A close-knit family: The story behind this Crohn’s blanket

There’s nothing quite like a grandmother’s love. They have a way of bringing comfort, peace, support, faith, and love to family, among many other incredible traits. IMG-2601When seven-year-old Penny was diagnosed with Crohn’s in January 2017, her grandmother, Mary, started knitting her a purple blanket. She chose the color purple because it’s not only Penny’s favorite color, but also the color that represents Inflammatory Bowel Disease (IBD).

“Penny has always had a special little gauze blanket, but I wanted to make something for her that would hopefully comfort her on days when she does not feel well,” said Mary Otto. “It’s the same idea as prayer shawl people make for those who are ill. As I knit, I pray for Penny.”

Other times, Mary says she prays for her family, for others battling Crohn’s, for those with other illnesses and diseases, and for people in general. As of now, the blanket is 44” wide and 42” long. Mary jokes she isn’t a consistent knitter and that she has a long way to go before the blanket is “adult size”. Penny currently stands 3’9”. IMG-2600

The passion project has been a special hobby between Penny and Mary. It’s Mary’s hope that in the future Penny will look back fondly on the memories and that each time she is snuggled up under the blanket she feels not only its warmth, but the warmth of her love now and always.

“I hope when Penny isn’t feeling well or in the hospital that she will find physical comfort in it (due to its weight), but also emotional and spiritual comfort because of the love and prayers that were part of its creation,” said Mary.

Every time Penny sees the blanket, her face lights up and she asks when it will be done. It’s a labor of love for Mary, every stitch made with purpose. As a grandparent, she says it’s heartbreaking to see a grandchild take on a disease like Crohn’s.

“No one wants to see their loved one suffer. I don’t like the helpless feeling when there is nothing I can do to make the situation better. I worry about Penny. I’m also concerned about her parents and brothers, because an illness like this affects the whole family.”

IMG-2918At the same time, Mary says she’s impressed by Penny and how she is taking all the baggage that comes with Crohn’s in stride at such a young age: the daily medications, the infusions, the lifestyle changes.

“Penny demonstrates so much strength, she is my little hero!” A hero who will one day hold on tightly to that blanket and not only feel the love it exudes but be reminded that she’s never alone in her struggle.

While Penny was dealt a difficult hand of cards when it comes to her health, there’s no denying she hit the jackpot when it comes to her family.

When Crohn’s Tries to Stop you from Being Super Dad: How One IBD Dad Finds Balance

The IBD community is flooded with countless female advocates. I’ve recently been vocal about the need for more men to stand up, share their stories, and be a voice for the community. If you attend a conference or an IBD patient advocate event, 90 percent of the room is female, the same can be said for social media.

This is surprising since according to the Crohn’s and Colitis Foundation, IBD affects men and women equally. That being said, in my experience speaking with men young and old with Crohn’s and ulcerative colitis—many tend to suffer in silence, downplay their pain, or prefer to keep to themselves about their struggles. While the disease may physically manifest itself and impact men in different ways, it’s the way many feel embarrassed to share their experience, that I wish could change. Colby and Hallie 1

This week—a guest post from Colby Reade. Colby is a husband and a dad who also has Crohn’s disease. He shares insight about his struggles to find a balance between IBD and family life, while offering helpful advice for how to be a “Super Dad” despite your illness. I’ll let him take it away…

I grew up believing my dad was a superhero. There was nothing he didn’t know or couldn’t fix. He would spend hours with my brother and me teaching us how to hit a curve ball or box out a defender on the basketball court. He worked insanely hard to help provide us with a comfortable life. He showed us what it meant to be a partner in a marriage. In my eyes, he was “Super Dad.”

For as long as I can recall, I wanted to live up to that image and a little over four years ago, I got my opportunity when my wife gave birth to our daughter. Nothing is more important to me than being a solid dad and husband. Fatherhood is undoubtedly the most rewarding experience of my life, but also the hardest thing I’ve ever chosen to tackle largely because it is so important to me to be good at it. Ethels Birthday

Unfortunately, life through us a curveball in 2017. What I thought was a case of nervous stomach from a stressful stretch at work turned out to be a Crohn’s flare that lasted 10 months. Not only was I terrified about all the symptoms (digestion issues, pain, fatigue, weight loss), but I felt myself struggling to take on the most important “job” I had.

I was too tired to play or engage when I came home from work…flopping on the ottoman in our living room, trying to pry my eyes open.

I was in pain all the time and struggled to find joy in daddy-daughter games.

I was terrified to be more than five feet from a bathroom so outings to the mall, the zoo or the beach were on hold.

