Friday, December 3, 2010

My pacemake saved my life

So today, our town put on a the festivle of tree's. A christmas thing we do every year. Where people can put booths up and sell home made things.
Today also gave me the chance to talk to many people I havn't seen in a while. Including the cop who responded during my accident.
Today was a good day, pain was bad, but all in all, I had fun. Saw friends I havn't seen in a while. I got hugs from so many people. People saying we've been praying so hard for you. How are you doing? You look wonderful and all that. I got to show off my scars. All in all a good day.
Near the end of the day I talked to the cop. My mom is a 911 dispatcher so I know all the cops in town. We are like one big family. The cop who showed up at my reck though is an especially close family friend. We do game nights all the time, and I babysit his kids.

So we where talking about the night. He was telling me how very gray I was. How I was shaking so hard. He told me how he went to talk to me in the ambulance to tell me my mom was on her way and they where cutting my clothes open and he got a sight he didn't need to see. He told me how I was covered in blood. He was looking at all my scars going wow! I thought it would be so much worse, there was so much blood. He told me he didn't think I would make it to the hospital.
But I learned something earlier. I shouldn't have.

My pacemaker saved my life. From all accounts I should have died. They where so sure I was going into shock. Shock can be a very deadly thing. But my pacemaker was there. It kept my heart beating. Its the reason I lived.

Sunday, October 31, 2010

CHD Memorie

-- written a few months ago--

I tend to supress memories. Well I think I try to without really wanting to or knowing I am doing it. I guess there are just some memories I dont want to remember.

A memorie came back today.

I was in highschool. I had gym at the end of day, last class. I didn't want to be all sweaty all day. One day, near the end of the school year. It was really hot outside. I was sitting on the bleachers in the gym. The teacher was rounding up everyone to go outside. I wasn't going to go. It was to hot for me. I was already feeling a little sick cause of the heat and my heart. So I wanted tostay inside work on homework. I knew I would still be hot but it would be better then being outside.

I don't know why, the principal came into the gym. My teacher was fine with me staying in. In classes before we actually talked about my diagnosis. She googled it to learn more. She was very good with me. Whenever I needed to sit out or anything, she was awesome. But when the principal came in he saw me sitting on the bleachers. I was waiting for them to leave and then I was gona go to the library to study. But he saw me sitting there and got pissed.

He asked me what was happening. Why wasn't I with my class. I told him I wasn't going outside. It was too hot. He told me no "YOU HAVE TO BE WITH YOUR CLASS!" I told him "NO" so he told me, if you arn't going to go out with your class you need to get out of my school.

I was kicked out of school. For staying inside because of my heart. I pretty much ran to my locker trying no to cry. Once I got out of the school I just couldn't stop the tears. I cried. I drove to my moms work, bawling. I told her what happen. Boy did she call the school and yell at them.

I never got an apology. I don't know what I reacted the way I did. I hated school and would have loved to leave early, wither permission. But it hurt. It hurt so bad to get in trouble because of my heart.

Thursday, October 21, 2010

A cardiac update - Am I doing the right thing?

I have a question for you, but that will come later. Right now let me share with you a little about my cardiology appointment today.

8 AM in Boise, still kicking myself for that one. We left at 5 am, and where still late. Only to be told that when we got there we where in the wrong office. LOVELY!!
So we drive to the next hospital. Took maybe 10 minutes. But now we where even more let. Then we had to stand in the huge registration line, when the lady heard how later I was (by then it was 8:45) she bumped me in front of everyone else. Man, talk about evil stares.

So I get there and Dr. Emge's nurse is waiting for me. Apologizing saying they where getting a new secratery cause the one they had was slacking. Yeah I knew that, I didn't get a reminder call, and I went to the wrong hospital. Yeah someone is slacking. But I was glad they apologized.

So she gets me weigh and I turn around and almost walk right into my cardiologist. He look and me was like "HEY!!! you look so good!! How are you?" So me, "thanks I'm good, but having some issues with tachycardia. And theres this pain I want to talk to you about."

So he follows me into the room where the nurse does the vitals. My blood pressure was to high, not good. They where concerned and said they would do it again before I left. They want to keep my blood pressure low, because with a single vent if you blood pressure is "normal" or high, it works your heart just to hard.

So I start telling Emge about the pain. Explaining to him about how when I was in the ER they stopped my heart. A heart attack. When your heart stops, that's a different kind of pain. A pain like no other. And then I began telling him about these recent pains, how they had a hint of the heart attack pain. About the pressure how it went up into my jaw. I told him it was the worst pain I've ever had. I told him how my aunt freaked out over how pale I was.

