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  • Joyce Douglas

    Member
    April 28, 2018 at 7:42 pm

    Hello, yes, I am living with Idiopathic Pulmonary Fibrosis. I was diagnosed almost a year ago, on May 6th, 2017. I have been taking the medication ‘Esbriet’ now since June lst, 2017.  I have had a few of the side effects but not to the extent that I had to discontinue taking the medication. I believe it has kept the fibrosing from getting worse, but it hasn’t decreased the muscle deterioration that is happening.  I find I do not have much muscle tone left, and very little energy.  I know that since I was one of the thousands of female smokers back in the 50’s and 60’s, continuing on to the early 80’s. I did expect that I would eventually have to pay for my foolishness and stubbornness.  Well, I didn’t dream it would be this illness that I would get, but since I got it I have used all my efforts to keep going and not let it get me.  Taking part in the PF news forums and reading from other sufferers is amazingly helpful.  Thank you everyone for your part.

    • Charlene Marshall

      Member
      April 29, 2018 at 8:15 pm

      Hi Joyce,

      I am so glad that you’re finding the PF forums helpful! We’re happy you’ve joined us 🙂

      I also find the people on these forums very kind and supportive, and my role as forum moderator has certainly been a rewarding one. I too am thankful that this online platform for support exists, although I wish it wasn’t due to living with this life-threatening disease.

      Have you thought about what you’re going to do on your diagnosis anniversary date? I struggled with this for awhile, and didn’t want to do anything that was “celebratory” but did want to acknowledge that I lived another year. I was diagnosed on April 7th, 2016 and so I just passed my two year diagnosis date. Not sure if you read my recent column (below) about this, but I needed to write about it as I am always unsure how I will feel on diagnosis anniversaries. What are your thoughts of what you’ll do on May 6th? Have you thought much about it?

      If you’re interested, here is my column on my two-year diagnosis anniversary: https://pulmonaryfibrosisnews.com/2018/04/12/coping-pulmonary-fibrosis-diagnosis-anniversary/

       

      Take care,
      Charlene.

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