OrchidIt took time and some trial and error, but as I navigate my somewhat new diagnosis, my wife and I have learned how to best monitor my symptoms to try and avoid future flares and take Crohn’s on as a family. In addition to my medical care, this includes some key strategies to how we approach parenting.

Here’s 5 ways we tackle parenting with Crohn’s:

  • Explain to your kiddo what’s going on. This has to be done age-appropriately of course, but it’s important that you don’t hide from your children that you are sick. It is not a failure to admit that you have an illness. Communicate to them that you are under the weather and need their help to adjust your usual routine until you feel better. My kiddo LOVES playing nurse and taking care of her mom or me when we are sick so we can make it into a game.
  • Create activities that don’t involve a lot of energy. While the digestive problems were hard, the fatigue was the worst for me. We started a list of low-energy activities I can do if I find myself mid-flare, such as board games, playing with my daughter’s doll house, and working on crafts.
  • Communicate with your significant other and boss. ThanksgivingMy wife is amazing and understands the physical impacts of a flare, but it’s my job to share with her if I’m feeling Crohn’s-y. Similarly, I have started a dialogue with my boss, so if I flare, I don’t have to pour every ounce of limited energy I have into work and come home completely empty.
  • Find an online community. It can be tempting when you are sick to start Googling your symptoms. This can be a big mistake with IBD because everyone’s case is different and the treatment plan for one person will be greatly different from another’s. However, engaging with an online community either on Twitter, through a Facebook group or an online forum, can be a great resource to gather measured feedback and share your experience.
  • Be kind to yourself. As modern, involved dads we put ourselves under tremendous pressure to be both provider and nurturer. When our bodies are compromised, it can feel like we are failing, weak, and less than. Whether you talk with a counselor, join a support group, or meditate… or all of the above, it’s important to find ways to remind yourself that just because your body is taking on IBD, you are still Super Dad.

You can connect with Colby on Twitter and Instagram (@colbyreade).

 

“My mom has Crohn’s and I do, too”: Why Sam doesn’t allow IBD to take over her life

Motherhood provides perspective. Motherhood shapes us in a way we didn’t know possible. When you’re a mom with IBD, your past and current struggles make you look onward to the future in a different way. Meet Sam Zachrich. _ADP6012She’s a 30-year-old mom and wife from Utah, who works full-time outside the home. She’s battled Crohn’s disease since December 2011.  

Even though she was officially diagnosed a week before her wedding (imagine that!), Crohn’s is something that was a part of her life long before that. Her mom, also has the disease. This week–Sam shares her experience taking on motherhood and marriage, while juggling everything that comes along with a life of chronic illness.

Like someone with a bad knee before a rainstorm. I knew I was not feeling well and the results of my colonoscopy would reflect that. More medication and more doctors is all I heard from my GI. My husband Nate will tell you a different story. He is always my biggest supporter and remembers way more than I do after waking up from a scope. He heard “Sam things look better… your colon is healing… but there are some issues.” All I heard was “issues”. As a Crohnie, it’s easy to focus on the negative of our disease. It’s easy to forget to celebrate how far we’ve come and the milestones we’ve accomplished throughout our journey.

Growing up with a parent who has IBD

I knew my mom had Crohn’s from an early age, but I didn’t fully understand how much pain and hardship it caused her, until I was in college. I had a wonderful childhood, filled with amazing memories. I don’t remember my mom being sick very often. There were hospital visits here and there, I just always had faith that she would get better.

48397243_10213280363469781_8737081387036704768_oMy mom did an amazing job making sure our lives did not revolve around her disease. She did her best to stay healthy and support us. I want my daughter to have the same experience as I had growing up. I don’t want her to ever feel the burden of my disease. I want her to know that no matter how difficult life gets, there is always hope. My mom is the one person I can call who fully understands my struggles. To have another family member that has and is dealing with the same chronic health issues is a huge support. I am very grateful for her.

A mother’s love

My mom was with me for every scope and doctors appointment leading up to my diagnosis of Crohn’s. She was a shoulder to cry on and a listening ear because she completely understood. Feeling guilty is not something we do easily in our family. We try to stay the course and figure out next steps. I think to some degree she had guilt, but she wanted me to stay strong and knew I would be alright. She has always told me to focus on what I can change in the moment.

To this day, she reminds me: Crohn’s will always be apart of your life, it’s what you do with it that matters. 405889_2533476622399_548286302_n

I try not to focus on passing this disease to a third generation. I know that one day I might be in the doctor’s office with my daughter listening to the same talk I received December 2011. Hopefully we will never have to go there, but if we do, I know that the support and perspective that I’ll be able to provide my daughter can make or break a diagnosis.

