Life Unknown

Deeply Affected

2012-01-09T03:13:00.000-08:00

I work really hard to appear unaffected by the things around me. Cutting remarks from my parents, being forgotten by friends, even world tragedies that don't affect me directly. I don't like letting my emotions show, so I build up a wall of stones. But the truth is, as anyone who's read a word I've written on here can see, I am deeply affected.

I wish losing my friend because he sexually assaulted me hadn't affected me so deeply. I know it wasn't right, but it could have been much worse. For me, though, it was a lot. I'm someone who had only kissed one person and had certainly never done the things that were done to me. I try to pretend it wasn't a big deal; that I'm fine. And, I am fine - unless I think about what happened. Thinking about it never ceases to make me feel ill. I feel like a part of me was taken away. I feel vulnerable and scared and disgusted and other things I can't even voice. For so long after, I was disgusted by anything remotely sexual; half the commercials on tv made me want to vomit. I'm doing better (I made it through a season of American Horror Story, though I did fast forward through all the sex scenes), but I still felt the need to write down how it affected me. It certainly isn't something I've yet been able to say out loud.

There are much bigger problems in the world, I know. And those make me sick, and they make me question God at times. A friend of a friend has leukemia. This girl is 14 and sweet and deserves so much more than what has been thrown at her. She is barely hanging on, has a mother who is absolutely terrible, and I've been spending every night awake thinking and praying for her. I desperately want this young girl to have the chance to grow up, be happy, never have to worry about this disease ever again. And I'm terrified that that won't be what happens. That it will be like what happened to Joshua. I'm not sure if it's worse to lose a 5 year old or a 14 year old to cancer. It really isn't something that can be compared. But it is sickening thinking about a young girl blooming into adulthood, fully aware of what's happening to her losing her chance at life.

I guess that's how I am with most things - fine unless I think about them. Fine unless I think about my future, school, anything related to my health. Fine unless I begin to think about what a truly screwed up word we live in. I can cope fairly well if I keep things on the surface - keep my brain on mindless tv or cute boys or nail polish - I really can. But it all goes downhill if I let myself think.

2011-12-19T18:29:00.001-08:00

I haven't written anything in a while because, well, things have been a blur. A blur of school and being overwhelmed and I don't know what else. After some sort of dramatic breakdown, I wound up in counseling, which has actually been a big help. I should have taken my doctor's advice and got into counseling as soon as I got my dysautonomia diagnosis, but things always get put to the side with my constantly being overwhelmed and all. I am grateful to have a Christian counselor who is keeping me grounded, and I'm even more grateful for the wonderful friends in my life, both "in person" friends and online friends. I can't tell you how much they mean to me. I've had some rough patches,including a sexual assault that made me realize the boy I wrote about in my last post wasn't as bad as I thought, but things are overall going decently. I don't have anything particularly inspiring or un-boring to write about, though - instead I want to share something that truly touched me. I've been reading books from those who are chronically ill (I would highly recommend God Needs Me - Living With Dysautonomia by Lynn Adams!), and a while back I did a Bible study entitled Mosaic Moments: Devotionals for the Chronically Ill by Lisa Copen. Parts were unbearably cheesy, to be honest, but it did have its moments. One particular devotional really stuck with me and I'd like to share it today in hopes that it will inspire those of you who are chronically ill as well.

"I Carry a Burden" by Roxanne Smith

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls." - Matthew 11:28-29

I carry a burden not easily seen and which most people my age don't understand. My burden is stacked several boxes high, and I must carefully balance it, or it will crash down on me, hurting me more severely than usual.

My burden is heavy, and it causes me pain, but the worst part of it is the lack of freedom. I can't use my body for other things, so consumed am I by carrying this burden.

I walk down the path of my life, and I see all around me other people walking their paths, only they walk so freely and confidently while I labor on with my load.

Sometimes I think about my former self, the me before this burden was imposed. I wasn't perfect by any means, but I could escape from my troubles. And now there is no escape, never an escape; not for ten years has there been an escape. My burden is always there, even when I sleep. And I can't take a vacation from it.

In the early days and months, people were concerned, and they offered to help me carry my stack. They walked next to me as I struggled along, lightening my arms just a little.

More recently people don't draw near so much, and I struggle with painful loneliness. I struggle with painful isolation, and I question my worth if people can leave me like this.

It's not that other people don't care about me; they're just too busy with their own cares. If I could go out into their world, their lives, I probably wouldn't feel so alone, but my whole world exists here at home.

I want to take my burden off. I want to stand on a cliff and hurl it out into the sea. I want to have my body back. To dance, to run, to jump, to sit or stand without counting the minutes. I've tried every way you can imagine to throw off this weight of limitations, and I have to face my own powerlessness at failing to do so.

Or, if I can't get rid of my burden, I want, in my blackest heart of hearts, to burden everyone else with the same limitations. I want to see how well others would cope, and I want to make them know how difficult my life is and punish them for being indifferent to me.

Just please don't flaunt your lack of burdens to me. It cuts me so deeply to know you are free. Please don't tell me about your vacations; your sports; your second incomes and wonderful careers; your new homes; your great weekends; your second, third, and fourth children, which I can't have... You see, I'm dying inside when I hear these things.

Please don't look at me in shock when I say I can't sit long enough for a movie or meet you for lunch. Don't look at me like I'm odd when I have to lie down. Don't tell me, "I could never live like you have to," because I can't do this either! Do you think this is all okay with me?

I guess that's why I'm seeking out others who carry great burdens, so we can learn together how to survive. You high achievers can go on ahead. There are things we're learning that you just can't understand. I used to be just like you, full of my own strength and promise and success, but I'm finding there are lessons in brokenness that deepen a person as success cannot.

My life experience used to be about two miles wide and one foot in depth. Now my life experience is about two feet wide and a mile in depth. It contains the same volume, but it's so much deeper. The roots sunk so much more securely in God's promises than in my own promise.

My own promise feels like a joke to me now; it can be ripped away and shredded up and spit out. But God's promises can't be ripped, shredded, or spit. They are for real. "The heavens and earth may pass away, but My Word will never pass away," Luke 21:33.

Still, it's painful to be pruned. It's hard to be melted so the impurities come out. The process threatens to dump me into despair, and I must cling to my faith that God's hand is in this; I'm his pot, his clay, and he's forming me. I didn't want to hurt this much.

I didn't want to be a plain pot, such a humble pot, but one that people admired and that accomplished a lot; the kinds of pot that I defined as "successful." But I can choose to accept that I'm the clay pot He wants; if I don't belong to myself, I belong to Him. And it's his decision how I am shaped and fired and glazed, even though my ideas looked better to me.

And a pot I designed would have fit more comfortably than this rougher, harder, more awkward-fitting pot I have. The pot I wanted was always in use at great parties, with people all around. The pot that I am is often hidden away in a dark closet and briefly exposed to light or to be people, but mostly kept quiet and away from the excitement of life. And for reasons only God knows, that is where I belong.

But such a pot, when chosen, knows it is not for superficial reasons, but for real qualities. Such a pot has a real spirit of humility because its ego is broken. Such a pot can be at peace, knowing it doesn't have to seek after purposes and uses. But its Maker will call it into service when ready. Such a pot learns to submit, to surrender, to rest in its Maker's loving arms.

Lord, I want to be that beautiful pot that you desire me to be, but the process is so painful. Give me the daily affirmation that you are always beside me and that nothing in this world will happen to me that has not been your intention.

