Well he did it. My baby brother ran the Chicago Marathon to spread awareness about Crohn’s disease. Even though I was there on the sidelines yesterday watching in amazement as he ran alongside 40,000 other brave marathoners, it still feels like a dream and is incredibly humbling. Not many people can say their sibling endured months of grueling training and hours of pushing their body to the limit… all to prove a point and make a difference.

In the days leading up to the race, I felt nervous FOR him. The day of the race—I was overcome with emotions (and not just because of the pregnancy hormones!) My brother—who has witnessed me battling a chronic illness for more than 11 years, who’s held my hand countless times while I laid in hospital beds and offered me comfort during difficult days… took those experiences and used them all for inspiration. While I ate breakfast with my family at a restaurant an hour before the race, I said a prayer for Greg and I was overwhelmed with emotion at the table—just thinking about all he was about to endure made my mind race and the tears flow.

I texted Greg: “Just said a prayer for you and it made me cry because I can’t believe you are doing this for me. Love you. You are going to be amazing.”

He responded: “I prayed and cried too. Anything for family.”

We were able to track him down at the 3 mile, 12 mile, 21 mile and 25 mile spots. Each time he passed us and slapped my hand was incredible. The hardest part was when he texted me “Hurting” at Mile Marker 15, it hurt my heart to know he was struggling on my behalf. At Mile Marker 25 we knew he was in a ton of pain. The crowds around the course were incredible—it’s amazing to see the support of the spectators and the thousands of focused runners on the race route about to cross the finish line. When we saw him that time—he came over to us, was crying and slapped my hand. I’ve never felt more proud of him in all my life. He ran the Chicago Marathon in 4 hours and 24 minutes.

The best part of all is that he did this out of the goodness of his heart. We never discussed the Chicago Marathon or him spreading awareness about Crohn’s. One day this past spring he nonchalantly told me what he was determined to do.

I think after he traveled to St. Louis last summer for my surgery, and saw firsthand how bad Crohn’s can get, he realized he wanted to do everything in his power to give hope to the 5 million people worldwide who battle this every day. Safe to say, Greg provided more than hope. He became a source of inspiration and motivation to everyone in the IBD community—and all our family and friends.

This incredible act of kindness has a ripple effect. During the race Greg’s wife was in line to use the bathroom—a girl came up and said “I hate to do this, but I have Crohn’s disease and really need to go.” Annie couldn’t believe it—she said, “My husband is actually running right now for Crohn’s disease! Please go right ahead!” While I stood at Mile Marker 25, I cheered on all the runners with “Team Challenge” shirts and the girl in front of me turned around and said, “I work for the Crohn’s and Colitis Foundation” in D.C.” I let her know I’m a fellow Crohnie. Like I’ve said in a previous article, I don’t believe in happenstance.

For those fighting chronic health conditions, for those reading this from their hospital beds, for those wondering when they’ll ever get relief—have faith there are people like my brother who are our biggest cheerleaders. You are not alone in your fight, some days will be rougher than others, but remind yourself that you’ve overcome every. single. flare. You have outdone your disease before and you’ll do it again—and the people in your support network will constantly lift up your spirits, surprise you, and remind you’re not in this alone.

A big THANK YOU to all the family members, friends and strangers who helped Greg raise nearly $2,700 dollars for the Crohn’s and Colitis Foundation! Greg, I’ll never forget what you did for me—and will use that amazing marathon experience as a source of strength for the rest of my life. Congratulations to all the runners who completed the race—especially those who focused their efforts on raising money and awareness for causes near and dear to their heart.

When you think about pregnancy—it’s truly a beautiful miracle and a bit of a mystery. It feels like a coming of age—your life and body transform to create and foster the growth of a living human being that you immediately fall in love with. Prior to experiencing this, I wasn’t able to grasp or realize how magical and worrisome this time in life can be. For those who battle autoimmune diseases and medical conditions, there’s an extra sense of wonder. With Crohn’s, whether you’re pregnant or not, the disease presents differently in every person. So when you’re pregnant, you can imagine how much more complicated that can feel for the patient and even the doctors.

Areas of wonder include: the long term side effects of medications, how past and current inflammation and disease activity will impact the pregnancy, and what happens if you go through a flare or need to deliver early, etc. One of the most common pregnancy issues in Crohn’s patients is preterm labor and low birth weight. My high risk OB told me that if a woman is going to flare during pregnancy it generally happens 25-30 weeks in, which is obviously a very critical time. Following delivery, some Crohn’s patients flare 2-4 months after the baby is born as your body gets reacclimated to life without the pregnancy hormones. In my mind—if either is going to happen… I’m praying it’s when the baby is already here so that I can endure the flare on my own and not have to worry about harming the baby in any way with IV medications.

