The Gift of Writing for ‘Pulmonary Fibrosis News’
As we begin a new year, I want to wish all of you a happy and healthy 2018. I hope the holiday season was magical for you and that the year is off to a great start.
Each new year, I like to reflect on the time passed and the things I learned, along with the hardships, failures, good times, and gifts the year brought me. One of the biggest gifts I received this past year was the ability to write for Pulmonary Fibrosis News. It helped me connect with so many of you who share similar life experiences.
Through last year’s columns, I’ve had the opportunity to grow as a patient, an individual providing support to others, and as a friend. More specifically, because of sharing my experiences as a patient in my columns, many of you have shared feedback and thoughts on your own perspectives, which naturally may differ from mine. With this, you have given me knowledge I couldn’t otherwise have had, experiences that are personal but ever so helpful, and insight that only another patient could offer.
To hear directly from many of you about these things, or to watch conversations and discussions blossom through a column topic, is truly a gift and I am very thankful. Much comfort is found in the company of friends and family, but nothing is quite like connecting with a community of people who really understand what you are going through. For me, these are the people who take time to read and comment on my columns, and for that I am grateful.
While I reflected on the past year of writing for Pulmonary Fibrosis News, I realized that many columns were generated based on my own needs, experiences, and thoughts. So, I would like to take this time to ask you: What topics, themes, or curiosities would you like to see written about in my columns? Consider this a formal invitation for your thoughts and ideas on future column topics.
For now, I want to highlight some of my previous columns and the comments that have sparked connections, meaningful discussions, and friendships:
- “The Balancing Act of Living with IPF“: This column, published in July 2017, enabled me to connect with a 28-year-old who also is living with IPF. While connecting with anyone who reads my columns is meaningful, sometimes when I have the opportunity to connect with people of the same age and life stage as me, I feel significantly less alone on this journey.
- “Despite IPF, I Am Grateful in this New Year“: I often return to this column, published in January 2017, to read the comments on some of my tough days. I try to be grateful as often as I can, but it is inevitable that I will have bad days. This column is so meaningful to me because several folks connected with me directly about what they are grateful for in their own lives, and many were applicable to my life, too. I added them to my own gratitude list.
- “I Need to Trust You When You Say I’m Not a Burden“: This column from May 2017 is meaningful to me because the comments really validated how I felt. Asking for help is one of the hardest things for me, and this was the column’s focus. The comments allowed me to realize that asking for help, in general, is really tough, not just for me but for others as well. That said, it is also necessary for those of us living with IPF.
- “What I Don’t Need as a Patient with IPF“: I felt really guilty about writing this column in August 2017, as I feared I would be considered demanding. The comments it generated were from people sharing their thoughts and offering applause for my willingness to tackle such a sensitive topic. I am so grateful for the connections made from this post as well.
These are just a few columns that were meaningful to me in 2017, but the list could go on and on. Please feel free to share with me some topics you’d like me to cover in 2018!
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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.
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Comments
ash
Hi -
I think writing short columns about any new experimental therapy you may be trying or looking at getting into clinical trials, or medication - because as much support and sharing of experiences one may find within columns and responses, I think people are also looking for hope in the form of cure or halt to the disease.
Not every doctor is great and not every doctor will suggest - patients need to do research as well, because they are the ones who care most about their own lives.
So I think - sharing this will be most helpful.
Charlene Marshall
Hi there,
Thank you for your comments and for reading my columns.
Unfortunately, despite my doing plenty of research (when I have the time, patient's have a lot of things on their plate including appointments, symptom management, careers, etc) I am not a candidate for clinical trials or experimental therapies. As you likely know, there aren't many options for IPF patients for any experimental options and for the ones that do exist, patients must meet all the criteria to apply to be considered. Certainly if I am considered or do engage in any type of clinical trial, I will definitely write about it and share it with others. I agree with you more than anything about people looking for hope in the form of a cure or a desire to slow down the disease. Unfortunately, not many patients have insight to this, and thus not a lot to share. On the Pulmonary Fibrosis News webpage, there are contributions from people who are focused on the science of this disease. I'd encourage you to read those articles to see if any might be of interest to you?
Thanks again for your comment and feedback.
Charlene.
ash
Hi - thank you for taking the time to respond, appreciate it. Yes, you are so right, the time an illness of this magnitude consumes - everything starts revolving around it. Very true about clinical trials as well - criteria based. My hope is that something comes out of stem cell therapies (spheroid), and potential reversal to the disease.
ash
Hi - thank you for taking the time to respond, appreciate it. Yes, you are so right, the time an illness of this magnitude consumes - everything starts revolving around it. Very true about clinical trials as well - criteria based. My hope is that something comes out of stem cell therapies (spheroid), and potential reversal to the disease. Sometimes these things don't move fast enough.
Rebecca Jarrett
After my 3rd pulmonary embolism in 2003, I was diagnosed with pulmonary fibrosis and I read that people usually die within 5 years. My specialist has me on blood thinners, prednisone and other steroids that I inhale daily. October 2006 I decided to go with natural treatment and was introduced to Mbeki Herbal Clinic natural organic COPD Herbal formula, i had a total decline of symptoms with this COPD Herbal formula treatment. The infections, shortness of breath, fatigue, dry cough and other symptoms has subsided. Somehow, the herbs managed to keep me alive for 13 years.Visit Mbeki Herbal Clinic official website ww w. mbekiherbalclinic. com or email herbs@ mbekiherbalclinic. com.
I have had great improvement with my over all respiration with this product and i breath very much easier, i can never be thankful enough to nature
Alice
I was diagnosed with pulmonary fibrosis 2015. I was put on high doses of prednisone in 2016. In December 2017 I was hospitalized for 14 days with pneumonia. I was on oxygen 24/7 and the bottom lobes of my lungs are destroyed! I lost hope because my doctor said he have no idea how long I have to live but Glory be to Almighty for leading to Best Health Herbal Centre. I purchased pulmonary fibrosis herbal remedy from Best Health Herbal Centre, the herbal remedy slowed the progression within 5 weeks of usage, 80-85% success rate! This gives me great hope it will reverse my pulmonary fibrosis totally.
Charlene Marshall
Hi Alice,
Thank you so much for reading my column and for contributing your comments. I am confident that others will be happy to read of your experiences, and might connect with you regarding additional questions about Best Health Herbal Centre. I am so glad that the remedy has seemed to slow down the progression of your PF, that is excellent news. Maintaing hope throughout this journey is so important, so I am grateful that you shared with us, thanks again and best of luck :)
Charlene
Hasley
First, please always have an inhaler with you. Nothing else will be as effective and not seeking medical help could cost you your life. I have asthma and COPD, caused by smoking. I use an inhaler 1 to 2 times a day; when feeling wheezy and coughing more than usual. My father came across a forum where so many people are writing about (Best Health Herbal Centre). They sell herbs supplements for different kinds of deadly diseases, so me and my family decided to give it a try. We contacted Dr linda (Best Health Herbal Centre) immediately and purchased herbal remedy for Asthma and COPD. I used the herbal remedy as instructed and It totally reversed my Asthma and COPD within 6 weeks of usage, all thanks to Best health Herbal Centre, God bless.
Charlene Marshall
Hi Hasley,
Thank you for reading my columns and contributing to the comments, I really appreciate hearing from readers! I agree, inhalers are so important for everyone to carry with us, especially those as designated 'rescue' inhalers. I hope people take your advice and consider keeping their inhalers with them at all times. I'm glad you have found some relief for your Asthma and COPD!
Regards,
Charlene