Devolving

This first poem I'm posting is actually one that I originally wrote in 2000.   One of my favorite things to do with a poem I've written is to go back over it about a gazillion times and remove as many words I can, so this is it's final incarnation, (unless a future reading inspires even more editing).  My inspiration for that, of course comes from William Carlos Williams' The Red Wheelbarrow.  /it is so spare, and yet the imagery is so crisp, and his word choice is genius. My work is nowhere is as brilliant obviously, but this style is inspired by that.


Devolving

i never asked you
if you could love me
took for granted
that you couldn't
perhaps you wouldn't
which didn't bother me
not really
i liked how things were
fixed
unchanging
didn't want the truth from you
never asked to hear it
still
you told me
now things are changing
evolving
perhaps devolving
as i ponder the man
who said that
ignorance is bliss
i assume he must
have had someone
like you
in his heart
and in his head

Anyone Still Out There?

I have always wanted to be a writer. I've written poetry since I was in grade school, short stories, essays...especially essays, and journaling of course.  After a friend I loved dearly died far too young, I hit a wall of writer's block that I only have ever periodically came out of.  That was 13 years ago.  Writer's block, frankly, sucks.  I have posted here, obviously, and have written a couple of poems here and there, but nothing with the frequency that I had before...

My blogging has always been part of the effort to break through the wall that somehow keeps me from putting the words in my head on paper correctly.  It hasn't been all that successful, obviously.  I recently realized that some of the reason it's been so difficult is that being funny became more important than what the words in my head were.  And being bat shit crazy, there's a lot of funny stuff in there.  But being bat shit crazy with more baggage than a drag queen on a pleasure cruise means there's a lot of dark shit, too.  I've been put in, and put myself in, very bad places in my life and it's left it's mark on, and not writing that is holding me back.

I've written some stuff over the last few months the past few months that I'll be polishing up and publishing over the next few weeks, trying to blog at least three times a week, at least one of those a poem.  And I'll try to limit the music posts, but I have great musical tastes, and if you are only hurting yourself if you don't at least check it out.

On that note...tonight's music comes from Amanda Palmer.  I have connected with her music in a way I never thought possible after reading some of the things she has said in interviews.  This song kills me, and I'm considering getting this chorus as a tattoo:

That's just me, so take me or leave me
But please don't need me, don't need me to need you to need me
Because we're here a moment the next we're dead
So love me or leave me but try not to need me.


Go forth and listen, gentle reader...

On Being A Nerd...

I am a nerd, and I was a nerd long before it was cool.  I'd read all 14 of the Oz books by third grade.  High school was more of the same.  While I was most decidedly an underachiever, I was still a nerd.  I didn't go to parties or dances.  My happiest high school memories revolve around all night study sessions, either with my two closest friends or with my Academic Decathlon team.  Hell, even when we ditched class, we did it to  watch the Star Wars movies at a friend's house.

I love being a nerd.  I like learning things, and it takes only a little curiosity to send me down the rabbit hole of obsession for hours and days and months and years.  That's how I became so familiar with Tudor history. I've read everything I can get my grubby little hands on, spent hours poring over museum websites and planning the trip to England (to tour all the historical Tudor sites) I will never be able to afford.  It is what being a nerd is all about....indulging your love of something even if it's impractical and basically useless.

I love that being a nerd is becoming cool.  It's nice to know that it will be easier for the next generation of nerds to be who they are.  While it's true that social ostracism doesn't really deter nerds from being nerdy, it does make it more painful.  And while some great things have come out of that pain, it's also made for some very unhappy nerds.  And, frankly, being nerdy is much more fun when you can share it with people you like, when you can have a family that gets you.

I worry, though, what this trend towards nerd becoming mainstream means.  As anyone who's ever been a fan of an obscure band can tell you, mainstream success often comes at a price.  A watering down to make it more enjoyable for more people.  And while it's fun to share your nerdy interests with someone, it's so not worth it if it ruins your interest.  

Luckily for me, nothing is going to change Tudor history, (though Hollywood has made some abysmal choices in re-imagining it) but as with most nerds, I have more than one area of interest.  The Star Wars franchise was ruined by the prequels, for instance.  So many people waited decades for those movies and were sorely disappointed, and now you can't even find the original trilogy without the remastering.  The latest Star Trek movie (which I just saw, because I'm always a couple years late to the party) was awesome, but I know there are new movies in the works, and it always makes me nervous when when a modern version is coming.  I understand that making a movie or television show hast to be profitable, but it's very upsetting when that profit comes at the cost of quality.  

