Friday, June 29, 2012


Being sick is hard. Looking back over my life, it is one of the hardest things I've had to do. Even this morning, I'm sitting here with my hair half in a wierd looking ponytail, in track pants and a tee shirt. One thing a lot of people don't realize is that many chronic illnesses are actually invisible, like mine. So though I may look like a supermodel on the outside, I can feel like I'm dying on the inside. Even having a simple conversation, or doing a simple task, it's like an acting game.

"Ok, just a few more minutes. Keep breathing, there you go. Oh look at that, my feet are turning purple. I wonder if it brings out the color in my eyes. Who am I kidding, my eyes aren't purple. And, oh when was the last time I ate? Well I can't eat a brownie (Or whatever yummy sugary snack is being served) because I've already had (Insert sugary treat here) today. And... oh what was she saying? Focus, Alisha, focus. Here, lean up against this post. There you go, and if you do it casually everyone is just going to think you are super cool instead of dizzy. Come on heart, get some blood pumping, it feels like Antartica in here! Breathe, Alisha, just breathe. Something about that new movie, that's what they were talking about, right? Say something, nod meaningfully.... Hands, stop shaking. They're talking about the new movie they went to, why didn't they invite me? Well, if they did I probably couldn't have stayed out that late anyway. I should ask them about... what should I ask them about? Penguins? No, that's not it. Uh... actors, that's it! I should ask them about the actors. Come on, don't give up on me now!"

Oh, what strength it takes to get through a 5 minute conversation. I often find myself having those thoughts when somebody else is talking and I'm just supposed to be listening. It happened a lot during ministry team. But when I would try to move my leg to look at my feet to see if they were resembling a grape I would kick the person across from me in the shin.

Like I said, being sick is a constant marathon. I'm wondering if maybe I should start calling myself superwoman. And when the next well meaning person asks me how I am or tells me how good I look, I'm wondering if I should say, "Why yes, but don't let my supermodel good looks decieve you, on the inside I feel like I'm dying."

Ok, so I'm not a supermodel, I bear no resemblance what so ever to a particular actress, But I might just be supergirl. And this post might be kind of random, and lame, but let's just blame that on my sleep deprived exhaustion, shall we?
Sometimes you just have to find the humor in the bad days and find a way to laugh.

Wednesday, June 27, 2012

Wordless Wednesday... and then some

Sometimes I just want to live in France or Italy or New Zealand and make pictures and eat good food and write poems and sing outside loudly even thought people might stare. Sometimes I want to remember that moment between then and now when everything was okay and I knew deeper than the earth that everything was going to be all right. sometimes I just wish life were simpler and the days were shorter or longer (I can’t decide) and things would be alright. Sometimes all I want is to feel the ocean under my feet and the sky above my head and have the only sound be the wind whistling across the plains and over the trees like a symphony I wish I could understand. sometimes I wonder about what I’m supposed to do and who I’m supposed to be until I remember that I’m just Alisha and I love the here and now of today.

Tuesday, June 26, 2012

A composition of I's

I was told by someone to begin statements with I...
So here it is, a composition of I statements, for you.

I do love you, and am grateful for your friendship
I do want to hear about your life, to join with you in knowing the secrets of your heart
I do want to be able to talk to you, to be able to speak freely and openly
But I am angry at you
I am jealous, and frustrated every time you tell me about your life
It's like the grass is always greener thing, isn't it?
I want the life that you have, I want that perfect job, the perfect grades, the perfect love and life
And I know it's not perfect, and I know that everyone has flaws
But I know that's the way it seems from over here, as I am drowning in things that are a constant reminder that my life won't ever be 'normal.'
I know there is no such thing as normal, and that there are a million ways that it could be said so that it doesn't seem like such a huge deal
But it is a huge deal, to me
I am struggling, and I do feel helpless under the weight of all these things I can't fix
I do get frustrated, and angry, when I see your life and when I see you smiling and happy and having all of those things I wish I could have
I feel like you don't understand - actually I know you don't understand - and I feel like you're trying to take away from the hugeness that this is for me. Because this is a big deal for me, it is my life.
I know there is no right way to handle a situation like this, and I know you're doing the best you can
But I don't need your best. Your best is actually what I don't need, it's frustrating me.
I don't need you to try and make me feel better, to yank me up by my boot straps and ask me all these questions and try to make me see that your life isn't perfect
I don't need you to pretend like you understand, or even to bring up all these things about me being sick
I don't know what I need, and that's scary. As much as this is uncharted territory for you, it also is for me.
I need you to recognize me, as a whole person, with many parts, of which being sick is only one
I need you to sympathize with me on those bad days, to accept that you don't understand my life, and just to let me feel what I'm feeling in that moment
I need you to not try and make me see the bigger picture, or ask me a million questions. I know you're trying to help, but I also can't handle that in this moment
I need you to let me talk about it when I need to talk about it, and to not talk about it when I don't want to talk about it
I'm not totally sure of what I need. I need you to understand, but I don't know how that looks
I need, I want, I feel, I am...

