Sunday, September 30, 2012

Abortion and Special Needs

Something has to be said about the issue of aborting children with special needs. As someone with a genetic condition,considered special needs or disabled (a label I am only proudly embracing only for this post) I would like to speak to that.
One of the most common things I hear when the issue of aborting someone with special needs comes up is that it's more humane to end the suffering now, that it's merciful to end the suffering of a person before it begins.
Over the course of my lifetime I have met many people with special needs or disabilities. Asking many of these people if they would rather have been aborted, rather been spared the hardships they have endured as a result of being born with this condition they have, I have never once heard the answer I would have rather been aborted. I'm not saying there are some people out there who feel their life has more pain and suffering then it's worth, but I am saying for the majority of people out there with special needs or a disability of some sort life is worth it. Actually in having lived life with a disability of some kind, most of the people I've met are more aware of how precious life is, and are less likely to take it for granted. Also, what about the people out there who have changed the world as a result of being disabled or handicapped? Shouldn't we, as handicapped and disabled people, be allowed the chance to try for something great? And yes, I do believe that there is a point when the bad days out number the good and there comes a time we wonder if life is worth it, but shouldn't each individual get to decide for themselves when living isn't worth the price anymore?
When we abort children with special needs we are basing it on one trait. Having Glycogen Storage Disease is only a small part of who I am. I also have blond hair, and love to write. And what's to say that when we draw the line on who can and can't be born that we'll find a test and decide abortion is the best route for kids who don't have a high enough IQ to get int Harvard, or aren't born with blonde hair and blue eyes? There's already gender selective abortion, and abortion for those with serious medical conditions. The message we are sending to the world is that if you aren't born 'perfect', or 'normal',  there's no room for you here.
Another thing I hear is that parents won't have what it takes to raise a child with special needs, so then it is kinder to choose abortion rather then have the child be bounced around in foster homes. I have a few things I would like to say to that. First is that what I find is that we as a society try and find a way to estinquish pain and suffering as quickly as possible. There are drugs for labor, headaches, colds and surgery. We try to medicate heart ache and grief. But I have seen great value in suffering and beauty come out of pain. Some of the greatest lessons I've been taught is in times of pain and suffering. There is something great and valuable that comes out of suffering.
Also, there are many families out there waiting to adopt a child who just might have special needs. They have so much love to give, they want this child. Isn't that a much kinder option then choosing abortion?
I know my parents have gone through much in order to raise me. It hasn't been easy on my parents raising a child who requires multiple hospital visits per year, who requires expensive drugs to sustain life, but I am so grateful they did choose life for me. I am their child, and I have heard many times that if I had been born healthy I wouldn't be their Alisha, the child they have loved since the moment they found out my mom was pregnant.
If you were to ask me now if I am grateful for the life I have been given I would tell you 100% yes. And if you were to ask me if I could go back and change everything, if I could have been born healthy and not have gone through everything I have gone through, I would tell you I wouldn't change a thing. While it has been hard and painful and challenging I have learned so much, met so many amazing people and got to experience things I wouldn't have gotten to otherwise.
I am so grateful for the life I've been given, for the parents who have loved me, believed in me and raised me to believe I can do anything I set my mind to, and that being sick isn't a disability or a handicap. I'm just me, unique, special and loved. I have a heart full of love to give, inspiration to share and a story to tell. I have blond hair, love to write, have a passion for life and... oh yeah, I just happen to be a little different then you.

God doesn't make mistakes, He only makes miracles.

Wednesday, September 26, 2012

The Kids from Phsyics 20

Do you remember in kindergarten, how you'd meet a kid, and know nothing about them, then 10 seconds later you'd be playing like you were best friends, because you didn't have to be anyone but yourself?

Even in the midst of everything going on around me, sometimes there are those little moments, those little blessings that make you stop and your breath catches in your throat and you just want to pause life and stay in this moment forever, because in that moment everything is ok.
There was a moment like that today, a moment that made me realize that sometimes the best medicine you can get comes from people who don't even know you're hurting.

Today was the physics practice test. Since it was a beautiful day, our teacher said we could write the tests outside. There we were, all 6 of us students crammed around the little blue table, while our teacher stretched out over at the red table. I thought it was kind of funny, all 6 of us sitting so close together we couldn't even open our binders without hitting somebody, so close that the tops of our papers brushed each others.
So we worked, and random comments were thrown in, comments about the little kids playing over on the playground, stories from when we were growing up, stuff like that.
One by one we finished our tests, and soon we were all just sitting around that tiny blue table, talking and laughing.
I didn't want to go to school today. But the funny thing was, today turned out to be exactly what I needed. 6 of us squished around a little table, laughing and smiling so much my face hurts.
These people know very little about me. I see them once a day for an hour and a half, the majority of that time spent not talking. And yet we all are connected, because we all show up in that classroom day after day and learn physics that we'll probably never use in real life. And then we go home, and we have an unspoken agreement that we'll do it again tomorrow.
I like my little physics class. I like the people there, the people that can make me laugh when I don't feel like smiling, people who make going to physics class once a day a little more bearable.
I guess they're right when they say laughter is the best medicine, and that the things you need can come from the most unexpected places.