I'm excited to see what the nest few years mean in terms of new movies, new shows.  But there's going to be hell to pay if they ruin something I love.  And by hell, I mean a strongly worded letter and lots of pouting and whining.  Because I will always be a nerd, and that's what we nerds do.

Carry On

My little sister is going through a big time break up...and, oh, I can so relate.  It makes my heart hurt to think about her going through this.  I have so much anger in me right now.  Anger at her ex, anger that I can't make this easier for her.  She's still living with her ex, and will be for the next two weeks while she works out the length of her two week's notice and gathers her things together.

She had hoped to be able to put it off until the beginning of October, by which time my cousin's house purchase will have finalized and she will be able to move into the in-law quarters in my cousin's new house, but for the sake of her mental health she is coming home much sooner, and will be staying with my parents until she can move into my cousin's house.

I am so looking forward to having her home, having her around family who love her and will remind her that she is a good person, and strong and loving and wonderful person.  That she is not a failure, that she is where she is because sometimes life deals us hands we never saw coming, and that when someone blindsides you and knocks the wind out of you and you feel like you'll never be able to take a deep breath again for all the pain in your heart, those who love you, your family and your friends will help you pick yourself up and dust yourself off and try again.


For you, my sister.  Because you are loved and you are strong and smart and kind.  Carry on...

Piano Playing Panty Peelers

I'm warning you right here, before your read a sentence further than you have to, that I'm on day 4 without my antidepressant medication.  Needless to say, I have no idea if what comes after this warning is worth your time, whether it makes sense or if, in a week, when I'm back on the meds and a little more evened out, I may come back here and go "What. The. Complete. Fuck?"  So, you know, if you feel like maybe you just want to wander away and look at pictures of disapproving rabbits, you go right ahead.  I promise not to track down readers by their IP address when I see that they clicked off my blog within a few seconds.  Or well...I'm sure that my meds will kick in before I have the chance to track you down, and I'll think better of it of planning extensive revenge.  Probably.

Anyway, there's this book out there called 50 Shades of Grey that is supposedly all the best things about sex and romance ever.  Or at least that's what people are saying.  I don't really know, because I had never heard of it before yesterday.  Because I live under a rock, apparently.

So, the way that I was introduced to this book was through this fabulous recap on a blog by writer Jennifer Armintrout, who I also had not heard of before yesterday, but who is ridiculously funny, and who writes really well, and whose books I now want to read in entirety.  I've already read one written under her pseudonym Abigail Barnette entitled Bride of the Wolf, which if you're looking for well written, incredible sexy erotica involving a werewolf, I highly recommend it, especially since I never once had the squicky, bestiality vibe I usually get from sexualized werewolves.  Also...I'd like to take a moment to appreciate the irony that Barnette is the pseudonym, while the unlikely sounding Armintrout appears to be her real last name.

Anyway...

Apparently, 50 Shades of Grey started out as Twilight fan fiction, which is abundantly obvious, despite furious claims by fans to the contrary.  It is Edward and Bella do BDSM...badly.  I'm not someone who is a heavily into the BDSM scene, but I have been curious about it, and as I do with anything that makes me curious, I researched the shit out of BDSM, something the author of 50 Shades apparently didn't feel the need to do, since she portrays BDSM as an outcome of childhood abuse and an inappropriate teenage relationship with a pedophile.  Now, I don't doubt there are people out there who have been damaged and can only experience pleasure through BDSM, but it's not the norm in the BDSM community.  And as an adult survivor of childhood physical and sexual abuse, I can tell you that it reliving what someone did to me as a child is not even a little bit sexy, and any BDSM activity I've ever been interested in would have stopped immediately if it even for a second reminded me of being abused as a child.

Okay...all that is interesting, and the sexual politics in the story are definitely something we should all be talking about.  Are we really wanting to encourage girls to read a book where the heroine feels she has to give in to things she doesn't want to do, just to keep her partner?

But, that is not the purpose of this post.  I don't want to have that conversation right now because, frankly it's too emotionally triggering for a woman with PTSD to have while off her meds.

Anyway, this book, 50 Shades of Grey, like Twilight, have women all over the country bemoaning the fact that their husbands and boyfriends are not as awesomely romantic as these fictional characters.  Women who are deeply disappointed not to be living with the men (Christian and Edward) in these books every day.

