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    • #21478

      Aloha!

      I am still enjoying the beautiful Hawaiian Islands and soaking up every ounce of sunlight, breath of ocean air, fresh cup of coffee and lots of seafood. I am filled with gratitude and just so thankful that I’ve been able to come here, despite living with idiopathic pulmonary fibrosis (IPF).

      As we were driving around the island of Oahu today, my friends and I stopped in at various lookout points to see the scenery and beautiful ocean views. Understandably, lots of other tourists are here too and sometimes the parking lots can be quite full, requiring a lot of walking for me to reach a destination. One of the friends with me today asked if I have (or brought) a disability parking spot, and it got me thinking. I hate to admit it, but I’ve not yet applied for this, despite getting short of breath when walking long distances without my oxygen. It is on my to do list someday soon, but here’s the thing: there are still many days that I feel so good, I don’t identify with being disabled or having a disability.

       

      Sure, a disability parking pass would make things a lot easier for me sometimes so is the answer that I obtain one and just use it only during more difficult days (ie. extreme cold/hot temperatures)? It might be. Then I got thinking about many of our wonderful forum members and wondered if any of you identify with being disabled since your IPF/PF diagnosis? I still, thankfully, have many moments (such as the photo above) where I just feel like I don’t “fit the mould” of having a disability, despite my lungs functioning so poorly compared to others my age.

      I’m curious: how many of you would say you identify with a disability?

      Why or why not?

      Do you have a disability parking pass, or do you plan on using one in the future?

      Please share your thoughts!

    • #21534
      Jim
      Participant

      I do not self-identify as disabled but I did obtain a handicap parking placard that I use only when I cannot find a space within a reasonable (for me) walking distance.

      • #21548

        Makes sense Jim, that is what I’ll do with mine when I obtain it too. Walking too far is getting tiring! Thanks for sharing your thoughts.
        Charlene.

    • #21536
      Rose Sottilo
      Participant

      I do identify as disabled. I’m over 3 years into PF, with Cardiac issues too. I use my parking placard. I live in South Texas and the heat combined with the walking causes angina episodes. I hate having to stop to rest and let the nitroglycerin tablets do their magic so I park close. I try to get things done early in the day before it heats up.  I accept the offer for help from strangers. (So many people are happy to help) That was hard for me to accept, but so glad I did.

      I am physically active and go to the gym at hospital 3 times a week. Lots of fans and a/c. They hook me up to monitor my heart and I get a chance to feel strong, healthy, and “normal”.  Smooches y’all 💋

      • #21549

        Hi Rose,

        Thanks for writing to us about this important topic – I am so glad to hear others are able to help you when you’re out and need assistance. It is hard to ask for, I agree, but ultimately so important. Good for you to be working out at the hospital, that is great… and way easier said than done. Wishing you the best and thanks for sharing.
        Charlene.

    • #21547
      Joan E. Lynch
      Participant

      I do not think of myself as being disabled.  However, my daughter-in-law said I should get a handicap placard.  When I am with my family, they let me off at the door usually.  When I am alone I try to park close.  I am 87 so am battling old age as well as pulmonary fibrosis.  I was formally diagnosed in November 2018 but back in 2014 I was having some breathing problems they said I had what looked like ground glass in my lung.  However, after that I seemed to be fine except for a dry cough.  I am on oxygen at night to protect my heart but do pretty well during the day.  I am thinking of getting a handicap placard and use only when needed.

    • #21550

      Hi Joan,

      Thanks for writing and sharing your thoughts on this topic. Glad your family is supportive, and you’re managing okay when you’re out on your own. A disability parking pass makes all the difference I hear, although, I am having a hard time filling out the paperwork to get one. Just tough to accept I guess! Glad your doctor was proactive to put you on oxygen to protect your heart at night time, that is important. I use my supplemental 02 at night as well. Take good care!
      Charlene.

    • #21585
      John Kane
      Participant

      I also do not consider myself disabled, but I believe that I am early on in this disease. I did get a handicap tag but only use it if I have to walk a longer distance. I passed up a handicapped spot at the grocery store the other day. The gentleman who did take the spot was in far more need than me.

    • #21590
      Richard Bowden
      Participant

      I am hesitant to fill out the paperwork for a placard.  I don’t feel like I’m disabled enough.  My dad and mother ask me periodically if I’ve completed the paperwork.  I don’t really think I would qualify for one nor would feel comfortable using it because of my activity.  Don’t get me wrong, I would love the parking perks.  However, I’d rather plan to take the extra time and walk at my own pace.  You know I feel like if I take that pass, psychologically I think it will play on my mind that I am giving up on pushing through this disease.  As far as I know, fibrosis doesn’t get worst for pushing through it.  I’d rather push until I’m bedridden.  But to your question… “Yes, I do identify being disabled. My physical activity is limited compared to others.”

      • #21604

        Hi Richard,

        Thank you so much for sharing your thoughts on this topic – it is nice to hear from someone similar to my age regarding a disability and parking pass. Granted, I wish none of us were having to deal with this cruel disease! Unless a cold, or the weather (extreme heat/cold) are bothering me, I tend not to use or want a parking pass either and prefer to move about my own pace. Although, some days are tough and I wish I have it. It’s funny you mention your parents asking about it, mine always do as well. Continue to stay strong my friend – I think you’re onto something about the psychological impact of this disease and not wanting to accept it, but instead push through it. Hang in there and thanks for writing.
        Charlene.

         

    • #21599
      Suzanne R Brennan
      Participant

      Charlene, I don’t consider myself disabled and yet I did request the right paperwork from my doctor to get a placard. I don’t use it unless I am feeling particularly tired or if it’s really cold, which can affect my breathing. Since I carry my POC with me to the grocery store or other shopping, I can pass up the handicapped spot most of the time but sometimes I am so glad I have it!

      • #21602

        Hi John,

        Thanks for sharing your thoughts on this topic – it is so interesting to hear how different people identify with a disability after being diagnosed with this disease. It is always a good idea to get a disability parking tag, and then use it as you need/want to. Kudos to you for passing up the parking spot, that is good karma: may it come back to benefit you 🙂

        Charlene.

      • #21603

        Hi Suzanne,

        So nice to hear from you, thanks for writing! Like you, I don’t want to identify as having a disability but having the parking pass is so convenient when we’re tired, or having really tough days. Sometimes even with my POC, it is easier to park closer to the door when I am carrying it because I do find it heavy! Appreciate hearing your thoughts, thanks again. Hope you’re doing well…

        Charlene.

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