He said it probably isn't my heart. He then left so they could do the echo. My echo tech was nice. She actually called herself an echo nerd. She would point out things and taught me more and more about my heart. I love learning these things. She told me how excited she was to see me because she did an echo before my last surgery and was happy she could see what its like now, after surgery. She also told me she loved seeing someone my age, because most don't make it this long.

She told me how my heart was amazing, its quite shocking to them sometimes. She told me how I was brought up at ANOTHER (apparently my heart has been brought up a lot, its just that random) conference. Because I have a shockingly big pulmonary sinus. Nothing to worry about. It's just bigger then they've seen before. It's not something people usually see.

That made me smile. Yup that's me, always shocking the Drs!!!

Dr. Emge comes back in and tells me my heart looks amazing the heart function is doing so well. At my last visit he wanted to see me every 6 months for a few years, this time he told me he's so impressed by my heart that we can go to once a year!!

YAY! You don't know how happy that makes me. So then Emge does the normal listen to the heart and checking pulses. And I bring up the pain again. I ask him, what could it be? What should I do? The pain is horrible.

She he then begins pressing down on my incision asking does this hurt? Does this hurt?
OF COURSE IT HURTS!!!! Your pushing down on my bone, pretty hard, thanks for that doc. So he's like its just your muscles. Healing and scar tissue. Don't worry about it.


He then tells me that he's gona talk to Dr. Cadman my pacemaker doc and having him interagate my pacemaker and see if they can find the tachycardia I was talking about. If they can't they will give me an event monitor. I got my blood pressure again it was on the border of normal and high. Not to bad.

And then I got to go home. And in the middle of the hospital entrance I just broke down. Pretty much they are telling me I get to live in pain for the rest of my life.
I'm praying so hard that DR. Cadman see's the tachycardia that I'm talking about. I know it's there!!! I KNOW IT IS!!!! I'VE FELT IT AND I'M NOT LYING!
I'm so tired of everyone looking at me like I'm crazy.

Even if they see it and say other there's really nothing we can do about it. Well okay then!! that doesn't bother me, at least they see it and know I'm not lying. WHY would I lie about my heart anyways???

And so here is my question for you.

Am I doing the right thing?

Last time I had chest pains, before my surgery, I ignored them. I didn't go in cause I didn't want those looks. The ones that say "lier!!!" or the stop complaining little girl looks.
And that turned out to have been the worst possible thing to do. I almost killed myself doing that! So now, when I have the chest pains I get scared. What if it's happening again?? But everytime I go in there is never anything wrong.

Should I just stop? Should I give up? Should I just do the once a year thing and just live through the pain and ignore it, hope it isn't something bad?

My doctor also told me about a patient who reminded him of me. I won't go into details, but he randomly threw out how this man now has a job after his surgery.
WELL OKAY!! Fuck dude I get the picture.
But wheren't you the one pushing for me to get disability? You, and Mom, and everyone else are like no! Dont give up fight for disability.
But I keep getting these little side comments like, you need to get a job, you need to do this, you need to do that, Oh i'm taking care of you!

Should I just give up on disability??
Should I just give up on everything?

I'm not sure how much more I can take of this.
Of all the little side comments.

Sunday, October 17, 2010

10 years ago today. Meet my hero

Ten years ago today. You've been gone 10 years, today.

I feel I need to share my dad with all my friends today, but I just don't have the strength to write this story. So this is a post I wrote last year.

I've been writing a lot CHD awareness and stuff having to do with CHD. But I think today I need to do something different. I need to introduce my hero to my world. No one in my CHD world knows about my hero. They all call me strong, tell me how strong I am. But I need to introduce them to the person who taught me how to be strong.

His name was David Alan Goffard. And he was, is, my daddy. I don't remember a lot about him. Really nothing from when he wasn't sick. I want to say I was 6 when he was diagnosed. But I don't know for sure. When I was young my dad was diagnosed with leukemia.

I remember the day when my dad thought he might be sick. My mom, brother and I where in the living watching television. My dad was upstairs watching television. We where sitting there and then dad came down the stairs. You could see the stairs from the living room. Dad came down just enough to so we could see him and said "Carrie I think I need to make a doctors appointment." or "Carrie remind me to make a doctor appointment." Not exactly sure which one, but I remember that he came down and said something along those lines. It don't remember much after that, except me and my brother where dropped off at my grandma's house while they went to the doctors. It was just suppose to be a routine check up. But we got a call saying they where taking him up to the hospital. That's really when this journey started.