When I was a few weeks into my pregnancy I came across a tweet from the Crohn’s and Colitis Foundation about a pregnancy study. I clicked the link, checked out the study, and emailed “MotherToBaby” without hesitation. The study is observational and is conducted by the Organization of Teratology Information Specialists (OTIS) and coordinated by the University of California, San Diego. OTIS is a non-profit organization that is dedicated to learning about the safety and effects of medications used to treat diseases such as Crohn’s during pregnancy. MotherToBaby is considered the most trusted source of evidence-based information on the safety of medications and other exposures during pregnancy and while breastfeeding.

By participating in the long-term study, I have the opportunity to interact with expert staff who have already provided me with support during my pregnancy, while also playing a key role in helping researchers discover more about the safety of medication during pregnancy and in the future. During my first phone interview I was asked if I would want to be tracked for one year or five. I chose five years because I feel that will provide a clearer picture of how my baby boy responded to being in utero while I gave myself Humira injections and took four Lialda pills a day. It gives me such peace of mind to know that he will be looked at once a year by a doctor (free of charge) until he’s in kindergarten to see if there are any areas of concern.

Enrolling in the study is super easy—it involves phone interviews during pregnancy and after birth, as well as the release of medical records from the pregnancy and the pediatrician. The doctors who participate in the study do home visits when your baby arrives, so you don’t even need to leave your house to receive medical attention.

If I can help provide insight into how pregnancy and medication coincide with one another, sharing my story is more than worth it. It’s comforting to know I am one of 100,000 women right now who participate in this study to shed light on birth defect prevention regarding disease, medications, and vaccines during pregnancy.

Interested in learning more? Call 1-877-311-8972 or email MotherToBaby.ucsd.edu to get involved.

For the first time in more than 11 years, I have a lot more than Crohn’s going on in my abdomen… I’M PREGNANT!! It’s amazing to finally be able to share these exciting words with you and offer insight into what it’s like to carry a child while living with a chronic autoimmune disease. I just surpassed the 13 week mark on Saturday and we found out Baby Hayden is a BOY! He is due on April Fools’ day.

Prior to getting married in June, I underwent a colonoscopy in May to see if I was in remission (with family planning in mind). While Crohn’s presents differently in every patient—the general rule of thumb for prospective mothers is to conceive only when you are in a remission state. If you’re flaring or have active disease present—oftentimes that can carry on throughout the pregnancy. For many—pregnancy hormones slow digestion and in turn the disease is silenced. This makes me want a family bigger than the Brady Bunch! (just kidding, Bobby!) Lucky for me, three weeks before the wedding—I was told I was in remission. I attribute my remission to the removal of 18 inches of diseased intestine in August 2015 and making the decision to go back on medication once I was healed, even though I dragged my feet at first.

While the news of being in remission was exciting to hear—I always take the results with a grain of salt. The year before I was told the same thing… and ended up hospitalized with a bowel obstruction 10 days later. All I could hope and pray for was to stay in remission long enough so that we could try to start our family after our wedding.

I described this time period as “racing my remission.” I was fearful –wondering whether we would get pregnant before the disease would strike again. On my wedding day (June 4) I was symptom free; despite all the hustle and bustle of the day…talk about a Crohn’s miracle!! Then, we were blessed to find out at the end of July that we had a baby on the way.

To say we feel elated and over the moon is an understatement, as any couple wanting a child feels when they find out they are going to be parents. It’s truly hard to put into words how fortunate we feel. Of course we won’t feel a true sense of relief until he is safe in our arms. I’ve wanted to be a mom for as long as I can remember, and I’ve always worried about whether I would out-do my disease in time to and beat it to the punch when the time was right for me.

It was such an incredible sense of relief to see the positive sign on the pregnancy test and have it all confirmed at the OB a few weeks later. While there’s no telling if I’ll flare while pregnant (a constant fear that looms over me), so far things are going great. Since I’ve been pregnant there have only been six days where I felt symptoms of Crohn’s… it’s incredible not to feel the symptoms that have been a part of my life for so long. I can only hope and pray this continues until I deliver. I traded Crohn’s issues for pregnancy symptoms, but I consider those more than worth it—especially knowing they are temporary!

