In the Middle of it

When I read the words in the picture, something struck me and I've been sitting here for the past 10 minutes trying to figure out how to put that in to words.

In the chronically ill circles, strength is something to be admired. On a consistant basis the words, "You're so strong!" are heard from a number of different types of people. The answer that usually comes is, "Really, I'm not."
Because I'm not. I'm not that strong, I'm not that brave, I'm not that courageous.
Also, strength is a kind of a label. You become the strong one, and with that label comes the feeling like you aren't allowed to fall apart or be emotional. My life is about what is needed from me. It's about holding things together. This is my job, that's what I do. I do what needs to be done. And maybe that does make me strong and brave but it's just my job, it's what I have to deal with because I don't have another choice.

The words "Where your strengths are irrelevant" really struck me. My strength has nothing to do with how I get through the day, or how I put up with everything I do. When people tell me I'm so strong and I tell them I'm not, besides just saying that I'm just doing what needs to be done, it's kind of my way of saying my strength is irrelevant here. My strength has nothing to do with how i get through every day.
On those days when I don't want to be strong anymore, or when I quit, it's not my strength that gets me through those days. There are so many days when my strength is gone and I can't take this anymore, and it's His strength that gets me through those days.

It is in this valley of the shadow of death called chronic illness that my weaknesses are evident. I can't hold the world together, I can't hold my life together, I can't control the reactions and emotions of people around me in regards to their response to my situation. When the Glycosade Trial didn't work it was my fault, it was my body that couldn't get it right and accept the drug. (I know this isn't true but that's how I felt.) Every time my body refuses to adadpt to a new treatment, or every time they can't get an IV in or every time I am in so much pain I can barely breathe my weaknesses are glaringly evident.

But it is in these hard times I have learned to trust. I was thinking the other day maybe that's why the loss of health due to another diagnosis is so hard to deal with, because you have to learn to grieve in the storm. There's no when this is over, you deal with it in the middle of the storm. You learn to trust God in the middle of the storm. And that's pretty crazy, and really hard sometimes. There are so many times when I've wanted to say, "Ok, God! Just give me a break here and I'll trust you. Just let me catch my breath and stop for a minute and get my relationship with You back on track and we can keep going." But there is no stopping in the valley of the shadow of death; I must keep on walking.
And it is in the middle of the storm where i have found some of the most beautiful things. It is during these storms God has drawn me closer to Him.
Sometimes I take my eyes off Him and look at the winds and the waves surrounding me. They are big, and scary, and it's easy to become lost in the storm. I begin to sink, my strength not enough to sustain me and keep me from drowning.
"How many times will I have to scoop you up before you just learn to follow me?"

Here my weaknesses are evident. My strength is irrelveant.

Eyes on me, I've got you, I'm not going to let you drown.

Because when my strength isn't enough, His is always enough.

Gilead: a place of healing

It was like cancer.

Not in the literal sense of the word, obviously. Dysautonomia isn't related to cancer, or a kind of cancer. But it was like a cancer, for me. It was poisoning everything beautiful and good I once believed in. At least that's how I look at it.
I wrote something before I got diagnosed and I wrote that it was like tunnel vision, like I was obsessed with this one thing. It consumed me, and my life became about this one thing. It was like a cancer in my body, destroying me, poisoning everything good until it became only about this one thing.

A while ago I was reading this book and it was talking about casting out demons. It was the first time I really got it. It was talking about, when Jesus cast out demons in the Bible, people were no longer a slave to their insanity. While Jesus did physically heal a lot of people, somehow I don't think that's the point. I think it's about no longer being a slave to that insanity inside your head. It's about being free.
Dysautonomia isn't a form of cancer, but for me it destroyed everything good and beautiful in my life. For a long time, I guess I was a slave to the destruction and chaos that was surrounding me. I remember multiple times during my undiagnosed stage just crying out to God and wondering how much was enough? When would I finally be able to stop feeling like everything good I had was being taken away from me?

