Leah on Living Everyday
Updated: Feb 28
"I have a condition called IGA Nephropathy which is also known as Berger’s disease. It is a kidney disease that occurs when the antibody immunoglobin A (IgA) builds up in your kidneys. This results in the inflammation of the kidneys which over time lowers the ability for my the kidneys to filter my blood. I was unaware of my condition until I went to a clinic for a back problem. My doctor suspected I might have IGA back in 2010, but I was ignorant to believe that I had such a condition. I finally came to my senses and had a biopsy done in 2015 which confirmed I have IgA."
"I did not have any symptoms at all in the beginning. Now I can say, I often get skin rashes, itchiness and my toes turn light purple. I’ve seen a dermatologist who informed me that this is a direct result from IgA. I tend to get tired easily and it seems like my joint pain is more frequent. As of my last check up 2 months ago, my kidneys were stable at 36 percent functionality. I feel okay, but knowing that anytime I could be needing a kidney is very hard. I want to live as normal as I can, but I have this fear in me that I might not be able to keep this 36 percent forever."
"Autoimmune is not just about my body attacking itself, there is more to it than that. The doctor will tell you that we can’t do anything about it. But we need to be open to other medical and healing practices to see what works best. Our body is wonderful, and we don’t need to feel sorry for ourselves because of an autoimmune disorder. We need to focus on understanding the disease and taking appropriate measures to improve our health. To cope, I pray and surrender to God knowing he is the only one that knows best. He is the healer. He knows and created my body. He is what keeps me going."
He is the healer. He knows and created my body. He is what keeps me going.
"My kidney function became concerningly low in 2018. My Nephrologist decided to put me on a very high dosage of steroids called Prednisone. The side effects I experienced was worse than the sickness itself. It was a nightmare. I don’t know if I can take that treatment again. The bloating, moon face, and mood swings did not sit well with me."
"My friends and family are very supportive though I don’t really know if they understand the severity of my sickness. I don’t appear to be sick so they tend to tell me that I look nice and I’m okay. They do not really fully understand the impact this disease has on me, but I am thankful that they are there for me when I need someone to talk to. I follow some Naturopathic Doctors and the Medical Medium. I take bits and pieces of their advice and implement it to myself. I joined a Facebook group with IgA patients which allows its members to vent, whine and cry. Everyone is very supportive and understanding."
They do not really fully understand the impact this disease has on me, but I am thankful that they are there for me when I need someone to talk to.
"Food, in my opinion, has a huge impact on my health. Although my Nephrologist told me it's not about the food I eat but more so my body attacking my kidney, I know that food has played a big part in the stability of my kidneys over the years. I know when my body needs good food. I can tell when I am not eating good as my body has its own ways of telling me. I juice celery and drink smoothies almost everyday and I avoid meat protein as best as I can. I am not that consistent with my diet, but I make sure I give my body some fruits and vegetables and I keep track of my sodium intake. I still eat rice, fish, chicken, and veggies. I always have wild blueberry in my smoothies among other fruits."
"I’m happy with Canada’s health care system. I think they are doing their best. I have regular check ups with my Nephrologist and consistent blood work. I don’t know if I would be able to afford it if I was in the Philippines. I am so grateful to be a Canadian citizen. I don’t wish to change the health care system, but I sometimes feel that doctors don’t spend enough time with patients to explain everything. At times it feels you’re being rushed out the door."
I can tell when I am not eating good as my body has its own ways of telling me.
"The biggest lesson this disorder has taught me is to live everyday and be grateful for everything I have. Everyone is facing different battles in life so we just need to keep fighting and let God help us in this fight. We can’t do this alone, we need to have faith and trust in God. My greatest hope is to reverse this autoimmune someday. That my little armies in my body could attack the enemy and not my kidneys."
Deeply moved by the bestselling book (that started off as a blog), Humans of New York Stories, I am making space for little stories from real people to spur me into thinking about and doing constructive things. We all have stories to tell, and they do carry a lot of weight. May the words and insights from these Little Stories translate into some form of hope, courage, and change above all else. ~Raya