Now, I want to talk about something that Edward and Christian have in common...they are these dark and brooding characters who are so damn sexy that all females in their immediate vicinity want to drop their panties immediately upon seeing them.  (But, Christian is not not based on Edward...no...) They are, of course, perfect examples of the male physique, and they are dark and brooding.  And they both play the piano masterfully.  Wait...what?  Somehow, it's sexy for these guys to play the piano?  I don't know where that comes from, because I know when we were kids, we always pictured the boys who took piano lessons to look like this:

Now, don't get me wrong.  I have some amazing guy friends who are probably deeply embarrassed when their moms show people the pictures in which they look exactly like this boy.  And they grew up to be pretty cute guys.  But...paragons of all things that exemplify masculine beauty do not look like this.  They just don't.  Which is why, in the Twilight movies, Edward looks like this:

And it's rumored that Christian from 50 Shades of Grey is going to look like this:

With all due respect to my nerdy male friends, who are too fucking awesome for words, this:

Does not grow into this:

I'm sorry, but it just doesn't.  And, you know what?  I'm actually glad that's the way it is.  It would be really, really fucking unfair if you got to be that incredibly hot and also you were this cool, nerdy guy who played the piano.  The cool, nerdy guys who play the piano have a lot to offer.  Guys who look like that, usually, well...they don't.  They're asses.  Because they fucking know they are hot, so why do they have to be cool, interesting guys?  They don't.  They just have to sit there and smolder and half the women in the room will have to go and change their panties.  Cool, interesting guys are that way because they have interests outside of what hair gel makes their hair look just messy enough to be hot.  They have spent their lives learning that earning romantic attention means having something to bring to the table, something that's going to make women want to talk to them rather than the guy smoldering away at the end of the bar.

But then, tonight, as I was listening to my iPod and crying like a fucking idiot (I mentioned the part where I'm not on my meds, right?) it hit me.  There are two songs that are responsible for this whole piano playing, romantic, hot guy bullshit....

Fucking Brenda Russell with her Piano In The Dark:

And fucking Lauryn Hill with her Killing Me Softly:

Those. Fucking. Bitches.  Seriously, are they trying to make women feel like their men are not panty dropping material unless they are not only accomplished men, but accomplished men who are hot and can play the piano?  Between those women and Stephanie Meyer and E.L. James, they are ruining sex lives every where.  Brenda Russell and Lauryn Hill laid the groundwork, instilling these damn songs into our collective American female psyche, and then those bitches Stephanie Meyer and E.L. James come along and cement the bullshit idea that this hot, piano playing, brooding guy is the only kind of guy who can and should have access to our wet panties.

Look, ladies....I've dated musicians.  In fact, my only serious relationships of my adult life were with musicians, and this after my musician sperm donor biodad walked out on me at age four.  (I know, I know....my psychiatrist has a field day with that one, let me tell you...)  And, in dating musicians, I've also spent a lot of time with their musician friends and, you know what?  Musicians don't make good partners, because you will always, always come second to the music, ladies.  Yeah, they may do charming shit at first and play music for you and make it seem all romantic and shit...that doesn't last.  You end up resenting the flotsam and jetsam that musicians strew around your home.  You resent the nights that they don't come home and take out the trash because they're out playing music.  You resent the fact that you have to wear headphones to read because of the incessant practicing.  When you've heard a song five hundred times, it's not romantic anymore.  It's fucking annoying.

So, even if you manage to find your, hot, brooding piano player, he isn't going to give up the piano for you...anymore than an artist is going to stop painting for you, or a writer is going to stop writing for you.  And as a sometimes writer myself, I can tell you that no matter what, the art is the first and purest love in an artist's life.  Even if they aren't playing or painting or writing because life and family and all of that gets in the way, the art is still the deepest love.  And, if they do give up the music for you, they are going to resent your ass.  It's not going to be all romance and roses anymore.

So, okay...read these books, listen to these songs.  Enjoy them.  I sure as hell do.  But, understand that these books are fantasy.  Edward Cullen doesn't exist, and not because he's a vampire, but because that person, the perfect, sexy amazing man who never annoys you or resents you or makes you want to strangle him doesn't fucking exist.  And why would you want that guy, anyway?  Look at how Bella/Ana is always so filled with shattering angst about how these gods among men are just too good for them.  Yeah, that sounds like a fun and sexy way to go through life.

At The Intersection of Crazy and Parenting

If you're familiar with Dooce, you've heard her say that because she's crazy she doesn't hear and see things the way other people do.  That someone can say something as innocuous as "Hi" and in her head, she hears something else...like, "I hate you."  Yeah, I'm like that.