Tuesday, September 25, 2012

Strength Part 1

Over the past few days, I've been comparing losses.
Tonight, as I was writing in my journal, I was letting words roll of my tongue and capturing the way they tasted as they left my lips.
Last night, after reading something in a book - that the names of the people you love sound safe inside your mouth - I proceeded to whisper the names of everyone I loved, as well as people I didn't know that well, to see if there was a difference. I smiled over the fact that there was.
Today my words were a little different. After realizing that, when naming things we consider tragedies like the loss of a loved one, they all had the same sort of ring on my tongue, I went on to whisper the words, "Diagnosis."
I whispered them in an empty room, wondering if they would sound any different then "Death," and "Loss," two words we associate with grief.
To my ears, they sounded the same, the same sort of ring to them. These words are the kind you whisper in the quiet of night, as if whispering them makes you a little more immune to death, to loss, to diagnosis', things that change your world forever. Like maybe if you whisper them under the cover of darkness death won't know where you live and come steal your children, your spouse, your sibling, your parent, maybe sickness won't come knocking at your door and rob you of the simple gift of just feeling human.
"You're so strong," it's something I've heard many many times over the years, and while I appreciate people who mean well telling me that they admire the courage and bravery I somehow seem to have magically possessed, it always makes me wonder (And sometimes bite my tongue, thinking, "You could have my strength if i could have your healthy.")
Strength, it seems, is categorized by silence and stoicism.
"You are so strong, I could never handle that."
Ah, but you could. If it happened to you, if the unthinkable happened to you, you could. I wonder if, when people see my strength, they see the ability to do what needs to be done and to look decent when I feel like crap and to carry on a conversation. Maybe that's why I think strength, right now, is marked by silence and stoicism.
I agree, I do do the things the need to be done, but only because I have no other choice. If I let what I'm feeling come out and  let my heart break at the doctor's office or in class or on your couch, would you think I'm strong then? If you *really* saw the extent of my emotion, would I be considered strong... or crazy?

Monday, September 24, 2012

The Strong One

I found this right around the time I got diagnosed. I remember reading it, and thinking how true it is, or how true it feels. Maybe it's not true, but it sure feels that way from where I'm standing. I've just been thinking a lot lately, about stuff I don't have totally sorted out right now, and that I don't have time to sort out right now because i have to leave for class.

We tell people they are “strong” when we are uncomfortable with their pain and would prefer that they shut up and not bother us with it. To say “but you are strong” is telling someone “I don’t think you should feel that way,” and it’s not a compliment. I don’t think that strength means being invulnerable, or pretending that you are. The belief that silence and stoicism are inherently good qualities is how you end up dressed up like a bat punching criminals in an alley – it’s not a good road to emotional health.
Be sad. Be angry. Let your heart break – in the diner, on someone’s futon, in the park, on the way to the zoo, at brunch, over drinks, in the therapist’s office, on the bus – Wherever it breaks, let it break all the way open, let it run out and down and spread out in a soggy puddle at your feet. Say, “I’m sorry, I can’t listen to you today, my heart is broken. Will you sit with me a while and I’ll tell you about it?“

Say, “I can’t take care of you today, but you can take care of me, and maybe tomorrow I will take care of you, and we can trade off like that for a while, okay?”

Say, “I love you, and I love that you think I’m strong, but I don’t feel like being strong today. I feel like being angry and crazy and sad. Can we go to the movies or just sit here quietly or take a walk or talk about it or not talk about it?“
Your friends may get scared when you do this. If you, the “strong” one can break, what does that say about them? That’s why they push back at you and try to remind you of your strength, when what you need is for them to stand by you in your pain and weakness. They don’t have to solve that pain, they just have to bear witness to it. Maybe they don’t know how – a lot of people don’t know what to do in the face of other people’s pain. They want to fix everything, and if they can’t fix it they feel inadequate. As the “strong” one you can help them out with this by saying “You don’t have to fix it. You don’t have to do anything. Just be with me, and listen, and love me, and I’ll love you back. That’s all I need – to know that you love me, even when I’m sad and scared and don’t know what to do next

