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Ivelisse
05-07-2009, 04:31 PM
My name is Ivelisse and I was diagnosed with Wegners at 15.Heres my story.Enjoy!

Growing up I was a very athletic and energetic girl.I loved playing volleyball and I was also a professional Salsa dancer.Everyone knew me as the girl who could put a smile on your face.I was very popular in high school and had tons of friends.Toward the end of december in 2007,I came home one night from my friends house and I suddenly started feeling this horrible chest pain.I couldn't stop crying because I was in soo much pain.My mom sed lets go to the hospital.They took xrays and drew out blood and I was first diagnosed with Pericarditis,I was admitted for a couple days then sent home.Days after that I still had chest pain but I started having fatigue, diarrhea,a dry cough,vomitting,and stomach pain.January 3rd 2008 my mom then took me to the hospital again.From that point on I knew I was in for a huge life changing experience.I was diagnosed with Wegners and admitted into the hospital for 2 months and a half.They took biopsies from my heart and kidney.This disease ate up the right side of my heart Im living with only the left side and kidney failure too.I had Plasma Ferrisis done acouple of times.I began having irregular rhythms and starting having episodes.Feb.05 I was implanted a pacemaker and defibrillator.I drink from 20 to 25 pills a day.Tough ? I know! I cried every night in the hospital but there was no doubt in my mind that I wasn't gonna get thru this.I was not giving up because I am STRONG.Feb.15 was the day I got to see the light outside again.I was alive and thats the important part.Now I am living a normal life,drinking my meds and having fun because I was given a second opportunity on this world and I am so thankful.:)

Heres something I wrote while in the hospital;
As I sit here, in the hospital,
the only thoughts running through my mind
Is why me . Why am i being put through so much suffering?
What have I done to receive such punishment?
Being in the hospital is the worst feeling in the world.
But there's worse, knowing that at the age of 15, your heart isn't working.
Knowing that your life isn`t going to be the same.
Waking up to medication, not having the life you once had,
Feeling different around people, my life has come to a BIG CHANGE.
Something i least expected, scared to go out into the real world again,
That's how i feel.
Laying in a hospital bed is tough!
& Knowing that when I look into the mirror
There`s a girl who has so much ahead of he but...
Dreams no longer exist, Hope is lost.
Tears flow down her eyes but she doesn`t let anyone see.
Her smile doesn`t mean she`s happy
Her heart aches. She`s afraid to tell anyone anything anymore.
No longer trusts;
Staying strong is what she wants to do, but she really wants to give up.
Waking up realizing I`m not home, this isn`t my bed, this isn`t where i want to be.
But i was put in this situation because the Lord knew I was strong enough to handle it .
Her biggest fear is stepping back into the "real world".
Being looked as "different", seen as the girl with heart problems.
Someone you'd have to feel bad for.
I want to be able to do the things I use to do.
Looking around wishing I could do what normal 15 year old girls do.
I can`t do much now && it hurt's .
So many things on my but i can`t find the words.:(

This is after;
Alot of people ask me how do I do it,
I just reply I'm a gift && God is doing all the work.
I'm a miracle =] I was left on this earth for a purpose.
What I went thru is not easy, but there are worst thing's.
I was put to a test, and evie baby is not a failure therefore i passed .
Sometimes I wake up, an I think wow I've been thru so much.
Reaching to the age of 16 was a beautiful thing.
Not alot of people thought i would make it but i proved them wrong.
I am very special, i was chosen to make a change and so i did.
Alot of people dont look at life the same,
i've helped them learn that we shouldn't question God. We all have to go thru it sometime.
Some worst then other's, and it is up to you to either lose hope or keep hope alive.

<3 Ivelisse

Sangye
05-07-2009, 10:30 PM
Everyone knew me as the girl who could put a smile on your face.<3 Ivelisse
You still do.


I am STRONG.That's an understatement!


I am so thankful.I'm thankful you're here, too.

What a great story, Ivelisse. I love your poem. It made me cry remembering how I felt the same exact things. You put it so well. :)

KtheC
05-07-2009, 11:29 PM
I love your posting!!:)
This is a good pick-me-up at a time when I need it!
Thanks

Doug
05-09-2009, 04:33 AM
Alot of people ask me how do I do it,
I just reply I'm a gift && God is doing all the work.
I'm a miracle =] I was left on this earth for a purpose.


Ivelisse- I believe that, too. Thank you for this incredible account of your experience with WG. I teared up I can tell you, and I feel I'm in a state of shock that so much happened to you. I think anyone with WG who came through without any serious (relatively) destruction to organs can only read your account and think: That could be me, too. Welcome to the forum! I think you can add a lot!:)

(Sind Sie Deutsch?)

jola57
05-09-2009, 08:49 AM
Ivellise, what a beautiful poem. it says so much of what we feel. I am so sorry you had to go thru so much as such a young age.

coffeelover
05-09-2009, 09:40 AM
Ivelisse,

You have alot of insight for such a young person. What a wonderful poem. Thank you for sharing it with us.
Lisa

andrew
05-11-2009, 06:56 AM
Welcome! Great to have you here. Your poem is inspirational as are you. Your positive attitude is infectious :D

Terri
05-11-2009, 11:56 AM
You go girl!!!:)
I believe too that we are all gifts from God.
My favorite verse is, "HE will either shield us from the suffering, or give us the strenth to bear it." I think too that you have to learn how to control the disease or it will control you.
I think you will be ok. You sound like a strong person.
Welcome.:)

Cindy M
05-12-2009, 09:36 AM
What a wonderful strong girl you are. The world is definately a better place because of you. At such a young age you have become a teacher and have accepted your disease with such maturity. You truly are a beautiful person. All the best to you.

Ivelisse
05-14-2009, 02:00 PM
thank you so much :)