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?