In sickness and in health, literally

My husband, Nate, was there from the start of my Crohn’s journey. samI remember explaining to him at one point that this disease would be something I will deal with my whole life and it was okay for him to leave me. It’s really hard to put my relationship with my husband into words. When it comes to Crohn’s, the thought of all he does to support me, makes me tear up. He knew that after our wedding day he would take my mom’s place at all my appointments and be my sole caregiver. Nate never shied away from the challenge and it makes me love him more and more everyday. He is my number one and having support from him means the world to me.

Despite receiving the IBD diagnosis a week before getting married, our wedding day was amazing! I look back and don’t remember being sick (thanks to the steroids!). Throughout our lives there will be days we get to be “normal” and we try to embrace those times as a couple and as a family. Don’t allow for this disease to control all aspects of your life. Have that amazing wedding and find a spouse who loves you regardless of your illness. You deserve that and so much more!

Finding peace through support and letting go

Fast forward to this month. Following my scope, I had surgery to remove an abscess. My husband and I had planned a date night for that evening and already had a sitter. We traded our dinner and play tickets in for a night out at the hospital. This was my second surgery to remove an abscess. It doesn’t get any easier, but I have a different mindset now that I am a mom.  _ADP6466

It’s always hard to leave our daughter Kamryn. We are very blessed to have an amazing support system that we can rely on. It’s so helpful to know that when you are going through a medical procedure, the person taking care of your child loves them as much as you do.  We do not have any biological family in Utah. However, we have an amazing church family that really loves and takes care of us just as well.

My advice to fellow IBD parents is to find peace in knowing that your child will understand one day how much sacrifice you have made to fight this disease. There will come a day when they will ask you questions and you can share your experiences with them.  

I am healing well and my doctors are monitoring things to make sure my Crohn’s stays under control. I have had routine blood work since the surgery and it looks like I will be going in for an MRI this week to check on my liver. While these unexpected twists and turns in my patient journey don’t get easier, I’ve learned not to focus on what I can’t control.

The bright spot of my journey

I was blessed to be able to have a baby girl in January. After so many years of hating my body and being sick, my body finally showed me what it’s capable of. I know that my journey with Crohn’s has made me the best mom possible for my sweet Kamryn. Even though my body may be riddled with illness, it was still able to create a perfect miracle. sAM

I have learned to deal with life in a completely unorthodox way, because of my disease. I am a better mom, wife, daughter, sister, coworker, employee, and friend. Don’t get me wrong, there are days I wonder ‘God, why me, why this disease?’ But I know deep down I am stronger for it and He will see me through the tough times and setbacks. As someone who grew up with an IBD mom, it’s my hope Kamryn will someday look at me the same way I look at my mom.

 

Why I refuse to mourn who I was prior to Crohn’s: A birthday reflection

This week, I turn 36-years-old. Birthdays are a time of reflection, celebration, and excitement. Last month marked 14 years since I was diagnosed with Crohn’s disease. A chronic illness that has shaped my adult years and my identity.

I recently saw a post on Instagram about imagining life prior to illness. IMG-8194Prior to the challenges and the hurt that coincide with having a disease that you expect to have until your dying day. It’s heavy and can be overwhelming. There’s no cure for IBD and once you are told you have it, your world and your life is forever altered.

When I see childhood photos of myself and think back on my wonderful memories with family and friends through my college years, that girl often feels foreign to me. There are a few things I wish I could whisper in her ear:

“Stop taking your health for granted.”

“Soak in this feeling of invincibility.”

“Make the most of every single day.” IMG-8201

“Enjoy how carefree it feels to never have to worry about what the next day will bring.”

“Soak in the comfort of never needing medication or going through painful pokes and prods.”

“Have more empathy for those around you who aren’t as lucky.”

the list goes on. Hindsight is 20/20. I can’t fault myself for floating through life the first 21 years. I’m glad I had no idea of what was to come. At the same time, I wouldn’t trade what the last 14 years have given me:

They’ve brought me debilitating pain that built my strength.

They’ve brought me sorrow that’s made the sunshine feel extra bright on my shoulders.

They’ve brought me fear that’s been replaced with resolve. 

They’ve brought me lonely moments that are now filled with the laughter of my little ones.

They’ve brought me years of feeling unlovable, but then finding magic with a man who never once shied away from my illness. image (66)

They’ve brought me extreme vulnerability that’s now coupled with gratitude. 

They’ve brought me scars internally and externally that I now see as battle wounds.

They’ve brought me years of embarrassment, that’s transformed to a scarlet letter that I wear with pride.

They’ve brought me feelings of worry that have been washed away by clarity and perspective.

