My top 5 wishes for those with IBD

As we bid farewell to 2018 there is much to reflect on. Each year brings new experiences, relationships and opportunities. Some years leave more of an imprint on our memory and on our heart, than others. When you think back on the past 365 days what were the highlights? What were the low points?

IMG_4926For me—the past nine months I’ve been incredibly grateful to have another healthy pregnancy, that silenced my Crohn’s symptoms. I’m also celebrating 3.5 years of no IBD-related hospitalizations or ER visits! The cherry on top was the release of Citrate-free (pain-free) Humira this year! After more than a decade of giving myself the painful injection, the new formula has greatly improved my patient experience.

Here are my 5 wishes for you in the days ahead:

  1. Strength through difficult days

There’s no telling when the next flare will strike. We all know it’s not a matter of if, but when. When the going gets tough, take it one hour, one moment at a time. Try not to overwhelm yourself with worry. Go to your happy place and think back to past flares and all the hurt and pain you’ve overcome. Use the moments of your journey from the past that have tested you the most, to serve as your greatest source of empowerment. As the years go by, and your diagnosis seems like a different lifetime, use that to your advantage.

  1. Management of your symptoms

Remission is something that is possible, but there’s no telling how long it will last or for some, if it will ever become a reality. By getting your symptoms under control and well managed, whether that’s through medication, diet or both—your quality of life improves vastly. IMG_4768Celebrate the feel-good days and soak up the moments where your IBD isn’t top of mind. You have an innate sense of when your body is giving you warning signs that rough waters are ahead. Be mindful of the inner conversation going on in your head and listen to your gut. Although it tends to be our nemesis, it has a way of alerting us when things are about to get out of our control.

  1. Perspective about your experience

Use your patient journey and that of others to give you perspective. Empathize with friends and family members going through health struggles, whatever they may be. Sure, many people have it better than us, but many have it a lot worse. It’s not a competition to see who is the sickest, but rather a way of shifting our mindset and understanding that many people have struggles and we are not alone in our experiences. Like the saying goes, until you “get” a chronic illness, you don’t really “get” it.

  1. Support from those around you

Having a network of close family and friends to lean on at a moments notice plays a major role in how we take on IBD. Don’t be afraid to ask for help. Communicate the good and the bad, without fear of being judged or ridiculed. nyeblogTrust that those close to you love you and appreciate you for everything that makes you, you—including your disease. Show appreciation for your caretakers—those who live with you and are in the trenches by your side, day in and day out. Find comfort in those who allow you to be vulnerable when you need to be. Stop putting effort into relationships and friendships that don’t add joy to your life—eliminate the negativity, cut the fat, there’s no need for people who bring you down or belittle what it’s like to live with Crohn’s or ulcerative colitis.

  1. A health care team who listens

Find IBD specialists and gastroenterologists who enable you to be your own best advocate, who listen when you’re worried and address your concerns without making you feel less than or like a number. By trusting in your doctors and the care they provide you, you’ll feel much less stress about the path you are on as a patient.

My Cause My Cleats: How Chicago Bear Anthony Miller is Representing IBD

When Chicago Bear standout rookie wide receiver, Anthony Miller laces up his cleats to take on the Los Angeles Rams this Sunday, his cleats will tell a story. A story many may not be aware of. Anthony’s longtime girlfriend, Alexandra Pounders, has battled Crohn’s disease for nearly 10 years. She was diagnosed at age 14. IMG_4488

This Sunday (Dec. 9), Anthony will participate in the NFL’s My Cause My Cleats campaign, as a way to spread awareness for inflammatory bowel disease (IBD) and show support to his girlfriend. Anthony’s cleats will feature the Crohn’s and Colitis Foundation.

“Being able to bring awareness about IBD through football means a lot to me. When I wear these cleats against the Rams, I’m not only going to be representing my girlfriend Alexandra, but also the millions of people across the globe who suffer from this disease,” said Anthony.

This is the third year for the My Cause for Cleats effort. It’s a way for NFL players to take steps to visually show their support for causes near and dear to their hearts. Anthony and Alexandra have been together almost five years. Alexandra says Anthony has been there for her every step of the way, whether it’s attending doctor visits or motivating her to stay strong during setbacks.

