria
rarediseases.org
porphyriafoundation.org
HCP specifically(I'll be updating this)
Ehlers-Danlos syndrome
Hypertrichosis