On this birthday and moving forward, rather than mourn the loss of who I was up until age 21, I choose to celebrate who I’ve become the last 14 years. While this illness has tried time and time again to rob me of my joy, it’s provided me with evidence of my resilience. Since my diagnosis, I’ve worked full-time as a TV news anchor, reporter, and producer, I’ve gotten married, I’ve had two children in 21 months, and I’ve become a steadfast patient advocate. balls-1786430_1280Crohn’s has shown me that just because I get knocked down with a flare, doesn’t mean I can’t bounce back and be better. With Crohn’s, life often feels like you’re in the passenger seat and your fate is out of your hands. Rather than sit back passively, I choose to grab the wheel. Cheers to 36!

Three years of Lights, Camera, Crohn’s: 10 Tips for Becoming an IBD Blogger

Tomorrow (July 23, 2019) marks three years since Lights, Camera, Crohn’s became a reality. Three years since I closed my eyes and took a major plunge, wondering if my words and effort would make a difference. Three years since I decided it was time to stop living my IBD life in the shadows, and instead bring my personal struggles and triumphs to the forefront. A31AD785-CDF7-43D5-BA1D-BFDDC69B493EI chose to blog and become a patient advocate for several reasons. I was tired of feeling isolated. I wanted to be a voice for the newly diagnosed, as well as the veteran patient. And, as a journalist, I’ve always had a love for the written word. For me—expressing myself through writing comes a lot easier than saying the words out loud.

July 23rd is a big day on the calendar each year for me—it’s the anniversary of my Crohn’s diagnosis (14 this year!), my dog Hamilton’s birthday (He’s turning 11) and it’s the day I met my husband online (6 years ago!). If that’s not a sign that things happen in threes, I don’t know what is! Knowing this, I had to launch my blog on this day. Rather than focus on how many years I’ve been riddled with a chronic illness, it’s a way to celebrate how far I’ve come on my patient journey.

I’m going to do a little humble brag right now. Since launching my blog in 2016, I have never missed a week of posting fresh content. Through two pregnancies and being a stay at home, IBD mama with a now 2-year-old and six-month-old, I found a way to stay true to my own personal deadlines, because this blog, and this community and IBD family are so important to me. 41113C90-2C99-4252-B69B-212DB2295A33In that time, I’ve shared 171 new articles (because some weeks I post on Mondays AND Wednesdays). Over the last three years, more than 105,000 people from around the world have checked out Lights, Camera, Crohn’s. Could the articles be organized better? Yes. Could the design be snazzier? Yes. But, my focus as an IBD blogger and advocate is to give you the nitty gritty. I’d rather spend my time and energy on content vs. design.

One of the most common questions I receive is, “How do you become a patient advocate?” or “How do you become a blogger?” It obviously takes time, passion, and commitment.

Here are my top 10 pieces of advice for you, that I wish I would have known before blogging.