And I'm like that all the time, every day.  And while I can carry on a perfectly normal conversation with you, and you will think I'm fine, but I hear something that for me, interprets to "I hate you, Laura, and also, you smell bad."  I know, I know, that it's me and not you.  I know that you think we're having a normal conversation and you have no idea that I'm dissecting every nuance of whatever it was that was said.  I'm going over and over it in my head, hearing all the ways I am just not good enough to even be sitting this close to you, let alone presuming to talk to you.

So because I'm crazy, parenting has all sorts of room to reassure myself that I am, in fact, the stupidest person who has ever lived and shouldn't even be allowed to have spiders build their webs in my corners, let alone be in charge of raising a whole other person.  For the most part, I manage to keep my crazy from impacting the midget too much.  Because I know I'm crazy, while I will obsess over whether the midget will end up in a gutter somewhere, saying "If only I had a decent mother..." I also, am pretty good at keeping those fears to myself.  Because, if I'm not careful, the midget will end up  reassuring me (ME!).  Which is not okay and is just going to lead into a whole other round of self-recrimination, that will lead to a downward spiral which will end with me sitting in a gutter...or throwing the midget into the gutter myself to prove to myself that I am, in fact, a horrible parent.

One of the most interesting (Did I say interesting?  I meant mind-blowingly idiotic.) aspects of the crazy as it relates to parenting is that if I see someone on the television doing something stupid, I immediately wonder about how his or her parents feel about it.  It's why, to this day, I can't watch Jackass or any of the stupid spin-offs spawned by it.  Every time I see them doing those stupid, disgusting things, my inner mom thinks, "Please, please, for the love of all that is good in the world, let me be dead if the midget decides to ever do that and televise it."

It also leads to me telling the midget not to do things.  A girl get bullied online in a Lifetime movie?  Clearly this calls for an hour long discussion about what to do if she's bullied online, and what will happen if I ever find out that she's been bullying someone.  And Teen Mom?  Please.  There isn't enough Xanax  in all the world to allow me to sit through that one.

Needless to say, the midget is used to being instructed not to blow up buildings or dismember people or wear dirty underwear, just depending on what we're watching.  However, I apparently offended her intelligence tonight.  We were watching a show about  BASE jumping, as I turned to her to say "Please, don't ever go BASE jumping."  She got that look that all parents of adolescent girls know and hate so well and said "Really?  Really, Mom?  You're going to tell me not to go BASE jumping?  Really?  How stupid do you think I am?"

I couldn't decide whether to smack her or laugh....kinda like most moments with a 12 year old, really.

Adventures in Self-Love

I really wish Blogger would quit changing shit...or that maybe I was around often enough to notice and understand the changes.  Mostly, though, it's the option that requires on effort of my part.  That's just how I roll.

Ahem.

Anyway, I am here for once, and it's not just to post a video to a song that's roughly the same age I am.  Though, I admit that'll likely happen next.  And not just because listening to songs that are as old as I am makes me feel younger.  It's because sometimes the words in my head get garbled somewhere between my brain and my fingers, and so it's easier to post someone else's words and go..."Yeah, what she said."

I am recovering from a fantastic, but exhausting weekend.  My younger sister came to visit and we decided that , dammit, we deserved some fun.  So, we thought we'd head out to the Italian Picnic, which is a lot like a county fair without the livestock, but with the added bonus of bocce ball.  And, since it's one of the Amador County events, usually you run into everyone you've ever slept with, and their brother...and if you're anything like me, you've probably slept with them, too.  Strangely, I only saw a handful of people I knew, which probably means I'm getting old.  So, after a brief lap of the picnic, during which I was reminded that heels and grass are a bad combo, we headed off to a local bar, to have some fun.

And we did have fun.  I got the older sister to join us, and the midget's dad and his lovely girlfriend were there as well.  We listened to a band that plainly prescribed to the theory that if you can't play it well, you should at least play it loud.  There were a surprising number of people in a very small space, and the bartender made a mean White Russian.  Once our eardrums had been thoroughly assaulted and I had clearly had enough alcohol, we headed off to Denny's (also an Amador County tradition) and ate greasy food to soak up the alcohol.

The evening, combined with a weekend of family time has made me quite exhausted and achy, but my soul feels better than it has in a long, long while.  We're doing it again next month.  It's part of my new "take care of Laura" plan.  And frankly, I need it.  As much fun as I have hanging out with my family...and I do have fun, it's not the same.  Sometimes, I need to not be someone's mom or aunt.  Plus...I need a break from my cousin...I love her dearly, but her continuous unhappiness over everything is wearing.

