Wednesday, April 12, 2017

It Ain't All Sunshine And Butterflies

      So this post is about to get real guys.... Like real real the depressing then happy real if you get what I mean....

      Life honestly guys it sucks sometimes, we all know this. As far as I'm concerned NOBODY'S life is perfect! We all have our bull crap that we go through! And this is mine ( this is where it gets real guys)

    See life as a person with Treacher Collins Syndrome (TCS as I often refer to it as) is crap sometime, (I can't speak for anyone else when I write this is my own thinking and experiences.) endless doctors appointment, 100+ hours of surgeries, probably years of hospital stays, millions of dollars put into medical stuff not just surgeries, dissapointments, depression, and the stares. I haven't logged all my hours in the OR yet but I'm sure if I did I'd be well over my age. Spending hours at the doctors and hospitals you learn really quick what to take and what not to take with you, the money spend on medical stuff is astounding and that's what insurance pays. But flights for surgeries, hospital bills, gas bills, bills, bills, and more bills! t adds up to a lot! 
    The emotional side is a completely different story, the bad news that a doctor can't help you can destroy a person you build up so much hope and sometimes they take it down in a single sentence. Having a surgery not work for one reason or another is devastating the hours spent prepping for it and having it not work out in the long run is so freaking frustrating. I'll admit depression it hits hard, oh there are dark dark dark days. There are days when I do go to the store or something and I'm usually pretty good about ignoring the stares or smiling but if I have had a bad day or I'm just sick of it I do snap. It doesn't happen very often but it dose. Its annoying! Imagine going into Target and walking around and people are just gapping, honestly I have wanted to wear a mirror so they can see how ridicules they look.  But then I figure ehh I'm working it so let them stare. ( this is why I never leave the house in sweats or pjs.) 
    But one thing I've learned through out every single thing I've gone through is that its okay. its okay to go through crap, its okay to have people stare, its okay to feel depressed. Because the thing is YOU ARE ALLOWED TO FEEL WHATEVER YOU WANT TO FEEL. BUT IT'S WHAT YOU DO WITH THAT FEELING THAT WILL AFFECT YOU.  My therapist told me that once and it has stuck like glue to me. I love it!  So I have no clue if this will help anyone. If it dose great if not it helped me so great! 
   I know its been a while since I've written but thats because I've been going through a lot, I'll write another post on that soon. It'll be a long one. 

Saturday, September 24, 2016

It's been a while two years in fact...

   Oh man, two years... Life has a crazy way of slipping by!
What hasn't happened in these two years? I feel like I am a whole new person since I graduated from Dixie.  Well I guess I'll start with my moving; last year I decided to move from St. George and try living on my own. I decided to move up to Ogden Utah do to a job offer up there. I loved it so much, I had just started to make friends and feel comfortable. But unfortunately due to some unforeseen circumstances I needed to move out of that area. So I got a new job in Salt Lake City, up at Snowbird Ski Resort and moved to an apartment in the area. Let me tell you this is the best place that I could have ever ended up in. I have made the best of friends and have grown personally in ways that I know I never could have done if I hadn't made this move.
    Medically, to be honest I am still struggling. It's been five years since my Ohio experience and everyday I am faced with the pain left over. But recently in the past few months we have found an doctor who is willing to help me take the pain away. So next week I am headed towards Maryland to have a surgery done to essentially cut the nerve. So I will be numb but anything is better than this pain I have been dealing with.
   I know this isn't a full detail of everything that has happened in the past two years, but it's most of it. life is crazy, but it keeps going. I cannot promise that I will be as diligent as I was well I was in High school but I can promise that it won't be another two years before I update.
   Personally, I have changed more than I could have ever imagined, some for good some I need to still change. Living on my own has taught me so much. Money isn't just something you can have all the time (Still working on that), Work is something you have to do if you want to eat and be able to have some gas. Mental health is one of the most important things you have to take care of as well as Physical health. Making your own doctors appointments will never be easy, and most importantly You have to find yourself.
    I am still trying to find myself and personally I don't think any of us have found ourselves, I think we have found parts of ourselves and our life's work is to put them all together as they come.
I am really excited to get back into blogging. It's been way too long.
Thanks for reading! i will post soon!

Wednesday, July 9, 2014

Let's play a little catch up!

    Guys I know it's been forever but I can explain! I've been crazy busy thee last couple of months with graduation and with my crazy busy life! You know the crazy thing about being a graduate? At first I wasn't sure if I wanted to graduate because that would mean leaving my safe haven of school.  Not being able to see all my friends every single day, not being able to have a regular schedule. That all scared me. But then I realized that I was ready to open my wings and fly. I had been born to move on to greater and better things. I had been born to keep moving on with my life, not to stay still in a moment of life. I can't explain the feeling of walking through that "D" ( it represent our school Dixie High School) I mean when I just knew that I had done it. That I had graduated the greatest three years of my life! At that moment I knew that I was done with this portion of my life. And that I was truly ready to fly.

