Month: April 2018

“Byrd’s” of a feather fly together: Advice from a fellow IBD advocate

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Feelings of isolation, fear and embarrassment. Chances are, if you battle inflammatory bowel disease you’ve experienced all of these feelings upon your diagnosis. That was the case for Byrd Vihlen, a 31-year-old from Georgia, who was diagnosed with ulcerative colitis at the age of 26. IMG_8145Fast forward three years and her diagnosis changed to Crohn’s Colitis.

Byrd recently won the first-ever Lights, Camera, Crohn’s Instagram giveaway. The connections we make along our patient journey empower us to be stronger and face our illness head on. Check out this interview that sheds light onto Byrd’s brave battle against IBD.

NH: What symptoms did you have that led you to know something was wrong?

BV: “For about a year, I was having digestive problems (seeing occasional blood in my stool, chronic constipation, and bloating). I thought it might have been a milk/diet sensitivity, so I scheduled an appointment with a GI, and he immediately advised me to get a colonoscopy. I was really scared and didn’t have enough information, so I cancelled a few days before the scheduled procedure. It wasn’t until almost a year later (after a few weeks of antibiotics for sinus problems) that I realized something was horribly wrong. I started to bleed a lot, was in severe pain unlike anything I had experienced before, and had extreme urgency.”

NH: How has your disease changed your perspective on life?                                       

BV: “Before I got diagnosed, I would easily get caught up in the plans for what I thought my future would and should look like. Being chronically ill makes you slow down, loosen the control of your life that you thought you had in the first place, and focus more on what’s going on today–because most of the time, you’re fighting just to get through the day. It makes you aware of the little things that you may have been too busy to see before, like people trying to hide their suffering and struggles. byrdI’m thankful IBD has opened my eyes and given me the gift of true empathy. That empathy has led me to crave a deeper understanding and genuine connection with friends and loved ones. It has also shown me the true strength in others, and I am constantly humbled by the selflessness of my sweet husband and forever soulmate.”

NH: What advice do you have for those who are newly diagnosed with IBD?

BV: “Finding the right team of doctors, get referrals and read online reviews. When you do find a doctor you trust, you still need to be your own biggest advocate and use your voice. Don’t be scared of asking questions and calling them too much–only you know when something isn’t right with your body. Connect with more seasoned patients and ask for advice, there’s a lot of overwhelming information on the internet, so it’s nice to receive firsthand experience from people you know. IMG_5428Your new “normal” is going to look a little or a lot different; it will take some time to adjust to that. Try not to compare your new energy level to your old, your body is fighting a hard battle and you’re doing the best you can. If your energy/activity level is more limited, plan accordingly. Choose wisely who you want to spend your time with and what you want to do – soak in and cherish these times.”

NH: What inspired you to share your patient journey with IBD on social media?

BV: “After diagnosis I was feeling isolated, scared, and embarrassed–like I was alone in the pain. I wanted to tell others about this huge life-changing battle I was beginning to fight, but realized that most people are uncomfortable talking about chronic illness in person. I had a desire to be seen, understood, and wanted to connect with others going through a similar journey. I then discovered the incredible Instagram community waiting for me and loved that as an artist I could creatively tell my story in a visual way.”

NH: How does support from others in the IBD community on social media help you push through the difficult days?

BV: “Connecting to others who are fighting gives me strength in knowing that I’m not alone. People sharing their vulnerability is beautiful and it warms my heart. IMG_5326Whenever I am having a really difficult day and see a fellow warrior saying they can relate, offering words of kindness, or that they are having a hard day as well, you can feel that genuine connection and know that they truly mean it.”

You can connect with Byrd on Instagram and follow her patient journey by following her here: @byrdvihlen. Stay tuned to my Instagram page (@natalieannhayden) for future Light’s, Camera, Crohn’s giveaways!

 

 

Taking care of yourself and your sick child, while battling IBD

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It’s never easy to see your baby under the weather. It’s a hopeless feeling when the only way they can communicate is by crying or acting differently. It’s difficult to manage your own chronic illness and keep yourself from spiraling out of control, as you worry about the well-being of your little one. IMG_9473It’s been a rough few days in the Hayden household—our almost 13-month-old son has been battling days of hives and an allergic reaction that we can’t seem to pinpoint.