To You.

2011-05-31T01:31:00.001-07:00

I hate to do another self pitying emo-kid post, but what else would you expect from me? I have some friends who suffer from POTS as I do who came up with a wonderful idea for a website - letters you can't send. I'd love to link you all to the website, but I can't find it, so hopefully I can edit that in here later. I would ALSO love to be able to write some letters facing the big demons in my life (some which have to do with my last post), but I don't have the words for that at this point in my life. So for today, I'm tackling something smaller. Here we go.

Dear You,

I fell hard for you. In high school, you were the one person who acted like you cared. You did it in a terrible, misinformed way, but I appreciated it still. And I clung to you secretly. Because the idea that someone could actually care, it was just what I needed. The appreciation grew into a crush, almost an infatuation that could never be shared with anyone. Because I knew I was screwed up, I knew I was already guilt ridden for what everything going on with me was doing to my family and I didn't want to bring anyone else into that. I wanted to be able to hold onto that feeling of someone caring so badly, but I didn't want to ruin anyone's life in the process. So I took my thoughts inward, which ended in so much self destructiveness that it became habit.

Cassie from Skins is a character I’ve always seen so much of myself in – she wants love so badly – she just wants to be cared for. She is an anorexic, but her friends and parents are too involved in their own lives to notice or care. And then one day, a boy – Sid – comes along and expresses concern over her eating habits. From that moment on, she’s in love. She hallucinates getting texts from him saying “EAT,” she even nearly kills herself when he rejects her. All of it, I feel, isn’t about her deep liking for him. I believe it was the idea of him caring that brought on her infatuation, that made her attempt suicide out of utter despair of the one person she thought cared shattering her hope.

And you shattered mine. I know it was silly, pinning all my hopes on one person. I knew it at the time, even - but it was all I had. I've grown up. You may not believe it, but I have. I've said it before and I've said it time and time again - I can not and will not EVER count on any person. EVER. They will always let me down. And you have, in every way, shape, and form, proved that to me. I grew out of my infatuation. I am able to realize I never loved you, I just loved the idea of someone caring. But even with high school over with, I still considered you a friend. And I'll be honest, the past made me vulnerable to you still. I shared my secrets with you.

I wish I could make you understand how little time and energy I have and how much of it I spent on you - because I care about YOU. And you say you care too, but I have yet to see you express that past those first few years of high school. I feel like I was just a game to you, your own little episode of House where you got to play Doctor. The second I told you my diagnosis, you stopped acting like I mattered. When in the past several years have you asked how I am? I can answer that - NEVER. When do you initiate the conversation between the two of us? NEVER. When do you show up to things I invite you to? Oh, I can answer that, never. Do you realize that when you missed my birthday party and I had to contact you about it because we were all waiting for you to show up, you couldn't even offer me a Happy Birthday? For someone who claims to care so much and prides themself on doing anything and everything for their friends, you sure have a funny way of showing it.

I really tried. I tried to realize you're going through a lot, and that I can be needy. But you know what? This has been happening for years. I can refer you back to a post on this very blog where I texted you desperately after OD'ing and you gave me some flippant reply via text. That sums up our entire friendship. You called my needs "overwhelming and demanding." I won't argue that. But you just remember EVERY time I have tried to help you, every time I've promised to be there for you if you need something, how I offered my home to you. Because I am a person who actually keeps their promises, unlike you. And I may be overwhelming in terms of what I'm dealing with, but I give more than I take.

I am SO very thankful I have my friend J (who I also talked about in the aforementioned post) to show me what a true friend is. To show me that I mean something. I refuse to put up with your crap anymore. I am sorry that trying to talk to you about this issue made you mad, that it wasn't the "right" time for me to bring it up, but it had to be said. You represent a BIG chunk of my past, and I'm too vulnerable to you to have you treating me like this. I'm a forgiving person. All I wanted from confronting you was an apology, some sort of realization regarding what you've done (or not done) to/for me, but you can't even give me that. I'll always care about you, but I'm not giving you any more of my life. Don't tell me what it means to feel worthless until you've had someone you considered one of your best friends act like your possible death means nothing. Because that is exactly what you did to me. You've made me feel less than worthless - like the biggest burden in the world. Like the world would be much better without me in it. And I refuse to let a person like that waste a second more of my time.

Goodbye.

What other choice do I have?

2011-04-10T00:21:00.001-07:00

It's been a rough couple weeks. A rough couple years. A rough couple almost 5 years, to be exact. Don't expect this post to be too meaningful - I am just sorting my thoughts. I did what needed to be done at the end of December and broke up with my boyfriend after dating him for a year. I spent the last several months of our relationship wanting to do it but not wanting to hurt him, because he is SO nice - and I think, underneath that, there were other reasons I waited as well. Subconsciously, I was scared of being alone again. Not just being single, I don't have a problem with that. The total loneliness that comes with being sick - isolation, feeling like no one cares, spending days on end with no contact from a single human being. It was wonderful, having someone to talk to and see EVERY day. Going back to this has been like having something ripped away from me. Having humanity ripped away from me. And it's extremely difficult. I know I did the right thing, but it isn't easy.

My health has also NOT been good in the least. New, frightening symptoms, and everything else at the highest level of torture. The other day, which was a typical day spent barely being able to walk or sit up, I tried to kill time and get my mind off things by going to a bath product forum I spent a lot of time on when I first got sick. I came across a thread about depression, and because I am interested in the stories of others, began reading through. I was kind of slapped in the face because a lot of the people were talking about their family and some of their stories were SO similar to what I've been through - it brought back a lot of unpleasant feelings and memories that I try very hard to keep buried somewhere deep in my soul. I wish I could say it was therapeutic, but it's just made me more depressed, along with resentful of my parents. I have found a good deal of comfort in music, though - particularly, I found a few songs by the Christian band Plumb that describe me exactly.

Boys Don't Cry describes my relationship with my dad perfectly.
Boys Don't Cry:
http://tinysong.com/iIcb
You sit there on the couch, sipping your scotch and ice. You turn the TV on and tune me out again.

(CHORUS)So what would you say to me, if you could talk to me? You could ask anything, I wouldn't lie. But you're okay with this damaging awkwardness, so I'll just play it safe, and keep it inside. 'Cause boys don't cry.

I used to hold your hand so tight there was no question. But now even when you're near, I've never felt so alone.

REPEAT CHORUS

If you just stand beside me, I'll keep you in my life. Tell me how much you love me, and I'll be just fine. Don't be afraid of me.

REPEAT CHORUS

Jekyll and Hyde is EXACTLY what I would like to say to my mom.
Jekyll and Hyde:
http://tinysong.com/iOxS
You remind me of a cigarette - you burn up slowly and then go out like that. You make it hard for me to breathe, you make my head hurt, you make my skin stink.

So why don't you leave me alone, or say you were wrong?

(CHORUS) 'Cause I don't wanna hide, I need the tears inside to dry. I want more than just to try and love you, Jekyll and Hyde.

Well it's not easy for me to be somebody different, somebody else than me. But you're the actor, the extraordinaire. You make it look like I'm the crazy one here.

So why don't you leave me alone, or say you were wrong?

REPEAT CHORUS

I am willing to forgive - are you willing to take ownership? 'Cause I'm so willing to forgive. We're only given one chance to live.

