APPLY NOW: Lyfebulb & UnitedHealth Group launch first-ever Innovation Challenge in IBD

May 17, 2018Leave a comment

As patients, we have power. We have the ability to use our experiences to shed light on the constant uphill battles we face in all facets of life as we take on inflammatory bowel disease. We have the opportunity to serve as patient advocates and leaders in our respective health communities and be a voice for those who suffer in silence. As advocates, we can share the challenges and the triumphs. We can articulate where the roadblocks are, where we struggle and come up with lifechanging solutions—not only for ourselves, but countless others.

This is where Lyfebulb and United Health Group come in. They recently launched the first-ever Innovation Challenge for Inflammatory Bowel Disease. The Challenge will recognize and award top patient entrepreneurs developing innovative ideas for better management of IBD using healthcare information technology, medical devices, consumer products or services. Get this—the top three winners receive $25,000, $15,000 and $10,000 respectively!

I had a chance to chat with Lyfebulb’s, CEO and Founder, Karin Hehenberger, M.D., Ph.D. about the Innovation Challenge for IBD. Karin says, her main mission is, “to reduce the burden of IBD, by accelerating the pace and adoption of innovation in the disease state, while raising awareness for the conditions.”

Karin is a chronic illness patient and advocate herself. Quite simply—she gets it. She lived with Type 1 Diabetes for nearly 20 years before she decided to share her story. Complications of her diabetes led her to need a kidney and pancreas transplant. Through these challenging life experiences, she found her passion for making a difference.

“My intense personal experiences enabled me to realize key insights. I started thinking about how many daily issues I had lived with as a person with T1D and came to the realization about how my own patient journey and professional expertise, could help drive research and innovation.”

In years past, Lyfebulb has held these types of challenges for diabetes and cancer. Past winners invented everything from a clever solution to ensure injected insulin was still potent and had not gone bad due to storage issues to creating a natural and better bone replacement device for those battling cancer who have experienced bone deterioration.

Much like those diseases, IBD impacts all areas of life. Karin believes there is still much we can do in the IBD space when it comes to awareness and education. It’s her hope this Innovation Challenge for IBD will help raise the level of attention on the complexities and challenges facing those of us in the patient community.

How to apply

You are eligible if:

You work on innovative ideas and concepts for better care and management of IBD using healthcare information technology, medical devices, consumer products or services; and
You, or a family member of loved one, live with IBD; and
Your idea is something other than a pharmaceutical or diagnostic innovation.

Click here to apply. The deadline to apply is Thursday, June 7 at 11:59 P.M. ET.

Judging criteria

Lyfebulb and UnitedHealth Group will gather all submissions and will review them for eligibility.

The judging panel will look for evidence in the following categories:

Patient Entrepreneur story
Degree of innovation
Impact on patient needs
Feasibility of development and implementation

From the submissions, 10 finalists are selected to present at the Innovation Challenge in late July. All finalists are flown to the summit in Minnetonka, Minnesota and treated to two days of interactions with other finalists, the jury and with Lyfebulb and UnitedHealth Group employees during one on one meetings, group meetings, presentations and meal gatherings.

If you are chosen to attend the Innovation Challenge summit, you will pitch your idea in front of the jury and audience composed of Lyfebulb, UnitedHealth Group members and invited guests. Best of luck to all the applicants. As a Crohn’s patient of nearly 13 years—thank you for going above and beyond to make a difference in the lives of others!

Yes I have a j-pouch, yes I still have IBD

May 14, 20183 Comments

Ah, the misconceptions surrounding inflammatory bowel disease. There are a laundry list of beliefs, thoughts and mindsets that blur reality. Misconceptions, while often not malicious, can have damaging effects. As a Crohn’s patient myself, I hear all too often that people believe once someone with ulcerative colitis has their colon removed…that they are cured. This is simply not the case. This week, I hand over the reins to my friend, fellow Patient Advocate and blogger, Shawntel Bethea. As someone who battles ulcerative colitis, she offers insight into life with a j-pouch. I’ll let Shawntel take it away…

I started experiencing symptoms of IBD as a child and I was officially diagnosed with ulcerative colitis as a teen. My life was forever changed. For a while, it seemed as if my life had become a constant battle between myself and my symptoms. By age 22, I had tried (just about) every medication on the market. I tried “natural healing.” I tried crazy theories I found in a Google search. I also tried steroids, pills, injections, infusions, you name it. After failing Entyvio, my doctor recommended surgery. Well, three surgeries to be precise. The ileal pouch anal anastomosis (IPAA), also known as the “j-pouch.” Fast forward more than four years since that conversation, three years post completion of the surgeries and here I am! Cured, right!? Wrong.