“It feels amazing to know there is someone by my side who cares so much for me that they want to spread awareness about this illness. IMG_4487Anthony has seen me fight for so long. It makes me feel like I’m not going through this alone,” said Alexandra.

“We are thrilled to see several NFL players, including Anthony Miller, raise awareness of Crohn’s and colitis through this year’s My Cause My Cleats campaign,” said Michael Osso, President & CEO of the Crohn’s & Colitis Foundation. “More than 3 million Americans live with these diseases, and, like Anthony, even more are touched by them as loved ones of patients. Using their platform as professional athletes to speak out about Crohn’s and colitis not only helps educate the public about the seriousness of these diseases but also underscores how wide-reaching these diseases are and how important it is to have the support of loved ones.”

Alexandra’s advice to the IBD community is to put your personal needs first and try to keep stress to a minimum, while accepting support from others.

“Surround yourself amongst people who may not completely know what it feels like to be in your shoes, but people who are willing to be patient with you and love you on the days that aren’t so great. Focus on being the best possible you that you can be in every aspect…mentally, physically, emotionally and surround yourself amongst people who truly care about you, it’ll be so much easier to overcome the obstacles you face with this disease. Stay positive. Hold on tightly to your faith. And don’t let this disease define you,” said Alexandra.bears

Chicago is my hometown and where the majority of my family lives. As a Bears fan and as a Crohn’s disease patient advocate who was diagnosed in July 2005, seeing professional football players put causes like the Crohn’s and Colitis Foundation in the spotlight means a great deal. Check out the #mycausemycleats hashtag on social media to learn more about the cause.

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.

Operation “Good Health” with IBD through finding love, raising kids and building your dream

“Crohn’s isn’t what I’d call a “sexy disease” – it’s hard to invite the love of your life to share a bathroom with you. You are scared, embarrassed, worried and everything in between. However, my bathroom habits are out of my control. And, even though I’d give my arm for my incredible man, I don’t want him to know what goes on in the bathroom. I want to be sexy, a woman of mystery … and IBD sometimes isn’t… well, hot.”

If that didn’t get your attention, then I don’t know what will. Katy Love is an IBD warrior who recently tied the knot October 21 with the love of her life. Katy+Vince-12Sickness and health truly take on a whole different meaning when you live with a chronic illness. Katy witnessed her husband Vince’s compassion and character while they were dating.

She had a wound vac that was loud, smelled and made it impossible to shower. Vince loved her despite her health complications and Katy said her Crohn’s brought them closer throughout their courtship.

“I’m extremely blessed to have a supportive partner. As anyone with IBD knows, you have great days and horrible days, sometimes within the same week. I truly believe IBD has made me a better, more understanding partner. I value each day, especially days without pain. And I value Vince and his support. From day one, he’s wanted to be involved in my Crohn’s journey. Going to doctor appointments, infusions, participating in fundraisers and holding my hair when I get sick,” said Katy.

While Katy doesn’t allow her IBD to define her, it’s a huge part of her day-to-day existence. It impacts her as a mother, a business owner, a partner, a friend…and especially as a wife. Diagnosed with Crohn’s at age 17, more than 21 years ago, she’s endured 40-plus colonoscopies, multiple bowel surgeries and removal of more than 75 percent of her bowel.

Preparing for the big day

Leading up to her wedding day she instated Katy_Vince_Family_137“Operation: Good Health.” She made it a priority to get a minimum of eight hours of sleep a night, as lack of rest tends to be a trigger for her. She was on a mission to hydrate, hydrate and hydrate some more. To set herself up for success and limit any surprise flares, she planned out her meals the entire wedding weekend. For example, she does well with bland foods, like noodles, rice, chicken and (big one) avoiding alcohol. And finally, she delegated responsibilities (aka stress) to friends and family. Katy admits she’s pretty Type A and would much rather do things herself than hand them off. However, she wanted to enjoy her wedding and because of her proactive planning, she was able to do just that!

