The hardest thing in the world is to learn to accept that you can’t change or control what happens to you. Today, I’ve gained some good news–and although it’s not something I’m totally comfortable sharing with everyone today, I hope to eventually be able to share all that I’ve learned through the process of being sick. I’ve learned that I have to be my best advocate for myself. If I don’t think something is ok, I say so-especially when it comes to my medical care. If I think I should have an IV in my arm versus my hand-I will say so. Where as, in the beginning, I was more timid and unable to voice my thoughts for fear I wasn’t right. When it comes to your body and your life-whatever you think is best for you -is. It took me many surgeries and years to come to this conclusion.
The Stress of living with this illness can be almost unbearable at times-I’ve said this before…I have to concentrate to concentrate. It’s hard, this disease is one of the worst situations I’ve ever had to deal with. There are days when I feel like I can do this, and then there are days when I know I can’t do it.
Lately, I’m struggling to keep weight on. (I know, I know…poor me.) But it’s not fun to have your clothes hang off of you–espeically when you like the clothes you own. I’ve never known the struggle of being “thin” until I got sick. Then I learned quickly, the grass isn’t always greener on the other side. Even the smallest ostomy belt doesn’t fit because it’s pulled as tight as it will go-but it’s still not tight enough. The struggle is real, and my real point is–the struggle is real for everyone. Everyone has something, or many things they don’t like about themselves. I’ve become extremely insecure with my body since gaining a bag. I know most ostomates are proud and wear their bag as a symbolic badge for courage–and I commend every one of you who see it as a strength. I unfortunately, see it as my weakness. I’m not comfortable with it and it constantly feels foreign to me. I’m not writing this as a “poor me” blog-but I’m writing this for everyone else who also hates their bag today. It’s ok to hate it, and it’s ok to love it–and it’s even ok to have a love/hate relationship with it. The bag saved us, but it also replaces a piece of us that could no longer manage to survivie in our bodies. In a way, every day I mourn the loss of my colon and the representation of what it meant for me to have it. Normalcy. Having a colon is “normal”-so it would only make sense that having that creates a sense of normalcy. On the flip side, I feel this is also why so many of us are desperate to pop any drug into our mouths that may even offer a slight chance of hope for normalcy. The hardest thing is rembering and reminding oursleves everyday that we are a version of normal–our normal-but it’s taken me years to convince myself of this and I’m still working on it.
Along the way, through anal manometry testing, dilations, pokes and probes I’ve learned that no matter what curve ball life throws-I can do it. I’ve had procedures that would make you squeemish at the thought, and I’ve been so close to death’s door that almost anything else seems trivial. Yet somhow, I push through. Sometimes it’s hour by hour and sometimes it’s day by day-but I keep pushing through. I’m setting goals and achieving them, and I’m remembering the important things about life once again. Taking it one bag at a time, we get by with a little help from our ostomies.