Tuesday, July 17, 2012

Random Thoughts - Why We Need to Live in a World With Supernatural Beings.

What would happen if I became a vampire?

I can tell you I would finally not be sick. I wouldn't hurt, I wouldn't get out of breath, my heart would heal, then stop beating all together, if you follow the twilight theory. 
If you think of the True Blood theory, I could just drink some V juice (vampire blood) and my heart would heal! And I would get a nice little high. My senses would be better too.  Like in the second episode of True Blood, I would be able to smell even the tiniest piece of moldy cheese. And brighter hair, if you follow the book.  But again my heart would be healed.

And what would happen to my pacemaker? My mom and I discussed this today while watching Breaking Dawn. We both agree that it would probably be pushed out my chest and then my chest would heal. 

What about Harry Potter?

I'm sure no one but myself has thought of this, because I cant imagine anyone being as weird as I. But, what happens if a a magical family has a kid with a CHD? Or any other illness for that matter?  Can they heal them right away? They can mend broken bones, or even grow them back with a potion. So can they heal a broken heart? 

 I'm sure they probably could. 

If you turned into a vampire, you would have to give up certain things. Sleep, eating food. You'd have to get use to hunting and drinking blood. Again that is if it was the twilight version. True Blood would be nicer. 

And what about being a witch/wizard like in Harry Potter? How cool would that be? Being able to do magic? Being able to heal right away? AWESOME! 

 LOL- Anyways this is just my random thoughts for today that came to my mind while watching Breaking Dawn. 

I know it will never happen, but I still think it would be cool to live in a world with supernatural beings.

Sunday, July 15, 2012

Life List.

-- I renamed this post at the suggestion of a reader. Bucket List is a list of things to do before you die. I am not dying, I am living! Good Idea Sasha thank you!--

I've been asked many times if I had a bucket list. It's been the topic of many discussions in CHD groups I belong to so I thought I'd make one. 

1- Go to Egypt and explore the pyramids. 
I've loved Egypt since I did a project about mummies in 6th grade. In 7th grade I took an ancient history class and learned more about Egypt. It would be a dream come true to see the pyramids in person. 

2-Pet a Shark
Or at least see one up close and personal. I love sharks! Jaws use to be my favorite movie when I was in preschool. I was so sad when my cardiologist told me I cant learn to scuba dive. Which means no going down in on of those cages to see one :(

3- Get Published
I love writing and I have a story simmering in my head that I think could be great. I just can never get the words out. I can't sit still long enough to finish the story. But one day, maybe many years from now, I'll finish it.

4- Get Married
Well, I always thought I'd never get married. I'm honestly not sure I want to get married. I don't believe in divorce and I'd never want to be trapped.  But I do want to be in a loving long term relationship.  My therapist said marriage would be good for me. Ya never know.

5- Be a Mommy
I love kids! Always have, always will!

6- Graduate College
Its so gonna happen!

7- Meet as many CHD warriors as possible
I love them!

8- Move out of Idaho
yeah I know, small beans to some, but I HATE Idaho. It'll be great to move out and live on my own.

9- Read all the Books on My Bookshelf
Seriously I love reading, but I just keep buying more books. The unreads are stacking up.

If you're my Facebook friend, or no me even just a little bit, you know I'm in love with Johnny! This bucket list item may never happen but I can dream right?
So Hot!
So Talented!
He'd love me, I'm all sorts of damaged!

Thursday, July 12, 2012

July 12 - A little about my grandma

July 2009 has been on my mind a lot lately. As you very well can tell by my last few post. It was a really tough time in my life, July 2009. 
I remember July 12, 2009 pretty well. We were still in Salt Lake City, my cardiologist was trying to get me back in with the Primary Children's. I really didn't want him to, I also knew he probably couldn't so we were enjoying a short vacation of sorts. 
It was my grandma's birthday and we drove all over town to find an ice cream place to get her ice cream since we couldn't have cake or any sort of celebration. We even went to Olive Garden for her dinner. My first time there, EVER!