Monday, June 25, 2012

Like a rocksong

Rock songs aren't pretty. They aren't the lullaby melody that is found in soft songs, and they aren't the get up and dance stuff that you find blaring from the headphones of every tween in america. It's eccentric, a little bit sexy and a little bit like broken glass, a little bit rough, like all the sound is being wrung out.
I, for one, am in love with rock music. It actually makes me sleepy (Which I've heard is kind of wierd.) I have this whole playlist on my Ipod called Anger management, and it's full of rock songs. Not like heavy metal, shrieking loud rock songs, just rock songs, a little rough around the edges, a little loud, a little bit like broken glass, a lot eccentric.
Sometimes you have to let the wild thing inside of you grow wings and go be whatever it wants to be.

I think I'm like a rock song. A bit eccentric, a bit wild and untamable, a bit rough around the edges, a bit like broken glass. It's not pretty, not soft spoken lullaby's or dance music blasting through speakers. It's all being wrung out.
 I think it's that tension that makes the song so beautiful.
It's the unbridled emotion that resides within the rock song, the rough around the edges genuine personality and flavor. I think the rock song isn't taming itself to become more graceful like the lullaby or more catchy like the pop song.
Rock songs contain fierceness, so raw and real and strange. In the song there's this story that is dying to be told, an uncontainable mystery.

I'm like a rock song, as these words are being played that are so fierce and raw and like broken glass. Ever notice how, when a musician is playing a song, he leans over the guitar, as if protecting the very notes that come from the most broken places within him, the place where music is born? It's like that, as I am leaning over in an effort to protect this song and to protect my heart.
My song isn't clean cut and all in a row. It's the frantic wail of a rock song, the loud pulsing beat, the thrashing and crying and howling and brokenness.

It's not perfect, or catchy, or easy. It's heart breakingly painful and raw and rough, eccentric like broken glass. It's a rock song, and it's me.

This is my rock song, real and alive, not defined or clean cut, but edgy and raw. It's wild and untamable. I don't want to spend my life holding in this rock song that isn't pretty or neat. I want to find these rock song chords that make up my melody, that hold in them all the passion and emotion, all the fierceness and brokenness that is within me.
I'm going to learn how to play my rocksong, how to let free all this fierceness, this noise that is eccentric like broken glass. Because it's the tension that makes the song so beautiful. It's the raw, real pain that makes it worth listening to.

I'm like a rock song. And I am going to find the chords of this song, and play the notes. I am going to set free this wild thing inside of me and let it find words and notes and let this eccentric broken glass become the echoes of a rock song.

Italics from You're more like a rocksong and lean in again and let it go by Natalie Lloyd

Friday, June 22, 2012

Exams are over!

I was trying to think of something cool and classy to name this blog post, but who am I kidding, the onlt name that fits this post is I'm DONE!!!!!!!!!!!!!!!
I finished my last exam this morning, and I am beyond relieved to be done studying and cramming and stressing. I won't know the results for a couple of days, but I think I did alright.

Going into the exam, I was like this:
I approached my exam looking something like this:

And then, after crawling through 2 hours of an exam, I looked something like this:

During the last 5 minutes of my exam, I wonder if I looked something like this:

So exams are done, and if you'll excuse me i think i am going to go lay on the floor and cry with relief.

(And yes, I am realizing this is a very dramatic post.)

