my high-horse was so high, i broke my tailbone when i fell off of it.

it's a lot easier to criticize people from up on a high-horse of no experience and lofty ideals. but be careful....high-horses aren't very stable rides through life, and you're likely to end up losing your balance and crashing down to earth sooner or later.

this christmas when i was alone

one thing i took away from christmas this year is that i've shut a lot of people out.

another thing i took away is that seriously everybody seems to have someone....and i cannot even imagine that for myself at this point. it feels so far away, as though it will never happen. and so yes, for the briefest of moments...i  felt lonely.

but otherwise, it was  a lovely holiday. despite my pred taper wreaking havoc on me, there were many joyful moments this christmas.

happy holidays :)

live to live.

the truth is, i used to be all about excuses.

there was nothing that needed to be done that i couldn't excuse off until later. anything that caused me mild discomfort or was at all inconvenient, i had miles and miles of excuses for. like a magician pulling a colored scarf from my mouth, the excuses were never-ending. get a job? i'm in too much pain (oh, if i'd have known what lay in store...what i thought was pain back then was laughable!) go out with friends? i don't want to drive in this weather. i'm too tired. (let me add here that this was before i had ulcerative colitis- i had an illness that had just manifested itself, but it was much less severe) control my (then) explosive temper and not say terrible things to people i loved most when i was angry? it's not MY fault- they egged me on, and besides, i was born with a terrible temper. there was nothing to be done about it.

ha. right.

the truth is, my excuses came from deep within. from a place riddled with insecurity and self-doubt. self-hatred, even. you see, although i was a pro at excuses, i wasn't in denial about it. i knew what i was doing, but being in the "victim" mentality that comes with regular excuse-making, i didn't know what to do about it. all i would do was blame myself for every little thing, and harp on myself for having no self-discipline and being lazy/useless.  i was unhappy and unkind to myself. it seemed like i was in a pit, continually digging deeper to find my way out, even though the way out was clearly right above me. and why? because changing myself would be hard. it would require hard work and effort and help, and i hated asking for help. i wasn't in the habit of making an effort anymore. in a lot of ways, i'd given up.

well, in the past two years i have battled against the lazy tendencies i acquired and the self-hate. largely because i HAD to  at first, and now because i want to. i know that life is meant to be a growing experience for all of us- what would be the point, otherwise?  and it's true, that excuses often times at their core have some validity. i don't think that people just make up excuses simply because they're lazy or scared, the end. but regardless of the validity, WHO CARES? it's acting vs being acted upon...who wants to be owned by their excuses, their circumstances, or the choices of people around them?

the funny thing is, being as sick as i have, i could have so easily taken the "victim's road". i had dozens of excuses tailor-made for me, borne from my illness. but i found very quickly that i didn't want to take the victim's road. i didn't want to keep making excuses. i wanted to BECOME somebody! somebody who came to a fork in the road and kicked down the victim sign before going down the path of a warrior.

i want to LIVE TO LIVE. i went to visit my ninety-eight year old great-grandmother a couple of days ago. jenn and i went, actually. my great grandmother has had a remarkable life. a beautiful life. a life fraught with troubles and pain like anybody else's- but a life that was her own. that she worked for. she owned businesses and was a single mother long before it was accepted that women do those things. she didn't care about what was accepted by society and what wasn't. she wanted to be something, and she worked to become it. and it wasn't easy. but ask her and she will tell you: all of the pain, the tears, the late nights working and everything else...it was worth it. when she talks about her life, she's proud of it. as she should be. she also had a dozen excuses on hand that she could have used in any given situation, but she didn't. and i admire her for it.

one thing my great grandma told jenn and me that night that has stuck with me was this: "live to live." it sounds simple, but she went on- "so many people are living to die. focusing ONLY on what comes next. you're in life right now, you need to live to live! don't live to die!" here she is, my ninety-eight year old great grandmother, with a better memory than my own and a beautiful life behind her, telling me this.

i think i can take her word for it. ;)

beauty in the breakdown

well, here i am two and a half weeks out from surgery.....i feel great!
every doctor i've seen in the past two weeks, goes on and on about number one: how perfect my stoma is (gee...thanks? the stoma nurses even said it looked like a 'model stoma' and they wanted me to model for some stoma convention thing hahaha)
number two: i am freakishly resilient. no one can believe i had surgery so recently and am already moving around and looking the way i do. i can hardly believe it myself. i met with my surgeon on wednesday and he kept saying how great i look. he also took the steri-strips off of my incisions. they are literally the size of the top of my pinky nail, no kidding. they're tiny and when they scar, they'll barely even show. hopefully they show enough that i can still go through with my plan of walking up to someone, lifting my shirt and saying, "you wanna know how i got these scars?" ;) i'm awesome, i know.

i have a date for my next surgery, and a general time period for the third one. when i first met with my surgeon, we talked about doing two-step surgery but i was too sick for that. also, my body had become dependent on prednisone, which inhibits wound healing. so dr. kim wanted to make sure i was totally off of that stuff before constructing the jpouch. so anyway, it's ended up being a three step surgical process. i don't mind. i told him i'm ALWAYS the kind of person who'd rather be safe than sorry. we're talking about not having to have a bag the rest of my life here vs. having to have one. a few months, i can handle. i'm not going to rush or get impatient and raising my chances of something going wrong and being stuck with this bag forever. so yeah. the actual date for my second surgery will be january 29th. it will be another five to seven day hospital stay (the first one was, too but i only stayed four days. what did i say about resilience? :P)

then, i have to wait about six weeks to allow everything to heal and stuff. then they can go in and do the "takedown". they'll connect everything and it will be bye bye stoma and hello normalcy. well, as normal as you can get without a large intestine/colon haha. but yeah...needless to say, i am mad stoked.

the third surgery will end up taking place right around my birthday, actually. happy birthday to me! if everything goes as it should, i could not think of a better birthday present, so if i spend it in the hospital it's fine by me. the third is the "easiest" surgery for me- you are only in the hospital about three days. and then....it will be over, and my life will truly begin.

don't get me wrong- this week has actually been pretty productive, and i'm only two weeks out! i just can't stand sitting around being useless and not doing anything. the first week i took it super easy and slept a ton. this week i've still slept more than i normally do, but i've been going out and keeping busy (aka away from the computer so i'm not just wasting hours surfing the web) as much as possible. it's been great!

don't get me wrong, there have been some annoying things. i've had some bag troubles and stuff, but i have just kind of tried to laugh them off and be patient. i'll only have this until march, you can do anything for just a couple of months, whether it sucks or not. of course...i also have felt SO much better than when i still had my guts, that i would NEVER say that this "sucks". maybe parts of it can, but overall it's awesome and i'm forever grateful for modern medicine, a sense of humor, and a Father in heaven who loves me. and about the best family i could ask for!

too much for words

i had one of those days today where i just marveled over how AWESOME life is, and how great it is to be alive. man...there is nothing like being really sick and having surgery that gives you essentially a second chance at life, to remind you that not a moment of life should be squandered. i have been enjoying every moment with my family. i have been reading a TON these last few weeks and loving each adventure that comes with each new book, appreciating the beauty of language and words and well-woven stories. i'm enjoying every bite of food i take that doesn't result in me feeling like the walking dead. my mom decorated our house and it looks ridiculously amazing, like something out of a catalog. i can sit in our family room and look at our beautiful tree, with the ornaments that we've collected and accumulated over many years...it's SO cool. my body is weak right now but every day it's getting stronger, and tapering off of prednisone i feel like myself again mentally and it's such a blessing because i LOVE myself! i am a fun, happy and hilarious person and it's great to "be back"!

oh and sidenote- tonight my dad was assisting me in some ostomy stuff and we were both cracking up over the dorkiest stuff. i love my dad. he has really been my champion and advocate and friend through all of this in the most amazing way, and i am so grateful. i am so loved, and i just want to spend my time and energy making sure that everyone who loves me, feels just as loved as i do.

merry christmas season!! life is good. and on bad days, it will ALWAYS get better.
promise :)

post-surgery madness

so i'm sitting here in my hospital bed....and i want to go home!!

i know, i know, no rush....i am actually in a lot of pain today, and switched from the pain pump to oral pain meds. but my doctor assures me, this pain will actually GO AWAY. it's hard for anyone to understand, i think, the fact that for the past few years i have been in pain EVERY SINGLE DAY. pain that just got more and more severe, and never went away. all i could do was treat the pain. mask it. nothing actually got rid of it. so for me to know that this pain is temporary, is amazing. in fact, i don't think i actually believe it. but as the days go by and the pain gets better, i know i'll be able to believe it and man will i be happy!!

i would write more about the surgery, but i'm kind of scatterbrained right now. today has been difficult, last night was difficult. i don't want to get into it until i can do it justice, but i had a bad reaction to a medication and it made for a pretty crazy night.

