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    • #35904
      Jen Cueva
      Keymaster

      A lot of people don’t like getting older. But from a chronic illness perspective, many find it exciting and celebratory to get older and surpass one’s life expectancy.

      This isn’t universal, but living with chronic illnesses and disabilities adds a unique lens.

      What are your thoughts on aging?

    • #35919
      Carol Volckmann
      Participant

      Great toptic Jen. My first thought ehen seeing “What are your thoughts on Aging” was … beats the alternative. The more I think about it, for some and maybe even me one day would look at the alternative in a positive light. When I was diagnosed I was in my sixties and my life was full of skiing, sailing, horse-pack trips and many hikes. Given a 3-5 yr life expectancy, I just refused to believe that. At 78 my life is still full just no longer able to do many of the things I thought I would still be able to. Getting older for me is okay. I keep telling folks, I am not old, just getting older. I am not afraid of death, at least not today. I have too much left to do and enjoy. That is where my head is today.

      • #35930
        Jen Cueva
        Keymaster

        Hi @cdvol3gmail-com, I relate to you feeling OK about aging and not afraid of death- today. At times, I feel like, throughout the day, my headspace may fluctuate between being grateful for being here and getting older. But I also miss certain things pre-PH, like you. I’m incredibly blessed and can relate because almost 18 years ago, I was told I had 3-5 years left. Thank God they got that wrong for us both.

        Thanks for sharing your thoughts on this topic, Carol. As I say, I age like fine wine, hehe.

      • #35955
        Colleen Steele
        Keymaster

        @cdvol3gmail-com it sounds like you have a healthy attitude. I think even for those who aren’t living with PH or other illness face to some extent, not being able to do or not doing what they thought they would be doing by a certain age. But hopefully what we all gain from aging is wisdom and to use it towards feeling comfortable with who we have become and how we deal with the circumstances we have been given. It sounds like that is what you are doing!

    • #35945
      Colleen Steele
      Keymaster

      @jenc aging is a mixed bag for Cullen. It’s a blessing because he has beat tremendous odds, and it’s scary, because he has beat tremendous odds. Know what I mean?

      • #35946
        Carol Volckmann
        Participant

        Colleen, you are so right – aging is a mixed bag. Cullen has been through so much and has overcome so much. The anxiety of what else might be around the corner must be a part of this for Cullen and the family. Birthdays I hope are a celebration of life! My prayers and best posible outcomes I am sending your way.

        • #35956
          Colleen Steele
          Keymaster

          Thank you @cdvol3gmail-com! Birthday’s are very much a celebration of life. He will be 23 in November! Amazing considering he was 14 when he received his transplant. I appreciate the kind words you always have for him.

        • #35961
          Carol Volckmann
          Participant

          Good morning Colleen, many years ago I volunteered at Childrens Hospital when I lived in Boston. I worked evenings on the terminal floor and met a young man, Henry. He thrived every day, every moment of his life. Henry taught me more about living than any one soul. He remains in my heart to this day and always will.

          Your Cullen is a very special young man who has seen and continues to thrive through tough moments. He has so much more to teach us, so much more to celebrate! Keep on teaching us Cullen!!!

      • #35974
        Jen Cueva
        Keymaster

        Hi @colleensteele, it certainly does make sense. Cullen has already been through so much at his young age. But he probably continues to be anxious at times about the future. At almost 23, he still is so young and has lots of life left to live. I know that Cullen and the family and close friends make each birthday a big deal. You know, I think everyone should; life is too short. Each day is a gift.

        I agree with Carol; Cullen is an extraordinary young man with so much to teach us and many others. He makes an excellent caregiver, too.

    • #35951
      Aunt Lizzie
      Participant

      Hi Girls – Aging? What’s that.  Sure, I’m nearly 81 years of age, severe PH and a Pacemaker keeping my heart working well, but I still can’t accept that I’m a Geriatric or Older Person etc etc.  I only use the “Older” bit when it’s to my advantage, like when our car broke down in the middle of no-where in a 44 degree C heat.  Kindly person stopped and rang the road service for us and told them we were an elderly couple ‘so don’t forget them’.    Some of my long-time friends are aging badly and that is not easy to see.  I guess my main concern is not to lose a kangaroo in the top paddock – if you know what I mean.   I am about 26 years old from my side of my eyes and try not to use a mirror too often.

      • #35957
        Colleen Steele
        Keymaster

        @auntlizzie I wish I could use, “my main concern is not to lose a kangaroo in the top paddock,” and it make sense but probably not in the state of WA in the USA. I know you are somewhat being serious but put that way made me smile.

        My mom is in her late 80’s and dad his early 90’s and they will make jokes about dreading medical appointments to sit in waiting rooms with “old” people. Age is mind of matter.

      • #35975
        Jen Cueva
        Keymaster

        Hi @auntlizzie, too funny. I know what you mean, but I doubt anyone would have a clue if I used that term on California. LOL

        You sound like you have such a healthy mindset. That’s important. It’s certainly not easy to watch our family and close friends, who have many more concerns as they age.