Sunday, September 23, 2012

Deliverance is hard

I was reading through old notebook pages and blog posts today. I looked back over the things I'd written since last July, since the doctor's appointment where I felt I was being led into a time of waiting, preparation for a time such as this.
I remember then knowing the answers would come soon but not knowing quite when. I remember the peace that passed all understanding that wrapped itself around me. I remember the quiet, still voice whispering, "This is the last part of the journey, you're almost there."
I remember being excited, and nervous and I was freaking out and anxious, but I was peaceful. I remember thinking of my entire undiagnosed period as walking through the wilderness and soon deliverance was coming.
Until today I barely remembered how everything started, the day I found out, the day He said no.
I'd almost forgotten the absolute faith I'd had back then. I'd almost forgotten that those were the days when my journey began - July 10. I was diagnosed on September 10. My waiting vigil lasted exactly 2 months.
So much has changed in those 2 months.
Looking back over things I had written, I think I knew the pain that was coming. I think I had an inkling of an idea how hard things would be for me when the diagnosis finally came.
Deliverance turned out to be hard. It's turning out to be harder then I ever imagined. It's grief and it's intense and crazy and scary and lonely and overwhelming.
It's hard to describe exactly what I'm feeling. This grief is mixed with different flavors and textures, and I think I'm only now starting to realize that.
It's been almost 2 weeks and there are still moments when the enormity of the loss I have suffered is enough to make me fall over and want to cry and scream and beg to just be ok again. I find it kind of funny that now I would do anything to be ok again. I would cut off my arm if I could just be healthy. It's not even that I'm feeling really sick right now, it's just knowing I will never feel really ok again.
I lost the girl I was supposed to be. I know that's crazy, and that I am supposed to be here, but it feels that way. It feels like all the dreams I had for myself, all the hope I had for being completely healed, it's all gone.
This loss is as high as Mt. Everest, as wide as the Pacific Ocean, as deep as the Grand Canyon and is taking on the apperance of a grave.
I know miracles can still happen, and I know God is going to work great things out of this time in my life, but I also know losing everything I did the day the diagnosis was final is something earth shattering for me, and my world will never be the same.
I think that's one thing I want people to know about getting diagnosed - because it was something I didn't even fully understand until it happened to me. Getting diagnosed with a chronic, and sometimes debilitating, illness, it changes your entire world. The loss, it's impacted me as strongly as the death of someone I care about. But this time nobody died, no real person anyway.
I also feel the need to stick up my hand and go, "But don't worry, I'll be ok." And that is the truth. Someday, I'll be ok. I won't be the same kind of ok I was before, but I'll be ok in some sense of the word. I feel the need to say, "Don't worry about me. Seriously, don't let me cause any trouble for you. I'm not crazy, just... you know, grieving." I'm not ok right now, but I know I am going to be. Someday the wound is going to be closed, and I am going to hurt a little less, and it's going to be fine. Maybe I keep saying that for my own sake, to keep reminding myself that someday things are going to get better, or maybe it's because somewhere deep inside I know it's true.
Just... deliverance is turning out to be a lot harder then I thought it would be. There is more sadness and pain and the hugeness of this loss is more then I ever thought it would be.
I feel like I keep trying to justify myself here, to justify what I'm feeling. (Been doing that a lot lately...) So I'm just going to say right now I'm not ok, and I'm grieving over this really big and real loss, and that's ok. Like my friend said in an email, as long as I realize that I am going to be ok. There is no shortcut to this grieving process, and it's something you just have to do. The only way to get through it is to feel every heart breaking, gut wrenching moment of it.

Thursday, September 20, 2012

Right where I'm at ~ 10 days

It's been 10 days since I was diagnosed. Does that seem crazy to anyone but me?
It's been 10 days since I was given the diagnosis I've been waiting for for years. It's the diagnosis that had the power to change everything for me, the one I dreaded as much as I anticipated it. It felt like a foolish dream, just out of my grasp, a little silly to imagine the day.
But, looking back, it wasn't the day that changed my life forever, it's the days that have followed. It is the days I am currently wading through.
It's been 10 days, and I'm not ok yet. I know I will be, someday, when I get over the shock and figure out how to move on with my life. I'll be ok, once I get over how overwhelming this all is, and once I figure out how to pick myself up and continue on with life.
I was walking along today, and a random thought came into my mind, the thought of, "I don't like September." But I do. I love September. I love fall, and the changing leaves, and sweater weather. I love September because it holds my best friend's birthday, and because this time this year there have been babies being born. It's just that now September holds one of those days for me, one of those days I know has changed my life forever.
I was talking with some friends today about how completely overwhelming and strange it is to actually be diagnosed. I can't remember the first time I was diagnosed, and I only remember the waiting to get diagnosed. It's strange, because I never expected it to be like it is. I thought I would be relieved, and I would be able to move on with my life like nothing ever happened. I thought that since I expected it, waited for it, longed for it, that maybe it wouldn't be so hard. Maybe it wouldn't rock my world quite this much. Maybe I wouldn't need a moment to stop and catch my breath.
But it's there, this quiet ache that refuses to be silenced.
I feel incapable of talking about what I'm feeling, but also incapable of talking about anything but this tiny thing that has changed my world so completely.
So, in my state of being unable to articulate how I'm feeling, I'll whisper these words: I'm not ok yet, but I'll get there. I don't have it all figured out yet, but it's coming. What I thought would just be the chance to move on turns out to have changed my life. I'm just learning how to live again.

So this is where I am today, 10 days after my diagnosis.