As a Crohn’s disease patient and mom-to-be, you’re considered high risk. I try to look at the bright side of it all—we have three specialists watching over baby and me…and we get to see our little one through more ultrasounds!

Over the years I’ve come to realize how little information there is about women who’ve been pregnant with Crohn’s disease… or any autoimmune disease for that matter. I started this blog with the hope that I’d be able to share this journey with the public and make a difference. (We found out the news of the baby two days after the blog went live, so you can imagine how anxious I’ve been to share this update!!) Through this journey of pregnancy and motherhood, I am going to offer a voice for the women out there who are going through the very same thing and have the very same questions. Whether it’s to stay on medication, deciding to breastfeed, if you should plan a vaginal or c-section delivery, etc…the list goes on and on, there is SO much to consider.

While I don’t have all the answers of course, I will explain to you what I’m learning along the way and the reasons for my decisions. The blog won’t focus solely on this—but, I feel my experience can help pave the way for those in my shoes. In the meantime, if you have questions or topics you want me to cover—don’t hesitate sending an email to lightscameracrohns@gmail.com.

Finding a health care provider who is supportive, compassionate and understanding may sound like a no-brainer, but in actuality it may be one of the most difficult parts of your disease journey. I’ve encountered gastroenterologists on both sides of the spectrum… and boy does it make a difference. I’m  sure many of you have met doctors along the way whose bedside manner and thought process leaves much to be desired.

Ideally, you’re able to secure that patient/doctor relationship before a flare up or a hospitalization, but that’s not always possible… or the case.

Tips for finding “the one”:

• Feel empowered by your healthcare choice: Be comfortable with your treatment plan and the way your disease process is handled. No one has a gun to your head making your take a certain medication or see a certain specialist. It’s your body. It’s your choice. Do what’s best for you. Follow your intuition.
• Speak up and voice your concerns: Team up with a doctor who values your input and experiences and doesn’t group you with other patients or belittle what you know. See a doctor who makes you feel like your case matters and is unique, because it is and deserves that type of attention.
• Ask yourself this question: During a hospitalization, do you want your current doctor at your bedside?: If your doctor brings on Crohn’s symptoms because he/she makes you nervous or uneasy…that’s an easy answer and it’s time to “shop” around. The last thing you want is to feel even more out of control of your care while lying lifeless in a hospital bed. Choose a doctor who you trust in your heart is doing all they can to make you whole again.
• Be your own advocate: Sometimes you need to be assertive and push back. Educate yourself about treatments and why certain tests or medications may or may not be necessary. If you’re feeling great and don’t see the need for that colonoscopy at the moment, do what you are comfortable with and re-visit it in a few months. (I’ve done that—no issues). Nobody knows your body better than you—trust in that.
• Find a doctor who’s accessible: Many doctors understand that symptoms don’t strike from 9-5 p.m.; I’ve encountered a GI doctor and a surgeon (not affiliated) who provided their personal cell phone numbers to me. Build that rapport and confidence with your doctor. Just having that number in your wallet can bring all kinds of comfort. Leading up to my surgery in August 2015 it was amazing to talk to my GI from my hometown who’s been by my side since I was diagnosed in 2005. He called me while he was driving—his words eased my fears and confirmed I was making the right choice. Now THAT’s a doctor who cares. Wish I could clone him!
• Ask around your IBD network: Just like with many things in life—talk with friends, family and colleagues and see if they can recommend a doctor they love. Social media is a great outlet to do so. A doctor’s reputation is usually pretty spot on.

Always remember your doctor is a key player in the game—and the balls in your court to choose one who suits your needs. I’ve dealt with doctors who left me sobbing in the parking lot, feeling useless… to others who have lifted my spirits to new heights. You deal with enough as it is already, you didn’t choose your chronic illness, but you can choose who you want on the front lines to take it on with you.

One of the scariest and most daunting parts of Crohn’s disease or any chronic illness for that matter is the wonder and curiosity of when it’s going to strike next. Even if it’s been months or years since a hospitalization or flare, not a day goes by that you don’t wonder…when is the next time going to be? Each time I’ve been hospitalized in the past 11 years I have felt completely fine in the morning—and then something changes. A few hospitalizations really stick out in my mind because of how abruptly my day and life changed.

