Do you remember the days when you went to the playground as a child? One of my favorite things to do was to go on the carousel and have someone push it until it began to go so quickly that I was dizzy and felt like my whole world was spinning out of control. When I was first diagnosed with Kidney Disease I believed it would just continue to be a small factor in my life. One day that changed and my whole world began to spin. My disease began to progress and I began to feel that things were spinning too fast. I decided then and there that I had to take control and be the one who made the decisions that were right for me.
In order to get things back to where I wanted them, I needed to put together a Support Team that would be my “Go To” people. I had to carefully select my Team because they had to be people I trusted and knew I could confide in when I needed answers, help or just a shoulder to lean on. Knowing who I could rely on made my world a stable and safe place. Finding these people and putting together my Team has been the best decision I have made about my care.
I spoke to my family about my disease, treatment and fears. Having my husband, mother and sons on my side was not only a support, but a comfort. My family needed to know what was happening and through their questions and concerns, I actually became more educated. I had to be able to knowledgeably discuss what was happening to me and what was being done to treat the problem. This part of my Support Team has been invaluable to me and never changes.
Finding a medical team that I trusted was essential to me. My Nephrologists have been the backbone of my care. Finding a doctor who listens to me and takes my concerns and fears seriously has allowed me to ask questions and request information that I would not ask if I did not trust them. They have listened to my cares and concerns, dried some tears and encouraged me every step of the way. You could say they have been my guide as I have navigated the path going from routine visits to beginning Dialysis. I also have a wonderful General Practitioner who consults with my Nephrologists to ensure that all of my treatments are safe and any medications are kidney friendly.
After I began Dialysis, I included in my Team my nurses and Patient Care Technicians. By being open about my concerns and questions, I have been able to make Dialysis a routine rather than fearful thing. Clearly articulating any discomfort, concerns and questions, has made my relationship with them strong and makes me feel secure. The other Support Staff at the Clinic have also become a part of my Team. Having my Dietician, Social Worker, Clinic Director and office staff on board means that I have resources for every need that I have concerning my treatment. It is essential that you have professionals that you trust and feel confident and safe when they are treating you.
Along with all of the family and professionals who I consider as my Team, I also have found a select group of friends and colleagues that I have confided in. These friends and colleagues help me with the day to day activities that can seem overwhelming when you are tired or just having a “Kidney Day”. These friends and colleagues are ones I trust to respect my privacy and not make me feel that I stand out due to an illness. Feeling normal is important and knowing that your friends and colleagues are accepting helps make the world not spin out of control.
Now my carousel spins merrily around and doesn’t make me feel as if I’m going to fall off. Taking charge of my disease by putting my Support Team in place gives me the confidence and strength to continue to keep moving forward. As long as I have my Team in place I know I can face and defeat any challenge that is in my way. I love being the one who controls my disease and not having my disease control me!
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