Loving Life

33Growing up, I never imagined what life would be like in my 30s. I never had a grand plan for how my future would unfold. I think my health issues kept me grounded with the belief that each new day was a gift, so why set expectations?

It’s hard to believe that 14 years ago my family was called to say their goodbyes before doctors performed emergency stomach surgery on me for internal bleeding. Now, here I am, a grown woman turning 33 years old today.

Mind Over Matter

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MINDNever underestimate the power of your mind. Our days and lives are driven by our thoughts; our emotions can help or hurt us. We can be full of such happiness that we feel as though we are going to explode with excitement, or our thoughts can get the best of us and make it hard to push forward. When living with chronic pain and health issues, it is important to focus on mental strength just as much as physical strength.

The Art of Being Present

As I forge ahead on my path of discovery, I continue to learn the importance and the art of being present. Being in the moment is mastered on an individual basis and is ever-evolving – it can be difficult to accomplish with technology, the fast-paced world we live in and our day-to-day stressors. Being present is something that takes focus, our own initiative and commitment to make it happen.

My path of discovery

Noah & ValenThe emotions connected with the end of one year and the start of a next are intriguing to me. I can tell I am getting older because the years appear to be passing faster than they did when I was a child. I love that my start of 2016 began snuggled up on the couch with Noah, full of gratitude and wonder for what the new year will hold for us. When the clock turned midnight, I had an indescribable sensation; I was thrilled to be alive and well and celebrating the next chapter in our lives together.

Silver lining to my PKD

I love this time of year as we are surrounded with friends, family and fun festivities. Throughout the holidays, there is a special feeling of love and friendship in the air. Decorations, twinkling lights and loved ones fill our homes with beauty, warmth and positivity.

After spending many holidays sick in the hospital due to PKD, I have a heightened appreciation for good health and being close to loved ones this time of year. While PKD may have taken away some things in my life, I believe it has also given me amazing opportunities and introduced me to incredible individuals. Today I want to focus on one friendship of mine that reflects a positive of having PKD.

What’s in your suitcase?

View from airplaneAs a PKD patient and transplant recipient, going on trips takes extra organization. I joke that half my suitcase is filled with medical items such as my blood pressure cuff, thermometer, medical journal, ice packs, snacks, first-aid supplies, and medicine. As the year winds down and traveling picks up, now is the time we start to think about germs more than usual. In order to have healthy, safe travels, I’ve put together a few tips and tricks that work for me when I take a trip. I hope they help you, too!

Pre-travel planning

A caregiver’s perspective

Valen’s husband, Noah, offers insight into what it’s like to be a caregiver to a PKD patient.

Noah & Valen at Sac WalkI sat with my face in my hands as the fifth person tried to start an IV in Valen’s delicate veins. She was trembling vigorously, staring at the ceiling; her tired eyes were red and glassy. She winced as the needle pierced her skin for the eleventh time; tears again welled up. We had been at the hospital for several hours at this point and we were both exhausted, neither of us had much left to give. This had to work. I waited with baited breath and finally heard the words I had been waiting for, “I can taste the saline!” Valen exclaimed. A wave of relief came across me and my eyes welled up with tears, the IV was a success.

Unsung Heroes

caregiver_dad“Mom, my head hurts!” As a 5-year-old, I stood in the kitchen repeating those four words several times, each time louder, until I fell to the floor and had my first grand mal seizure. This is the day I became a patient and my parents became caregivers. Neither role is easy.

November is National Family Caregivers Month and today I am recognizing the three caregivers that have helped me become the strong, positive PKD patient I am today.

The reSEARCH for a cure

On our PKD journey, patients and researchers search for many answers, all with the common goal of discovering a cure. We patients may search to find out why we have this disease, what we can do to lead the healthiest lives, where we can obtain the best care or when we will see the day a treatment is available for us. PKD researchers search tirelessly to learn every facet of polycystic kidney disease and discover the long-awaited key that will unlock finding a treatment or cure.

grandmother who passed from PKD

Valen’s grandmother passed away from PKD.