My cousin was 11 when I was born. She was 43 this week when she passed away. In our big Italian family, she and her brother were the youngest of the grandchildren; my brother and I were the oldest of the great-grandchildren. I loved everything about going to their house - but most of all I loved playing with Lisa. I'm not sure how she felt about playing with her "baby" cousin, but she'd always play barbies with me. She had the coolest clothes and the coolest bike. I ended up inheriting some of her clothes - one hoodie in particular that was my favorite for years. And those who knew me in middle school probably remember my awesome bike that I rode to school, that was from her as well.
I didn't know that genetics would also decide I would inherit her disease. She technically had Crohn's Disease and I have Ulcerative Colitis (for now...we're still not 100% sure and I have issues in my small intestine, but for now, my disease is technically in my colon). For all intents and purposes, they're the same disease. Whenever I would hear how sick she was, I could feel the pit in my stomach grow...what if that happened to me? I'm terrified. Why couldn't genetics have given me her curly red hair?
It's been a very hard year, full of hard decisions about my health. It's hard to explain to people what I went through, I think there was a part of me that didn't want to admit how sick I was, even to myself. But I think somewhere in the back of my mind, I always told myself "if Lisa can survive what she is going through, I shouldn't even complain about my condition". Every time I'd get down on myself, I'd thank my lucky stars that at least I got to eat real food and didn't have to hook myself up to a bag for nourishment. Even when I was taking eight different medicines and enduring things that you can't discuss at the dinner table, I never felt I had it that bad, because I knew that it could be worse. Way worse.
I wish I had kept in better contact with her. She grew up, went to college, moved to Vegas and didn't come home very often. I got busy with my own life. We should have bonded more over our disease. I shouldn't have left it to word of mouth through my aunt telling my mom telling me. I should have picked up the phone and bluntly said, "hey Lisa, let's talk about our bowels". I kick myself for not doing more. But my family doesn't discuss that kind of stuff, at least not in the kind of detail we should. I kick myself for not educating myself on what ultimately could be lurking inside me as well. The night I learned she died, I fell down the rabbit hole of internet research, learning every possible thing that can go wrong for IBD patients....trust me, you do not want to fall down that hole! But I educated myself on the increased risks that result from IBD (and are amplified by many of the medicines we are forced to take). I have learned a great deal in just a few days, on what the risks are and what I can do to help lower my risks.
I have decided that I'm it's time to get 100% better. I know that I am not as healthy as I should be - part of that has been side effects from my medicines, some has been from physically being ill, but honestly, some of it is from simply being lazy. My GI doctor has me starting with a nutritionist. His exact words were "now that I'm not pumping you full of poisons, let's get everything else in order". Back in June, I really didn't know if I would ever get any better, and my doctor took my hand and told me we'd get through this. I'm so thankful. He listened to me and let me remain off of the "scary" drugs until we had tried every other treatment. He knows what is going on in my life so that we can know how everything, including stress and diet is affecting my condition (even though the answer so far is "no effect"). For 12 years, my doctor has been the best advocate and ally that I could ask for. And without him, I don't even know where I'd be. So I knew that when he said it was time for the scary medicines, it was really time. (And Humira seems to be working for the most part). I need to fight harder though. I need to do everything I can to fight this stupid, stupid disease and fight for a cure. In Lisa's memory.
So, in the spirit of IBD Awareness Week: I will say this: I hate IBD. Some day, you'll read all about it in my memoirs. But until then, if you're at risk for stomach issues or colorectal cancers, please get screened. I'm excited for all the new advances that are happening in IBD research. One of the winners of the 43North competition here in Buffalo actually is involved in UC research. I can't wait to see what they bring to the table. I believe that someday, we'll have a cure.
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