Finally home!

    Ok so today was a long day.. Starting with being woke up at 3am by the fire alarm in our hotel going off. So gues who had just had a spinal tap and had to walk down the stairs from the top floor? Me that's right. No one was harmed, it turned out just to be someone's stove was left on. After 20 minutes we we're let back into our room.

    The flights back were pretty smooth yet, my ears did pop, and were sore. I did have a slight headache on and off as well. 

    But we're home, safe and sound kind of weirded how quickly it came to pass and now it's over. Honestly though I'm glad to be back.

Lumbar puncture

    Yup today was spinal tap, lumbar puncture to be preciese. Just gonna say it was not fun. It went smoothly at least the doctors said it did, so that's a good thing. It did hurt however. After I had to be observed for a couple hours, and I managed to eat some lunch (Chinese)

    Little sore, and a slight head ache (which they said would be normal). Gonna try and rest some. Head home tomorrow, I'm glad the worst part is over.

Where the procedure took place.

IQ testing day

    Today was mostly testing my IQ. It was delayed an hour so for half an hour I laid in the waiting room watching an episode of Gilmore Girls. Then I talked dad into letting us quickly go to one of the cafeterias and found a sandwich and milk for a small lunch.

    The testing was long, some parts were interesting, though some just made my head hurt. A lot of mental problems and trivia. I should get the results in a couple weeks. Hopefully I did well. 

    Tomorrow morning is the big kahuna. Scheduled for 9 am. I'm a little nervous (ok quite a bit nervous), but I think we are going to Applebee's for dinner later tonight, gonna rest a little first though ha.

Meeting the staff

    Today was first day at the hospital I got to see Dr Munzer and my old nurse heather both from the original clinical trial that started elephrase. I also got to meet the new nurses and staff involved in the new trials.

    I had to get labs, bloodwork and a few exams done. The blood sadly had to be drawn from a vine and not my port. That wasn't fun lol. Then mostly we just went over the details and I signed some forms. 

    After we ended up going to red lobster for endless shrimp (love red lobster) and dad surprised me by getting the band R5 new album LOUDER from target. So today was good all in all lol.

The hospital 

The new R5 album LOUDER dad got me.

UNC travel nightmare

    Well so I can honestly say the trip up to UNC was not a walk in the park. The flights were both delayed, that alone wouldn't have been bad. However, once we got to Raleigh we realized our itenerary only had the flight info. No rental car info, or hotel info.

    We had left the house around 3:30pm and didn't arrive to ralliegh until about 9:30 that night. We tried calling but we got voicemail due to it being so late I guess. Then the emergency number connected us with someone from the UK.. Finally I just gave dad the phone vanf after an hour of him on the phone we got the info, and headed to get the car. Then we finally managed to figure out which specific hotel we were staying at, and we ended up in our room at about 11:30pm. 

   So yes it was quite a day, and it's only just the beginning lol

The car we got a red Charger :) I was very happy with it lol

Getting ready to go back to UNC

    Well i'm starting to get ready for the trip back to UNC. It looks like its going to be monday september 23rd- friday september 27th. Am I getting nervous? A little honestly. It will be nice to see my doctor and nurse again, but i'm honestly not looking forward to the lumbar puncture, and i'm hoping everything goes smoothly.
    I will keep updates as the trip progresses, but currently the lumbar puncture is scheduled for thursday, they have a few things that have to be done and checked before I get that done.
    Like i've mentioned before this is voluntary I could say no and it would just disappear, but there aren't too many people who are eligible, and part me feels like its the right thing to do. Some people say i'm brave, but honestly i'm kinda scared lol.

Hold on to truth

    How is it that sometimes we let things control us? Things like fears, and doubts that are whispered in our ears, when were all alone. Why are we so willing to believe those things? Especially when if we take a step back we can clearly see things aren't whatever's been planted in our heads.  I think it has to do with the situation, if you have fears of being left alone or forgotten, then thats when the thoughts will start, when your alone away from people.
    These doubts start from something that is there, small but we all have doubts, and insecurities, but that is what makes it so hard when it gets planted in your head. Its something you truly do fear, only its been heightened to some degree.
    How do we get over them? I can't honestly say, but I think it has to do with holding on to the truth. If you can step away and see thats nothing is wrong, hold on to that. The mind sadly will fall for tricks at times, I know trust me. For me, sometimes I feel like i'm alone, or that the people I consider close, might not be so close after all. So I hold on to memories, because if they truly didn't care they wouldn't act, or do all the things they have for me. Once again truth helps shed some light on things, but I do understand that it's not a one time struggle, but thats life we get the good along with the bad.

Dream dream dream

    Where would we be if we couldn't dream? Dreams are our escape, they help us work through our subconscious minds. Things we push away because we don't want, or know how to deal with, dreams are a way that sometimes force us to face the problem. Without dreams in that respect we would never work through our subconscious. 