I don't remember much and I really hate that. Dad was in an out of hospitals getting tests and chemo. My brother and I always stayed with grandparents. Sometimes my dad wouldn't allow us to come see him because he didn't want us to see him like that.

One specific memory, It might of been the day they found out, or one of the other appointments but I remember my grandma taking us home because they where going to be later then they thought. I just sat staring out the window eating cheeze its.

This journey wasn't a very easy one. My mom had to go back to work to help pay bills. We had to rent a house in Wisconsin to be near a better hospital. I remember there was this boy, his family was renting the house across the street. His mom was sick. We hung out a lot we road bikes, went and played basketball, be collected sakada bug. We rolled down the big hill behind our rent house. We where there off and on for a few years. I remember we came back to the house one time and I found a pair of sunglasses I lost before. We did a lot in that house. That was the house in which I learned my grandpa puts yogurt on his salad. That's the house in which I got athletes foot from the shower. That's the house where my grandma introduced me to Jesus. Which is good, I really needed him then, now and forever.

This journey was hard. I can only imagine how hard it was for my mom. She had to hold the house together while both my dad and I where sick. She had to arrange cardiologist appointments, oncologist appointments, emergency hospital stays and visits, she had to work, and feed us, and make sure we went to school. She had to break up the stupid petty fights my brother and I had. She held it all together when anyone would understand if she fell apart and ran away. And that is the reason she is my second hero.

My life with my dad was a blur of visiting hospitals, trying to beat each others high scores on the hand held yahtzee. A blur of going to the movies, hospital food and riding the bed. A blur of dad being healthy then sick, then healthy then sick. My life with my dad was a blur of laughter, love, tickle monster, horror movies, and him yelling at us to clean up our rooms. My life with my dad was a blur of my mom changing IV's in the living room, oh him laying in his hospital bed in the living room. Of him sleeping downstairs and hearing him snore. Of both of us being sick.

My life with my dad was a blur of him not being there, a blur of him not wanting to see us because he was in such horrible shape. A blur of just little pieces of memories of him, because I didn't get to see him a lot. My life with my dad was a blur of wondering, does he love me? Because to be honest, sometimes it felt and looked like he didn't.

My life with my dad was a blur of living with grandma and her turning into a mom and I hated her for that. My life with my dad was a blur of terror hearing he was in the hospital again. But then of excitedment. Complete joy when we heard he was coming home.

One time my brother and I where staying with our grandma. We where outside playing with our cousin April when out mom called us and told us "dad is coming home". Dan was so excited that he want me and April to make up a happy dance song thing to greet him with. It was Dan jumping up and down and landing on a nail. It went through his shoe into his foot. But it didn't break his spirits. After the first shock and pain, after it was pulled out and his foot patched up, he was right back to the excitement. My brother and dad had an amazing relationship. Something I wish I could say I had too.

My life with my dad was a blur of waking up to random people in my house. I remember one time I dreamed a phone rang and someone I knew but didn't live with us answered. I woke up to the phone ringing, my grandma answered it because in the middle of the night my mom had to take dad to the hospital so he came over.

My life with my dad was a blur of hanging out with cousins while my mom, dad, dads parents, and dads brother go to Wisconsin so my dad can get a bone marrow transplant from my uncle. It was a blur or surgeries, my had a fake hip.

My life with my dad was him taking odd jobs to make money. At one point in life he was a my bus driver. I remember the exact day my dad died. I remember everything that happened.

It was a school day. My dad was my bus driver. I always made sure I was the last one off the bus just to say bye to him. But me being the 11 year old that I was just mumbled bye and got off the bus. Its what kids do the don't want to show love in front of friends. That day when I was getting off the bus something in my head was yelling at me, telling me to hug him and tell him I love him. I fought with myself the whole length of the bus. My head wouldn't let up it just kept screaming TELL HIM YOU LOVE HIM. But I just couldn't so I mumbled bye and went on my way. Later that day, near the end of class my mom came to my school to give me a key to the house. She told me that dad got sick and was in the hospital so I needed to let myself in. Which is normal, I've been doing that for years. I got home, and waited for my brother. My mom finished her bus rounds (see too drove a bus, the couple that works together stays together) and went straight to the hospital to see my dad. Late that night my grandparents came and picked us up. It was getting bad. My dad had pneumonia, and because of the cancer his immune system was shot. Fluid was filling his lungs, he was turning blue. My grandma grabbed her rosary and took me and my brother up to her bedroom to pray. Next thing that happened was we got taken over to a cousins house. My grandparents wanted to be with the son. So we slept at our cousins. My aunt said she would wake us up in time for school. I woke up at 6. We where suppose to get up at 6. And I remember laying in the top bunk of my cousins bed watching my cousins clock blink, 6am 6:02 am. When it got to 6:30 am i started getting worried, confused and scared. I wanted to get off the bed and go find someone, talk to someone. But I couldn't make myself move. I knew something had to be wrong. I laid in bed trying to make myself move. Eventually I got down and left the room. I passed my cousins bedroom and he and my brother where playing video games. I walk into the living room, and see my mom, aunt and uncle sitting there. They where so still, talking so faintly. That's when my mom pulled me aside and told me what happened. My brother came in and we all cried today.

