“The pain taught me how to write and the writing taught me how to heal.”
-Harman Kaur
I am excited, honored and in awe that this is my 200th blog post. Today’s post is dedicated to you: all of my amazing supporters who have followed my journey here. From faithful readers who have been with me since the beginning to those who are reading this blog for the first time, from those of you who have shared beautiful comments to quiet readers whom I have yet to learn are reading my articles, today I celebrate you and how much your support has had a positive impact in my life.
Valen equates P in PKD to Positivity, and embracing life.
I’ve been contributing to PKD Connection since June of 2012, sharing so much of my heart and life – the highs and lows and all of the emotions that come with both. I send emails to myself and jot down notes on paper when I think of something I want to write about for you, or something that inspires me that I feel might inspire you, too. I have written articles from my couch while icing my back, on airplanes, at my parents’ house in Pennsylvania while recovering from surgeries, on vacations and in hospital beds while in pain and sick. Nothing could make me miss a deadline, skip a week or an opportunity to write a blog and share my journey with you. I want you to know how much you mean to me.
I define “you” as everyone who is fighting PKD, as well as our caregivers, family members, friends, loved ones and anyone seeking inspiration and positivity. I write with the hope that my first-hand knowledge, experiences and challenges in life will, in turn, educate and lift others up. I write because I deeply believe in the importance of sharing our stories to raise awareness, which will lead to more research and a better life for future generations. When I receive a comment like, “This is just what I needed today,” I feel that I am accomplishing my mission. If each post touches one life or helps one person in need, I am fulfilled. We are in this together to help one another and encourage and inspire each other. It is important to me for you to know that you are not alone.
K in PKD equates to Knowledge, like sharing your story.
You have, in turn, let me know that I am not alone and I thank you for that. You have supported and encouraged me through surgeries and illnesses. We have discussed serious topics together, such as the decision to have children and body image with PKD. You have celebrated milestones with me, like my kidney transplant anniversaries and the release of the first treatment for PKD in Canada.
I believe everything happens for a reason, and that we cross paths with people in life at just the right time. The reason may not be revealed right away, but it will be in good time. Eight months after my first post on PKD Connection, a disk in my back herniated and my life has not been the same since. After working full time for 10 years post transplant, I had to stop working due to my severe back complications and chronic pain. This was not easy and is still hard for me. Writing for you, however, has been a blessing and a constant positive in my life. It is something I love to do, and I look forward to and appreciate all of your comments.
Valen equates D in PKD to Determination, and achieving your goals.
Thank you for reading and for joining me on this extraordinary journey. Knowing you read my posts and that they inspire and help you gives a greater purpose for all I have and continue to endure. You fuel my passion to keep sharing and writing. It has been a wonderful source of healing and a constant in my life for the past four-and-a-half years. I can never thank you enough. Please know that I care about each of you, and this 200th post has come to life because of you! The pain has taught me how to write and the writing has taught me how to heal and you have been a big part in helping to make that happen!
In honor of this milestone, I’d love to hear from you. Feel free to share your PKD story, your thoughts on my blog and/or what topics you’d like me to write about in the future.
Hi Valen!
Every time I have read one of your posts, I have felt less alone on my journey. I thank you for that! Discussing health issues is not a pleasant experience for many. Things don’t always turn out the way you want them to. I guess that’s when you have to wing it!
I was released from the hospital on January 1. I spent the holidays hooked up to machines.;-) The surgery to remove my diseased kidneys was a complicated one. It was a success, but there were some unfortunate issues to overcome. I have four more days of antibiotic therapy for a blood infection. (Love my teeny tiny veins:-) After a week of not eating, I’m getting my appetite back. My pancreas is back to normal, and my colon issues are resolving. My creatinine is staying steady- YES!!! Every time something happened that I was not expecting, I just figured I’d get through it. I didn’t have a choice.
Now I can breathe again, and I am able to walk normally. I’m not constantly sick. I know things will always get better as I put forth the effort. Life is worth the fight.
Hi Karen!
It is my honor and you are so very welcome! Your first sentence makes my heart oh-so happy! Thank you for sharing those beautiful sentiments! 🙂
Wow, you have fought through so much! I’m very proud of you for putting forth the effort to stay strong and keep fighting all of these challenges that are presenting themselves. I’m SO thankful that your creatinine is staying steady, yay!!! Life IS worth the fight. Thank you for sharing all that you have overcome to inspire all of us to keep fighting. I’m cheering you on and sending lots of love!