    The fun part of dreams, you get to do things you wouldn't normally do, remember a dream is simply a wish your heart makes, so they let you experience things that you want. For me good dreams are full of so many things that I didn't get the chance to do, which is nice because in a way I did get to experience them:)

    The bad part of dreams is that some aren't always good dreams, some are nightmares, fueled by our fears. However, those I think are once again our subconscious trying to get us to face some inner problem we are trying to avoid. Yet I know some nightmares can leave you waking up in the middle of the night alone and terrified. 

     Dreams are powerful, and don't ever let anyone fool you into thinking someone or something can take away your dreams. They may change over time as you get older, but they will always be yours. No one can take your dreams away from you. 

A place to fall

    Sometimes were all gonna hit a rough spot, a bad day, something that just brings us down. We all have those moments so, don't deny that you do. I know at times even in a crowd I get lonely, and I bet i'm not the only one who feels that way. I think sometimes we just wanna get away from it all, and sometimes we honestly just need a place to fall.

    Whether it be a place that we can go all ourselves and be alone, or maybe it's a certain person who knows the you that you don't always show everyone, and they are still there for you always. I don't see that as someone giving up, more like they are just taking a break. In life we will get hit so many times from all angles, and there will be times when we truly just need a place to fall. 

Where's life heading?

    That question sometimes scares me to be down right honest. I mean I'm 21, which is a miracle, but for a while I wasn't expected to live that long. I finished high school, and I'm working on college, but where is my life heading? 

    I want to be a writer, an author of novels. I'd also like to be a photographer, but that's the thing I'm still just wishing. While the people around me seem to have everything so under control and planned out. Sometimes it feels like everyone is passing me by, or is getting ready to leave me behind.

    I want to work, I truly do, but at the moment my hands are tied. I know I have talent in both areas of my interests, I just gotta figure out a way to get myself started. 

    I am tired of how some people look at me like I do nothing, like I don't have any cares, or motivations. I keep busy, and I help people, I help throughout the church, I'm continuing taking classes online, as well as dealing with medical stuff. Yet there are some people who see me as if I'm not doing all I can, and that I don't care. When in fact I do care and wish I could do more.

   One day I will find a way to reach my aspirations. I'm just not sure when it will come to pass.

Every opportunity

     When it comes down to it, sometimes I think about the fact how it seems like I've had every opportunity to just give up, every excuse to just quit, to just say you know what I've had enough I'm done. However, I never do, I don't know why, but I never seem to give up or quit.

    People ask me do I blame god for getting MPS or having to deal with all the stuff I go through, and honestly I don't think I've ever blamed him, or got angry at him despite what happens. Yes I get nervous, or scared, and wish at times that I could pass some things by, but somehow I manage to push through. 

    I've overcame so many trials that I wasn't supposed to, I keep finding a way back, keep fighting. Have every legitimate reason to give up, yet for some reason I choose not to. I don't know if its for my friends, family, or a way to keep serving god, but I hold on to those things, and I think those are the main reasons I keep pushing forward.

Speaking at FCA

    Well I made it to Northwest High School FCA meeting this morning (on time I might add), and think that everything went pretty smoothly. The speaking was easier than I thought it was gonna be. My friend Triston was talking with me asking the questions, so it was sorta a question and answer, back and forth chat. I got to talk about my medical history, what i'm doing with my life now, and my life with christ. The talking back and forth made it less stressful and more casual, so it was easier than I thought it would be. Plus I knew a few of the people who were listening (friends) so that helped too I think.
    I think the students listening enjoyed it (they didn't boo ha), when I was done they clapped, and a few came up and thanked me for sharing my story. I know some of their eyes grew wide when I mentioned the part where technically I was supposed to be dead.

    All in all I think it went good, and I hope that they enjoyed it. I think I would gladly speak again if someone wanted me to.

public speaking

    Well, tomorrow it looks like i'm going to be speaking at NorthWest High School at an FCA meeting about.. (myself I guess lol).  Honestly i'm kinda nervous, I mean I give my life story speech almost on a weekly basis to new interns at my treatment, but thats not the same really as talking to a group of people now is it? I have took drama classes before, but I still tend to freeze up at times.
    I may not know everyone, or even a lot of people there, but luckily I will know a few. Plus someone will be talking with me, asking me questions, so that should help keep me focused. Part of me at times wonder is it really that great a story? Some people seem to think so.
    Hopefully I wont trip on the stage, freeze up, or just make a complete fool of myself lol, but when a friend of mine asked me if i'd like to, I decided to try it.

voluntary

    Looks like September 23rd I am heading back to Chapel Hill, NC to be apart of a different clinical trial, I know we are still trying to make travel arrangements, but it should last until the 26th, so not a long trip. I wont say too much about it other than the fact it will include a spinal tap in the form of a lumbar puncture (Not fun).
    However, I just wanted to post this so when I go its not a complete shock, and yes this is voluntary, I could say no, and it would go away. However, it's something that I can help with, and not many others can. So I feel like its the right thing to do, even if i'm kinda nervous.