The Kidney Two Step…
Hello kidney warrior friends!
Looking forward to the weekend here in Kansas City. It’s super hot and the pools are full. I love the long days and the fireflies and all of the different birds and the gardens and picnics and summer activities.
Lately I’ve been trying to “live between the appointments” also known as, compartmentalizing my disease and making time for FUN. I’ve been stuck in a rut (since the Transplant Evaluation) of focusing on kidneys, blood work, doctors, numbers, fluids…. This is more challenging that I realized…. EATING THAT ELEPHANT bite by bite takes a toll.
It’s important to remember those around me…. and give them time and energy that I can. Life continues, kids graduate, people get promotions, babies are born, flowers bloom. I want to be a part of the fabric of friendships, family and connections I’ve built & nurtured from so many years on this blue planet. I don’t want to be “KIDNEY DISEASE GIRL” who all she talks, thinks and focuses on is her disease and no one else’s struggles. When you see doctors more often than your friends, it has a tendency to happen. When I spend hours on YouTube trying to dissect these blood tests, I’m not giving myself the freedom to go, do and focus on other things.
Before IgA Nephropathy, I was a scuba diver, paddleboarder, part time mermaid. I was ROOM MOM in grade school, I organized and fundraised for Crohn’s Disease and my daughter’s elementary school. I went to concerts & parades and picnics with friends. I traveled to weddings and family visits. After struggling through bouts of illnesses or rounds of antibiotics, I quit having the energy to do all those things.
I was approved for Transplant in May, and I’ve been having challenges with my medical insurance coverage. So I’ve gotten completely wrapped up in the process…. fighting an insurance company’s denial, following up, filed a complaint with them.. Fun times fighting with an insurance company…. it’s a DAILY PHONE CALL!
As I become surrounded & buried in KIDNEY, I want to plan for the AFTER. I need to get out of the RUT.
Did you know I need a kidney?? Do you know anybody who might be willing to be TESTED? First step is an interview!! I’ll keep asking.
In this journey, progress feels like Two Steps forward, One Step Back. I know many of you feel the same challenges whether it be KIDNEY STUFF or a chronic illness or a difficult diagnosis. I guess what I’m learning and what I want to share with you (besides asking for some to donate a kidney) is that life throws things at you…. we can wallow or we can build a Phoenix from the ashes. It takes courage & determination to fight thru the challenges.
I love summer, I love this planet and the people on it that inspire & delight my soul.
I won’t stop The Kidney Two Step, but I’m adding some different dances.
ONE EXCITING THING I’m looking forward to in a couple of weeks….. It’s 2022 Spark Conference for IgA Nephropathy later in July. I am so so so excited to participate and get to know more fellow warriors. My daughter Olivia will be joining me for the drive and the conference. I’m so blessed she wants to spend time like this with me.
Thank you for sticking with me and reading along. I’m hopeful I can start opening up comments. I know we all grow by sharing & caring.
Please share this post and website. If you have questions about the Kidney Donor process, feel free to reach to me via phone or email. Christina Self is the contact at the University of Kansas Hospital System.