HOWEVER....that is over. most of  today has been great and i intend for the night to be great as well! i really want to make some progress reading a new book i have, and i'm "playing pool" and chatting with my dearest friend alyssa. man, i just have to pay tribute to her in this blog right now. she has been the best friend anyone could ever ask for. she has been here for me no matter what and has been so amazing....that i DESERVE a friend like her baffles me. i absolutely love her and i hope to be as good of a friend to her and to the other people i love. the world would be a better place if we all had friends like that!!


anyway, i'll write again soon later. hopefully the next time i write, i write from home! everything is going well and my surgery and recovery has been pretty much perfect, so what else can i ask for?

love to any and all
:)

i'm ready!

tomorrow's the day! i go in at five-thirty am. i'm his first surgery of the day, which i think is good! i've been on a liquid diet for the past two days, and after midnight tonight i can't have ANYTHING, including water. and the first few days after surgery i won't be eating much, either. they'll slowly work me up to eating normally. i'm already missing food :P

i have everything ready and prepared that i need, except for my bag of stuff i'm taking with me. i've got all of the technical registration stuff taken care of. i've been shaking nonstop since the nurse called me and told me my surgery time. i don't think i'll even end up sleeping tonight, because we will have to leave nearly an hour early to get there on time. lately it's almost impossible for me to fall asleep and i stay asleep for maybe an hour at a time. and every morning, it takes me at least an hour to feel "normal" after waking. i just don't know that i want to have to do that whole process at like four am, so yeah...i may be pulling an all-nighter here. i'll be sleeping plenty the next few days anyway.

i've had people reach out to me in such amazing ways, and gotten letters and messages from people who i didn't know were thinking of me at all. so many uplifting words and so much support. i'm really blessed to have so many people who care about me. i'm determined to get through this smiling, no matter how much pain i'm in and how much i hate having a bag at first. trust me, i've already thought of a lot of bag jokes and whatnot because i never want to be someone who takes themselves too seriously to laugh at themselves. hmm. that sentence reads weird. anywho! i made a video to remind myself that this IS worth it and the right choice, so that if i'm miserable and doubting myself at any point from here on out, that i will remember that i WANTED to do this. more than that, that i NEED to.

i've been reading a lot of blogs and watching videos of people who have gone through this. it's a great comfort, and i think i need to document all of this better myself, because if it could help someone else that would be amazing. i'm nervous about the pain, and i've read lots of accounts where people say that they had a nurse be stingy with pain meds. i told my mom she has to fight for me if necessary in a situation like that because i don't want to be dying of pain, and have someone be all weird about it, and be unable to speak for myself because i'm too out of it. so i have my parents to speak for me and make sure that i'm taken care of. i'm sure i will be, it's just nervewracking to read these kinds of things because yeah, it's major surgery and it's already a LOT to go through. i don't want there to be weird little things to make it any worse. i just want to get through it as soon as possible. i also told my mom i really don't want to be pressured by anyone to leave the hospital if i feel it's too early. i've learned over the last two years with this illness, that i'd rather be safe than sorry. if safe means a longer hospital stay, so be it. but this is helping shape the rest of my life and i want it done right!

anyway....i'm going to get my stuff together for tomorrow. i've spent half of the day in the bathroom, i'm in a TON of pain right now and the pred side-effects are more annoying than ever. so....i'm ready for this.

two more days....

today was another great and hopeful day.

my little brothers said we have to have a feast party when i am out of the hospital and allowed to eat again ;)

i have some goals set for my hospital stay...nothing crazy! but i think it'll help me retain my sanity to have some.

what else...hmm...i'm not sure. other than, i'm happy. i have faith that everything is going to work out. i know so far everything has happened for a reason, and everything from here on out will have a reason behind it, too. so....in God i trust :)


ps....anyone so inclined can come visit me in the hospital. IF you promise to come bearing gifts of chocolate. that i won't be able to eat at first anyway. it's okay, i'll enjoy just staring at them.


thuh end

He can knock, but YOU still have to answer...

as surgery draws nearer and nearer, i find myself swinging from feeling to feeling about it like an overzealous kid on monkeybars.

today i watched a video on youtube where a girl was showing how to change her bag. she's a young girl, younger than me. the whole time, she keeps up this bright and positive attitude. even when she's talking about how the last bag she used didn't agree with her skin and so she ended up with a gnarly rash on her stomach.

a couple of minutes into the video, i started to cry. and it became a panic attack, something that just rose up inside of me and refused to quell. the amazing thing was, though, this group of people in my life who were there to offer their support. what could have been a major panic attack stayed a tropical storm ;) one of my best friends linked me another video of the same girl, talking about how great her life is seven months after her colectomy. a life she hadn't even DREAMED of when she was sick, because it seemed so impossible. and now, she's living that life.

within a matter of minutes, i went from panicked and sad, to excited. i started thinking again, as i often do, on the list of things i will be able to do again after surgery. sometimes, the list sounds like a trip to japan or something because it's so hard for me at this point to even imagine being able to go camping, work a full day without crashing for six hours after, being foggy in the head from the prednisone. it almost sounds like a fantasy list- but i know i'll be able to do all of it.

and so i spent the rest of the day completely stoked. i wrote a few entries back about how i was disappointed in how i'd been handling this whole situation lately. i can proudly say that every day since the day i wrote that blog has been night and day difference better. not everyone will get what i'm saying, but to put it simply, He was waiting on the other side of the door, and only i could open it. once i did, aside from the here-and-there short lived panicky moments....i have felt more positive, hopeful and cheerful in my situation. i am handling it the way that i want to be handling it.

i really am looking at my surgery as a new beginning i've been offered. i've made it this far!

hopeful days

today has been different. it has been hopeful. i have been drawn a bit out of my complete self-focus, thinking about situations of those near and dear to me, and being reminded that loving them is the true antidote to the selfishness that has swept over me as of late.

 today was my final surgical consult. my nana and papa, gram and dad accompanied me.
they all volunteered to. it was touching that they wanted to make the trek to salt lake with me and know everything they can about what i've been going through/am about to go through.

yes, today was hopeful. just in time for thanksgiving.

i'm glad :)

remember yourself

this last while has been exceptionally, extremely meh.

and i am so disappointed in myself that it has been.

for some reason a couple of months ago, i just stopped. stopped pretty much everything in my life. it's like my personality shut off or went into hiding or something. unless i was at work. the last couple of months, i have loved being there and being with my kids almost more than ever.

but at home, everywhere else....it's like i've gone into hibernation or something. i have spent a lot of time reading, which isn't bad...but when i'm NOT reading, i feel in a daze almost constantly. i am short-tempered, bored nearly all of the time, have barely any interest in music or things i used to enjoy....

i'm disappointed in myself.

the thing is, i've been told many times that unfortunately, this is probably 95% the fault of prednisone. it's such a wicked drug. i've been on it for a few months straight now, at a pretty high dosage, because it is the only thing that has kept me out of the hospital and alive. but it has ugly psychological and physical side-effects. i've heard several doctors refer to it frankly as "poison". my temper has been especially hard for me to deal with, because i feel like i'm constantly at this boiling point, waiting to explode.

and see, it doesn't matter to me if this has happened because of prednisone. it doesn't matter. because when you read stories about people going through horrible, hard things...and they smile through it anyway, and still love life and are a joy to those around them....you're always hoping that if something horrible happened, that would be you. i think there's a part of all of us that thinks it would be us no matter what, because we want to think better of ourselves than being the person who succumbs to being depressed and glum and maybe even bitter.

unfortunately, that's been me for a large part of the last while. in december i will have been sick for two whole years, but for the first year and a half of that time, i had a pretty good attitude. i kept up with life more than my doctors said i really had the capacity for. i smiled and was pretty cheerful through the pain, and the endless time in the bathroom, and the ugly side-effects of prednisone and the other drugs i've had to take.