There is no cure for IBD

Although there are misconceptions and misinformation that state otherwise, having a j-pouch is not a cure and shouldn’t be presented to patients as such. The j-pouch is an operative approach. The j-pouch is a treatment option and for me personally, my j-pouch has given me a second chance at life. But I am not cured. I still have IBD. I am still coping with autoimmune disorders and I will likely be on medication(s) for the rest of my life. Does that sound like a cure to you?

Still not convinced? Let’s see what IBD specialists have to say about the topic. At the 2017 Advances in Inflammatory Bowel Disease (AIBD) conference, I had the chance to ask Dr. David T. Rubin, an award winning, board-certified gastroenterologist and IBD specialist who also serves as a Co-Director of the Inflammatory Bowel Disease Center at the University of Chicago Medical Center, a few questions regarding the issue. I asked Dr. Rubin how he refers to his (ulcerative colitis) patients post-colectomy. He simply stated, “they are IBD patients.” He expanded on the topic by mentioning that removing the colon does not address the immune system and issues related, also speaking on the complications that may come along post-op and/or in the future..

I also spoke with Dr. Peter Higgins. Dr. Higgins is the director of the IBD program at the University of Michigan. Dr. Higgins is also a board-certified gastroenterologist, specializing in IBD. I started by asking Dr. Higgins the same question, I wanted to see what he classified his ulcerative colitis patients as post-colectomy: does he consider his patients cured of IBD entirely? He said the same thing as Dr Rubin. Stating post colectomy, he definitely still considers people as IBD patients. Continuing on to say, “All ulcerative colitis patients have autoimmune intestinal disease. The genetics and the state of the gut immune system do not change after colectomy.”

IBD is not black and white

It’s much more than just Crohn’s and Colitis. There is much more to consider than just the colon and/or the immune system. There is no cure for any form of IBD. Patients should be aware of this. As Dr. Higgins stated, “70-90% of patients will feel (nearly) ‘cured’ if expectations are set properly.” A j-pouch is a treatment option that can help greatly. It may improve quality of life for many patients, but an improvement is not the equivalent of a cure.

The importance of proper expectations cannot be stressed enough. My surgeries were difficult and didn’t come without risks. I do not regret having my surgeries and I would recommend consideration of this option to other ulcerative colitis patients (depending on the circumstance), but I would also recommend doing your research and making sure you have a knowledgeable gastroenterologist/IBD specialist on your team.

Stay tuned to Shawntel’s blog to read more about her interview with Dr. Higgins.

Shawntel Bethea is a Patient Advocate and Blogger at ChronicallyStrong.com. Shawn was diagnosed with Ulcerative Colitis at 17-years-old and now works to raise awareness for IBD as well as Mental Health / Illness. She uses her story to comfort and empower patients to become partners in their own healthcare.

Different strokes for different folks: Art Therapy and IBD

May 7, 2018May 7, 20183 Comments

Coloring books aren’t just for kids, they can be a helpful calming tool for those who battle chronic illness. The simple act of coloring intricate shapes and patterns allows us to enter a meditative mental space. Once you enter this state of calm amongst the stress surrounding your life, you can take in the positive messages of a coloring book.

I recently connected with an artist named Alia who created a coloring book specifically geared toward those who battle inflammatory bowel disease. It’s called “Crohn’s and Colitis: Color to Cope.” After watching her sister battle Crohn’s disease for more than 20 years, she was inspired to use her talents to make a difference.

Alia says, “Seeing how much my sister suffered, physically and emotionally with Crohn’s inspired me to create a coloring book. The psychological aspect of coming to terms with IBD is very underestimated, especially for young women. I wanted to create something to make her feel better. I noticed there was a limited number of informational books available. Adult coloring is a proven stress reliever and engages the limbic (emotional) brain. It helps you enter a ‘flow’ like state. I thought pairing inspiring/supportive quotes with images would help anyone suffering with IBD process what they are feeling.”

See the support in the palm of your hands

The coloring book is a visual representation of support that many of us in the IBD community yearn for. It validates and honors our experiences—no matter what age you are. Flipping through the pages, you’ll see quotes and images for times of stress, sadness and laughter. The coloring book provides an accessible way to release stress and get motivated to take on the day.

Since the coloring book launched, Alia has received amazing feedback from the IBD community. Here’s an example shared on Instagram:

“Thank you for creating this coloring book. I was diagnosed with Crohn’s at age 17 and am now 33. After four surgeries and two ostomies, as well as a lifetime of stories that no one would truly understand unless you were in my shoes, I think this book is very therapeutic and I appreciate your empathy and support. Thinking of you & your sister. Much love.”

The inspiration behind the art

As someone with a creative mind whose passion lies in art, Alia did research within the IBD community to see what types of images might resonate, along with key messages and emotions. Safe to say, the girl did her homework!

