Stick

I've got the talking stick, what am I supposed to talk about?
The hours are slow. Most of the time I just stare at the ceiling. It hurts to even breathe.
This is the side of chronic illness that isn't so pretty. It's not butterflies and rainbows and positivity or even brutally honest jokes on pinterest laden with dark humor. This is real. This is lying in bed for hours at a time when it hurts too much to get up.
It's just a flare, I tell myself. It will get better, right? One day out being normal and I'm in so much pain it hurts to breathe, or move, or even think sometimes.

Am I supposed to talk about my feelings? I don't know... I'm good. I feel good. My feelings about being sick... I don't really have any feelings about being sick
Some days are worse than others. Some days it feels like the only noise I can make is harsh and fierce and unprecedented. I just sit there and cry. Not because I'm sad. I'm not sad. I'm just... tired.
I'm tired of living in this body that's broken down and tired of people not understanding and tired of having to defend myself.
Some days I look in the mirror and barely recognize the girl I see there. She's so pale, and her hair is matted to her head and she has no makeup on. Her eyes are kind of empty and sad. She looks fragile. She doesn't look like me.
But, then again, I don't know what I look like anymore.

I can show you. You can touch it, if you like.
See this scar here? This is from where I cut my knee open when I was learning to ride a bike.
And this one here? That's from when he broke my heart.
And this one, this one right here, that one is from the IV in my neck I had when I was a baby.
That one is from the surgery
And that one is from the monsters, the little ghouls that lurk in the dark places of my soul. You don't see them, really. You don't see their scars. But I promise you they are there. I promise you sometimes my thoughts can do more damage than the slice of a scalpel.

They told me I'd be getting sick but actually I'm just getting awesome
Considering everything I'm lucky, right?
I have an amazing support system, fabulous doctors, and the chances of me dying from my disease is pretty slim.
I have this little book I keep beside my bed, and I write down things I'm grateful for. I'm at 600 or something like that.
Want to know what the first thing I wrote in it was?
My crazy sexy chronic illness.
Because I'm grateful, I am. I'm proud of who I am and I wouldn't want to change.
Not to brag or anything, but I think being sick has made me awesome. It's who I am. Or maybe it's just showed me who I am.
I'm Alisha
I'm 16
I'm a writer, a dreamer, a daughter, sister, niece, cousin and friend
I'm a child of God
And, oh yeah, I just happen to have a couple of chronic illnesses
and I'm kind of awesome

Sure, I know that my body is trying to eat itself, but what if it isn't? What if it's changing?
I think I might be turning into glass. I think all my bones and all my muscles and all my skin are turning into glass. Hard, smooth and clean. Fragile, yeah, but strong.
I watched this movie once, about a little glass doll. She was broken, her porcelain legs shattered and the edges all jagged. The powerful wizard, he fixed her using some glue.
She turned out to be really brave. She was made of glass, yeah, but she was strong.

You'll think I'm nuts, but I've got the talking stick

http://www.freshink.com.au/stick/

Under the Bed

Dysautonomia: What You Need to Know in 5 Minutes or Less

I saw this and had to share
As Dysautonomia patients, we are constantly clarifying things, telling people what it is (And what it isn't), telling people how to spell it and people telling us what we should do to get better (As if we haven't already thought of that!)
So, here's a quick Dysautonomia: What you need to know in 5 minutes or less


Dysautonomia : What you need to know in 5 minutes or less

Kony 2012 is not my passion... part 2

To me, it's all an extension of prolife... Understanding the intrinsic value of each tiny life... In the womb, or kidnapped from their bed in Africa. I might not understand the vision of this particular organization that is calling the united states military into action, but I stand with my brothers and sisters that want to see an end to injustice, and protection of the innocent

The whole issue of Kony 2012 is confusing me. I don't know a whole lot about it, so I am just posting inklings of my not fully formed thoughts. The comment above (on my initial post... you can read it HERE) was thought provoking, and once I read it I knew THAT was what I wanted to say.

Like the comment said, I don't understand the vision of this particular organization that is calling the US military into action. I don't doubt that Kony is a criminal, but the whole organization of Kony 2012, the whole idea of getting the US military involved... that causes me to pause. The issue of Kony 2012 is something I've been wrestling with ever since I watched the video for the first time. It breaks my heart to hear of these great injustices going on in our world. I believe that every life is of value, in being a voice for the voiceless.

I guess with saying all that, I believe that Kony is an evil man and needs to be stopped, and that behind the Kony 2012 campaign are good intentions, but I don't believe in Kony 2012.

http://visiblechildren.tumblr.com.nyud.net/ (I'd encourage you to read this article (I liked it, and found it made me think) read a bit more into it and develop your own opinion before jumping on the Kony 2012 bandwagon.)

Kony 2012

I wasn't going to watch this last night. I had things I wanted to do, I didn't know if I could give up the half hour it would take for me to watch this movie. But the link was suddenly showing up everywhere, being sent to all these people. Finally I decided I should probably watch it, just to see what everything was about. So I watched it, and that half hour was well worth it.

http://www.kony2012.com/sharefilm/?utm_source=Facebook&utm_campaign=kony2012&utm_medium=web

The little things...