Healing isn't a one time deal, which I am still figuring out. It isn't about a one time surrender. It's about daily, hourly even, lifting our hands in surrender.
At my (Mom's friend? Former youth leader? mother of the 2 awesome girls I love to death? role model?) anyway, at her baby shower my mom was asked to give the devotional. She was talking about the passage in Exodus 17, when whenever Moses had his hands raised, his side was winning the battle, but whenever he lowered them, they began to lose. So his friends came along side him and held up his arms.
It reminded me a lot of chronic illness, and the battle that goes on every single day. Without surrender, the internal cancer wins, and everything begins to fall apart. But in that surrender, with hands raised, the demons are cast out, and I am no longer a slave to that insanity in my head.
With hands raised, He comes in like life saving chemotherapy, or radiation or a bone marrow transplant. He comes in and rescues me. When I live in complete surrender, the destruction can't pull me under.
I am being asked to walk on water. I am being asked to continually keep my hands raised, even when I'm tired, even when I'm sick and nauseated and every muscle in my body screams, even when my blood doesn't flow where it's supposed to, even when I am in so much pain I can barely breathe. Even then I am asked to surrender. Even then I am asked to say, "Not my will be done but yours."
And I can't do that alone. Over the past 2 and a half months since being diagnosed, I've had some of the most amazing, unexpected people step in to my life and help me keep my hands raised. They have loved me in to a place where I want to find healing, fought for me and with me, reminded me of who I am, but more importantly who my God is. I am so grateful for these people.

I don't know is physical healing will ever come. I don't know if there will ever be a cure for Dysautonomia, or for GSD. But as long as I keep my hands raised, I can win this battle. As long as I keep my eyes on Him and let Him cast out my demons and breathe life into my body when I have all but given up then I can be free from this internal cancer that threatens to poison everything good.
The hurt meets the healer, demons are cast out, and I am set free.
Daily, hourly, moment by moment I surrender. I look into the eyes of the only one who can really heal me, not only my sick body but also the stuff going on inside my head.
With hands raised, I surrender all I am for all He is. In surrender I find healing. In healing I find hope. And in hope, I find freedom.

  And then head spins "Where is God in this mess?" and the heart knows the answer, "Right here."
God is right here with us, and He knows
This pain is what He did for us, willing. He knows this hurt because He chose it to save us.

16

I am 16 *
I am what I am
Don't you make me to be
Anything less than the true heart of me
If sixteen is a number
Then what could it mean?
Does it limit my thoughts, my passions, my dreams?
Take me out of your box
I have no place there
I'm too wild for that
It wouldn't be fair
If you say that you know me,
Then look inside me
And ask me the questions you think I'll hide
I'm perfectly willing to open your eyes
Are you too scared to look into mine?
I'm more than a song you've forgotten how to play
I'm more than the words you can't seem to say
If sixteen is a number
Then why do you care?
Does it change who I am
Or all that I've shared?
Don't you tell me the things you want me to be
Who are you to say what you think you should see
If I am what I am
then sixteen is my age
But it's not a number that defines me today


I've spent the morning listening to birthday songs. In the secret society of the sick, birthdays are a big deal. It's another year of life! And I've made it to 16!
Here's some of the birthday songs I've been listening to this morning... a little birthday treat for you

* Adapted from Wake Up Generation by Paige Omartian

4 years

Today my body is too heavy for me.
It's been 4 years, 4 years since the night of the coma, when I went to sleep and didn't wake up the next morning.
This year feels different then every other year. Maybe it's because I got diagnosed this year, that this year we found out the diagnosis behind the condition that has been causing me pain for the past 3.5 years.
It feels like it wasn't that long ago, but it also feels like forever ago.
I feel too old for my body, like I've lived so many more years, seen so many more things than I should have.
I can't run away from the past. It follows me. I am physically tattooed, the reminder of what happened scarred into my skin - in my leg where they put the IV thing into my bone (still have no idea what that was!)
It's a weight I can't put down, these diseases that I pull along behind me like a ball and chain. It's more like they are weights packed in along side my bones. It is all inside of me. The battle I am fighting is one with my own self.

I don't know if many people know this but I am terrified of sleep. Some nights are worse then others. I used to have panic attacks. I thought they had gone away, mostly, until I had one when I was in the hospital for my glycosade trial.
Sleep terrifies me, which is kind of weird because I do a lot of it.
It's been that way ever since that day 4 years ago when I went to sleep for 4 days and almost didn't wake up.
I'm scared that I'll stop breathing, stop existing.

And so I make jokes and pretend everything is ok when really I'm sitting here at 11:30 at night afraid to go to sleep tonight.
I'm just tired of this sickness, tired of the memories of days I can only half remember, of what almost was.
It's scary, hard, makes me so grateful but also anxious. I lost myself since then, and am starting to find myself, maybe. I feel so far away from that girl and yet I am that girl.

4 years ago today...

The Greatest Thing...