  1. Write for the reader and for yourself. As patient advocates and bloggers, it’s generally our own personal experiences that shape the content we share. That experience and viewpoint is invaluable, but remember—the reader isn’t here to check out your diary. They are here to learn ways to improve their patient journey, to educate themselves. When you write, write to the people reading. Don’t bore them with every.single.detail. of your doctor appointment. Use that experience as the foundation and springboard into a larger discussion that is easy for others to relate to. Think “news people can use”…otherwise, why read your stuff?
  1. Be bold. Be vulnerable. It can be very stressful and overwhelming to put your whole health story out there to the public. If you’re like me, I kept my disease to myself and close family and friends for a decade. Going from that—to sharing my story with thousands, is polar opposite. But, I can tell you, once you open up, you won’t regret it. The moment you break down your own barriers and show your true stripes, you open yourself up to endless support and quickly come to realize how many others understand your reality.
  1. It’s not a competition of the sick. Just because you haven’t started a biologic, just because you haven’t had surgery, just because you don’t have a bag, doesn’t mean your patient journey is any less significant or important. IBD impacts each and every one of us differently, but there are so many parallels along the way. Trust that what you are going through physically, mentally, and emotionally is something many people can relate to. I haven’t been hospitalized for my Crohn’s since August 2015 (before my blog went live!), but in my 14 years living with the disease I’ve experienced so many highs and so many lows, so many flare ups and so many feel good days. It all matters. And it’s all a part of it. People don’t just want to see you in the hospital or struggling, they want to see other aspects of your life, too.
  1. Be patient with yourself through the process. Writing about life with IBD can be emotional. It can be draining to bring up old memories that were the most difficult days of your life. It can also be cathartic. Write stream of consciousness-style. Rather than thinking about each word and constantly hitting the delete button, just let it flow. Edit yourself later, not in the moment.
  1. Have a thick skin. Being a patient advocate and a blogger isn’t always sunshine and rainbows. You are going to receive both public and private messages from naysayers. People may question why you aren’t “healing yourself with food” or “why you need a biologic”. The only person you need to answer to is the person looking back in the mirror, along with your physicians. No matter how much you share online, no one has the FULL story of your own personal experience. Let the judgers, judge…and keep on trucking. Keyboard warriors have a way with words, don’t allow others to bring you down or stress you out. That’s the last thing we need living with IBD. I’ve come across a few instances on Twitter, where banter got pretty heated. When my heart started racing and my stomach started hurting, I knew it was time to block them and move on. Don’t be afraid to block when needed.
  1. Remember you are a patient, not a medical professional (unless you are both!) It gets dangerous when patient advocates spout off medical advice to those desperately looking for answers. When people come to you for support or with questions about how to handle their care—always advise them to talk with their care team, and remind them you are not a doctor, but this is what has worked for you. Yada Yada Yada.
  1. Lean on others in the IBD family for guest posts/sharing your content on social media. Advocacy is not a competition. There is room at the IBD family dinner table for ALL of us. Interact with other people’s blog articles and social posts. Show them the love, chances are, that love will be reciprocated. Oftentimes, it can feel like everything you are doing is falling on deaf ears (thanks so much, Facebook algorithm)…that being said, don’t focus on the “likes” and the “comments”…if your article or your words help one person or one family, you’ve made a huge difference.
  1. Always be on the lookout for content. The former TV news anchor and reporter in me always has my eyes and ears open for the next story. Look at social media and see what’s trending in the IBD community. Ask your followers what topics they’d like to see more on. Set up Google Alerts in your email to see the latest about IBD research and news. Pay attention to people’s stories. When someone reaches out to me with a question, I often dig a little deeper and see if this is something that would make for a good article. Every single person has a story to share, it’s just a matter of discovering what that story is.
  1. Be authentic and true to who you are. Oftentimes businesses and companies will reach out to patient advocates looking for promotion or support. Don’t be a “yes-(wo)man”. Only promote causes and products that you genuinely believe in. Don’t sacrifice your hard-earned credibility for a few bucks, because your credibility is priceless.
  1. Stop selling yourself short. Your IBD life and story is valuable. Gone are the days when big pharma and businesses can tap into us as resources for free. We’ve all gotten smarter about this. Your painful journey hasn’t been easy. But, with that journey, you’ve gained a perspective that businesses are thirsty for. They NEED our insight. They NEED our input and perspective. Unless you live with IBD personally, you can’t fully grasp what it’s like. Sure, volunteer work for the Crohn’s and Colitis Foundation is one thing, but as soon as someone wants you to be an “influencer” or speak at an event, etc. know your worth and don’t ever be afraid to ask what the compensation is.

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I’m hopeful that three years from now on July 23, 2022, I’ll still be blogging and will still be a vocal voice for the IBD community. Thank you for sharing in my journey and for pushing me to be better. Thank you for reading and for caring. Thank you for being a listening ear and a watchful eye. Thank you for walking alongside me through pregnancies and motherhood as a woman with IBD. I promise to deliver more content that helps guide you through your journey and show you just how capable you are of being everything you ever hoped for. God bless.

XO,

Natalie

My Tribute to the IBD Family: You are visible

The theme of World IBD Day (which was yesterday, May 19) was to make the invisible, visible. Here’s my tribute to my fellow IBD warriors and their caregivers.

To the newly diagnosed…

To the person going through their first procedure whether it’s a CT scan or a colonoscopy…colonoscopy

To the parent of a child battling this disease…

To the person being wheeled in for their first surgery…

To the person taking their first steps out of the hospital bed while on the road to recovery…

To the person glancing at their incision for the first time…

To the person looking in the mirror and not recognizing the reflection looking back…

To the person on a liquid diet because it’s too painful to eat actual food…

To the person on a steroid feeling unattractive, irritable and high strung…

To the woman wondering if her body is strong enough to carry a baby…IMG_3723

To the man who’s concerned about being able to be a source of strength for his family…

To the pregnant woman worried about flaring and how it will impact her unborn child…

To the person beginning a biologic or a new medication, who’s petrified of the laundry list of side effects…

To the person crying themselves to sleep because they feel alone in their struggles…

To the mom who feels like she’s waging a never-ending war against her fatigue…

To the teen wondering if they’ll be able to go to college…

To the college student embarrassed of going to the bathroom in the dorms…

_F6B4724To the person nervous to open up in a relationship and disclose they have this disease…

To the person who had to get out of a relationship or was left because the support was lacking…

To the bride or the groom worried about having disease symptoms on their wedding day…