The first was in May 2009. I anchored the morning news on Wake Up Wisconsin and felt great, had a first date planned in the evening and was getting ready for it. What seemed like a happy, carefree day—turned into a nightmare in a matter of moments. The crushing, debilitating stomach pains started out of nowhere, I was vomiting from the pain…and before I knew it, hospitalized. The guy I was supposed to go on a date with laughed and thought it was all an excuse not to see him.

Another instance that sticks out in my mind—I was training for my second half marathon in February 2014, anchored the morning news in Springfield, ran 9 miles and was heading to St. Louis after my run to see my boyfriend (now husband). While I was driving to St. Louis those all too familiar pains began…later that night I was hospitalized with a bowel obstruction.

That’s how quickly it happens. The disease doesn’t care if you have plans. The disease is a mysterious beast that chooses to rear its ugly head without any notice. But, the magic happens when you find a way to manage stress so it doesn’t lead you to a vicious cycle of flare ups. This can be easier said than done, but there are ways to manage the day-to-day and be mindful of your thought process and your body.

Many time people with Crohn’s disease and Ulcerative Colitis have what’s called “psychophysical vulnerability.” Meaning that stress, emotional health and poor coping strategies can impact how one’s disease progresses and hinder quality of life. While it’s imperative to follow a diet, exercise and treatment plan that you respond best to, it’s also important to focus on the emotional and cognitive impact the illness has on you.

• Breathe deeply: Breathing out for five seconds and in for five seconds helps to slow you down and create a sense of calm. Do this as many times as you need to feel relaxed. Be mindful of your breath as it enters and exits through your nose.
• Focus on the now and not the what if: There’s no sense in worrying about your next hospital stay—have confidence in the fact that with each flare up and rough day that has happened through your disease process there has been a beginning and an end. Deal with it when it happens—don’t waste time living in a state of fear. You’ve beat it before and you’ll beat it again.
• Confide in a family member or friend: Share your struggles and worries, don’t keep them bottled up in side. If you don’t communicate with your support network they won’t know you need help. Always share your feelings, don’t hesitate or feel like you need to deal with this alone.

Overall, place emphasis on the “relaxation response”—a physiologic state of deep rest induced by mediation, yoga and prayer—in doing so you not only alleviate stress and anxiety, but also help to keep the disease process in check.

Finding the mind-body techniques that help you fight the fatigue, stress and chronic pain of Crohn’s diseases can be the best recipe for getting the symptom relief you’re looking for. If you’re mentally strong, you’ll be much better equipped to endure the days that hurt you on a physical level.

Back in the summer of 2008, during a hospitalization, I was told we needed to “break out the big guns.” The medication I had taken for three years to calm my Crohn’s disease was doing as much for me as a Flintstone vitamin. As I laid in the hospital bed and heard the game plan I was incredibly apprehensive, petrified really…at the thought of having to give myself a painful injection for the rest of my life. There was so much unknown—How would it feel? Did I have the strength to actually inflict pain on myself? What about the side effects?

At that time I was given the choice to give myself a Humira injection every two weeks from the comfort of my home or receive Remicade treatments in the hospital every 6-8 weeks through an IV for several hours. During this time I was a morning news anchor in Wisconsin, nobody knew I battled Crohn’s. I wanted to keep my disease a secret as much as I could, so I chose Humira. Not only for the privacy, but also because I mentally didn’t want to have to go to a doctor’s office or hospital and be hooked up to medicine. To me—that would make me feel like a sicker person. I know multiple people on Remicade who love it, if it works for you—great!

For those who are on Humira—you know the beginning is the worst. The loading dose is physically, emotionally and mentally taxing. In order to get the medicine working you need to do four shots, instead of “just” one. Back in July 2008, I went to the doctor’s office with my Mom to do the first four shots and let me tell you, it’s a milestone in my disease journey I will always remember. The nurse showed me how to administer the shot on a practice squeeze ball, but made me give them all to myself in my thighs. Sitting there with a large epi-pen like syringe in my shaking hand felt so foreign. I shuddered at the thought of what it would feel like when I mustered up enough strength to push the plum-red button and feel the medicine enter my body. You do one—and quickly feel the stab of the needle and the liquid burn through your leg. That’s one. Then you have to prepare to do three more back-to-back-to back. When that was over, I remember walking out of the doctor’s office and stopping before we reached the reception desk. My Mom and I hugged and froze in the moment. That embrace spoke to me more than words could at the time. She felt for me and was and is my biggest cheerleader. It was a feeling of relief, pride and the knowingness that this was just the beginning.