So I read Eva Markvoort's blog these past few days. All of it. From when she started writing in 2006 to when she died in 2010.
I don't know why I started reading her blog, or why when I started I read through it all.
Pages and pages, so many entries written by a vibrant red headed girl.
She wrote about having CF, about her lung transplant, about rejection, about life, and love.
And I read all these entries. I read them as I was sitting in front of my computer after Taylor's memorial chat on SBW and when the pain in my stomach was so bad I thought maybe my appendix had burst.
I read them on my phone by the bathroom light as insomnia and pain kept me from sleeping.
I read them in the afternoon's, when I was too exhausted to do much and I wasn't sure why.
I finished reading them tonight...

I am amazed by this girl. Reading through her entries, she's gone some of the same places I have. I wonder, if I go there again, I could catch some of her crazy strength. I want some...

***
It was US Thanksgiving yesterday, and I've been reading posts by my US friends sharing what they're thankful for. Even though Canadian thanksgiving was a month ago, I am still so grateful.
I am thankful for love.
***
I was pondering this thought during my late night reading of Eva's blog. Eva loved, a lot, which maybe was what got me thinking about love.
I'm loved too, a lot.
These past few days I'm just feeling it. This love is giving me hope and strength and courage.
I've had so many people reminding me in this past month that I am loved. Being loved makes me happy.
I made this little collection of cards on my wall. Eva had one, which is what gave me the idea. It's my wall of love. It's filled with cards and pictures by people who love me, and little things that remind me of being loved. It's pretty small right now (a dozen or so cards) but every time I look at it it makes me smile. There's cards my parents made for me in the hospital playroom when I was little, a birthday card I got in the mail today, letters and cards my friends made for me when I had my scopes last November, a birthday card I kept from my 9th Birthday that my Grandma wrote a poem in, a big huge card everybody at my old school signed for me when I came out of my coma, a card my 2 friends from SBW sent me. There's the little string of old bravery beads I used to tell my story when I was in the hospital the beginning of this month.
They all make me feel loved. It's pretty awesome.
There's not really a point to this post, no meaningful message, just love. Maybe love is the most meaningful message of all.

The greatest thing you'll ever learn is just to love and be loved in return

Run with the Wild Horses

 

I watched this video and almost cried. I remember a time, last year, before I got diagnosed, when I would want to go riding but the thought of getting out and saddling up was enough to make me want to go crawl back into bed. If I did get out there, by the time I was saddled up all I wanted was to go back to bed, and if I did make it to going for a short ride, I came inside exhausted and in pain.
It was that winter Freedom (My horse) got sick, and I was sick, and I wondered how either of us was going to make it through that winter. I remember whispering to him one day as I hand fed him to try to help him gain weight that we were going to make it through this winter, both of us, that we were going to be fine, that we were going to make it.
By some miracle he made it through that winter, and so did I.
In early October, I went out to see him at the lease where he was being kept. After searching for a few minutes, I finally saw him, running through the pasture. The other horses being kept there began to follow him, and they all began to run, and Freedom - the horse who nobody knew if he was going to make it through the winter - was leading the herd.
I made it through that winter too. I made it through the spring when I felt like I was losing everything, the summer of knowing but not knowing, and getting diagnosed. I'm here now, I'm making it.
I made it through the winter, and spring is coming. I can feel it, feel the transition that is taking place. I'm getting ready to run.

Pancakes and Angel Wings

Today I got the news that another SBWer - Taylor - died from complications of CF.
And it sucks because even if we weren't close, she was one of us, she was part of the SBW family.
Things like this, they kind of make me go all clingy. I just want to grab everybody I love and stick them in this bubble because I don't want to lose anymore people I love.
I don't know if you ever get used to the feeling of losing somebody you knew.
So tonight I ate pancakes with my family, and I played 2 extra rounds of dutch blitz with my brother and I sent text messages to my friends telling them I love them.

Tonight I'm mourning the loss of a friend, a member of this amazing family I'm proud to be a part of called StarBright World.
Breathe Easy, Taylor. We love you!

Did you say it? I love you. I don't ever want to live without you. You changed my life. Did you say it? Make a plan. Set a goal. Work toward it. But every now and then, look around. Drink it in. 'Cause this is it. It may all be gone tomorrow

Last Night

The Hurt and the Healer

This isn't the post I was going to write. I was going to write an update on Nanowrimo (30,000 words!) or just random things going on in my life.
But I think God has a way of changing the post you want to write into the post you need to write.