Katy is a shining example of living life to the fullest, despite her disease. She was blessed with three, beautiful, healthy children. Fall 2017 Family 1Reagan, Grayson and Carter may not understand why their mommy is in bed or why she needs to pull over on the side of the road when she gets sick, but Katy’s Crohn’s has taught her children a great deal of empathy at a young age. A few weeks ago, she was in debilitating pain and her nine-year-old offered to make dinner for her brothers. She poured them each a bowl of cereal and that was everything.

Along with motherhood, Katy has managed to have a successful career in public relations, including serving as Vice President of Global Communications for Crocs, Inc. Recently, she launched her own PR firm, Comm Oddities Inc. that specializes in food, fashion and footwear. There is nothing this woman can’t do.

Advice after living with Crohn’s for 21 years

As far as advice for the rest of us? Boulder_Headshots_043

“Be kind to yourself. I’m very guilty of getting frustrated with myself. I want to do it all, all the time. Give 100 percent to my job, my family, my friends … and some days just getting out of bed is challenging.

One of my favorite quotes about living with a chronic illness (that’s most of the time invisible) is “Those with chronic illnesses aren’t faking being sick, they are faking being well.”  That really hits home. You don’t want to burden others, so you simply say, “I’m fine” and smile. But, asking for help isn’t a weakness. Those close to you want to help, they simply don’t know how.”

 

Juggling two under two while taking on Crohn’s disease

As the weeks go by and the days get closer for baby girl to arrive, I can’t help but feel anxious and nervous about what it’s going to be like having two kids under two, while managing my Crohn’s disease. Throughout this pregnancy, I’ve quickly come to realize how my needs and health oftentimes take a backseat as I take care of my little guy. IMG_3626While I feel incredibly blessed to be in this position, it comes with its own unique set of worries.

Prior to becoming a mom, my sole focus could be taking care of myself. While hospitalizations and flare ups were always dreadful, looking back, I had no idea how much “easier” it was to go through sickness, when all I had to worry about was me. I think many IBD women are hesitant to become moms because they are fearful of being able to juggle it all. That’s a valid concern, but personally motherhood has always been something I’ve dreamed of and wanted. I wasn’t about to allow my disease to hold me back from experiencing it.

That being said—you have to find patience within yourself and a trust in listening to your body’s symptoms to know when you’re doing too much and need to slow down. You need to be willing to wave the white flag at times and surrender to your illness. You have to be willing to ask for help. You need to be confident in the fact that your children will grow up differently than others. IMG_3802They will live within a home that talks about chronic illness and experiences it each day. Your little ones will learn compassion and perspective before they are even able to truly communicate. If you have a child and chronic illness, you know what I mean.

So far, I’ve been a mom for 19 months. I’m still a rookie. I’m still in the trenches of learning how to navigate this new life. But, I’m proud of how I’ve taken on the role of motherhood and balanced my illness along with it. I finally feel like I’m in sort of a cruise control with my son. In January, everything will start anew as we welcome our daughter into the world. Reid simply can’t wait for “sissy” …he constantly kisses my belly and tries to pull up my shirt, so he can “see” her.  While I can’t wait either, the fear of a postpartum flare once again weighs on my heart. There are so many what ifs as a chronic illness mom.

What if I’m hospitalized and have to leave TWO babies at home until I’m well? What if my disease spirals out of control and I’m home alone with nowhere to turn? What if the stress of taking care of two children with limited help sends me into a flare up? What if I’m not enough? I’m trying to be proactive now to prepare myself mentally for both the magical moments and the challenges that I’ll be presented with when we become a family of four. IMG_3723Whether it’s with motherhood or with living life with Crohn’s, it’s important to remind yourself that everything goes through stages. There are highs and lows, but each moment is fleeting.

One of the most amazing parts of pregnancy when you have chronic illness is witnessing your body create a miracle, right before your eyes, after years of letting you down. It’s a beautiful reminder that despite your illness and the parts of you internally that tend to malfunction, you are still able to carry a child and bring a life into this world. Pregnancy and motherhood have given me a renewed sense of self in my patient journey with Crohn’s. Motherhood has helped me love my body again, after years of damning it. It’s shown me that while IBD has shaken me to the core and blindsided me countless times, it hasn’t taken away one of the life’s most gracious gifts and experiences.