Look, I get depression.  I understand how it sucks all the color out of the world, and covers even the best things in your life with shit.  It makes you feel like nothing has ever felt okay, and like it will never end.  I get that, but you can't wallow all day, every day.  You can't turn everything into a tragedy and you can't stop finding the humor in shit.  You have to laugh despite the shit, despite the depression.  Because if you don't, then what's the fucking point?

I've got a few more plans in the near future, things that are designed to make me furiously happy.  I've got lunch with a very old friend next week, and another night out with my sisters next month.  I'm talking dancing on tables and waking up in the morning with my fake eyelashes stuck to my nose, going, "Damn that was fun."  I can't wait!

And, because I have to share my musical obsession...here's what's on repeat on my iPod this week...

These Old Friends

This song, like so many old country songs is an old, old friend. It was one of the first songs I ever knew by heart. My heart hurt a lot the day Waylon Jennings died....I saw him live once, with the rest of the Highwaymen, and it's a memory I'll treasure forever. I'm listening to old songs tonight, thinking about days that are probably best forgotten. Thankfully, I have these old friends to get me through...


 

 On a somewhat related note...I'm in love with the History Channels miniseries, The Hatfields and McCoys. Tomorrow night is the last night, and I may end up missing it because my oldest niece, the one born when I was a very young 17 is graduating tomorrow night, and I'm going to be there come hell or high water.

What's Going On.

This is going to be a long and difficult post. It's okay if you want to go look at pictures of disapproving rabbits or read a funny dyke blog and learn lots of new terms for dykes...go right ahead. I've done plenty of both in the last few days, and it's far more enjoyable than anything else going on in my life right now.

I'm sitting on my couch with my heating pad on my lower back right now. I cleaned my bathroom yesterday and the backlash of that is major back spasms and unremitting headache. I also got bit by a tick in the upper, fleshy part of my arm (like there's a part of my arm that isn't fleshy) and it's swollen and itching like a motherfucker. I suspect, from experience, I'm incubating a case of cellulitis that is going to require antibiotics. I am not a happy camper.

I had a very disappointing appointment with my rheumatologist at Stanford on Tuesday. I had great hopes of some new medication that would help banish this fucking godawful flare I've been in since the Archaeogoddess visited and I had that stupid bronchitis. That didn't happen. My rheumatologist did a cursory exam, looked at my latest labs and asked me how my prednisone was working. I told her that it wasn't working as well as I'd like because I was still dealing with so much inflammation, so much pain, so much fatigue. She told me, despite having been told differently by my orthopedist, my cardiologist and my general doctor that while I clearly have some sort of autoimmune disorder, that at the moment she can't definitively say Lupus or RA...obviously I have arthritis in my knees, and my lower back, but she's not sure it's rheumatoid in nature.

Unfortunately, Immunology is not a well-researched branch of medicine. There is sooo much they just don't know about autoimmune conditions. The money for research isn't there. When people donate, they donate to breast cancer, and heart disease and diabetes. All great causes. And obviously, diabetes is one of those that's near and dear to my heart. But they aren't researching the autoimmune component of Type 1 diabetes as much as they are other components. Immunology just isn't well funded research-wise. And god knows it's not understood.

Then, my rheumatologist, who is roughly the size and shape of a pencil, started talking about my weight. I am fat. I'm not overweight, or voluptuous, or any of that. I'm full on, motherfucking fat. And god knows the prednisone doesn't help. And neither do any more diagnosis. A woman with PCOS (polycystic ovarian syndrome) and no thyroid has a better shot at winning the lottery than maintaining a healthy weight. And since I can't exercise outside of a pool, and can't afford a gym membership (poverty rocks), that doesn't help either. So, I'm used to the questions about my weight. And I'm used to explaining that yes, I have tried to lose weight, that yes losing weight would be nice, etc, etc...but my rheumatologist was going on about it as though it were the sole cause of my problems.

It isn't. I've always been on the bigger side, but when all this started...when I first got sick...I was in the best shape of my life. I was healthy, and active. I was hiking every weekend and going to the gym regularly, and eating great. And then, I couldn't. I couldn't because it hurt to move, because I was so tired it was painful. My food choices became more and more about what would the quickest, easiest way to feed us, rather than nutrient content and calorie count.

