Erythropoietic Protoporphyria For Dummies

  The easiest way to explain Erythropoietic Protoporphyria to an inquiring stranger, is as an allergy to the sun. It's inaccurate, but easy. Most people are familiar with allergies, and it's a simple way to convey the idea that there are medical reasons behind my madness. This explanation more often leads to a comment than additional questions. Personally, the more questions I'm asked about it, the more likely I am to give answers that I later realize may not have been interpreted in the way that I would have liked, darn it.

  The most dramatic way to explain EPP is,"the vampire disease". Imagine a creature of darkness slipping shadow to shadow, through a world of beautiful light. Spooky, no?

  If you've read any information on the subject, you know that it's technically (long story short)an inherited blood disorder that may effect the liver, and(short story shorter)causes sensitivity to sunlight that can result in severely painful burns, in some instances within a matter of minutes. If you've read more than one article of information, you might have noticed that no two seem to provide identical descriptions of the symptoms, and how, where, when, and sometimes even why, they present themselves. This is because no two cases of EPP are identical. It's also a very rare condition with rare opportunities for research. No doctor knows any more about it than what they've read, and how it's been described by their patient. It's safe to assume that any facts on the matter are collected from the experience of one, or only a few individual cases. No one can tell you what to expect if you have or know someone with EPP, myself included.

What to expect from EPP:

  When most people hear,"sensitivity to light", they think of someone who wears sunglasses to prevent headaches, or a person prone to sunburn on hot bright days. These things are normal, and if EPP were normal, you wouldn't be here. When a person with this condition claims to be sensitive to light, they mean precisely that. They are sensitive to it, they feel it more strongly than the average guy, and not in a good way. Even something as trivial as a T.V. or phone screen can be a bother. The degree of sensitivity varies from person to person, and from time to time. Though, I don't remember any time that it's varied enough for the sun to feel anything resembling pleasure on my skin. The sun is hot. Light can be hot too. Too much heat is irritating, and it can lead to burns. It can also damage the skin before it's been burned. It can weaken it to touch and pain, allowing it to be broken and torn like paper, or thickening it like a hide. I say,"before it's been burned", and not,"without being burned", because my skin has only been in these stages preceding acute burns. There are a variety of other ways it may effect the skin, but again it varies. The acute burn seems pretty standard. 

  An acute burn feels most like the few seconds directly after burning yourself in the kitchen. Except, the seconds carry on for hours and days. There is no pain medication know to help. Relief can be found from cool things, and water, constantly, the whole duration. 

  The only way to efficiently avoid a burn is clothing, or some other solid material that shields and shades the skin. 

  To wrap up today's blog before I say too much, or leave something out.. I think this is the simplest way to explain it that applies to everybody. I hope that I've answered at least some of your questions, or provided a tool that helps answer some of the questions presented to you. Thanks for reading!

                                  Your pal,

                                     Sally

  

A Thing

As it stared into the sun

It shrunk and struck it's pupils numb

The finest lines hued loud and green

It didn't mind, it howled and dreamed

It's lashes curled back, singed and soft

It laughed and laughed in fizzled coughs

And tipped it's hat into a toss

It wished and spat as it flew off

Then twitched and gagged an acid broth 

And fixed it's hands into a trough 

It dripped it's tongue and bared black teeth

As cracks between it's fingers leaked

A patch of grass collapsed and steamed

A mist that beaded like a cream

Upon the feet of it (this thing

That winked and heaved and should be hanged

That steeped like tea in fevered stains)

It creaked it's knees and teased it's mane

That bleached and tangled as it bathed

And strangled at it's throat with strays

That waved like wheat below it's face

Which braised like beets aglow in mace

It's raisin cheeks enclosed a taste

And stink that rose within it's waist

Of scraping bones and splitting veins

Escaping moments slipped it's brain

As trace explosions licked it's legs

It paced and posed, and picked it's grave

Then laid it's clothes in fit display

To baste it's shoulders with the rays

That sprayed by day to smolder things

Who hold their gaze and should be hanged

Sunny, Sunny, Snow, Snow

Cold gifted blindness

Resilient golden highness

The ceiling and the earth are under spell.

Nose bitten bitter

I am smitten by the glitter

Visionless of any hurtful stars of hell.

Shivering witness!

I forgive your unforgiveness

Does the briskness lift the spirits of your sins?

You win, Almighty!

Do your vicious licks ignite me?

Am I fearless in the tiers of frigid wind?

Hinder your riches

Your twisted gifts of quarrel

I formally invite you stricken down.

Ground you your body

Made of heaven. Make me godly

Stop me by the white of winter's gown.