The perplexing nature of his health and the unknown of what the next hour will bring, is reminiscent of life with Crohn’s disease. Trying to manage symptoms to bring comfort, the mystery of what’s sparked the problem and the emotional rollercoaster that goes along with it.

As an IBD mom, my focus is solely on getting my son to feel better. But, it’s difficult to take this on as you battle your own disease that preys on stress and worry. A disease that tends to surface when you’re going through difficult times. A disease that tries to distract you from the task at hand. It’s been exhausting to carry my son back and forth with me to bathroom as he crawls around and pulls on the toilet paper. IMG_9522As I feel burning sensations in my abdomen at the end of the day, the internal conversation of what could be happening within my own body consumes my thoughts. I can’t help but worry that I can’t go down. I can’t allow my disease to flare when my family needs me most.

I’m going to pause now and say something to all the moms and dads who have children with a complex medical condition. A condition that requires daily care, attention and worry. I simply can not imagine all you endure. Reid has hives. We’ll get to the bottom of it. We’ve talked to the pediatrician, gone to urgent care and have plans to see an allergist. But this reality is NOTHING compared to what so many families face every day. IMG_9472So, the last thing I want to do is sound like I think I have it so bad—because trust me, I keep everything in perspective and know I’ve been blessed with a healthy baby. My goal is to provide insight into motherhood with IBD and the challenges it can present at times.

As we endure life’s unexpected ups and downs—it’s imperative we listen to our bodies, get as much rest as possible and stay on top of disease management. As most mothers do, we tend to put our needs to the wayside. But, in doing so, you set yourself up as an easier target for your disease. It’s a difficult balance, but managing your own illness still needs to be a priority. When you have a spouse and children, your IBD is not just about you, but your entire family. Ask for help when you need it. Take your daily medication and stay away from trigger foods that can ignite additional symptoms. Run an errand by yourself. Take a long shower. Give yourself time to process the stress you are going through and remember to breathe.

As an IBD mom, by taking care of myself, I know it’s part of how I take care of my son. He is completely dependent on my husband and me. If you lose sight of the importance of caring for yourself and doing all your can to control your disease, it will come back to bite you in the ass. Literally and figuratively.

I’m only 13 months into motherhood. IMG_9419Each day is a learning experience. Much like my initial diagnosis of Crohn’s disease nearly 13 years ago, I know I’ll continue to grow and find comfort in my new role. Navigating unknown waters and experiencing illness within your child is all part of it. No matter how many years go by, as parents, we’ll never be experts, but we’ll continue to evolve and discover what works for us personally and as a family.

Find the balance. Use your voice. Your journey as a patient has prepared you for motherhood in ways you never thought possible. Trust your mom gut. As women with IBD, there will be difficult days when the brain fog, fatigue and pain overwhelms you and you have to push through to care for your child. But, there will be many more days where you feel strong and happy—and your child will look up at you with love in their eyes and a smile on their face and remind you that you’re the best thing in their life. Hold on to the feel good days, the magical moments—and know that while the tough times in parenting and as a patient are draining, they are fleeting.

 

 

 

First EVER Lights, Camera, Crohn’s Instagram giveaway

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Hey guys! Big news to share. I just launched the first Lights, Camera, Crohn’s giveaway on Instagram. As someone who’s battled Crohn’s disease for nearly 13 years, I’m well-aware of how far a simple act of kindness can go, whether it’s from a friend or a stranger. That’s why—I’ve teamed up with other positive forces for this special giveaway. Here are the prizes:

–instagramgive2A cozy, lightweight hoodie from @thegreatbm that reads “IBD Can’t Stop Me” on the front and “Ask me about my resilience and determination—where I find my strength—what motivates me to keep going and reminds me I can handle this pain—why I refuse to quit and what I’m doing to overcome my IBD” on the back. I own this hoodie, it’s comfy and so empowering.

-Pretty earrings that go with any outfit from @rockswithsass. instagramgive3The store owner battles Crohn’s disease herself and donates a portion of all proceeds to the Crohn’s and Colitis Foundation!

