Thursday, June 12, 2008

what i'm doing and why i'm doing it, plus a cat picture

I have decided that fate, karma, destiny, luck, deity, or whatever you want to call it has a job for me to do...

Hello, my name is Mira d'Oubliette, or Mira of the Oubliette. I hope you enjoy your stay in my small, dark corner of the internet.

I am an artist. I paint in oils and acrylics. I draw in anything I can get my hands on.

I am a photographer.

I am a writer, a wife, an aunt, a sister, a daughter, a granddaughter, an in-law, a niece, a patient, a retired EMT, an art historian, a thirty-something woman, a Roman Wiccan, a cat lover, a sci-fi geek, an internet geek, a geek in general, a National Weather Service Storm Spotter, and a Jill-of-many-trades. (You can stop humming Meridith Brooks now.)

I have Crohn's Disease, Multiple Sclerosis, and Rheumatoid Arthritis. These are all autoimmune disease, and I collectively call this the Autoimmune Trifecta. I have had Crohn's the longest, since 1986. I was born in 1976. Yes, you're doing the math right.

I am now a professional writer and photographer who works from home due to multiple autoimmune diseases. Working from my home allows me to have some professional life while being able to take care of physical needs as they occur. As I have a two decade medical history, and I am not getting any younger, this is the best option for me.

I will write here about my life. I will be frank, possibly offensive on occasion, and unapologetic. I will write stream-of-consciousness style mostly. I will share with anyone who wants to read this blog my ups and downs, stories of coping with Crohn's disease as a nine year old child, my thoughts on a thunderstorm, pictures of my cats or whatever else strikes me when I have camera in hand. I will answer emails as I best I can and at my discretion, which means I may not answer every piece of email. Also, please, for the love of the internet, remember spam filters sometimes grab non-spam. They go for spam and get Vienna sausages instead...

This is my job, and I am serious about doing it, although the content will not always be serious in nature. Yes, serious about not being serious. Anyone may ask me any questions about anything. That doesn't mean I'll answer every question. I have my prerogative and I will exercise it. This is also not a crisis line. Please, if you are having a medical crisis, call 911, don't email me first.

This blog is about real life, the good, the bad, and the otherwise. I will write frankly and honestly, within my comfort zone, about my life. My comfort zone can vary from day to day, but in general it is fairly broad. I will try to keep this website work safe, at a PG-13 level. I will talk about medical conditions and procedures using proper medical terminology, and I will provide links to definitions or define terms within a post. If there is something you are unfamiliar with and I don't explain, Google it or go to Wikipedia. Wikipedia will be your friend for general "oh, that's what that is" information. It's mine. Do not think I'm talking down when I take the time to explain something in detail. I'm saving a link to Wikipedia.

I will try to update daily. I understand, and you should too, that I may not be able to do that, or that some days my post will be very short. I have good days, I have bad days, and I have really shitty days. Understand this. I am writing this from my hospital bed after having lost more than 4 units of blood in 36 hours from a bleeding ulcer in my intestine. I'm having a good night, I can't sleep, but I'm not feeling that bad, and I can type and think.

Multiple Sclerosis is a disease that effects the central nervous system. This is the brain and spinal cord.

Multiple sclerosis can cause a variety of symptoms, including paranoid delusions, changes in sensation (hypoesthesia), muscle weakness, abnormal muscle spasms, or difficulty to move; difficulties with coordination and balance; problems in speech (Dysarthria) or swallowing (Dysphagia), visual problems (Nystagmus, optic neuritis, or diplopia), fatigue and acute or chronic pain syndromes, bladder and bowel difficulties, cognitive impairment, or emotional symptomatology (mainly clinical depression).
-Wikipedia, Multiple sclerosis signs and symptoms

I could suffer from any one or combination of the above at any time. I woke up partially blind one day, and that is how the "Yes, it is definitely MS" diagnosis was made.

People with autoimmune diseases do not always look sick. Often we don't. Crohn's disease attacks the digestive system, yet I was heaver than ideal. Then I began to lose over a pound of body weight a day. A pound a day, and that could last for months, in an extreme situation. I'm not as overweight as I was just 10 days ago, I'm about 15 pounds lighter, depending on which sets of scales I use for the before and after weights. There is a margin for error in this, but the physical signs of my skin becoming loose on my body is obvious.

Have you seen Silence of the Lambs? Where the killer puts the victims in a pit, doesn't feed them for a few days to loosen their skins, before killing them. I would be easy to skin right now.

You have probably noticed I have an eccentric sense of humor that can be on the grim side.

If you can't handle it, go somewhere else.

If you can't handle rapid mental gear changes, go somewhere else.

As of right now, because of the MS and medications I'm on, I fixate on things. This post is an example. I'm currently fixated on writing this, laying out how it is in no uncertain terms. I could and probably will be fixated on something else in an hour or two. I may want to write about it, I may be doing something completely different. That's how this works.

I have been told I am an inspiration, a hero, an amazing person, and many other wonderful things. I have been told every day from May 30, 2008 to June 12, 2008 that I should tell my story. Maybe I'm an inspiration, but I don't think I'm a hero or doing anything all that special. I'm living my life. I've had to make major adjustments in my lifestyle that I thought were many years away, but caught up with me sooner than I expected, sooner than I wanted.

I see this a work, a job. My job is to provide entertainment; something enjoyable, interesting, thought-provocative, sometimes bitter, sometimes sweet, writing and photographs. That's my job. I get paid by readers dropping money in the Oubliette's PayPal Tip Jar. You decide what to pay me. This is a different kind of new internet economy, right here. I get paid whatever you think I should get paid. I am not asking for a hand-out. I will be documenting my income, and the rest is my problem. You are not donating to a charity, you are buying a subscription to a dynamically written journal. This is business, but there are no ads on this site, and there never will be. I have complete control of the content of this, my little corner of the internet.

I write stream of consciousness. Sometimes this is good, sometimes this is bad. I'm a fairly good self-editor, but typos and screw-ups occur. Some thing will certainly get past spell check and all the other electronic assistance these days to make sure writing is coherent.

I am not alone in this. My friend is helping me with this. He is Telephorus, the Accomplisher, named so after the son of the Greek god of medicine, Asclepius. I have a long-time interest in the religion of ancient Mediterranean cultures (Egyptian, Greek, Roman, Minoan, and so on), and people will be named after figures from these cultures. Telephorus may post here on occasion, at his desire, but I'm not going to let him steal my thunder. Along the same vein, privacy will be respected and defended for everyone. I will use pseudonyms for everyone unless I've been told it is unnecessary.

*takes a deep breath and looks at the verbal diarrhea*

If you made it this far, congratulations. You just read my terms of service, mission statement, and some randomness.

As I stated previously, this is a profit-making venture, to a point. I have operating costs to create this, then I have medical bills. Constant medical bills. That's what I'd like to have a little extra $ for. You may subscribe to this blog as an RSS feed, so think consider paying for your subscription. The amount is at your discretion, what you think this is worth to you.

Thank you for reading this, and allow me to extend a whole-hearted welcome to my little corner of the internet. Stay as long as you like, poke around, or just take a moment to look at a cute cat picture.

And you can't say I didn't live up to my promise of a cat picture.


Say hello to Freya, the youngest Oubliette cat. There are 4 more.

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