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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When the Light Goes Out

You know those days when you get up and think, "OH! It's going to be a good day today!", and it is....until you come home to this:

I got up and took a bath and washed my hair for the first time in almost six days and got ready, and I was all like, "Oh yeah, I get to see my hot neurosurgeon today", and dressed in the finest pair of gym shorts I could find. Put the cute little PICC line cover on, I was basically rocking it. And then I waited for an hour to see that amazingly hot doctor today, and had an excruciating headache the whole time. But then my day turned around because he ordered a lumbar puncture to be done tomorrow. At Children's, with my favorite people. BEFORE my 6 hour and something neuro-psych evaluation. So I said hi to my favorite people, Jamie & Tina in the scheduling department and strutted my stuff to the car because you know, lumbar punctures bring relief. I sang to my favorite songs on the way home with the windows down, and then I walk into my house. Go check on the puppy, and there she tore up the entire wire to a lamp we had in the living room (she got it through the crate). Because apparently chewing up a live wire is SO much more appealing than the couple toys she had to chew on. Also tore up her little bed in there. So I clean that up, get the two dogs to relax, and then my Grandma calls saying she got into a wreck. Then I soak my entire PICC line in water on accident, then my fluids fall over and the PICC starts bleeding. Now I'm just sitting here thinking I'm going to need a lot more than two cups of coffee to get through today. So next time you wake up thinking today's going to be a great day...and lots of bad things happen, remember the good parts. 1. My puppy wasn't electrocuted. 2. There's always more coffee. 3. I'M GETTING A LUMBAR PUNCTURE TOMORROW. 

Where do you go to School?

One of the hardest things about having an invisible illness is the fact that people don't really know just how sick you are. Every time I meet someone, see a new doctor, have a new nurse in the ER or catch up with old friends they always ask the question I dread most.."Where do you go to school?". When I tell them I don't attend yet, I get the question, "Where do you work?". It's like an instant punch right in the face. BOOM. Yes I still live at home with my parents, no I can't have a job or attend school, no I can't always drive, thank you for reminding me. Reminding me of all my failures, and the things I should be able to do. I promise I'm not lazy and I promise that I'm not doing all of this because I want to. My dream is in fact to go to nursing school and be a nurse the best pediatric oncology nurse ever. But you see, in order to do that, I have to attend 4 years of college, and at this moment it's a pretty good week if I make it through without being in the ER. I can't remember a day that I haven't been in pain and almost every day a headache, so strong it makes me vomit, wakes me up from a deep sleep. I'd love to be working as a unit coordinator at Children's right now, but with having brain surgery every couple months and unexpected hospital admissions around every corner, I'm not considered a good candidate when it comes to a job.

Even though I can never take my own advice, if you're facing similar problems just remember these things:

• You are YOU, and that means you don't have to follow every one else. Your dreams may take longer than others to achieve, but don't give up, because eventually you WILL get there. It will make that moment even more special, knowing the fight you put up to get there.
• Who cares what people have to say. They don't face the challenges you do. They don't know the pain you live with every day or how hard it is just to make it through the things you need to get done. Forget them, your situation is different from theirs and they have no right to judge.
• It may seem like nothing will ever change, you may feel hopeless and down because you aren't where you want to be right now. You are where you are supposed to be right now though. Take one day at a time. 
• Focus on your strengths. You can handle a spinal tap like a pro and not even flinch? Bravo. You're able to support others when they're feeling down? Kudos to you. You have the highest pain tolerance a doctor has ever seen? Pat on the back. Basically, you're hardcore.

It's easier said than done, trust me, I know. But you can't let your situation get you too down. After all, when one small knot triggers the world, take a deep breath...it's simply tangled.

You haven't showered in 5 days??

Nope. In fact, I've barely managed to get from the couch to my bed, and vice versa. I think the only thing I've accomplished in the last few days is watched Despicable Me four times, and gave my puppy, Minnie lots of cuddles. I've pretty much lived off of cupcakes (thanks Lucricia! You can get yours here). But guess what? When living with a chronic illnesseS this is a common thing. Sometimes my body gets to that shut-down point and is all like "no, I don't care about what you want, I want need you not to leave the couch." The fact that my body is still trying to recover from bacterial meningitis with a practically non-existent immune system probably doesn't make it any better. I have a week full of appointments and testing, and a very bouncy puppy, so my body better just suck it 54896+-6+-/+* (Apparently Minnie wanted to give a little hello) up and deal with it, because I have an appointment with my hot brain surgeon tomorrow and I'm not missing that. Even though I've slept the majority of the day, this fatigue is hitting me hard and I'm supposed to be at my appointment by 8:00AM - bring on the coffee. It's 7:30PM now, so I'm going to watch Despicable Me for the fifth time (or I'll be a little rebel and watch Tangled) and pray Minnie sleeps through the night. But if she doesn't....who could be mad at this face?