As a patient, one must possess a multitude of skills. We become our own administrative assistant by scheduling our medical appointments and the phone calls, paperwork and documentation involved in coordinating our care. We fill the role of a medical biller as we decipher, pay and file our bills, and keep up-to-date on all of the details with our health insurance. Our daily regimen of medicine looks like a miniature pharmacy and we become our own pharmacy technician as we coordinate and order our medicine. Going to doctor appointments, getting blood work performed and taking the best care of ourselves consumes a lot of time. This is just a sliver of what patients must handle. No matter how consuming our health challenges may be, though, we are way more than just patients.
We all have varying interests that make us tick. Such as different goals, pet peeves, talents, inspirations, hobbies, personality traits and things that bring us great joy. It recently dawned on me that when I am asked to share a little bit about myself, I instantly think of my PKD and transplant. This is not necessarily a bad thing, because these are a big part of my life, and I am very actively involved in the PKD and transplant community. However, there is a lot more to me than my health issues. I thought it would be fun today to take the patient characteristics out of the equation and talk about what makes us who we are. Who am I?
I am a grateful daughter. My parents are extraordinary people who gave me the best environment to mature into the happy and strong woman that I am today. I am a blessed wife to share my life with Noah. I am a faithful and supportive friend. I am a
soulful writer. I am an adventurer at heart. I am an old soul. I am a mom to our sweet cat, Mister KaliKat ManCoon, who brings me great happiness. I have an eternally hopeful spirit and put as much joy and exuberance out into the world and have received such amazing opportunities in return.
I believe my core personality traits have been with me since I was a little girl. I always had the utmost respect for my parents and concern about the feelings of others. I was quiet and I enjoyed the company of older people. My neighbors were like grandparents to me and I would hang out with them. My ‘grandfather’ Walter taught me how to read and do short and long division. I really enjoyed his company and I was always overly prepared for school, thanks to him. As a little girl with an old soul, Walter was a perfect neighbor and grandfather figure. However, the pie that his wife fed me every day did not help my growing little belly or my appetite for my mom’s dinner. Oops! I loved to use my chalkboard to teach my stuffed animals, which I would position in a line on my bed. I interned as a kindergarten teacher in 11th and 12th grade and had the desire to become a teacher.
Here are some random thoughts about myself, some silly, some serious: I have a goal of starting my own non-profit. One of my pet peeves is when people chew with their mouth open and consistent noises like the ticking of a clock. I sang alto in my school choir and participated in a couple of school plays. I played piano for a short time and was really good at it, and I regret not keeping up with it. I am very good at memorizing and enjoyed math and numbers. I am left-handed and double-jointed. Coffee drink of choice is Starbucks, tall, white chocolate Frappuccino, non-fat, no whip and double blended. I love cooked sushi rolls and ice cream. Nature inspires me and I love to travel, explore and hike. There is nothing more peaceful than the sound of water and watching the light glisten on water.
So, when asked to share a little bit about ourselves, it is important to realize that we are all individuals who started as young children and grew up into the strong fighters that we are today. We are wives, husbands, parents, etc. who have goals, inspirations, hobbies and certain special characteristics that make us who we are. Many of us deal with health issues on a daily basis, which serve as constant reminders of our PKD, but let’s never lose sight that we are way more than just patients.
How would you respond when asked, “Who are you?”
Love your post today! Have a great weekend!
So happy to hear this! 🙂 Hope you have a great weekend, too!
You are an inspiration to me. Thank you for sharing YOUR story… Life, of which there is So Much More. Beauty shines in your smile!
Thank you so much for sharing your super sweet thoughts. You have brightened my day! Thank you! 🙂 <3
Lovely post! I am also so much more than a patient and person with PKD. My story is at http://www.morethanpkd.com
Thank you very much Vanessa! I am glad to see that you lead a life displaying that we are way more than just patients! 🙂 Thank you for sharing your site. Wishing you the best!
I am a daughter, wife, mother, sister & friend. I am a transplant patient persevering through life being thankful for every day to enjoy all my roles and to be kind & helpful to all I meet. Having PKD and having a transplant inspired me to be more grateful for everything I have in my life. You are such an inspiration too! You will start that non profit, I’m sure of it!
Beautifully said, Lana! Makes me happy to hear your positivity and gratefulness. Wishing you all the best with your transplant and health. Thank you for your kind words and encouragement. Hugs!
I am new to this page, wife and mother of PKD Patients, newly diagnosed. My husbands diagnoses came a year ago, after herniating discs. My 7 year olds came last month after updating her medical records.
What is hardest now, is that she goes for an MRI to determine if she also has angiomyploma, tuberous sclerosis. Also a kidney disease.
Trying to adjust diets to these new found issues, with a child who has many health issues and 14 specialist.
I was glad to find this page, and reading your story really has helped me try to stay more positive.
So glad that you found my blog, Kim. It takes great strength to be a caregiver and I admire you as you care for your husband and daughter. Wishing you and your family all the best. Please know that you are not alone and let me know if there is anything I can help with.
Hi Valen,
Happy Sunday!! Once again, you have written a heart-warming piece. Thank you for sharing:)
Who am I? I am so much more than a life changing diagnosis. I know that, as well as those closest to my heart. Realistically, my illness does not always permit to be my prior self. Lifestyle, pain and belly appareance, among other things, changed my earlier self. At times it is frustrating, during others it gives me anxiety and fear.
I choose not to share about my PKD with some because I don’t want to be treated as a sick person. I want their “how are you?” to be about me, not about the illness.
By the way, swimsuit shopping is extremely frustrating for me!! Anyone else out there that has been struggling with that this Summer?
Let us stay strong and go forth!!
Best:)
Hi Karin!
Thank you for sharing your positive spirit, who you are and also the realistic things with PKD that we must deal with. Sending strength and love your way!
This is great. We sometimes forget we are more than PKD. I am a mom of 3 boys and a Nana to a beautiful little girl! I am very busy along with taking care of my PKD.
I love this one very much!!!
So happy to hear that you love this one Wendy! You are so much more than PKD. I hope you and your family are healthy and doing well. Big hugs!
thankyou valen for sharing about yourself it was all very well said. we ARE more than just patients..actually others forget i even have the disease ..i am glad to know you thru your stories and your blogs thanks for helping all of us and opening our eyes . im so glad you put in your a mom to Mister that was soooo cute, i feel i raised two wonderful young adult sons who are kind hard working thoughtful and love helping children. i so love animals and take pride in them as well. im lucky to have family where as my adopted family is in washington state i am in wisconsin. anyway im doing all i can to help my situation with pkd with diet exercise etc. thanks again for all you do
Hi Dominique,
I appreciate your friendship. I am thankful for your support and sweetness towards MR. Animals are the best! Thank you for sharing about yourself and your kind words and support of my blog and my journey. It means a whole bunch! You are doing an awesome job taking care of yourself. Hugs!