When I began dialysis, I was in for a fight for my life. I acquired pieces of armor to help me.
I earned a helmet by thinking of and using ways to help myself. Body armor came through my research, reading, and work I do within the dialysis community. The medical team is a sword to fight my kidney disease. Family and friends are a shield of support. Power ups to my entire armor strengthen me. I put this armor on to fight kidney disease every day.
The helmet I wear helps with mental challenges end stage renal disease brings. ‘I dialyze to live; I don’t live to dialyze’ is my mantra after twenty years of dialysis. Things that make me happy have become a priority. I throw prayers to the universe. Getting out of the house with family and friends helps when the same four walls close in. Sometimes taking life one second, one minute, one hour at a time is all I can do to fight.
The armor that protects my body is made up of the things I do to learn and share about renal disease and dialysis. My knowledge comes from research, reading, and talking to people. I enter the RSNhope.org essay contest every year. My blog http://lifeonthelist.com is about being a permanent dialysis patient. I visit websites and Facebook groups to talk about patient experiences. I am an administrator for Ihatedialysis.com. I became a ‘subject matter expert’ this year in my dialysis center working with ESRD Network #18 to disseminate information to patients.
I use my medical team as a sword in the battle against end-stage kidney disease and dialysis. I attend every dialysis treatment scheduled. I stay for the hours I am on the machine. I tell the center doctor about any problems concerning dialysis. We work together to solve problems. I go to my medical appointments outside the center. There are six doctors on my team. I try to see each one at least every six months. I take my medication as prescribed and pay attention to the side effects.
The shield I use to protect myself in battle is my family supporting me. My sisters help whenever I call for a ride to dialysis. My family comes to sit with me when I am in the hospital. I get hospital psychosis sometimes and their visits help me to stay grounded. They bring meals to my house when I am ill. We celebrate holidays by sharing the cooking and cleanup. We take trips that get me out of the house. They allow me to lean into their strength.
My husband is my strengthening power, ‘a power-up’, to my armor. He is the biggest and best support in my life. My husband chauffeurs me around to run errands. He takes me to dialysis and arranges the nest in my chair at the center before I sit in it. He helps me believe I am beautiful even on my ugliest days. He puts up with my mood swings. When I need someone, he is always there. This man is the love of my life.
My advice is to put on the armor you use to fight kidney disease every day. Have ideas and plans that help with your disease. Communicate with other people on dialysis to share stories and get information. Go to your dialysis and doctor appointments. Gather a support network of family and friends.
Armor on! Ready! Set! Fight to Live! Dialyze to live, don’t live to dialyze!