Anyways, I want to share with you a little about my Grandma Anna. 
Me and her, we but heads, a lot, but we still love each other. We have a good relationship and she's been nothing but a great grand mother to me. And to all her grand kids (she has 9) and to her great grand kids (she has 12). She dropped everything when my mom asked her to come to Utah for my surgery. My mom didn't want to sit and wait alone. She dropped everything again to come to Spokane when I actually had surgery. Then again to come with us to Boise when I was going to need a cardioversion. 
She's been a great support to me, and my family. 
Happy 72nd Birthday Grandma

Her and I when I was 11 months old. This is the only pictures I can find of her and I via my facebook. This isn't my computer so I'm severely lacking on the photo front.

Monday, July 9, 2012

The best way to celebrate

I wasn't sure how I wanted to celebrate today, or if I even wanted to celebrate it at all.
Do you really want to celebrate the milestone of the day you where told you where going to die? Yes, I made it to the half way mark. Past the halfway mark actually. Three years ago I was in such bad shape we didn't know if I would even make it three days let alone three years. 

To be honest, the only way I wanted to "celebrate" this day is to go back to the doctors and say to them:
"HA! Look at me now! You gave up on me, but others did not!"

But I know that really isn't the right thing to do, but still at times, I just wish I could go throw it in their faces.

But anyways I woke up this morning deciding not to celebrate, it was just going to be another day. I just decided on saving the celebration for the 3 year surgery anniversary. 

But I think God decided otherwise.

Even though it was a bad pain day, and I had to start my art reading for school, it really was a good day. 

I woke and shortly after I got my first "gift"
A little girls smile.
Let me introduce you to Mady. 

Mady is a 2 year old, who will be turning 3 in the beginning of August! Mady has Hypoplastic Left Heart Syndrome, she only had a 25% chance of surviving  at birth. Mady pulled through and is beating the odds one heart beat at a time. Mady's mom created a facebook event asking for birthday cards for Mady. I decided she needed a little gift also, and after talking to her mom, I found out she loves to color, but didn't have any coloring books. So I went to the dollar store and got her 3 coloring books and a card. Her gift arrived today. Yes, its early, but I'm very forgetful  so I did it early so I wouldn't forget, which I knew I would.  

Anyway, her mom took pictures  and posted them on facebook for everyone to see. Her smile brightened my day. How can making a little girl happy not make you happy? 

 Mady's mom asked her if she wanted to open a gift, and of course she did!
 Tearing right into it
 Her mom told me she hadn't stopped coloring since she opened it. 

My text message went off while I was looking at the pictures but I forgot about it until about half an hour later. It was my sister-in-law asking me if I could sit with the kids for a few minutes. I went right over and she was already gone and my mom was sitting with the kids. But my mom had just gotten off of work from a grave yard shift and needed to go home to rest. So I sat with the kids. 

This was my second gift. While I was sitting with the kids, and when I went over to their house later in the evening, Chase was all about the kisses.
I was there for a combined total of no longer then 20 minutes and got about 8 kisses. That he gave willingly!

 My mom asked him to hand me a $20 so I could go get lunch and he was so good at it she decided to give him a dollar for himself. He thought he was suppose to hand it to me.
Once he realized he could keep the dollar he was all over it. He wouldn't put it down even while watching Alvin or sharing a milkshake with grandma. 

Those kisses from Chase, Mady's beautiful smile, they made my day great. 
I am so greatful to have made it these three years.
I'm so greatful for day's like this.  


The Day I was told I was dying.

Three years ago today. Well okay, tomorrow. I'm writing this on Sunday night. Words just come to my mind and I need to write them down before I lose them. But I'll be posting this sometime Monday.

July 9, 2009
I was sitting in a Primary Children's Medical Center exam room waiting to see the cardiologist. I had just had a bunch of blood work, an EKG and two echo's. I had also talked to the surgeon who was suppose to do my surgery the next day. Things really didn't go as planned there. I yelled, and ran from the room. Which led to a fight with my family as well.  I was going a little over board because I was so upset. My brother made a good point. 