It's the little things. Sometimes it's in the little things when you find hope, when you find the courage just to make it through the day. It's finding a blog post that I can relate to, or says the right thing. It's the song that keeps echoing in your head and Grey's Anatomy marathons and quotes that are so fiercely beautiful and the Food Network. I wanted to share some of my little things, the little things that have kept me going over this past little while.
http://jstarshollow.blogspot.com/2012/02/oh-places-you-go.html

http://natalielloyd.blogspot.com/2012/02/paid-in-roses.html

http://sojourner-ephraim.blogspot.com/2012/02/valentines-chocolate.html

http://www.youtube.com/watch?v=Jqng6SVDclc (Moves like Jagger by Maroon 5. I don't usually like to get songs that are popular, but I kinda fell in love with this one! There's actually kind of a funny story behind this...)

"Jesus. He met us right where we were, right there on the cold hard tile of my sun room, and He took two broken people, so different and yet so much more alike and showed us the scars on His hands and said its ok if we have some too because the scars are always drawing us to Him."

"Hope is like a bird that senses the dawn and carefully starts to sing while it is still dark."

"She wasn't bitter. She was sad though. But it was a hopeful kind of sad. The kind of sad that just takes time."

"A bird doesn't sing because it has an answer, it sings because it has a song."

Beautiful Hope

My heart is so full it hurts. It’s not the bad kind of hurting though, the kind I’ve experienced far too much of these past few weeks. It’s the good kind of hurting, the kind when your heart is so full and it feels like a weight has been lifted off your shoulders and you can breathe. There are so many heartaches in life, so it’s nice for a moment to come along that’s full of good heartache.
I don’t know if I can even explain it, this kind of heartache that comes with realizing how, even admits all this trauma, incredibly blessed you are. It’s the kind that comes with being paid in flowers, of memories of that perfect Sunday afternoon, of reading a blog post that makes you smile on the inside because you just get it. It’s the kind of happiness that comes with knowing all your time spent watching the food network paid off because in your hands is the best dish known to man (Ok, not quite, but the best dish ever made by your ten fingers.) It’s sunshine and feeling brave and love and…do you feel it? It’s hope. Its hope and it’s shining and beckoning me to find room in my cold, tired heart for its candle. It can’t promise me much warmth, or much light, but it says that if I come close enough to the tiny flame, the cold darkness won’t be as noticeable anymore. It’s hope, it’s something I haven’t felt in far too long… and it’s beautiful.

http://www.girlzofgodbook.blogspot.com/2012/02/girlz-like-you-interview-alisha-h-15.html
(Ok, this is was from an interview that I did recently. Just thought I'd post it incase anyone wanted to read it. Yes, when I got the email asking me to do this I actually did laugh, because earlier that day I was talking to myself about this very issue, and deciding how bad it would be for me to try and give advice to other people when my life is so crazy and I feel like I know so little as it is. (Did you notice the last question?)

Laughter and Love = Best Kind of Medicine

Saw this video today and fell in love. I literally have no words. It is so true.

http://www.youtube.com/watch?v=OAlyHUWjNjE&feature=player_embedded

So here's to lunch dates and laughing and amazing friends to share Sunday's with.

Pretending...

I'm heading in for more medical tests tomorrow. I guess I'm tired, of picking myself up and brushing myself off after every attempt that didn't show anything, of fighting, even of the inconvenience of it all and the brutal reminder that this is my life and I am not given the luxury of spending tomorrow in school like most kids my age, but instead I'll be spending it at the medical testing diagnostic clinic where you have to have this for one test, but not for the next one, and you can't wear metal for this test and you can't eat or drink before this test, but you have to drink before this one.
Like the lyrics from one of my favorite songs say (You can actually listen to the song here)
I'm sitting in a room made up of only big white walls And in the hall, there are people looking through The window in the door They know exactly what we're here for Don't look up, just let them think There's no place else you'd rather be and now you can't turn back because this road is all you'll ever have
That's really what it's like, sort of, just don't look up, don't let people think you would rather be anywhere else. This is it, this is what you have. Of course, living this way has made me a brilliant actress (at least I like to think so.) But it is honestly so much pretending, pretending to be ok, pretending that really the hospital or the medical clinic are the best places to spend a Monday when you're in high school.
But I have no choice, so tomorrow I'll go, and I'll pretend to be strong and brave.