 

How a first-grader is taking her Crohn’s and turning it into a positive

IMG_0029She’s a ball of energy and a sweet little chatter box, wise beyond her years. Seven-year-old Brooke, of Missouri, was diagnosed seven months ago with Crohn’s disease. She spiked a fever on New Year’s Eve 2017 that lasted for eight days, and from that point forward, life was never the same.

I had a chance to get dinner with Brooke and her mom, Tara, this past week. I couldn’t help but look at this little girl in awe. Despite already being hospitalized three times since March and starting on a biologic drug in August, it was as if she has dealt with the disease her entire life. She talked candidly about all the pokes of the needles and how she tells all the nurses they are her friend. She raved about the tater tots and pancakes at St. Louis Children’s Hospital. And laughed about how annoying it is when the lights go on in your hospital room in the middle of the night. She was more like a teenager, than a little girl.

Here’s how her Crohn’s diagnosis came about. After ruling out the flu, mono, strep and a UTI, doctors discovered she was anemic. The pattern of fevers continued for two months. Still no answers. As time passed, Brooke’s pediatrician started considering a GI issue. After an endoscopy and colonoscopy, IMG_0409Brooke and her family were told she had Crohn’s disease on March 2, 2018. In a matter of months, she went from being an outgoing, energetic kid to a hospital patient on a laundry list of medications. She developed her first fistula while on methotrexate and was on prednisone for more than three months.

Dealing with the diagnosis

Fast forward to this past summer and this sweet little girl received her first Remicade infusion four days before she started first grade. Brooke is the first person in her family to receive an IBD diagnosis. Her mom, Tara, says these past months have been the hardest she’s ever endured. Her mind races with the what ifs, as she navigates her family’s new normal.

“Were there signs we should’ve seen sooner? Ditarad we do something to cause this? Were we making the right decisions for her treatment and care? Brooke has a HUGE personality. When she was first sick, and before her diagnosis, she just stopped talking. She would lie on the couch for hours and hours every day. This was not my Brooke. She normally can’t sit still for more than a few minutes! I was SO scared because I knew something wasn’t right. Watching her in pain and miserable for two months while we waited on this diagnosis was miserable. You just feel helpless…all we could do was love her and pray,” said Tara.

Juggling life and family from the hospital

Tara and her family have encountered many challenges along the way. Between the costs of the medications, the hospital stays, all the tests and trying to juggle work. To say it’s been a lot, is an understatement. Tara’s husband, Josh, works from home which helps, but Tara is a preschool special-education teacher. She was out of paid sick days by the end of January of this year. Although both employers have been understanding of Brooke’s health situation, the family has taken a big hit financially.

remicadeWhen you’re going through this, you are spread so thin and it’s difficult to ask for help. We have another daughter, Haley, who is 10. Of course, when Brooke was in the hospital, either Josh or I were with her every minute. We live over an hour from Children’s Hospital in St. Louis, so it wasn’t possible to pop up for a quick visit. It was also hard for us to ask for support. We needed help mentally, financially, and logistically with many things. We have an AMAZING support system of family and friends who have helped us throughout this process.”

An advocate from the start

Brooke has been a true IBD warrior every step of the way. She doesn’t even cry anymore when she gets her IV. Brooke openly communicates about her diagnosis and is able to tell you which foods trigger symptoms, and which are safe for her to eat. She explained to me how she’ll have one strawberry at lunch at school, if it doesn’t “hurt her tummy” she has two strawberries the next day, and three the day after that. This little girl just gets it. Tara says in just a few short months, Brooke has already become a very good advocate for herself.

“Watching my baby go through this has changed me forever. IMG_2456Although I know she doesn’t know yet, what it really means to have Crohn’s, I am always so amazed by her strength. She talks about it very ‘matter-of-factly’. It doesn’t define her. I hope and pray constantly that anything that I encounter, I can deal with, the way she has dealt with this. It’s made our family stronger by seeing that we can face this together.”