He said to me "You're sick yes, but you're not the sickest one here"

Which brought be back down to earth, yes, I wasn't the sickest one here. 

Anyways we were in the exam room, and I was wiping away the remaining tears. Waiting.  The doctor came in and began to tell me how sick I was. The words "severe heart failure" and "drop dead" where tossed around. In the end, she told me I only had 5 years to live without surgery. And they wouldn't do it. She told me I couldn't call my surgeon and jackass and expect him to still do my surgery.

My brother stormed out of the room looking like he might punch someone. I began to argue I think I said something like "So you're gonna let me die?"  But my mother asked me to leave the room, go calm Dan down. So I left the room, not really wanting to, I was angry and wanted to give her a piece of my mind. But I left. 

As we were walking to the car, or well storming to the car afterward my mother told me that they gave a few more reasons after I left. She told my mom they where terrified I would have a mental break after surgery. They where scared I wouldn't follow the rules and take my medication.

Yes I know I have a temper (this was before I knew about my borderline personality disorder) and I knew I had bipolar disorder, but what did they see in me that scared them of a mental break. Was I really that bad?
And yes I knew there was a point in time where I gave up on taking my medicine. All I wanted was to be normal. But I was really sick now, and I know that me stopping them is what caused my heart failure. I know I was the reason I was dying. I would NEVER make that mistake again. EVER.

So we got to the car and were driving back to our hotel and I remember trying to call my cardiologist back home in Boise. But since I was out of state it had to have the 1 in front of it, so I looked at the number and repeated it, over and over in my head. I dialed and waited for an answer. I didn't even hear what the person said when they answered, I just began my tear-filled ramble. I went on and on telling him what happened, all while bawling my eyes out. When I finally finished In took a deep breath.

The guy on the other end who was quite patient and listened to my whole speech finally spoke.
"Okay what do you want me to do about that? This is ___ (I don't know some guy) at some plumbers place."

I accidentally miss dialed and called the plumber.
"Oh I'm sorry" and hung up. 

We got the laugh we all so desperately needed. Poor dude had to listen to some crying chick. I apologize to whoever he is. We went back to the hotel and made a few calls. I called my best friend, or it might have been texting. Either way she talked to me, called them names with me. Agreed that it was discrimination. She made me feel better. That's what best friends are for right?

I got on Facebook and "met" Ramona. Most of you know about Ramona and how she helped save my life. But if you don't read it here. My cardiologist finally called, I refused to try calling again, I didn't want to call another plumber. But either way he was told what was going on. He told me to stay in Salt Lake a few more days while he tried to smooth things over. When he couldn't smooth things over he got me set up with a surgeon in Spokane Washington and begged me to not call him a jackass. 

July 8, 2012
Tomorrow it's 3 years since that day and so many things have changed.

Like my doctor asked me to, I did not call the new surgeon a jackass. Me calling the surgeon at primary's a jackass actually turned out to be a good thing. It saved my life. Read how it saved my life here. 
My surgery was done two weeks after the doctors at primary's told me I was dying and they refused to do surgery. I was in pretty bad shape and though my cardiologist told me it wasn't anything that need to be rushed, he got me into surgery pretty fast.

 It went really well. The only issues I had where plurell effusions that just kept coming back until they finally got the right dose of lasix. I lost 19lbs of water in 2 days when the finally figured it out. They paralyzed my vocal cords and everyone joked about how excited they where that I couldn't talk. But I talked so much it came back much faster then anyone thought. They also cut a nerve in my leg when going in with the heart lung machine. When I woke up my leg/crotch area was so unbelievably swollen and painful. But they got my pain controlled well and shortly the only time it hurt was when I tried walking. And it would shake so bad. But it went away fast. 