   Enough about graduation let me move on to the greatest trip of my life! Hawaii! My parents decided to take me and my sister to Hawaii for her and mine high school graduation trip since my sister never got a trip. Not only that but my other sister Tara and her husband Andy decided to join us. It was a ton of fun! it was definitely one of the most memorable trips of my life. I loved it so much! my favorite part of the whole trip was that I got a chance to swim with dolphins! Possibly one of the best days of my entire life! I loved being able to touch and and even kiss one! It was a bonding experience that ill never forget for the rest of my life.

  After Hawaii, literally less than two weeks later. We were headed to Texas, spent almost two weeks there! Loved spending time with my family and my nieces and nephews,  even though it was crazy! The whole reason we went out there is because my nephew was getting the priesthood from our church. he's such a great young man its crazy to think that he's all grown up now!! It was a blast spending time with all my sisters except Jami ( Wish you could've come! We missed you a lot! And swimming in the new pool of Tara's and getting to spend time at Cami's house playing games! It was sad leaving but it was time to head back home. I loved being in Texas its like a second home to me!

  The rest of my summer has been crazy busy, like I haven't been home for an entire week. For instance I'm at my sister's apartment in Provo watching sweet home Alabama. I love being busy but I feel like this is too much. I honestly want to go home and cuddle with my babies, tan, and get fat.  Next week I'm headed to Efy ( especially for youth) Im beyond excited. Efy is one of the highlights of my whole summer! I love it so much!

  Even though life is crazy busy I'm still struggling with the everyday life filled with pain. not a single day goes by that i don't have to take some type of pain pill. It sucks but I'm still alive! just gotta keep moving forward you know? Cant just give up on life, we all just gotta put our big girl panties on and move on with life. Just gotta live life everyday as though its your last. Can'g give up on it, there are going to be hard days, days where you don't want to get out of bed. days where you just wanna through yourself off the the edge of the world. But then your going to get a phone call or a text from someone special in your life. maybe a boyfriend, a husband, a best friend, or someone on the lines of that. Your going to sit there and listen to them and pay attention to what they say or read what they texted you. because they love you more than words. They love you to the end of the world. They will do anything to see you smile again. thats there goal in life.

  I honestly don't know where that came from but hopefully it'll help someone who reads this.
Sorry I can't keep typing I'm still a bit jet-lagged from the long airplane ride from Texas. I'll try to post more over this summer and during hair school!
  See ya'll later!!

   P.S. Here are some pictures so far form my summer!

Sunday, January 26, 2014

So Much Has Happened! Are There Enough Words?

   Well just like my tittle says a lot has happened since I have posted last! But where do I begin?! I guess I should start with Preference, yeah that seems like a good place to start! Preference is a girls ask dance, and I think I asked the best way possible! Over text, let me explain the circumstance and why I couldn't somehow come up with some big fancy way to ask. You see I was up in Salt Lake City as I am so often doing doctor visits, when my friend texted me in a panic and said that they had cancelled to asking date! I was planning on asking one of the most sought after guys in the school so I was panicking because I knew if I didn't ask that day my opportunity was gonna vanish! So I texted him! best way to with emjos and other fun stuff! It turned out great because over text you don't have to wait forever for a reply! And that is how I got my date to Preference!
   Now fast forward to January 18th. Day of the day date and dance! For our day date we went to on of the couple's houses and played games for a couple of hours it may sound boring but it was so much fun! we played " Never have I ever", catch phrase, and a type of telephone game the name escapes me. but it was a blast! Then we went and dropped off our dates got all fancied up for pictures and dinner. After that we went to the Dance of course! Such a great time with such an amazing guy! Thanks McKlane for saying yes! oh and being a good titanic role play partner :)

   Okay so now that Preference is over I can talk about my birthday! I'm finally an ADULT! Crazy!! but very fulfilling to because now I can do a lot more things like: buy lobster, rent a port-a-potty, buy spray paint, go to night clubs, sign legal contracts, move out of the house, become a flight attendee, and my favorite buy a monkey! I haven't started my 18 year old bucket list yet but I'm working on it, I'm trying to do as much as I can before I turn 19. It will happen! It's fun being 18 because of how much you can do but yet also there is a lot of responsibility.
  Lets see what else has happened? Oh this weekend I had Efy express! its a church thing for the youth that they do in the summer but during the middle of the year they hold a day where you basically have efy all in one day, you get to hear some amazing speakers and have a ton of fun! The speakers this time were John Bytheway and Brad Wilcox! If you haven't heard of them, look them up they are amazing! But the best part for me was the very beginning, so one of my really close friends we are like sisters thats how close we are, she was going to try and get off work to come down to be a counselor at this. But she couldn't well thats at least what she told me. so anyways she had one of her friends bring down something for me. I met up with her friend and she positioned me by the door facing away and gave me folded up napkin, random right? well on it, it said to look behind me, and she burst out of the door and I literally tackled her and gave her a hug! Literally one of the best moments of my life. 
So that was my weekend and past week! A lot happened but yet it was the greatest week.
   I'm learning to live with the pain it sucks though. I guess I'll just have to wait and see if this IV therapy worked. We won't know till May if it's worked. But even then I might have pain, but like I said I'm learning to live with it. There are times when it's frustrating but I just have to remember that it'll all be okay in the end. When that'll be I'm not sure and that's where I need to learn patience.
   Well it's late and I have a full day tomorrow so I better go. But guys thanks so much for reading my blog! You seriously have no idea how much it means to me! 