Thursday, June 21, 2012

Thankful for this day (just being as we near the end of exam week)

Tomorrow is the day of my final exam, and I can't wait! Not that I'm overly thrilled to be doing an exam, but I am so ready to be done.
And if you are thinking I spent today studying, you are wrong. I spent today in the sunshine, reading a book, trying out cool new at home natural recipes that are supposed to do cool things and making yummy food. And it's relaxing and I'm not stressed or freaking out. I'm surprisingly calm.
I'm feeling confident I'll do ok on the test tomorrow (Thanks to my wonderful math tutor!) so today I'm taking some time out of my day for me, to sit and relax and just be.
I was inside for all of half an hour today (While I made lunch) and I'm really not missing the TV, or any of the other things I would normally be using to keep myself occupied while my mom's working and the kids are at school. I'm just enjoying the sunshine, and feeling great, and not worrying about anything.
Today, I'm refusing to think of what could go wrong. I'm refusing to think about (Or stress about!) my exam. I know I'm prepared, I know I've done all these practice questions, and I know I will have one last chance to study at tutoring later today. I'm refusing to think about doctors and feeling sick and bad medical reports.
I'm just being, just sitting and enjoying today, because today is all I am promised.
And if this post makes no sense it is possibly because I've been sitting out in the sun all day, and right now the sun is shining down on my back so I can't see the computer screen without a glare.
And I have no idea if I am going to post this, but I just wanted to write and say that I am thankful for this day. I am thankful for the sunshine and the birds flying above me and for this opportunity to just be. I'm thankful for my wonderful math tutor who is helping me prepare for my exam tomorrow (Which i feel confident I will do well on) and I'm just thankful for this day.
So tell me, what are you thankful for today? And, if you're already done your exams (If you are, I am so jealous!) what are you doing to enjoy summer? And if you're not, best of luck to you, and remember, in the middle of this crazy exam week, take some time just to be, and to be thankful for this day.

Wednesday, June 20, 2012

Every Part of Me

I feel like I haven't posted in a while, like really posted.
I wrote my post for father's day, and I did a brief 7 quick takes, but I haven't really posted for 12 or so days.
I don't know when I'll get back to posting regularly (not just popping in every week or so with a guilt post!) Maybe when I get my life figured out (Though we all know that will never happen) or maybe when I actually have time to sit down and breathe and get my thoughts in order.
It's been a crazy week. I didn't post for a while because my own computer was in the shop, and though I did post I didn't feel like blogging until I had my own space back where I could blog to my heart's content. And then life happened, and things got in the way and stuff happened and I couldn't get my thoughts out in such a way that it wouldn't sound odd. I'm still not back to posting (This is one of those guilt posts I was talking about) and I'm not sure when I will be, when I'll be able to write again and make words that make sense and think thoughts that make sense and just think and breathe and BE!
This is exam week, also known as the craziest most stressful week in the entire high school education year. I had an exam yesterday, and my last one is on Friday. I can't wait! I'm counting down the days until I can burn all those piles of homework and ship off the text books and just enjoy life and BE without having to constantly be thinking about school and which assignment is due when and which teacher needs which form and when the next unit test is. I'm nervous for my exam, but I think I'm going to do ok. So, if you think of it, try and remember to pray for me Friday morning!
It's also been a stressful week as this week, my pump has decided not to work AGAIN! That means it's late nights, and frustration and exhaustion. Even if I'm not up that late, it is really exhausting, and just another reminder of how different my life is. It did go a while without beeping, and now that I'm looking back on those days I'm wishing I would have enjoyed them more. It was bliss, and as easy as it was to fall into the pattern of not constantly worrying and holding my breath, I was surprised, and saddened, by how easy and how natural it was to go back to this pattern of being up till 12:30am fixing a beeping pump.
It's also been more phone calls to doctors, more waiting, more tests (I have calluses on my fingers to prove it!) I don't know exactly what's going on, but it's more waiting. I'm kind of getting used to this waiting. I've also been feeling pretty lousy lately, which adds another layer to my exhaustion.
Reading over this, I'm realizing how busy my week sounds, how stressful, how exhausting. And it is, exhausting I mean. It's tiring and it's exhausting and it's all these things I wish I didn't have to go through (I'm pretty sure every high school student wishes they didn't have to do exams, but you know what I mean, all this other stuff)
But this is what I have to go through, and this is my life. It's exhausting and frustrating and a constant battle. But it's my life, it's all I've got. And it's so foreign to normal people, and that's something I've been struggling with (How to balance my 'normal' life and my sick life, trying to not shut myself down because normal people really don't understand!)
But it's a part of me. Just like I have blonde hair and hazel eyes, just like I change my blog backround more times then I can count because I never like it how it is, just like how I'm addicted to Grey's Anatomy and how I love to write.
Imagine if you were only noticed for one trait, like what color your hair was or what hand you wrote with instead of all of you.
It's like that. Yes, I'm sick and sometimes that fact is so overwhelming I forget to see anything else, but in all honesty that's not who I am.
I'm a girl, who has blonde hair and hazel eyes and is addicted to Grey's Anatomy and loves to write... and I just happen to have a chronic illness.