I've learned so much about life these past three years. I've learned that I did need help and it was okay to ask for it. It wasn't a sign of weakness, it was a sign of pure strength. To admit there was a problem and get help it was a good thing and changed my life. I got on anti-depressants and anxiety medications. I would stay on them long enough to get better. But then I thought I was fine and would quit them. Finally I started seeing a therapist regularly and taking my pills daily. I learned stopping them just made things worse. I got my diagnosis of Borderline Personality Disorder, along with my Bipolar. Also possible ADHD.  It's really changed my life. I'm happier now, and my mood swings aren't nearly as bad. The ones around me are happier too. I'm not mean to them anymore. Well not really as often, I still have my bad days, but they are fewer and far between. My family likes seeing me happy and I like it myself.

I've had nightmares and insomnia since surgery. Melatonin and The Simpson's DVDs are my best friends at night. The nightmares are less often, but they do come, and they are bad. I'm always exhausted but I've learned to live through it now. 

I'm in college, online, and LOVING it. Well not this art class I'm in but in the end, I will have my associates degree. I love having that to work to. A goal. Something to work towards is just so fulfilling.

To this day I still don't know exactly why I called that surgeon a jackass. Yes he was being one, but I wasn't going to say anything. I didn't know I was saying anything until it was out of my mouth and I was halfway down the hall. I can only assume it was my dad and uncle Mitch up in heaven protecting me. You see for some time before surgery I had being "shadows" I guess you'd call it. But they where in the shape of people. I would see a shadow of a guy sitting in my dads lazy boy. And a shadow of a cowboy (my uncle was the cowboy type) leaning against the wall. I've seen each multiple times before surgery. I know some people don't believe in stuff like this and will say its just my imagination playing tricks on me. But I believe it was them. I haven't seen either since surgery. 

As much as I wanted to see my father, when I knew I would die that's the one thing that was keeping me going. I was going to see him again. And as much as I wanted to see him, I'm glad I'm still alive. In the past three years amazing things have happened.

 I was baptized, and I can share my story and minister to others. My nephew was born, and a little over a year later my niece arrived. Being an auntie means everything to me! I love those kids more then ANYTHING in the world. I have a bunch of new diagnosis's, but I'm learning to live my life to the fullest. I love being alive. I cant wait to graduate and hopefully go back for another degree. I cant wait to get married and adopt kids. I know God gave me this heart for a reason. And God NEVER makes mistakes. I don't know exactly what he has in store for me but I know it will be good. I know I'm going to do big things. I've almost died so many times, yet there have been so many miracles to save me. I know I'm going to do great things. 

Right now that is helping CHD parents and other CHDers. I've been told I inspire them and give them hope. Maybe that's what exactly what God wants from me, maybe there's more. I'm glad I can fine out.

This post was really hard to write. Harder then I ever imagined it would be. But I knew it was time to share. The story was just in me and  I had to get it out. It took me quite a while I stopped many times. A few times to wipe away the tears, once to talk to my brother, Once to turn on the fan (stupid heat.) Once because it was med time.

Like I said, I'll never stop taking my medications again. I've only missed a few doses, those times when you accidentally forget or the pharmacy doesn't fill things on time. Or the one time when my niece was being born and I was just so excited I left the house and was halfway to the hospital (which is over an hour away) before I remembered.

And currently there is no sign of heart failure, but its just a matter of time before it's back and I need a transplant.

I do the best I can and I'm quite proud of myself. These past three years have not been easy. Not even a little bit. But the good times defiantly make up for the bad times.
 Me and the greatest nephew EVER! Chase David

 Me and the greatest niece ever, Alyssa Faye on 4th of July.

I love harder, 
Laugh louder
Enjoy more
Regret less
and dial the phone more carefully now.

I can't imagine not being there for their lives.

Friday, July 6, 2012

Emma's Story

Emma and my dad share a date, just 10 years apart. I followed Emma via her moms facebook page for a long time and became close with her mom. I was devestated when word came that Emma passed away.
This is her story. Her mom asked me to make a video and I did the best I could.
Love and miss you Emma

3 Years - About a Girl

This post has been a long time coming. I've told bits and pieces of this story, but I think its time to tell the whole thing, since I've passed the half way mark. 
Three years ago this Monday, July 9th,  I was given 5 years to live, and a little girl was born. 