Unedited Jazz Club Throwback

scrubbing is loud in the hallway at night. rubbing around on a wall wailing wipes. swiping i smite it and bite off some lipskin, which sticks to the pipe i ignite in the kitchen. i hit it and listen to lightning that isn't, a smidgen as likely to excite the living, as giving the slightest of strokes on some molding, at night with a soapy old sponge that i'm holding, between a cold thumb and a dumb set of digits, that grip as i swish and i rinse in dish liquid, that drips on the floor as i sit in position, to get at a corner and finish my mission, envisioning limitless chores in addition. as chords of percussion are frightfully stricken, despite my decision to function in silence, i viciously spit and i violently shine it. i bitch with a whisper," i'm tryinna be quiet". i inch up the stairs like a giant vagina, and slip back inside where i kick off my slippers, and slide out my jacket and pick up the clicker, and flick on a bic with a perilous racket, and stare at this crap that is barely distracting. i carelessly clap at the cats in the cat scenes, and slap at my knees with well rounded reaction, that drums a resounding display that's delightful, but scrubbing is loud in the hallway past nightfall. 

Light, Light, Light

  I might be crazy about light. I might not. It would be nice to know. If I am, I can take steps toward correcting it. If I'm not, I'm a good person. I'm always trying to figure it out, but never enough to conclude the process. 

  I recently started letting some into my house again, here and there. Part of me likes it, but most of me has acquired an association with it's absence and home. I was letting in more at first(a few weeks ago), than I am now. I feel like I'm doing my best, but I'm ruining my experiment. I also decided to start covering up a little less when I go out. Not wearing sleeves or gloves, or leaving some of my leg bare, and twice I went out without a scarf. Every time, I tell myself that I'm going to burn. I don't want to burn, but I don't want to be crazy either. I might be. 

  I wear 110+ sunblock, and have only gone out later in the day. I've really only been going in the car and across parking lots, and often it's been cloudy, but these are only excuses. I expect more. 

  I believe that it's irritating, and I can feel it on my skin, but crazy people believe what they want to believe. It gets so irritating that I want to pause the experiment, but at this point, logically, my results should be in soon, and I want them. It doesn't take much longer after that for me to lose my patience. A heat radiates from just underneath my skin. The lightbulbs and stove become noticeably hotter too. Everything becomes light, and stressful. I try to wait for marks or an undoubtable amount of pain, or anything that I can be sure is not a figment of my imagination. When I notice marks or dots or tiny hives, it's not enough, they could be anything. Any sensation I feel could be anything too. 

  The stress helps me realize it's hopeless. I'm not doing enough to

get enough, I'm just fucking with myself. I don't want to push harder, or continue, I want a break. I want to feel like I'm treating myself normally. In this position, the most comforting choice to make is to admit that I wouldn't like either final result of the experiment. Both possibilities would only fuel more negativity towards the sun. Extra spite is the opposite of what I need, especially if I'm insane. I don't want the stress that I've already caused to be nothing other than a tantrum of insecurity, so I remind myself of what I've done(received more light), and how beneficial that sounds when I say it. It might not be much, but I've made some progress with practicing being human, and that's what's most important, especially if I'm insane. On the other hand, I know that after I cool down I might start from the beginning again, with the same beginning motive. 

  I can't tell if I'm making the whole thing crazy, or if it's making me crazy, or if under the circumstances everything is reasonable. I think I'm explaining it wrong. I'm as confused as the next guy. I'll probably change my mind, and write a retort next week entitled,"Contradictions and Me". 

  Light, light, light. That's my problem. That's not right, it's true. It may sound wrong to you, me too. There's nothing normal about the way I treat myself, and no one who's sure of what's best. I talk about it all the time, nonstop, and never. I do whatever. 

  Everyone's very happy for me slithering out from the darkness, and I'm happy for them, but no less pissed off."I need to learn how to do this myself!", I wail, opening the curtains. Then, I soil my diaper and pout. Baby steps. 

  I feel awkward when anyone does anything to cater to my sensitivity. I don't expect it, every time. Don't they know I'm crazy? Suckers. 

  If I'm particularly cranky, I'll wear a hat just to clean inside of my house. If I get a little crankier, I'll take it back off. This behavior reminds me of puberty, but without all the other dumb kids. It's a cry for attention towards my changing body. It's pretty intense stuff. Also, I have acne.

  Incendiary or insanity? I can't choose both, that's greedy. I know that it's real, but how real? What convincing tricks my mind must play to make a fool of me. Fool me twice, I'm crazy. I'm making lots of progress. 

  If you aren't familiar with my work, this is about that thing I discuss sometimes. Thanks for tuning in, and be sure to look out for ghosts. 

  Until next time, follow me on twitter, and hashtag your friends. 

