Saturday, June 29, 2013

Even if the Healing Doesn't Come

Ok, I know I've been quoting song titles a lot. I just have so much on my mind, a wake up call.

So first of all, I had my incision check appointment on Tuesday. Leave it to me to not stay in bed during recovery and rip open part of the incision.. anyways, it's a little infected, but they taped me back up and told me to come back in a week if it wasn't better. I figured out where the monitor is located, and quite frankly, I don't like it. I can feel it and it hurts when I touch it! I'm still very iffy about doing certain things, still can't jump or run. Even bending down the wrong way makes me nervous. I can finally sleep on my stomach again though!

Here's the deal. I have got the greatest friends in the world! I know I talk about them a ton, but since I can't be home with my real family, they have stepped in and become my surrogate family. I've even been told that there's probably not a person on campus who doesn't know who I am! I've gotten better physically, well better as in back to my pre-surgery state. But mentally and emotionally, not so great. I've always had this problem, but it never occurred to me just how serious it is.

I don't know what happened, but suddenly my heart was freaking out on me and I felt that I was just getting hit with so many bricks and just couldn't carry those bricks anymore. It's not easy to stay strong and play normal when you wake up everyday just praying for enough strength to get you through the day without passing out. Or praying for peace of mind not worrying that your heart is going to kill you suddenly. "What if I'm working the zip line and I just suddenly pass out?" It wont happen, I have such amazing and understanding co-workers and supervisors and they always make sure I'm ok, and even though I've lied in the past and said I'm just fine when I was so dizzy and my heart was racing, I've come to terms that when it comes to work, I have to know and stay within my limits for the safety of others.

So on Monday night, I decided at midnight that I had a lot of extra energy, so just me myself and I went on a midnight hike up 9 mile mtn. I had planned on just staying a few minutes, so I came back to my room, then guess what?? I realized that I left my phone at the top. So in just one night, I hiked a mountain twice, and I even got to stay up and watch the sunrise! And another moment when I was proud of myself was yesterday. I love working the zip line! It's very physical, and since I'm not allowed to belay again for a while, I've been working at the ladder. Yesterday, one session was completely full, so it was literally climb up the ladder, get the person unclipped, climb down the ladder, yell commands so the next person could come down, move the ladder to the other side, and climb again to repeat. Not one break, it was scorching outside, and I had no water since I was just a fill in, and I wasn't prepared. But I even got a compliment from my co-worker who was at the top. He told me I was killing it out there and I looked great, he had to question whether or not I was completely healed or not though. I love proving that I actually have strength! 


 But getting back on track, I just felt horribly depressed and overwhelmed suddenly that day. I was even going into that state of mind thinking myself as "worthless" and thinking that maybe it would be better if I could just die now. Before it got out of hand, I called my bff and she came over. We stayed up about 6 hours that night just talking and crying. I spilled everything I was terrified of. I was scared to death when I had my procedure done! Some of those questions they asked.. "Would you rather be buried or cremated?" "Since your family isn't here, who would claim your body?" "Are you willing to be an organ donor?" and the anesthesiologist explaining everything that could go wrong.. "We need your consent to accept a transfusion, because you could bleed out during the procedure." "Do you have dental insurance? Because there's a chance that you could stop breathing and we would have to shove a tube down  your throat." I explained open heart surgery and how it's done. After talking about how nobody is normal, every trait we have is hand chosen by God, the question I asked really hit her hard, and I felt so bad. "Why did God choose me to be sick?" At that point she said she didn't know, collapsed onto my shoulder and was crying even more than I was and I have never seen her cry that much. I asked her why she was so upset and the answer she gave me just broke my heart. "I just wish God would heal you." She was so emotional as we talked about why I choose to live fearlessly and taking risks, and how the only reason I'm not ready to die is because of how it's going to effect my family and friends. I got a smile though when I said that God made me a sapphire so I could fight this fight! She reassured me that I'm not alone in this battle. God gave us friends to help us carry our burdens. Even when I was just overwhelmed and crying about how nobody understands, she told me she was feeling the emotional pain. I never wanted her, or anybody to feel any of it. But our talk made me realize something.


I've been super selfish. It does affect me the most, obviously, but I had no idea how much my being sick hurts my friends. Even saying something really sarcastic, like after a long day of work, "ok I'm gonna go curl up and die now." Of course I mean nothing by it, but it hurts them because it's a reality that could happen, and they don't want it to happen. After mine and Laura's talk, and realizing how much it affects those that I'm closest to, I've decided I'm going to do something drastic. I'm going to slow down a little bit and take care of myself. By taking care of myself, I mean listening to doctors, not ignoring pain, not insisting that I'm fine when I'm laying on the ground fading in and out desperately trying to stop myself from completely passing out, and staying in the limits. I just said I'm not scared to die, I never said I wanted to, or that I was ready. Mine and Laura's SMR mom, Kathe, even said that we were going to be best friends for life, and that she totally knows that we're going to embarrass our kids and husbands with our craziness. I mean, I still have a lot of traveling to do before I settle down, or even if I ever do. But it's definitely very hopeful thinking about the future! Although as of right now, I could definitely see myself settling down here. Texas will always be number 1 to me, but Colorado has welcomed me with open arms and become home.