Thursday, January 9, 2014

Putting my own twist on something

    We'll just tonight actually I was reading something that really something that really hit home for me and hopefully she wont mind me putting my own twist on it. here is the link to her post you should definitely read it.  
     As many of you know i have been suffering non stop pain for the past almost 3 years now. It has been a rough ride for me. I have spent many night laying in my bed just wondering when all of this will be over or if it'll ever be over, any normal person would if they were in my shoes, but then again if anyone  were in my shoes i think they would fall at the first step. 
   Ive hit those low points where i just am tired and just cry and just beg God to tell me why it had to be me to go through all this. Why should I keep having to put one foot in front of the other when all I want to do is sit down and cry? Sometimes at night I have horrible nightmares of Ohio, I get phantom pain in my face and head from all the surgeries. I wake up drenched in sweat, because i cant wake up from those nightmares no matter how hard I try I just have to wait for them to be over. 
   In this post that I read most recently it said God will give you more than you can handle I guarantee it.   At first i was like what the crap no he wont. but then as I started reading it really hit home for me. It talks about how he gave you so much because we have to learn to turn to God and give our burden to him. I know that I try to do this by myself sometimes, I'm a little bit prideful with that. but we have to turn everything to The Lord. One of my favorite artist David Bowman created two of my favorite drawings called "My child" and "Peace" in both of these pictures it shows christ comforting a young woman I like to think that young woman is me because no matter what I am going through he is going to be there helping me get through it.
   Just recently I was talking well more like venting to one of my really close friends. I had been having a really bad day and i just feeling tired and done. She said something that really affected me, she said something along the lines of you probably took this because you couldn't stand to see one of your brothers or sisters to go through it. And that probably is what happened and i said something really stupid i said well what kind of idiot would choose that?! But now that I have had the chance to think it over some more I realized that that was probably true. I have to be grateful that I don't have to see one of my friends go through this, I think it would kill me to see someone else go what i am going through right now. 
  I encourage you guys to read the other post it is really good. And I'm so grateful for my friends who help me through it by the hugs and uplifting text and everything else. I'm especially grateful for my close friend don't know what I would do without her. But I think one of the greatest people to be grateful for is Christ he wants us to put our burden on him, he wants to be able to help us we all have to let him. I know I have a little bit of a hard time with it but I'm trying to be better! Well its getting late and i have to get all the rest I can, i have the flu on top of all of this other crap. joy! Thanks for reading and have a good night!
Here is the website for the other post and it's called, God will give you more than you can handle: I guarantee it. 

Tuesday, December 17, 2013

The holidays have only begun

  Today starts the day of all my family coming for Christmas! First arrival is my sister from Minnesota Ali with her two little boys! So excited to see them! Then Jami is coming down from up north. Tomorrow is what really is exciting though! My sister is coming home from her mission!!! 18 months have sure flown by and I'm so excited to pick her up! She arrives at the St. George airport at 5:51 countdown is going on the phone:) needless to say I'm excited to see my family, it gets lonely being the only one here. 
  But what is Christmas really about? Yeah we know it's about Christ but do we remember that as we spend tons of money on buying Christmas presents? 
Do we remember the sacrifice as we wrap each present and wait for Christmas to come ever nearer? Yes I admit I don't always remember what Christmas is all about but in church we read the story of the candy cane. The hook is the shepherds crook then if you turn it upside down it look like a J representing Jesus. The red stripes represent the suffering and bleeding that he did for us on the cross. The white represent the cleansing that he went through in order to be resurrected. 
We all have to remember what Christmas is really about and why we celebrate it. Think about the Saviour and what he has done for you this Christmas season. Write down a list of everything you are grateful for that has happened this past year. It's hard but so worth it! 
Merry Christmas and happy New Years! 

Sunday, December 8, 2013

Royalty and other adventures!

  So royalty! In short the assembly went great! It was so much fun! Then the dance was so much fun! And then crowning! I won!! And my friend Cameron roos won also! It was so much fun but I'm glad it over! It was really fun well it lasted! 
   Great news though! We found the problem to all my pain!! I have a syst in my face where my ear canal should be! It's in the soft tissue so that explains why it wasn't in the bone! So this past Friday I had a test done to see if it's operable or whatever. And the syst is a lot bigger then we thought so the operation is an option but we want to try this thing where they shoot some medication into it so it shrinks and heals on itself. So that my great news! The operation is such a dangerous one that we want to try this medication stuff first and if this doesn't work then we do operation. 
  Happy holidays! It's about to get crazy this next two weeks. I'm already horrible at writing regularly but I'll be really horrible with the holidays coming. Which means family! Oh my sister gets home from her mission in 9 days!! I'm getting so excited! Well I gotta pack for my choir tour! So I'll sign off! Thanks for reading and happy holidays!! 
Me and my date Caleb for senior ball!