The infusion went pretty well. The nurses still don't know how to deal with my veins. I'm so tired of being treated like a pincoushin and having them digging around my arms. The nurse today didn't even seem to know how to tie a tourniquet right. I've been dealing with regular bloodwork for more than 15 years, I know how to get my veins, I know the best places to prick. Why don't the nurses trust the patient knows best when it comes to these things? The second nurse got me on the first stick (after five sticks from the first one).
I've had a strange response to my posts about this. I've been trying to post more about my diseases to raise awareness. People have asked me some of the strangest questions. I think a lot of people think this is something new that I deal with, but it's not. Here are a few things to know about my disease: This isn't something I'll ever recover from. I will not get better. This is something I'll be dealing with for life. This is something I've dealt with for more than half of my life. It's my reality. Ulcerative colitis is a chronic condition that will be with me until the day I die. There are many dark realities to this disease. I am extremely lucky, as far as patients with UC are concerned. I know how bad it can get. My cousin died from the disease that I have in my gut. I do not need, or want, your prayers, your sympathy or your pity. I post about it to raise awareness, because it's a harsh reality that millions of people are dealing with. More than 1 in every 200 people suffers from Inflammatory Bowel Disease. And it's hard to talk about, because we're taught from a young age that it's not polite to talk about poop. And there's a lot about my disease that I don't talk about, and I'll never talk about with anyone except my doctor and maybe a few of the people I'm closest to.
But honestly, the majority of the time I AM FINE. Please do not worry about me. I am lucky that I am able to work. I am lucky that I am able to live a relatively normal life. Sure, I have a lot of doctor's appointments, and some days I feel not so great, but for the most part, my illness is barely even something I think about. I will likely have to spend the rest of my life on medicines that suppress my immune system to stop my body from attacking itself. It's something I've learned to live with. Yes, I have an increased chance of getting sick. But I still ride the bus and spend a lot of my time around the public...and let's face it....all people are grimy and germy and gross at some points.
I have a lot of people ask me about diet too. I spent five years avoiding dairy. I've gone gluten free. I've used probiotics. I've gone meat free. None of it worked. Over time and through trial and error, I have learned what works for me from a diet perspective. I cannot stress enough that my disease is NOT caused by food. Some foods will make me feel more uncomfortable when I'm in a flare, but the disease is an autoimmune disease, meaning my body attacks healthy tissue. From a diet perspective - I mostly eat whole foods, with very little processed foods. I like to know where my food is coming from and what I'm putting in my body. Local fruits and veggies from the farmer's market and eating what is in season is important to me, from an ethical and environmental perspective. My stomach has trouble with raw vegetables, and many high fiber foods are off limits, but it all depends on how I'm feeling that day, what else I've eaten lately, and the quantity of whatever I'm eating.. I tend on the anemic side, so I try to get a lot of iron (and supplement with extra iron when I need it) from things like liver, spinach, beans and nuts. But there are days that nuts will be the worst thing for me to eat. And I'm not perfect, and there are also days where all I'll eat is boxed Annie's Mac and Cheese and Lipton Cup of Soup.
I've had people be surprised when they find out that I have all of this "wrong" with me, because I never complain and I am such a positive person. Here's the truth - you learn to deal with it. I was raised by a father who's solid daily advice is that the world is not fair and that you just have to deal with it. I was raised not to dwell on things you can't control. Being positive and happy is a daily choice that I make. My diseases do not define me. I can't stress actually how little I think about them. Life is too short to worry about what could happen or to mope around thinking "woe is me". Because the reality could be way worse than you could probably imagine, but I choose every day not to think about it. If you live each day to the fullest, you don't have to worry about it. There are no guarantees in life. All you can do is deal with the hand of cards you were dealt. You'll be happier if you stop worrying, stop complaining and just start living. And if you have a bad day, let yourself be sad or mad or whatever. Feeling feelings is good and healthier than holding things inside. And some days, just order your favorite food from your favorite place and indulge. For me, it's a banh mi from a restaurant here in Buffalo. It's the most delicious sandwich I've ever eaten and it immediately makes me feel a little better.
But honestly, the majority of the time I AM FINE. Please do not worry about me. I am lucky that I am able to work. I am lucky that I am able to live a relatively normal life. Sure, I have a lot of doctor's appointments, and some days I feel not so great, but for the most part, my illness is barely even something I think about. I will likely have to spend the rest of my life on medicines that suppress my immune system to stop my body from attacking itself. It's something I've learned to live with. Yes, I have an increased chance of getting sick. But I still ride the bus and spend a lot of my time around the public...and let's face it....all people are grimy and germy and gross at some points.
I have a lot of people ask me about diet too. I spent five years avoiding dairy. I've gone gluten free. I've used probiotics. I've gone meat free. None of it worked. Over time and through trial and error, I have learned what works for me from a diet perspective. I cannot stress enough that my disease is NOT caused by food. Some foods will make me feel more uncomfortable when I'm in a flare, but the disease is an autoimmune disease, meaning my body attacks healthy tissue. From a diet perspective - I mostly eat whole foods, with very little processed foods. I like to know where my food is coming from and what I'm putting in my body. Local fruits and veggies from the farmer's market and eating what is in season is important to me, from an ethical and environmental perspective. My stomach has trouble with raw vegetables, and many high fiber foods are off limits, but it all depends on how I'm feeling that day, what else I've eaten lately, and the quantity of whatever I'm eating.. I tend on the anemic side, so I try to get a lot of iron (and supplement with extra iron when I need it) from things like liver, spinach, beans and nuts. But there are days that nuts will be the worst thing for me to eat. And I'm not perfect, and there are also days where all I'll eat is boxed Annie's Mac and Cheese and Lipton Cup of Soup.
I've had people be surprised when they find out that I have all of this "wrong" with me, because I never complain and I am such a positive person. Here's the truth - you learn to deal with it. I was raised by a father who's solid daily advice is that the world is not fair and that you just have to deal with it. I was raised not to dwell on things you can't control. Being positive and happy is a daily choice that I make. My diseases do not define me. I can't stress actually how little I think about them. Life is too short to worry about what could happen or to mope around thinking "woe is me". Because the reality could be way worse than you could probably imagine, but I choose every day not to think about it. If you live each day to the fullest, you don't have to worry about it. There are no guarantees in life. All you can do is deal with the hand of cards you were dealt. You'll be happier if you stop worrying, stop complaining and just start living. And if you have a bad day, let yourself be sad or mad or whatever. Feeling feelings is good and healthier than holding things inside. And some days, just order your favorite food from your favorite place and indulge. For me, it's a banh mi from a restaurant here in Buffalo. It's the most delicious sandwich I've ever eaten and it immediately makes me feel a little better.
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