-Stoke quotes from a childhood friend who’s dedicated her life to motivating others through messages of positivity. @marliwilliams instagramgive4has donated 100 uniquely designed quotes geared towards helping you find and live your purpose everyday.

 

 

 

Here’s how you enter the contest on Instagram:

  1. Like the post on my Instagram (natalieannhayden).
  2. Make sure you’re following me @natalieannhayden, as well as the following pages:

@thegreatbm

@rockswithsass

@marliwilliams

  1. Tag your besties or some fellow IBD’ers in separate comments. Each person you tag counts as an additional entry. Good luck!

instagramgiveThe giveaway ends Saturday, April 21st at 11:59 PM MST. Winner will be announced on Instagram Sunday, April 22.

This is my way of saying “thank you” for all your love and support through the years. Simple acts of kindness (especially on days when we aren’t feeling our best)…can make all the difference. If you’re interested in donating to a future Instagram giveaway, shoot me an email: natalieannhayden@gmail.com. I’d love to collaborate with you to make someone’s day!

Airport reflections: When you spot IBD support from a mile away

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I’m sitting at O’hare International Airport in Chicago. Fresh off taking the stage in Des Moines for a patient symposium. And an image of a young couple in the crowd keeps popping into my head. As I spoke, I noticed. I noticed how he squeezed her hand when I talked about love and inflammatory bowel disease. I recognized how he touched her shoulders when I reminisced about how it feels when friends turn their back on you, as you grapple with a chronic illness. As I stood on that stage, witnessing their not-so-subtle interactions, I knew that girl had found someone special.

Each time I speak, and in many of my articles, I refer to my husband, Bobby. natbobbySince the moment we met in 2013, and through all the ups and downs my Crohn’s disease has caused in our lives, he’s been my safe place and my protector. During my speech, I talked about how everybody needs “a Bobby.” A person who sees you for more than your disease. A person who doesn’t shudder at the thought of seeing you at your lowest for days on end in a hospital bed. A person who gets the day to day management and emotional toll chronic illness takes on not only the patient, but the couple and the family.

After my speech, this same couple who stood out to me in the crowd approached me. I immediately told them they had grabbed my attention. I said let me guess—I pointed to the young girl and said, “you have IBD.” IMG_9348Then I turned to her boyfriend and said, “and you are her rock and her caretaker.” They laughed and told me I guessed right. Isn’t it amazing how easy it is to spot this type of support? I was a complete stranger, once in her shoes. Young. Dating. Wondering about my future. Their names are Emily and Kellen.

Ironically, Emily and I both underwent bowel resection surgery days apart in the summer of 2015. Her boyfriend at the time, decided it was too much—and left her. Then she met Kellen. As we joked, “her Bobby.” IBD throws us curve balls, it challenges us in unimaginable ways, but it teaches us, too. One may think of surgery and setbacks as the lowest of the low during the patient journey, but often those moments bring about the greatest highs and crystal-clear clarity. Both about ourselves—what we’re capable of…and about others.

As I was talking to Emily and Kellen it brought tears to my eyes, because I felt so happy for her. IMG_9347Only 22 years old, so much of her life ahead of her. And she’s found the person who looks at her, despite her illness, and loves her for it. The Bobbys and the Kellens of the world are the real deal. If you haven’t found yours yet, trust me…they exist and they are out there.

It was my husband Bobby’s birthday yesterday. The special milestone days always bring out the mushy side in me. I can’t help it. So, as I sit in this airport, and think about how lucky Emily is, I’m also reflecting on how lucky I am to have found my ride or die, who will be with me all the days of my life, just like my illness.

 

The art of storytelling as a patient advocate

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The art of storytelling. How do you narrate your patient journey? How do you build a relationship with others online for the long haul? Are you mindful of how your words benefit your community—and the value they possess?

I recently had the opportunity to attend Health Union’s HU Connexion ’18. IMG_9053It was an awesome event that brought together writers and patient advocates from a variety of chronic illness communities. I was there as one of the inflammatory bowel disease representatives.

There’s something special about getting to meet your online support network in person. One of the speakers at the conference, Laura Hope-Gill, discussed the power of narrative healthcare. Her words and her message were invigorating and empowering. She reminded us that there is no instruction manual or cookie cutter approach to patient advocacy. She discussed how each of our personal stories help to bring our advocacy efforts to life.