Sunday, June 17, 2012

Daddy, did I ever tell you...

Daddy, did I ever tell you that you're my hero?
Daddy, did I ever tell you that I am so proud to be your daughter?
Daddy, did I ever tell you I love you to the moon and back?
Daddy, did I ever tell you that I am so thankful that God gave me to you and mom?
Daddy, did I ever tell you that I am so thankful that you stayed with me on those long nights in the hospital?
Daddy, did I ever tell you that you still scare away all my monsters and make me feel better?
Daddy, did I ever tell you that, because of the person you are, I am a better person?
Daddy, did I tell you enough that I love you?
Because I do, daddy, I love you. I love you so much, and I am so thankful that God let me be your daughter.

Friday, June 15, 2012

7 (ah... 5 and a half) quick takes ~ Volume 8

1. So you may have noticed there's no picture today. That would be because my computer is broken, in the shop and i can't access any of my old computer files. so i'm stealing away these minutes, typing away on my mom's computer. hopefully my old one will get fixed right away. but until then, that's why i haven't been posting! I'm still here!
2. So... finals. I have all my exams this upcoming week, english on tuesday and math next friday. and then school's out! today ended my last day of actual classes so now it's just studying until exam time! it doesn't really seem real yet, that i have the exams and then i'm done!
3. So... remember that post I wrote last sunday, This is the Church I go to? (If not, check it out here)well... I got an email from my pastor this week... and he wants me to read it in church! to be honest, my first response was "There is no way i'm doing that! Are you kidding me?" he wasn't kidding... so, this sunday i'll be reading that blog post in church. it's actually a funny story (Ok, it's not that funny!) but for a while i'd really been wanting to share my story and stuff like that. God kept closing all these doors on stuff I was planning on doing (writing a book, for one) so I was like "Ok, well i'll just wait." and then my pastor emailed me, and asked me if i would be willing to do this. it was kind of like "Seriously, God?" All of a sudden there was this opportunity right in front of me. I almost laughed, because I am not good at public speaking (Our church isn't that big, but still...) but hey, why not? so over the edge i go, into a land that is so barren of the familiar and the safe and the comfortable but that is so full of God's promise.
4. ok, I started this post yesterday, and today, as I opened it trying to think of something to write about, I simply stared at a blank screen. I've been studying for exams (which is very exhausting) and the teachers are on edge and the students are on edge. we're all counting those days when the final exam can be submitted and we're free. I just finished a math review sheet and now I should probably do some english review, but i figured i should probably finish this blog post so you people know i haven't dropped off the face of the earth. and now i'm rambling, and my eyes are slowly closing...
5. So this morning, just to prove my point, i went to make some breakfast. i put the toast in the toaster, grabbed the peanut butter and put some on the toast. and then... i went to the sink, and put the peanut butter in the sink. it took me a minute of just staring at it to realize that wasn't where the peanut butter was supposed to go.
6. i feel like i have nothing else to say, which makes this a really bad 7 quick takes, and i should probably delete it, but i really wanted you to hear about those first 3 (?) things, mainly the third one. So, can we settle for 5 and a half quick takes???