Thank You, Satan

  I chugged a bunch of blood at the party, then acted like a douche. I don't know my limits. Nobody knows my limits, but they might want to, because I'm hypnotizingly interesting and dark. I've never found another person interesting. It might be the intensity of my hidden emotions that allures people; the depth of my metaphorical torment haunting them from within me like a ghostly demon thing. Maybe it's my eyes that burn them with  fires from the hell that I live everyday in my mind. My poems attract a lot of attention. I write at least three a day,  passionately, and people love to read them. They don't always make sense, and sometimes I use words inappropriately just to make good use of them, and the subject is always tightly based around my crying habits, but they're really good poems, you know? Honestly, I'd prefer to be left alone to write forever, and never show my work. I selflessly socialize because people are more comfortable with thinking of me as a fellow human. 

  Blood tastes bad. Sometimes I rest a few pennies on my tongue as practice. I want to like it, so I don't have to lie if someone asks. It's not the taste though, it's about the feeling of power that comes with it. Normal happy people have no power over me. They're too distracted with living to notice the spookiness of reality. By choosing to not be predators, they agree to be prey. It's not always blood, I can also consume energy. I could psychicly drain you completely dry, without you even noticing. While everyone is laughing and having a good time, I'm feeding and growing more powerful. 

  Blood is a flashier way to go about it. It may seem medically and mentally sick, but it makes a statement. It's like looking a person right in the face, and telling them that there's something wrong with me. I choose to be strong. My weaknesses exist only in nightmares. I want to drink your blood for no reason. 

  It's a very complicated and spiritual lifestyle. It's not easy to function in society wearing black makeup and a cape, but I can't change who I am. When I take the makeup off,  it's then that I'm wearing the real mask. When I take off the cape, I get cold. Nobody understands me. The world is a clam, and I'm a unicorn seahorse. There's no better way to say it. There are no words unique enough to express how different I am. I'm much more special than anyone else. The stress drives me to drinking. 

  Blood, that is. Red gold. Texas chainsaw tea. A bubbling crude. I feel younger just thinking about it. I feel smart when I think. I think about blood all the time, so I don't have to lie if someone asks. Nobody believes me until I'm floating around the party, guessing everybody's weight. That is, if I can tear myself away from posing in a corner, thinking about blood. I want it so bad, I throw up afterwards. 

  My only fear is slayers. Slayers frighten me almost as much as I frighten myself. They stalk me everywhere, and one even moved into the house next door. They all disguise themselves as Polish, and grow stew tomatoes to survive. My every move is monitored and kept in records around the world. They can see and hear everything except for when I'm on the toilet. I try to do things to prove how innocent and hurt I am, but I'm evil.  The only reason I haven't been killed yet is Satan. 

  Thank you, Satan. 

The Big News

  I'm thinking about changing the name of my blog to,"Princess Garbageface Sometimes". The whole "today" thing might seem to imply that I'm capable of writing something blog worthy every day. I'm not. Sure, I could write a couple lines of sweet nothings, but it would be for no reason with no real thought. I also understand that my blog isn't nearly as convenient to read as everything else you've ever read, and whatever mistake occurred to lead you here  isn't likely to repeat if all you find is a brief description of my menstruation or what I did with my hair today. That sells great on facebook, but everyone wants a hug. More importantly, it's rumored that short blogs are frowned upon, and I would be nothing without the smiles of people who as far as I know don't exist. Filling the daily gap with bull would fall far too short of the fine quality expected from my fan. 

  I'm not saying that it would be impossible to write so much so often. If it was my job, I would. This blog is just a new drop in the bucket of all the many things to do that would be just as well not done. On top of all of those things, are things that do matter, that I'm obligated to choose to do.  Above all is maintaining a balance of my choices that pleases me the most at the time. Too much of any one thing is no good. Everything needs rest to stay strong. For example, as my brain begins to exhaust from writing, I begin to spell phonetically. By the time I need a break from one thing, I'm usually ready to pick up on something else that was put on break earlier, so I kind of do what I want when I want, in an always occupied sort of way. 

  For an unemployed housewife with no children, I'm mysteriously busy. I can account for all the things I do, but I could stop everything aside from house cleaning, and appear just as productive. I do waste an unnecessary portion of my effort thinking about my tasks. I squeeze in chunks of laziness everywhere, but acting lazy doesn't always allow me to relax. I'm not at my best balance with that right now. Maybe it's the weather. Everyone wants to make the most of their summer. Maybe it's because I have no job. Maybe it's the voice in my head that knows how unimaginably busier everyone else is that won't shut up long enough to calm down. Maybe it's your fault. Busy, busy, busy.

  Writing is good for me, and I need the practice, and I love the fame. This blog is still experimental, but I'm committed until stated otherwise. If you don't expect too much from me, I won't give you too little.