Two weeks later you do two shots—a huge improvement from having to do four, but still no picnic. Unfortunately for me, the loading dose made me feel incredibly weak and dizzy. I was miserable. I couldn’t make it up 13 stairs. Work was a struggle and my energy level felt like I was on “empty” every single day. Each person responds differently to that initial loading dose—you have to tell yourself, your body is absorbing and getting accustomed to 4x a foreign medication. It’s temporary pain for long term gain.

Then, from that point forward, I was down to one shot, every other week. The first few months I would dread my Monday “shot days”…and would cry as I gave myself them alone in my apartment. In time, I grew so much more comfortable and knew the medication was making me feel better and worth the short term pain. Twenty seconds of pain for symptoms to subside and to stay off other medications—pretty great trade if you ask me! Luckily, after the loading doses my body grew accustomed and to this day I feel no side effects or symptoms when a shot is due or after I take one, something that can’t always be said about Remicade.

The past few years Humira has just became part of my life and routine—I give myself the shot every other Monday while I’m watching TV, or running out the door to work or to meet friends for dinner.  Anyone who undergoes surgery is taken off Humira for the time being, so unfortunately I had to do that loading dose again last November. Luckily, this time around I felt a lot braver and didn’t experience any sickness as a result of all the shots.

Here are some tips for all my fellow Humira injectors and for their family members and friends:

1. Humira is kept in the fridge, take the shot out and set a timer for one hour. I used to do 30 minutes and then a nurse told me I could do an hour, and it’s made a difference. Warming up the medication decreases discomfort.
2. Five minutes before doing the shot, wash your hands and wipe your thigh or stomach with an alcohol swab. Let it dry and then hold an ice packet wrapped in a paper towel over the spot you are going to inject. Each time you do the shot, switch legs or the area on your stomach. I write R or L in my calendar because it’s hard to remember!
3. Once you’ve held the ice pack on the spot, take it off and use your forearm to lean on the area for a few seconds…this warms up your skin a bit.
4. Look at the medicine in the shot and tilt the pen up and down to see that it’s moving in there. There’s a small oval window you can look at it to see the clear medication.
5. Take the plum-red top and gray bottom off the shot—they are labeled 1 and 2. At this point be ready to inject—any sudden movement will release the medication.
6. Sit straight up with good posture and stare at a focal point on the wall, on the TV or if you’re like me stare at a photo that inspires you. I either look at a picture of my cousin Bill who’s had the two heart transplants and a kidney transplant, at a photo of my Aunt Judy who passed away from ALS, or one of my husband and I from a happy time. Look at photos of people who have shown you what it means to be strong.
7. Grab the skin on your thigh or stomach and pull up and back—you want it taught, but not too much where the medication will not go in properly and spill out.
8. Hold the shot straight up—90 degree angle from your skin.
9. Stare at that picture and go to your happy place.
10. Take a deep breath, press the button like a champ, and count out loud…“one one thousand, two one thousand, three one thousand…until 10.” When I’ve needed “extra strength” I’ll say the person’s name as my count down… “Bill, Bill, Bill…”
11. Lift up the shot—hopefully you won’t see any medication (liquid). Depending on where the injection goes you may bruise immediately or bleed, but in most cases you won’t. If anything your skin may be raised a bit, but that’s a good sign! It means the medication is getting absorbed.
12. When you look at the oval window of the shot it will be highlighter yellow—meaning the medication has been dispensed. Put the shot in a sharps container to properly dispose of it.
13. I always text my Mom or tell my husband “Perfect shot!”

While I don’t enjoy injecting myself or getting shots—I do enjoy the benefits Humira has provided me the past eight years. This drug has done a magnificent job of silencing my symptoms and allowing me to have a great quality of life. It’s nice not to need to take 22 pills. It’s comforting to know that when I do get hospitalized doctors have told me my stays are shorter because of Humira. Many people shudder at the side effects—and think…well, there’s an increased risk of Tuberculosis,  Lymphoma, this suppresses your immune system, etc…as my Mom, who’s a nurse, always tells me—look at the side effects of Tylenol and you would never take it. I can tell you since 2008 I’ve never noticed that I get more colds, viruses, etc. I haven’t noticed any difference in my immune system and my blood work (which is tracked quite often) never shows any signs of issues.

How about the cost? There’s a great program called Humira Complete which allows you to get the shots for as little as $5 a month! Click here for more details. If you need assistance for any reason, an on-call registered nurse is also available 24/7 to answer any questions or concerns by calling 1-800-4HUMIRA (1-800-448-6472). The nurse ambassadors are fantastic. If you want a nurse to come to your home and help you or teach you, they stand ready and willing.

