Hello Strangers!
Suprise! I actually updated my blog! :)
I am really sorry that I haven't been as regular in my writings. I've thought about writing numerous times, and have even gone as far to write one out on paper, but obviously, things fell through. I've been really stressed with the whole college application process, etc. Things have been pretty smooth lately in the kidney department. I've gotten pretty discouraged lately, and I think that's one of the reasons that I haven't been writing as much.
Because of writing the blog, and people finding out about my "position" in the "Magical World of PKD", I feel bad when I get in those discouraging moods. I want people to read my blog and feel happy and hopeful, not depressed by the way that I'm feeling at that given moment.
I have just basically been discouraged by the incurable part of PKD. I always assumed that a transplant would be the ultimite cure for PKD, but I am slowly learning that its not really. My dad's daily life is still different that it used to be and I know that I will come to that point eventually. He still has to take those pills twice a day, and has to be careful about some health issues. When he had that cold, I think that some things just clicked for me. The difference in our lifestlyes. The fear I get when any of my friends get a common cold; praying that I won't get it and then eventually pass it on to my dad.
I'm not going to lie, I've been pretty down lately when it comes to the kidney department. I wrote this essay a while ago for a contest, it could be better, but it was what I wrote at the time... and I'm going to share it with you guys.
Finding hope during the rough parts of life can be extremely hard. It’s difficult to look forward to a new day when you know that the new days won’t shine as much as they used to. I always heard stories about people finding hope through their diseases but for a while I never understood how it could be done. I was oblivious to the reality of diseases, to the reality of finding hope when everything else is working against you. When I was about twelve years old, I decided that diseases existed only in stories and would always be that way for me.
A few years after that my Dad was diagnosed with polycystic kidney disease (PKD), an incurable disease that causes the kidneys to fail. I took the news of the diagnosis badly and gradually became paranoid, hopeless and angry. Instead of being hopeful for a better outcome, I was too fixated on the idea of the disease in the end.
I spent hours online researching PKD, because I was so determined to learn as much about the disease as possible. I couldn’t stop picturing all the cysts covering the inside and outside of my Dad’s kidneys, suffocating them, and turning them into a foreign object. Even though I was so obsessed with PKD, it never became a reality, and was still another disease that was only found in stories.
PKD finally became a reality for me on Father’s Day in 2007, when I was told I had inherited the disease as well. They detected PKD after an accident that resulted in the bursting of a cyst. Normally people don’t find out until they’re in there thirties or forties, so me finding it out when I was fourteen was a weird. I took the news negatively at first, using all my time to feel sorry for myself, rather that see what I can do about my kidneys.
When I found the website, www.pkdcure.org, things started to change. At the website I could read stories of hope from people who were going through the exact thing as me. I read about the hopes to find a cure, and that’s when I stumbled upon the walk that raises the money that funds medicinal testing programs. I went to the walk at found my PKD family, who helped me see the hope in the disease we all shared. I started to channel my energy towards finding a cure, rather than being negative. A few months later I signed up for one of those medicinal testing programs that would be starting in a few years. All of my energy was turned into hope, which then turned into the goal of finding a cure, and my first big step was this testing program.
While all this was happening my Dad’s function was gradually decreasing. He was put on the transplant list we started the search for a donor. The process was long and hard, and very taxing on all of us. Eventually our angel, Lori, pulled through and tested positive as a match. The transplant was successful and gave back all the hope that had ever been lost.
A month after that I went to Colorado and started the testing program. It’s only been two months since the transplant, but in those two months my hope has grown larger than it’s ever been. My Dad’s doing great and I’m being as pro-active about PKD as possible. I’m spreading our story and hope to as many people I can.
Finally I understood those stories about finding hope through a disease. It wasn’t as hard as I thought it would be to find hope in that situation once I realized that hope only works for you if you work for it. I understand now that there is no reason to lose hope when there are so many options out there. We come closer and closer to our common goal of a cure every day, and that thought alone helps me find my hope. I know that no matter where my health is later on as the disease progresses, my hope will never leave me. I will always have my hope for a positive ending, and my goal to find a cure for polycystic kidney disease.
I've been reading that essay over and over again, trying to instill some more hope in me. I know this is just a phase that I'm going through, and that I don't have to be positive all the time... but I can't help feeling guilty. So I think that may be a big reason why you haven't heard from me in awhile...
This has been a long entry... so I'll update in a few days with some new stuff. ( I promise I will this time!)
Lydia
Suprise! I actually updated my blog! :)
I am really sorry that I haven't been as regular in my writings. I've thought about writing numerous times, and have even gone as far to write one out on paper, but obviously, things fell through. I've been really stressed with the whole college application process, etc. Things have been pretty smooth lately in the kidney department. I've gotten pretty discouraged lately, and I think that's one of the reasons that I haven't been writing as much.