The next few days where horrible. My mom told me how our neighbor came over and asked what Dave was up to and she had to tell him. The super had to tell all the kids on the bus. Mom made sure that Dan and I went and played with the neighbors like we always did. That was the day, that I danced in the rain. It was a Tuesday my dad died. So we didn't go back to school until the next Tuesday. I remember the wake. I've never seen my uncle cry before, and it wasn't something I ever want to see again. One of my best friends from school came to show support. My uncle and aunt flew in from California. Our neighbors came. I remember my neighbor just hugging me and letting me cry on her chest. I remember my mom bringing a pager and a gun to be put in the casket to be buried with him. She accidentally left it under a chair and had to put it in the day of the actual funeral. The day of the funeral I didn't want to go. I didn't want to get dressed. I didn't want to shower. Nothing. My mom took me to the bathroom and told me it was okay to cry. And told me that if I didn't want to show it I could cry in the shower. So I did. I showered and cried. Picked out an outfit my dad liked and cried. Got dressed and cried. We put his canoe on top of his bronco and took that to the funeral home. He would of loved it. We did the funeral thing and then we went to the ceremony. It got to the point where we went to put flowers on top. My cousin almost fell in. It gave us a very needed laugh.

My dad Is my hero. He taught me how to fight. So when people tell me wow your so strong, I think of him. He was the guy, beaten up from cancer yet still went outside to play catch with me. He was my dad and I love him. And I hate myself for not saying goodbye.

This has been the hardest thing for me to write but I'm glad I did it. The world needs to see how strong my dad was.

Friday, October 15, 2010

10 years ago tomorrow: my worst mistake

I would be posting this tomorrow, but tomorrow is my brothers wedding. So tonight it is. I want to tell you a story. A very painful story for me. But my hope with this post is that maybe, someone, somewhere will learn from it.

Life is to short, say whats on you mind. Do what you want! And most importantly, tell the ones you love, that you love them.

Okay, October 16, 2000. I was 11 years old. It was just 14 days after my 11 birthday.

Let me just explain a few things. My dad, had cancer. Acute Myeloid Leukemia. He was diagnosed when I was about 6 years old. I'll remember that day forever. But that's for another post. My dad and I didn't get along the best. It was the pre-teen thing. We where both moody and sick. I remember one day giving him a hug and him asking me "what the hell are you doing?" I remember wondering, does dad really love me?

October 16, 2000. It was a normal day. A Monday. My dad drove my school bus. I always sat in the back seat so I could be the last one off, I wanted to be able to say goodbye to him every morning.

That morning it was different though. While I sat there in the back of the bus my thoughts wouldn't leave me alone. Something was eating away at me. Did dad really love me?
My mind just kept shouting over and over! GIVE HIM A HUG! TELL HIM YOU LOVE HIM!

But me being a stupid kid, I mumbled goodbye and walked into. School was normal that day, expect for that one feeling. You should of told him you loved him.

Near the end of the day my mom showed up in my class room. She was there to drop off the house keys. Dad was sick, he was taken to the hospital. My stomach dropped. I tried to convince myself that he would be okay. He just got sick a lot easier because of the cancer and chemo.

But that feeling was still there, stronger then ever.

I got home to an empty house that afternoon. The rest is a blur.

Grandma coming to pick my brother and I up. Kneeling by the bed and praying. Grandparents rushing to the hospital because he wasn't doing well at all. Climbing into the top bunk at my cousins out. Not knowing what was going on. Knowing dad was very very sick.

