When hearing the words polycystic kidney disease, it is easy to think that we endure a disease that only affects our kidneys. However, PKD is far more than that. We can face issues like aneurysms, diverticulitis and high blood pressure, to name a few. Living with PKD means we are likely managing and dealing with several things along with keeping our kidneys and the rest of our body healthy. Plus, there are patients like myself who have additional health challenges that are completely unrelated to PKD. For instance, I have epilepsy and scoliosis, which has led to multiple back surgeries and chronic pain.
I’ve been able to best endure my array of health problems by finding a positive outlet amidst the trials and tribulations. This doesn’t always unfold right away. When I was fighting for my life on dialysis, it was challenging to find many positives. Post-transplant, though, I found a healing aspect of living with PKD: sharing my story. Helping others along their journey has healed many of my own wounds.
My scoliosis appeared in 8th grade when I was diagnosed with a severe s-curve and needed surgery. I did well post-surgery, until three years ago when one of my lower discs herniated. Since then it has been a roller coaster ride with cortisone shots, 22 months of physical therapy, surgeries, acupuncture and massage. Basically trying all I can to help my back and the daily pain associated with it. Unfortunately, my back is so complicated from the rods, fusion, arthritis, degeneration, disc herniation, instability, etc., that the pain will be a lifelong issue to maintain.
It was not until a year ago that I could find any positives through all of the pain. My surgeon suggested I try Pilates. I was fortunate to find Studio Six Pilates with its amazing instructors, Shelby and Brooke. Both of them and Pilates have been the positive, physically and mentally, through this difficult health trial. Over the past year, they have worked with me one-on-one and have helped me so much. It is incredible to see what my body can do today compared to a year ago in regards to strength, movement and flexibility. I have seen more improvement with Pilates than I have with any of the other avenues I pursued to help gain strength. What I continue to battle is daily pain and finding a balance of doing enough to continue getting stronger, but not too much to set me back.
I’ve been so inspired by Pilates that I’ve decided to start a new journey: the path towards becoming a Pilates instructor. This opportunity unfolded organically and I feel that I am meant to pursue it. I began training at the studio where I take classes. I will need to accumulate 450 hours of comprehensive learning, which includes observation, student teaching, etc., all while learning anatomy and all about Pilates before I can take an exam to become certified.
The fun part of life is that you never know where it will lead. I’m happy to have found positivity through this difficult part of my life. Just like with PKD, I will be able to use my first-hand knowledge and experiences to help others heal, while I myself am healing. It also gives purpose to the pain and a way to give back, which makes my heart happy. I am excited to learn all I can to help myself lead the healthiest life possible, while keeping my body strong, balanced and aligned, and be able to do the same for others in need.
There can be a silver lining to challenges in life. They may not present themselves right away and we may need to search for them, but I believe they are there and that they need to be found to help us lead a happy and healthy life.
What positives have you found through your health journey?
That’s my girl. I do believe I mentioned
Pilates as I have been doing it for 23 years. Good for M.S. too. And now you will be the instructor. Bravo!!! and xoxo
Dear Sandee,
I love that you do Pilates too! So happy that you are benefiting from it as well and that it is good for your M.S. I am a huge believer in it and have seen how it positively benefits so many. I admire your strength and determination! xoxo
Congratulations on your decision to become a Pilates instructor, Valen!!! You will bring in all the compassion, understanding, and positivity to make a difference in your students’ lives.
I am sure your class will have a wait list to get in!!!
You go, Girl!!!
Dear Karin,
This made me smile! Thank you so much for your sincere encouragement and for believing in me! It sure does mean a lot! Thank you for supporting me along my journey as I continue to try and use my challenging experiences to help others. I look forward to the day we meet! Hugs! xo
OK do know a woman who has back problems and told me pilates is what has helped her. Glad you are pursuing it further. You are an inspiration!
I do know a woman who has back problems and told me pilates is what has helped her. Glad you are pursuing it further. You are an inspiration!
Dear Margie,
That is great! I’m so happy to hear that Pilates has helped her too. I’m so inspired by its benefits for not only myself, but everyone else I’ve met at the Pilates studio. It has helped me so much and I’m looking forward to learning all that I can about it so I can take the best care of myself and help others along their journey. Thank you for your kind sentiments!
That’s great that you have found this interest. It’s difficult to stay positive, especially as PKD progresses. My personal observation is increasing joint pain in knees and rotator cuff. I was very active and exercised frequently, however this disease is so omnipresent and creeps into your life incrementally. As your kidneys become enlarged it then is more difficult to bend at the waist. I sincerely hope your experience is more positive than mine. It’s so difficult to explain to a nephrologist how your symptoms impact your life. I get it, “Don’t dwell on symptoms”.
Hi Eugenia,
Thank you for sharing and your kind sentiments. I can totally relate and sympathize with huge kidneys and the grand impact this disease can have on our lives. My football sized kidneys were removed when I was 18 years old. I had horrific pain from my kidneys and was happy to have them removed. I did dialysis and received a transplant almost 14 years ago.
It saddens me to hear what your doctor said to you. Our symptoms impact our lives greatly and it is important for us to have doctors that understand this and care for us in the way we deserve. Have you ever thought of seeing another nephrologist? You deserve the best care and compassion as you navigate your path with PKD. I wish you all the best!
Thank you for your continued messages of hope and encouragement. It is really inspiring and sometimes much needed. This disease makes you do things you thought you would never try! I too have taken up yoga and Pilates and love it. Never would have tried it had it not been for the PKD
Hi Tyler!
It is an honor to share my journey and I greatly appreciate your support and reading my blog. Your kind sentiments mean a lot!
So fun that you do yoga and Pilates, too. I love it as well. It is very therapeutic for me. Grateful for these healthy outlets on our PKD journey. Take good care!