but lately, i've let myself down. the time i recognize myself best has been when i'm at work, with my kids. when things have been hard, i have had them to look forward to. i know they love me even when i'm tired and puffy-faced and rundown. today was my last day at work until after i recover from surgery, however. it was really hard for me to go for many reasons, the above being one of them. it's not really for that long, and i'll be better than ever equipped to do my job after the surgery...but this is exactly what i'm talking about...i am just not getting through all of this as well as i'd hoped i would, and that's hard to face and admit.

i have exactly a week until surgery. i don't want to spend my last week before then like a drone. i really want to try and enjoy myself and be happy because this is almost over, and i don't want to just sit here miserable until it is. there are lots of people who have it worse. there are people who have fought really hard to have a few months more of life. i NEED to find value and joy this last week of this and during my recovery, or i'm going to be really disappointed in myself.

i need to make a list for thanksgiving of everything i'm thankful for, including and especially a workplace that has been SO understanding of my illness and that is welcoming me back when this is over. i have the love of all of those kids to pull me through. i want to be able to be someone worthy of that love.

i need to remember that.

looks like you CAN repeat the past.

it is so many levels of lame when someone who SHOULDN'T be able to hurt you anymore, still can.

it's worse when it takes you by surprise. and really, it only happened because it was like being kicked when i'm down.

it still sucks.
 

feels like my life is a countdown these days...

everything is building up to my surgery. and it's only a week away.

i'm SO glad i'm not still waiting until december eleventh. i am honestly not sure i would have made it until then. even now, these last few days have been perilous in many ways, and the days that stretch before me are slightly ominous with the whole, "what could happen" feeling that keeps trying to take over my brain.

good thing my brain's militia are ALWAYS on the alert to take down those bad-guy redcoat thoughts ;) whatever would i do without them?


so...counting down. in a week (and a day, to be fair) my life will begin to change! i'm sure in two weeks i'll be in some heinous recovery stage and booing at this cheery blog....
but, all of that will be temporary, unlike my UC.

the REAL countdown isn't even the surgery...well, just not all of it. it's the upcoming spring/summer where i will finally be able to do the things i've been missing. and more.

countdowns, countdowns galore! now you see what i need them for ;)

you learn who your true friends are when faced with a deadly health situation.

i really didn't let myself think that too much, until it became so obvious. but mark my words on this. "friends" change colors and words when your life is about surviving and gets cut down to the very bare necessities of life rather than the fun and the excess and the things that sometimes you have to learn to do without because you just can't handle them right now, when you're fighting for your life.
 some friends are truly not friends at all, they cannot be there for you with this. it can be disappointing and it can hurt, but you don't have the energy to spare on getting all righteously offended either- so you move on.
or else you should.
but i digress, and go on.


life is, as they so fondly say....about to change.

at this point, everything and anything and all there is in my life and existence is all leading up to this one thing:
THESURGERY.

the time until the surgery, the next couple of weeks....they're nothing really. they're time that glides on by with no significance. nothing real can happen, life will begin again, with the surgery.

so for two weeks i await in limbo, as patient as i can.

once the first surgery is over, there is recovery. there is the realization that i won't have to plan a life around being deathly ill. then, the final surgery will bring the "normalcy", and i will be ready for it when it does. i will be ready to embrace waking up early in the mornings, exercising before work...working long days and spending long nights out reclaiming a social life i've let slip since this illness took over two years ago. i have a lot of reclamation to do once the surgeries have begun and my life begins to be given back to me, piece by piece.
i have to be ready for it. i am ready for it.
there will be no wasting time.

i'll be back and ready to LIVE.

and in this living, i will have a list of Things Most Important. things i've already missed. things i will never leave left undone because of some excuse- no. after having such a major and life-changing surgery, excuses are no longer going to be a part of my existence so long as i can help it.

i want that solid group of people around me who have cared even when my health limitations and fighting this war my body is literally waging upon itself, has been consuming me. you learn who really cares for you when they stick around through stuff like that. and to those people i say, you know i will ALWAYS be there for YOU. i most certainly hope that any and all lessons i have been meant to take away from this whole thing, will make me someone who can be valuable to another person who ends up suffering, whether in situations extremely similar to my own, or situations completely different but that i can STILL understand from impulses born through the empathetic nature i've been blessed to acquire.
i just hope, as i go into surgery as literally being born again...starting life over, a clean slate...that there are a couple of people i can take into that life with me. people who decided to stick around because they thought something worthwhile was buried in me all along, or buried in a connection we could potentially have someday.

basically, i could go it alone....but i'd rather not. if you have stayed my friend through all of this, including times when i may have intentionally alienated myself from people because it was the only defense mechanism i felt fluent enough to cope in....well....if you're still around when i begin my new life,
i hope you join me. i hope my life can touch others' for good, and that theirs can influence mine. i want to embark on a full life, with a lust for freedom and adventure and just JOY that have been smothered down by my body's raging internal war these last two years.

i am ready to live again. i invite you to join me. i hope to find that i have maybe a couple more true friends than i think. and regardless of whichever way that sways, i am going to have more. i will have more because i intend to seek out those kinds of friendships and connections, because they make life rich. and i am going to build a rich life. a full life. i won't waste anymore time.

just two weeks, and everything will change. two weeks and i'm starting afresh. my hopes, dreams and goals will no longer float above my head, barely slipping from my grasp. i will hold them all close, and never let them go.

i am going to live, live, live.

LIVE with me!

didn't think i'd get here....

in just a month and a few days from now, i am having the j-pouch surgery.

it is the first in a two-surgery process. the first one is supposedly the hardest...i will be staying in the hospital for a week or so while i recover. it's so close to christmas...i don't know what kind of condition i'll be in at that time. it is a MAJOR surgery, and i'm terrified.

but i'm also hopeful. if all goes well, it will give me my life back. and i really want my life back.
this is the end of the road. i have not responded to any other treatments and my doctor told me that it is inevitable to get colon cancer with how sick i am, it's just a matter of time. he also said the treatments i am taking/doing are poisoning me...i already knew that, but having it reiterated was good...because i kept trying to talk myself out of having this, and i literally can't. if i don't get this surgery, this disease/the treatments will kill me.

all i can think about is all of the blessings i've had. i'm thinking about next summer, and how i will actually be able to go CAMPING by then. i think about being able to work full-time with my kids without getting so run down that i end up sick every two weeks. the surgery is scary...they are taking out my entire colon.
but i will be able to feel twenty-four again. to have some kind of life and move forward.

so, forward is where i go.

there is no i in we.

sometimes i wish i could stop thinking. holy crap.

lately i've just been all in a dither over various situations in which somebody couldn't seem to deal with how antisocial and "feelingless" i am, and wanted/tried to change it.

(ps, those situations involved someone ending up lonely- and it wasn't me. and only partly because i don't get lonely) hahaha

no but really...i've been thinking a lot (read:toomuch) about things that are inherent inside me as a person, part of my core makeup that are simply different, and things that aren't and need to be changed. i've realized working with kids how differently wired we all are as people. there are a LOT of extroverted people in this world. people who crave other people's validation, who need each other. i'm learning that not only am i NOT like that, but there's nothing wrong with the fact that i'm not. my wiring is different, not busted. (well, at least not in those ways hehe)
it's a weight off of my chest, it's helping with my guilt issues...that i've had as long as i've been aware of being alive...so pretty much since i was a really young child.

it's a good thing to know. even better to know that it will never change because it's part of my actual being- and what's more, i don't WANT it to change and that's fine. more than fine actually. awesome.
the end.

