Small Victories in a Rather Large Defeat

     This is a more serious post on this blog. It was a little more difficult for me to write this and to share this with readers. For me, it's a pretty sore spot still Choose to read it, choose to carry on with your various activities. I support you either way.

      Recently I noticed my memory has become a bit foggy and I can't seem to remember photos, memories, simple tasks, just things, anymore. When they were taken, who took them, or what was happening. I was shocked when my nuerologist told me I had some memory...something. I think that was his nice way of saying I'm just super forgetful.  
    But the day of the "reality check" if you will, was absolutley heartbreaking for me. I was with my sister and boyfriend. My sister was doing her makeup in my mirror and we were sitting on my bed, all listening to music. I was staring at a poster my other sister (I should give them code names, seriously) had made for me with tons of my favorite pictures on it. She had people all message her nice things about me, or memories. Just overall, very pleasant things. She then wrote the nice things between the pictures. I absolutley love it. When she gave it to me, I almost cried. See? I can remember receiving the gift just fine. Just not anything else about that day. Yet, I am hopeful.
     So I was staring at the photos and thinking;
     "I can't remember this."
     I would look at another picture and the same thing. No clue what any of this was. All I knew was the fact that these were all my favorite memories at some point in time. That these meant something to me. And then the big one hit me. It smacked me in the face like a brick. I told my boyfriend and as a bestfriend would, he has been a great help to me through it all.
     My favorite picture of my dad holding me, and he was smiling. Anyone that knows us, knows that when we force a smile, it looks like a trainwreck. But in this picture, my dad was holding me and has a big smile on his face and I just look so excited to be in his arms. I know why I am, because I love my dad. But to have the memory of him holding me like a princess is priceless to me.
     Let me tell you something. It's not all losing when you have this. I forgot my speed dial code for the past two months. I have tried every logical number and finally I just typed a random code and it worked! I sat on my porch crying because I remembered something. So there are some small victories in the struggle.
     So I know I willl never get my memories one hundred percent back, but as long as I get those pictues saying those great moments happened. Those beautiful moments, in perhaps the scariest time I'm yet facing, still happened. It was proof that there was light in the darkness, that there were people staying strong for it all.

Keep searching for the little moments, they are real. They are beautiful. And they will last forever. Stay strong through it all, and always always always keep going. You are always bigger than the fight. You are even more than a memory. You are going to be remembered as something wonderful because you are something wonderful. You are not a disorder, you are not a weakness, or a disease. You are more than a sickness.

-Kylee


     

Mission Statement?

      This last month I've been preparing to go to Canada. In doing so I've been sleeping, hanging out, going to doctors appointments, and catching up on the readings they sent me for the retreat. Not only do I hate reading, I have an incredibly hard time with the matter itself. So I started right away and chose the easiest book, "The 7 habits of highly effective teens," by Sean Covey. I leave in a few days but I'm only on page 125.

     Oops. 

     It talks about a mission statement in the book and how to make a mission statement. Well I still don't know what my mission is, or how I plan to make one. I've tried all the methods and still nothing comes to mind. No plans, no problem is what I've always thought. But actually; no plan, big problem.

     Preparing a mission statement is supposed to take no thought. Just come up with what you want from life and make a plan of how you're going to get there. Well, I have no idea what I want from life. So easy breezy...you know the rest. I decided to start in the Eduation route. This was a little tricky for me. I feel like a kid! I had to ask to use the bathroom three months ago, and now I have to plan my future in a week?College isn't my first choice.

     Okay...traveling? Wallet is giving me the stink eye right now. That's a no go for now. But I'm going to squeeze that into my future plans. I've always wanted to travel, to experience a different lifestyle than the one I know.

     Good, traveling is a part of it.

     And that's it. So I stopped and got frusturated and asked myself a different question. Where do I want to be, ten years from now? How do I picture it, exactly? It hit me like a freight train. I saw a perfect image of how I want it all. And it's simple to plan how to get there; the basics at least.

     This took me about two weeks to type. Part of which was forgetting to plug the tablet in from returning from the Great White North (which was fantastic by the way)  But mostly, was figuring out how to write this without being a journal entry. So that's it for now. Try it out, either way might work. Set goals, because those are probably the only things that keep us going in a crazy world. 

The Normal

     

     Its 1 AM and I've been thinking about this a lot. Best way to get it out? Expose it to hundreds of people. I was driving home from school and had a thought of this is how it feels for my body to be normal now. But I'm on medication that makes it all funny feeling and sick throughout the day. So I got to thinking, what is my actual normal?

    For the longest time I wanted the same thing all people want. I wanted to be normal. Cliche, right? But in this sense I wanted, no, more like craved to feel like a normal teenage kid. Which seems impossible to some. But to me there is "the Cliche."  I wanted to live, feel, breathe it. 

