Celebrating My First Anniversary of Writing ‘Worth the PHight’

Celebrating My First Anniversary of Writing ‘Worth the PHight’
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As a child, I enjoyed writing. My Moma always reminds me of the “I’m sorry” letters I wrote when I did something wrong. Writing cards and notes and mailing them is something I have always enjoyed. Once my parents divorced, we moved around often. This made it difficult for me. But I tried to keep up with some of my closest friends via letters. Of course, we did not have social media to stay in contact with as we do now.

Last year when Brad, the director of columns for Pulmonary Hypertension News, interviewed me about writing my column, I was overjoyed. It was around the same time that I was talking about starting my old blog up. I wanted to write and fulfill a purpose; this timing was perfect. I remember he asked me what I would write about. I vaguely remember, but I am sure that I was rambling as I was so nervous and excited. Although, in the back of my mind, I was asking myself how I would ever have that much to write about.

I named my column “Worth the PHight.” My goal was to share the ups and downs of my PH journey with others while offering hope. Sharing helps others know they are not alone. Because PH does not yet have a cure, we all continue to PHight this journey together. Together we are stronger as we promote self-advocacy and spread awareness. Little did I know just how much writing my column would help me, too. Writing is therapeutic.

Fast forward a year later. I have written every week, and I still have topics to write about. Realizing how much others enjoy reading about my journey with pulmonary hypertension inspires me. BioNews Services, the parent company of Pulmonary Hypertension News, has offered me that purpose. I also have the opportunity to meet and talk with those around the world living with rare diseases. BioNews Services has about 65 rare disease communities.

These are the most empathetic, caring, and amazing people I know. They have become another family for me. Everyone I have had the opportunity to talk to has been genuine and compassionate. I also recently started moderating the PH News Forums. I work with the other moderators, Brittany and Colleen, daily. Before I was a moderator, I visited the forums most days. This close-knit group of PH patients and caregivers offers abundant support. I learn from the members daily.

Despite 15 years of living with PH, the forum members continue to teach me. I’ve always been the caregiver type. I worked in nursing before PH and that desire to help never left me. Finding new ways that I can help and support others on their PH journeys is cathartic for me.

Thank you to my readers. Each week you continue to support me and share my column with others. You do not know how grateful I am for you all. To our PH forum members, thank you for showing up and supporting others while you are PHighting yourselves. Last but not least, thank you to my BioNews Services family that took a chance on me. You all are some of the most passionate and empathetic people I know. Every day you shine your light on others while fighting your own battles.

Let’s continue to support and lift others with love, encouragement, and air hugs, for now. I will leave you with one of my favorite quotes. I look forward to and am excited to start another year with y’all.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” –Maya Angelou

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

Jen is a columnist and forum moderator for PH News Today. Jen worked in nursing before the script changed upon her diagnosis of PH in 2005. Advocating and meeting those with PH has always been an essential part of her life. Her passion is to instill hope and remind others in the PH community that they are not alone. In her weekly column, she delves into the roller coaster of emotions that come along with PH. Jen lives on the Texas Gulf Coast with her husband and mini-schnauzer. Together we PHight stronger.
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Jen is a columnist and forum moderator for PH News Today. Jen worked in nursing before the script changed upon her diagnosis of PH in 2005. Advocating and meeting those with PH has always been an essential part of her life. Her passion is to instill hope and remind others in the PH community that they are not alone. In her weekly column, she delves into the roller coaster of emotions that come along with PH. Jen lives on the Texas Gulf Coast with her husband and mini-schnauzer. Together we PHight stronger.
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8 comments

  1. Kathleen says:

    Jen,
    When we help/share with others, it is very uplifting for our souls. You have brought so much comfort and hope to so many people through your stories. I learn so much from all of you! Thank you!

    • Jen Cueva says:

      Hi Kathleen, thank you for reading. I’m happy to hear that my columns are helpful to you. I appreciate your kind words and support. I look forward to the year ahead.

      Kind regards,
      Jen

  2. Perveen Kumar says:

    Hello jen Greetings of the day.your share for pah very helpful for me.i also face same from last two years& your column definitely support me for fight this disease. Thanks & regards.

    • Jen Cueva says:

      Thank you, Perveen,
      I know this PH journey is not easy but is possible! I am grateful that you found something to relate to and hold onto while reading my column.

      Stay well,
      Jen

  3. Vivian says:

    In August 7th 2019 i was diagnosed w/ PAH . It was hard for me . I was 25 at the time & I had nothing but the scariest thoughts running through my head . I was hospitalized the whole month of august . When I started my PAH medications it took a huge impact in my body that i was basically out of it for a few days or I believe it was a week before I started being able to eat again , talk etc . All I would do was sleep .

    After august as most of you know we have to go through the whole home nurses stopping by & checking you w/ your remodulin pumps , vitals , weight & pills . There was one CVS nurse who specifically email me this forum & told me how if I’m not involved in groups I should really read others stories w/ being diagnosed , side effects & just everyday things . You guys have no idea what this forum has done this past ( almost ) year . I’ve never been active because I was always so depressed . It took me a while to accept the fact that this is my ‘ new ‘ way of living . Maybe it isn’t permanent … maybe in a few years there’s gonna be something better for us but you guys , every single one of you ladies who comment .. who share experiences have honestly saved me . Not from anything such as taking my own life but saving me in my depression … saving me when it was hard for me to speak to my parents of how this new life styles makes me feel .

    • Jen Cueva says:

      Hi Vivian,
      Thank you for such kind words. I am grateful that my writing has offered some help to you. I have had PH for 15 years, but I continue to learn from our PH forum members daily. Depression can easily creep in as PH can be overwhelming.

      It sounds like you have made some progress and can share some of your PH journey now, and that will help many others. Thanks for reading. I hope to see you around in the forums more.

      Kind regards,
      Jen

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