It’s up to each person and each patient—but my advice is that you need to weigh the risks versus the benefits and look at what kind of life you want to lead.

Photo taken before my loading dose in November 2015. 

The definition of happenstance is “something that happens by chance.” Whether it’s the diagnosis of a disease like Crohn’s or an encounter that leaves a lasting impression, I’m of the belief that each discovery, each interaction, and each “coincidence” is actually meant to occur. It’s those very happenstance moments that can bring us the greatest clarity and change the destiny of our lives.

The happenstance mentality is not something I can take credit for. My Godmother or “Nouna” as us Greeks say it, has been a shining light in my life since she put the oil on me 33 years ago. She’s endured more heartache than many—as her son Bill was born with a hypoplastic left ventricle (basically half a heart). My cousin Bill is someone who comes up quite a bit in my writing and in my thoughts because he’s a pillar of inspiration for me—much like his Mom. Throughout Bill’s miraculous transplant journey these last 27 years and throughout my 11 year battle with Crohn’s…each hospital stay, each flare up, setback and surgery—she always says… “I don’t believe in happenstance.” Her words are so empowering to me.

They make me feel like I’m meant to battle the adversities before me and that the current pain and struggle is just a small fragment of what my life is all about. Those words mean I was destined to have Crohn’s—this was meant to be a part of me because there is a purpose. In my opinion—my love for writing and helping others enables me to be an advocate for those who suffer in silence. This mentality is never a “why me”… but more a “why not me.”

As my Nouna says, “As simple as this may sound, the “happenstance mentality,” is like a very high and unspoken faith. It’s believing the circumstance and the outcome are totally out of my hands. That I just have to believe in the higher powers, that they will intervene and make everything work out. I have never ever asked God “why?”  I felt if I did, I would be looking ungrateful to God for what He has given us. Instead of the “why me” perception, I prefer to live by: “God gives his toughest lessons to his greatest teachers.”

Who are your greatest teachers? When I think of some of my greatest teachers in life it’s those like my Nouna who choose to look at life’s obstacles as only hurdles and setbacks. When you think back to experiences that challenged you—hindsight is 20/20 for a reason. No matter what you are dealing with or what you are battling take a moment to stop and think—every relationship and friendship started with a stranger, each person with a medical condition has heard the same words… “You have….”… and each new possibility and encounter is a new opportunity.

We all go through different seasons in our life—embrace the timing. What may seem like your greatest hardship in the moment, may pleasantly surprise you down the road when you come to the realization that the thing that you may detest the most (ie. Crohn’s disease), an illness that forces you to let go of the reins as it takes control of you at any moment…. also has the ability to serve as a lifelong blessing because it forces you to look in the mirror and be stronger. It forces you to push through when your hurt the most and it forces you to truly grasp how fragile, amazing and often taken for granted a good day of health is.

I hope the happenstance mentality serves as a source of strength for you and a reminder of how our lives are all part of a bigger plan.

This week is my birthday. Turning 33 isn’t all that exciting, but my baby brother’s herculean efforts to run the Chicago Marathon this October for Crohn’s disease are. A few months back, Greg approached me and expressed his interest to make a difference and educate the public about Crohn’s disease.

On Greg’s fundraising page he writes, “Through the years, I’ve aspired to complete in the Chicago Marathon; I just didn’t have the guts to participate until my sister had to have 18 inches of hers removed. Natalie’s strength, courage and determination to take on each day and not let her disease hold her down inspires me to lace up my running shoes and gear up for the 2016 Chicago Marathon. I am running to raise money and awareness for the Crohn’s and Colitis Foundation (CCFA). I am running so my sister can stand on the sideline for once and be the one who gets to offer strength to me.”

Week after week, Greg sends me photos and texts about his training. With each mile that is added on and each enthusiastic photo that is shared, I’m overwhelmed with a sense of pride. Pride because I know firsthand how difficult it is to train for a race. Pride because my little brother is going to extreme efforts to make a point and to educate those around him about Crohn’s and Ulcerative Colitis. Pride because when I watch him run October 9, I will know he’s endured blood, sweat and tears for the 1.6 million IBD patients in the United States.

“When the going gets tough, I think of all the people who live in a state of unknown and experience pain from Crohn’s, says Greg. “Marathon training isn’t just putting in miles, it also involves a lot of mental and emotional strength. We all run for our own reasons and often time, these reasons are close to our hearts.”