I went to sleep, not knowing that I'd never see him alive again. I went to sleep kicking myself for never saying "I love you"

--- I'm sorry day, so sorry!---

Thursday, October 14, 2010

The Government is slow : My amazing day

As most know today I had my littlest heroes shoot! For those who don't know what the littlest heroes is go here.

My photographer was lovely and she brought her niece. They Did a great job relaxing me and my mom also came and helped me relax and got me to laugh.
I can't wait to see my photos and share them with all my amazing heart friends.
Sometime around October 26.

But just before my photographer showed up today I got this call. That's really what this post is about.

A little over a year ago I found out I would need my second open heart surgery. Sixth heart surgery all together. That's when I began trying to get medicaid. Which they told me, and here is an exact quote "Idaho medicaid has nothing to do with you health." Meaning they drop you at 19 and they don't care how sick you are. They don't care if you're facing a life and death situation. You can't get back on it unless you are pregnant.

That's when I began the very long process of filing for SSI disability.

But I also decided to write to a bunch of people. Bring their attention to this. This wasn't right. Not even a little bit.

I wrote to the congressman, the news channels, papers, even the president.
Well today I got a call from one of the head ladies at the medicaid offices.
The letter I wrote to President Obama was forwarded to her!
She wanted to see how she could help me.
She asked if I filed for SSI. I told her how I'm waiting for a court hearing.

So that's when she told me she was going to send me a letter. With links, and other resources. Something to try and help me get the health insurance I need. She was going to look around and see what she could do to me.

The government is slow. But sometimes, if you wait, and forget (like I did) sometimes someone out there will try and help you!!!

Of course, it will take a while. But at least finally, someone is on my side. Finally someone is willing to help!

Wednesday, October 13, 2010

Being different is okay.

Last night I had an experience that changed my thoughts about my heart.
A very Powerful moment.

I use to think, I was different. Not normal.
My heart is half and very mended.
Its not what people are use to.

Last night, while cuddling, I could feel a heart beat. At first I thought it was mine. But when he hugged me a little closer I realized it was his.

So strong. So Rythmic. So perfect. So beautiful.

Thats when I thought of my heart.
Not so strong, random, mended.
Not perfect, not normal.

But it made me realize, thats okay.
Sure my heart isn't whole. It isn't perfect.
But it doesn't matter.

I love, just like anyone else.
Thats all that matters.

I may only have half a heart, But I love with a whole one.

Baby Of Mine

--I wrote this post many months ago, But I am trying to switch over all my posts to this blog.--

Dear Baby Of Mine.

Hi there baby. I never had you, I never met you, but you where mine.

You where the hope I felt whenever I wanted to give up. You where the light at the end of the tunnel. You where what made everything worth it. I was striding towards a goal. I had meaning. You where what I thought of when I played dolls. When I played barbies. I dreamed of the day that I would have you. I dreamed of you and many siblings.

And now here we are. I've lost you. I've lost you but I never even got to have you. I had open heart surgery as a baby but I never thought oh maybe I can't have kids. Stupid Stupid Stupid Stupid Stupid.... Cause now, here, I just lost the best thing that hasn't happened to me. I've been told by a lot of doctors, that my heart just can't take me having kids. My body just wouldn't be able to handle it. And if I did have my own child, well, you might be born with a heart problem like me. I wouldn't want to do that to you baby. See, even though I never met you, I never got you. I love you more then you think. More then I even knew I could love someone.

Months ago in June 2009, I was trying for you. Oh man did we try for you. He wanted you, sure, but I wanted you even more. And then one day, I wasn't very late. But I had a symptom or two. I didn't want to jinx myself, or disappoint my self or get my hopes up. So I never mentioned it to anyone, anyways, you would of only been a tiny speck. About a month. But then in the shower one after noon it happened. I didn't even feel it happen. I just looked down and there where a lot of clots. And I mean a lot. More clots then I've ever had in my life. I kneelled (sp?) down on the shower floor and tried to stop some of the clots before the got to the drain. I'm not sure what exactly I was looking for. Maybe some sign of you? I don't know. Would you have showed? Would I have been able to see you or where you to tiny? I stared at the clots for a minute more. Not exactly sure what I was looking at anymore. Then as quickly as I knelt down I sprang back up washed my hair and got out of the shower. I don't know what happened that day. I never mentioned it to anyone for a while after. Your daddy was in my bedroom doing something. Oh boy was I glad he didn't join me in the shower that morning. I didn't mention any of this to him.