FACE. PALM.

seriously. ugh.

here's something-

it takes a LOT for people to mean something to me.
and i don't say this proudly, or like i'm so cool or whatever. i don't know that it's necessarily a bad thing, but i don't know that it's good, either. you don't want to have "friends" that you don't really care or think about. and don't get me started on dating/relationships...people who jump in WAY too fast and freak the living hell out of me, because they don't understand what i've tried to tell them...that for me to care at all takes TIME. and it takes even longer for me to really be interested in some guy, or form what i feel is a true bond. and until then, well...they could be anybody.
 i should probably stop there, so that i don't sound completely heartless. Ha.
/endmusing

um, didn't i say that-

i did forget, in my years of being married...the many struggles i had during that time...just HOW independent and solitary i really am. and all i keep meeting now are people who DON'T get it. who want to change it.

it's a basic part of who i am...and it's not going ANYWHERE.

thxbye.

something's gotta give

sometimes i really think, other people's lives must be so simple. it must be simple to wake up NOT in pain, not sick to your stomach. NOT having to fight a battle to get yourself out of bed. sometimes i see people on facebook or whatever talking about their problems, and i wonder how it would really be to have those problems. what if my biggest issue every day was if i was going to make it to the gym after work, or who i was going to hang out with...or even some assignment for some class...those are all normal twenty-four year old person problems. what would it be like? the sad thing is, i can't hardly remember what it was like before this and it's only been (almost) two years.

at risk of sounding grandiose, let me say here that i realize there are obviously people who have it worse than i do. lots of people. but lately i've felt i have it pretty bad. a year ago i was able to fight this battle without it draining me both physically and mentally/emotionally. i used to try and just do everything anyway, even if i didn't feel up to it (which wasn't exactly smart OR what my doctors wanted me to do, but i digress)
these days, i just can't. my body is tired from this battle. since i first got sick, i haven't really made any improvement. the amount of damage and stress from this is huge.

i'll be meeting with a surgeon soon. all of my doctors recommend it now. even the ER doctors i've seen. a year ago, surgery was something i wouldn't even allow myself to consider but now, after living this way with absolutely NO break from it, NO improvement...i think it's time to look into it. one of my doctors told me that with the absolute crappy (no pun intended ha) quality of life i've had for the last nearly two years, surgery could seem like a miracle for me. i could be like a normal twenty-four year old. i feel like so much time has been wasted sick and i don't want to let anymore slip by. i'm afraid of surgery, but i'm afraid of continuing to live life like this. i honestly don't know how long i can keep it up before something gives.

so, that's that.

what then?

if i end up having surgery, i feel like it will ruin everything.

i don't want to miss out on things. i don't want to feel ugly and unattractive having such an "embarrassing" kind of surgery.

ugh.

i lost my heart i buried it too deep, under the iron sea

i've realized that a LOT more of my apathy stems from/is the result of self-preservation than i'd previously allowed myself to know.
things have happened lately that have broken the hearts of people close to me. the wrenching, all-consuming pain i feel in witnessing THEIR suffering is so much worse than anything i myself actually experience. it tears me apart and tends to consume me if i'm not careful. it  makes perfect sense to me that i avoid caring about people, remain aloof and detached. when i REALLY love and care about people...i feel their sorrows and pains so acutely, to a point that i think is more than a little excessive.
i need to find a better balance between apathy and being SO sensitive to the pain of my loved ones that it actually disrupts my life. there's nothing admirable about going through life completely removed and apathetic like i tend to do.


just a thought :)

timshel

John Steinbeck, East of Eden

“Do you remember when you read us the sixteen verses of the fourth chapter of Genesis and we argued about them?”

“I do indeed. And that’s a long time ago.”

“Ten years nearly,” said Lee. “Well, the story bit deeply into me and I went into it word for word. The more I thought about the story, the more profound it became to me. Then I compared the translations we have—and they were fairly close. There was only one place that bothered me. The King James version says this—it is when Jehovah has asked Cain why he is angry. Jehovah says, ‘If thou doest well, shalt thou not be accepted? and if thou doest not well, sin lieth at the door. And unto thee shall be his desire, and thou shalt rule over him.’ It was the ‘thou shalt’ that struck me, because it was a promise that Cain would conquer sin.”

Samuel nodded. “And his children didn’t do it entirely,” he said.

Lee sipped his coffee. “Then I got a copy of the American Standard Bible. It was very new then. And it was different in this passage. It says, ‘Do thou rule over him.’ Now this is very different. This is not a promise, it is an order. And I began to stew about it. I wondered what the original word of the original writer had been that these very different translations could be made.”

Samuel put his palms down on the table and leaned forward and the old young light came into his eyes. “Lee,” he said, “don’t tell me you studied Hebrew!”

Lee said, “I’m going to tell you. And it’s a fairly long story. Will you have a touch of ng-ka-py?”

“You mean the drink that tastes of good rotten apples?”

“Yes. I can talk better with it.”

“Maybe I can listen better,” said Samuel.

While Lee went to the kitchen Samuel asked, “Adam, did you know about this?”

“No,” said Adam. “He didn’t tell me. Maybe I wasn’t listening.”

Lee came back with his stone bottle and three little porcelain cups so thin and delicate that the light shone through them. “Dlinkee Chinee fashion,” he said and poured the almost black liquor. “There’s a lot of wormwood in this. It’s quite a drink,” he said. “Has about the same effect as absinthe if you drink enough of it.”

Samuel sipped the drink. “I want to know why you were so interested,” he said.

“Well, it seemed to me that the man who could conceive this great story would know exactly what he wanted to say and there would be no confusion in his statement.”

“You say ‘the man.’ Do you then not think this is a divine book written by the inky finger of God?”

“I think the mind that could think this story was a curiously divine mind. We have had a few such minds in China too.”

“I just wanted to know,” said Samuel. “You’re not a Presbyterian after all.”

“I told you I was getting more Chinese. Well, to go on, I went to San Francisco to the headquarters of our family association. Do you know about them? Our great families have centers where any member can get help or give it. The Lee family is very large. It takes care of its own.”

“I have heard of them,” said Samuel.

“You mean Chinee hatchet man fightee Tong war over slave girl?”

“I guess so.”

“It’s a little different from that, really,” said Lee. “I went there because in our family there are a number of ancient reverend gentlemen who are great scholars. They are thinkers in exactness. A man may spend many years pondering a sentence of the scholar you call Confucius. I thought there might be experts in meaning who could advise me.

“They are fine old men. They smoke their two pipes of opium in the afternoon and it rests and sharpens them, and they sit through the night and their minds are wonderful. I guess no other people have been able to use opium well.”

Lee dampened his tongue in the black brew. “I respectfully submitted my problem to one of these sages, read him the story, and told him what I understood from it. The next night four of them met and called me in. We discussed the story all night long.”

Lee laughed. “I guess it’s funny,” he said. “I know I wouldn’t dare tell it to many people. Can you imagine four old gentlemen, the youngest is over ninety now, taking on the study of Hebrew? They engaged a learned rabbi. They took to the study as though they were children. Exercise books, grammar, vocabulary, simple sentences. You should see Hebrew written in Chinese ink with a brush! The right to left didn’t bother them as much as it would you, since we write up to down. Oh, they were perfectionists! They went to the root of the matter.”

“And you?” said Samuel.

“I went along with them, marveling at the beauty of their proud clean brains. I began to love my race, and for the first time I wanted to be Chinese. Every two weeks I went to a meeting with them, and in my room here I covered pages with writing. I bought every known Hebrew dictionary. But the old gentlemen were always ahead of me. It wasn’t long before they were ahead of our rabbi; he brought a colleague in. Mr. Hamilton, you should have sat through some of those nights of argument and discussion. The questions, the inspection, oh, the lovely thinking—the beautiful thinking.

“After two years we felt that we could approach your sixteen verses of the fourth chapter of Genesis. My old gentlemen felt that these words were very important too—‘Thou shalt’ and ‘Do thou.’ And this was the gold from our mining: ‘Thou mayest.’ ‘Thou mayest rule over sin.’ The old gentlemen smiled and nodded and felt the years were well spent. It brought them out of their Chinese shells too, and right now they are studying Greek.”

Samuel said, “It’s a fantastic story. And I’ve tried to follow and maybe I’ve missed somewhere. Why is this word so important?”

Lee’s hand shook as he filled the delicate cups. He drank his down in one gulp. “Don’t you see?” he cried. “The American Standard translation orders men to triumph over sin, and you can call sin ignorance. The King James translation makes a promise in ‘Thou shalt,’ meaning that men will surely triumph over sin. But the Hebrew word, the word timshel—‘Thou mayest’— that gives a choice. It might be the most important word in the world. That says the way is open. That throws it right back on a man. For if ‘Thou mayest’—it is also true that ‘Thou mayest not.’ Don’t you see?”

“Yes, I see. I do see. But you do not believe this is divine law. Why do you feel its importance?”

