The days are long, but the years are short with chronic illness

The days are long, but the years are short. Oftentimes this ‘saying’ is commonly shared when talking about parenting. This past weekend my first born turned two. A rush of emotions came over me as we celebrated my son Reid’s special day. I got to thinking—the same is true for life with chronic illness. Reids second bday

The days are long, but the years are short. When you hear that life-sentence uttered from a doctor, your world comes to a standstill. Everything from your past and everything in your future seems to come to an abrupt halt. You feel like you’re suffocating and there’s no way you can go on. But you do.

The days are long, but the years are short. As I come up on 14 years this summer since my diagnosis of Crohn’s disease, I can hardly recall who I was before my IBD. That person, that identity—seems somewhat foreign to me. When you think “14 years”, it sounds like a long time—but, it feels like a blink of an eye. It’s a blur of experiences—some painful, some amazing. I choose to focus on the amazing.

The days are long, but the years are short. When you’re dealing with abdominal pain, when everything just hurts, when you experience nausea and vomiting moments after you try and eat, the days feel endless. IMG_8476When you’re in the thick of a flare and when feel good days feel far from ever being a possibility, try and remember how fleeting these moments are.

The days are long, but the years are short. When you’re being rolled in for another CT scan in the emergency room, when the nurse can’t seem to get an IV started on the fifth try, when you’re dreading your injection, when the colonoscopy prep is making you gag on your knees in the middle of the night in the bathroom, when you’re up counting the hours before surgery, feeling like the world is on your shoulders—remind yourself, this too shall pass.

The days are long, but the years are short. With children as they grow up, we can visually see the physical change going on. Two years ago, my son was a newborn, IMG_6459today he’s a rumbustious, adorable, little ball of energy. Sure, we age, too—but we also mature mentally when it comes to our illness. What felt like the biggest obstacle and scare of our life, evolves into something that is a part of who we are, an identity that while not ideal, helps to define us.

The days are long, but the years are short. Every year without needing to be hospitalized, every year where you feel like you have your disease under control, every year where your health doesn’t take you away from the life you are yearning for, hold on to those years.

The days are long, but the years are short. Rather than wish time away, I try and remind myself how each and every comeback is stronger than the setback. That every time I’ve been knocked to my knees by my disease in the past, I’ve come out of the storm stronger and with greater perspective about this life I’ve been given.

The days are long, but the years are short. You don’t always have to love your life. You can certainly mourn the loss of who you were prior to diagnosis, lord knows I did. remedy-nsmith-stlouis-1283But I can promise you, that as life goes on and as the years since that moment of diagnosis get further and further in the rear view mirror, you will find a comfort in this identity.

The days are long, but the years are short. You will garner a confidence in your strength that wasn’t there years before. And someday, you too will pause and think about where you’ve been and how far you’ve come to reach this moment. I hope you give yourself a proverbial pat on the back to honor your resilience and determination to live your life despite all the what if’s, despite all the pain, despite all the worry. Because you my friend, are a warrior—day in and day out—and you are so much more than your disease.

Discovering Gratitude While Living with IBD

When you think about life with inflammatory bowel disease, are you able to think beyond the pain and suffering? Are you able to pause and take time to reflect on how your illness has shaped you into who you are today? Are you willing to look at something that continually challenges you, scares you and leaves you drained—and think…you know what, I wouldn’t have my life any other way? _F6B0037

It takes a lot of time and a lot of patience to come to this place of realization. Until recent years, I’m not sure I would have ever been able to say a positive word about what it’s like to live with Crohn’s disease. But now, more than 13 years later with this disease, I feel my vision has gone from black and white and changed to color. I have peripheral vision I never had before. I’m able to see how my past shaped me into who I am today. I’m able to recognize how the pain and hurt has altered my perspective and forced me to take the blinders off. I can see moments where I’ve risen above and shown courage and bravery. Some memories are painful, some make me feel sad, others make me feel proud.

There comes a time in a chronic illness patient journey that you stop thinking “why me” and instead “why not me.” I don’t like placing pity on myself. I don’t prefer to fantasize about the days before I was diagnosed. Instead—I enjoy reflecting on how I’ve evolved through the years, despite the setbacks and the scares. wedding1Chronic illness, while physically, mentally and emotionally taxing, also has the ability to show us the beauty of the world around us and all that we’re capable of. Instead of thinking how my Crohn’s holds me back—I think about how I’ve lived despite its restraints.

As the years go by, and the diagnosis “anniversary celebrations” roll on, I continue to grow and feel a renewed sense of self within my illness and within myself. As you experience procedures, self-injections, surgeries and the unknown, you get desensitized, but you also gain strength. The day-to-day management of an invisible chronic illness is exhausting and can be overwhelming, but there comes a time when you feel a sense of harmony with your body. You know what it’s trying to tell you. You know when you need to listen. You understand when you need to act.

_F6B0340My disease has helped me take on motherhood. It’s made me soak in the feel-good moments, take mental snapshots of the happy days and celebrate the beauty of life. My disease has forced me to press pause when I’m doing too much, it’s reminded me of the importance of self-care and taking time for me. It’s shown me which people are meant to be in my life and which are meant to be in the backstory.

It’s a season of gratitude. A season of thanks. A season of family, friends and celebrations. This year—I’m choosing to celebrate how Crohn’s disease has guided me to the present. Beyond thankful for a husband who’s my rock, a son who is healthy as can be and a daughter on the way in January. My body may not be “healthy” …but, it’s still managed to create miracles.

It hasn’t always been a fun ride, it’s been brutal at times. But it’s my life and I wouldn’t have it any other way. Please do yourself a favor and give yourself time to reflect on how your disease has shaped you into the person you are today. By showing gratitude about living with IBD, it’s one of many moments where you can show your disease who is in the driver seat and continually rise above.