REPEAT CHORUS

I'm not going to blame anyone for this last song. It just describes me. My faults too.
Cut:
http://tinysong.com/qEm

I'm not a stranger. No, I am yours. With crippled anger, and tears that still drip sore. A fragile frame aged with misery. And when our eyes meet, I know you see.

(CHORUS) I do not want to be afraid. I do not want to die inside just to breathe in. I'm tired of feeling so numb. Relief exists, I find it when I am cut.

I may seem crazy, or painfully shy. And these scars wouldn't be so hidden if you would just look me in the eye. I feel alone here and cold here, oh I don't wanna die. But the only anesthetic that makes me feel anything, kills inside.

REPEAT CHORUS

I am not alone, I am not alone.

I'm not a stranger, no I am yours. With crippled anger, and tears that still drip sore.

REPEAT CHORUS: I do not want to be afraid. I do not want to die inside just to breathe in. I'm tired of feeling so numb. Relief exists, I found it when I was cut.

It pretty much describes how lonely I am, how much I want someone to "?look me in the eye." I would consider the "I am not alone" part to be referring to God.

Today, I was hoping for a better day - my mom's friend came over and brought her two precious little girls. I absolutely adore children, so I was very excited about it. They were amazing as always, but I was SO drained after the few hours I spent with them. It made me think about my dreams - I want to be a doctor, of course, but my biggest dream is to be a mom. How am I supposed to care for children full time when i can barely handle a few hours now and will be out for days?? It's depressing to think about. I just have to TRY and keep hoping things will eventually get better - it's a hard thing to do considering that so far, they have only gotten worse. The quote from Corrie Ten Boom on the top of this page is what I try to remember though - God is there, and has a future for me - it says so in Jeremiah 29:11. It's hard to keep faith, but I admire Corrie Ten Boom so much because she never lost it through all her struggles losing her family in concentration camps during the Holocaust. (If you haven't read The Hiding Place, go do it! Now!) If she can do that, surely I can get through my daily trials and tribulations. I mean, what other choice do I have?

Thank you

2010-09-14T00:44:00.001-07:00

My thoughts are not completely sorted, and I intend to go back to this post and make it less...bad. But for now, I just want to get my thoughts out on "paper."

I feel so blessed, because God has put some truly amazing people in my life. A lot of you I don't kno0w very well and haven't even met, but you've given me random words of encouragement and it's meant SO much to me. A few years ago, after experiencing abandonment by all my friends when I got sick and needed them the most, I was completely lost and lonely and eventually decided people just can't be counted on and will always let you down. I thought I would be okay with just me, God, and my pets, but He showed me through verses that friends are a good thing to have...And all the people who have helped me probably won't even see this, but really, I thank you all because you have shown me I was completely wrong to give up hope on people ever having a heart.

Getting away from that mindset led me to starting a relationship with a great person, who I am lately questioning my feelings for. We've been boyfriend and girlfriend for over 9 months now, but as someone who missed out on the social experiences of being a teenager, I just feel kind of lost. I tend to get attached to everyone and love everyone (I know that conflicts with my previous statement, but I've aloways been a very compassionate person and my whole against humans phase was during a VERY difficult time in my life when I felt like the only way to get by was to become completely callous to everyone because people were hurting me so bad), and over the past month I have realized that I am not sure how to differentiate my normal love for people with romantic love. I just don't know what I'm doing, or how I feel or should feel. It sounds ridiculous, but it's true. So my boyfriend and I have gone on a break, and I just really want to turn to God for answers. I was hoping He'd give me some hints through my ipod tonight, but first it played "All at Once" by the Fray and then "It's All Over" by the Broken Family Band. So I feel like I'm getting mixed messages now! I really feel that's my own fault though. I have to dig a LOT deeper with God than I have been to figure this stuff out. I can't just pull random things I think might be clues from Him out of the sky, which I sometimes do.

And an update from my last post - Midodrine is back on the market! The FDA listened to everyone's complaints and decided not to pull it, and will be giving the drug company time to redo their testing. Now I can just hope and pray that the testing all goes well so it can stay here. But, I learned an important lesson from this - God WILL provide, and He's not kidding when He tells us not to waste our time worrying. I spent so long crying and worrying over the loss of this drug - I lost a LOT of time I could've spent doing schoolwork. And it was all for nothing! I'm an anxious and worrisome person by nature, and this lesson has always been a struggle for me. For instance my cousin is in the E.R. tonight, which is why I'm still up - I'm worried for her. But I'm going to keep praying and turn to my Bible for some positive words about the situation, and hopefully I can calm down. As much as I hate being sick, God has taught me such imnportant lessons through it.

Music

2010-09-03T00:06:00.000-07:00

So, things have not been so nice. But I have been loving a few songs as of late so I'm going to do a little post about why they mean a lot to me. Inspired by the lovely teenpotsies on youtube, I guess. Oh. and before I begin that...midodrine, which has been a miracle drug for me, is going off the market on September 30. I'm pretty much devastated, because I will barely be able to walk, stand, or sit up without it. I'm terrified about that. Search midodrine on facebook to join one of the groups who are against this drug being discontinued and learn about what you can do to help, by the way. But moving on. You will see a basic theme in the 3 songs I'm mentioning.

Aiming for the Sun by Ryan Keen http://www.youtube.com/watch?v=DGDgthQT4pw

This song says, "I feel lost so I'm looking out, searching for a guiding light. I keep aiming for the sun so that my shadows fall behind. Am I just wasting my time?"
I relate to this line because I feel like I keep trying and trying to stay positive right now with my sickness, to keep going. But bad things just keep coming, and I wonder if fighting it and trying to keep going is just a big waste of my time.

Comes and Goes by Greg Laswell http://youtube.com/watch?v=pEFxfVyz4Uc

This song is beautiful, first of all, and also has a lot of things I relate to.
"This one's for the lonely the ones that seek and find. Only to be let down, time after time. This one's for the torn down, the experts at the fall. Come on friends, get up now, you're not alone at all."
Being sick makes you extremely lonely, cause so many let downs in life, really does tear you down. That's all self explanatory. It is nice, though, that this song notes "you're not alone at all" because I really do need to hear that as a reminder - I'm not the only sick person out there! There is such an awesome support group of sick folks out there who are INCREDIBLE individuals.
"It comes and goes in waves. I'm only left to wonder why I try."
This song was wrote about family going through death and illness, and the pain from it all really does come and go in waves - I definitely experience that. There are times when I'm just fine, times when I'm slightly depressed, and times when the pain and uncertainty of my experiences just HIT me out of nowhere and I can barely function. And, lately, I am wondering why I try to keep going, and fight this.

Ain't no Reason by Brett Dennen http://www.youtube.com/watch?v=amwVyRH2B8A

I recommend just watching this video because the whole thing is just stunning, I don't even know if I can pull specific lines from this song. It states; "you can spend your whole life working for something just to have it taken away." A very poignant statement - life as we know it can be gone like THAT. It happened to me, I know. My whole life was taken away in an instant...so I love that this song brings up that point. This whole song just talks about how screwed up the world is and that has REALLY been bothering me lately. The line "slavery's stitched into the fabric of my clothes" is another beautiful and true statement. The problems of the world are so great, it just feels hopeless to me lately. But I love the line, "love will come set me free, I do believe..." I agree with this, only I'd put in God's love. It's tough to remember it, but I really do believe God will set us all free from the pain of this world.

Life...