“Ah!” said Lee. “I’ve wanted to tell you this for a long time. I even anticipated your questions and I am well prepared. Any writing which has influenced the thinking and the lives of innumerable people is important. Now, there are many millions in their sects and churches who feel the order, ‘Do thou,’ and throw their weight into obedience. And there are millions more who feel predestination in ‘Thou shalt.’ Nothing they may do can interfere with what will be. But ‘Thou mayest’! Why, that makes a man great, that gives him stature with the gods, for in his weakness and his filth and his murder of his brother he has still the great choice. He can choose his course and fight it through and win.” Lee’s voice was a chant of triumph.

Adam said, “Do you believe that, Lee?”

“Yes, I do. Yes, I do. It is easy out of laziness, out of weakness, to throw oneself into the lap of deity, saying, ‘I couldn’t help it; the way was set.’ But think of the glory of the choice! That makes a man a man. A cat has no choice, a bee must make honey. There’s no godliness there. And do you know, those old gentlemen who were sliding gently down to death are too interested to die now?”

Adam said, “Do you mean these Chinese men believe the Old Testament?”

Lee said, “These old men believe a true story, and they know a true story when they hear it. They are critics of truth. They know that these sixteen verses are a history of humankind in any age or culture or race. They do not believe a man writes fifteen and three-quarter verses of truth and tells a lie with one verb. Confucius tells men how they should live to have good and successful lives. But this—this is a ladder to climb to the stars.” Lee’s eyes shone. “You can never lose that. It cuts the feet from under weakness and cowardliness and laziness.”

Adam said, “I don’t see how you could cook and raise the boys and take care of me and still do all this.”

“Neither do I,” said Lee. “But I take my two pipes in the afternoon, no more and no less, like the elders. And I feel that I am a man. And I feel that a man is a very important thing—maybe more important than a star. This is not theology. I have no bent toward gods. But I have a new love for that glittering instrument, the human soul. It is a lovely and unique thing in the universe. It is always attacked and never destroyed— because ‘Thou mayest.’”

when you no longer wish to try

i've had a rough and pretty terrible last little while.
i won't really go  into it, but i've been letting go of a lot, and giving up hope.

i detest myself for doing so, but all of the fight has gone out of me. i'm sad, and despise how hopeless i feel. but it seemed like trying to overcome it just made me feel it more acutely...so i've just stopped.


i don't know how often i'll be writing from here on out, because there's not a lot of point. i just figured i'd be honest.

fun, fyi.

i went and met up with some girls tonight at red mango. we sat and talked for a couple of hours, and it was great.
i'm not really a "girl's night" type of person typically. i mean, i suppose i can be but i struggle finding more than one or two girls i want to really spend much time with, so it doesn't usually happen. tonight though, was so much fun. the girls were smart, funny and dynamic. we had lots of laughs and good conversation, and this was the first time we'd all hung out together and my first time meeting one of the girls. it was lovely to have an evening of conversation on a deeper level. it reminded me that i don't have to be so absurdly guarded with everyone, because sometimes you connect with people when you give it a chance ;)
one thing i love about good conversation is the different perspectives you can glean from it. it helps me remember that EVERYONE is living out their own experience here on this earth, and that there is a lot you can learn from people. i love being around people who are strong and positive- being in their company brings you up in ways you almost don't realize until after the fact. it helps to remind ME to be sure that when people leave MY company, they feel uplifted or happy or something positive.

i'd say goodnight, but i'm pretty sure i won't be sleeping tonight once again...so...."good evening" (there's a movie reference in there hehe but i'm not sure anyone will get it because i quote the weirdest nonsense from movies)

anyway......kbye.

what i want to know is,

when will i be free?

a few things...

first- back at work after my two week summer break. all i can say is, YAY!!!! x's a million billion. clearly math is not my strong suit. but my point is, i am stoked. i'm going to be with some new kids and new coworkers and i am so jazzed!! the more people i get to know at my job, the more i love everybody. and the same goes for the kids! i can't wait to get to know them all!

secondly- dexter. oh, dexter. and michael c hall. i don't know what else to say. several of the girls at work and i were talking about it today and i am NOT alone in my adoration hehe ;)

and thirdly- life. is. great.


the end.

solitary: pt 2

the thing is, i like being alone.
there is a huge difference between alone and lonely, and i am never lonely.

but being alone is nice. it's clean, it's uncomplicated.

people are messy, and they complicate things.
attachments are messy and complicate things.

it's simpler to remain aloof and detached.


and i do it well.

to do hard things.

there's something that makes me very thankful for my diagnosis. it's that i've learned to do hard things. and to do them, not looking for praise or recognition, but because it's necessary. and to do them without complaining, without being angry. without feeling like it's unfair.

of course, it's taken me awhile to feel this way. i can remember vividly last winter, the severity of my flare quadrupled and i was FAR from serene about it. i freaked out, i complained, i hated the "unfairness" of it all, etc etc. i was working only part time, but i remember mornings when getting out of bed seemed impossible. nights where i slept maybe two hours and then had to go to my physically demanding job the next day. it was hard. and it didn't let up. and because of that, i learned to do things that are hard- something i really think our generation is lacking in.

don't get me wrong, i don't intend for this post to be holier-than-thou or preachy. if it weren't for my diagnosis and being FORCED to learn to do hard things, i wouldn't be so used to it or so accepting of them myself. but that's the point. i hear people say all of the time how they don't want to do something because it's "hard". they hesitate to enter certain circumstances because they'll be tough or challenging. and they have a choice to avoid that.

ever notice how tough your grandparents are? your great-grandparents? your parents, even? there was a time (and there are still places, of course but i'm talking about US HERE) where there wasn't necessarily a CHOICE in matters that were difficult or hard. there were hard things that had to be done for survival. to thrive. because there wasn't an "easier" way yet. and people just DID THEM. because what was their other option? there wasn't one. if it was a freezing morning, in the middle of a snowstorm and the cows had to be milked--THEY MILKED THEM. what else could they do?

THIS is why i'm grateful for my diagnosis. because it hasn't given me much of a choice. those mornings i mentioned where i hadn't slept, felt like i'd been hit by a train, was in so much pain it was hard to walk, couldn't stay out of the bathroom, etc but went to work anyway?? it was either that, or stay in bed and have not even HALF of a life. which i did, by the way. there were times i just stayed in bed. times i was ordered to by my doctor, and times i just didn't have the strength to do anything else. but spend enough time in bed and you start to get restless, no matter how dead you feel. i had the choice to live less than half of a life and avoid "hard" things that caused me more pain and sickness than i was already experiencing....or to try and live as much of a life as i could be DOING those hard things.

i chose to do them. some days, i choose not to. it's not always easy to do things that are difficult, even when a circumstance like mine makes almost EVERYTHING difficult. but then you go to the cancer center for your treatments. you meet people in their seventies and eighties battling cancer who can tell you stories about the wars they've fought. they're not afraid of hard things, and because of that, they're fighting.

we should ALL be fighting too. so things are hard? so what. LIFE is hard. but that's also why it's rewarding. let's buck up and face it.

charity

i hate that i feel like i LITERALLY need it right now. it's so hard to feel so NOT in control of my health and financial situations. i'd spend my LIFE at my work if i could, i love it so much. there is a deeper and deeper hole i am falling into with every infusion, specialist visit, all of my medications...i just don't know how i'll ever get out.

far from simple

life is such a kick! where do i begin? my life hasn't been so much about events as it has been epiphanies. i've been paid some of the most wonderful and genuine compliments lately and it's really boosted my spirits. i've had thought-provoking discussions (especially with my lovely jenn) and been reading some great stuff.
not to mention, i work with literally THE greatest people imaginable and with kids i love like they were my own. i've reconnected with old friends and enjoyed their company, and made new friends as well.
i've been writing and back in my creative mindset much more than i have been in the last few years. it's wonderful to have that drive and passion back full-force.
my health is still a rollercoaster but seems to be at a turning point right now. life is hard but it's amazing. i'm so much more of a person than i was just months ago, and i'm so grateful.
life will continue to bring challenges and joy.
i will continue to welcome them both.

ps- mere christianity is a MUST READ. cs lewis is just...beyond words.

living beneath the Radar

here goes one of those seriously awkward way-too-open blogs. what about, you ask? why, my weirdo self-image. sit down. make some tea.