A GoFundMe page has been created for Brooke and her family. Click here to submit a donation, every dollar helps!

When I looked in her eyes, I saw myself

I recently met a 15-year-old girl who was diagnosed with Crohn’s disease. Like many parents of teens newly diagnosed with inflammatory bowel disease, her mom reached out to me for words of advice and comfort. It’s not too often that upon learning this news and connecting with families that I get to meet both the parent and teen in the same room, at the same time.

Maybe this can be chalked up to pregnancy hormones. Maybe it was because my heart hurt for her. It was probably both. But, I kept getting emotional looking at her and talking to her. My eyes welled up with tears because without her saying a word, I felt and could see her pain. In that moment, I felt like I had time traveled back to the first few months of my diagnosis.

I felt the loneliness and isolation she was feeling, even though she was in a roomful of people. I watched as we ate dinner and she quietly sauntered in the hallway, behind the kitchen table to make her way to the bathroom…more than six times in less than an hour. I listened as people questioned why she wasn’t eating…and told her to get ready for dessert. Her mom telling us as she was in the bathroom that she’d dropped four pounds in the last week and only had an Ensure to drink that day. I told everyone to stop talking about food and allow her to come into the kitchen when she felt ready. I remember all too well how it feels when people are watching you like a hawk, questioning every morsel you put down your throat. Food and the relationship we have with it while taking on IBD and navigating familial relationships and friendships can feel like psychological warfare.

She pulled her mom to the side after she overheard her telling me about her medical issues and told her not to tell anyone. I touched her arm and with tears in my eyes, I quietly told her I’ve had Crohn’s for more than 13 years…and that I understood how she felt. I pointed to my 18-month-old running around and to my baby bump and told her that if she wanted a family in her future, it was still possible, despite her disease.

Oftentimes, it can be difficult to connect with teenagers, because they seem guarded and are private about their disease. For many, it’s still a top-secret part of who they are. I get it. I took me nearly a decade to share that I had Crohn’s disease with the world. There’s no sense in rushing anybody. We all find the time that is right. We all know when we feel strong enough physically, mentally and emotionally to open ourselves up to questions, opinions and thoughts from those around us. It’s completely normal to want to keep others (especially strangers) at arm’s length, because during those impressionable young years, you don’t want to be seen as different. You know the moment you say, “I have IBD.”… it’s truly your reality. Your identity, how people view you…it’s all forever changed.

A message for parents

Parents—I know it must be SO difficult to feel like you’re on the outside looking in at your child in debilitating pain as they deal with the burden of a lifelong disease for which there is no cure. If this is a “new” disease to you and your family, you probably feel overwhelmed by all the information on the internet, what you’re hearing from specialists and what is best for your child. Lean on people like me, who live your child’s reality. Ask us the questions. Talk to us about how it feels. Equip yourself with knowledge and understanding so you can get acclimated to life with chronic disease in your family, just as your child needs to. It’s a learning process for every person in the family. Have patience. I know it sucks. I know there are times you just feel like screaming from the tallest mountain… “WHY IS THIS HAPPENING!!!???” I know you are reminiscing back to when life seemed so simple. When health was never in question. There’s no use in romanticizing the past.

You must embrace your new normal and be a pillar of strength for your child. If they see you waver, if they see you upset and frantic, that will directly impact how they feel. Communicate with your child and see if they’d like to talk with someone else who is living with Crohn’s disease or ulcerative colitis. If not now, maybe later. The IBD family is strong, resilient and welcoming…and we’re not going anywhere.

 

6 ways to get involved in the IBD community: Advice from a fellow Crohn’s advocate

Social media often gets a bad rap. But, oftentimes in the advocacy and chronic illness space, it’s an incredible connector. A few years back over Facebook, I came to know Linde Parcelslinde Linde graduated from my high school and later moved to St. Louis. She currently resides in Atlanta, where she works for the CDC and does Policy work for the division of lab sciences.

We’re 11 years apart by age, but share many of the same experiences as women who battle Crohn’s disease. We’re both passionate about using our voice to show others they are not alone in their IBD journey. This week—Linde talks about the importance of standing tall, owning your illness and getting involved in your community to make a difference.