Alia went on to explain that coloring calms the amygdala, which is the part of the brain that controls the fight or flight response. This part of the brain is often on high alert during periods of stress or illness. When we’re fatigued, and our energy is low, coloring isn’t taxing, it can take us back to our childhood. A time of life that was most likely more carefree. Whether you’re at home or in a hospital bed, the coloring book can serve as a helpful tool in your day-to-day management of your illness.

How to get your hands on a copy

The coloring book is available on Amazon in the United States, the UK and Europe. Click here to purchase “Crohn’s and Colitis: Color to Cope.” The coloring book is published under Alia’s author name: “MeMoments Creative”.

Follow Alia on Instagram: @crohns.colitis.color2cope

Along with IBD, Alia has also created coloring books geared towards infertility. Her most recent book targets mental health—depression and anxiety. She plans to create more coloring books in the future that can serve as a support tool for other patient communities as well.

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

April 30, 2018Leave a comment

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. Fast 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. I’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. Your 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. Whenever 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

April 23, 20181 Comment

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. It’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. As 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. So, 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. Each 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

April 19, 2018April 19, 2018Leave a comment

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:

–A 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. The 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 has donated 100 uniquely designed quotes geared towards helping you find and live your purpose everyday.

Here’s how you enter the contest on Instagram:

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

@thegreatbm

@rockswithsass

@marliwilliams

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

The giveaway ends Saturday, April 21^st 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

April 16, 2018April 16, 2018Leave a comment

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. Since 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.” Then 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. Only 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

April 9, 20184 Comments

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. It 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. Instead 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. This 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

April 2, 2018April 2, 20185 Comments

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. Throw 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. Becoming 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. 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 hope 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.

5 tips for finding flexibility within yourself while battling chronic illness

March 26, 2018Leave a comment

I’m a planner. Always have been. Always will be. But, as my grandmother always used to tell me, “Tell God you have a plan, and he’ll laugh at you.” That seems to be the case all too often for those of us in the chronic illness community. If you’re like me, each flare up and hospitalization has occurred completely out of the blue. I’ve been blindsided each and every time. I’ve worked a full day, trained for a half marathon, taken a road trip…you name it…and BAM…hello, bowel obstruction or abscess.

So, how can we go about our lives as normally as possible with the ever-looming dread of the next setback and flare? It’s easier said than done, but it is possible. I’ve battled Crohn’s disease for nearly 13 years, this perspective and knowledge took time for me to gain. When I was first diagnosed, flexibility and patience weren’t in my vocabulary. But, like all things in life, time helps us heal and time teaches.

Here are five helpful tips for finding flexibility while taking on your illness:

Do your best to live in the now. Rather than focusing on the past hiccups in your journey, live in the moment. Feeling well? Capitalize on this. Go outside, meet up with friends or family, get some exercise. It’s these fleeting moments of invincibility that provide us with a chance to live like the rest of society. It may seem simple, but recognize these moments, verbalize them with loved ones. Celebrate the small joys, that are a big deal.
Stop beating yourself up over what could happen. Many people in the chronic illness community talk about how common post-traumatic stress disorder (PTSD) is. We’ve all faced some challenging, debilitating moments that have shook us to our core. Of course we don’t want that to happen again. Don’t place blame on yourself. Instead, give yourself credit for all you do on a daily basis to manage your disease—whether it’s watching your diet, taking medication or making an effort to practice self-care.
Put your health first, don’t push yourself to the brink. Nobody likes to cancel plans or be a no-show at big events and social gatherings, especially when you’re actually looking forward to them. But, by putting other people’s needs before your own and worrying about what people might say or think of you—you’re only putting yourself in harm’s way. Be mindful of how friends and family members react when your disease is symptomatic. Are they supportive and understanding, or do they make you feel bad for bowing out? When you’re too tired, in pain or struggling, that’s a message from your body telling you to slow down. Please listen.
Roll with the punches of treatment. Trying to wrangle a chronic illness into control is exhausting. It’s constantly a chess game. When you no longer respond well to your biologic, when you’re put on a new medication, when you’re told to try eliminating sugar, dairy, gluten or all the above…try to give everything a shot and a chance. Think about the risk vs. the reward. It’s emotionally draining when nothing seems to be working or helping to ease your pain, but, staying positive and open helps us all physically, emotionally and mentally. Keep an open mind with your healthcare providers and have two-way communication. Educate yourself, learn about the clinical trials and treatment options out there—be your own best advocate. Connect with others who are living your same reality. Trust in other peoples’ journeys, but recognize your journey is unique and so is everyone else. Each person’s IBD presents differently.
Be the first to admit when you need help. By telling someone you are struggling, hurting or worried, you are not showing weakness. You are not complaining. If you are going through a dark time and wonder how you’re ever going to overcome a current setback, lean on your support system without hesitation. Internalizing your pain will only make matters worse. You’re still brave and resilient, no matter what.