here it is. i have this fear. that nobody i'm interested in will EVER be interested in me. because i swear....nobody is. ever. it's a miracle i ever got married in the first place.
(HERE is where you add in a pun/joke about how that didn't last. i couldn't think of any good ones)

back to business;

i'm also afraid i'll never be interested in somebody ELSE for longer than say...a week. i've always had a problem with that. but it's worse now. (i've been diagnosed with adult add so maybe i have...birds and bees add too? ha)

i've had this slight....inclination toward someone for awhile. and it just doesn't matter...because i am like that ultra unnoticeable girl. or maybe i radiate vibes of scariness. who knows. all i want is something simple. an association. to know that not every association i have, will be like what i had with my ex. to know that maybe somebody thinks i'm awesome, who i think is awesome too. nothing has to come of it. i'm a Stage Four LONER. but i just need to know....

yep...hey, i'm a woman. men notice me. men that i notice back.

because seriously....it's like my whole world exists beneath The Radar here.


the end.

that whole thing where you beat yourself up...

i have been aware for quite some time, that i am a person who never forgives myself for anything.
well, let me amend: i never forgive myself for anything, until i feel i have "made up for it" somehow, or suffered enough for it...if that's even logical.

funny enough, i am pretty quick to forgive other people. i wasn't always; i used to hold a grudge like nobody's business and (for some reason) was very proud of it. i could hold onto something somebody said or did to me years ago until the world ended...was this some great quality or virtue? no. what a weakness. nonetheless, it was something i did.

then over the last few years, things changed. see, along with holding a mean grudge i also used to be very judgey mcjudgerson about people. i made fun of people for being fat, for being too skinny, for acne, for getting married young, for getting divorced. i was the first to believe a rumor about somebody being a "skank" or stuck-up, and i never apologized for any of it. there was a part of me that always felt bad, but it was easy to suppress. being that way was easy- i never had to feel bad for anyone or care too much about anybody because i'd just let myself focus on their perceived "flaws" enough to think that they must have "deserved something" somehow.


i know, i sound like the devil. bear with me. the story changes.

like i said, over the last few years things have changed. for one thing, i noticed that nearly EVERYTHING i'd ever made fun of somebody else for seemed to be happening to me. i got married young. it was an unhappy marriage. i gained a bunch of weight. my marriage ended. in the middle of all of this, pretty much everything i thought i was and everything i'd built "myself" upon crumbled. when the dust settled, i no longer had my looks, my husband, the sarcastic and cynical wall that had protected me had disintegrated and there i was....like a burn victim with fresh new skin...i had a life- a whole person to rebuild.

and it hurt.

around this time i began working with the kids at foothill and got sick, and the rest is history. or at least, i've written about it so much that most people probably aren't even reading anymore and are thinking "seriously, you're sick, we get it. move on!" but here's the thing: the way this all played out was integral to what my life is now. certain things would never have fallen into place without the things that fell before them. working at the school at such a vulnerable time reminded me that i WASN'T all of those things i'd thought i'd lost over the last few years- i was more. and the love i had for the kids i worked with reminded me how much better and truly easier it was, just to love people.it was so beautiful, how easily it came to me to love those children like they were my family. life was so much fuller and richer that way.

also, after going through all of the things i'd so easily criticized others for...it wasn't so easy to judge anymore. in fact, i pretty much STOPPED judging, period. i thought about the battles we each fight every day and how every person had them- what did i know, to scoff or judge or criticize? i had a couple of experiences that i felt were somewhat unjust on the part of the other person in the situation, and realized- they don't know everything about me. they don't know what i'm going through. more than likely, they would have felt differently if they did. and so the impulse to judge others so readily was washed out of me pretty quickly.

but that wasn't the end.

unfortunately, things don't disappear. a person who tends to be hard on others, usually takes awhile to truly get rid of whatever it is inside of them that spurs that on. a lot of it disappeared, yes. but much of it has turned inward. i have realized that for the last few years in one way or another, i have tried to absolve every perceived wrongdoing on my part. anything i've done or said that i've felt bad about, i've turned inward and in effect, tried to "pay for". and that's just not how the world works. i'm certain that this thought process has something to do with this illness that i just can't seem to get under control. i'm also certain that it's something i HAVE to let go of, as part of my personal journey.

i can't needlessly criticize and effectively punish myself, any more than i can anyone else. the measure of understanding i try to extend to others is something i should also extend to myself. who am i, to take all of my imperfections on solely on my shoulders?

i am only human.

that thing called waiting....

today i had a conversation that got me started thinking about the concept of waiting. i know you're probably like, "wtf is she on about" but keep reading the wordvomit and it will all make sense. maybe ;)

i work with kids who have autism. my little sister (who is one of my best friends and someone i spent much of my time with) has autism. if you were to ask ANYONE who has a family member or works with autistic kids they would tell you: with autism, there is no waiting. at least, not by choice! autistic kids don't think of the concept the same way we do. they don't understand it the same way we do. going strictly from experience i can tell you, when my little sister "waits" for something or is told she must wait even now at seventeen- she is NOT thrilled to be doing so. she's not seeing the whole situation the way that i am. and that's fine, her brain is wired differently than mine is!

but what about for those of us who DO understand waiting, but just don't want to? maybe you just want everything now because you're used to getting everything so fast. maybe you don't want to wait because you  have the entitled viewpoint of "why should i". regardless of WHY we don't want to wait for things, sometimes it's important that we do! sometimes we won't value something the way we ought to unless we wait for it. sometimes we aren't ready for something and so waiting is the best option.

and sometimes, we just flat-out need to learn discipline and have hard experiences to do so. sucks, right? no. i have been "waiting" to get better from my UC for over a year now. not waiting as in sitting and doing nothing, hoping i get better. waiting as in fighting for SOMETHING to work and waiting to see what finally does. but i have learned SO MUCH this past year and a half "waiting" to get better. in a way i ended up waiting to get a job i really wanted because i honestly wasn't well enough to take it at first, and now that i have it i am so SO happy there and wouldn't trade it for anything. if i hadn't had to wait for this job, would i appreciate it as much? i doubt it.

i just think it's sad...we're so obsessed with fast and quick and instant everything these days...the value of waiting for something is left in the dust. right now i'm reading east of eden and i cannot believe the things people had to endure and have patience with in their everyday LIVES at one point! would some of us these days even survive, heaven forbid not getting everything we wanted RIGHT when we want it?

interesting to ponder. and here's a really great quote from one of my favorite musicians. sometimes musicians are really wacked-out or drugged up but this guy has a point so bear with me and read it ;)

 "In an age that's fast like this, how do you fall in love with somebody? How do you become a master painter? Who sacrifices the time and effort to wait? But I love facing insurmountable odds, because someone's gotta make it. It's like being in the Civil War where they just stand in front of each other. You run at a line of people and they are dropping on your left and right. You can get down on the ground and cry or turn around. Or, you keep going. Someone has to make it. Why shouldn't it be you?"
 -Joshua Homme

he's right :)

hard to please, or....

i started thinking about this....after an interesting conversation a few days back....
how much seriously goes into attraction.

what i mean is, there are people that are found universally attractive...celebrities and public figures, whatever. and that's all good and well. but there's so much more to it when it's REAL LIFE.

for instance, i've come to understand that for me, personally...looks only get someone so far.

i mean, if i find a guy attractive and he ends up being the world's biggest douche, or completely lacking in the depth department, or has a flat/boring personality...it literally KILLS the physical aspect for me. he could be an adonis and if he can't keep me interested with who he IS, his sense of humor, his personality...it literally doesn't matter what he looks like.
 truly, the effect someone's looks will have on me only lasts so long before i'm disenchanted.
chock it up to my ridiculous attention span...i get bored so fast if a guy has NOTHING to back up his looks. my being actually attracted to someone is a build-up of so many different things...and the physical aspect is small in comparison to his wit, his interests, his passions and drive.

it could just be that i'm hard to please.

when i'm up late, i think too much. more than usual even.

first thing's first:
i think entirely TOO MUCH.

second thing: i used to be adamant that if someone was interested in you- and i mean REALLY interested- and you had a blog, they would read it. otherwise, they weren't really interested.

this began back in the days of myspace- i took to my blog there with a fierce devotion. i made it my new journal without really intending to. i had dozens and dozens of private entries, and i had dozens more that were public for anyone to read. to me, if someone REALLY wanted to get a good idea about me from my myspace page, they'd go right to my blogs and read them.

i'm not sure how often it happened.

as a writer, this mattered to me. a lot. and it still does.