I explained what happened to my friend and googled it. I believe it was you baby boy. My Shawn David. See I dreamed about you a week or two before. The dream was so real! I saw you, I held you. I felt the love of a mother for her baby! Ill still remember that feeling. I remember putting you in your crib and watching you sleep. I don't think this would have been so hard if it didn't feel so real! It felt so real, and I was having symptoms and I thought maybe it was a sign. But then the clots.

Maybe it wasn't you. Maybe I just wanted you so badly I just made the symptoms up. But honestly. I do believe it was you. I don't care what people say about me anymore. I believe it was you baby.

I had my 6th heart surgery 10 months ago. And before that I was told "NO YOU SHOULD NOT HAVE CHILDREN!!!" My cardiologist thinks it might be possible. But it would be tough on my body, my heart. I would have to have you via C-section. But it could be very dangerous. And then there's the thought, I have a higher chance of having a CHD baby because I myself have a CHD. I don't want to do that to you baby. I love you to much to put you threw what I've been through.

So here I am baby. I'm stuck with 4 options.

1- have my own - which is pretty much out,

2- surrogacy - no one will do that for me, I've asked plus we still have higher CHD chances

3- don't have any kids at all..

4- adoption. which is the most likely case.

But baby of mine. I need to apologize. I dreamed of you for so long. I've loved you for just as long. I never got you and I miss you so much! I think of Aiden's mommy and daddy, and Cora's mommy. I think of all the other parents who have lost children. I can't even begin to imagine what its like.

Baby of mine. I loved you since the very first time I picked up a doll and said I'm gonna be a mommy. But now, you'll never come to be. You'll be staying up in heaven with Jesus, and Cora, and all the others. Or maybe Jesus will decide to send you to another loving family. Which baby boy, is good. I hope they love you as much as I would.

I love you baby boy, this is our last goodbye.

Monday, October 11, 2010

Beliefs - not a christian

I'm tired of labels. I'm tired of fighting. People tell me I'm un-christian, I'm a sinner, blah blah blah. So on and so forth.

Let me clear some things up. I havn't called myself a Christian in a long time. Why? Because I realized I don't follow the rules.

I have stopped telling people "ill pray for him" and turned it into "Sending loving thoughts" because I dont find myself ever really praying.

I believe people don't have a choice who they fall in love with. I believe sitting in church and being bored out of my mind would be and insult to God, so I don't go.

I swear, I get moody and I take prescription pills (which I've been told is wrong).

Sure I know some things are wrong, MURDER, THEFT, HURTING ANOTHER PERSON.. The big stuff.

Yes those are bad. But why is falling in love with someone of the same sex considered bad? How is saying a word consisdered bad?
I refuse to believe that someone is going to hell because they happened to fall in love with some one who has the same anatamoy as them..

Now Im not saying I don't believe in God. Because I do. I honestly know he's out there. I believe in him and love him.

Im just so tired of everyone else's judgment

Sunday, October 10, 2010

I'm scared.

I'll be honest. I act brave and proud. I am a CHD warrior. But, I am scared. The nightmares are starting again. The pain is coming back. So how much longer until I'm in heart failure again?
Let me tell you a little bit about my life before my last open heart surgery. I doubt nightmares had anything to do with anything, but there was alot!
The pain was horrible.
I had trouble breathing. I could put my hand on my chest and feel my heart beat. So strong, so hard. I didn't know I wasn't suppose to feel it by just touching my chest. The heat made me so sick. I'd get so hot and so nauseated. If I moved to fast my heart would pound. And it got to the point where just walking room to room just hurt so bad. My heart would hurt when I moved. It pounded and the pain would be so bad. I got the worst headaches. It got to the point where I would just sit and cry trying to wait for it to pass. It always did pass eventually. But then I'd have to move again.
I know what you will say OMG! Why didn't you go to the doctor alot sooner. I know I know, I should have. But I was trying to ignore my heart defect. But I learned my lesson. When I finally did go to the doctor I learned some scary stuff.
* I was in atrial fibrillation and was at a high risk for clots and strokes.
* My heart was dilated and up against my breast bone.
* My fontan surgery wasn't lasting.
* I was in heart failure
* I could drop dead any second
* without surgery, they only gave me 5 years to live.
So I had my second open heart surgery (6th heart surgery all together). They did the maze procedure to fix the A-fib. They removed part of my heart. They did the fontan revision, and they implanted a pacemaker.
They told me a week after surgery that my heart was looking great and there was hope for no more surgeries. But If I did need another surgery It would be a transplant because I was all out of options.
Its been a little over a year now. My last cardio app in march went well. They told me my heart looked good. They even told me I could move my apps to every 6 months instead of every 3. But I'm still having issues.
I've been having alot of issues with tachycardia since surgery. I've gone to the ER at least 3 times. They always tell my I'm fine. And when they tell me I'm not fine and should see my pacemaker doctor, I do go, and he then looks at me and says.. well now your heart is acting normal again. We don't need to do anything.
Well the pain is coming back. This time is different pain. A more excruiating pain. It starts with a sore jaw. Then It moves into my chest. And then my chest, shoulders, and jaw just hurt. It hurts like a fucking bitch!!!!! This has happened twice. The last time this happened my aunt was talking to me. She stopped dead and just stared. She asked me if I was alright. Trying not to make her worry I was like yeah. She is like no Jess, You are whiter then white. Why are you so pale whats wrong.
And now, the old pain is starting again. The moving to much is making my heart pound again. I get so out of breath and tired.
Maybe I'm just a worry wort. But Im scared. What if the heart failure is back? What if my heart is dilated again. What if the surgery is failing??