To the person shaking with fear in the parking lot of their doctor’s office, nervous to walk in and face the music…

To the person boarding an airplane nervous about symptoms and being around germs…remedy-nsmith-stlouis-1284

To the person who’s just been told another medication has failed them…

To the person lacking a genuine support system…

To the person who feels misunderstood, frustrated, and judged…

To the person sitting on the toilet contemplating whether a flare is starting to strike…

To the person in the passenger seat being rushed to the emergency room, yet again…

To the person getting their blood drawn staring at a focal point on the wall…

To the person who is constantly approached with the latest and greatest “fix”, “cure”, or way to “heal” …

natalie mothers dayTo the person worried about passing this dreadful disease onto their children…

To the person with the bad veins dealing with their eighth IV poke…

To the person who feels lost and misses who they were prior to being diagnosed…

To the person lying in the fetal position trying to get through this moment…

To the community who feels like home to me.

I see you. I hear you. I believe in you. I’m here for you. I love you.

We’ve all been these people. We all know this is the reality of life with IBD. It’s not easy. It’s scary. It can be overwhelming. The emotional pain can oftentimes be worse than the physical pain. Living with a chronic illness, no matter what your age or circumstance is tough. There’s no sugar coating it.

At the same time, I want you to whole-heartedly believe that while this disease can rob you of joy, it can also provide you with perspective, strength, empathy, understanding, gratitude, patience, and clarity. You my friends, are far from invisible.IMG_3434

I see you. I hear you. I believe in you. I’m here for you. I love you.

Thank you for helping me to see the light on the dark days, inspiring me when I need it most, and showing me that there’s much more to life than being a patient. I hope I do the same for you, always. Use your journey. Use your story. Use your setbacks. Use all that you are, to inform, educate, and implore others to want to better understand your reality. I promise, you won’t be disappointed.

XOXO-Natalie

From one IBD mom to another: An interview with Tekhni Wovens Founder, Alisa DeMarco

When a family member is diagnosed with IBD the same week as you, it can be sort of a saving grace.

Alisa

One month post diagnosis–dealing with the side effects of prednisone.

My cousin’s wife, Alisa DeMarco, was told she had Crohn’s disease a matter of days before I was in July 2005. At the time, she was one of the only people I knew who had the condition—one of the only people I could confide in who could genuinely understand my reality. At the time of diagnosis and throughout your patient journey—these bonds and relationships are the glue that keeps you together.

alisa3Now, nearly 14 years later—her and I have come a LONG way. She’s on Remicade. I’m on Humira. We are both mothers. We are both wives. Alisa didn’t allow her disease to stop her from following her personal or professional dreams. In 2013, she left corporate America and founded Tekhni Wovens. As an IBD mom and successful business owner, her perspective and ability to overcome the odds is something we can all admire and look up to. This week—an interview with a woman I’m lucky to call family.

NH: What inspired you to create Tekhni Wovens?

AD: As a full-time working mother who enjoyed caring for my children with the help of wraps and slings, I quickly found myself as part of the babywearing community.  Over time I shifted from consumer to manufacturer, designing textiles when I didn’t find what I was looking for— a fashion-forward aesthetic in easy-to-wear blends at accessible prices.

NH: As a woman with IBD, a mom of four, and a wife–how do you balance leading a successful business and keeping your disease symptoms under control?

AD: Balance is a hard ideal to maintain– and I am not always successful! Image-58 I multi-task everything, stay on top of my biologic infusions, rest when possible and, plan my diet loosely around a mix of SCD and low gluten eating. Getting help is difficult, but I feel lucky to have a supportive husband and local family network. My travel schedule wears me down– but thankfully most of my disease symptoms are well controlled.

NH: What advice do you have for fellow IBD’ers who have big dreams but are hesitant to go after them because of their disease?

AD: Your dreams don’t have to be an all or nothing pursuit!  Tekhni started as an idea to make a better product and help support my family… and evolved into multifaceted business with accounts worldwide.  However, it took years, and many winding paths to get there. Know that there’s no deadline or requirement for any passion you want to pursue.  Start with an idea, and break it down into bite-sized pieces. Your disease is only one small part of your identity, and cannot prevent you from planning and dreaming and accomplishing daily tasks on your own timeline. Image-56

NH: Why are you passionate about babywearing?

AD: Babywearing and attachment parenting are very close to my heart– they are natural extensions of our mothering instincts. They help me care for my young, closely-spaced children while working full-time and managing a household with a husband who is often away for work. Image-55Babywearing helps me effectively multi-task and meet my all children’s needs at the same time. It also helps address postpartum depression, by syncing mother and baby, and raising oxytocin levels.  I believe babywearing is a necessity that should be taught to every single expecting parent and caregiver!

