‘Tis the season for reflecting on the past and looking forward to the future. I hope you’re enjoying time with family and friends and celebrating the feel good days. I’m looking forward to sharing advice, hope and inspiration in the years to come. Stay tuned for some exciting video projects that are in the works for 2017. In the meantime, here’s our holiday card and a photo from Christmas day. Thank you for all the love and support!
As author Augusten Burroughs so well put it, “When you have your health, you have everything. When you do not have your health, nothing else matters at all.”
For those of us who live with a chronic illness, whatever it may be, those words ring true. If you weren’t born with your condition, take a moment to reflect on what your life was like and the perspective you had prior to your diagnosis. Did you take your health for granted because you never knew anything else? Did you ever wonder what it would be like to battle an illness or fight for your life? Likely, the answer is no. It takes the experience and living with the disease or condition to truly grasp that feeling, that worry, and the strength that comes along with it.
I was lucky to have nearly 22 years of “perfect health” prior to my diagnosis of Crohn’s disease. I remember being baffled when my health took a turn for the worse—with no family history and my mom saying to doctors, “she’s never even had an ear infection?!” The nature of one’s health is something that can change in the blink of an eye. One day you wake up feeling invincible, not even thinking about your own personal health for a second …and the next day you could wake up with a disease you have turn to Google to for an understanding… and even how to pronounce it.
While this is the season of giving and objects are great—my call of action to you, is to celebrate your feel good days and not take them for granted, whether you have a medical condition or not. If you’re an overall healthy person, be grateful of that blessing and show compassion to those who may not be as fortunate as you. By showing gratitude for your own personal healt
h and understanding just how lucky you are—it will make you empathetic to those who may have a tough road ahead. As a person with Crohn’s, while yes, I have a chronic disease, I still try my best to consider myself “healthy.” I recognize that while many have it better, so many have it worse. I celebrate the fact that I haven’t been hospitalized for 16 months and that I’m 25 weeks pregnant with my first baby.
I thought it would be empowering for all of us to hear words of wisdom from those who have faced some of life’s toughest days with sheer strength. I turned to family members and friends—each with a different, inspiring story. Here’s what they have to say about the gift of health.
Bill Coon, two-time heart and one-time kidney recipient: “After everything I have been through, I have learned that one’s health is paramount. Like all people who have survived a traumatic experience, as life returns to normalcy, I find myself easily becoming distracted by the daily stresses of life. Occasionally, when I begin to fixate on something miniscule in the scheme of life, such as a delayed flight, I have a moment where I flash back to a time when I was too ill to stand up straight and my priorities seem to check themselves. I just pause, realize that as long as I have my health, I am fine and I carry on. Do your best to stay positive. Focus on the many beautiful things or people in your life, whom would not be in your life had you not been diagnosed. You may think there are none, but there are.”
Erin Gianaras, rheumatoid arthritis fighter and stroke survivor: “Ultimately, your health is the only thing that matters and becomes all you care about. Work, your social life, finances, relationships, etc., seems so unimportant. My advice is to surround yourself with a good support system, ask for help when you need it, allow yourself to feel your feelings (good and bad!), let yourself cry and pamper and reward yourself during difficult times. You don’t always need to feel “strong” or be “brave”…because in reality, you can’t be…but never stop searching for the positive.”
Katelyn Yosimoto, who after she tested positive for the BRCA gene, took steps to be proactive with her health, including undergoing a prophylactic double mastectomy in her 30’s to reduce her risk for breast cancer: “The past four years have taught me that I’m truly the best advocate for my own health. Trusting your gut, asking lots of questions, finding the right team to support you and feeling empowered to make smart decisions for yourself is so important. We all get busy – but that’s no excuse not to make annual visits to your doctor (even when you feel great), schedule mammograms and other tests, and raise a red flag when something doesn’t feel quite right.”
Sean Jaeger, diagnosed with Crohn’s in 2007 and has undergone four major surgeries: “My advice is, we have to manage our stress to the best of our abilities, I believe there’s a direct link between our mental state of mind and the physical condition of our body. Therefore it is crucial to maintain a positive outlook, while also taking care of your everyday needs: eating habits, sleep schedule, exercise schedule, time for something you enjoy personally, etc. All of these things make an impact on the way we feel.
Julia Nesselhauf, psoriasis battler and mother to 10 month old Jade Nesselhalf, who was born with a congenital heart defect: “Finding out at 20 weeks that my pregnancy was high risk and Jade had a congenital heart defect turned our world upside down. My daughter has lived almost 10 months with a very complicated congenital heart defect called Tetrology of Fallot. She was born weighing 2lbs 9oz. and has fought in the hospital every single day to be here with us. Jade experienced something in August that forever changed our lives. She had a cardiac arrest and received compressions for over an hour. She suffered severe brain damage and we nearly lost her. When I think of health now, I do not think of just the physical illnesses I think about the mental side of it. Through this process my mental health has been put through the test of time. I truly believe in order to be physically healthy you also have to be mentally healthy as well. I look at my daughter every day and know the reason why I wake up in the morning. We all have our battles in life and it’s how you choose to fight those battles that makes the difference. If I had one piece of advice to give to those who suffer from chronic illness, it would be to live for every moment! Surround yourself with people who care about you and start caring about yourself. YOU are the one that controls your happiness! Take control of your life! Don’t let chronic illnesses be a crutch, make what feels like a setback… the motivator to be better!”
