Thursday, November 29, 2012

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

Monday, November 26, 2012

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.

Sunday, November 25, 2012

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. 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

Saturday, November 24, 2012

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!

Wednesday, November 21, 2012

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 :)

Tuesday, November 20, 2012

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'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'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.

Monday, November 19, 2012

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.

Sunday, November 18, 2012

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 ;)

Thursday, November 15, 2012

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:

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!

Tuesday, November 6, 2012

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.