Two Years

I was given two years to live.

You know that it probably isn’t a great sign when the specialist you are waiting to see tells you that if you don’t get onto a shorter wait list, you won’t live to get to meet them.

I’ve made it a year and this is what I have to say;

  1. When someone puts a limit on your life it does effect the way you choose to live it.
  2. You will want to make choices out of fear of the unknown but those make out of love are so much more valuable.
  3. you will find your people. You will meet other sick people and they will understand. You will meet people who aren’t sick and try their best to understand. that is all you have ever wanted.
  4. You still hate stairs and climbing hills.
  5. Everything is temporary. The love of God isn’t.
  6. Telling people you are a Christian is allot less daunting then you make it out to be in that mind of yours.
  7. You will miss getting to eat spaggetti and meatballs.
  8. You will learn to love to paint.
  9. That blog thing you have been talking about since you were 10, you’re doing it.
  10. You have been out of physical therapy for a year and a half and haven’t once regretted that choice.
  11. You are learning what it means to follow.
  12. You have learnt that potential isn’t enough you have to work har for your dreams, even if you have too many to focuse your effort.
  13. Being goal oriented isn’t selfish.
  14. You wont have everything figured out.
  15. You still cant drive.
  16. You will be thankful for your life in a way you hadn’t yet experienced
  17. You want to get to grow up.
  18. You will be off medications once again.
  19. Choices about your health don’t get easier.
  20. You know nothing compared to what you will someday.
  21. You still love life with all your heart.

Here we are halfway through that two year mark and while I know those words may have been uttered out of a professionals mouth the words of my creator is what matters most.


Running Marathons

For weeks I have been dreading going to the doctor. Now as someone who is chronically ill, this may make no sense. None. It didn’t to me until it happened to me.

I couldn’t understand why people wouldn’t want to know what was wrong so they could “fix it” but what happens when you realize the fixing isn’t coming.

I forgot. I forgot how I used to fight. How I used to see God above all thing and as the creator of all things. If you see Him at the top, dotors don’t seem all knowing any longer. While I trust, and pray, that God would place me into a set of capable health care providers, where he wants me, I never believed they had the final word. If God can make the entire universe in six days He can heal me if that is in his will.

I forgot that maybe this isn’t God taking away another piece of my health, like so many times before, but maybe He is protecting me in more ways then I am aware of. Maybe the endless test results and normal numbers really do mean that I am healthy in that aspect. I failed to see that God wants me to be healthy just as much as he has a place for me to be sick. It doesn’t have to be one or the other.

As the case with many sick kids I was mandated to see a psychologist. The idea was to asses my mental state and help my adolescent mind deal with the idea of a lifetime of illness.

My psychologists never understood my mentality. I am not textbook and I don’t make sense. When they would  ask what my goals were I would always answer to run a marathon. That was always followed by a conversation about having to readjust to my expectations for my life. They had no concept that from the beginning of time God has had my expectations in mind. He knows what I am capable of and where He wants me. I still believe that one day I will run a marathon, if not in this life then when I meet my maker.

As I walk into that appointment tomorrow it has felt like I have run a marathon to get there.


Fear Is Bigger Then Monsters In Closets

In my life, I have been afraid, of swarms of bees, being stranded on an island, or even high up places. There is one fear though that is bigger. I’m afraid of not living. Yes, that is right, I’m not afraid of dying but the chance to miss out on living.
My health is a mess and each day it sinks in a bit more that I will never be healthy. I have to go through a grieving process that this ideal body that I once longed for isn’t what I have got. This is something I have been struggling with for the past few months. I have a body that is fighting to function. One that is covered in scars from being poked and prodded more than a few times. My body is a canvas for the life that I have lived and each mark has a story; It is there for a reason.
So how do I deal with fear? I avoid those things that scare me. I bottle it up and don’t tell anyone truly how scared I am, and yet I am telling the entirety of the internet. I am afraid to go to the doctor because all I am ever told is how I will never get better. How what I am dealing with they don’t know much about. How they don’t know what exactly is wrong with me except that I am one very sick girl.
I am afraid to tell people because I don’t want to worry them. I don’t want them to feel the depths of my medical woes so I shelter them and filter the information that I think they can handle. Nobody knows about the dark nights in the ER bargaining for my life with God or how I stop breathing frequently in an attempt to control my pain. I mask my symptoms so that I don’t make things hard for others. I never want people I care about to think about me differently or to be overwhelmed by me.


In the past, I have had countless people judge me for my health. I don’t expect people to understand what is happening to me especially since I don’t let people fully in. I have had people tell me that I am faking being sick, that it is a choice, or that it is too hard to handle. It’s ironic that something that I am most scared of is the same thing that I can’t fully hide even if I try my best.
I can’t hide my discoloured limbs, I can’t hide my limp as I wobble along, I can’t hide my episodes of brain fog and mental confusion.
Sometimes the hardest part of being sick is accepting what is happening to you and allowing others in to help you through that process.