Wednesday, September 19, 2012

The Purple Heart

Today was blood work day.
While most teenagers my age were checking into school, sitting through lectures and doing questions, I was on my way to the lab.
Most of the time I'm ok with this life, ok with having to miss school to go to the lab (Ok, I'm totally ok with the missing school part, just not sure about the lab part.)
While most teenagers my age were having conversations with friends and teachers, I was talking with my favorite lab techs.
I'm ok with that too, ok with the fact that I now know lab techs at that hospital better then I know the teachers at my school.
I was cold, so they wrapped me up in warm blankets. They tried different needles, different arms, different veins. 7 pokes later, the finally got blood, from a vein in my left hand.
Currently I'm sporting 3 Barbie Band-aids, one on each arm and one on my hand. In less then an hour I'm going to class, with other, normal teenagers who didn't spent the morning getting poked with needles and catching up with those lab techs you (usually) only see once every 3 months.
This is my life. It's mine, and today it's good. Today instead of making me feel different, it makes me feel special. It makes me feel like I have this secret and it's bubbling up inside of me.
Days like this are the ones I want to hold on to. These are the good days, the days when my 2 worlds seem to blend seamlessly, when I feel special instead of sick. These are the good days, and I want to hold on to them as long as I can.
I wear my band aids like a purple heart, something I am proud of more then I am ashamed of it.

 "Nobody goes into battle wanting to win a purple heart. You do the right thing, and sometimes it gets you a medal and sometimes it gets you killed"

Sunday, September 16, 2012

Seeing Miracles

Today is the last day of Invisible Illness Awareness Week. Tomorrow it will be one week since I got diagnosed.
Today I want to write about miracles.
I think, for me especially, I forget about miracles when I'm thinking about my illnesses. I think about how hard it is, and occasionally about the things I've learned, but how often do I stop and think about miracles?
This morning, I was holding my friend's newborn daughter, and she reminded me about miracles. She reminded me, with her tiny tiny fingers and her ten tiny toes and her eyes that watched me as I held her, that miracles happen. With her life, she reminded me that miracles are out there. She reminded me that I am a miracle myself.
When I went into my coma, and came out alive, it was a miracle. Everyone told me it was a miracle. There were people praying for me around the clock, I woke up, I had seen heaven and angels and come back to earth.
And then, when everything began to happen and I first began experiencing symptoms we would later find out was part of the Dysautonomia, I became angry. I told God if this was my miracle, if this was what I was going to get, if I came out of this coma and survived only to pretty much go through hell on earth I didn't want it.
I hear stories of kids who somehow pulled through, and came out fine, and are fine. And I got sick. And yet, that doesn't make me any less of a miracle. Even though my brain was injured, and I ended up with another chronic illness, it doesn't mean God was any less faithful.
I am alive, and that is a miracle.
I know of so many children who were sick, and their families prayed, and people prayed, and still these kids didn't make it. And it's not because God was any less faithful. It was a miracle that they were here at all, that they lived, that they fought and defied the odds, and then they went.
My life is a miracle. Your life is a miracle. Every life, no matter how short or long, is a miracle.
Today, I remembered that life is a miracle. I believe miracles still happen, even though sick children still die and miraculously healed kids end up sick. I believe miracles still happen, and I even saw one today, as I held baby S in my arms.
I know God has a plan far bigger then my own, and that He will use this unexpected sickness to bring Him glory. He will use death and loss and sickness to bring glory to His name.

This week, one thing I hope you saw was that miracles do happen. Every life is a miracle, every life a gift, every life precious. More then I hope for awareness and a cure, I hope this week was about seeing miracles.

Saturday, September 15, 2012

Embracing the Inner Sexy Sick Girl

For Invisible Illness Awareness Week, I had great plans. I was going to blog every single day of the week, I was going to raise awareness for invsible illnesses, not just my own. I was going to do it all...
And then I got diagnosed, which added a whole new level to the emotional/physical/mental stress I was dealing with, and then I managed to catch a cold.

Being diagnosed with a chronic illness changes your life. I never expected it to change mine so much. I've been sick forever, I'm prepared for this, getting diagnosed is going to be more of a relief then a burden for me. I didn't know how wrong I was.
I do agree that, yes, since I was sick before, I think the diagnosis is easier for me. I know a friend who's little boy is being tested for diabetes. He's never been sick before, he isn't already introduced to needle pokes and doctor's visits. In this way, I think I have a leg up, as I was already introduced to needle pokes and doctors and tests.
But in many other ways, I never expected my life to change like it did (Which also means I never expected to feel the way I do.)
I feel consumed by the medical world. I feel like while my friends have been turning in papers for classes and working jobs, I have been on the phone with doctors, researching new treatment plans, and trying to stay afloat with all the emotions that come along with it, struggling just to keep my head above water. I feel like I don't belong with them anymore, simply because I'm not the same girl anymore.
My life is in two sections now: Living my life to the fullest despite being sick, and raising awareness for chronic illnesses like mine and embracing the sick side of me. (I was actually talking to my friend the other day, and when I told her I was going to have to start taking cornstarch in class, the conversation was something along the lines of: "You're going to have to start embracing your inner sexy sick girl.")
Embracing my inner sexy sick girl is something I find hard to do. I either lean too far towards living a normal life, so far that I fall right out the door, and end up doing all those things I know I shouldn't do and paying for it later. Either that or I lean so far into being sick that I throw a pity party, and complain A LOT.
I remember when we were in Vegas, one guy said to me, "You can either live your life or live your disease," And I'm still trying to figure out what that means. How do I live my life and not let myself go off the deep end and ignore the things I need to do for my health? How do I manage my conditions and still manage to have a life?
I wish I had the answers to all these questions, but I haven't quite figured that out yet. One day soon, I hope, I will figure out this ideal balance, how to embrace who I am as a person and my inner sexy sick girl.