Wednesday, September 29, 2010

Give me Strength

Well I guess this blog as turned into a diary of sorts. A way to talk to my father. Which I guess isn't bad. It helps, at least I think. So here I go again, I'm going to talk to my dad.
Last night, for the first time in a long time, I cried myself to sleep. I don't know why it happened. But you where just on my mind I guess. I'm thinking of October 16. The day I made the biggest mistake of my life. It's approuching quickly and this year there is more to it. This year, marks 10 years since I made that mistake. This year, it is also Dan's wedding. I don't know why he picked October 16th. The day before you died. I wish I could ask him why, but I can't. Mom keeps saying well at least there is now something happy to celebrate at that time. But I don't see it that way. I can't see it that way.
I made the worst mistake of my life on October 16th 2000. And now, exactly 10 years later, I have to celebrate a wedding. He is my brother and I am SOOO happy for him! But it will be very hard on me. I need you to watch over me and make sure I don't break down during his wedding. Because I wan't to break down just thinking about it now. I'll be drinking and dancing, and you should be there with us. And you wont. And that just makes me mad.
But I will put on a happy face. I will be a part of that wedding. I will laugh, and dance, and drink. I will have fun, even though I am sad. I just need you to be there with me.
I love you dad.

Friday, September 24, 2010


Hi all, It's me again! As you already knew. Anyways. So I thought I should clear something up here. This is about my facebook statuses.

When I complain on my facebook status, I am not looking for pity. Or help for that matter. I post my feelings becaue it's one of my only ways of getting them out. And I know if I don't get them out thats just gona hurt me more.

So when I post something like "ugh I was I had a better phone"
I am not asking for people to offer to buy me a phone. I am not asking for them to send me their old ones. All I'm saying is just that. I wish I could have a better phone. But I know at this moment in my life I wont.

I am not happy with my life at this moment. This wasn't how it was suppose to go. But it has, and I use my facebook to vent my frustration over it.

And I appreaciate everything you all do for me. All the offers to help. But thats not what I'm asking for. I just post it to get it out. To vent because I know some of you out there understand. And all I really want is prayers for a better life.

Friday, September 10, 2010

My Other Story

I know its hard to see, but yes, that's what you think it is. And no, I am not suicidal.

I never shared this story before. Never publicly. Never with anyone besides close friends. But I feel it's time. Time to get it out of my mind. Time to open myself up so I don't have to hide the struggle I'm going through anymore.

I'm not gona be one of those people who said, I saw this coming. We all saw this coming. Because I didn't. I mean, when I look back on it now I guess I can say "hey yeah thats not right, maybe this is a sign of things to come". But I didn't pay attention I was a kid. And my mom never paid attention because I was a heart kid, and heart kids are more emotional then 'normal' kids.

I remember one moment as a child, thinking OMG I am ugly. And I remember wondering if my dad loved me. But I didn't think anything of it. Until now. Here is my story. The UNTOLD story. Not my CHD story no, my Bipolar story.

I think I was 14. I remember being in 7 and 8th grade. I remember thats when I began getting depressed. When I began to really feel ugly. But then 9th grade started. I finally made a really good friend. We met in spanish class and we clicked instantly. The first time we hung out, we snorted some white stuff and then went and TPed a church. Thats when it began.