Sunday, June 10, 2012

This is the Church I go to

This morning I got myself out of bed, got dressed, and went to church...
After this particularly rough weekend, I was greeted by smiling faces (And coffee!)
There was one of my youth leaders. She sent me a message on Friday, saying she had missed me at youth and had a hug waiting for me. That's what I was looking forward to as I stumbled into church that morning. And as she gave me a hug, I felt myself relax. It was as if my body was saying "It's ok, you can rest here. You don't have to pretend." So, for the first time, I talked honestly about the struggles that I've been facing this weekend. I was leaning in, being real and honest. I wasn't standing alone trying to face the storm, but leaning in.
And during the service, the pastor was talking about doubt. He said "For the next two minutes, talk to someone next to you about the last time you doubted."
I was sitting at the end of the row, and there was two other people at the opposite end of the row. I figured they would talk amongst themselves and I was ok with just reflecting, because I knew the last time I'd doubted (It was actually yesterday!) But then this guy came over right into the seat next to mine and looked me right in the eye and said, "When was the last time you doubted?"
And I don't know what it was that caused me to be honest with this guy. I'd never seen him before, he was probably twice my age (Not quite, probably in his twenties, though) but it was like the words came out and I was real and  I told this guy (Whom I'd never met) that it was a rough weekend and that I was doubting God when He said He knows the plans He has for me, and that He knows what he's doing. And then this guy shared with me about the last time he doubted that God knew what was best.
And during the service, I got this text. I opened it, and found a message from Paula. (Yes, we text each other in church, but this one was good, trust me!) And it was a Bible Verse. It was Hebrews 11:1-3, talking about faith being sure of things we can't see. Another reminder, another moment when it was like God was saying to me, "This is for you."
This Sunday was a whisper from God, saying, "It's ok, you can rest here."
And that's what the Body of Christ is, isn't it? A place where you can rest, and a place where you don't have to pretend. It's love and it's hope, and it's moving and touching those places in my heart I thought were growing cold and it's whispering, "You are loved, you belong here, it's safe here."
This is the church I am proud to go to, a church that loves and whispers the hope of Jesus. It's ok to be in a rough place, it's ok to doubt and to wonder. It's a safe place to be real and lay your burdens down at the feet of Jesus.
You can rest here, it's ok, it's safe. Here is a place where you belong, where you are loved. You don't have to pretend, come as you are. Rest here, lay everything down at the feet of Jesus, and know that you are so dearly loved. You are not an island, you are here, among the body of Christ. You belong here.

Saturday, June 9, 2012

Pity Parties and Thankfulness

Ok... Seriously?!?!
I was just having a mini pity party. It's been a really rough weekend, and I was just feeling really alone tonight.
It's the kind of alone you feel when you know there are so many people that love you and care about you, but you just feel like no one really understands.
I was trying to focus on the positive and be all bright and cheery but I really just wanted someone to talk to who I knew understood. I was just feeling... blah. And I knew I could pick up the phone and text any one of my friends and that they would offer a listening ear and words of support, but I didn't feel like bothering them.
So I logged on to SBW, and I did some planning (for that top secret idea that's becoming a reality) and I watched some videos on youtube of some other inspiring gals with chronic illness.
And then I logged into my email account... and there it was. It was a comment on my last blog post, and the one sentence that stuck out to me was, "Sometimes I think the hardest part of being young and ill is feeling alone. So I just wanted to remind you that you're not."
Perfect timing!
So yeah, I'm in a rough place tonight, and I do really want someone to understand. But I'm not alone in this.
So today I'm gonna be thankful for people, in the middle of this big mess.
I'm going to be thankful for my daddy, who's text message brightened my day. Only a few more days until he's home, and I can't wait!
I'm going to be thankful for my friend Jorge, who's birthday is actually today! Last night, when my whole rough weekend began, he was there to talk to me and I know he actually understood. Every time I talk to him, he makes me day. Love that guy, and am so thankful he volunteers his time to talk with us sick teens over on StarBright World.
I'm going to be thankful for the wonderful woman behind that perfectly timed blog comment, and for all of the wonderful gals over on youtube who so bravely share their stories of their chronic illness journeys. It reminds me that I'm not alone, and I am so honored to be part of such a wonderful group of people. (Ok, I was trying to figure out some way to put the secret society of the sick into that sentence, but I couldn't figure out how it would work. Brain fog! anyway, I love that term!)

So there's my 30 seconds of optimism today. Time to go check my blood sugar (Another wonderful side effect of this rough weekend) and get my pump ready. And then it's time to curl up and watch a chick flick.
What is your 30 second optimism break today? What are you thankful for? And if you're having a pity party tonight too, come join me! we'll be pitiful together!

