• 30 Days Of PH

    Posted by Colleen on October 6, 2020 at 3:20 pm

    In recognition of PH Awareness Month in November I am overseeing a project called 30 Days of PH. This is something Jen Cueva started for us last year.  It’s an opportunity to highlight different voices within our community. Contributions are all voluntary, but keep in mind that we’re only looking for short posts (No more than 400 words). You can check out last year’s archives here.

    The goal with this project is to feature a person with PH (or family member or partner to someone with PH) every day in November. This is a space for you to write about your experience with a particular topic, experience, or theme; and how PH has influenced that. This is a reflection on your experiences.

    At the end of November our goal is to have a collection of different approaches to different facets of life with PH, that could (hopefully) reach and help manifest an optimism or empowerment for readers. The way you wish to wield and share that experience is up to you.

    Regarding a topic, is there anything in particular you’d like to write about? Some suggestions are: independence and PH, family life, employment and PH, managing care, etc. Let me know if any of those sound interesting, or if you have your own ideas. Feel free to scroll through last year’s archives for inspiration.

    The deadline is October 28th so if you are interested in participating please private message me, @colleensteele as soon as possible. I will then provide you with more information and guidance.

     

    vanessa-vaile replied 3 years, 5 months ago 4 Members · 11 Replies
  • 11 Replies
  • jen-cueva

    Member
    October 7, 2020 at 9:20 am

    You are going to do awesome, Colleen! It was so much fun, and I enjoyed getting to know some a bit more by reading about their PH journeys. You are off to an excellent start.

    I am hopeful that some of our forum members will want to share their experiences. Also, remember, forum members, this is YOUR story and not a report or anything. It is like sharing your own IG or FB post in your own words and within the word limit. So, it is nothing to be nervous about.

    I did have a few last year that was just under 300 words, and those worked well, too. Colleen is going to rock this project. Together by sharing our stories, we will spread better awareness of PH. So, let’s lift our voices and share our PH journeys!

  • Colleen

    Member
    October 9, 2020 at 3:23 pm

    Hey PHriends! Just want to highlight this project again. November will be here before we know it. Due to epidemic concerns you might feel limited to what you can do for PH Awareness Month. Participating in “30 Days of PH” would be a great way to do it! It’s easy…want to know why? Because what we’re looking for is similar to what you would share here in the forums.

    Re-visit some former posts and comments. Is there a topic that has affected you the most? Do you have more that you would like to say about it that might help others? If a topic inspires you please message me and I will send you instructions on how to share your thoughts and experience through “30 Days of PH”. I only need 300-400 words…in fact, I need you to not go over that.

    Here is a link to last years contributions. You could also choose a previously tackled topic but with your own personal take on it. I hope many of you will reach out to me with willingness to participate.

    https://pulmonaryhypertensionnews.com/category/30-days-of-ph/

  • jen-cueva

    Member
    October 9, 2020 at 3:32 pm

    Well said, @colleensteele! And we have some amazing members who love to share their journeys. Each of you has unique stories, and that is what Colleen wants to showcase in each of the 30 days. So, who wants to join? I have a few names that I think would, but I rather you all speak up first.

    I’m excited to see this in November. Help spread awareness!

  • Colleen

    Member
    October 12, 2020 at 5:47 pm

    I’m hoping some of our members will come forward and participate! The discussions in our forums are always so informative and heart felt. Would love to see several of you extend your sharing and support a little further by participating in “30 Days of PH”. If you are interested please reach out to me soon!

  • Colleen

    Member
    October 19, 2020 at 12:23 pm

    I’m still looking for PHriends to participate in this! I promise it’s not too time consuming or difficult. Just share what you know and have experienced in no more than 400 words. This is invitation goes out to our newest members as well. Let me know if you want more information.

    Have a great week everyone!

  • jen-cueva

    Member
    October 20, 2020 at 9:56 am

    I can reiterate how simple this is and how much this gets our personal PH journeys out there. You never know who may read your story and feel like they can relate.

    Please think about this and know this is nothing formal. It is like writing a short story here within the forums.

  • dawnt

    Member
    October 20, 2020 at 8:54 pm

    @colleensteele, I’m willing to volunteer for the 30 days of ph. Would want some guidance as to just what you’re looking for. I did read some of the stories from last year, and would certainly read more before I would submit something. If you get enough other volunteers, no problem skipping me!

  • Colleen

    Member
    October 20, 2020 at 9:23 pm

    @dawnt yes! I would love it if you would participate in 30 Days of PH! Can you private message me an e-mail address so I can send you the instructions and details?

    If I end up with more than 30 volunteers than we will extend this project out for how ever many stories we receive. PH Awareness isn’t just for November. So, if anyone else would like to contribute please let me know!

  • jen-cueva

    Member
    October 21, 2020 at 11:28 am

    Thanks, @dawnt, I look forward to seeing your story next month! Colleen is doing an amazing job!

  • Colleen

    Member
    October 28, 2020 at 1:43 am

    October 28th was the deadline but I’m still in need of more participants and can extend that date out further. Please email me at [email protected] if you are interested.

    You can decided on your own topic but here are some suggestions: “Life With Supplemental Oxygen”, “I Have PH And Still Work”, “I No Longer Work Because of PH”, “Things You Enjoy Doing That Are PH Friendly, ex: arts and crafts, gardening, writing, etc.), “The Therapeutic Benefits Of Having PH and A Pet”, “Military Life”, “How PH Has Affected My Relationships”, “The Joys and Challenges Of Being a Caregiver”….the list could go on.

    I hope to hear from you!

  • vanessa-vaile

    Member
    November 11, 2020 at 2:36 pm

    Once again I’m participating my own way, mostly on twitter, co-opting the IG hashtag for Twitter. My goal is to share at least one or more items per day on either Facebook or Twitter. I’ll try to draw on IG collection too but don’t check in there often. I started my Nov PH awareness late this year due to election delays due to maintaining a Facebook page for a local Indivisible group. That means I’ve been swamped — still am for that matter.

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