i mean, when i am interested in a guy, instead of looking at pictures or stalking his facebook ;) i look first to see if he has a blog. it's not a strike against him if he doesn't- not everyone is a writer and more than that, not everyone expresses themselves through writing even if they don't claim to be a writer. people express themselves, vent, think&process in many different ways.
however- if the guy DOES have a blog, it's a HUGE plus. it points already to having something in common. it means that maybe, just maybe, he's the kind of guy who likes to read the blogs of girls he's interested in. it means that maybe he'll have at least a tiny bit of understanding of why i'm such a freak about Being a Writer.

maybe.

i don't write this blog for anybody other than myself. i don't write it because i need the validation of knowing people read it. but if someone was interested in me, and they DID read it...it would be a sort of connection. even just FRIENDS reading it connects me to them in a way.

see? i think too much. i think about how, not enough guys i know have blogs. about how i have met so few guys who care about writing at all. i've always felt like if a guy is interested in ME, he'd be interested in the writer part of me- because it's a HUGE part! i don't go around throwing what i've written in people's faces, but when someone expresses genuine interest in reading the novel i'm writing, or my poetry or whatever...that endears them to me. it means they're interested in a facet of me beyond my being funny and "hot" and whatever else. even if it's a friendship thing, i feel like to know me you need to know at least a little about me as a writer and why i care about it so much- why it's one of my biggest passions. when i meet people, i'm always interested in what their interests and passions are because I AM a passionate person. if they can't think of any to tell me? what a sad thing. what a letdown.

if you're passionate about something, share it with people. friends, future romantic interests, whatever...let them know that something lights up your days and drives your thoughts and imagination. without passions, life would be gray and completely boring.

i hate weekends.

can i just get that out there?
okay so....maybe not ALL weekends...and not everything ABOUT weekends....
but in general, i'm a person who does best with a routine. during the week it's simple: wake up, go to work, come home, eat, do yoga, work with bekah, chill time, evening walk, reading and bed.
now it's not like i don't ever deviate from this routine- i have writer's group on wednesdays and i have no problem altering it to hang out with people (usually ha ha) it's just in this routine, i feel most productive and therefore most happy. i love waking up early. i LOVE seeing my kids each day. yoga has become MY LIFE. i absolutely don't know how i lived without it. my walks at dusk are something else i love.
and working with bekah? it's amazing. i've learned SO MUCH at CHA that i feel will be so beneficial for her and i am LOVING it! she and i have such a great relationship because we can play and be goofy but she also knows to take me seriously when  i ask her to, so when we work it's all business. (of course that still includes some fun, as it should with DIR) i am just so convinced that my love of working with autistic kids is there so that SHE can benefit from it. i hope to teach her to read well enough that she can read independently when she wants to and really get joy from books. at this point, her attention span is the biggest problem because she knows words and letters and all of that REALLY well. she's so smart it kills me. i mean, i already knew she was but then to work with her on academics and see how well she does is really exciting!
anyway so....this all ties in because with autistic kids, schedule and routine are usually a really big deal. and i'm pretty sure my whole deal with routine ties into that ;) because i just don't function as well without one on my day-to-day. the big exception seems to be travel/adventures.

anywayyyyyyy what else to say? i'm SO glad it's monday and so excited for another week of work and to keep working with bekah! i'm also crazy stoked because i have two really good friends i'm going to be seeing a lot more and it's just great. they're both people i know really well and who i'm comfortable with, so they get more than 2% ;) and that's just awesome.

anywho....life is amazing! my health keeps improving and i'm set to go to cali in august! i can't wait! it'll be my first trip since getting sick, and i'm really stoked. i am so so SO blessed to have the job i do, and the people who are in my life. seriously- what more can you ask for than good people who LOVE you and work that you are passionate about?

oh also- my new obsession is motorcycles. derek got one and we've gone on a couple of rides. OBSESSED. i WANT one.
kbye

i'm the king of the world

that monumental moment when you're on the back of a motorcycle, speeding up a winding hill....raising your arm above your head and shouting "wooohooo!" over and over....


because there was a time when you were so afraid of so many things, you wouldn't even SIT on a motorcycle let alone ride one....

the moment when you go on a walk at dusk, surrounded by dragonflies that are buzzing past your face, their wings reflecting in the last rays of the setting sun....and instead of running back inside, you're admiring how beautiful they are, and how cool it is to see them fly backwards and crisscrossing each other....


that moment when you open your arms and call your two year old nephew over to you, and he literally runs and JUMPS into your arms and gives you a kiss. there was a time when you thought you "hated" kids and that kids hated you...and you love EVERY MINUTE with your niece and nephew, and every minute with the kids you work with at school. and they LOVE YOU. you can see it in their eyes.


i have come a long way.

lately, life is full of these "woohoo!" moments. these moments that i just want to shout "i'm the king of the world!" at the top of my lungs.
and you know what? maybe i have a couple of times. because i am a different woman than i was a mere couple of years ago. i'm not that girl who is crippled by fears and self-doubt, who judges others because I'M miserable. who can't even look at herself in the mirror.

nope. i am rachel effing mardesich. and i am the king of the world.
hehe

the north pole

i find that i am realllllly polarizing.

people either seem to like me a lot.....or really NOT like me.

of bekah, and the best job in the world.

i am SO exceptionally lucky to love my job as much as i do.
there is something about autistic kids, that i just insta-love and connect with.

i'm sure it has a lot to do with bekah, who i love SO much. when i moved back home last year, after derek and i separated, i was determined to become best friends with her. she and i were decently close at that point, but not anywhere near how we are now. a relationship with an autistic sibling is complicated. i still remember perfectly the day i found out she had autism. in my ten year old brain, it made her stranger. i didn't know how to deal with her tantrums, how she climbed EVERYTHING and ran everywhere, how she'd pick up ANYTHING off of the floor and eat it, etc. in my pre-teen to early teen years i bounced between grudging acceptance and resentment. she "cramped our lifestyle" in my fourteen year old head. family vacations that were once easy were now an ordeal. when she did something weird in public, i was embarrassed, etc.

then in my late teens until now...i grew to love and appreciate her more than anything. while other people brought pain and sorrow to me somehow, she NEVER did. she was almost ALWAYS happy and trying to put a smile on your face. she was fun, and hilarious, and when i got married i had her in a bridesmaid dress with my other sister. i thought i loved her then.

and then i got my first job as a paraeducator, got sick and moved home and my appreciation of her grew more and more. i loved the kids i worked with, any way they reminded me of her made me happy. it made me appreciate her more and more. when i was sick, she loved to make me laugh and smile. we'd go on drives when those were the only outings i felt up to. we love all of the same kind of music (except for saturday's warrior :P) and we have the same sense of humor. when we go on drives, i talk to her and i know she cares about me and what i say, even if she doesn't fully understand all of it. my connection with bekah is one of the things i'm most proud of in my life. and it has helped me to find a job i love so SO much. before i worked as a para, i didn't really get along with kids much and i sort of avoided them. but kids with autism and other special needs have always been different somehow, and i connect with them really well. i know it has a lot to do with bekah.

i have been so blessed to have her in my life and family. it hasn't always been easy. there's still times it isn't. there used to be a time when i wanted her to be "normal". now i wouldn't change her for the world. she has been such a huge blessing in my family to lighten the load and to bring joy to us all with her loving, cute and hilarious personality. she is one of my best friends.

i'm so lucky to have her in my life, and EVERY kid i've worked with. they've made me better. 

oh, life!

life is so, so beautiful.

the more i live the gospel, give it my ALL- the happier i am.

i am nowhere NEAR  a perfect person. i have made mistakes and continue to make them. i have hurt people i loved, done things i'm not proud of, etc.

but it just doesn't matter. not with the gospel of Jesus Christ. not with the atonement. my rough edges are smoothed. my weaknesses are slowly being turned to strengths. with suffering, i learn to have joy in the true and pure and simple things.

i am a person who has been blessed with a wonderful life, a great capacity for love and many talents. i am excited for life to continue, to become what i am meant to be. i am ever grateful for my opened perspective as of late. i am ever grateful for the love of a God who has never and will never, give up on me.

life is JOYFUL.

oh yeah, that.

The awesome moment when you find a dress you bought two years ago that still has tags on.....and you try it on (ignore the stupid pose) and realize.....you hate wearing dresses, no matter how it looks.