Wednesday, June 6, 2012

Right Where I'm At

I read a blog post where this thing was mentioned called Right Where I am. It's about where I am today, not where I was, not where I'll be tomorrow, but where I am right here in this moment. Of course my fellow blogger added a date on hers - the days that have passed since she lost her sweet daughter.
I was going to write a date on mine, but I can't remember how long I've been undiagnosed (something like 2 and a half years.) and I haven't gotten a diagnosis yet so I can't count the days that have passed since I got my diagnosis. So I'm not going to have a date, I'm just going to write where I am.

Right now I'm somewhere in the middle of the stages of grief.
I'm somewhere in this storm of grief. I'm grieving the loss of the girl I was, and trying to adjust to this new life - to this new kind of normal. I'm not quite sure which stage I'm at, maybe anger, maybe depression, maybe somewhere between the two. Not acceptance, which was where I thought I was a month ago. Whenever I thought I'd dealt with everything and was moving on, another piece emerged, like bits of wood floating up to the surface that only hint at the shipwreck below.
I got bloodwork today, and the rain seemed like a good soundtrack to my day. It wasn't sad, but hopeful. It was calming and peaceful.
As the mist washed over the farm land, I remember thinking there was something so magical and precious wrapped up in that moment.
When I was a kid I thought that rain was God crying. On a particular drive home from a family vacation, as we drove through a thunderstorm, I remember me and my cousins making up all these things, like rain was God spilling his waterbottle and thunder was God playing the drums and lightning was God taking a picture and we would always try to smile out the window right when the lightning hit. And I remember the summer when I was 12, releasing my wish balloon in the pouring rain and my dad saying that, in literature, rain was a sign of renewal.
Today, I think the rain meant a lot of things for me. This morning, on the drive to the hospital, I think it was a sign of hope. And this afternoon, with a heavy heart, I like to think like I did when I was a little girl, that rain was God crying and that he understood my heartache on this day. I like thinking like that, like God knows how hard this is, and He understands when everyone around me doesn't, and He's crying along with me.
I'm also reading this book, Where You'll find Me by Jenny B Jones, and I can't say exactly why I relate to Finley, the main character, but I do.
Today, I got an email from a very special friend, encouraging me. I complained to her (I'm getting tired of complaining!) and she graciously helped me think through everything. I am so blessed to have this wonderful woman in my life.

So that's where I'm at right now ~ 2 and a half (?) years being undiagnosed. And I know no amount of editing this post will make it perfect, and I know if I read over it I'll probably delete it.
Where I'm at: Finding my way, grieving into God's strong arms but still trusting, Still hurting and angry and confused and exhausted. I'm not at my best, and I'm trying to be hopeful. It's not a big success some days. I am also so thankful I have a God who is willing to meet me right where I'm at. And I believe someday I'm going to make it through this, and I'll come out on the other side very different then when I entered but also the very person I'm supposed to be.

"Sometimes when we were stuck, we'd stop for a minute to rest, regain our strength and let the waves take us for awhile even when we weren't going anywhere, it was still sailing"

Monday, June 4, 2012

The Climb

I have this mountain which I must climbIt is a mountain I climb daily, hourly, every moment
It is long and the path is rough and I'm exhausted
This is the mountain, and there is no other way, no other trail
This is the mountain of chronic illness
This path I am taking is filled with sickness and pain, medical equipment that causes more grief then good, and exhaustion
It leaves no room for me to feel anything else
From where I stand, this mountain seems unclimbable, with no top in sight
I wish there were adequate words to describe how much this hurts, or how much I wish I could stop, and sit down, and let the battle continue on without me
And I climb it daily, hoping one day, maybe, I'll be able to see dawn breaking
It sucks the life out of me and on these sleepless nights and during these pain filled days... I wonder
I wonder what I am learning as I am climbing, or what I'm supposed to be learning
I wonder when I will finally be done climbing
I wonder if, when I get to the top of this mountain, I will be able to look back and say "Look at how far I've come, look at all these hurdles I've overcome, look"
And on this mountain, I feel foolish for dreaming of this place where one day I will be at the top
This hike up the mountain takes all of me, and I have no room left
I don't know if I'll get through this
I'm falling and stumbling and hurting
And there are no more tears left to cry, no more words left to say, there's just hurt
I wish I could make this mountain move, or find some other way
There is war, but against what? Against myself? Against this disease that is made out of my very being? That is as much a part of me as my heart is my heart or my lungs are my lungs?
This is an uphill battle... exhausting and breaking me down to nothing
But it isn't about how fast I get to the top, or about what's waiting when I finally reach the end and find healing. As I am here, right now with my broken spirit and my exhausted body, I am finding there is no out, there is only through. It's all about the climb