I've been stuck. Since September, I've been stuck. I don't want to be stuck, and I didn't mean to get stuck, it just kind of happened. I've been stuck in pain and hurt and I don't think I really wanted to get out. Mostly because the pain I felt since being diagnosed was real and big, and it was something to hold on to. It was easier then letting go of the pain and the hurt and waiting to see what happened.

I was writing today in my Nano novel about how it kind of reminds me when I was a kid. There was this 'big' (Big in my 6 year old mind, tiny in my almost 16 year old one) grove of trees where my friends and i used to play. We would climb all over the branches and play all these great games. I remember once, my friend and I were playing we were stuck somewhere, or I was stuck and she was trying to rescue me. She cried, "Don't worry, I'll save you!" There was a flying leap, a sheer moment of panic as I watched her fly towards me, the moment right before she got to me... and then we were both on the ground, safe from whatever imaginary danger we were pretending was there that day.
 I was thinking that's kind of like my relationship with God right now. I'm stuck. I'm hanging out on a tree branch. And God's like my friend, saying, "I'll save you!" and there's this sheer panic I'm feeling as I'm certain I'm going to fall to my death, and then there's the catch, and relief when I find out we're safely on the ground.

I've been stuck for a while, and I think God's been trying to get my attention. I haven't been listening, I've been too busy clinging to that flimsy tree branch trying not to fall.
I got diagnosed and I thought I was done, and then God said, "Let's go deeper..."
Deeper? Are you kidding me?!? If I go any deeper I'll drown!
And He whispers to me like He did to Peter, "Eyes on me, I've got you, I'm not going to let you drown."
Do I trust Him? Do I trust that He's got me and that I'm not going to fall to my death if I let go of everything I've been holding on to? Do I trust that if I let go of this sack of ashes He is going to exchange it for something beautiful?
I can feel Him nudging me towards this next journey, a new version of the Valley of the Shadow of Death, whispering in my ear to let this go. It's time to let it go.
I've come too far to remain stuck in this pain and hurt.
So I have a choice to make. Do I trust Him or try to do this on my own? Do I resist and possibly drown myself in the process, or do I trust Him that He's not going to let me drown?

I want to let go. I don't want to be stuck anymore. I'm letting go

The truth about Diagnosis

So my first post was featured over at Disease On My Sleeve today.
It's really weird, seeing something I've written up on a place that's not my blog. It's weird to try and believe I actually wrote that.
But I am so excited to be a part of this project and be a regular contributor over at DS. This is something I'm really passionate about and I hope I can make a difference in the lives of people with chronic illnesses. (Plus, the team I get to work with is pretty amazing too!)

So check out my first post, and let me know what you think!
http://www.diseaseonmysleeve.org/post/35705925713/alishadiagnosis

The Small Victories

Sometimes I forget how blessed I am to have such amazing people in my life. I was reading a blog post written by my friend Courtney tonight, and she just reminded me of how there is victory not only in the big things, but in the little things too.

I've been so focused on the things I can't do, the things I've lost, all the negative things, and tonight I was just reminded of how much of what I am doing right now is a victory.

I'm eating when a few years ago they thought I never would.
I'm going to 'regular school' this year for the first time since grade 7.
I'm walking and talking and awake when I never should have been.
I've met the most amazing people because of being sick, people who continue to inspire me every single day, and are there to pick me up when I fall.

It's so easy to take the little things for granted. When life is one big battle and winning doesn't even seem possible, it's so easy to forget all these little victories, the things they said I could never do and that i am doing.

When I was at my doctor's on Friday, He told me that I could do whatever i wanted to do, that each step I'm taking is a small victory and to not let my conditions or having GSD or having Dysautonomia hold me back.

It's in the small victories where the battle is won. It's so easy to look over the things that seem so little because there is so many hard things, but these things really are victories, little battles that I keep winning day after day.
The fact that I am here is a victory, a battle I have won. The fact that I am eating is a battle I have won. The fact that I am able to go back to school this year (even part time) is another small victory.

It's not in the big things that the battle is won, but in the small victories.