Because of writing the blog, and people finding out about my "position" in the "Magical World of PKD", I feel bad when I get in those discouraging moods. I want people to read my blog and feel happy and hopeful, not depressed by the way that I'm feeling at that given moment.
I have just basically been discouraged by the incurable part of PKD. I always assumed that a transplant would be the ultimite cure for PKD, but I am slowly learning that its not really. My dad's daily life is still different that it used to be and I know that I will come to that point eventually. He still has to take those pills twice a day, and has to be careful about some health issues. When he had that cold, I think that some things just clicked for me. The difference in our lifestlyes. The fear I get when any of my friends get a common cold; praying that I won't get it and then eventually pass it on to my dad.
I'm not going to lie, I've been pretty down lately when it comes to the kidney department. I wrote this essay a while ago for a contest, it could be better, but it was what I wrote at the time... and I'm going to share it with you guys.
Finding hope during the rough parts of life can be extremely hard. It’s difficult to look forward to a new day when you know that the new days won’t shine as much as they used to. I always heard stories about people finding hope through their diseases but for a while I never understood how it could be done. I was oblivious to the reality of diseases, to the reality of finding hope when everything else is working against you. When I was about twelve years old, I decided that diseases existed only in stories and would always be that way for me.
A few years after that my Dad was diagnosed with polycystic kidney disease (PKD), an incurable disease that causes the kidneys to fail. I took the news of the diagnosis badly and gradually became paranoid, hopeless and angry. Instead of being hopeful for a better outcome, I was too fixated on the idea of the disease in the end.
I spent hours online researching PKD, because I was so determined to learn as much about the disease as possible. I couldn’t stop picturing all the cysts covering the inside and outside of my Dad’s kidneys, suffocating them, and turning them into a foreign object. Even though I was so obsessed with PKD, it never became a reality, and was still another disease that was only found in stories.
PKD finally became a reality for me on Father’s Day in 2007, when I was told I had inherited the disease as well. They detected PKD after an accident that resulted in the bursting of a cyst. Normally people don’t find out until they’re in there thirties or forties, so me finding it out when I was fourteen was a weird. I took the news negatively at first, using all my time to feel sorry for myself, rather that see what I can do about my kidneys.
When I found the website, www.pkdcure.org, things started to change. At the website I could read stories of hope from people who were going through the exact thing as me. I read about the hopes to find a cure, and that’s when I stumbled upon the walk that raises the money that funds medicinal testing programs. I went to the walk at found my PKD family, who helped me see the hope in the disease we all shared. I started to channel my energy towards finding a cure, rather than being negative. A few months later I signed up for one of those medicinal testing programs that would be starting in a few years. All of my energy was turned into hope, which then turned into the goal of finding a cure, and my first big step was this testing program.
While all this was happening my Dad’s function was gradually decreasing. He was put on the transplant list we started the search for a donor. The process was long and hard, and very taxing on all of us. Eventually our angel, Lori, pulled through and tested positive as a match. The transplant was successful and gave back all the hope that had ever been lost.
A month after that I went to Colorado and started the testing program. It’s only been two months since the transplant, but in those two months my hope has grown larger than it’s ever been. My Dad’s doing great and I’m being as pro-active about PKD as possible. I’m spreading our story and hope to as many people I can.
Finally I understood those stories about finding hope through a disease. It wasn’t as hard as I thought it would be to find hope in that situation once I realized that hope only works for you if you work for it. I understand now that there is no reason to lose hope when there are so many options out there. We come closer and closer to our common goal of a cure every day, and that thought alone helps me find my hope. I know that no matter where my health is later on as the disease progresses, my hope will never leave me. I will always have my hope for a positive ending, and my goal to find a cure for polycystic kidney disease.
I've been reading that essay over and over again, trying to instill some more hope in me. I know this is just a phase that I'm going through, and that I don't have to be positive all the time... but I can't help feeling guilty. So I think that may be a big reason why you haven't heard from me in awhile...
This has been a long entry... so I'll update in a few days with some new stuff. ( I promise I will this time!)
Lydia
Comments
i'm a lurker; i found your blog through the pkd foundation. my mom has PKD and received a transplant last november. neither of my siblings nor i have been tested yet--i think we're all sort of avoiding it. just know that your blog helps, even when it makes me think about the what ifs. it gives me reason to hope that even if i do have it, some sense of normalcy can be achieved.
and really, your blog is supposed to be more for you than for us anyway, to help you sort through things and get your true feelings out. so discouragement is totally normal and acceptable, and expressing it is the only way to work through it.
sorry this was so long. anyway, the point is: we're all right there with you, sending you good thoughts. :)
-amanda
Knowing that other people have their positive days as well as their down days makes me feel that at least the emotions I am feeling are also normal.