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How Our Online Forums Are Sustaining Me Through Pulmonary Fibrosis.
I recently wrote a column that was published to Pulmonary Fibrosis News about how different groups of people help me cope with my idiopathic pulmonary fibrosis (IPF) at different times. Seemingly, each of these groups support me when I need it the most, and in a uniquely different way than the other…
I wanted to share the column with you all, which you can find HERE. You’ll note, I mentioned this group, the PF News Forums community in that column because so many of you have sustained me throughout this almost-three-year journey so far and I want to quickly say thank you. You’ve made me laugh, shared personal information and experiences that mean more to me than any doctor’s words, helped me build new friendships and encouraged me to try new things.
Despite so many hardships resulting from this disease, and friends/family members wanting desperately to understand what it is like to live with IPF; this is the one place I can turn to and know people “truly get it”. While I wish none of us were plagued with this awful disease, it brings so much comfort to know that we aren’t alone. I don’t have to explain on the forums, I can just voice how I feel and likely someone has had the same experience and can relate to what I am going through. This is really invaluable!
Take a peak at this column for your shout-out if interested, and please know how much I appreciate you all!
Which groups of people in your life have been most helpful throughout your journey with IPF/PF?
Has your answer to that changed as your disease progressed (ie. friends once were most helpful, now an online community is) or remained the same or equal?
I’d love to hear your thoughts!
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2 Replies
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Well hello Charlene ,
It has been a really long time ! But I’m hear , alive and back to my base line ! The winter had taken its toll on my health in not so healthy of a way . But that being said hardly a day went by that I missed reading the blog ? . While being treated for a upper respitory infection my doctor had me start a med called tesalon pearls , within two days my caught was just about gone ? At this writing I’m kinda not all here , but dealing , it was a struggle there for a bit and a fight . I hope this writing finds you doing well . I’m making this short because what I’ve got in mind is to lump all my opinions in one post to cover all the blogs that I’ve read . I will be writing soon , missed your correspondence much .
Your friend
chuck
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Hello my friend!
It has been a long time since I’ve heard from you, and I am so glad you wrote to me and letting me know you’re back to baseline. This is wonderful news! 🙂Happy first day of spring a few days ago – it really is coming, I know the winter has been rough on you so hopefully here is to a better several months coming your way with nicer weather. I found the time change, and having it be lighter later in the evening, has really been good for me. I don’t feel as rushed after work to get home, make dinner and take my dog for a walk before it gets dark. Its nice to be able to move a little slower and at my own pace when I want to get things done in the evening since it is lighter later … a sure sign that spring is coming!
I’m hopeful that the medications the doctor provided helps you remain cough-free. Sounds like you really got hit by a terrible upper respiratory infection this winter. Glad it is on the mend, even though you might still have some tough days. Hang in there!
I missed our correspondence too, feel free to write anytime but please prioritize your own needs/care and rest 🙂 I will always be here, and just loved hearing from you and that you’re doing alright.
Take care, missed you!
Charlene.
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