NH: Why is babywearing so beneficial for those with IBD in particular?

AD: Babywearing is a perfect fit for people with autoimmune diseases– it helps you hold, carry, and comfort your baby while taking weight and strain off of your back and hips. For difficult days, it can literally be another set of hands.  And keeping baby in proximity leads to less crying, less stress, and more rest for both baby and mother. Image-60As a bonus, a variety of baby carriers can be adjusted to accommodate an ostomy or j-pouch.

Stay tuned to my Instagram account (@nataliannhayden) for a giveaway on Friday, May 17. We’ll be giving away a Studio Tekhni Ring Sling! The winner will be announced on World IBD Day (May 19). Good luck!

 

Why I cried talking about Crohn’s at my friend’s rehearsal dinner

I stood before a room of strangers last week and shared some sentiments about my friend Jenna who was marrying the love of her life the next morning. Chances are—you’ve been at a rehearsal dinner and participated in the ‘open mic’ opportunities.

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Jenna’s birthday, 2009

As a former TV newsie, I always enjoy a chance to speak and articulate my feelings! I started out talking about how we knew one another and the type of friend she was—and then I went for it. I broke out the “C” card…the “Crohn’s” talk. Most of the people in the room were strangers to me until that night, some probably had no idea what Crohn’s was.

In that moment, I tearfully thanked my friend of more than 12 years in front of a roomful of people for always being present, always genuinely caring and for always being there not only in life’s amazing moments—but also through every flare up I’ve experienced along the way. When you are diagnosed with a chronic illness, you don’t stop and think twice about which friends are going to be there, you just expect it. Unfortunately, you’ll find many ‘friends’ tend to fade to the background and will continue to do so throughout your patient journey.IMG-0841

This friend—is the opposite. This friend has sent me countless snail mail letters on adorable stationary—some with Ryan Gosling’s face plastered all over it, others with an inspirational girl gang type quote. Each time I’ve been hospitalized, she’s been my constant ray of sunshine. Always texting. Always calling. Always checking in on me. Her efforts seem effortless. And that my friends, is priceless. Rather than feeling guilt for being “that friend” she makes me feel empowered and loved.

When you live with IBD (or any chronic illness for that matter)—seek out your Jenna(s). IMG-0838Find the people who lift you up. Trust in the bonds you create with those who are there for you because they want to be out of the goodness in their heart, not as an obligation. Hold on closely to the relationships that spark joy and don’t extinguish your flame. Lean on those who are willing to give you their hand to lift you up, even when you don’t ask for it.

At Jenna’s rehearsal dinner, I wanted her to know. I wanted her to know how her compassion and empathy meant the world to me. I wanted her to know how much I appreciate all the effort she continually puts into our friendship, despite living out of state from one another for the past decade. I wanted her friends and family members, and her now husband to see the impact she’s made on my life and how her efforts to be there, make her who she is.

My hope for the IBD family is friendships like this. The ones that stand the test of time. The ones that ground you. The ones that show you the beauty of another’s heart. The ones that remind you that you aren’t ever going into battle alone. The ones that serve as your light when the days are dark. They exist. They are possible. You just need to find them.

Wedding photo cred: Savannah Kay Photography

Writing for a reason: IBD Pen Pals

Who says snail mail is a thing of the past? For one 10-year-old in the Chicagoland area, connecting with fellow IBD pediatric patients is helping her cope, comfort and help others as she takes on Crohn’s disease herself. emily4Meet Emily. This past February she received her chronic illness diagnosis. Even though she’s brand new to IBD life, she’s taking all the pain and all the setbacks in stride.

Her mom, Michelle, says watching her young daughter go through Crohn’s has been a punch in the gut.

“It’s overwhelming, lonely, and mentally draining for everyone involved. Her little body has been put through so much in the last few months and she just goes along with it all. I wish I could’ve done all the horrible tests and take away every ounce of her pain. My heart breaks every time she gets poked, every time she takes medicine, every time she has to do a test, or when I send her to school, knowing she feels horrible.”

Emily’s courage and compassion for others has inspired Michelle. Her Crohn’s diagnosis has spurred an interest to connect with other IBD kids. Rather than take on the disease in silence, Emily finds there is strength in numbers, a purpose for her pain. Emily penpalHer mom was able to reach out to fellow parents on Facebook about a pen pal program.

“How cool to come home from school and have a couple letters waiting for you from kids all over the country?!? Emily has already made 12 new friends with IBD from the U.S. and the U.K. I never want Emily to feel alone on this journey nor do I want any other kids to feel alone. I want Emily to see that other kids who have IBD are living a “normal” life and that she can, too! There may be days when I won’t understand what she’s going through, but her new friends will.”