Only .5 percent of the U.S. population has ever participated in a marathon. A marathon is much more than 26.2 miles on race day; it’s the hundreds of miles that are logged beforehand. It takes more than being physically in shape, it takes a great deal of time, energy and determination.

Greg tells me, “I hope this makes you feel proud. I hope to educate the uneducated who don’t know that Crohn’s disease is a chronic illness, with no cure that causes tremendous pain. Although I cannot take the pain away, I hope that the extra awareness gives you a sense of hope that a cure will be found; that you do not feel alone in this battle.”

Sitting here now envisioning Greg crossing the finish line in Grant Park brings tears to my eyes. I am so excited for that moment and so appreciative that he’s going to this effort to make a difference.

Greg—as you train these last seven weeks know that I admire your compassionate heart and genuine willingness to make a difference. Watching you run and knowing all the effort you’ve put in is something I will remember for the rest of my life. This speaks volumes about your amazing character and how you always put family first. You are a true warrior for the IBD cause, and I can speak for the IBD community and say we are all eternally grateful for advocates like you.

So…what more could a birthday girl ask for?

How about this—my one birthday wish is that you click here and visit Greg’s fundraising page and donate to support the cause. The deadline to donate is Sunday, September 18. Every dollar makes a difference. Let’s join my brother in taking steps to find a cure for Crohn’s Disease and Ulcerative Colitis.

When you think of a sibling so many thoughts and emotions come to mind, from childhood memories to knowing that no matter what—you have those special people to count on, as your unconditional best friends and lifelong partners in crime.

I have two brothers, I’m the oldest but I learned long ago that I look up to both of them…and not just because they are way taller than me. This week is my brother Peter’s birthday. We’re Irish Twins, same age for a week. Peter spoke at my wedding earlier this summer and did a remarkable job. He’s someone who thinks before he speaks and is careful with his words. He’s a deep thinker and an incredibly compassionate soul. I always kid him about being intellectual, but in all actuality I admire that about him. My respect for him continues to grow as we get older.

During his speech at my wedding he recounted his memories of a road trip he took from Chicago down to St. Louis in August 2015 so that he could be by my side as I prepped for major abdominal surgery.

As he drove down I-55 south, he passed through Springfield, Illinois and immediately he thought of that city as a place where I followed my dream and passion of broadcast journalism at WICS-TV. Then he got to thinking about all the miles I had traveled to follow my heart…Minnesota, Wisconsin, Chicago, Springfield and now St. Louis.

Here’s a snippet of Peter’s wonderful speech as he reflected on last summer’s surgery, “…Natalie has an amazing network of love. She has it because she wants it and because she deserves it.

When I arrived at the hospital and opened the door to her room, she cried when she saw me. Much like her other visitors, I spent a few days in that hospital beside her, observing, listening, and praying. And in these quiet moments I witnessed the beautiful, sacred love between Natalie and Bobby. Oh, how she longed for him, and how delicately he combed her hair, and how patient they were for each other. And I’ll never forget when they parted before the surgery and then reunited after; these were glorious scenes to witness.

I drove home from St. Louis with peace, believing that things were going to be fine and knowing that this unconditional love of theirs would be celebrated with the network of love that means so much to them. I’m inspired by their story and how it grows. I suggest that we all be mindful of our journeys and remember that distance should lead to within and not without…”

This network of love Peter speaks of rings true for anyone battling a chronic illness. Having a support system to hold you up when you don’t have the strength to get out of bed is invaluable.

Everyone deserves support—but it’s a balance—being there in the good times and the bad, because you want to. Whether it’s a simple text message, flowers, or visit—it’s always remembered. At the time, the thought may cross your mind… “I wonder how she’s doing?”…”I’m going to say a prayer that her surgery goes well.”… “I’d like to visit and see her.”… we all have busy lives, but when those thoughts cross your mind try your best not to ignore them and follow through.

What may seem like a short visit or an “annoying” text is not—it shows you care. If you think of reaching out and are praying for feel good days for a loved one or a friend but don’t articulate it, your family member or friend will never know and honestly just think you’re too busy or don’t really care.

Your loved one who is battling an illness is not screaming out for attention or wanting sympathy but it’s nice to know your friends and family have your back and are interested in your well-being. When you’re alone in a hospital room or struggling in pain on the couch sidelined from a friend’s get together …it’s easy to feel alone. In those moments when people who claim to be your closest confidants, loved ones and friends don’t reach out—it makes you start to question just how much you truly mean to that person.