Drinking, smoking and huffing. Thats all it was for a short time. A very short time. Getting high and music, it was a relaxing life for a bit. But then that nagging feeling came back. That you arn't pretty. You arn't loved little voice in the back of my head. I needed an escape. I needed out. Thats when I began to stop eating. For a while, that was enough. All I did all day was plan my food intake, weigh, count calories and make weight goals. I was happy when I lost my first 5 pounds. But then it got harder to lose weight.

What I didn't realize was I was battling an eating disorder. I thought I was fat, I thought it was normal for me to want to lose weight. When people told me I was to skinny and they wanted to buy me a cheeseburger I got pissed. I thought they where laughing at the fatty. So I began working harder. Not only did I limit my eating I began making myself throw up what I actually did eat.

I slowly lost weight but it wasn't fast enough. My mom was starting to wonder a bit. Asking me if everything was okay. Everyone at school asked me how much weight I lost. Only 10 pounds, geeze not a big deal. I was so tired, I told my gym teacher I didn't feel good and needed to sit out. She looked at me and ask if I had been eating. I told her yes. She looked me in the eye and said "YOUR LYING".

It got even harder. My mom was making me eat in front of her, my teachers kept talking to me about me eating and all the other kids where staring. I felt fat, ugly, and pissed. Thats when It got to its worst. Thats when I pulled out the razor blade. I remember exactly how I tried cutting. It was after watching an episode of degrassi: the next generation. I remember watching that episode. I remember seeing Ellie, I could tell she felt like I was feeling. But I didn't understand how cutting helped her. I thought she was a crazy lunatic. I just couldn't see it. So I tried it.
Well my eyes where opened. The pain, the relief that came with the pain and blood. I understood. I got it. And thats when it go bad. I cut so much I went through so many band aids. About a box a day. I cut and let it bleed for a bit, but then put a band aid over it. I hated covering it up but I was on blood thinners. And If I didn't cover it up the blood would seep through my sure and my mom would be able to see. I began wearing long sleaves all the time. I went through all the band aids in the house so I had to use toilet paper and tape. I stole my moms box cutter. I spent an hour in the bath cracking open a despoisable razor to cut with. I intentionally bought eye liner sharpeners. Unscrew those and the blade came right off. It worked perfectly. And the razor was small enough I could carry it around we with at all times.
Because it came to the point where I needed to make sure it was with me. I needed to make sure I could cut whenever I needed to cut.
I remember showing my mom, the first time I cut. I remember we where sitting on my bed crying, talking about the eating and I showed her the cut. She asked me if I was trying to kill myself. Honestly, no I wasn't. I've never serisouly thought of killing myself.
After that talk my mom watched me closely but I got smarter. I found ways to hide the cuts and to get out of eating or getting rid of food.
I remember one time me and my mom watched the degrassi cutting episode together once and she looked at me and asked, should I check your arms? I told her no. Thats when she knew. So thats when I began cutting my legs. The whole time, losing weight along the way.
Eventually the school got involved and kids found out about the cutting. I begged and begged them to not tell her. But they did. I remember my brother coming into my room and going "WHAT THE HELL ARE YOU DOING?" I think he was scared. He bagan to cry. And then I cried. I showed him my legs and we just cried.
Thats when my mom got pissed and began searching my shit and took all my razor blades. The ones she could find anyways. She began to weigh me every morning. Told me as long as I was 100 lbs or m0re then she wouldn't push it to much. Well I knew I wouldn't weigh that one morning so I put extra clothes on. I still only weighed 95. Thats when she got mad. Thats when the watching bacame 24/7. Thats when I finally told her "fine Ill go to BHC" Just to get her to leave me alone. BHC is behavorial health center.
What she didn't know was how bad I had gotten. She didn't know about the extra clothes. She didn't know that I had began cutting my feet, hoping to cut the veins. I wanted the blood.
I went to BHC and was watched closely. I wasn't allowed to go to the bathroom after I ate. I had conselling. After a week, a horrible horrible week my mom took me home. But that didn't stop me. I still cut and hid it, I still worked very hard to lose weight. And cried when my weight went up by a .5 I went to counslers weekly. Thats when I was diagnosed with bipolar. I had 2 different conselers. One kicked me out after he saw I was still cutting and wouldn't talk about it. The other one, IDK why I stopped seeing him but I did.
But I was still cutting and still not eating. I'm not really sure how I stopped myself. But its been about 2 years since I've last cut myself, or at least cut myself to make myself bleed. I still scratch myself. And if I had a razor blade, which I try to not let myself near, I know Ill do some damage. Draw blood and make another pretty little scar. I look at myself daily and go "5 lbs and you'll be good"