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

How motherhood has helped me discover I’m so much more than my IBD

We walked out of the automatic rotating doors of the hospital and the cold air hit my face. I looked up to the sky in thanks, to show my gratitude and to take in the moment. We had our baby girl in tow, our Sophia Shea. img_5915It was a brisk January morning. Tears filled my eyes as I was overcome with emotion. Our rainbow baby is here, safe and sound. Another pregnancy behind me, a pregnancy that silenced my Crohn’s disease and provided sweet reprieve from my chronic illness. It was time to take Sophia home and start our life as a family of four.

When your health is taken from you and when you receive a diagnosis of inflammatory bowel disease, life prior to illness often feels like a distant memory. There’s something so sacred and so special about bringing a healthy life into this world, despite your own shortcomings.

My Sophia, much like my sweet son Reid, are my inspiration and motivation to push through the difficult days and find strength and perspective within myself. The creation of their lives has renewed my faith in my own body. img_5886Each time I have a procedure or deal with painful symptoms, I see their faces, I say their names in my head, and it brings me a sense of calm. My goal when Reid was born, was to stay out of the hospital until he could walk, luckily that’s been the case. He’ll be two in March. Now, I have that same goal following the arrival of my daughter.

Pregnancy and child birth bring about such an amazing, miraculous transformation. You see life created right before your eyes. You experience a shift in your own identity. There’s nothing like it. There are no words to capture the emotions and the overwhelming love you feel for your children.

Finding the balance: Motherhood and IBD

17-untitled-9166Motherhood and IBD can be a difficult and challenging balance. Some days the fatigue and symptoms are so debilitating you feel like you’re falling short. At the same time, the days where you’re feeling well, remind you that you are so much more than your disease. Just because you have a chronic illness, doesn’t mean you are robbed of experiencing the beauty of life and what it feels like to have your very own family.

Women often reach out to me with questions regarding fertility, conceiving, pregnancy and what it’s like to take on parenting while battling IBD. There are so many unknowns. I know it can be daunting. img_5751It all starts with recognizing where you are in your patient journey and then determining when your symptoms and body are in the best shape to get pregnant. While everyone’s disease experience is different—the worries, concerns and fears associated with parenting and chronic illness are often the same. Always know you are never alone. Communicating these feelings with those around you, makes all the difference. Lean on our patient community and all those who’ve lived your reality.

I treated my pregnancies the same. I had colonoscopies prior to trying, to ensure I did not have active disease. Once I received that green light, I discussed my game plan with my OB, high risk OB and my GI and had monthly and sometimes weekly appointments. Each time—I stayed on my medication and vitamins from start to finish, which includes the biologic drug, Humira. I had scheduled c-sections for both. It’s all about finding what works for you, what brings you comfort as you embark on this journey and being confident in your decisions. It’s your body. It’s your baby.

29-untitled-9292When Sophia Shea entered the world January 14, 2019, our family received a wonderful gift. Between our son Reid and our baby girl, we could not be more blessed. My chronic illness has given me such an appreciation for health and for life in general. With the pregnancies behind me, I often reflect on where I started back at age 21 in 2005. At that time, in my eyes, I was Natalie and I had Crohn’s disease. There was no telling what my future would hold. Now, nearly 14 years later, at age 35, I’m so much more. I’m a mom to two under two. I’m a wife. I’m a daughter. I’m a sister. I’m an aunt. I’m a friend. And I also have Crohn’s.

 

How Hurricane Maria changed the path of my Crohn’s Disease: A Puerto Rican patient’s journey

I recently connected with a fellow IBD patient on Twitter named Jessica Pérez-Cámara. Aside from both of us battling Crohn’s disease and both of us taking Humira, we’re also both journalists. This week—Jessica shares an emotional piece about what it was like to take on inflammatory bowel disease, amidst a natural catastrophe, mid-flare. I’ll let her take it away.

Life with IBD is hard enough. IMG-5512Try having a flare during the worst natural disaster in the history of your country. It happened to me. I survived.

On September 20, 2017, Category 4 Hurricane Maria made landfall in Puerto Rico, causing a humanitarian crisis. Maria left nearly 95 percent of the island without communications, water, electricity and with limited medical access.

Many of the 3.4 million U.S. citizens living on the island had restricted access to resources like food, fuel, among many other essential needs. No communication, no cell phones, no internet. Nothing. I am a journalist who, at the time of the storm, was working as a communications assistant in the local Government. My job was to share news to the public before and after the hurricane. My country ended up getting hit with two hurricanes, and my beloved grandmother passed away a few weeks earlier. She died the day before Hurricane Irma. It was all such a whirlwind, as the stress mounted, so did my flare. IMG-5510

I was diagnosed with Crohn’s Disease in August 2015, even though I’ve lived with IBD for more than three years, I’m still learning to navigate my illness. Upon my diagnosis, I was put on Asacol and Budesonide. I had been fearful of going on a biologic and did all I could to avoid them. But, deep down I knew the moment would one day come.

Nonstop work after Hurricane Maria

I worked nonstop for months on the initial hurricane recovery efforts. As I took on this responsibility, I was flaring badly. Many hospitals were not working full capacity, running on generators and with shortages of basic medications like IV bags.

I was feeling terrible, exhausted, the fatigue and diarrhea were worsening, but I kept working through the pain. I was putting my duty for my country before my health. I was working long hours and when I got home, it did not get any easier, because life was not the same. Basic things like food, water, fuel for the generators, gas for the cars and even having a good meal or taking a shower were more difficult. My body ached from head to toe. The food was scarce and what was available was mostly junk food, fried food and canned food.

IMG-5513One morning I decided to stop in my GI’s office. He had lost the A/C unit and the office was flooded during the storm. He ordered some labs, an emergency colonoscopy and a few days of rest. I was anxious, exhausted, scared. After the colonoscopy, I was prescribed prednisone for a month and then started Humira.

Humira without electricity at home

I began using Humira in November 2017. My initial four loading dose shots were at my parent’s house, because they had two power generators and could have the refrigerator running 24/7. They kept my Humira for the rest of the blackout for us, which lasted 114 days.

It’s now a year later. I am back to normalcy – to my new normal- of giving myself painful shots. I’m in the process of receiving the Citrate-free (pain free) Humira and I can hardly wait! Unfortunately, I deal with some side effects from the medication (general body aches and joint pain, fatigue and weakness). That being said, the minor side effects I deal with are manageable and worth it to keep my disease under control.

An important conversation about chronic illness

As a Crohn’s patient and as a Puerto Rican, IMG-5514I hope my experience sheds light on what it’s like for those in the chronic illness community as they endure the repercussions of natural disasters. It’s a critical conversation that needs to happen—preparedness for the IBD community in the face of weather disasters. How can employers, government and society step up to the plate?

One year ago, I began walking the path of the Hurricane to the path of remission. I look forward with a sense of hope for the future both as a person and as a patient.