2010-08-07T01:15:00.000-07:00

So, my last post was not pleasant at all...I was an emotional wreck, obviously, and unfortunately I made some bad decisions in that state (none of which included killing anyone, har har). The numb feeling went away by the end of the night and I was left just really upset, which is better than numb sometimes. It has just been a really crazy few weeks, between dealing with my health and worrying about several friends and family member's health, especially my mom - I'm not sure I've mentioned it here, but she suffers from Lupus and it has lately started to affect her heart. She works her self so hard and I am very afriad of her dying. However, I don't want to talk about all that. My posts on here tend to be very depressing because this is where I vent, but I feel like lightening things up a bit tonight.

I don't know how to explain how I am. You could say ditzy, but maybe it's just the brainfog, I don't know. Either way, I manage to do a lot of dumb things. Today I managed to break the zipper on a zip-loc bag. Only I could do that... Othr than that, nothing very exciting has happened to me, since I spend most of my time at home. I ran out of my centrum vitamins and went foraging down in the basement to look for some more, and ended up finding some vitamins for ages 50 and up...I figure since my body works like about an 80 year old's, they'll be a good match, right? Ha. I also found some hair, nail, and skin vitamins, which I may try taking. They have Kourtney Kardashian's signature on the back, so they must be legit. :p Seriously though, I really hate messing around with new pills. I'm on so many things that I feel like even adding a vitamin might cause some sort of bad reaction somehow. Sigh... I want to grow my hair out, though. I want to donate it, not to locks of love because I've heard they're kind of sketchy, but to some organization like that. I know I complain all the time about various details of being sick and such on here, but it has also helped me see how fortunate I am in other areas of my life (even if it doesn't always sound like I feel that way). I'm very lucky I have a head of hair and eyebrows and eyelashes...I'm lucky I don't have an autoimmune condition like alopecia, and I'm lucky I don't have to continuously take a medication that makes me sick without any hope of being able to get off it, like with chemo. Dealing with medicines is SO scary and frustrating, but I'm so fortunate that if a medication is not working for me, I can go to the doctor and find a solution, you know? Not everyone has that luxury. Not everyone even has the luxury of getting any medicine or medical treatment at all! It's funny how some of the things that have caused the most heartache in my life, like medications and doctors, are actually some of the things I should be most thankful for. Funny how life is, huh?

Avoidance

2010-07-27T16:30:00.001-07:00

Yes, I've been avoiding writing on here. Not because I hate writing or anything like that, but because I just want to escape being sick. I've been avoiding watching youtube videos from my fellow sick folk, going on the sick person forum, keeping track of my health...anything to do with being sick. I just don't want to deal with it. Of course reality had to come and bash me in the head at some time, and that time was today. I'm really depressed. I just don't know how to handle all this anymore. School is coming up, and I don't want to deal with it again. It's so difficult to keep pushing and fighting all the time when I just want a break. The thing is, you can't have a break from your body. You can't escape yourself. And, right now, that is all I want to do.

I feel like a zombie today. Sometimes I just walk around emotionless, feeling like I could kill someone and not even react. I don't know, I just feel so..jaded, or something. As though I've been through too much to care or feel anymore. I'd love to cry but that hasn't happened. I've spent the day sitting there, staring into space. I've been trying to hard to make strides forward in my relationship with Christ, in changing myself so I don't feel like a blob of nothingness all the time but I can't seem to get past this. I just want a way out. I want my soul out of my body, I want to be free. If anyone knows of a good soul removal surgery, let me know. Until then I guess I'll just continue to be a shell of a person, barely hanging on.

2010-04-21T00:36:00.001-07:00

I don't know that my attempts at facing reality are any better than yours...

Grief

2010-02-17T00:06:00.000-08:00

I recently saw another girl with dysautonomia vlog about getting diagnosed. She mentioned going through the "7 stages of grief." The more I thought about it, the more I agreed with her. Only, I feel like I have gone past acceptance over and over...yet somehow I keep backtracking. I always end up back in denial stage and quickly ease into the depression stage for a long stay. It happened again today. Now, let's have a look at my life at the moment. I'm getting back in touch with God, I am doing okay with my parents and am not going through the pain we've dealt with in recent years, school is difficult but going okay, and - here's a big one - I now have a person in my life who actually cares. And he's unbelievably wonderful. Haven't I been crying about feeling lonely for months and months on this blog? Haven't I sat there in tears going through my Bible, finally realizing the fact that God DOES want us to have friends to support us here, and spent hours praying for one? And yet I am still back in this stage of depression. It was such a little thing that set it off, too - I started thinking about all the people I saw at the doctor's office today, all the people who are dying. Which made me think about me and my own sickness, which reminded me of the fact that I may develop one of the feared disorders I pitied the other people for and die myself. Which got me back in denial. Back in anger. And, what pops into my head? Self destruction. It's ridiculous. It discusts me. I have so much going for me. Today I was in a makeup class and I was able to put makeup swatches on my bare arm and put it out in the light, for other people to see. It's been so long since I could do such a thing without a care in the world. I felt proud. Do I really want to give up all the healing, all the progress, for one little moment of gratification and weeks of secret anguish? How can this thought even pop into my head? How can these other thoughts even pop into my head? How can I decide, while in the car on a beautiful day near Christmas, that I want to torture myself when I get home? My mom is next to me, we are listening to Christmas music and gazing out the frosty windows at beautiful displays of lights. We are joking and laughing. And THIS is what goes through my head? I hate it when these moments sneak up on me. I can do okay. I can be happy even. I just have to absolutely, positively, not let a few thoughts cross my mind. If I begin to think about my future, I'm ruined. I really don't know what it is about secret abuse that makes me feel better. I'm in a helpless situation. I need to feel like I'm doing something, helping in some way. So I do this? I refuse to go there ever again. I want to rely on God. I don't want to hurt my body anymore, even though I hate it. It just takes so much strength. So I pray that God will give me it.

An Opportunity

2010-01-21T14:52:00.000-08:00

I never realized this, but being sick, being unable to do many things actually provides me with a wonderful opportunity to be still and just spend time with God. Even sick, I am still often acting like Martha - always doing things, always "busy" never just sitting with the Lord. I want to be a Mary. I want to have all my focus on God, I want to be able to be patient, spend all my time with Him, and just listen. I have always been the type who just goes, goes, goes, and maybe God can use me better sick. I'm forced to be still, and unfortunately even in this position I still find ways to be busy with other things - being on the computer, watching television, etc. I know I am going to be in school starting tomorrow, but I want God to remain the main focus of my life. I do not want anything to get in the way of my relationship with God, which means I am going to have to take action. I am pledging to spend much less time on the computer and television, and instead spend my free time with God. Lord, I want to know YOU. I want our relationship to grow so much deeper, and I want to know Your will for my life. God, please use me, and please help me to always put You first. Amen.

Black Hole

2009-12-02T07:37:00.001-08:00

I've got to crawl out of this black hole.
The problem with black holes, you see,
is that it is so easy getting caught in one
yet so very hard to get out.

This was just a thought; hopefully I can turn it into some sort of a poem.

I don't know what to write lately. This week has just been terrible. I had an awesome weekend; went out and saw a friend and ate sushi, went shopping, AND saw a movie - but of course I had to come home and face the reality that is my life. Meaning, using that much energy has left me pretty incapacitated this week, as I knew it would. And it makes me sad, and it's scary. And I just want someone to understand. And, well, people aren't helping. They are just making me more frustrated, and now I want to do something self destructive just to smite them I guess.

Well this seems accurate.