And the prednisone. The fucking prednisone. It makes me so damn hungry that it makes me angry...angry hungry sucks. You can't ignore angry hunger. You must feed angry hunger, but it's insatiable. You never stop feeling hungry with the prednisone.

But, the other drugs for autoimmune disorders have worse side effects, and since there isn't anything life threatening going on, my rheumatologist doesn't want to try them. She does however, want to try a drug that is sort of experimental for my condition. It's approved for other things, but not for immune disorders, which means Medi-Cal is going to fight to not pay for it...but if we can convince them that it could be useful I will be going off the prednisone and trying this new drug.

She also wants me to consider gastric bypass surgery. Because, frankly, being this heavy isn't healthy, and since regular "diets" won't work (see the paragraph above about PCOS and no thyroid) she feels like it's my best and maybe only option.

But, gastric bypass surgery is no joke, my friends. It's fucking serious and would mean things like...no NSAIDS (non-steriodal anti-inflammatories). I'm on high doses of them, just like everyone else with arthritis. But because they are so stomach damaging, and gastric bypass gives you such a tiny little stomach, they are no-nos.

I've been doing research the last few days. I've had an e-mail exchange with the Archeaogoddess, and done a lot of thinking, and I'm so conflicted about it all. Part of me wants to throw up my hands and say "Fuck it, I'm never going to feel better" and curl into a ball in my bed and never come out. But, I'm a mom, so that's not really an option.

I've tentatively decided to get a second opinion, from another rheumatologist. I feel like my current one doesn't really listen to me the way that my GP does, and isn't as invested in helping me as a doctor should be. She is very....unhelpful, and doesn't hear my words. She has a perception of me as this fat chick who just needs to be thinner and everything will somehow magically resolve itself if I were thinner. Except that what's wrong with me made this fat, not the other way around.

Needless to say, this hasn't helped the dark hole of sadness I've been buried in lately. I'm trying so hard to pull myself out of it, but nothing seems to be going my way and that makes getting unsad even harder then usual.

On My Own

Still Whiny

I'm in love with this song....I'm immersing myself in music, in writing, in anything trying to pull myself out of this dark hole I've crawled into.

Wherein I Whine About Being Sick

It's been a long time. I've been in hiding, both here on the blog and in my own life. I've been in pain, been anxious and depressed. I'm currently waiting to feel well enough to go and help one of my cousins with a dehoarding project. Ironic, that I'm the one trying pull myself together to help someone else clean their house when my house looks like someone dropped a small bomb in the living room.

There was a SCENE last night. In capital words with screaming and tears and accusations. We've had this weekend in the works for awhile, my cousin collects stuff in a major way...clothes, movies, crap...just tons of stuff. Shoes she doesn't and will never wear, clothes in sizes way too small that she hopes to fit one day. It's depressing. And this, from me, the queen of the messy house. My mess, though is of a life lived now...not for the someday, "if" future.

Anyway, earlier this week there was an accident...Lily, the rat terrier I've been fostering for months pushed Charlie under the car as I was coming down the hill from my aunt's house. He has a broken pelvis, but with rest he should make a complete recovery. However, it was touch and go, and because the emergency vet didn't get a great x-ray, I spent the weekend thinking I was going to have put Charlie to sleep. It was so scary and awful. Charlie is my baby, my boy...my best friend (well, after the Archeaogoddess, of course). He got me through the break up with the EG. He's the one who is there at night when I'm hurting, when I'm up all night testing the midget's blood sugar, when I have a panic attack and can't find my pills. I love him, and the thought of losing him was killing me.

So, as I've mentioned before stress makes everything worse. Stress causes major flares. I've been flaring all week, and then on Thursday night, the midget had soaring blood sugars that wouldn't correct (fucking adolescent hormones collide with fucking diabetes) and I was up all night...so by Friday morning, I was done in. I slept nearly all day. I was supposed to do my grocery shopping for the meals for this dehoarding weekend, but since I couldn't hardly walk to my bathroom, grocery shopping was out.

So, that led to yesterday, which was nearly as bad as Friday. I was in agony (oh and did I mention the part where my doctor took two days too long to refill my pain meds, so I spent a day in narcotic withdrawal this week, too) and exhausted, but I finally dragged my ass out of the house at around 2 in the afternoon and headed to the grocery store and did not only my shopping, but shopping for the cousin we are dehoarding as well. I had sent a note to my other cousin and my sister-in-law who were coming to help dehoard telling them that they'd better not back out, and I can't say that it was a nice note. I'm not in a good place, and I panicked because I thought that they weren't going to show up, and I've felt so responsible for the one cousin for so long, and I just can't take it anymore. I'm not making it on my own, and feeling responsible for someone besides the midget is wearing on me.

