Life is for the living. Absolutely. I don’t know about others, but I know when I was told I had chronic kidney disease I thought I could manage with the help of the Drs and by following all “the rules”. In the early period, I was in hospital for about 2 1/2 months. I remember being very weak, very edematous, had lost muscle mass because of the amount of protein I had lost through the kidneys. I remember having to take a large dose of prednisone because that was the treatment for gross proteinuria. In case you are not aware, prednisone is a catabolic steroid, which means it “breaks down” things in your body. You are also left with the ol’ “moon face” look which is not too becoming: think puffy face, abdomen that looks pregnant, arms that look like sticks, and legs that are so swollen walking is a real effort and your feet are painful. There is so much fluid in your body that you can’t even finish a sentence without being short of breath.
I had gone from a healthy, young new mom and capable RN used to caring for others (helping them out of bed, helping them off the toilet, helping them wash and dress) to being one of them. “Them” meaning those that needed care and help, those too weak or too sick to manage on their own. How wrong did that feel?? This was the first time I thought I might die. I remember laying in my hospital bed at night with tears rolling down my face and talking to God. I told him that if this was my time to die, I wasn’t too impressed given the fact that I have a little girl to raise. That little bundle of joy that I had waited and longed for, may not be mine to raise. “If this is your will, you suck!” Yup, I said it: in the dark, alone, scared and struggling to breath.
All of this transpired over a short three weeks. I remember thinking: ” damn it! I made it through an entire pregnancy with no stretch marks!” Now, in three weeks, I had gained enough fluid to necessitate the wearing of maternity clothes again. I guess that was a bit of a blessing, because when I went out, people just automatically thought I was pregnant and would smile at me…little did they know I was in a battle. When I went home, I was determined to look after myself and my new baby girl! Even though it would take me at least half an hour to shower and get dressed, I was determined to do it. I had to sit in the shower, and washing my hair was a real effort and I easily tired and was short of breath. I had to lay on the bathroom floor for a while after the shower to recoup before dressing. Quite the change for something we take for granted and it being such a basic need. But it did give me insight into how my patients feel when they are totally vulnerable while I assist them to get showed/bathed and dressed.
Ah but for the love of family and friends! When my feet were so swollen that I couldn’t wear any of my shoes, a friend and fellow RN brought me these wonderful knit slippers which a remember with fondness, appreciation and love. My mom travelled to my home to help care for my daughter, as she was one year and I was still too weak to pick her up.
You just can’t get through something like this without the support and love of friends and family. It is with their caring and love that I am able to have a somewhat “normal” life and have the privilege of living life to the best of my abilities. I have been fortunate to stay in shape, eat the right foods (for the most part…), manage my job, family, social life, and even travel to many wonderful places on this planet. But, trying to live life to the fullest takes its toll. Above all, we have to remember that this chronic disease we are battling, is also a battle that our friends and family share with us. They are affected as well. As the saying and song goes: No man is an island.
“No matter how good or bad you think your life is, wake up and be thankful for life: Someone somewhere is fighting to survive.”