A Gratitude Miniseries: September 2018

A Gratitude Miniseries: September 2018

younger than 30

Ed. note: A continuation of the monthly “Gratitude Miniseries.”

As September drew to a close, I was preparing this column by intending to say the month was full of all good things. That was before I learned that a close friend and colleague had died of complications from pulmonary hypertension. According to her wishes conveyed in one of her last social media posts, I am not going to say she lost her battle to this disease — because she didn’t. She faced her illness head-on, advocating for what she needed, changing doctors when she didn’t feel like she was getting the best care possible, and actively voicing concerns about the lack of therapy options available here in Canada.

This wonderful colleague was a member of the BioNews Services community, and out of respect for all of the columnists who are grieving with me, I don’t want to spend this one dwelling on her death. However, I cannot write this without commenting on just how much her talent, humor, and wittiness will be missed. We will continue writing in her memory, and maybe once my heart heals a little more, I will write a column about all the wonderful things she has taught me. And there are so many.

For now, since I can’t gather enough words to talk about my friend, I’ll write about the many wonderful things that did happen this month. In my previous column, I wrote that things were on a gradual upswing during August. For the most part, I can say that September was wonderful, although I have no idea how the days passed so quickly.

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Among other things this month, I am so grateful for quality time with friends and family. I am learning the hard way, especially as I endure the loss of yet another friend, that life is too short, and I strive to appreciate the moments with the people I love most. Here are some of those moments:

  • Spending time at my cottage with a friend: Spending one-on-one time with a close friend at the cottage brought me a lot of joy. My parents had left on vacation, so the place was ours to drink wine, watch television, walk the beach, take silly pictures, and just catch up. It had been a long time since we’ve been able to do that. We’ve been friends for many years, so it was nice to spend that quality time together without an agenda or interruptions.
  • Meeting my friend’s new baby boy: It’s hard to believe that my friends and I are at the age of having babies. It was so joyful to hold the son of one of my best friends. We were roommates in university, and I stood up at her wedding, so seeing her and her husband reach this next milestone was wonderful. Spending this time together with no time constraints, as I was on holidays and she was on maternity leave, was amazing. I can’t wait to visit her little family again soon.
  • Vacationing out east: Every moment in Nova Scotia with close friends was special. Of the many quality moments, my favorite ones were the times we spent laughing, singing aloud in the car, going to the mall with the kids, and listening to others playing guitar at their campground. When you’re faced with a life-threatening illness, these moments bring you so much joy. I wish everyone could realize how special quality time with friends truly is. Please don’t ever take it for granted.
  • Spending the long weekend with family: The Labor Day weekend at the cottage is always bittersweet for my family. It wraps up the summer season when we get to spend a lot of time together. It means that autumn and winter are on their way. My extended family doesn’t see each other much over the winter, except for the Christmas holidays, so we cherish the long weekends at the cottage.

What were you grateful for this month?

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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.

8 comments

    • Charlene Marshall says:

      Hi Elizaabeth,

      Thank you for writing to us, although I am so very sorry to hear of Richard’s passing. This is such a cruel and unfair illness, and my only comfort/hope is that he is breathing easier now without struggle. My thoughts and prayers are with you during this tough time.

      I took your comment back to our tech team, in hopes that we could remove your email as requested from our mailing list. It looks as though we can’t do this, that you’d have to unsubscribe from columns being sent out. To do this, please go to the main Pulmonary Fibrosis News site and unsubscribe. Or, at the bottom of the email there should be an unsubscribe button as well. Not sure if this helps? Please let me know if you’d like me to send more detailed instructions.

      Holding you close in prayers,
      Charlene.

  1. Tracie Shollenbarger says:

    I am not under 30 years old I’m 54, but newly diagnosed with pulmonary fibrosis. I would like to be part of a support group. I’m in the precarious position of being too sick to work most days, but not sure if I will qualify to be disabled by social security. With the income dried up for 3 months now I’m worried about mortgage payments and bills. My kids are trying to take over financially, but it’s a burden that is overwhelming. We live together so fortunately they know these bills were paid by me for there whole life, and they don’t mind trying to take over… But I just feel guilty, and I’m mad that overnight I can no longer work as a nurse. I can no longer be free of an 02 tank, and have to be careful of having oxygen in the home. Not to mention my extended family has no idea what I’m dealing with and thinks I’m trying to get out of working? I just can’t deal with these accusations right now. I told them to educate themselves about the disease and basicly have left the ball in their court. At the store last night the cashier asked what it was like being on oxygen, I was telling him it’s like being on a leash that gets caught on things and keeps you confined. I said 3 months ago I was a nurse and very happy in my career, and overnight I’m not able to do my job anymore. I was in tears and made him feel bad probably. I need help with this. Thanks for listening.

    • Charlene Marshall says:

      Hi Tracie,

      So sorry for my delay in getting back to you, but I am glad you reached out to us via the comments. Thank you for reading my columns!
      It is so hard to grapple with this cruel disease, isn’t it? All of the ‘whys’ can feel overwhelming, and then having to adjust to oxygen can be absolutely exhausting mentally and emotionally – I remember that time well. Doesn’t matter about our age, it seems unfair altogether, doesn’t it? Have you checked out our Pulmonary Fibrosis News forums yet? While it isn’t a formal support group (we might be making one though) there are a lot of amazing folks on there who truly “get it” and are incredibly helpful. You can sign up here if interested:https://pulmonaryfibrosisnews.com/forums/

      Adjusting to this disease takes a lot of time, and I hope you’re gentle with yourself in that process. There is nothing you did to deserve or cause this, and I had to work through that with a professional before I truly understood it. Sometimes I still see the counselor about the guilt I feel for getting sick, it helps. Feel free to connect any time Tracie, I truly understand.

      Thinking of you,
      Charlene.

  2. Sandy vanZyl says:

    Hi Tracie, I went through this exact same scenario on Jan 3, 2018 and have been on oxygen 24/7 ever since. I worked full time in a job I love and miss to this day….I’m on a leave at this time and waiting for a lung transplant in Toronto. You can email me @ [email protected]
    I like you was in complete shock…how did my life change overnight …… here I am 10 months later, going to physio to try to get strong again.

    Sincerely
    Sandy vanZyl

    • Charlene Marshall says:

      Hi Sandy!

      So nice to hear from you, and thanks for taking the time to email such a kind note to Tracie. I am sure she appreciates it, and I was glad to read a bit of an update on your through your reply as well. Are you in Toronto now on the list? I am at TGH often, we should definitely find a time to connect for coffee. I’ll keep my fingers crossed and sending you all the prayers in the world that the perfect pair of lungs come soon. Take good care!
      Charlene.

  3. Steven Dragoo says:

    Hi Charlene – I am grateful for you dedicating so much effort and time to ensure the success of this valuable newsletter. – SteveD

    • Charlene Marshall says:

      Thank you so much for your kind words Steve! I so appreciate everyone who reads my columns, and for the opportunity to have this therapeutic outlet for me 🙂 Your comment made my day, thank you! Wishing you well, Charlene.

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