Idealist Counselor (INFJ)

You are introspective, cooperative, directive, and attentive. You find helping others to personally develop and reach their potential to be personally gratifying as you have a strong desire to contribute to the welfare of others. You often communicate to others in a personalized manner and are positive and kind when dealing with others. You are a good listener and are highly intuitive. You are often able to detect the emotions or intentions of another individual before the individual is aware of them.You have an intricate personality and rich inner life. You tend to keep your innermost thoughts and emotional reactions to yourself, which can make you tough to get to know. You tend to be private, possibly because your ability to take in the emotional experiences of others can cause you to be easily hurt. You have great depth of personality and can understand complex issues and individuals.You often prefer to work on a one-to-one basis with others or to work intensely with people close to you. You are happy doing jobs that require solitude and close attention. You are also happy working with others provided that the personal interactions are not superficial and you are given some quiet time in order to reenergize yourself. You usually exert your influence behind-the-scenes rather than being a visible leader.You often work well in organizations. You value staff harmony, are good at consulting and cooperating with others, and you are concerned with the feelings of others. You strive to make an organization run smoothly and pleasantly. You can also act as a barometer of the feelings within an organization.Famous Counselors include Gandhi, Sir Alec Guiness, Carl Jung, Eleanor Roosevelt, and Sidney Poitier.

I have made no progress on that poem.

Mistakes

2009-11-16T19:55:00.000-08:00

I'm not even sure what to write here...basically I got upset again. And I took a lot of pills. Then I texted A. because I got scared, and he pretty much said nothing, then I sat there and spaced out for a while, wanting to die except that in the back of my mind I knew what I was doing was wrong. So I went and made myself throw up a lot. I'm not sure if it worked, because I took the pills on an empty stomach, but I sort of hope it did, because I don't want to do what suicide would be doing to anyone. It was a bad mistake, and now that I'm writing this I'm getting a little panicky, hoping that worked. I don't even completely know what my deal was today. I always try to avoid thinking about the future because it gets me very upset very quickly. But then I started thinking about my mom, and school, and how it often seems like no one cares, and how I will never be good enough and I want to starve starve away till no one can see my anymore. Then I tried to write to my supposed best friend and she was ignoring me and it confirmed my feelings of no one caring about me. But after that I remembered J and how sweet she is and what a good friend she is and how she is really the only friend I have in real life who somewhat understands me and I knew I shouldn't be doing this...so I just talked to her because she's great and she was nice and stuff. And she told me I should journal about the good and bad in my life, which is why I'm writing here. But this whole post is just a big jumbled mess, nothing like what I usually write and nothing that makes me feel better. I will try to do what she said anyway...

THE BAD

I have spent my life being verbally and physically abused by someone who I really love, and I won't even go into it because that's a whole other story but it just puts me in the strangest place...because it's someone I love.
I'm chronically sick
I'm always in pain - my stomach, my body aching all over, feeling like I'm being stabbed in random spots, feeling like there is poison running through my veins...
I'm always dizzy
I can't walk or even sit up a lot of days because of my illness
All my friends abandoned me when I got sick
I feel like I cannot think fully anymore
No one understands at all what it is like to be sick all the time
The few people I still talk to hang out with each other all the time and not me because of course people don't understand that I am often to sick/exhausted to do things and I have to pace myself..
I often doubt if this will kill me
I don't know if I will ever be able to have kids
I worry I'll be sick forever and never be able to pursue the few dreams I still have
I know I'm always going to have issues with thinking I'm fat
I hate how I look, I hate my face, I hate everything
I don't want my mom to have to deal with me being sick, it's too much for her
I can't handle that there is a pandemic happening right now, because that's my worst fear.

More. But I don't like writing this. I'll just say that most of my problems stem from extreme anxiety, self hate, having a chronic illness, and childhood abuse. Let's leave it at that, alright?

THE GOOD

I have a lovely room all to myself
I can read and write
I have some of the sweetest pets in the universe
my mom and I have a lot of fun together
my dad is sweet and nice, even if he doesn't talk to me, and he doesn't do a lot of gross things that some men do
My family is stable financially
I am able to get out and go to the drugstore on the days I can walk, which is at least a way to get out of the house, and I'm fortunate
I have a car, for when I can drive it
I have an elliptical exercise machine in the basement, which is pretty much my baby :p
I am extremely thankful to have met the sweet people over the internet that I have met, along with J.
My mom does care about me and so does J.
I have a bed and it's even a comfortable bed, with blankets
I have access to medicine and doctors - as much as I sometimes hate them, I know I'm extremely fortunate
I have parents who care and pay attention
I have roof over my head - a heated roof, at that
I have access to clean water and a supply of food
My extended family gets along well for the most part, and they are a fun and sweet group of people who know God
As much as I hate my body, it can do some things right. I can swallow, breathe on my own, walk most of the time, put on my own clothes, and even exercise sometimes.
I can (mostly) afford to attend college and get the books and supplies I need
God is there.

Mostly material stuff, which I can assure you does not make a person feel any better. But I do have my mom and some really sweet people who probably do care, I just don't realize it, and those things are what is important. And let's be honest here. So often I write about how my eyes have been opened to how fortunate people are to have their health, and how I never want to take advantage of anything like that again. And here I am, more blessed than I am capable of realizing, and I was so close to giving up my life completely.

God Help Me

2009-10-03T00:35:00.000-07:00

I'm enjoying college. I really am. It's a nice schedule, and much different than the stress of high school. Unfortunately, though, having a bit of free time allows me to look at other aspects of my life, and realize how very lonely I am. I am getting kind of depressed about it. I feel like the few friends I had in high school were somewhat fake and disposable, and I was just kind of a friend on the side for them - they had the people they really hung out with, and they had me, who they saw at school occasionally and said hi to. I know I'm easy to forget because I missed so much school due to being sick and I couldn't participate in all the "fun" high school activites, but that doesn't make what I experienced acceptable. It doesn't make it okay for my "friends" to leave me, ignore me, and go find new friends to do fun things with. I guess I just feel like everyone I have known has let me down. I'm not one of the people that my classmates try to visit over the weekends or on breaks. I'm not someone they message one facebook with, "hey, I miss you!" or send fun little video diaries to. Hell, they won't even text me back. Pretty much all the students from my high school drama program have been invited to the high school's musical for this year, and they all have plans to go with their little friends. Not me. It hasn't even been mentioned to me. I am tempted to get rid of my facebook because going on there and seeing all the cameraderie between my former classmates and friends on that freaking mini-feed makes me want to throw up. And strangle someone. I'm tempted to get rid of the damn thing, but the problem there is that I am so unbelievably lonely. I have no one to talk to, no friends, no new life. I go to one class for fifty minutes, three times a week, and the rest are online. Not the best way to find opportunities to socialize. I haven't even heard from my supposed friends who are attending the same college as me. So I keep going on facebook, soaking up any chance I can get to talk to someone (and they are few and far between). Can't say anyone is particularly enthusiastic about talking with me.

I know people don't try to purposely be hurtful, but being in the situation I am in it's all so unbelievably hard to deal with. I know no one thinks about what it's like for me, but I wish someone cared. I say that all the time on here, but I do. I hate that I'm sick, I hate that I'm constantly in pain and struggling to walk and stand, I hate always being so exhausted, and I really really hate the impact it all has had on my life. I still wish I could dance and do a million other things, and more importantly, I wish I actually had a life. And I wish there was a way I could know if I will ever be able to have one. I have a biochemistry major, but will I actually ever be able to make something of it? I know that if I continue to be the way I currently am, I won't be capable of working long days as a doctor. I won't even be capable of going to medical school, unless it's two classes a semester and I'm in there till I'm forty.