 

missing

thought of an old friend today, for the first time in an admittedly VERY long time.

even when something is dead, gone and over...i can say there are many moments i can look back at with joy and fondness. it seems like it was lifetimes ago that we were friends....pretty sure i've been living in dog years the last half-decade ;)

lost

i am so, so happy i don't rely on other people to figure out who i am and what i believe.


this is why i AM truly and deeply happy, on every level.

instead of being lost down every road i follow....

oh,

what would you love
adore
and compliment about me?

my face?
my body?
my beauty?

i was born with these things
i did nothing to earn them

what i hope you love, is what comes out of my mouth
rather than the way it looks

the light in my eyes
rather than their color



i could be the worst person in the world
and look the same way

my spirit is what makes me


love THAT.

zomg!

guess who is feeling a LOT better lately?

that's right. me.

time for adventure!! i've got some ideas in this head of mine, i'm pretty stoked ;)

pride and prejudice

i think i may come across as a mr. darcy most of the time. hmm.

solitary.

you know what marriage ultimately has done for me?
it's made me all the more solitary.

i don't need very many people. and that's okay.
i didn't like needing somebody as much as i ended up needing my ex.



and i despise when someone needs me.

love is blindness, i don't want to see...

Fifty Shades of Utter Crap

I came late to the Fifty Shades of Grey party. Well, let me word that differently: I never came to the party. But I was late in hearing about it. By the time I ended up catching word of the fanfiction-turned-bestseller, everyone else already seemed to know about it.

All I needed to hear was that it originated as fanfiction- TWILIGHT fanfiction no less. Clearly, I would NEVER be a reader.

Put aside the fact that this book that's "sweeping the nation" is total smut and is advertised as such. I mean, that's honestly gross enough for me. Written porn? No thank you. So imagine my surprise when I stumbled upon an excerpt from the book (first book, it's a trilogy? please, kill me and send my ashes into outerspace where things make sense) on MSNBC.com

I don't know why I decided to read the excerpt. Because I KNEW it would really tick off the writer in me, and I'm masochistic? Who knows.
The point is, I read the excerpt.
Well, not really. I skimmed it. Because when the first scene in the first chapter opened with the main character (named Anastasia, of all things) sitting and brushing her hair, carrying on the most juvenile and cliche inner-dialogue with herself.....I just knew. No way in HELL was I going to read the whole excerpt. It was painful just to skim it. The writing quality was so incredibly wretched, the writer inside of me wept.
This made TWILIGHT look like brilliant literature! I didn't know such a thing was possible. Riddled with cliches, an elementary-sounding prose and too-many adjectives....apparently E.L. James wasn't just fanficc-ing Twilight, but also trying her best to imitate Stephenie Meyer's writing style.
I finished skimming the excerpt, after reading maybe half of it, and quickly closed the tab in horror. WHAT IS THE WORLD COMING TO?! You know, I guess I shouldn't be surprised that the masses choose to read what is essentially Jersey Shore and Kardashian-quality entertainment packaged into a book....but it sort of breaks my heart nonetheless. All I could think about was some of the wonderful books I've read that will never get a FRACTION of the exposure this horrible piece of crap fanfiction is getting...the classics I've read that are literally an entirely different THING than what this "novel" passes for. Reading and writing have always been such a HUGE part of my life. The books I've read are all part of me in some way. What I write is of course, even more so.

By Fifty Shades of Grey being a bestseller, you're telling me that THIS is the kind of world I am eventually going to be bringing children into, not to mention the kind of world I exist in myself? The kind of world where some horribly-written porno book is "all the rage" in entertainment? Have we really become so simple as a society, that instead of reading something beautifully-written and brilliantly plotted, we're entertained and "stimulated" as it were (ha on the pun...but seriously) by something like Fifty Shades of Grey??

SHAKING. MY. HEAD.

blue.

paradise

everyone has a different idea of paradise. for some, paradise looks like this:

for others, it might look like this:

this, too, may be someone's idea of paradise:

and i could go on and on. we're all so different, that almost anywhere is someone's idea of paradise. i posted the three pictures above because i would love to visit/have visited them before. but none of those three above are MY idea of paradise.

mine? mine is this:

i could post a million pictures of the desert i so love. st. george, arizona, joshua tree national park....DREAM vacations for me. one day, i'm going to stay here:

and i could totally LIVE in a place like this:

and you know what? i probably will! what's there to stop me? absolutely NOTHING. whoever i end up with will love the desert as much as i do ;) because it's kind of a ridiculously big deal to me.
i want THIS to be my backyard, dammit!

the desert is in my blood. it always has been. and i live in one of the BEST states for it.
utah is awesome! after all, it has my paradise!

NERD!

i love being a nerd.
and yes i am an all-out 100% nerd.

not just "sorta nerdy" or nerdy in a "cool" way.
nope.
i'm laugh hysterically at my own jokes, play WoW on one computer while watching anime on the other, star wars-obsessed NERDY.

and i adore it!

it goes like this

i'm happy. why? because i know who i am. because i have amazing people in my life. because i am an amazing person. because i have the whole world ahead of me, and no person to hold me back.

i don't need someone else's validation to make me happy.

you can tell the difference when someone is trying desperately to convince themselves of something by splashing it all over the place, and when someone is reveling in true JOY.

i am doing the latter.

an update, of stoked-ness.

life has been so incredible lately. i don't know where to start!
although i am still physically exhausted and my illness is still quite active, i have been able to make it through work each day. this in itself is a miracle. every morning i wake up thinking i just can't do it again that day, and i do. i love my job so much, but it's physically taxing almost beyond my capability to handle. i KNOW the lord is lending me strength because i am where i'm meant to be.
i'm so grateful.
i also have been so much more positive about my UC. i know it will improve with these infusions. it will just take time and adjustment.

this week i cold-turkeyed off of a pain med i have been prescribed since october. the pain has lessened enough that it doesn't keep me up at night without the med, and i decided that i'd rather deal with what's left of the pain than be on the medication anymore. it affected my moods and personality. for the first time in MONTHS i feel like myself again, and i am so happy! i pray every single day in gratitude that i have been able to cold-turkey off of the meds without horrible withdrawals. i feel like ME again. i am realigned spiritually and it feels amazing.
i am living a Christ-centered life and i could not be more happy!


with that all said, i am SO GLAD it's almost the weekend! i want to sleep, sleep, sleep!


love to any and all!

the yearning for a normal life.

i hate to complain, and i really don't like feeling like someone who whines about the hand i've been dealt...
but sometimes you just have those days, and this is one of them.

i didn't go in to work today because i caught a bug from one of the boys i work with. that's another aspect of my illness, by the way. my weakened immune system is too busy destroying itself to fight off bugs the way it's supposed to, so i get sick a lot easier than most people.
oh, and the chemo makes it even weaker...so between those things....if someone breathes on me and is sick, i'm pretty much guaranteed to get sick, too.

anyway...today i just keep thinking about having a normal life. when will i have one again? or will i at all? i had so much hope a couple of months ago when i began chemo treatment. that hope has gradually transformed into discouragement and even fear as the chemo has not helped in the way i was expecting. i'm afraid i'll have to end up getting surgery. but when i think of living the rest of my life this way, surgery seems reasonable. i don't like having to miss work. i don't like how exhausted i am at the end of every work day.

i don't like how many things i miss out on. this friday there's a big get-together for this group i'm part of on facebook. it's in park city and is the kind of get-together that will take energy i just don't have. not only that, but not knowing where the bathrooms are and being around a bunch of people i don't know just make attending the gathering impossible for me.

but oh, how much i want to go. how much i just want to do "normal" twenty-something activities without worrying about energy levels or bathrooms or pain.

it brings my thoughts back to dating, and how impossible it feels with this illness. who wants to be with someone who can't do normal twenty-something activities? who wants to hear about an illness as gross as mine? who would even want to bother? there are plenty of girls out there who would be so much easier for a guy to be with. not only that, but at the rate i have to "ditch out" of plans i make due to my health, i'm never going to get past a first date anyway.


i just want a normal life today. i want to go camping, and hiking. i want to have late nights watching movies. i want road trips and plane trips and backpacking through europe.

i want to get off of work, and NOT have all of my energy for the day already used up.

and there's my little boohoo for today. now that i've gotten that out, i need to remember all of the reasons i have to be positive and hopeful. i need to do some scripture study and prayer, and remind myself that this too shall pass. or at least get easier to deal with as time goes on.

fingers crossed.