30 Days of PH: Growing Up With PH - Pulmonary Hypertension News
30 Days of PH: Growing Up With PH - Pulmonary Hypertension News |
| 30 Days of PH: Growing Up With PH - Pulmonary Hypertension News Posted: 13 Nov 2020 07:00 AM PST
Day 13 of 30 Days of PH This is Tatiana's story @lolmamio531 My life before I was diagnosed is significantly different from how I have to live my day to day life now. I was diagnosed with Pulmonary Arterial Hypertension (PAH) at age 5. It is believed that I had always had it, but they never found it until then. Living out my life pre-diagnosis was hard. It seemed I could never keep up with everyone else around me even though I had given it everything in me to do so. The simplest of things like twirling in ballet made me breathless and practically gasping for air and complaining that my chest hurt. My parents would have me sit for a while until I felt up to going back to participating. We could never understand why I was unable to keep up. I'm a very independent person. Even from a young age I always wanted to do things on my own and that meant keeping up with my friends. But when doing activities, the fact is I would end up walking slowly behind my peers as they ran around playing. It made me feel incapable. I could never understand what was so different about me from everyone else. I knew something about me was different compared to others, but I never let that stop me from doing what I wanted. When I got diagnosed and was told why everything was so hard for me to do, it all began to make sense. My doctors explained what I could no longer do and provided me with a regimen and list of my new treatments and pills. I didn't know what to think of it. I just knew that everything was different now and I would never be the same. I'm 14 years old now and know my limits. I know I can't go to brick and mortar schooling due to my disease. But for the most part, I still don't let my restrictions stop me from doing what I want to do. I also follow my regimen and do my treatments without resistance. I must admit that the same routine every day sometimes makes me feel like I'm living for my treatments instead of doing my treatments so I can live. It's easy to forget and get caught up in the routine. Having PAH is hard, but it doesn't stop me from living my life. Follow us on social media!  Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen's love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, "Life As A Caregiver" column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived. × Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen's love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, "Life As A Caregiver" column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived. Latest Posts  |
| 30 Days of PH: What PH Has Taught Me - Pulmonary Hypertension News Posted: 28 Nov 2020 07:00 AM PST
Day 28 of 30 Days of PH 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.
Follow us on social media! Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen's love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, "Life As A Caregiver" column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived. × Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen's love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, "Life As A Caregiver" column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived. Latest Posts  |
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