I was diagnosed with Crohn’s Disease at the age of six. Eighteen years ago, diagnosis was difficult for pediatric patients. After more than a year of tests and declining health, my family was given an answer and a lifelong commitment to caring for my Crohn’s Disease.

I’m 24 now. I just moved to a new city for my first full-time job. One of the first things I did when I moved was plug into the regional chapter of The Crohn’s and Colitis Foundation and see how I could get involved. Linde's story

I wasn’t always an advocate for Crohn’s and Colitis though. In fact, I never attended Camp Oasis because I wanted to go to “normal” camp where I wouldn’t be surrounded by reminders of my disease. I regret not experiencing Camp Oasis and making friends who “got me” when I was that age.

It took years to realize that sharing my story and spending time with people with inflammatory bowel disease (and their caregivers) could bring me so much peace, confidence, and ownership of every part of who I am, including how I was made.

Some people receive their diagnosis and jump into headfirst. They advocate fiercely for a cure any way they can. I’ve seen others resolve to live “normally” and spend many years outside of the IBD community, attempting to absorb the struggle and live their life without leaving a trace of disease.

With over 1.6 million people in the United States with IBD, and as one of the estimated 1 in 200 who have IBD, I would argue that with this diagnosis comes with a responsibility to advocate. For everyone with IBD, and selfishly for myself, I want better research. Better treatments. Better services. Better health.

And it’s not a lost cause.

Here are 6 things I’ve done to get involved that you can do too!

  1. Take Steps

These uplifting Crohn’s and Colitis Foundation charity walks happen throughout the year, all over the country. It’s a great way to rally your friends and family to take steps by your side to raise awareness and drive research.

2. Volunteer for fundraiser events through your regional Crohn’s and Colitis Foundation

I helped gather raffle baskets, advertise, and organize volunteers for the themed Trivia Night in St. Louis three years in a row with a great planning committee. I attended with my family and friends for the past three years!

3. Follow influencers on social media and leverage your own profiles to raise awareness!

Here are some of my favorite Instagram accounts to follow:

@CrohnsColitisFoundation (stay in the know)

@rockswithsass (crystals/mental wellness and proceeds go to The Foundation!)

@Natalieannhayden (of course!)–Thanks, Linde! 😉

@CrohnsCooking (recipes for IBD)

@ileostomy_crohn_princess (model and mom with an ileostomy)

4. You can be a listening ear or a venting pal –make your availability known if you’re comfortable with someone sharing your name with others who might want to talk. 

Some parents have referred me to their high school aged children with IBD or a friend of a friend. You can sit with someone during their Remicade treatment or Humira injection. A lot of college students and young professionals may not have family in town and it’s more tolerable with company. Try to be vulnerable. I openly talk about the realities of office life, dating, and farting, (yes, I just said all three of those things in one sentence).

5. Team Challenge! 

linde runI’m training for a half marathon and taking on the biggest fitness and fundraising goal of my life! I run every Saturday with Team Challenge ATL, they are the best!

You don’t have to raise thousands of dollars for research or share your most traumatic digestive adventure on social media…but for the sake of this community and for yourself, please own it. Own your patient journey in a way that furthers science and connects people. Because as much as I want to be your Crohn’s friend, I’d rather just be your friend 10 years from now.

You can connect with Linde on Instagram here: @thelindecity.

Linde is running the 2018 Savannah Rock N’ Roll Half Marathon November 3, for the Crohn’s and Colitis Foundation. She’s looking to raise $2,800. Click here to help her reach her goal!

5 summer travel packing tips for those battling chronic illness

As summer winds down, many of our travel schedules ramp up. Before heading back to school and before you gear up for that Labor Day barbeque, it’s always fun to get away for a few days with family and friends. Before you take off—whether it’s by plane, train or automobile—here are five summer travel tips.