So, of course, the fact that I made a big fuss and then wasn't able to come through didn't go over well. I walked in to a very hostile situation. My cousin was furious that I hadn't made it there earlier, that I didn't call all day and let her know that I wasn't going to be there until then. (Not the cousin we're trying to dehoard, but the other one.) She called me a liar, said I wasn't sick, that I just chose to flake, that I could never be counted on, that I take advantage of everyone.

I flipped. I told her she was a selfish bitch who takes advantage of her sister, and only cares about herself and that I was done. I wanted to leave. I was hysterical at that point. It was an echo of everything that the EG had said to me. It's my constant fear...that people think I'm making this up, that I'm choosing to stay in bed, choosing to not do all the things I want to do.

And then I wonder, how the hell can anyone think that. I was always a flaky bitch, it's true...but I was a flaky bitch who did stuff. I hiked and camped and went on road trips and cleaned my house and went out for dinner with friends. And I'd sell my soul to be that girl again. It kills me when I have to cancel on something because my body defies me. I'm so tired...and it's not the good tired of knowing you've accomplished something. It's an exhaustion that is painful. Breathing takes effort. Typing hurts...not just my joints, but the tips of my fingers, my skin actually hurts.

My sister-in-law made me stay, insisted we all talk it out. And we did, for an hour...but I don't think I made any headway making it clear that I'm sick. That Lupus is real...that I don't choose to stay in bed, that I don't choose to give up everything that matters in my life. There were lots of tears and accusations.

Following, as it did, on this hell of a week, needless to say it didn't help the flare. I'm beyond useless today. The pain pills aren't touching the pain today. I want to scream and cry and I'm holding it together for the midget's sake. I'm contemplating a trip to the ER for a pain shot, but I am terrified to ask anyone for a ride. I can't bear to hear again how I let them down, how I let everyone down all the time, and that even this is just to make people believe me.

And it's stupid. My doctors verify that I'm sick. I know I'm sick, but it took so long to get anyone to believe me that I'm still scared that I'm just crazy, that it's all in my head. This is what chronic illness is, this is what invisible diseases do. I want to wear a sign that says I have Lupus, and Fibromyalgia and RA and no thyroid, and bipolar disorder and panic disorder and it causes me extreme pain and fatigue and a million other symptoms. And the worst part of it...the very worst thing is that I'm never going to get better. I mean, hopefully someday I'll have some sort of remission, or I'll find the right cocktail of drugs to get my symptoms under control, but I'm not ever going to be healed, it will always be a part of me, and looking into the future 30, 40, 50 years down the road and knowing that it'll always be this way...that alone is enough to make me want to burrow down into the bed and never come out...but I do.

Anytime I have any strength I do get out of bed, and I do what I can. I try to live my life the best I can in the gaps between the bad days, the bad weeks, the bad months. I hate that I can't be a good friend, a good cousin, a good mom. I want to apologize for myself all the time, to apologize for the disease, and then I feel like, I'm the sick one, shouldn't someone apologize to me, shouldn't someone come and help me?

I hate being sick, I really fucking hate being sick.

Profound

It's been a rough week. Very, very rough.

I woke up on Friday with a sore throat, feeling slightly congested. I was irritated. A cold? The flu? Why? And why now? My BFF, the Archaeogoddess, is here, in our tiny hometown. For the first time in four years, we are on the same continent, just minutes from each other, and I have big plans to spend a lot of time with her. As much as I can manage. I want to grasp every moment I possibly can. I want to chat with her husband. And I desperately want to meet her baby daughter. It is agony to have your best friend have her first baby when she is so far away. So, I resolved...I just would not get sick. That's all there was to it.

Bring on the tea, and the rest. Think positive.

Useless. Of course.

Saturday I felt worse and by Sunday, I knew it was Strep at best, though I began to suspect it might be worse. I knew I had a doctor's appointment on Tuesday, so I thought I'd suck it up and hold out until then. One of the big disadvantages of small town life is the lack of an Urgent Care facility. Basically, if you can't get an appointment with a doctor if you need one quickly, your only other choice is the Emergency Room. I've been told time and again not to wait too long before making this choice. Doing so puts me in a bad place. My pain levels grow, my exhaustion deepens, and my immune system, always wrong, always misfiring, will completely go haywire.

