Despite IPF, I Am Grateful in This New Year

Despite IPF, I Am Grateful in This New Year
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younger than 30

It would be easy to make this column about the difficulties that come with living with IPF. In fact, several possible topics for this post were about just that, including: How exhausting the holidays are with IPF; how shopping for the holidays in large crowds of people sends my anxiety through the roof because of germs; how difficult the winter weather has been on my lungs; or how irritating it can be to have weeks filled with doctors’ and specialists’ appointments.

However, now we are in the new year, and as I look around I realize more and more that I have a lot to be grateful for. So, while the topics I mentioned are difficult to deal with at times, I wanted to share a tip that has really helped me reframe the challenges/difficulties that come with my disease, and has helped me recognize all that I am grateful for. You don’t have to adopt this tip, but I wanted to share it and whether you try it or not, I challenge you to find something you’re grateful for and share it, document it, post it, pin it or just hold it close.

As I wrote recently, the bitter cold and snow has really been a challenge for me and we’re barely through the first quarter of winter. I also had a very full week of doctors’ appointments last week that were tiring, and I felt as though I couldn’t keep up. I was feeling a bit incompetent and very upset and angry at my disease.

Coincidentally, (or perhaps intentionally, depending on your belief of how the universe works) I came across my “gratitude journal,” which I bought in Australia but had forgotten about because it was tucked away in my handbag. I decided, as of December, that I’d start jotting down one thing per day, small or large, and review it when I was feeling discouraged or frustrated, to highlight that despite the bad days, I have a lot to be grateful for.

This tip has really helped me, and I thought I’d share a few things that I have written down in my gratitude journal. Perhaps you, too, can be reminded that we have a lot to be thankful for, even though sometimes it doesn’t feel that way. Maybe some of the things I have noted will resonate with you, and you will find comfort that someone else feels the same. Here are a few journal entries:

  • During a winter storm, where more than 30 centimeters (about one foot) of snow fell in one week, I am grateful for a neighbor who brings home a plow to remove the snow from the driveway so that I can get my car out.
  • When I am driving and I look over and see a man/woman who appears homeless because he/she is sleeping on the ground, I am so very grateful to come home to a warm house and bed.
  • When I feel overwhelmed after looking at my holiday schedule, I am grateful to have friends and family who love me and want to spend time with me during the holiday break.
  • I am so very grateful for my dog. Some people may not appreciate animals, or understand the love someone can have for a dog, but mine has been my savior since my diagnosis and I am very grateful for her. She’s my baby!
  • When a challenging health event/life-threatening injury occurred to someone I love, I am grateful for the doctors, nurses and hospital staff who are taking care of him, and that, despite a long road ahead, he will be okay.
  • I am grateful for the noisy “pings” of my phone indicating that I’ve received a text message. It means people are kind enough to check on me.
  • I am grateful for a full hour of rest and relaxation last week as I enjoyed a massage on a heated table under several warm blankets.
  • When I feel irritated, sad or frustrated during the day, be it with something work-related or something personal, I am grateful for colleagues and a manager who support me in ways that I never could have imagined.
  • After a long day of driving into the city for appointments, discussions and/or painful medical procedures, I am grateful to know that I am a patient at one of the world-renowned transplant centers, which means I am getting high-quality care.

What are you grateful for? Please feel free to share, or just hold close in your thoughts.

Note: Pulmonary Fibrosis 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 Fibrosis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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4 comments

  1. I am forever grateful for my partner she see’s that I have all I need and want during my terrible fight to breathe on..I am grateful because everyone doesn’t stick around for the fight I love you T

  2. Karen Jantzi says:

    You have a tremendous attitude and outlook! I applaud you. But, I want to share one important thing with you I’ve learned and that is that it’s not over til God says it’s over. God still heals today!! It is His desire for us. I know ahd believe that IPF is NOT going to take my life. My faith and belief in God has caused me to seek Him and believe in the promises of His word that says I will live and not die. It’s not positive thinking, though that is good. Positive thinking is not the Healer. Jesus is. I’m praying that you will know Him that through Him, you will be totally healed. I’m already better with no help from doctors. He is the cure! I’m asking Him to touch you too. Mućh love and many prayers. Oxox

  3. John Barell says:

    Charlene
    Many thanks for reminding us of what we can and should be thankful for even with a diagnosis of ipf. I am twice your age and am saddened by someone so young contracting ipf. Yes, it is a real struggle when you realize you need to be on oxygen 24/7 (as I am) and that every movement about the house desaturates your 02 way down.

    I am most thankful for my loving companion and wife, Nancy, whose life has also been turned topsy-turvy. The burden on her is immense, but it’s always with a reassuring smile she urges me to “breathe slowly.”

    What keeps me going is how Joseph Campbel challenged each of us: “Follow your bliss.” Mine is writing for educators and daily I keep composing, attempting to tell stories of amazing educators K-12 in US and Canada and elsewhere. Always with a focus on being “inquisitive to a fault.” (Dr. Sally Ride)

    Each of us needs to have a passion, one that keeps our imaginative flames burning and that, consequently, elevates our spirits above the ipf and the real inconveniences associated therewith.

    Daily each one of us “touches the Eternal” at every moment and in every action of our lives. (Reinhold Niebuhr)

    Thanks, Charlene for your brave comments and very best wishes in the future.

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