It makes me sick to think about this stuff. Unfortunately, having a little time to myself where I'm not asleep or frantically trying to keep up with schoolwork has allowed me to think a bit more. And that has made me depressed. Oh yeah; and mad, mad at every person who ever was my friend in high school who let me down. Which is everyone. But I've known that for some time now. I've known people would let me down. I wish I had someone who wouldn't, I wish I had someone I could trust. And, I guess, I do. I have God. I so long for love and support from people on this earth, I want it so bad. But I do have God.

Contemplating

2009-09-02T23:21:00.001-07:00

I just went back and read the very first post I wrote on this blog, and I still find it very inspiring. There are so many times I have tried and failed in the past couple years; so many tears shed, so many bad decisions made on my part. But I know I need to keep going.

Today has been a bit of a whirlwind. I am in my third week of school at the local community college, and I'm already extremely overwhelmed. I missed my first day of class today. I'm already behind. I spent yesterday hardly able to walk and unable to sit up for more than a few minutes, and the frustration came back. I was already behind in class; I couldn't afford to spend the day just laying in bed! I had work to do! But it was beyond my control. I read from my speech textbook while laying in bed so I could at least accomplish something, but today I found that the quizzes over the sections I had read from were locked and I would be recieving a failing grade. Great way to begin the school year, no?

I am also really struggling in calculus. I'm doubting myself, and I am doubting my ability to keep up with these classes. I only have one class that I need to actually go to a classroom for, but I have an additional 3 classes which are online and have deadlines for assignments just like any other class would. Calculus is the most difficult because I took precalculus my junior year of high school, when I was very ill (and mostly unmedicated!) I missed a great deal of school, and even when I was there for class I was extremely out of it. Needless to say, the information didn't really stick. So, calculus is not going too smoothly. My teacher's style completely clashes with my own (I respond well to writing, but she cannot write a good English sentence for her life), which is no help.

I don't want to have another year like my previous ones. I don't want to be miserable; always in pain, exhausted, and just barely getting by. I don't want to spend my nights crying and revert back to my old self, who took comfort in knowing that if things got too bad suicide could be the answer. I want to actually learn this year, and I want to be on top of things. I want to be able to enjoy my life for once, and get close to God again, and do my exercises - the one thing that may actually help me. That's what I want. but what I do not want is to spend about forty years in college. I'm already only taking 12 hours, less than what is needed to get through school. Not to mention the fact that I am planning on attending medical school after four years of college...ugh. I honestly wonder if I can do it. And I wonder if this is even what God wants me to do.

Changes

2009-08-04T00:13:00.000-07:00

It's really late. I really should go to sleep. I just want to sort a couple thoughts, and write out what has been happening, even though I'm the only one who reads this and I already know what's happening...

So, I made it through high school. It was extremely difficult, and I had some really terrible moments, but I did it and I am extremely proud. I didn't cry at graduation or look back at all the old memories and moments with my friends, but I was proud of myself. I don't think the fact that high school is over has completely sunk in, however. My friends are leaving for schools across the country, and it's sad on some level, but at the same time I feel like I'll just be able to see them tomorrow, like nothing has changed. In a way, I feel a bit left behind because I am attending community college due to my health. It's slightly dissapointing, but I know it's the best decision. I think once school starts I will get back into the swing of things - at least, I hope so. There are several students from my high school who will be attending the community college,(my best friend happens to be in my psych class!), so I don't think I'll be too lonely, despite the fact that I am only attending that one class at the actual college and the rest of my classes will be online. I'm sort of just pretending this isn't happening because school has been such a nightmare due to my health...but maybe this year will be better.

A lot of it is in my hands. I need to start going to bed early (uh oh), stop procrastinating (again, uh oh!), and get my priorities in order. And I'm running out of time!!

I know I need to do that, yet at the same time I am just now allowing myself to get into the things that I have spent so many years missing out on. It's summer, I can use my limited energy any way I wish because I am not doing school work (well, except I have to learn how to drive, which hasn't exactly happened...), and I have reignited a few old passions. Namely, makeup, which has been my latest obsession. It sounds silly, but I really haven't had a chance to be a normal teenage girl in so long and it's just a fun thing to do.

I think the key for this year will be balance. Also, getting back to God. I just got back from a trip to Colorado (I'm so blessed that I'm doing well enough to handle a trip like that!), and I pretty much realized that I will not be happy without Him. No matter what. I've gone on vacation, seen friends, bought a ton of makeup and stuff...but I haven't been particularly happy. So I have to get back to God.

Well, my thoughts are sorted, and it's time to try to find that balance again...so, I'm off to bed.

Good Things

2009-04-28T11:51:00.001-07:00

"you know the sunshine and the glowing moon
you know the shining stars at night
and the clouds that drift up and over the land
you know the soft patter of the rain as it sprinkles down
you know the amazing wonders of a thunderstorm
you know of rainbows after a rain shower
you know a field full of flowers blooming in the spring
you know a lot of sweet things sweetie"

I just wanted to get that written out somewhere, because a sweet friend wrote it to me and I thought it was nice...I need to focus on nice things right now.

And...from the song "Hero" by Superchick that describes me to a T...

No one talks to her, she feels so alone
She's in too much pain to survive on her own
The hurt she can't handle overflows to a knife
She writes on her arm, wants to give up her life
Each day she goes on is a day that she's brave,
Fighting the lie that giving up is the way,
Each moment of courage her own life she saves
When she throws the pills out a hero is made

Just Trying to Get By

2009-04-22T15:58:00.001-07:00

I still feel so alone. I am trying to turn to God, but God is not a human who can literally sit there next to me and listen, or hug. But it is still something I need to work on. And I trust God to provide for me what I need...I just don't know why it hasnt happened yet. I don't know why I spent a year being constantly cut down, feeling horrible, wanting to die and doing the worst things to myself and had no one there to help me. Every time I tried to talk to God, I begged for Him to help me, to give me the strength and courage to stop myself, to find comfort through Him and in His words. But it never fully came. Was I not trying hard enough? I want God close to me, and I feel that should be my main priority. Does God want people away from me so I focus fully on Him? I don't know. But I know the Bible talks about the importance of friendship and having people here on earth to provide support. And that is what I want and need. My doctor recommended seeing a counselor because he said being sick might make me upset, which is absolutely true, but I didn't want one. My mom finally made me start seeing one after the last time I almost killed myself. I hold back because I don't want to get upset in front of her; and, well, talking to someone who is paid to listen isn't the same as having a friend who actually cares.

The First Thing You Want Never Comes

2009-02-18T22:19:00.000-08:00

Know what makes me sad? No one is listening to me. When I want help, no one is there. I spent a year feeling so, so horrible, I mean I was a complete wreck. And it had to be obvious to the people around me...but no one helped me. I felt completely alone and abandoned.

And, the one thing I don't want help with, the one thing that really doesn't matter at all, people constantly dwell on and try to "help" me with. It's just sad and pathetic...sad that they're being so dense that they are missing the big picture, sad for me because no one will listen to me. No one seems to care about what really matters. And I wish they did.

It would be nice to have a friend, any friend, who would listen to me and who would've been there for me at any time now or over the past year. I don't want to be a charity case though. And I don't like begging for attention...

