When friendships and connections unfold organically in life, we know they are meant to be. I believe we cross paths with people in life for a reason, but it may take time to understand why. However, not everything in life comes to us; we may need to reach out and seek what we are in need of, whether that is the support of like-minded people, inspiration or friendships from those who understand what it is like to live with PKD. I was reminded of all of this at our recent PKD Sacramento Chapter meeting for our upcoming Corks for a Cure fundraising event.
A few months ago in November, I was getting prepped for a back injection procedure in hopes of relieving some of my chronic pain. An hour and a half passed with more than ten failed attempts to place an IV in my arm—that’s 90 minutes with several different nurses wrapping my arms in warm blankets, tying a tourniquet around my arm, looking for a vein, prepping the vein, inserting a needle in it, hoping to see blood return for a sign of success and instead seeing fluid build around my vein, indicating that it blew.
“The pain taught me how to write and the writing taught me how to heal.”
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.
Giving comes in all forms. This holiday season, I can’t help but reflect on how much my parents always gave to make Christmas so special. My parents went all out with decorating, presents and making sure it was a magical and memorable day. The best gift they ever gave me, though, and still do to this day, is love.
Sometimes we receive gifts or give ones that can’t be wrapped, but their impact is immense and forever lasting, like my kidney transplant. I’ve never seen the kidney that my donor Sally gave me, but I feel and see its influence every single day.
“When one door closes, another opens.” This saying has felt very fitting for Noah and me recently. The door that closed was the townhouse that we rented for six-and-a-half years, and the one that opened was the beautiful door to our first home.
Noah and I went back to the very spot we got married in Yosemite National Park to mark our 5-year wedding anniversary. When taking trips, I constantly hope that my health will cooperate and I won’t have any medical “hiccups” that will alter our plans. I’m sure other patients share the same sentiments. However, I will never live in a bubble—my desire to experience and soak in life as much as possible is far too strong for that.
This is part of a special series for the month of November, where we share with you what some of us in the PKD community are thankful for this year.
“My mom never told me that she loved me.”
My heart sank when my 93-year-old grandmother shared this in a recent phone conversation. My grandma and I had a meaningful talk about life and the importance of love. We were discussing my recent health episodes and I told her how thankful I am for the love that surrounds me.
It is nice to have wish lists in life, but when it comes to our doctors it is important to get not only what we wish for, but also what we need. Therefore, I think it is important for us to have a doctor checklist. I’ve been seeing doctors since I was five years old, and I am now 33. I am big on first impressions and also the connection between the doctor and the patient. Doctors can be just as conditional as food and places, just because one person loves a doctor, doesn’t mean everyone will.
In life, we are often encouraged to follow our heart and listen to our gut. It simply means to trust our intuition. I believe this is a big component of caring for ourselves and making wise health decisions. After living with medical issues for so long, we become very in tune with our bodies. As PKD patients, we learn what kidney pain feels like, if we are having a cyst bleed or need to go to the emergency room. It is important to listen to our bodies and know when we need to see our doctor or go to the hospital. For transplant recipients these decisions can mean life or death.
My neurologist recently informed me that the common triggers for seizures are low magnesium, lack of sleep and stress. At my last appointment, my doctor asked if I felt stressed. I chuckled inside because when you are a patient, especially with multiple health issues, stress seems to be a natural part of your journey. I believe this applies to everyone in life. However, we have the power to make choices to limit some of our stress, and also give ourselves moments of relaxation and reprieve from the weight on our shoulders and worry on our minds. Balancing the stress, is an important part of our journey as we strive to live as positively and healthily as possible.