Since I was diagnosed with Crohn’s disease in 2005 there have been countless hospital stays, rough days and ER visits. If you ask me—I could tell you each person who has ever visited me at home or in the hospital, each person who has sent a care package, flowers or a card and each person who has reached out. These are moments you always remember.

My brother Peter captured it so perfectly—it’s a network of love—knowing this beast of an illness isn’t something I need to fight on my own takes away so much of the burden. So the next time someone is going through a difficult time, no matter what the issue—when you think of someone—don’t hesitate, be there—whatever way you can.

Peter turns 32 this Wednesday. Knowing I have someone like him in my network of love and as a family member, someone who always puts others first, makes me feel like anything is possible. Take this time to think of your network of love, and always remember to appreciate those who lift you up when the going gets tough.

Check out Peter’s blog.

While the majority of friends and family are amazing cheerleaders, supporters and compassionate caretakers…there are always a few who manage to make an insensitive comment or question the severity of your disease along the way. Most of the time it’s not malicious, but more innocent ignorance…at least I like to tell myself that.

Over the last 11 years I’ve heard it all “You don’t look sick?!” “You’re sick, again?” “Don’t worry about the effects of the steroids, you have puffy checks anyways!”, “You’re a sickly, frail girl”…but following my surgery there were a few comments and conversations that made it back to me that left me incredibly disheartened. Comments that I may be able to forgive, but will never forget. One of them questioning “Why is she getting so much attention? I had a C-section. There wasn’t all this talk when I was sick.”

Ok. Let’s get one thing straight. A C-section may have a similar scar, but there is absolutely NO COMPARISON to the procedure. With a C-Section part of your body is not cut out of you. You come out of the procedure receiving a baby, most likely one of the happiest moments of your lifetime.  Sure you need time to recuperate from being cut into, but you have the joy of staring at your bundle of joy and knowing your pain was so that little life could enter this world.

With the surgery I underwent, 18 inches of intestine were removed. My ileocecal valve as taken.  What’s that valve do? It helps you “hold it” whenever you have to go to the bathroom. My appendix was removed (who would have thought?!) and the surgeon explained that all of my intestines had been pushed down into my hip area and had to be “put back into place.” It’s not as simple as cutting out the intestine and connecting it to the colon and being good as new or cured. For the next year…and truly for the rest of your life, your digestion is different. Your internal organs are forever changed and that carries over into how you feel on a daily basis. According to the Crohn’s and Colitis Foundation of America (CCFA), an estimated two-thirds to three quarters of people with Crohn’s will have one or more operations in their lifetime. About 20 percent of patients show a recurrence after two years, 30 percent after three years, and up to 80 percent by 20 years.

I’m going to get real graphic and personal here because it needs to be said in order to make my point clear. I’m sure fellow Crohnie’s have experienced much of the same. While I was recuperating and working from home half days before I went back to work last summer, I had an accident. No, I did not fall. As a 32 year old woman, home alone, all by myself, I wasn’t able to cross the tiny hallway to the bathroom to “make it” on time. Imagine that. How would you feel if you knew your body wasn’t functioning correctly? Completely dealing with unchartered territory, not knowing what is going to be thrown your way? Never knowing when the next time THAT could happen again is. What if it’s in public? What if it’s in front of my friends and family? I wasn’t able to drive home for months to Chicago or make long road trips because I was fearful of having enough time to pull off the road. For a few weeks, I even carried a pair of underwear in my purse…just in case.

Let that sink in. And before you judge or question someone take into consideration that they may be battling an invisible disease that is a part of who they are… every. single. day. of their life. Until you’ve been a patient or been given the diagnosis, consider yourself lucky that you get to experience the ignorant bliss of being unable to fathom the pain and constant worry.

While ill-intentioned words leave invisible scars and bring us down… try to challenge yourself and recognize the importance of keeping your head up and being an advocate by compassionately educating those around you.

In the news business you can receive 100 compliments about how great your story was and how awesome you are to watch, but then you’ll receive one comment about how your haircut is awful or that you read too fast…and that rewarding, positive feeling goes out the window instantly. Much is the same when people make comments questioning the way you handle your disease.

Ultimately, when you look in the mirror you know what you’ve experienced and you’ve fought the battles. Trust in your family members, friends, and strangers who genuinely rally around you and care about your well-being. THAT is where your focus needs to lie. Positive attracts positive, drown out the noise.