A little bit of discouragement is in the air....
I think that having a kidney disease has completely changed the way that I look at things, more specifically life. I’m really trying to live for me, doing what I want to, because I want to. Don’t get me wrong, I’m not living life in the moment because I’m afraid I’m going to drop dead, it’s more because I really want to appreciate life.
This summer I grew up a lot. I experienced my father’s dying organ, but I also experienced the life of another. I experienced love and I obtained an amazing support system.
Now, I’m back in school, and I’m on yet another ‘kidney mission’, and I’m waiting for all that support to kick back in again. I think it’s hard for my friends that weren’t directly involved with me during the transplant, because they will never understand what happened, unless it happens to them.
It’s hard raising money, and spreading the word. I hate asking for money, and I guess I almost expected that everyone would support me right away. With words of encouragement, or donations, or even the offer to walk alongside me. Of course I have gotten a few of those, and I am so incredibly thankful for them, but I guess I expected more.
I want everyone to understand how important this walk is to me. I want them to understand how important the testing program is.
You never understand what an incurable disease is until you, or a family one, have one. From the outside, there are no clues leading to PKD, I am like every other normal teenager.
I wish I could make people understand how scared I get. Or even how alone I feel at times too. What happens if theses programs don’t work? What happens when my kidneys fail?
I get so mad sometimes about this disease. Why I had to be the one to get it, or why it had to attack my dad.
I am constantly looking for hope in the bad situations, but it’s really hard when you feel so alone. Hardly anyone in South Bend knows about PKD, and if they do, we don’t talk about it together.
This is why I am looking forward to going to the walk. I will have that community. I will have those people working towards the exact same goal as me.
It’s hard not to get discouraged. I know this isn’t the most positive entry that I’ve made, but it’s what I’m feeling right now. I have my good days and my bad days, and lately I guess I’ve had my alone days. I want everyone else to be just as excited about the cure as I am, and to be beside me every step of the way.
I feel like I’m letting people down, because I know that a lot of you read my blog to find hope, or a friend dealing with PKD. It’s hard. I know. I could use you too. :)
Good luck to everyone who’s doing the walk. And good luck to everyone who is involved, in any way, with PKD, or any other disease. It’s really hard, and the fact that you are reading this, and being proactive, means a lot.
I apologize for the bad grammar/writing/spelling that I am sure is in this.
This summer I grew up a lot. I experienced my father’s dying organ, but I also experienced the life of another. I experienced love and I obtained an amazing support system.
Now, I’m back in school, and I’m on yet another ‘kidney mission’, and I’m waiting for all that support to kick back in again. I think it’s hard for my friends that weren’t directly involved with me during the transplant, because they will never understand what happened, unless it happens to them.
It’s hard raising money, and spreading the word. I hate asking for money, and I guess I almost expected that everyone would support me right away. With words of encouragement, or donations, or even the offer to walk alongside me. Of course I have gotten a few of those, and I am so incredibly thankful for them, but I guess I expected more.
I want everyone to understand how important this walk is to me. I want them to understand how important the testing program is.
You never understand what an incurable disease is until you, or a family one, have one. From the outside, there are no clues leading to PKD, I am like every other normal teenager.
I wish I could make people understand how scared I get. Or even how alone I feel at times too. What happens if theses programs don’t work? What happens when my kidneys fail?
I get so mad sometimes about this disease. Why I had to be the one to get it, or why it had to attack my dad.
I am constantly looking for hope in the bad situations, but it’s really hard when you feel so alone. Hardly anyone in South Bend knows about PKD, and if they do, we don’t talk about it together.
This is why I am looking forward to going to the walk. I will have that community. I will have those people working towards the exact same goal as me.
It’s hard not to get discouraged. I know this isn’t the most positive entry that I’ve made, but it’s what I’m feeling right now. I have my good days and my bad days, and lately I guess I’ve had my alone days. I want everyone else to be just as excited about the cure as I am, and to be beside me every step of the way.
I feel like I’m letting people down, because I know that a lot of you read my blog to find hope, or a friend dealing with PKD. It’s hard. I know. I could use you too. :)
Good luck to everyone who’s doing the walk. And good luck to everyone who is involved, in any way, with PKD, or any other disease. It’s really hard, and the fact that you are reading this, and being proactive, means a lot.
I apologize for the bad grammar/writing/spelling that I am sure is in this.
Comments
Love
-Torey
Don’t disparage. Raising funds is always hard, and getting the word out is a lot of work, but for each person that takes a few steps to help spread the word adds to the complete program of educating the public. Public awareness is a big hurdle at this point. Unlike a cancer walk, most people have never heard of PKD unless they know someone that has suffered from it. The more we can spread the word, the more people will understand what PKD is and why it is important to contribute towards a cure.
Don’t disparage. Raising funds is always hard, and getting the word out is a lot of work, but for each person that takes a few steps to help spread the word adds to the complete program of educating the public. Public awareness is a big hurdle at this point. Unlike a cancer walk, most people have never heard of PKD unless they know someone that has suffered from it. The more we can spread the word, the more people will understand what PKD is and why it is important to contribute towards a cure.
You're an inspiration to those of us within the PKD family! Keep sharing your message....it really does make a differnce.
{{{HUGS}} from a PKD Foundation Coordinator in Memphis TN!
Karyn
I also have kidney disease.I think my maybe a little different.but everthing you say you feel like ups and downs i feel the same people really dont understand.I have a kidney trasplant right know.but i went threw many years of dialysis and i'm still not all that good i feel bad sometime.but we do have to love life and fight to the end and try to find a cure..also I hope your dad is doing well...... talk 2 you soon GOD BLESS YOU and your family
I am 27 and found out I had PKD when I was 18 when my dad made me get tested. I have a 2 year old and one on the way and I really pray they don't inherit this from me, or if they do that what we're doing by walking and getting donations will help them in the future and give them a CURE!
Thanks so much for posting your deepest thoughts on your blog...it's nice to be able to relate to another with the same disease as me. Stay strong!
Thank you so much for your honesty. Thank you so much for your bravery. And thank you so much for sharing your journey with us.
I do not have PKD. But I have seen it rear it's ugly head and take the life of someone that I love. It is my greatest fear that the people I love most in this world will inherit this gene as well. But this is why we fight. Even without ever completely under standing the why, the how, or the what will be...Together, we fight.
Stay strong girl. Now let's all get ready to Walk for a Cure tomorrow! :)