Defy The Odds, Fight The Fight: CCFA Awareness Week
My original draft about my autoimmune disease, ulcerative colitis, was a very long, overly wordy novel. I didn’t intend to make it a novel, but that’s what it became. Reliving every detail of my last flare (the worst so far), I documented everything that happened. It was informative, but it missed the point.
December 1-7 is Crohn’s & Colitis Awareness Week. When I first sat down to write about my own personal battle, my intention was to provide encouragement, strength and hope to everyone suffering with these diseases. I wanted to tell everyone, ‘keep dreaming, keep hoping’! But instead, it became entirely about me.
So here’s just a little bit about me. Yes, I live with ulcerative colitis. I was diagnosed in Spring, 2013. I’ve had two colonoscopies, two sigmoidoscopies, and countless labs done. I’m currently on four medications, but hoping to taper to two (assuming my new treatments go well). I get a remicade infusion every 8 weeks, but I’m more than happy to put aside two hours of a day for it. Because it’s probably saved my life. It’s undoubtedly saved many lives.
It may not have literally saved my life in a sense that I’d die without it, but I’d certainly (still) be in a terrible way without it. At the very least, it’s given me my life back. After suffering for weeks in a flare, losing 7 pounds and a ridiculous amount of blood, I was delirious on prednisone (steroids, which failed to stop the flare), shaky and weak and dizzy. I was desperate to get back to things as simple as going to work and eating normally, and my new treatment has me back on track. I’m running again, starting to sing again, and inspired, probably more than ever.
December 1-7 is Crohn’s & Colitis Awareness Week. When I first sat down to write about my own personal battle, my intention was to provide encouragement, strength and hope to everyone suffering with these diseases. I wanted to tell everyone, ‘keep dreaming, keep hoping’! But instead, it became entirely about me.
So here’s just a little bit about me. Yes, I live with ulcerative colitis. I was diagnosed in Spring, 2013. I’ve had two colonoscopies, two sigmoidoscopies, and countless labs done. I’m currently on four medications, but hoping to taper to two (assuming my new treatments go well). I get a remicade infusion every 8 weeks, but I’m more than happy to put aside two hours of a day for it. Because it’s probably saved my life. It’s undoubtedly saved many lives.
It may not have literally saved my life in a sense that I’d die without it, but I’d certainly (still) be in a terrible way without it. At the very least, it’s given me my life back. After suffering for weeks in a flare, losing 7 pounds and a ridiculous amount of blood, I was delirious on prednisone (steroids, which failed to stop the flare), shaky and weak and dizzy. I was desperate to get back to things as simple as going to work and eating normally, and my new treatment has me back on track. I’m running again, starting to sing again, and inspired, probably more than ever.
 |
| My first remicade infusion; so tired, but so happy. |
But others aren’t so lucky. Since my flare began last August, I’ve become extremely involved in the Crohn’s & Colitis community, following CCFA and educating myself. I’ve been amazed to discover how many people I personally know who also suffer from these diseases. I see countless patients sharing their stories online; stories that are way more serious, touching, heartbreaking and inspiring than mine will probably ever be. I see photos of people who are constantly in the hospital. And I also see patients who, despite their disease (or maybe because of it), run incredible distances or pursue their dreams with amazing gusto and enthusiasm. They don’t live with their disease; their disease lives with them. They call the shots. They don’t let it run their life. And I love that.
Great strides have been made in the advancement of treatment. Awareness is growing. The Restroom Access Act (Ally's Law) has spread throughout most of the country since it began a decade ago. But it’s not enough. For whatever reason, I feel incredibly compelled to spread the word about these diseases. I’m not ashamed or embarrassed to say, yep, this is part of my life. And so many others live with it too. So many people are living in a constant flare, without access to proper treatment, without support from loved ones, without hope. And that breaks my heart.
When I was battling the worst of it, housebound and suffering through that flare, I can’t tell you what it meant to talk to and be around other people. The presence of people was amazing. It was a feeling of gratitude I’d never experienced. I never truly appreciated other human beings so much. I cried when I got flowers from my team at work, and the ‘get well, we miss you’ card from the HR department. And I was floored when a friend drove all the way across town just to bring me ‘safe’ foods. I desperately hope to continue to appreciate people so much, all the time. Life quickly gets mundane and normal, but people never, ever lose their importance.
The support and curiosity from everyone I’ve talked to can only mean one thing; people want to learn, and they want to help. They want to understand. They want to know! If you’ve recently been diagnosed, I assure you, the people who really care will not run away. They won’t be disgusted and they won’t be indifferent. They’ll be invested, they’ll be attentive, and they’ll be there when you least expect it. Don't be afraid to share your story. Family and friends routinely inquire about my health, making sure I'm okay. They're incredible people.
Great strides have been made in the advancement of treatment. Awareness is growing. The Restroom Access Act (Ally's Law) has spread throughout most of the country since it began a decade ago. But it’s not enough. For whatever reason, I feel incredibly compelled to spread the word about these diseases. I’m not ashamed or embarrassed to say, yep, this is part of my life. And so many others live with it too. So many people are living in a constant flare, without access to proper treatment, without support from loved ones, without hope. And that breaks my heart.
When I was battling the worst of it, housebound and suffering through that flare, I can’t tell you what it meant to talk to and be around other people. The presence of people was amazing. It was a feeling of gratitude I’d never experienced. I never truly appreciated other human beings so much. I cried when I got flowers from my team at work, and the ‘get well, we miss you’ card from the HR department. And I was floored when a friend drove all the way across town just to bring me ‘safe’ foods. I desperately hope to continue to appreciate people so much, all the time. Life quickly gets mundane and normal, but people never, ever lose their importance.
The support and curiosity from everyone I’ve talked to can only mean one thing; people want to learn, and they want to help. They want to understand. They want to know! If you’ve recently been diagnosed, I assure you, the people who really care will not run away. They won’t be disgusted and they won’t be indifferent. They’ll be invested, they’ll be attentive, and they’ll be there when you least expect it. Don't be afraid to share your story. Family and friends routinely inquire about my health, making sure I'm okay. They're incredible people.
 |
| Sweet messages from my coworkers (amazing people). |
If you don’t have one of these diseases, I’ll bet you know someone who does and you probably don’t even realize it! So if the opportunity comes, talk about it. Open that door. You might be surprised just how helpful you can be when you lend an ear. Or take someone home after an infusion (they can be tiring)! There’s so much you can do.
After everything I’ve been through, I’ve seen so much goodness. It’s hard for me to completely hate my disease, because it’s made me so aware, and so appreciative. There is still plenty of awesomeness in the world, and in the people. Don’t ever lose hope. Defy the odds, fight the fight. There is goodness coming, there is renewal. There’s always a fresh start. I really, truly, believe it.
After everything I’ve been through, I’ve seen so much goodness. It’s hard for me to completely hate my disease, because it’s made me so aware, and so appreciative. There is still plenty of awesomeness in the world, and in the people. Don’t ever lose hope. Defy the odds, fight the fight. There is goodness coming, there is renewal. There’s always a fresh start. I really, truly, believe it.
Comments
Post a Comment