Friday, September 14, 2012

The Lucky Ones

He said "Someday I hope you get the chance to live like you were dying."

We were in Vegas. I think it was the last day of the convention. I was skipping back to my room, high on being around my people, and I remember having this thought: "I feel sorry for people who aren't sick."
I remember, in that one moment, for a wild moment in time, I thought of myself as incredibly blessed. That whole weekend was a time when I thought of myself as the luckiest girl in the world.
I remember thinking that I was sorry for everybody out there who's 'normal.'
I was sorry for them, that maybe they didn't have so many people behind them, pushing them towards excellence, telling them they could dare to dream big, and that anything was possible.
I was sorry for them in that they didn't get all the big 'sick kid perks' that us sick kids get. You know, things like VIP tickets to concerts and meet and greets with celebs and being on TV and in newspapers.
And I felt sorry for them because I hear of so many people just letting life pass them by, and waiting. So I was sorry for them because they don't know what it's like to live every day like you're dying. Maybe they don't realize that life is a gift, and even though you might be having a bad day every day that you are living and breathing is a good day.

Sure, being sick hasn't been a walk in the park for me. It's this huge pain in the butt, and I've been stabbed and cut in to and had more then my fair share of bad medical reports, and I've fought like crazy to stay alive. But for that one weekend, I thought of myself as blessed. I thought of being sick as one of the best things that could have ever happened to me.
And for a minute - during my days of thinking of myself as lucky - I had one small thought, one small twinge of guilt... and I felt guilty because I get to experience all this, and there's 'normal' people out there, who just let life pass them by, and who take life for granted.
Me, I'm one of the lucky ones. I have a team of amazing people behind me, people who have fought this awful disease, or who have watched a loved one fight it, and who want to find a cure. I have gotten to do some of the coolest things that no normal kid gets to do. I have people behind me every step of the way as I pursue my dreams, pushing me on, telling me that I can't let something like being sick stop me from doing anything I want to do.
The night after the confrence ended, with voices ringing in my ears that I could do anything, I rode a mechanical bull and crossed an item off my bucket list.
I don't know, I just feel lucky. I feel so grateful for my illness that, yeah, sometimes I hate. And I wish everyone got to experience everything I felt that weekend.
It's not me I feel sorry for, or kids like me who fight day in and day out with some kind of illness. Maybe, just maybe, we might be the lucky ones.

Thursday, September 13, 2012

From the Ground

This week is Invisible Illness Awareness Week. It is also the week I got diagnosed. It is also the week I began learning how to live all over again.
Over the past couple of days, I've been researching. I've researched my illnesses, and read inspirational stories of other people who go through the same battles every single day. One thing I watched, in a video blog, said this, "We all want to make a reason for this."
And I realized that was true. For both of my illnesses, I want to make a reason.
So much has gone on this week it's hard to believe it was even just a few days ago. I got diagnosed, after 3 years of waiting. I was forced to learn how to live again.
That's one of the things I didn't expect. I'd been sick for so long, I was already learning how to adjust, and I didn't think that getting a diagnosis would be that different.
It was.
It is learning to live all over again. It is finally having a label, and knowing that it is a part of me now. Before I could live in the maybe's... "Maybe it's not real, maybe it is all in my head, maybe I am crazy, maybe it's just the flu or something and it will pass, maybe it's mono, maybe..." And now I don't have that anymore. Now it is yes, the cold hard truth.
My life has changed already in ways I can't explain. For the most part I would like to say I'm doing ok, I think I'm doing ok. I'm doing the best I can with what I have been given, let's say that.
I think I've mostly been living in, "I need to make a reason for this."
So I've been throwing myself into raising awareness for both GSD and Dysautonomia (Don't get me wrong, I absolutely love raising awareness for these conditions.)
But at night there's nothing to distract you. There's no blog posts to write, no other bloggers blogs to check out, no school work that needs to be done. It's silent, and that's when I realize how much my life has changed.
That's when I lay in bed and can't sleep and just shake because I am overwhelmed by all these emotions rushing at me.
That's when I hear His voice, asking me what I am going to do. Am I going to be like Job, and praise Him from the ground where I have fallen? Am I going to trust Him, both when He gives and when He takes away? When I am learning how to live again, when I am forced to re-learn who I am and there's no hiding from the truth, is He enough for me?
At night, these questions peck at my mind.
I am going to make it through this. I want to praise Him from the ground, to lift my hands in worship when I can't even lift my body up off the bed. I want to say He is enough, even when everything I have has been stripped away from me. He is enough.