Another thing is weighing heavily on my mind tonight. After listening to my other bff talk, it made me realize how much more selfish I am. The talk was basically "God can't heal everyone, it would make the world too easy." All I've been doing is praying and asking friends to pray for healing. Some family back home even spreads it around to pray that the doctors find nothing. Honestly, praying for nothing is not what I need. I know and the doctors know there's something serious wrong, and not finding anything only slows down finding the right answer. It's frustrating to me, and to my doctors. But honestly, she got me thinking. I know I always complain about how much I hate living like this, and how much I wish I was well enough to keep up with the friends here. But honestly, I'm starting to come around to the idea of being this way. It might sound very prideful, but it absolutely positively makes me and my heart smile when I get comments on how strong and inspiring I am. It makes me want to keep going and fighting. Every time I'm introduced to somebody new by friends, it usually starts out with "oh my gosh, this girl is amazing!" One of my new but close friends here, Heather, has her story about me that she likes to share with everyone. I don't remember this at all because I was just a few hours out of anesthesia and drugged up on morphine. But apparently when I got back to SMR, she asked me how I was doing, and she had I had the most pouty face and said very angrily "they cut me!" If I can inspire others and make others laugh by just being myself, maybe I don't have a big purpose in life that I need to fulfill. Maybe my purpose is to inspire, encourage, and bring laughter through a dark situation. I honestly don't know. I just need to stop praying and hoping for healing, because I don't have control. Maybe I wasn't meant to be healed, as much as my best friend wished for it, I don't think it'll happen. I'm just learning to accept it. I think for the most part I already have, it just means that I have to live life to the fullest and make each passing moment count for something good. 

                                               
                         Heavenly sunrise from my 2 in one night hike!

Sunday, June 23, 2013

Live Like You Were Dying

I always knew from the moment that I could understand that I had a heart defect, that my life wouldn't be normal. I never saw myself growing up, I always somehow had the intuition that I was going to die young. Now that intuition has become a reality. I'm not saying that I'm going to die, just that it's very possible now. I have a ventricular tachycardia caused by my leaking pulmonary valve. I was struck with the news that I was about to go into heart failure back in November, but then told that if I kept up with the specialist and took care of myself, it wouldn't happen for a long time. I never really thought much of it.

 Now fast forward to May. I was referred to an electrophysiologist after numerous ER visits and being drugged up for anxiety and having nothing work. I was told at that appointment that because my right ventricle is enlarged, due to the leaking, it's causing an abnormal heart beat. I was not allowed to leave Colorado, they scheduled a catherization procedure immediately. He told me straight out, because I've been having dizzy and fainting spells at the same time as the abnormal uncomfortable racing and pounding, it can be fatal and next time could be cardiac arrest. I honestly wish I hadn't been alone at that particular appointment. I usually always have a friend or 2 with me, and my big stuffed pink unicorn named Cuddles. In fact, all the cardiology doctors and nurses know me very well. My congenital specialist even told me she never knows what to do with me. Haha, I guess that's a good thing? Anyways, getting back on track.. I got the news and honestly the first thing that came to mind wasn't "I could die at any moment" it was the fact that I wouldn't be able to return to camp this summer. I was crushed. Death has never scared me, in fact I don't mind dying because I know that I'll be in heaven and I'll get to run and play with my brother and never grow tired or exhausted. Sleeping on the clouds would be very cool too! 

I had my procedure done just a little over a week ago, they did the catheter to see if they could find the abnormal rhythm, but they couldn't. So now I have a monitor in my chest. They cut me open just for a little device that may or may not help find the answer. I wasn't scared of the surgery. I was ready to get up and move around just minutes out of anesthesia. I wasn't allowed to move, but do I follow directions? Most of the time, no. I was trying to get up and walk around, and I had 2 nurses that had to restrain and hold me down so they could sedate me. I did throw a bit of a tantrum, but I was drugged, confused and tired of hospitals at that moment. Worst. Feeling. EVER! Not being able to move and having to be still. Not being able to do normal things and having to have the nurses spoon feed you. I was a little upset and overwhelmed because now I'm definitely not able to live a normal life, not that it was ever normal to begin with. I just want to be able to keep up with my friends, climb 14ers, go for hikes and not hold everyone back. I want to travel and be able to play with friends and not have them be careful around me. I'm tired of the "are you sure you can handle it?'s" I don't want to wear my best friend out anymore because she has to step in as the role of mom/caretaker. 