Monday was horrible. I had a fever. I also had an afternoon planned with the Archaeogoddess her husband and Spawn. But, besides the risk to the sixth month old baby, The Archaeogoddess' brother has just recently had chemo, and though he is now cancer free, his immune system isn't in great shape. I can't justify the risk of that exposure, so I cancelled. And then I hung up the phone and cried. I sobbed and hurt so much. I hadn't felt like that since...well....since the god awful break up with the EG. Maybe not even then. I just felt so angry and hopeless, and so completely and utterly sad.

Being chronically sick has robbed me of so much, and now it's stealing the few precious hours I have to be in the same room with the person I love most in the world, after the Midget. I got home that day from having to accompany my cousin and her daughter to the dentist (long, long story) and took a short rest and woke up and realized that waiting just the 18 short hours to the following morning's appointment was a bad idea. My chest started hurting and I was coughing up green mucus. I could not wait.

At the ER, I was lectured about waiting and diagnosed with bronchitis and a sinus infection. I was given high dose antibiotics, a pain shot and a higher script for prednisone for the week. I went home dejectedly, and a little giddy from the pain shot, and called the Archaeogoddess and told her I'd have to put off the visit, and what with Thanksgiving and all, I might not be able to see her until Saturday.

This morning's doctor's appointment was for my disability paperwork. My doctor wanted to see me before he filled it out, to really get a clear idea of my physical state as it applies to tasks... It was entertaining to hear him complain about the hoops that someone who is sick has to jump through to get the help they need. And then he said something to me that he'd never said before. He looked me in the face and said "In my opinion, you have a profound level of disability."

Profound: a : characterized by intensity of feeling or quality

b : all encompassing : complete <profound sleep> <profound deafness>

I know this. I know that I am unable to do more than the simplest tasks without exhaustion, pain and weakness. Grocery shopping requires two days of rest beforehand, and at least three days of recovery afterwards. Some days, simply showering takes all the energy I have. This has been my reality for quite some time now. And yet...hearing it from a doctor in that definite, declarative fashion was like a kick in the stomach. It literally took my breath away. This is real. I am disabled. A vindication of sorts after years of begging doctors to just figure out what's wrong. And a deep sense of loss.

When I remember the person I was before all this started...it hurts. I miss my old life, my old self, in a physically painful manner. I miss my friends, I miss having a social life. I miss hiking and camping. I miss working, and feeling like I did something that mattered. I miss being able to clean my house from top to bottom in one day. This is what being sick has taken from me.

I know, though, that I am blessed in so many ways. I have so many amazing people in my life who love me. I have my beautiful, fantastic daughter. I am not homeless. I can see and hear, and walk (as long as it's not too far, doesn't have anything to do with stairs and hills and I can rest when I'm done) and talk. It could be worse. But, that knowledge doesn't really make it easier to be sick.

Thanksgiving is my favorite holiday. I love the food, the family. I love the sense of tradition in our family on that day, being together, laughing and enjoying each other's company without the stress of Christmas and all it's commercial burdens. I usually cook the vast majority of the meal. This year, however, I am making only stuffing and rolls. I won't be up early in the morning to get the turkey in the oven. I won't be cutting and peeling sweet potatoes or mashing regular spuds. And I'm pissed because I love doing those things, but I just can't. If I want to have a fighting chance at being able to have a party for the Archaeogoddess on Saturday, I have to rest and conserve energy. I have to accept the reality of sitting on the couch with my heating pad while others cook.

I am so sad. I feel hollowed out and bereft.

Tomorrow, I'll get up, get dressed and smile. I'll go to my sister's house and enjoy a Thanksgiving dinner with her and my niece and my daughter. I'll remind myself of all that I have to be thankful for, and look forward to seeing my BFF this weekend. I'll breathe in and out. But, tonight, I feel profoundly alone, profoundly sad, and profoundly bereft.

A New Anthem

You know how you meet some people and you think they should come with a warning label, up front? I'm probably one of those people. To people who know me well, the fact that I'm a bitch is just sort of how things are...just a part of me. Like the big hair and even bigger ass.

People who don't like me say it like it's a bad thing, and maybe it is. But, I'm a fiercely loyal bitch, so if I love you, I'm in your corner 100% and even though I'm likely to say something like, "You know, you're nice to the point of stupidity..." I'm also going to give you the shirt off my back if you need it and cook you a warm meal.

I'm loving this song right now. It's cheesy and sort of gimmicky, but definitely catchy, and really fun.