But I get none at all. It's like I'm forgotten. I wish, I really just wish, that I had someone who cared...who was genuinely concerned when I missed school or actually wanted to know how any of this affects me. It's all so hard, especially since I have to face it completely alone.

Another Bad, Bad Day

2009-01-16T13:29:00.000-08:00

This shit is ruining my life.

I so desperately want to be healthy, to have the opportunity to live up to my intellectual capabilities and be all that I can be...but I feel so trapped. This illness has me completely stuck, and there's absolutely no way out.

Worse, I feel like no one understands me at all. It makes me SO MAD; it's the most frustrating thing. To be judged and looked down upon on top of all the other crap I deal with...I'm sure people think I'm lazy and who knows what else because I take a shortened schedule; I don't completely know what the hell people think and I probably don't want to know. I am so angry right now and I don't know where to put it.

MMMhmmm. I know it's a lot my fault, because I don't tell people what's going on with me. I don't like talking about it, it makes me sad. And I'm embarrassed, for whatever reason. I just hate all of this. All. And I thought writing here might provide a little relief, but it's giving me nothing. I just wanna start cutting again. That was something. I don't know what it was even, a way to hurt myself but of course then no one even cares about that either do they? So what does make people care?

Butterflies and Bedsores

2008-11-28T19:25:00.000-08:00

Butterfly

Stuck in a glass jar,

Looking towards flames,

I'd be so happy

If I could get away.

The translucent walls are closing,

I'm gasping for air

And all I can see

Is you out there

Smiling, mocking

You like what you see

But the glow of the fire

Is calling out to me.

You don't want me hurt

But you cannot comprehend

How the pressure of this glass

Is causing me to bend.

So just let me out,

Let me go towards the heat

I may get burned,

But it will give me relief.

I want to be free,

I can't do this anymore.

Stop crushing my wings,

And just let me soar.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Bedsores

You lay in bed and pretend it's your coffin

Waste away until there is nothin'

You wanted more than this,

You wanted more.

You searched for love and just found dissapointment

All of your friendships became disjointed

And nothing's left now,

nothing's left.

You hope for comfort and get reprimanding

You'll never find any understanding

You have no faith left,

You have no faith.

Where you seek solace you find empty rooms

You're left to cover and clean your own wounds

There is no help here,

There is no help.

What you thought was water turned to blood

You spit it out into the mud

There's no relief here,

there's no relief.

Crushed down, you can't even crawl

How much further is there to fall?

You're giving up now,

You're giving up.

Why move when each motion causes pain?

Why ask for help when there's nothing to gain?

You wanted more than this,

you wanted more.

So I'll just stay here,

I'll just be here,

in my coffin.

Outlets

2008-11-05T20:39:00.000-08:00

Ok, ok. So I just wrote the most depressing post ever. But writing is what clears my head, and that got some negativity out. Which is why I want to focus on what I can do now to keep that negativity away; activities I am actually capable of doing in my current condition. I am sick of seeing my life waste away, especially since I know how valuable life is and I have no idea what will happen with mine. I just quit voice lessons; those were a lost cause to begin with because I really can't sing anymore due to being sick, and I'm actually not supposed to because it aggravates certain lung issues caused by my illness. I'm also not auditioning for my school's musical this year. It's the right decision, I know, but it's honestly very hard for me. I wrote earlier about how I know these changes have occurred and I have to accept them, but it really still is hard.

So...new outlets. I want to gain more skill at the piano, because I need music in my life and playing actually really really soothes me and makes me feel better. The only problem is, I am very weak and it extends throughout my hands so that I can't play long, but I can still handle playing for short periods, so I think this will work.

Exercize. Not artistic but still an outlet. I REALLY miss the physicality of dancing. I love throwing myself into something and pushing my body, feeling the physical exertion of it. Dance is so vulnerable and you really get to put your emotions into it...and it creates something beautiful. Exercize doesn't create beauty, but it covers the physical exertion part, at least. And I've enjoyed seeing my stamina increase and watching my body get more muscular. Hell, I need the endorphins.

I want to try painting. I did it when I was little, like in art class, and I loved it. I still love the idea of painting, and looking at paintings. I have no idea what I'll create (it'll probably be crap), but I've always wanted to do it. Why not.

Writing helps me. Nothing much comes out of it except that my thoughts get sorted, but I definitely want to keep doing it. I've wanted to be an author since about 3rd grade, but I gave up on it a while ago because I don't keep focus well enough to write an actual novel. I've actually came back to the idea recently, though, because it would be a good job for me to have as a sick person...I'm still hanging on to being a doctor...I want to help people. But I don't know what God has planned.

Praying. Getting on track with God. Yeah.

Dark Clouds of Gloom

2008-11-05T20:04:00.000-08:00

Oh, me. Managing to cause death and destruction wherever I go. It's amazing, actually. Amazing in a really bad way. Sometimes I just can't stand to be around people. I don't think there's a single person I was around today who didn't piss me off in some way. People are so loud, and they talk about really stupid things. Oh yeah, and they're happy. Happy people are annoying.

I wish I wasn't so damn bitter, and I didn't have so much distrust for people. I guess I never really got over being abandoned by everyone when I first got sick. I spend a week in the hospital, which is located less than 15 minutes away from all my "loved ones," and I am visited by not a single one. Pathetic I guess. Kind of like that first summer when I spent 3 months in bed thinking I was going to die and didn't hear from any one...not even the person I was closest to, the person who had been my best friend. I wish I wasn't still bitter about this stuff. And I wish I was better about showing my feelings. I never ever want to cry in front of anyone, or really say anything other than "I'm fine." I hate being mocked for crying. I remember when I was probably ten, I was so so upset and I'd just gotten hit. I was crying hysterically and my mom decided to record me crying, saying it was so I could see how stupid I looked. I still feel stupid for crying.

And, of course, if someone were to ask how I'm feeling, you'd be hard pressed to find a time where I answered with anything other than, "I'm fine." It's automatic. The truth is too hard for me to speak, and I don't want to make anyone else upset. I upset people enough as is. I am constantly blowing people off because I'm too sick to do an activity, constantly letting people down. I have nothing good to share with anyone.

I can't even begin to explain the guilt I feel for the stress this illness puts on my family. My bad moods don't help, either, because I'm so cranky and we end up in fights. I got kicked out last week for the millionth time and heard my mom say, once again, how she can't stand living with me. I need a way to be less cooped up in my house, but that's hard, because I really can't handle any more activities than I'm currently doing (and I'm currently doing just about nothing. Aside from my four classes at school and exercizing). I really miss dance; it was such a huge huge outlet for me. There are so many things I was passionate about that were ripped away when I became ill, and it still makes me sad. I want to move on, though, I just need to find some sort of outlet. In the last year; I had some sucky sucky outlets. Just things I did in an attempt to ease stress, that I also used as a way to punish myself because of the guilt I was feeling. I still feel that guilt, because of the way I've managed to tear my family's life to shreds. I feel like life would be so much easier and happier for everyone without me.

On the bright side, it's raining. I like the rain.

Redemption

2008-09-09T15:17:00.000-07:00

I'm really starting to think I can handle this. Not alone, but through God. There are times when I really doubt myself, when I really wonder if I can even make it another day. But right now...I feel like it's possible. All things are possible through God.