All I can say is THANK YOU for sharing all your amazing stories!! You are an inspiration!!
Thank you very much, Maureen! Your continued support means so much! Thank you for reading my blogs and sharing this PKD journey with me. Hugs!
I love reading your blog! It’s always the first thing I read in my email messages because it’s always good. I love your positivity and try to emulate it, even during my dialysis sessions. Sometimes I can make other people laugh, whether they’re fellow patients, techs or nurses, doctors, social workers or dietitian. Please don’t ever stop writing – I don’t always respond but I always read it! Take care, Chris Richer
Hi Christine,
This made me smile! Your thoughtful sentiments really mean a lot! Thank you for sharing, for your support of my blog and encouragement to keep writing. I am proud of you for being positive and passing that positivity on during your dialysis sessions. That is not an easy environment to make others laugh, good for you! 🙂 It is nice to know you are always reading and that my blogs are the first thing you read in your email. Thank you for brightening my day! xo
HUGE CONGRATS FROM YOUR CANADIAN FAMILY
Thank you SO much!!! I love my Canadian family! Very grateful for all of you! xoxo
Ditto to what the others have said! PKD will never beat you! You have turned a negative into a positive and you truly are a PKD warrior! God speed! Thanks so much for all you do!
Your friendship means a whole bunch! Thank you for supporting and encouraging me! I hope you’re doing well and your New Year is off to a great start! xoxo
It’s my first time to read your posts I wish I could read your story from the start ..
I’m a PKD patient and I’m the only PKD patient I know..
I knew nothing about the disease ,I didn’t know I even have it or had any back pain at all..
I was just having a check up when I had abdominal ultrasound and found that my 2 kidneys are loaded with cysts…
My creatinine level is almost normal and I feel no pain till now
But I don’t know what ‘s going to happen next..
I loved your post and made me feel that there are people who are living happily after kidney transplant ,
Keep going !!
You made my day !!
Hi Ghada!
I’m so glad that you have found my blog! 🙂 Actually, if you want to, you can go to pkdwillnotbeatme.com and read the other 199 blogs if you want to. 🙂
Wonderful that your creatinine level is pretty normal and you have no pain, yay! I hope it stays that way for a very long time. How old are you? I’m 33 and was diagnosed when I was 10.
So happy you loved my post and yes there are a lot of people living happily after kidney transplant. That is one of my goals, to show that one can live a fulfilling life with PKD and a kidney transplant.
Thank you for your comment and making my day! 🙂 Please know you are not alone and I’m here if you have any questions. If you decide to go back and read my previous posts, I hope you enjoy them. Take care!
I love your positivity(is there such a word). I want people to know that you can live to be 78 with PKD. My big belly annoys me when I am shopping for clothes. However my creatinine reading is normal and my bouts with pain has not been too bad. So I am thankful and look at life as a blessing. Stay well.
Thank you, Peggy! 🙂 I appreciate you sharing your positivity! 🙂 Wow, 78 and doing so well! Amazing! My mom is 60 and doing well with her original kidneys and no need for dialysis. I hope I can some day say she is 78 and still doing well. It is good for us to hear stories like yours. Thank you for sharing. Wishing you all the best!
You are a shining star Valen. Keep shining!
Thank you my dear friend!!! xoxo
My husband has been diagnosed with PKD last May. His mother had PKD so he knew the chances were high to inherit the disease. He recently has been experiencing terrible pain in both hips, to the point where he can barely walk. Only thing that seems to help has been prednisone packs and NSAIDs, which he isn’t supposed to take. His last bloodwork done in October indicated his GFR was 67, not too bad. Anyone else experience this debilitating hip pain? Thanks!
Hi Mary Ellen,
I am very sorry to hear of your husband’s debilitating pain in his hips. I had excruciating kidney pain, but never in my hips. What does his nephrologist say about this? I would be curious to learn this to become more educated to help other patients. I hope others read your comment and can share some feedback. Hoping you can find answers to help improve his pain. Take care!
Thank you, Valen! This was absolute perfection. I’m going to focus more on the healthier type of PKD — POSITIVITY, KNOWLEDGE & DETERMINATION!
XOXO
Laura
Hi Laura!
I’m smiling big after reading your comment! Your sentiments mean a lot! Thank you so much for joining me and focusing on the healthier type of PKD! 🙂 PKD Will Not Beat US! xoxo