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    • #28859
      Christie
      Moderator

      Last week in my column, I talked about how my mom had a bit of an identity crisis when she was diagnosed with IPF. She was terrified, heartbroken, and somewhat embarrassed of her illness. She struggled to come to terms with her diagnosis/prognosis, and the identity of “disabled person”, and therefore did not take full advantage of her disability accommodations when her IPF was progressing.

      Some things that she found especially hard to accept were being forced to retire on disability, being issued a handicap parking placard, and the visibility of her previously invisible illness when she began to use supplemental oxygen. Each of these milestones felt dehumanizing and it was hard for her to realize or accept that each of them happened to benefit her health.

      As a chronically ill person, have you struggled with your identity? What milestones have been hard to process on your journey with PF? Do you have any tips to make it easier for someone who might be struggling with the same feelings?

    • #28866
      Sam Gilmore
      Participant

      I know how your mom feels. I am 73 year old self made man. I was very active and some what prideful in a good way man I came down with IPF like 4 years ago the worst day of my life was the day I was diagnosed. Embarrassed Having to be helped by my family sometimes I feel so helpless on O2 24-7 Not active hardly at all even with Oxygen. The feeling helpless is the worst but you just have to realize you can only do so much and except what you can and cannot do. I thank every day for my wife of 54 years and y 4 sons. One thing that helps is discussing this with my family and all know the end and what to expect. Give your mom a hug and keep your dignity Take care

      • #28887
        Kathleen Ryan
        Participant

        Hi, Sam. I feel the same as you. One difference for me is that in my mind I still think I can do things I enjoy. When I try and fail, the depression is overwhelming. Not being able to work any longer still frustrates me and I get angry at myself that I can’t push through this. I have a great son who I rely on, but I don’t want to burden him and it’s just a horrible circle.

    • #28890
      Karen Martin
      Participant

      I know that the thing that helped me the most was going to pulmonary rehab.  I met other people with the same/similar issues as I have and realized it is far more wide-spread than we think.  Seeing others getting on with life and being happy and helping themselves with exercise made me see the situation very differently.  I will admit that one of the first things I said to my pulmonologist was, “I don’t want this!”  I still don’t want it, but it is something I can live with.

      I don’t always use the disabled placard when I feel energetic.  I see that as a personal choice, but on the days when I am dragging it is a blessing.   By the same token, I need glasses for reading and sometimes driving if it is late in the day.  Do they label me as “disabled”?  Maybe I would have seen it that way at one time, now they are just a part of who I am.  I don’t think twice when I see others with glasses or walkers or wheelchairs or oxygen.  Not now.  Acceptance takes time, but it can come if we let it.

    • #28893
      David Ota
      Participant

      Disability Milestones.  The indignities keep coming.  I must say the concept of a Disability Milestones is a new concept.  I have used “Milestone” in my previous life as, 1st Job, 1st Car, 1st Marriage (and last hopefully), Kids, Home ownership…  Signs that I was expanding my life, my independence and freedom.

      O2 tank, Handicap Placard, Wheelchairs, Work from Home, FMLA…  These markers are opposite of what I thought of as Milestones, and yet they are like the Brady Bunch to Boomers, common touchstones to the IPF crew.

      I think this forum is helpful, and local support groups are helpful.  Knowing you’re not in this alone, sharing your hard fought wisdom, asking questions of real people who are farther along this journey.  I am grateful for the IPF and Lung Transplant patients that took the time to answer my questions.  10 years ago, when I was 1st diagnosed with IPF, I don’t think this forum existed.  I certainly felt my wife and I were in the fight alone.

      I think Karen is correct, time helps you accept this new you.

       

    • #28904
      Christie
      Moderator

      Thank you all for sharing. As a caregiver it was hard to watch my mom go through that knowing the that there wasnt anything I could say to make it better. As usual, platitudes were useless. But I did what I could. Showed up. And if anyone needs to hear this, I never once felt like she was a burden to me… To claim the old adage, “she’s not heavy, she’s my mama.”

      Acceptance is hard, especially if you’re used to being independent, or feel self-made, as Sam said. The ego, our pride, has opinions about chronic illness that can’t be ignored. While I know it’s not the same at all, I have experienced these feelings at times in my own life when I suffered a serious injury (x2). Having your independance and mobility taken is one thing, but the uncertainty of the long term outcomes and progression will wreak havoc on the mind. I don’t know how to make easier other than time and talking… which is why I’m glad to be a a part of this forum 🙂

    • #28950
      Randy
      Participant

      Hello everyone. Its been a little while since I have written in but reading today’s topic and how everyone deals with it has been a God send. I thought maybe I was the only one who thought the way everyone else is dealing. I was diagnois in March of 2020 with IPF. I have been on 24/7 oxygen every since. By the time I was diagnoised, I had already lost one lung. Found that out when they went to take xrays and found it wasn’t there and the diagram is up in my chest. You talk about being shocked and not knowing anything about this disease at all. Like Sam had said he worked his whole life and did let things slow him down. I am also 72 and this not being able to do what I used to do is dishearting and makes you feel useless. All you can do is do what you can. My home concentrator is maxed out and the inogen is on 6. To all the dad’s and grandfather’s out there, Happy Father’s Day.

    • #28989
      William E. Shotts
      Participant

      To you my fellow travelers on this uncertain and scary journey we call IPF I say thank you for your stories, they help me to deal with the issues I face.  I am a 73 year old who was diagnosed with IPF in October 2020.  Until then I was very active in my business as well as numerous outside activities.  I live in Colorado at an elevation of 7700′.  I have climbed and hiked numerous mountains over the past several years including some over 14,000′.  I also enjoyed running 5k/10k races as well as playing golf several times a week. Also, I am the main caregiver for my spouse who has late stage Parkinson’s. I am also a Vietnam veteran with documented agent orange exposure.

      You can imagine my shock at being told I had IPF after suffering shortness of breath that put me in the hospital for tests.  The physicians at National Jewish in Denver have been great in getting me started on treatment with OFEV. Dealing with the side effects of the medication, while manageable, are challenging.

      I am not bitter about my situation however I will admit to asking “why me” regularly. During those times I remind myself that there are those of you that have a much more difficult situation than I.  Many of you like me planned for a comfortable retirement with travel and relaxation.  That has not been the reality for me.  I am reminded by my close personal friends that God has a plan in all things.  I believe that but at the same time I question what could that plan possibly be?

      Please keep the posts coming with your personal insights on how you deal with our common situation.  They are of great benefit to me.  I will keep all of you in my prayers and ask that you remember me as well.

      God Bless!

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