Sunday, June 3, 2012

30 things about my invisible illness you may not know

Invisible Illness Awareness week is past (September 11-18) But my friend shared this today on her blog, reminding me of how importent it is to raise awareness for these invisible illnesses and to share your story. So here are 30 things you might not have known about my invisible illness:

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Glycogen Storage Disease type 1A, an esophagial ulcer and an undiagnosed illness

2. I was diagnosed with it in the year: GSD:1997(?), November of 2011, And currently undiagnosed

3. But I had symptoms since: well, for the GSD I was born with it so I've had symptoms since I was born, and for the other thing, 12ish.
4. The biggest adjustment I’ve had to make is: Not having the freedom to do everything. In having GSD, my life is lived by the clock. And also having this undiagnosed illness, I don't have a lot of freedom because it's constantly either not feeling well enough to do anything, or planning out my days so I don't get too overwhelmed...

5. Most people assume: I'm healthy, or that this will go away over time. Both of those statements aren't true. I'm not healthy, I am sick every day, every hour, every minute. I am usually in pain every day, every hour, every minute. And also, it won't go away (I'm not sure about the undiagnosed illness because we have no idea what it is! BUT there is no cure for GSD)

6. The hardest part about mornings are: Getting out of bed. I usually end up doing it in stages, lay there for a while, wait, then move to sitting up, wait, get out of bed, wait, climb the stairs...

7. My favorite medical TV show is: Grey's Anatomy! Also, Private Practice.

8. A gadget I couldn’t live without is: Well, besides my pump, which I couldn't live without in the literal sense, I couldn't live without my laptop, in the figurative sense.

9. The hardest part about nights are: A couple of things, actually. the first one is laying in bed, in pain. Some nights I can actually hear my heartbeat and feel it shaking my body and one thing leads to another and then it's worry. Worry is another big one, worry about if I'll wake up in the morning, worrying about if my pump will wake me up in the middle of the night (Which is another hard part about nights, no sleep! Half due to my pump beeping and half due to insomnia!)

10. Each day I take: Well, I'm supposed to take a mixture of vitamins and some pills for my ulcer. Sometimes I am lazy forget and don't take them. I'm usually pretty good about taking them. And now that we're talking about it I realized I haven't taken my meds yet!

11. Regarding alternative treatments I: am willing to try it. I don't know if I've really done anything yet that's considered an alternative treatment, but I am definatly open to trying

12. If I had to choose between an invisible illness or visible I would choose: That's hard. I think with a visible illness it would be easier to get some recognition and for people to understand, but I don't think I would want a visible illness. With an invisible illness, there is a part of it that is kept so personal and I get to decide who knows and who doesn't. Also, I notice the looks I get when I am out in public when I'm all hooked up, and it's not easy to have people look at you like that. I don't know if I would be able to handle that all the time!

13. Regarding working and career: For the past couple years, I've been working in childcare, which I love doing. Sometimes it can be really hard and exhausting. In the future, I would love to get into medicine. Either get my nursing or go to med school. My big dream would be to open up a retreat center for children and teens with chronic illnesses.

14. People would be surprised to know: Exactly how hard it is. Even some of the people closest to me who see me in my everyday life really have no idea how hard it is. There's no way they could know, because they've never lived it.

15. The hardest thing to accept about my new reality has been: Since I was born with GSD, it's been my life, always, and I think it would be really wierd NOT to have it. But with this undiagnosed illness, it's been really hard to adjust and accept there are days when I can't do it all. I can't pack my schedule so full anymore, sometimes I will have to cancel plans and not go out because I'm either in too much pain or too exhausted.

16. Something I never thought I could do with my illness that I did was: Last summer, when I went on a missions trip, daily I was doing things I never thought I could do. Apparently I looked like I handled it ok because everyone on the trip was commenting on how strong I was, but it was really hard. But the trip was totally worth it, and I loved every minute of it, and I would totally do it all again!

17. The commercials about my illness: There aren't any.

19. It was really hard to have to give up: I don't really know, actually. Probably the most obvious answer is getting out and doing things. There are times I can't go to youth group, or times I can't go out with my friends.