Remember a while ago I mentioned my best friend's cousin Sadie? (If not, you can read the post here) Anyway, her mama has a blog that I started reading just after I found out about Sadie. I thought maybe you'd like to check out a couple of her posts that I'm lovin' right now.

http://jstarshollow.blogspot.com/2009/10/nothing-good-happens-after-midnight.html
http://jstarshollow.blogspot.com/2011/09/lies-on-monday.html

Exams and Gypsy's

I'm knee deep in midterms. It's an average occurance in the life of a high schooler, I guess, but I have to think there's a better way to test a student's knowledge on the course then to sit them down in a room, hand them a stack of papers full of questions and tell them they only have 2 and a half hours (In my case anyway) to complete this exam, and this test will make up 30% of their final grade. It's a nerve wracking experience. I'm done 2 out of 3 exams (My last one is tomorrow) and passed them both, which is great. The 2 I've already submitted, they were submitted through a program called quizstar which grades it immediatly. So I entered my answers, paced the floor, took a deep breath, put my finger on the submit button but didn't press it until I was turned away from the computer. I pressed submit, walked away, then came back. My heart was racing and I was so nervous and then... the moment of truth. I passed both exams, but the nervous feeling I experienced before I pressed submit is something I don't really like.

In other news, our house sold. Yep, we're moving again. I can go back in my blog history and find the entry in which I wrote about our coming to THIS house. But now we're moving again, at least that's how it's looking. I almost feel like somebody should start calling me a gypsy because we've moved every 2 years since I was born. Maybe that's a good thing, because for all my life I've been forced to think of home as people, not as a place.

One more thing before my study fried brain decides to shut down. Remember a while ago when I posted that video of the girl after her endoscopy? (If not, you can check it out here.) That girl has a blog called chronicles of the chronically ill, which I've been following, and loving. She takes the words right out of my mouth when it comes to describing the life of someone with a chronic illness. As most of you probably know by now, I love sharing links to posts that inspire me, make me think or just posts that I love. So if you have time, check out this post.

Finding Sunshine on a cloudy day...

Recently I discovered a blog and some videos on youtube by this wonderful woman who has chronic illnesses. She's pretty amazing, and I love hearing what she has to say because it is so true. I've really related to her and what she has to say. If you have time I encourage you to check out some of her other videos, and maybe even her blog, as they may give you an insight into the world of the chronically ill.
Here's one of the videos I watched, and loved. Fast forward to about the 1:30 mark and it goes to about 6 minute mark and see what I'm talking about. It's this girl coming out of anesthesia after her endoscopy and it reminds me so much of me after I had mine! I found it funny, but apparently I was just as bad when I came out after having mine, so that makes me a bit worried...
Enjoy!
http://www.youtube.com/user/lauranne2585#p/u/2/nzwPzekeS84

It's always darkest before the dawn...

quote love: "yes, this diagnosis is unspeakably cruel, and living with it will be a daily struggle, but as long as the good days outnumber the bad you have to live those days"

I came across this pair of videos today, and felt like I needed to share. Watch them first, then I'll explain: http://www.youtube.com/watch?v=tmlTHfVaU9o&feature=related
http://www.youtube.com/watch?v=a4LSEXsvRAI&feature=related
I opened this link expecting to find another secret's video. I was assuming it would be good, but I wasn't expecting I would cry. I was just into part 1 when the emotion began and I could feel tears building up behind my eyes. It wasn't because this story was so heartbreaking, but because it was so relatable.

I was young, if I had to guess I would probably say I was around 9. It was another round of the flu for me, and another hospital trip. I don't remember any details about that day, but I remember one thing. I remember I was in the trauma room, and there was a team of doctors and nurses above me trying frantically to get an IV in. And then there was my dad. The nurses kept asking me questions, about my name and where I was and about my family and my dog. They asked me what breed my dog was, and I said she was a golden retriever. As soon as the words came out of my mouth I knew they were wrong, but it was like I couldn't stop them, and couldn't make find a way to speak those right words. I watched helplessly as the nurses asked my dad if I was right, and he shook his head. I was in bad shape at that point, my blood sugar crashing quickly. I remember the feeling that followed, of sinking. It was almost as if I was drifting down below the water, my senses becoming clouded. It was almost like the fog came over me, and I felt peace. I remember thinking "This is it, I'm going to die." But it was like I was wrapped in a warm blanket, I was safe and warm and at peace. And I closed my eyes, and everything faded away, and I just was, being held by these invisible arms and at peace.

Do you believe in angels, in God? Do you believe that God is real, and He is close to the brokenhearted and the sick and the lost? Do you believe that you can be held in the arms of God, and that it is the best feeling in the world, and that even admist all that fear and worry and panic, peace and comfort can be found? I do.

Here's a Christmas post for you introverts!

http://sojourner-ephraim.blogspot.com/2011/12/driving-miss-daisy-ahem-paigie.html

Most of you who are reading this blog probably know that I love sharing posts that made a difference in my life, or connected with me in some way. Here's the post I want to share with you today, on this snow-less Christmas morn. It was written by my best friend's mom, about my best friend and it brought a smile to my face. I hope it will do the same with yours. So Merry Christmas, to my introverted friends who will read this today, and to my extroverted friends who are soaking up the activity and will read this later on, after Christmas has passed. (Can you guess which one I am???)
I am so thankful for each and every one of you. Wishing you a Merry Christmas, and sending my love from this place barren of snow (Aka New Bothwell Manitoba)
:)