Winner, Winner, Chicken Dinner

You know when you're so excited for something, and then someone goes and ruins it for you? You're immediately thrown into negative thinking and can't believe what's happening. Something like that happened just recently. Except now, I'm realizing just how much of a blessing it has turned out to be. This person may have tried to break me down, tried to kill my passion, but guess what? You can't break me down. You can try, you can most certainly make me question everything, but in the end, you're not going to be the one that wins. I may not have the same opportunity anymore, instead I have an even better one. So, thank you. Thank you for trying to hurt me and trying to bring me down. For trying to take away an exciting thing for me. Because in reality, you have actually given me an even better and much more exciting thing. And guess what? You're sitting in jail. Now who wins?

IT'S SO FLUFFY!!!

I thought I would do a little post about the bad sick days, and I how I get through them. Especially considering today is a bad sick day. I've spent all day throwing up and fighting a fever. I'm required to go to the ER anytime my fever reaches 100.4, and I've been 100.3 all day. As you all know I suffer from a few chronic illnesses. I am always in pain, but some days are worse than others. There are many days I'm unable to get off of the couch/recliner, or out of bed. Some days I have to crawl to the bathroom because I am so sick. In order to get through those kind of days, I require a lot three things; blankets, disney movies and stuffed animals. I know it sounds like a list that belongs to a five year old, but it's what really comforts me. I seem to have an obsession with soft/fluffy things. I have several blankets that I love, a really soft zebra one that I made, two Hannah Montana ones, a Tangled one, and a Disney Princess one. They're soft, comfortable, keep me warm, and brighten up the room. I always take a few of them with me when I have to go to the hospital for surgery/ER visit/in-patient stay. The next thing I love need is Disney movies. I love Disney and watching the movies help to slightly distract me from pain, and of course give me a few smiles/laughs. A few of my favorites are: Tangled (Of course!), Brave, Beauty & the Beast, Cinderella, Snow White, Bambi, Lilo & Stitch, Princess & the Frog and Despicable Me. These are also must-have things in the hospital. The final thing that gets me through the day are stuffed animals. I don't know what it is about little stuffed creatures, but they provide a sense of security to me. All of my pillow pets and stuffed animals have been bought for me by other people, and I treasure them more than you could imagine. I have a little piggy that I got before I was even born (I don't take him to the hospital in fear of losing him). I also have a few build-a-bears that I hug on all the time. My favorite is my Disney Princess build-a-bear. That one is a must-have for any hospital visit, no matter what. I also just recently got a zebra build-a-bear that my old boss sent me and it's SO fluffy and soft. I have a few other favorites like my Minnie Mouse pillow pet, dog pillow pet, pig pillow pet, the pig my Dad bought me after my first brain surgery and my bee pillow pet my best friend bought me. If I'm sick, you'll always see me hugging some kind of stuffed animal. Whenever I'm in the hospital I also make sure I have a few with me. Sick days, hospital stays, and surgeries certainly are no fun, but it makes it a little bit easier when you have something to comfort you. I'm curious, what are the things you need when you're having a sick day?

Right after one of the many brain surgeries. 

I've been looking for a stuffed animal from the movie Tangled for the longest time and haven't found any. If you know where I can find one, let me know!

Invisible Illness Awareness

September 9th-15th is considered Invisible Illness Awareness week. It's pretty important to me, as I suffer from quite a few invisible illnesses myself. Invisible Illnesses are hard to deal with because often times you don't look sick. If I had a penny for every time I heard "you don't look sick", I'd be richer than Oprah. I like smiling, smiling is my favorite, because of that it's hard to tell when I'm in pain, even though I'm in pain 24/7. My body fights against me constantly, on the inside, which is why it's hard to tell on the outside. The comments from people thinking I'm just lazy instead of sick hurt. I'm not trying to get disability because I'm too lazy to work, I'm trying because I'm unable to work. Because it takes everything my parents have to cover my medical expenses. Because I have bills as an adult that need paid. Because the 23 medicines I take daily cost money. Because my immune system is so low the slightest infection can turn serious in minutes, meaning I shouldn't be around too many people. It may be invisible to the eye, but look inside my body & it tells a whole different story. This video was made by a girl with an invisible illness and I think it speaks volumes. Kudos to Kelly!

When you see someone parking in a handicap spot who seems to walk fine, don't judge them. They have a handicap sign for a reason, because they are sick. Maybe they pass out at random times. Maybe their arthritis is extremely bad. You don't know the struggles other people face, and what their bodies do, so just remember that. Invisible Illnesses are just as serious as visible ones, so this week, reach out to someone with an invisible illness. Let them know you are there for them. Offer to do something for them. Give them a hug. Be a listening ear. It doesn't matter what you do, I promise they will appreciate it. Happy Invisible Illness Awareness Week!

