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. 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!
Asperger's syndrome or Asperger's autism is a high-functioning developmental disorder on the autism spectrum. It is not a rare condition.
"It is a development disability that is often marked by exceptional intelligence in a few specific areas, difficultly[sic] in appropriately expressing empathy for others, an inability to innately understand how to read non-verbal cues, and difficultly or awkwardness in communicating with other people in social situations." ~site below~
It is often a misconception that those with this disorder 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.
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 like them made them into some kind of disgusting, abominable monster? Something which brought about the downfall of my parent's own lives and caused irreversible damage to their entire world? That's how I feel when people call my condition 'horrible' and then use terms like 'retard' and 'freak'. I am a freak. I'm a proud freak, and it is who I am. I will not cause the destruction of the universe just because I was born with a brain significantly 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 diamond in the rough.
It's your job to carve it down into something beautiful and special.
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 attacks because I tried to please people by just trying to 'act normal'. This almost caused my death.
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 it in a lab, which is highly expensive and currently not a possibility.
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, and excruciating abdominal pain accompanied by migraine aura without pain and progressive neuropathy. 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.
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
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.
I don't mind the darkness, and 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 60 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 5 years to fully transition to.
What could be worse than that? 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.
A gift for my people of the darkness:
<I will have a site just for health up soon. D3 made without soy oil is safer because soy is a highly toxic substance. 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 as well as an eating plan from a source which I think is questionable. Low-fat diets are ridiculous and dangerous.
I'm on a high-fat, low-carb diet within the Ketogenic spectrum. I consume plenty of raw or cooked organ meats, fish, egg yolks, butter, full-fat dairy, and some muscle meats. I lost 55 lbs in the first four months without lifting a finger, and have lost lost 125 lbs to date and manage porphyria better. Nutrition is key to a more comfortable porphyric.
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.
There is no cure for the skin problems. I avoid light.
^^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 is minor rashing and burns from a visit to the supermarket. I had my face uncovered under a hooded jacket and found out even store lights are a huge problem.
Below is a side-by-side comparison with an enhanced contrast to give a better idea of how it feels; this is pain.
<--This is NOT my arm, just in case anyone was curious. I have had this happen, though.
Ehlers-Danlos Hypermobility Syndrome (EDS or hEDS)
EDS, in a nutshell, is a game of musical chairs with kindergarteners affected by 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, 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 proceeded 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 hysterical. I get that reaction a lot because I'm a medical anomaly, apparently.)
I never thought for one moment that my apparent indestructible nature was because of a debilitating physical disability. So, like I said, some curses could be blessings in disguise.
The downside is the chronic joint 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."
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, and affects the central nervous system, where 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?
The resulting problems are things like dizziness, shortness of breath, severe fatigue, rapid heartbeat, 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.
A gift for those with loose joints:
!!! NOTE !!!
Please, please, PLEASE, 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!
***Read the link below to learn more about Ehlers-Danlos***
I was once under the belief that my hypertrichosis was attributed to my porphyria, but it's not a symptom of the acute porphyrias, which is what I have symptomatically. 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 strange 'defect'.
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 got older I got 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 head, 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 personally met 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 woman and individual.
I highly recommend visiting the Venice Beach Freakshow if you ever happen to visit Los Angeles. Say 'hi' to Jessa, too! (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 to the right 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):
Atrial fibrillation (unconfirmed)
Intestinal ruptures and hemorrhaging
Minor septic infection - meds unnecessary
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.
With all these lovely symptoms, the only thing I will take as medication is Gabapentin and my necessary vitamins. I can tell you how much I loathe taking pills, but I would begin ranting and we don't need that.
I use forearm crutches to assist in walking, because the pain from physical activity and the exertion just to use my legs is torture. My arms have an easier time holding my large frame 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.
HCP specifically(I'll be updating this)