30 Days of PH: What PH Has Taught Me

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by Colleen Steele |

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Day 28 of 30 Days of PH⁣
Topic: What PH Has Taught Me

This is Jacque’s Story @jacque.wilkinson

Even with all the negative that comes with this disease, it has taught me so many things. First, it taught me to slow down. I was an active single mom of 4 small children when I got diagnosed. And my life flipped upside down. It hasn’t been easy, and this is something I still struggle with today, but I know I have to listen to my body and take it easy, or I will definitely pay for it later. 

PH has taught me to ask for help. This is something that doesn’t come easy to me at all. It has always been me and my children against the world. Now, it’s me, my children, and my family against the world. PH has shown me who truly deserves a place in my life, and as much as that hurts sometimes, it’s worth it. My parents have literally turned their lives upside down to make sure my babies are taken care of, so I can take care of myself. 

It has taught me to fight, truly fight. After dealing with the diagnosis itself, several bouts of pneumonia, sepsis, and most recently COVID-19, I truly learned the meaning of strength. Even when I wanted to lie down, I knew I had to get up and fight every single day. Even when it’s hard – that’s when I have to fight the hardest. The meaning of the word “fight” changes when it’s your life you are fighting for. 

Along with all the bad PH has brought into my life, I have learned to find the positive in things as well. It has brought us closer as a family, and that I am thankful for. It has taught me to see the positive in everything, even when it’s hard. To not take things for granted, because it can change in the blink of an eye. I never dreamed I’d wake up sick one day, and never get better. 

Lastly, it has taught me that sometimes it’s okay not to be okay. It’s okay to feel sick, it’s okay to be sick. It’s absolutely nothing to be ashamed of. Having PH is like swimming upstream every minute you are awake. You rarely get relief. You rarely feel okay. Even when you do, most of the time it’s short-lived. But despite it all, we keep going, And that is the true meaning of strength. 

 

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About the Author

Colleen Steele avatar
Colleen Steele Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. She lived in Washington State for 20 years with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At 14, he received a heart and double-lung transplant. Colleen returned to New Jersey in 2023 after her loving husband of almost 28 years passed away. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forum moderator for Pulmonary Hypertension News in 2019. In her column, “Life as a Caregiver,” Colleen is open and honest about caring for her son, his PH experiences, and life post-transplant. Her ambition is to educate and inspire others facing similar challenges and encourage them, through her column, to share their journey. If you are a caregiver and would like to be interviewed, contact Colleen at [email protected].

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30 Days of PH, PH Awareness Month

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