Short Update:

I haven't been able to blog in a few days partly because I was annoyed with mean people, and partly because I've felt like a truck smashed me into many pieces. However, I was quickly reminded life doesn't stop for anybody. I just found out last week I'll be having another brain surgery on September 26th, since I hit double digits I've pretty much stopped numbering them. Between now and the 26th I have a tilt-table test, MRI, CT scan, pre-op testing, numerous doctor appointments, neuro-psych testing feedback, dental appointment, and multiple LPs scheduled. I'm sure I'm forgetting something. All these seem completely minor as I see little Princess Maggie fighting a fever in the hospital, as well as a few other girls up on the Oncology floor. Makes me sad to see them so sick and knowing there's nothing I can do. Hug your puppies, kids, plants, whatever means most to you, and be grateful you're breathing today.

20 Ellie Things

Alright, I've seen this going around on many blogs. So I thought, why not join in? After all, I have been confined to my recliner for the last couple days. Here's a few, 20 to be exact, random facts that you may or may not have known about me.

1. I have always loved working with kids & can not wait for the day that I have a few of my own.
2. I believe that loss and pain in life can truly shape you into a kind, compassionate & absolutely beautiful person. The beauty that comes from within can shine through & be so infectious when genuine.
3. My dream is to be a pediatric oncology nurse & no matter how long it takes, I will make sure I get there. The kids are just so amazing & inspiring. <3

4. I've been told by multiple doctors that I have the highest pain tolerance that they have ever seen. It's both a blessing & a curse. When I'm in severe pain, they know it must be serious.
5. The majority of my time is spent in the hospital or at doctors appointments, but I make the best of it. I've made lots of friends between all the nurses, PCA's and volunteers that I meet :)
6. I look up to so many people, I truly think it is important to have role models. I wish everyone that I look up to knew just how much they mean to me. Ilana, you're one of them. Thank you for inspiring me to blog, and to start writing again. I appreciate you more than you know.
7. I LOVE shopping for school supplies, even though I'm not in school. I could spend hours picking out notebooks and fun folders and pens.
8. I still enjoy the small pleasures in life like popping bubble wrap.

Isn't it just so tempting?!?!

9. I love am obsessed with pink, glitter, and zebra print. It just makes me so happy. Everything is better with sparkles.
10. I almost always feel guilty/bad/wrong for whatever it is I'm doing, especially if I enjoy it. Even little things, like blogging right now, I should be doing something productive - even though I am too sick to do anything productive. It's just a vicious cycle.
11. I'm shy. Super, duper insanely shy. I get flustered in conversations and panic thinking about meeting new people. Part of it has to do with the brain damage and the fact that I'm always afraid someone will judge me for forgetting what I was about to say or not making sense.
12. Disney has gotten me through some of the worst times of my life. I absolutely love disney movies & I think it comforts me because I feel like a little kid and safe. I know this probably sounds completely weird and so childish, but when I'm recovering from a major brain surgery, the only thing I really want to do is watch a Disney movie. Tangled is my favorite, hence the name of the blog and I may or may not be watching it right this second :)

13. I've always had a passion for writing. English was the one thing I was good at in school and thoroughly enjoyed. I had to write a speech in 11th grade and got 1st place in the whole school, I was supposed to go to regionals but I was in the hospital and had to miss it. I've always wondered how far I would have gotten.
14. I'm an only child and most people don't believe me when I tell them that.
15. I would love to wear dresses but I'm 5'9" with long legs and most dresses look like a long shirt on me, and I just can't do that. Also, for being so tall I have super tiny hands & wrists, all the nurses tell me I have baby hands.
16. I smile. A LOT. No matter what. Every one says it's contagious.
17. My favorite thing to do is drive around with my windows down & music playing, and singing of course. It's just so relaxing.
18. I used to play volleyball & horseback ride, I had to quit because I got too sick. I miss it and always wonder where I would be with it today if it wasn't for getting sick.
19. Grey's Anatomy is my favorite tv show ever and I watch re-runs ALL the time.
20. I just got my very own puppy that is all mine and I couldn't be happier. She brings so much joy and is a huge comfort to me when I'm sick. She's my best friend.

Out of Spoons

Tomorrow I have to be up, showered, dressed, coffee in belly and at the hospital by 8:00AM. Pretty sure this is what I'm going to look like when I show up tomorrow, only probably not as cute.

8 is when I'm scheduled for my LP, and then at 10 I have an appointment where I will start my neuro-psychological testing, I'll have a break at 12, and back at it at 1. Today I had one appointment, ONE, and then I went to pick up some amazing cupcakes and I am exhausted. In pain and exhausted. I just can't shake this fatigue no matter how early I go to bed, no matter how many hours of sleep I get and no matter how many naps I take. I need to learn how to count my spoons better, because clearly I'm not taking care of my body. Yes I had ONE appointment, but that was a few hours long. Looking back I should have known my body wasn't up for much else, but you know, sometimes that whole being a teenager thing really gets to me and I try to be all super girl and tackle everything. Then I come home, with not even enough energy to eat even though I forgot to eat all day. And I end up, in bed...at 7PM, with an ice pack on my head. Good night. Also, I promise my entries will start to get better, once I learn all the ropes of this whole blog thingy-ma-bob.

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