I was supposed to be on bed rest. The first night I was home, I couldn't even walk. Every little move I made felt like my incision was being ripped apart. I had to have my bff spend the night because I wasn't allowed to be left alone. If I moved my leg the wrong way, the vein they stuck the catheter in would cause me to bleed out. The next day, we spent the night at our other best friends house. I did good and stayed in bed watching movies, but then when they decided to go for a hike, I decided to take the bandage off my leg. BIG mistake! I wasn't supposed to be left alone, and I passed out and started bleeding. So there I am fading in and out on the bathroom floor, and next thing I know, my supervisor is there. It was a scare, it almost turned into another ER visit, but thank God I was able to talk to the nurse. So that afternoon after the scare, we had a water fight. I LOVE my friends, I mean I love them no matter what, but the fact that they let me make my own decisions and trust that I know my own limits, makes me so happy. If I were back home, I'd probably be locked in my room and miserable. So that same day, I got to go to a concert! I went with my bestie and some other staff, and they were so nice and helpful, I ended up having to climb 65 rows of stairs and I was miserable by the end of the night, but I'm glad I went. So for the next few days I did take it easy. Still had to have my friend help me walk around a lot (you can see why I wore her out now). But I started getting around on my own gradually. 

So today is 11 days post operation. I'm still very sore, my leg is very bruised and swollen still, and the chest incision hurts on occasion. I have never been so stir crazy in my life! A few days ago the bestie called me up and asked if I wanted to go play at Winter Park. It was SOOO awesome to get out and be in the sun! We got to play on the alpine slides, explore at the top of the mountain and have a snowball fight! She understands me, but still makes sure I'm ok and is willing to adapt in certain situations with me. That's probably why she's my best friend. But I was supposed to go back to work today, I haven't been able to get a release from the doctor, so because it's a liability issue, I'm not able to work without that note. It's very frustrating, I'm ready to go back to work! Right now, I've been cooped up and held back so much that I just want to go and run up a mountain, preferably a 14er. You can't keep a sapphire on bed rest! 

So anyways, what's the purpose of this blog? I honestly don't know myself. When I was 17, I was in the hospital going through numerous tests and just so overwhelmed. I wanted to be back at school with my friends. Then I heard the song "healing rain" by Michael W. Smith on the radio. That has been my go to song anytime I'm in the doctors office or the hospital. It's going to be a long road, I'm not off the hook yet, the monitor just means that they'll be able to (hopefully) get an asnwer soon. I can't say it's all going to be ok, as much as I wish I could. I just know that it's in God's hands, if that means finding the answer and getting all better, or not finding the answer and dropping dead, it just means that it was my time. I'm not scared at all. Either way, it's not quite a journey, but definitely a long road that I might need a little bit of support on. I just want to share, apparently I'm a little bit more loved than I thought, and I've had people ask me how it's going. So I can update while I'm miles from home. 

So I've had a few "go to" songs this past week. I was very discouraged because of things I would no longer be able to do (stunt flying). So for a few days I just played Martina Mcbride's "anyway" over and over and just cried while no one was around. Today, I couldn't stop listening to "live like you were dying" by Tim Mcgraw. Maybe it's the death of my cousin who was close to my age, maybe it's the reality that I could fall and not wake up at any moment, but that song just seems to be my philosophy on life right now. I want to sky dive, I have been rocky mountain climbing, but my goal is the highest peak in Colorado. I want to stay close to my friends, I want to master the terrain parks on my snowboard. I live without fear, and even though I really don't appreciate myself most of the time, that's one quality I actually like about myself, being fearless and perseverent. I've been called inspiring, incredible, and amazing. WHAT?? I didn't know just living my life would inspire my friends! There's a reason I'm so stubborn and hard on myself. I know my time might be a little bit sooner than almost everyone, so I want to be able to accomplish things. I drill sargent myself on hikes. "Don't be lazy, go this many more feet and THEN you can have a sip of water!" there's a reason for that. I know I can do it. The words "cant" and "never" don't exist in my world. The more I push, the stronger I get. I might be paying a price physically, but mentally, when I get to the top of that mountain after passing out, getting sick, having to use my inhaler and struggling to breathe, the feeling that I was able to do it is so much more rewarding! I've never backed down and gave up, I would have beat myself up with negativity if I had. My friend says that I wont back down on a challenge, and she's right. I plan on keeping it that way. 

So don't worry and please don't tell me that I can't do something! Those words hurt worse than any IV or incision. I was told that I shouldn't go on a staff hike up the smallest most mild mountain because I would hold everyone back, and that was a major slap in the face, but guess what? I was able to go and I didn't get tired and I didn't have to break as much! I'm ok though, I promise I know my limits and I'm following doctors orders (for the most part). I feel a lot better, and if I see a hospital or ER again, it'll be way too soon.    But I can't leave for awhile, so I would really love to have visitors! 


It begins.... (Laura gave cuddles an IV too) 
             
Water fight!

3 best friends, Laura, Arianna and me!

Me and my bff Laura, she was there taking care of me from the day I got home.

Hillsong concert at red rocks, day after surgery.

Resting like a good girl. They let me take Winter into the OR with me, she's been my inspiration!


Play time at Winter Park!



Me and Laura on the alpine slides!

"But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary. They will walk and not be faint." Isaiah 40:31