Gina Carr, Type 1 diabetic: “Health doesn’t happen by accident. Someone can do all that they should and still be impacted by chronic conditions. It’s an obstacle that is given to the strong. To have a good day is weeks and months of work- checking my blood sugar, staying active, and watching what I eat. It’s shots, needles, frustration, and trial and error. To have a “good day” is the best feeling I’ve ever felt because it’s an accomplishment and team effort with my physicians, friends and family support and not achieved easily. I’m grateful for those good days.
Alisa DeMarco, Crohn’s fighter since 2005 and mother of four, “Good health is considered the “default” state of being…and you never think about it until it’s gone. Having health struggles makes you reevaluate the invisibility of it. It’s like having x-Ray vision. Try to live in the healthy moments, and look towards the next good cycle. Having a bad day or week? Know that this is only temporary, and the next good day is just around the corner. Chronic health struggles have ups and downs– enthusiastically ride the wave of feeling good!”
Time is ticking, less than two weeks until Christmas is here. If you’re scrambling trying to figure out what to get your loved one who battles a chronic condition (such as Crohn’s)—here are 10 gift ideas:
Happy giving! Know that the best gift you can give to someone who battles a chronic illness on a daily basis is constant support, patience, compassion and love through the ups and downs. THAT, my friends, is priceless. 
Music has a way of evoking emotions and making us feel. It’s tied to memories and moments in our lives. It speaks to us in ways daily conversations often aren’t able to. When you battle a chronic illness, music serves as a coping tool, an uplifting way to feel empowered and a
t peace.
I’ve been a big fan of music my whole life—and throughout my battle with Crohn’s disease these last 11-plus years there have been moments when it’s helped motivate me to be brave in the face of the unknown.
When I think back to my initial diagnosis and hospital stay in July 2005 I can vividly remember clutching my iPod and rocking back and forth on the toilet as I endured colonoscopy prep while experiencing a terrible flare up. For people who complain about going through the prep as a “healthy” person—imagine going through that experience while your intestines are inflamed and your body is already fighting against you while tethered to an IV pole with multiple medications running through you. I remember my frail, weak body draped in a hospital gown… shaking like a leaf on the toilet in pain and disbelief of my new reality. Music helped distract me and get me through in that moment. Days later when my potassium levels plummeted and I needed potassium in my IV, the pain was unbearable. I felt like fire was going through my veins. As I gripped my arms and tears were streaming down my face with family members looking on, I again had to put my headphones on to try and escape.
Music therapy—whether you just listen to songs that calm you or give you strength or seek professional help, is known to have a dramatic effect at optimizing all major systems of the body, because it counteracts our stress responses so well. I’ve read that music therapy helps cancer patients deal with nausea and vomiting. It’s that powerful. When in pain, music even has the ability to ease the intensity of what you are feeling. While no one knows all the ways music can benefit the body, studies have shown that music can affect brain waves, brain circulation, and stress hormones. Some songs may help you calm down when you’re feeling anxious, others may be for celebratory moments, while others help put everything in perspective and ground you.
Here are some of my fav’s…
Comeback Kid—The Band Perry
Scars to your beautiful—Alessia Cara
Fight Song—Rachel Platten
This Is Why I Need You—Jesse Ruben
Keep Breathing—Ingrid Michaelson
I Lived—One Republic
Resolution—Jack’s Mannequin
Around the World—Kings of Leon
Collide—Howie Day
Stacks—Bon Iver
Dog Days are Over—Florence + The Machine
Falling Faster-Andrew Ripp
Believe—Mumford & Sons
Sweetest Devotion—Adele
H.O.L.Y—Florida Georgia Line (my song for my baby boy, due April 1!)
I’d love to hear what songs speak to you as you deal with the unknown events life throws your way. It’s always nice to have an arsenal of songs ready to go. My all-time favorite go-to when I’m in the hospital is the song “Swim” by Jack’s Mannequin. No matter how many years go by, when I’m enduring a flare and hear this song I can never fight back the tears. The words not only make me feel like I can take on anything, but also remind me of my cousin Bill’s courageous wait for a heart and kidney transplant in 2009. I remind myself if he did it, I certainly can. Bill’s nurses would write on his dry erase board “keep swimming” as he waited for the gift of life. The song has been a source of strength for our family ever since. Whenever anyone is going through a difficult time—I always share those two words, because all we all can do is “keep swimming.”
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