I had a few triumphs last week. It was in the midst of a time when I was really, really ill, and having good things happen in spite of feeling terrible was a big encouragement to me. I wrote and performed a monologue in my drama class, and got a great reaction from it. It felt so surprising and so rewarding...I didn't know if I could act anymore, or have the energy. Now that I saw I was able to push myself and get through that even though I was super sick, I have a little more confidence. I want to continue to push myself, to not let this disease get the better of me. I liked being on stage. Hearing an audience reaction and the sound of my voice reverberating through the room reminded me of how I used to be. I feel like I may not have the energy I used to, and I might have a different outlook on life, but I'm still the same person. Maybe just a little more wise, and stronger. I might not be able to do everything I was used to, but maybe this, a little bit of theater, is something I can still incorporate into my life. I like that.

I found out that my PSAT scores have led me to what could be a great award leading to really wonderful scholarships. What an answer to prayer...I am constantly worrying about how I will make it to college, and now I know it will happen. I'm trying to trust God, and He's doing great things.

I'm doing well in my classes at school, despite missing at least one day a week (my goal this week is to miss no school at all!). I hope I can begin attending my four classes on a regular basis. This is improvement, and I'm proud of myself. More than that, I am thankful to God, who knows exactly what I need, even when I don't. I am a worrier. I am trying to put my complete trust in God. I don't need to worry, because He's there leading me exactly where I need to go. This is a struggle, but I have seen what God is capable of in my life, even when I just trust Him a little. I want Him to have every part of me. I know amazing things can happen through Him.

Perseverance?

2008-09-02T19:32:00.000-07:00

I'm writing because I need to. Sometimes I write and write, usually out of depression, and end up inspiring myself. I hope that's what happens here.

When I was little, I wanted to be an author. I wanted to be an actress. I wanted many things. And, yes, there is a lesson which is typically learned early on - you can't always get what you want. I knew it, but that didn't stop me from having big dreams and pursuing them. I believed in myself. I know what I wanted, and I figured if I worked hard enough I could get it.

Where is that person now?

I look at my life, and I look at myself. Who I was, who i am. I'm stubborn. I always have been. But I learned that there are things you have to give up. I learned to accept it. And yes, I gave up my dreams, but I got new ones. I look towards my future. which always seemed so bright. The possibilities for my life seemed endless. But now, when I look forward, I am scared. I have limitations. I wonder how much I can handle.

Yes, I have a dream. There are a few things I would like for my life, but I'm keeping things flexible because I have learned that there is no way of knowing what will happen. Still, that shouldn't stop me from pursuing these dreams, right? I can't just sit back. I can't stay here, cowering in fear from life, wanting to give up.

Yet, my fears are so great. Being sick has changed me. I can't do what I once could. But I am glad I have taken the leap from pursuing a dance career into a possible medical career. I really think this is what I want, and I wouldn't have known it if it wasn't for this experience. My fear comes in here, my worry. I have this goal, I want this thing that is so big. And yet I have learned to be realistic. I have learned there are things I can't do. Will I be able to make it through college? I currently can't do a full schedule in high school, how can I expect college to be any different? High school wants us to have the rest of our lives planned out. College, at least. Which is expected - I have less than a year left of school. Colleges are asking for applications already. And there is one school that has always caught my eye - originally, for their arts, and now for their six year medical school program. I want this. But I look at the requirements and I want to cry. I see what I've missed out on. I know my GPA and my credits would have been higher had I not been sick, had I been able to take more classes. My life would have looked better through the eyes of potential schools. I feel crushed. And the feeling doesn't subside when I look at what might happen once I finally do get accepted somewhere. I cannot handle a great deal of school. I'm assuming colleges want you there full time. Med school takes eight years, how long would it take a person who can only take a few classes at a time?

And what happens after school, anyway? Will I still be as sick as I am now? Will I still be fighting to make it through a day the way I currently am? How can I handle a job in the medical field, anyway? It takes a great number of hours, a great deal of dedication. What will I be able to give?

And then there are the worries of having a family, something I've always wanted. If I'm sick, how could I handle caring for children? If I'm better, pregnancy could cause a relapse and put me right back where I was.

And these are my worries. Some of them, anyway.

But I look at right now. I look at my senior year of high school. I want to enjoy this, I want some semblance of the teenage life I've missed out on. I need my friends, but I don't know how to tell them so. I want to succeed, but my fears are beginning to get in the way. And, I so desperately want to persevere. I want to keep going, to make it through this. But there are the times when I think I can't. The times I just want to give up, I really do. I look forward and don't see a future for myself, I look at the present and see only bleakness. I question myself and my abilities. How far can I push myself, really? How long can I make it? I'm sick of being sick, but I have a hard time picturing my life any other way.

And that is when I begin living the un-life. I give up, give in to my fears. This can't go on. I have to find a way to make it. This is a trial, a time when I can stand and show just how strong I can be. I don't yet know what the balance is between trying harder and pushing myself too far, but I will find it. I just have to.

Change

2008-08-27T14:10:00.000-07:00

Nothing's easy any more.

Not that I want my life to be easy...

Still, it's a big adjustment. It's a change, and it's hard.

My life has never been anywhere near perfect, but I definitely consider myself blessed. I never really had to study in school. I worked, and I worked well, but it was never really hard. My mind retained information well. I was creative. I could write a good essay in about a milisecond. I considered myself smart, I held above a 4.0, I was heavily involved in school, and I liked it. I started singing in third grade. It was always something I was good at...it just...happened. I worked, but the work was easy. I opened my mouth, belted when I needed to, and liked the way it sounded. Singing was fun. Third grade was also when I began dancing. It was a fun thing for a few years, then I got serious about it. Dance came naturally, but it was still something I had to work at. I had to work hard. I had to sit in the splits every night while I did homework. I had to spend hours in the studio, and more hours crosstraining. But I loved (almost) every minute of it. Dance is a form of expression like nothing else. You move your body in ways that show frustration, hurt, sadness, happiness...beauty. I'll always be glad I had dance, because if nothing else it taught me how to work hard.

Why am I reminiscing? Why can't I still do these things? I got sick. Or, I am sick. And that changes everything.

I wish my brain worked properly. I'm amazed; I have had to drop all but 4 classes and the work I do in those, which doesn't look like much, is the hardest work I have ever done. My brain can't remember ANYTHING. It's frustrating. Maybe I could handle it better if I could express myself like I used to. So I go to singing. It's always made me happy to be able to make beautiful sounds. But it isn't so any more. Singing is painful. I can't breathe. It doesn't sound good. And trying to dance? Yeah, that doesn't work out so well either. It too is painful, and I cannot even remember choreography any more. Nor do I have a sense of balance.

So, there you have it. You get sick. You give stuff up. You dissapoint people, and lose friends. I wasn't expecting my life to go this way. It is hard. But I want to persevere. Gosh, I spend so many minutes in total self pity, I mean, what were the last few paragraphs? But you know what? This isn't everything. This isn't my life, really. I'm living for God. So if this is what he wants for me, I'm ok with that.

I look at how I am now, and a lot of it I hate. I see myself not doing anything, appearing lazy even though I'm working harder than I ever have in my life. I wish I could drive, and have a job. I'm scared about next year, which should be my freshmen year of college. How can I handle college when a trip to Target is about the equivalent of an African safari for me? But I also see changes which are good. I see myself as a more compassionate individual. I see myself as intelligent in different ways, even if my brain is a lot slower now. I know what matters, and I know what doesn't matter. Many people don't seem to have grasped that concept. And I see myself as being open to a new life, completely different from what I expected. This is life for God. This is life unknown.