  1. Medication and vitamins

It’s always smart to be proactive and pack more medication than you will need—you never know what travel snafu’s will come your way. The daily maintenance of your disease doesn’t take a vacation, just because you are—if anything, the change of schedule, different foods and surroundings can make your disease act up. medicine-2994788_1920I like to take 2-3 extra days of daily medications and vitamins. Along with the daily dose, pack pain and allergy medications so you have it on hand and readily available, should you need it. As someone who battles Crohn’s disease, I’ve had to fly out of the country with my biologic injection. Be mindful of how your medication needs to be stored. If it needs to stay cool, keep it within a zipped-up bag with an ice pack and remember to throw in a few alcohol swabs for good measure. Also, keep your medication on you at all times, never in a checked bag!

  1. Sunscreen

For those of us with chronic illness, the sun can be extra dangerous. Many medications put us at greater risk for skin cancer and can cause our skin to be more sensitive. Make sure you lather up and have plenty of SPF on hand.

  1. Your healthcare team’s contact info and a list of medications

luggage-933487_1280Whether it’s a business card or information that’s stored in your phone—make sure you have your doctor’s phone number readily available, should an emergency or flare up arise. It’s also helpful to keep a list of medications in your purse or wallet, so that you don’t have to worry about remembering the dosage you take or what you are on, should an emergency arise.

  1. Healthy snacks that agree with you

It’s so easy to pull over and grab fast food or eat at the airport, but oftentimes we make poor choices when we’re ravenous and desperate to get some sustenance. Pack snacks that energize you and will help sustain you through hours on the road or delays at the airport.

  1. DripDrop packets! 

Staying hydrated will prevent more than just travel headaches, 10g_Watermelon_Berry_Lemonit will help you feel your best and enjoy your trip. Pack a thermos or water bottle, and it’s as easy as using a water fountain or grabbing some bottled water and mixing up DripDrop on the go. This way—you can enjoy the sun and warm temperatures and keep your body on track for feeling its best.

The power of assuming positive intent with chronic illness

When someone questions how you manage your illness, or seems to belittle your patient experience, it’s easy to get combative and think the worst. But, recently—while on Twitter, I saw a fellow patient advocate and friend of mine respond to a tweet by saying “Assume Positive Intent” (API). This is the first time I had ever heard of the concept. It intrigued me immediately. Like most people, sometimes when words are said or actions are made—I immediately jump to conclusions and internalize what I think the person meant. Part of this is being sensitive and part of this is life with a chronic illness. office-620822_1920There aren’t a whole lot of “safe spaces” for those of us to feel understood and connected with.

Social media allows complete strangers and even those close to us to be keyboard warriors. People often feel like they can hide behind a screen and be hurtful. At the same time, just like with texting—posts on social media can be interpreted incorrectly. Rather than lash out or get defensive, take a moment to pause, gather your thoughts and remind yourself that most people wake up each day with a desire to live life in a positive way and do good in this world.

By not getting caught up in others’ actions and intent—we’re freeing ourselves of the stress that can be a key trigger to our inflammatory bowel disease and that has detrimental effects on our mental health. You will feel empowered simply by taking a moment to think about how you’re going to respond to someone else. You can’t control others, but you can control how you feel and how you react. say-yes-to-the-live-2121044_1920

No one is perfect. We all make mistakes. At the end of the day, by giving others the benefit of the doubt—you’re able to change the way you approach conflict and you’re able to rid some negativity from your life. I’m not saying never stick up for yourself and let everyone treat you how they want, but use this strategy as a way to handle your personal relationships and how you respond to others. It will say a lot about your character and make you feel in the driver’s seat, at a time you normally may feel out of control.

So, here’s my challenge to you. The next time you feel a guard go up or when you feel disappointed by another person’s words or actions—assume positive intent. bob_natalie_proposal_6615-107As someone who’s battled Crohn’s disease for over 13 years, I constantly find myself needing to take a step back and remember that the only person who’s lived my journey is me. It’s up for me to tell my story. It’s up for me to share it. It’s up to me to communicate to those when my feelings are hurt or I’m disappointed. But before I jump to conclusions, I need to assume the other person is trying to help me or learn more about my experience—rather than ruin my day or hurt my feelings. API all day, baby. Try it. Trust it. Live it.