Wednesday, September 12, 2012

Yellow Wiggle Syndrome (More on Dysautonomia)

I stumbled across this article written by Greg Page (Aka the yellow wiggle.) He was diagnosed with Dysautonomia, and his goal is to raise awareness for this invisible illness. His story was something I could immediatly relate with, and the message he has to share is one I think most people with an invisible illness (Or a few!) want to share, and that is to use your voice, to be a face behind the disease, and to just raise awareness so that one day there can be better treatment options, or even a cure.
(Also, if you're interested, this website has a lot of information about dysautonomia in youth especially, with sections for friends or teachers)

Dysautonomia is something I have been dealing with for 3 years. And though I was only diagnosed a few short days ago, I've known for months. For months I have been fighting to get into a doctor, to go see a specialist, to get this test ordered. And now it's over... That really is kind of wierd for me.

During this week, I want to raise awareness, not only for Dysautonomia, but also for Glycogen Storage Disease.
Both Conditions have impacted my life so greatly and have changed who I am forever. To be able to raise awareness for both the conditions that have changed my life is something I can do.
I want to give all Invisible Illnesses a voice, and to stand up and use mine. I want to be a face behind the disease. I'm a real patient, a real human being, with real stories of how these conditions have changed my life.
Stand up, be proud of who you are, and do what you can to use your voice and make a difference in the lives of people like me.

Tuesday, September 11, 2012

Invisibile Illness Awareness...

1. The illness I live with is: Glycogen Storage Disease (GSD) type 1A, Dysautonomia
2. I was diagnosed with it in the year: GSD when I was 4 months old, and Dysautonomia when I was 15
3. But I had symptoms since: 3 years ago
4. The biggest adjustment I’ve had to make is: Accepting that I can't do it all! It's always been a tug of war, in both cases, of wanting to do everything and live a normal life and live in denial, and also to make sure I get what I need and take care of myself.
5. Most people assume: I'm fine.
6. The hardest part about mornings are: Since I changed my diet (Gluten free!) I am having more energy, which makes getting up in the mornings not that bad, but it used to be awful!
7. My favorite medical TV show is: Grey's Anatomy! With Private Practice coming in at a close second. So glad those are going to be starting up again soon. This summer I think I watched about 4 seasons on DVD...
8. A gadget I couldn’t live without is: Currently my pump (literally) and figuratively, my laptop
9. The hardest part about nights are: Being hooked up. I've grown so used to it now I don't know what I would do without it, but on those nights when it decides to be picky and beep at every little thing, I hate those nights.
10. Each day I take _2_ pills ; vitamins. (Also Cornstarch drinks 5 times a day)
11. Regarding alternative treatments I: would be willing to try them. Haven't as of yet, I don't think, but I'm not going to say never!
12. If I had to choose between an invisible illness or visible I would choose: I think there are perks of both. I actually had this conversation yesterday, how when you see someone in a wheelchair or whatever you know something is wrong, but then you see someone at me, and I look fine, so sometimes people look at me funny if they see me doing something that I have to do (Like eat in random places. which as apparently my friends, and my mother's friends now know is something I try to avoid doing in church) Some days I think I would like a visible illness, but then also an invisible illness is easier to hide. Can't I have the best of both worlds?
13. Regarding working and career: Now, since I know I have people out there who would kick my butt if I said I couldn't do anything because I have GSD, I am back to considering a career in medicine. Thanks to Dr. Kushnani and her team at Duke I may actually have a chance to go and practice that real soon! But yeah, currently I am a student, and a writer, but I would love to be a doctor one day.
14. People would be surprised to know: I don't handle it as well as people think I do. I do try to keep my sick life and my normal life separate, though that really isn't working well for me right now. I don't let a lot of people in, and let them see into my real world.
15. The hardest thing to accept about my new reality has been: Well I've been sick for forever, so I never really thought it would be that hard, but this dysautonomia, which has just recently actually been diagnosed, has been harder to deal with then I originally expected. I never imagined there was so much I just didn't feel like doing (Not because I was really lazy, just because I was tired, or didn't feel right) also, I never expected the emotionally side that would come with being undiagnosed. Dealing with the emotional side effects has been harder then I ever imagined.
16. Something I never thought I could do with my illness that I did was: Complete a 5K. I think that's probably the biggest, and most recent.
17. The commercials about my illness: There are none, we are that special! 1 in 100,000!
18. Something I really miss doing since I was diagnosed is: I missed having a social life. I still do see my friends a lot, but I remember before i made the diet change how I would just feel sick every single day, and most days I wouldn't make it to youth group, or a spa party with a friend. I've really had to pick and choose what I want to participate in. I'm getting better at it now, though (Both the picking and the choosing and the seeing people)
19. It was really hard to have to give up: Currently... Everything I thought I had, and this idea of normalcy I was clinging to (also intermingled with denial) Accepting that i have to let go of control. I'm not very good at giving up control.
20. A new hobby I have taken up since my diagnosis is: Can I say writing? I've written forever, but without my illnesses I would have no stories, so writing is definatly something that has come out of my illness.
21. If I could have one day of feeling normal again I would: Go for a run, spend the night out with my friends (All night). I would want to do everything.
22. My illness has taught me: Never to take anything for granted, to live each day fully, to never stop fighting and to never give up hope.
23. Want to know a secret? One thing people say that gets under my skin is: "Well you look fine!"
24. But I love it when people: Are in it with me. This looks different for every single person in my life, but it just consists of being there when I need somebody, letting me cry when it's too much, rejoicing with me when I'm happy, just wanting to be in this illness with me and fight it with me. Also, hugs are good :)
25. My favorite motto, scripture, quote that gets me through tough times is: I have a lot, and depending on the season i am in the quote i like changes. Right now it's: "Have some fire, be unstoppable. Be a force of nature. Be better then anyone here and don't care what anyone thinks. There are no teams here, no buddies. You're on your own. Be on your own."
26. When someone is diagnosed I’d like to tell them: You will make it through this. It will hurt like crazy, and you'll think you're going to die, but you can survive anything. You can do this!
27. Something that has surprised me about living with an illness is: The amazing people who also live with chronic illnesses that come around you and support you. I've met so many wonderful people, and their support for me amazes me daily. I can't imagine what it would be like to live without a chronic illness now, and I actually feel sorry for people who don't have the support behind them, pushing them, whispering in their ear, "You can do anything. Don't stop, don't let your illness win, come out victorious."
28. The nicest thing someone did for me when I wasn’t feeling well was: I had to think for a minute here. The one that sticks out to me was when I went to a movie with my friends. It was super late, I wasn't feeling well, I was tired. I told one of my friends who was sitting beside me to make sure I didn't fall asleep during the movie. About half way through the movie my friend leaned over and said, "You ok?" It's the little things like that that stick out in my memory, those tiny glimpses that if I blink in the wrong second I could miss.
29. I’m involved with Invisible Awareness Week because: I want to raise awareness for these conditions like mine, where people don't know about them. GSD, and also Dysautonomia, are some of those conditions where a lot of people don't know, even doctors. I want to use my voice to tell people, to educate them and to inspire.
30. The fact that you read this list makes me feel: More educated, more aware of what people with chronic illnesses live like. Maybe even a little bit inspired.