Emilyand michelleFrom a parenting perspective, the pen pal group has introduced Michelle to other mamas going through the same fears and experiences. The connections have brought her peace of mind as she navigates these new waters with her daughter.

“Emily and I are firm believers in spreading positivity and what you give out, you get back. It’s up to us to find the good in this situation and what better way than emilylettermaking new friends? Friends who understand and continually cheer you on, no matter how far they are. My hope is that Emily will make life long connections and that these letters will serve as a constant reminder that she is never alone.”

Interested in joining this pediatric pen pal group? A Facebook page is in the works. In the meantime, you can get involved by emailing Emily’s mom, Michelle: positivelyshelly@gmail.com.

Putting the war paint on and beating Leukemia: Lukas’s journey to wellness

I handed a few toys to the cashier. She smiled and asked me whose birthday it was. I paused and said…actually this is for my cousin’s son—he was just diagnosed with leukemia yesterday. Saying those words out loud was physically painful. Our family’s new reality seems surreal. IMG_8929I never dreamed I’d be walking around a toy store looking for gifts to comfort and distract my cousin’s darling, smiley, 21-month-old son. But here we are.

We all know how heartbreaking and scary cancer is. We’re aware of the devastation it causes and the havoc it reeks on thousands of families every single day. When this disease chooses to present in a child, a baby, it rips your heart out and reminds you of how fragile life is.

I come from a big, Greek family. We are incredibly close. Our friends even know who our cousins are. All our lives are intertwined in a beautiful way. Everyone is always amazed at the tight bond we share with one another, often not letting a day go by without being in contact. It’s all I’ve known my whole life. At times, many of us take this closeness for granted—because it’s our norm. When the going gets tough though, our family rallies like no other.

IMG_8786When we got the call March 19th that my cousin Nicole’s sweet boy Lukas was diagnosed with ALL (acute lymphoblastic leukemia) my mom and I let out deep guttural cries. It felt like an out of body experience. The tears poured down our faces. Life stopped in that moment. My husband had to run our 23-month-old son upstairs so he wouldn’t witness our despair. Our boys are only eight weeks apart. Our boys were supposed to have a play date two days later. But now, sweet Lukas was getting chemo in the hospital instead.

That’s how quickly it happened. That’s how fast my cousin’s life changed and flipped upside down. IMG_8932In the blink of a moment—she went from having two perfectly healthy sons—to finding out her baby was in for the fight of his life. A fight that would involve 3.5 years of chemotherapy. A fight that would involve countless nights in the hospital, setbacks, highs and lows with dire consequences, and having to watch your child take on the beast that is cancer.

I sat in the room while the oncologist walked through the treatment plan with my cousin, her husband and my aunt. She spoke gently and calmly. Her confidence was comforting. When she handed over a packet of stapled information with Lukas’s name on the top…followed by (“Acute Lymphoblastic Leukemia” below it) it felt like a punch to the gut. The words on the pages looked more like a college syllabus for an upcoming school year. Each day and treatment listed seemed overwhelming and scary. It’s going to be a long road ahead. A journey like no other. A battle that no child or parent should ever have to fight. A burden too cumbersome for anyone’s shoulders.

When Lukas received his chemo infusion that day, I looked at my cousin Nicole. IMG_8778She held her baby tightly, sobbing in silence as he looked around the room, unaware of the poison getting pumped through his veins. It killed me to see her go through this. It’s truly the unthinkable to watch someone you love hurt so badly as they take on the unknown.

Once you become a parent, these type of tragedies and health crises hit you in a whole different way. They remind us that no one is invincible, and you never know when the tide is going to change. As a parent, your child getting cancer is your worst nightmare. We all wish we could take it from him. Lukas is so young, so helpless. But he’s also so much more.

Lukas is resilient. Lukas is strong. Lukas is brave. Lukas is a fighter. This 25-pound boy, with so much life to live is not going to let cancer take him down. Lukas is going to show each and every one of us the power of prayer, the importance of faith and the strength we can find within ourselves even when we feel weak. He’s going to inspire and implore us to be better. IMG_8933He’s going to give life a whole new perspective. He’s going to thrive. Lukas is going to navigate these unknown waters and open our eyes to the beauty of a feel-good day.

And someday we’re all going to look back on these dark, difficult days and look at him and wonder how we got to this place. Someday Lukas will be free of cancer. Someday he’ll be a little boy who once had cancer. But for now, and always, he’s a warrior. Not only him, but his mom, dad and brother. The war paint is on. The first week of battle is almost over. And from this point forward they and we are all forever changed.