20. A new hobby I have taken up since my diagnosis is: One thing I love doing is writing. Physical activity was something I never really did a lot of. It wasn't that i couldn't, it was more so that the physical activity made my blood sugar drop and if we weren't careful I would go hypoglycemic. And even now, with this undiagnosed thing managing my life, I still love to write.

21. If I could have one day of feeling normal again I would:  EVERYTHING! Seriously, this is like letting a kid loose in a candy store! I would want to do everything, I would want to stay out late with my friends and ride my horse (and actually feel good enough to do it!) and do all those things normal people do.

22. My illness has taught me: It's taught me to never take anything for granted. I've realized every single day is a gift. And I've learned who my true friends are, and who is really importent to me. I've grown in compassion and empathy. I've learned I have more strength then I ever thought possible.

23. Want to know a secret? One thing people say that gets under my skin is: There are lots of things people say that can get under my skin, and some of the wierdest things too that I know they mean to be encouraging. I've heard "Just pray about it," more times then I can count. or "Trust God," as if I'm not doing that already. I also hate it when people say "Oh, I know what you've been through, I know how it feels." Uh, no, you don't!

24. But I love it when people: Sit with me. And I kow that's wierd, but I love when people just sit with me. They don't have to say anything, but having them there, and knowing they want to be there and want to help me through this, that's one of the biggest things anyone can do for me. That, and hugs. :)

25. My favorite motto, scripture, quote, etc. is:  Just one? I have a lot of them that I go back to when I need encouragement. I think one of my favorite verses  (I think it's like the favorite Bible verse of all sick people, I've heard it so many times!) is 2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me

26. When someone is diagnosed I’d like to tell them: I really like what my friend wrote for hers (Or stole from someone else to post on hers) so I am going to re-steal it and put it here, because I think it's so true: “It will be hard, but it will be ok. You know your body best, you need to be your own advocate, and you need to be strong in spirit even if your body is weak.” 

28. The nicest thing someone did for me when I wasn’t feeling well was: When I was going into the hospital last November (same time I was diagnosed with the ulcer) and have surgery, all my friend's wrote my these letters. Through out my stay I was able to open these letters and see a bit of home. It was like having a piece of my friends there with me, and it was wonderful to know they were at home supporting me and waiting for me to come home, and they were praying for me. I still have those cards, and go back and look at them when I am having a hard day.

30. The fact that you read this list makes me feel: Grateful, and hopeful that maybe you have a better understanding now of what I go through on a daily basis.

Friday, June 1, 2012

7 Quick Takes ~ Grateful Edition

In This season of life, I so often forget what I'm thankful for. It's getting harder and harder to choose joy and to take a moment in the chaos that has become my life and choose gratitude. So... here's my moment of gratitude...

1. I am grateful for the good news that came with the results of my friend's CT scan today. She's such an amazing person, and ever since I got the news that something was wrong and that she would need this test, I was covering her in prayer, so hearing this news today was such a blessing. I am so happy for her.
2. I'm thankful for emails from a friend that are always so full of hope and so inspiring to me. This woman is truly amazing, and I am grateful she takes time out of her day to send me these little bits of inspiration and hope. She is such an amazing woman of God, and I am so grateful I have her in my life.
3. I'm thankful for my math tutor, Melody, who is really wonderful at helping me understand all the complications that come along with high school math! Also, I just found out, the first assignment I got since working with her, I actually passed! *insert happy dance here*
4. I am thankful for my friend Sami (You can see some of her writings here and here) She's such an amazing person, and I am so grateful that I'm able to call her my friend. Very rarely in this life do you find people that actually get it, and Sami is one of those people that do get it. I don't know if there are any words to describe how much she means to me, but just so you know, Sami, I am so thankful for you!
5. A little idea spinning around, a passion shared that is looking like it's coming closer to finally being able to touch. I can't tell you a lot about it, but I am very excited...
6. For the long weekend, for resting and relaxing and breathing and reading blog posts that connect with you in ways that make you long for a place you've never been, and for the parade here tomorrow and for sunshine.
7. For memories and dreams of someone who is now heaven's angel. As much as it hurts to wake up and remember they're gone, it's a wonderful thing to remember, and to dream.

So there's my 7 moments of gratitude. I hope everybody has a great, grateful weekend!