Monday, September 10, 2012

The Diagnosis

They take pictures of mountain climbers at the top of a mountain. They’re smiling, ecstatic, triumphant. They don’t take pictures along the way cause who wants to remember the rest of it? We push ourselves because we have to, not because we like it. The relentless climb, the pain and anguish of taking it to the next level. Nobody takes pictures of that. Nobody wants to remember. We just want to remember the view from the top. The breathtaking moment at the edge of the world. That’s what keeps us climbing. And it’s worth the pain. That’s the crazy part. It’s worth anything.

This week is Invisible Illness Awareness week, and this year I was going to be ready. There is a little pile of posts in my draft box, just waiting for this week to come around. But you see, I'm going to have to postpone my little Invisible Illness Awareness series, just for today.
Something happened today in that little doctor's office on a little street in Edmonton. I got the news I have been waiting for for three years. Today I got a diagnosis.

Last night, I met up with my friend Crystal for supper. We had an amazing time, and it felt wonderful to finally put a face to the name and meet this wonderful woman whom I had been emailing almost every week for the past little while.
And this morning we went to that little doctor's office on that little street. This doctor, he's something special. He is truely amazing, and I am so grateful to have ended up in his office. We talked with a nurse for about 45 minutes, going over my history and what not, and - after showering in the sinks - we saw the doctor. Within a few minutes of seeing us, he asked, "Do you want to know what's wrong with you?"
Could someone really tell me that? Could there really be someone who could tell me this thing which I have been waiting 3 years to hear? Hope gripped my heart.
He confirmed the diagnosis we have been suspecting... dysautonomia.

Today is my day. Today is the day I was given the diagnosis I have been waiting for for years. Today is the day when I finally close the chapter on the un-diagnosed section of my life, and open up another one.
I am so grateful to everyone who has walked this journey with me - through praying for me, and sending me encouraging messages, and standing by me through every medical test and doctor's appointment.
I am ready to open this next chapter of my life. I feel like I have reached the top of one mountain, and there are still so many more adventures out there waiting for me. I am excited about what the future will hold for me, and where this journey of life will take me.

Friday, September 7, 2012

Part of Me

Blogging is something I feel like i haven't done in a while. I know I have, that it wasn't that long ago since I wrote my last blog post. But I feel like i haven't been honest and blogged about my real life for a long time.
For a while now, I feel like I've written about my surface level life. It's the life most people see, or the part of my life I let most people see.