I

Even if the Healing doesn't Come

I guess I should probably update everyone who doesn't already know on how the rest of the trial went. I'm home now - catching up on some much needed sleep (Seriously, I am sleeping all the time! Crazy!)
Basically the second night of the trial wasn't any better then the first. At 1:00am (ish) when they checked my blood sugar I was already low, which gave me a panic attack.
I was just really freaked out over the fact that I was low already. Obviously I was glad they hadn't let me go to the hotel for the night, and I was just really uncomfortable with the whole thing. I don't think I really slept after that.
What kind of calmed me down was just knowing that whatever happens God is still God and He still has a plan for my life.
I remembered one of my favorite verses in Romans 8: 37 where it says "No, in all these things we are more than conquerors through him who loved us."
I basically re-worded it and just said even if this trial doesn't work, I am still a conqueror because He loves me.
It was actually a really cool experience, and I just felt a sense of peace about the whole thing. I decided that I didn't want to stay and do the trial another night, I was done.
Around 6am my blood sugar went under that 'safe zone' and they had to do the IV rescue (Basically pumping me full of dextrose and then starting an IV drip to get my blood sugar back up)
When the doctor's came by in the morning I said I didn't want to do anymore, so they released me Friday morning.
And we went to the CFR that night and I got to at least fufill one thing on my goal chart by meeting a cowboy.

Coming home has been a lot harder then I thought it would be. It's really dissapointing to have this not work out. My parents are talking about maybe trying this again at home over Christmas break.
Right now I'm just trying to take one step at a time.
I'm still holding on to faith, believing God has a plan, even though the healing didn't come this time.

2 months

Hospital Update

1 night down...
For those of you who don"t know,I am currently in the hospital for a glycosade trial. Glycosade is a super starch, similar to cornstarch but longer lasting. this is basically going to replace my feeding pump for overnight.
I got here yesterday, and the trial started last night.
So I thought, while I'm here in the internet cafe of the hospital, I'd give everyone a bit of an update.
So I got here yesterday, started my IV (Had to call in the best of the best, a doctor that works with my amazing doctor, Dr.M, but we did get it first try!) and then the trial started at 10.
I was actually really nervous because there was so much that could go wrong. I still am nervous!
I have some of the best friends,though, and a few of my friends, as well as the amazing team of people I work with over at DS, sent me amazing messages of encouragement, just reminding me they are with me every step of the way and hoping for the best.
The trial started last night, and it didn't quite go as planned (But then what do I ever do that does go exactly according to plan?!?!)
I took my first dose at 10pm, which I almost threw up. They were hoping to get this dose to last 6 hours, but at 3:30am I had to take another dose (5.5 hours). The next dose should have lasted me until 9am, but it didn't do that either and at 8:00am, my blood sugar was under 4.0 (Lasted me somewhere around 4.5 hours, I think.)
Tonight they're going to try again. I met with my doctors this morning and they are going to up my dose, just to see if that will hold me longer.
Looks like it's going to be another sleepless night, with nurses coming in every half an hour to an hour. The Glycosade is administered through my G-tube now, so I don't have to drink it, which is a huge relief. I'm still pretty nervous, though, about how everything will go.
I also have my MRI tonight which I'm also kind of worried about. I'm not so worried about the MRI itself, but more the results of it- which I'll get Friday morning.
If all goes well, I should hopefully be home Saturday.

Thanks for all the prayers and thoughts coming my way. I'll post more after the MRI, this next attempt with the Glycosade trial and when I get this IV out of my hand!

Thankful, Excited, Inspired

Write 3 things you're thankful for/excited for/inspired by

I'm thankful for writing, for the ability to write my heart out. It gives me clarity, and perspective, hope. Just being creative, I guess, always brings me back to that place where i can just be still.

I'm thankful for community. I've tried thinking of something else to go here, but nothing else seems to want to fit. The community I've been thrust into, in this time period after being diagnosed, is a lot different then the one I would have picked for myself. There's a lot of people in this little community that have surprised me, and a lot of people who aren't there that I thought would be. But it turns out this little community is exactly what I need. I always used to think, "Oh, I'm losing everything!" And I guess in a way I have lost a whole lot, but I think, now, I'm not losing, I'm just slowly rebuilding.

I'm excited for the journey ahead. Even though it's been hard, I think I'm also thankful for the journey of being undiagnosed. It was worth it. When I think of the journey ahead, of life after the diagnosis, I know it will be hard, but I'm excited for it.

What's in the bag? Day 4

What's in your bag?

A view inside my bag is not something people usually see. Inside are little cornstarch splatters, something that makes me smile every time I see them. It's kind of a disorganized mess...

