PKD Will Not Beat Me is my motto, my mission and my passion. It’s how I stand up to our disease and show it who’s in control. It is how I lead my life and I try to encourage others to incorporate this theme into their lives. These five words are a constant reminder that I am strong and that this disease does not define me. Although I look healthy on the outside, I have more than 45 inches of scars that trace my PKD and health journey, as another remembrance that I fought the good fight and will continue to do so. I have and continue to stand up to PKD by equating those three letters to, Positivity, Knowledge and Determination.
I believe our bodies follow a positive frame of mind. A pivotal moment in my life was in the beginning of 2002. It was a few days after both of my kidneys were removed. I had a bleeding vessel and four bleeding ulcers in my stomach. They called my family to my hospital room to say their goodbyes because they did not think I would survive the next emergency surgery. I never thought I was going to die nor did I talk about death. I truly believe if I had given up mentally, my body would have followed suit.
It is virtually impossible to be positive all of the time. I have learned the value of letting your emotions out, and then getting back on track right away. I remain positive by being open-hearted, realistic and hopeful.
This component is invaluable. I have learned to be careful with using search engines on the computer. When a new health issue arises, I stay away from chat sites and go right for the facts on sites like the PKD Foundation. I gather as much information as I can, but do not obsess over it, because I trust and rely on my team of doctors for the answers.
Between doctor appointments, if it is not an urgent matter, I keep a list of questions and then I ask my nephrologist/doctor when I see them. I leave with more knowledge and feel more empowered knowing I am taking care of my kidney/health the best I can, to keep my transplanted kidney healthy as long as possible.
You have to want a good life. You are in control of having the healthiest life you can. You’re not going to feel great every day, but you have to keep moving forward every day. Positivity and knowledge will in turn fuel your determination and desire to take that next step, to go to your doctor, get the necessary blood work and be your own best advocate. You can do it.
Positivity, knowledge and determination are my three healthy weapons that help me look our disease in the ‘kidneys’ and say, ‘PKD Will Not Beat Me!’ We all battle this disease differently. Some of us beat this disease by putting two feet on the floor in the morning and going to dialysis. Others may live their life doing strenuous activities like marathons. Whether you are reading a good book or jumping out of an airplane, you are beating this disease if you are facing it with positivity, knowledge and determination. I like to think that I was born with this positive, old soul to help me along my journey. However, I know that all of us have positivity in us; some of us just need a little more encouragement to let it shine. Believe that you can and you will shine.
How do you not let PKD beat you? Please share stories and photos by using #PKDwillnotbeatme.