On Sunday, I'm going to Edmonton to go see a doctor again who will try to figure out what is wrong with me. On Sunday night I'm going to have dinner with my friend Crystal (!!!) and then on Monday morning I'll head to the doctor's office.
Today, I got my schedule, my cornstarch schedule that is. 5 times a day starting tomorrow I am going to be drinking (Or pushing through my G-tube, we'll see) cornstarch.
And when I think about why I haven't told people, all I can think of is I don't know. I don't know why I'm avoiding telling people, like it's something I have to hide.
I remember at the GSD convention, how everyone was like that, and how it was normal, and for the first time in my life I actually had a sense of being home, even before I met anyone.
I remember, as the teens and adults sat around in a circle together and talked and shared stories, one of the guys was talking and looked at me and said, "You can either live your life, or you can live your disease."
And for the first time it hit me. Ever since I started eating, I've been trying to live my life. That's why I stopped cornstarch the first time. And the things changed, and now when I look back over where I've been for the past few years I realize what I thought was going to let me get my life back only made me lose it, and become immersed in my disease.
That convention was an "Ah ha" moment for me. It was the first time in as far back as I can remember that i actually felt like being sick was this huge blessing in my life, instead of this huge burden and this thing I'm trying to hide. It was the first time I ever realized that instead of living my life, the way I imagined it would be when I was 12 and determined to deny that I'm sick, I had began living my disease.
I don't want to hide it anymore, hide being sick, because it is such a huge part of who I am. And yeah, sometimes it's this big pain in the butt, but it's also what's given me the most hidden blessings, and made me stronger then I ever could have been had I not been sick.
So yeah, I'm going to the doctor on Monday, and yeah, I'm starting cornstarch again. Admitting that doesn't make me weak, it makes me strong. It's acknowledging this huge part of me, and it's being comfortable in my own skin. No matter what happens, what has happened is something no one can take away from me, and I am proud of who I am, and of all I've overcome.

This is the part of me that you're never gonna ever take away from me.Throw your sticks and stones, Throw your bombs and your blowsBut you're not gonna break my soul. Now look at me, I'm sparkling, A firework, a dancing flame, You won't ever put me out again I'm glowing, oh woah oh

Tuesday, September 4, 2012

My first day

Today was the first day of school.
I actually thought I would miss summer more, that it would be harder to transition into being back at school, and back in an actual classroom, but it wasn't that bad.
This morning I started out with my online courses. It was mostly just set up today, meeting my teachers (All I think will be wonderful at the subjects they are teaching) and making sure you have everything and setting up the technical side of things. I am super excited about some of the classes I'll be getting to take this semester (Photography, here i come!) and some of the units we'll be covering in certain classes (Biology units about the circulatory system, the heart and enzymes in the body, yay!)
And then, this afternoon, I went to actual school. I went about a half hour early just so one of the teachers could show me around, introduce me to my teacher, show me where my class was and help me get my text books. The teacher that showed me around was actually my brother and sister's teacher last year, and she was so great. She told me the door to her office is always open if I ever need anything.
When the bell rang for my class, a stampede of people came out of every room with a door. Apparently I haven't been in a school setting for a while because my first instinct was to run. Making my way through the sea of people and to my classroom isn't the easiest thing I've ever done, and it was actually pretty intimidating. I kind of felt like this:

My class has 6 students, including myself. There's 3 boys, and 3 girls, and today we all sat either at the back or in the middle.
My teacher for Physics is named Ms. Bluemink, and she teaches barefoot, which means I already like her. She's really nice, and laid back. I have her for both my classes next semester as well, which I am excited about, as it means I only have to introduce myself to one teacher and only remember my way to one classroom.
So that was my day. And all in all it was a pretty good first day. I have a feeling this is going to be a pretty good year :)

Sunday, September 2, 2012

I rescued him... and he rescues me

This afternoon, after church, we went out to visit our horses at the lease. On the ride back, I was already forming this blog post in my head...

The grass was swaying gently in the breeze. In some areas it was long, brushing my calves, and in other places it was dancing around my ankles.
Through the path we walked. On the other side lay a large pasture, and at the opposite end of the pasture lay horses, and there, in the back, that one over there, there was my baby.
The horses casually walked up towards us. My mom's horse immediately went over and snuggled her. The other horses pushed each other out of the way to get to the front, fighting for attention, to be noticed. And then, there at the back, was my baby.
He was mad at me. Apparently he was trying to tell me that I wasn't allowed to go away for so long and not see him.
Eventually he decided I had learned my lesson and came towards me. He gave me kisses, letting me wrap my arms around him and whisper in his ear how much I missed my baby and how handsome he looked.
As we walked back through the woods to our vehicle after loving on the horses for a while, I began to think.
Aren't I like that? Don't I, when I feel threatened or like I've been abandoned,try to distance myself to avoid getting hurt again?
Unfortunately I could take a lesson from my horse here because I all too often decide to stay in that place where I am distant and my walls are up around me, my sword and shield ready for battle, as if to say, "You can't hurt me now!"
Yeah, I could take a lesson from that big four legged boy of mine.
Let your guard down once in a while, it's ok to trust people and give them a chance. Sometimes, if you end up letting someone in, they may just surprise you. People make mistakes, be willing to give them a second shot. Don't hold on to your anger and pain and let it stop you from seeing all the blessings you could have received if you had just opened up and not let your anger be dominant.

I do that with God, all too often. Where were you when I was calling? Why did you abandon me? and the wall goes up.
I do that with my friends, if I feel like they are going to abandon me for any reason, even if that threat isn't real. All of a sudden the wall comes up, and I'm not open and real, instead I'm distant, and maybe even a little angry.
I do that with my family.

Maybe I need to work on that... Who knew I would learn so many lessons from my horse? I rescued him, but in the end it was him who rescued me.