PINK

“Pink is pretty. Pink is bright. I made a decision to live and fight.” – Breast cancer survivor slogan

On the PINK groupevening of February 4, 2010, I stood at the head of a long table in a room at the Elmwood Mansion in York PA, about to share my journey to the P.I.N.K. (Power In Knowledge) group. Surrounding the table were breast cancer warriors. Some of the women were in remission, while others were “in the trenches” battling cancer. Clothing did not reveal those who were in the midst of breast reconstructive surgeries. Most of the women had hair, while a few did not. From my viewpoint, I would have never known these women were battling anything. They exuded strength and happiness that was quite commendable.

A Look at the Past, A Glimpse of the Future

end pkd (1)Were you recently diagnosed with PKD? Living with PKD? Have a loved one with PKD? Looking for hope and inspiration? Welcome to PKD Will Not Beat Me! My mission is to provide Positivity, Knowledge and Determination as you navigate your individual path in life.

This is PKD Will Not Beat Me’s first blog post shared on PKD Connection, however PKD Will Not Beat Me launched on June 21, 2012, with its first blog post Positivity – Knowledge – Determination. Today marks my 112th blog post.

PKD Connection

“All we are really looking for is connection, direction and meaning.” – Lucia Steele

Living with PKD is a life of acceptance, fear, patience, strength, love and change. We yearn for connecting with others that ‘get it.’ We want to be given direction on how we can get answers on our health and feel better. All the while, we desire a life full of meaning, despite the challenges and changes set before us. It is important to look through positive lenses knowing change can reveal how strong we are and what we are capable of accomplishing. Change can lead to wonderful new adventures. October 13th kicks off a new venture for the PKD Foundation and the PKD Will Not Beat Me blog. The 13th is surrounded by good omens: my mother-in-law’s 60th birthday, the 12-year and 2nd month anniversary of my kidney transplant, and the launch of the new PKD Connection blog.

Breathe Deeply

Breathe Deeply
Sometimes it is during our quietest moments we are able to reflect and learn the most about life and ourselves. When in our normal routines, the weeks and months seem to race by. Last week reminded me that when our pace of living slows down and we get away from our normal schedules, we are able to breathe deeply. Time seems to slow down allowing us to appreciate everything on a grander scale.

“Travel not to find yourself, but to remember who you’ve been all along.” – Anonymous

Celebrating life & love

The Facts On Organ Donation

Donate Life “Are you an organ donor?” I recently asked this, repetitively, over the course of two hours. It was an enlightening experience to volunteer at the Sierra Donor Services Donate Life booth for the DMV Wellness Fair. People would stroll down the line of booths and as they approached ours, me and the two other volunteers would greet the individuals and ask them, “Are you an organ donor?” Hearing their answers and seeing their expressions was eye opening.

Circle of Love

Let’s rewind to December 24, 1958. My mother-in-law, Pam Keefer, was four years old. Her parents and relatives celebrated Christmas with great enthusiasm and joy. Pam said Christmas Eve was a big merriment spent in Gladwyne, PA at her grandparents’ home with her aunts, uncles, grandparents and parents. The spirited evening was wrapped in gifts and the air filled with the sound of Christmas carols. Following this jolly eve of Christmas at Pam’s grandparents in 1958, her parents, Pam and her sister began their voyage home.

Shake It Off

Share a little sunshine “In the 15 years I have been a therapeutic massage therapist, you are my first client who has not complained about your health issues but rather shared them with me.” Since this insightful statement was said to me, it has entered my train of thought numerous times. I love how someone that I met for the first time and spent two hours with can discover and share such a vital part of who I am. There is much validity in her observation, as I do not complain about the things that encompass my life, but rather share them.

Punt PKD

There have been numerous times throughout my PKD journey when I have been in a medical facility, such as the emergency room, and have had to explain what polycystic kidney disease is to a staff member. On several occasions, while providing my health history and informing the medical staff that I had a kidney transplant, they have responded, “So you received two kidneys?” I informed them that a kidney transplant recipient only receives one kidney. I am puzzled by the lack of knowledge of PKD. Why is it that not many people know what PKD is, in spite of the fact it is one of the most common, life-threatening genetic diseases?

Keep Plugging Away

“You woke up.
You got out of bed.
You got dressed.

These may seem like small things. But when you’re living with a chronic illness, these small things may take enormous effort and determination.

Not everyone will understand your accomplishment today, so I just wanted to take a moment and say…

‘WELL DONE, MY FRIEND.'”

pain

I have not had a day without pain since the afternoon of February 1, 2013 when my L4/L5 disk in my back herniated.  Over the course of the past 574 days, I have hurt in some capacity. I have been on a roller-coaster ride of excruciating, throbbing, and aching pain.  The last time I experienced hurting to this degree was from my original polycystic kidneys, which were removed more than 12 years ago.

The Tides of Life

As the tide washed in, the Dutch Tulip Man faced the ocean:
“Conjoiner rejoinder poisoner concealer revelator. Look at it, rising up and rising down, taking everything with it.”
“What’s that?” I asked.
“Water,” the Dutchman said. “Well, and time.” – Peter Van Houten, An Imperial Affliction (from John Green’s book, ‘The Fault in Our Stars’)

mom