     I wanted to know what normal felt like again. To feel things on my fingertips without the medications again, to see light without the random colors surging through. I wanted to be in the normal world. I dreamed it. My world is strangely beautiful, but it's not what I wanted anymore. What was my normal?

     It's still hard to wrap my mind around that every single person has a different world. Yes, we are all on Earth. However, we all receive it differently. We see, feel, and live our lives differently on it. Some ways we live it are completely different than others, physically or emotionally. So I think to say we are all our own worlds is appropriate here. So is there even a normal world? 

     I most certainly think so. Still. All of us are individuals, as noted above. But the fantasy of normal?  Where would it come from, if it never existed? Why would the idea of a normal person exist, if it wasn't a thing? 

     Well for those who end up reading this far I will tell you what I did with my aspirations. Stop reaching for someone else's normal, reach for your best, but not someone else's. I instead enjoyed life, enjoyed my family,  friends,  the time I haveq and slowed down. I cherish moments that are given to me and will continue to do so. Don't wait until the face of the Normal hits you. 

      I won't know what a normal body feels like. That is something I've personally had a hard time with. Before medication? That sure as America wasn't normal, and after was the same. The best way to put it, I feel like im in a candy coated body with a melted inside. Like a melted M&M. I was tempted to write about a normal life but lets be honest, no one knows what a normal life is.  

     I know I get distracted while writing but bottom line is, dont chase after the normal. Be your normal. Whether it's swimming through lakes with scary fish, driving until three in the morning, dancing in the grocery store, do whatever you need to make yourself happy, the normal you want, is obviously not the normal you need. So do what makes your life feel "normal" (not overwhelming, stressful, etc). 

Late night thought closed. 

#morethanasickness 

Just So You Know

It dawned on me that I was writing a blog based on personal experience and witnessing, but none of you would have any clue who I was, or how I would know. So here it is. Choose to read it if you'd like.

My name is Kylee. I am the youngest of four, all daughters.We were all born close together so the teenage years were exciting. Family is by far the most important thing to me. My sisters have been my best friends throughout my life and I don't see that changing anytime soon. 

I find education very important and I have a love for astronomy. I want to pursue modeling, and then attend college so I can have a degree in....everyone changes their minds ;) 

Now to the stuff you are probably curious about. 

Severe stomach pains, I was treated for an overflowing appendix. This went on for a few years before we narrowed it down to gluten and lactose intolerance. Which we figured out this summer {2015} During this time I got a concussion in a car accident, however through testing we haven't found anything that this has led to seizures or migraines. But this messed with me mentally for the year later. {2013} And then for the Big Daddy. During the spring of {2014} I passed out and woke up with someone yelling at me. They restrained me to a chair while I was having a grand mal seizure that had lasted for a long time. They did not call my parents or an ambulance {By the way that's what you're supposed to do} so that was pretty lame of them. 

Through the last few months I've had episodes and severe migraines. I lost my reading and math abilities for a while there, but I got the reading part down again...obviously. 

I care for all of you, and I don't want any of you to give up. If you want to give me your stories and wish to stay anonymous then please drop your email me :) I'd love to give others more stories than mine. Keep going forward, and remember you are #morethanasickness

Much love -Kylee

Only Part of You

Viewers,

     Hopefully you are reading this. Yes you, the one who is all too familiar with prescriptions and scheduled appointments. The one who is waking up or going to sleep with the fear and knowing they might not wake up, or just knowing that the next day is going to be just as hard as the one before. Well here is a quick post from my Instagram and Facebook with some edits in this copy.

 This is where I usually insert some weird quote but this time it's serious.
Diseases are awful. Big or small. They all come with unexplainable challenges that ...others just don't get. But as a seizure patient,  I'd like to share some lessons I learned.
I was told it was okay to be scared once in a while and oh sugar it isn't. It leads you to fear yourself. It leads to mental and emotional breakdowns. Simply because you believe it's okay to be afraid of the sickness, which you might think, is you.
So my darlings. Picture. I chose this picture because this is just regular me. Gluten, lactose intolerance, asthma, seizures, chronic migraines and all. But I look genuinely at peace. Why? Because I found through this past year;
You are not your disease. It is a part of you. No one will understand it like you. But you are a strong human. You are a person. Not a disease. Not a disorder. A fighter. Do not fear yourself. Don't let yourself become something that's in you. You're more than this. Disease is a sickness that will toy will you and weigh you down. But that's not you. You are you. ‪#‎morethanasickness

{I have seizures but am in the diagnosing process, not yet diagnosed with anything, I have been led to believe I do by one doctor I have been told I don't by another. So I am going on the safe side and saying I don't right now so I don't discredit those who do. Much love}

-Kylee