Laura said, “We are characters in a wonderful, heartbreaking story. Once you get the diagnosis—Ursula, our inner sea witch, waits to steal our inner voices. IMG_9070Instead of staying silent, remember that humans connect best at points of vulnerability. Illness gives our lives more meaning, we’ve discovered who really loves us and who our genuine relationships are.”

As a patient advocate and a voice for the IBD community, I’ve witnessed firsthand how my efforts and those of my counterparts require bravery. It’s intimidating and scary at times to put something out on the internet and await feedback. Some positive, some negative. It can be disheartening when your words seem to be falling on deaf ears. At the same time, when someone reaches out and lets you know how you’ve helped them or brought them comfort, it’s worth it. It’s that moment—when you feel heard, that you know you matter.

There is room for everyone at the advocacy table. It’s not a competition, it’s not a popularity contest on social media. Sure, “likes”, “shares” and followers may make us feel good—but, they are not a measure of the difference we are making. It’s not a competition of misery.

One of the most helpful recommendations I took away from Laura’s speech was the importance of not abandoning the storyteller. IMG_8619This was really eye-opening to me. You may wonder what I’m referring to. As a patient advocate and within any conversation you have—how quickly are you to relate to someone’s story and respond with your own similar experience? I think we’re all guilty of this. We aren’t malicious in our actions and maybe we’re trying to self-disclose to show we empathize. But, instead of responding with our own personal story—it’s imperative we listen, rather than tell. Let the storyteller guide the conversation.

By bringing a story of trauma to the surface, we are healing. Writing builds self-worth, beyond being sick. Diagnosis of any form, was the end of our normal. We grieved it. And guess what, we’re still here. Understand there is no limitation to our stories. Rather than being broken, you have the ability to be a storyteller and create a self beyond being sick. A special thank you to Laura Hope-Gill for reminding me of this and for opening up my eyes to the importance of being a storyteller in the advocacy space.

Reflecting on motherhood & Crohn’s: Year One

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One year ago—my life changed in the best possible way. I became a mom. But, not any mom. A mom with chronic illness. Parenthood is daunting, no matter what, especially your first time around. IMG_6309Throw in an unpredictable, often debilitating condition and tackling the role is even more challenging.

In talking with fellow women who battle inflammatory bowel disease, there always seems to be a hesitation, a concern and self-doubt about the prospect of carrying a baby. I totally get that mentality. It’s almost inconceivable to imagine your body—the same body that brings you so much anguish—creating a miracle.

Becoming a mom one year ago restored my self love. Becoming a mom has enabled me to see all that I’m capable of, even when I’m weighed down by fatigue. IMG_8727Becoming a mom has made every poke and prod, injection and procedure less of a pain, because now I have so much more to fight for.

When I stare at that focal point on the wall as a needle breaks my skin or when getting out of bed for the day is a struggle, I immediately think of my darling Reid. The boy who changed my life, who shook my world and who shows me every single day that my illness didn’t rob me of experiencing the most perfect gift.

Mom guilt is real. If you’re a mom with a chronic illness, instead of focusing on your limitations—or when the next flare-up could happen—soak in the moments of joy you feel and the happiness your innocent sweet child displays on a daily basis. Know that focusing on your needs and practicing self-care is paramount because by feeding your soul and lowering your stress, you are protecting your health for the sake of being there for your family.

As patients, we evolve. IMG_8815 (1)As people we grow. Each chapter of our lives matters and is part of our story. Embrace the good and even the bad—because it brought you to where you are today. Pain and flares are fleeting and as we all know, so is youth. Our babies grow up so fast, we must hold the feel good moments close and not dwell on past hurt or what could happen tomorrow.

Someday, when my sweet boy is older, he will understand that mommy isn’t like the rest. But, my reids first bdayhope is he’ll realize what an integral role and life-changing impact he’s had on me since the moment I held him in my arms for the first time.

As we sang “Happy Birthday” and my son played with his smash cake, I thanked God for keeping me out of the ER and hospital for Reid’s entire first year of life. I thanked God for showing me that my patient journey is about a lot more than me, it’s about my whole family. And there’s no one I’d rather stay strong or fight for, than them.