I knew I was really sick, but I didn't realize how much so. We where in Salt Lake waiting for my second open heart surgery (5th heart surgery all together). It was suppose to be the next day, but that morning I got the call from Primary Children's Medical Center saying they moved my surgery date. All because I hadn't had my pre-op testing, which no one told me I needed or when to get it. So I was angry. 

My mom, brother and I got in the car and went down to get the pre-op testing done. It started with blood work and they popped a vein. I then went to talk to the surgeon. He was a complete jackass, and I told him so. Read about that experience here.

Ramona at the park

All the while, a family I never even heard from was having there baby girl, Ramona. 
I got 2 echos and was met by a cardiologist. She told me that I was in severe heart failure and could drop dead any minute. She then proceeded to tell me without surgery I only had 5 years to live, and they would no longer do the surgery. In the long run it was a good thing, but at first I was upset. I was angry. I felt like everyone was giving up on me and I would die. I decided that if everyone was giving up on me, I would too. 

But then I got to the hotel and logged onto facebook to find I had a message. A man named Rudy, he found me on some CHD group, and had questions. You see his daughter Ramona was just born, with my same defect. It was then I realized I couldn't give up! I had to fight, and survive to show Ramona, and others, that their life can be amazing!

I followed Ramona's story closely and found out my surgery would be down at the hospital she was born at. Later I found out we would have the same surgeon. The man who would touch my heart, would touch hers too.

the first time I met Ramona in person

I didn't get the chance to meet Ramona before surgery, but I decided to come back to the hospital for my 1 year heart surgery anniversary. So in early July, shortly after Ramona's first birthday we finally got to meet. At starbucks. Me and her mom Vanessa got along great and she even let me hold the girl who in a way, saved my life. 

My mom and Ramona

My mom came with and fell in love with Ramona instantly. She was a sweet little girl who was willing to be held by everyone. She smiled and just played around while we talked. She even tried to eat my moms necklace.

me and Ramona at the park

We decided to do a picnic in the park the next day for CHD families. I was excited to meet tall the families, these kids mean everything to me. They let me know I'm not alone, and I do what I do for them. But I was excited to see this special little girl again.

I even got to take her on her very first slide ride.

Me, Brayden (TOF) and Ramona
Me and Jethro (Ebstiens Anomoly and Pulmonary Atresia)
Me and Angel Seth's family (Seth passed from HLHS)

I met 4 amazing heart families that trip (plus many more throughout the years) and it was all because Ramona made me not give up. She is a hero to me. I said goodbye and went home. I still followed her story closely and sent her gifts. And in February of 2012 I got to see her again. I decided to come home through Spokane after baby Adam's celebration of life. 

So we met up for breakfast. It was a really quick visit but I was glad to be able to see her again.

Me and her mommy talked and she played with her toys and even ate! The first visit she had a Gtube so I was so proud to see her eating. 

She was a little ball of energy playing under the table and talking. So different from the baby girl I held who hated grass and was only scooting around. We took so many pictures, cause she told me too. All the while her mom was telling me how she had a cath coming up in preparation for her fontan.

I love this girl so much, and am proud to see how great she is growing up.
She has a great personality. And we had to take so many pictures cause she wouldn't look. This was the only one we could get of her looking and smiling!

I love this girl, and her family. Her mom Vanessa and her dad Rudy though we haven't met yet because he's always working. Even her baby sister Ofelia.  This family, and this little girl will always have a very special place in my heart. They saved me. 
They weren't the first heart family I met, but they reached out at just the right time.  Rudy didn't know it when he was messaging me, but I needed a reason to go on. And showing Ramona, and all the other kids, there is hope, was my reason. 

I love all my heart brothers and sisters. But this girl is special. 

I just want to let you know Ramona came through her cath and fontan with flying colorings!
Ramona at home after the fontan with the gift I sent her

Thank you for letting me be a part of your life baby girl, even if it's just from a distance most of the time. 
I love you. Thank you.