So, here's what's inside of my bag

* Dental Floss
* Wallet
* Gum
* Mittens
*My phone
* A water bottle (I don't know if I really go anywhere without it these days. I never used to take my water bottle anywhere, but now I always find I put it in my bag. Also, people with Dysautonomia get dehydrated easier. I don't actually know if this is really true for me, but just in case, I want to make sure I have water on hand.)
* Medical letters
* Salted Peanuts (With Dysautonomia, you're supposed to increase you salt intake. I've been noticing I'm craving more salty things anyway, but I've been using it as an excuse to add salt to my seasonings list, just in case)
* Extra G-Tube and things in case I need to change my tube when I'm out (No idea why that's still in there.)
* Emergency kit with snacks (Crackers, granola bars...)
* Cornstarch
* Glucometer
* Glucose Tabs
* Tiny stuffed Elephant
* Little pooh bear on a chain
* $4.25
* Kleenex
* empty Chemstrips container
* Batteries
*Bandaid

And a whole bunch of garbage I just dug out from the bottom of my purse (Which I just cleaned out and put in the garbage)

I don't know about this, but I'd like to...

 I don't know about this, but I'd like to...
*Go Skydiving
*Become an actual author
* Graduate
* Raise Awareness for Invisible Illnesses

Quotes and an Awareness Video

Day 2: Find a Quote and Use it as Inspiration

I've been excited for this post, and also anxious. I love quotes, but really, how do I pick just one?
There are a lot of different quotes that mean a lot of different things to me. There are a lot of quotes, too, I'm finding i don't know how to explain what they mean to me. So instead of just writing a post about one quote, I thought I'd share a few of my favorites - the ones that mean a lot to me right now.

Be Brave Enough to Break Your Own Heart

The Secret Places of My Heart are often visited by Strangers

I am a wild thing. My Nest is gone. My Sanctuary is ripped out of order.

We grow attatched to our scars. I was attached to them. Maybe I still am.

She never belonged to me, but I always belonged to her.
(This is one of those ones that doesn't make a lot of sense. When I think of it, I think of it in reference to being undiagnosed. It never belonged to me, it was never mine. And yet, I always belonged to it. make sense? Or is it just in my head that that makes sense?)

It was a strange tingling that made her think of Phantom Limb Syndrome, but this tingling was rooted much deeper. She felt like parts of her soul were missing, had left her body long ago. It happened not 3 months ago in Greece, but long before that. It was in Greece she realized these parts had left her and were not coming back.
(I know I shared this one before, but I think it really does capture a lot of how I feel. I have been asked, "Oh, well you knew it was coming, so it can't be that bad, right?" And I want to tell them the same thing, nothing left me on September 10. I knew the diagnosis was coming. It was just on September 10 I realized what was missing, and that it was never coming back)


I also saw this video, today, and wanted to share.

Maybe it will help you understand just a little bit more about what life with Dysautonomia is like...

So it begins...

In one crazy moment, I decided to sign up for National Health Blog Post Month.
Basically it's where I blog about my health every day for the month of November. I'm still trying to decide if that's crazy or not...
Given that I am lucky to brush my hair for 30 consecutive days, I'm a little worried about how this will go. I'm also going to try to do Nano again this year (Just for fun! because writing 50,000 words in one month is always just for fun!) so we'll see where this month takes me.

Day 1: Why I write about my health...
I'm finding this to already be a hard question. Why do I blog about my health? Why does it come up in my writing, here, in my novels, everywhere? And then I realize it's because being sick is such a huge part of who I am.
It's not an easy concept trying to write down why I write about my health. Why I write about it today might be different then why I write about it tomorrow, or why I started writing about it when I started this blog. I just write about my experiences, which are largely influenced by my medical conditions.
When I started blogging all those years ago, I was just going to write about my life. I think, for me, it's always been just writing about my life.
I've learned that being sick, being a patient, it can be very dis empowering. It can rob you of your voice, of feeling what you're feeling, even. It's single handedly the hardest thing I have ever done in my life. It's scary at times, usually pretty emotional. It's so easy just to lose yourself, to become a patient, to become your illness.
Every time I write (whether that be here, or in a novel, or in my journal) I'm taking back a piece of myself. Just for that minute, while I write, everything is ok. I am whole again, everything is ok, nothing else matters.
I have discovered that, through blogging, my voice about my situation can become a voice for others. It can inspire them, give words to their feelings, reach out and touch people and let them know they're not alone. I think that's the biggest reward that comes out of blogging.
This blog has helped me raise awareness for illnesses like GSD and Dysautonomia. It's helped me find my voice. Writing a blog, and reading other people's blogs, inspire me daily, not just in writing, but in living a life with chronic illness. I guess you could say they give me hope.

So there you go, that's a few of the reasons why I blog.