        Wow, you and I are almost the same age. I have been stuck at age 29 for years, Hehe.

    • #35952
      Debbie Moore
      Participant

      I wasn’t given an expectancy estimation, so I’ve set my own at 20+ years, so birthdays will come and go. It is for certain I will get older. Since going on oxygen I feel like I’ve aged 20 years instead of two.  It could be just the symptoms of this disease.  I think I need to get on some meds for fatigue; that should give me some more energy and make me feel like my old self.

      @cdvol3gmail-com and @jenc I completely agree with missing the pre-PH days.  So I am going to find new things to do.  I joined a gym and am excited.  Pre-PH it would not have been something I would have wanted to do.  Since doing pulmonary rehab, I have the confidence of being able to work out at my pace and do well. I may not have a body that works, but it will be a beautiful body (if I live long enough and exercise every day, all day – oh who am I kidding, I’ll know I tried)! Hee,Hee!

      • #35958
        Colleen Steele
        Keymaster

        @debbie I know PH aged my son. He was a child when diagnosed with PH and he became wise beyond his years. I know this isn’t what you meant when you said you feel like you have aged 20 years instead of two but I think that adults probably experience a bit of mental age advancement as well. Perhaps the older you actually are the harder that mental and physical advancement hits?

        But just like Carol it sounds like you try to keep a positive outlook and that inspires you to do things like join a gym. That is great!

        • #35959
          Debbie Moore
          Participant

          @colleenesteele I understand what you are saying.  I think it is horrible to get this disease at any age, but for children it breaks my heart.  They have to grow up too fast mentally but I would think they become realistic thinkers and wise decision makers.  God has a reason for all that happens.  He has a plan for them to be wise beyond their years.  I’m so thrilled when I hear how well Cullen is doing now.  So now it is time to rejoice for aging!

      • #35976
        Jen Cueva
        Keymaster

        Hi @debbie, I feel like PH has aged me, too. It’s tough to describe, but I know you and others know what I mean. So, you’re not alone.

        I love that you have joined a gym. I was thinking about it, but so far been doing my light workouts at home. That self-confidence is something you should be proud of, my PHriend.

    • #35963
      Barbara A Perry
      Participant

      What’s ageing? It’s a frame of mind. Try not to allow PH to stop you from achieving some of your dreams. Decorate a pumpkin for Halloween. That could put a smile on your face and make you feel like a kid again. It’s fun!

      • #35977
        Jen Cueva
        Keymaster

        Hi, @braysgemstone; your mindset is perfect! I love playing with bubbles; something about that makes me feel like a kid again and smile.

        I hope to get a pumpkin and decorate it. I enjoy doing those things, although my daughter is grown and married.

        Skipping rocks is another childhood hobby many older folks enjoy if they’re near water. Have you done that before?

    • #35964
      Colleen Steele
      Keymaster

      Lovely suggestion @braysgemstone! In all seriousness, I think you are on to something. Doing things that you enjoyed as a kid can still bring you joy. For example: Catch lightening bugs in the summer, color in a coloring book, giggle over something silly with a friend, and as you said…decorate a pumpkin, or Easter eggs or make homemade Christmas ornaments. There are many ways to stay young at heart.

    • #35984
      Brenda Denzler
      Participant

      I had inflammatory breast cancer in 2009. It has a 30-40% five-year survival rate. So…do the math. I’m currently 13 years out and as far as we know, cancer-free. We call these “bonus birthdays.”

      I have a mixed take on aging. On the one hand, I am very grateful for my bonus birthdays. There are so many important things I would have missed, had I died in my late 50s. Like the births of my grandkids. All of my pets that I never would have adopted. Simple joys like the color of autumn leaves and the crocuses blooming in the very, very early spring.

      On the other hand, I have never regained my pre-cancer level of functionality. And in fact, the last 13 years have been marked by a steady, faster-than-normal decline. Part of that is normal aging. But 75% of it is not normal aging. It’s above and beyond what should be normal for me. And I resent that. Greatly. I was given “a” life back, in the face of a deadly diagnosis. But not “my” life.

      Hurricane Ian willing, in a few days I will fly out of NC and land in Boston, where I will have a Level 3 cardio-pulmonary exercise test. Maybe I’ll get info from that test that will help us slow my decline, or maybe even reverse it? I am sublimating a lot of stress about this trip. Wish I could just go into a mild dissociative state and have someone grab me by the hand and lead me around to do whatever I need to do. Alas, that is not an option.

      If I can manage it, I’d like to figure out how to take tap dancing lessons when I get back. 🙂

      • #35986
        Colleen Steele
        Keymaster

        @brendad53 I am grateful for your “bonus birthdays” too and the change to get to know you. Whether you realize it or not you have gained a lot of wisdom from your experiences and a wonderful sense of humor. In my experience you can do a lot of good living with both.

        Oh the weather…it is not at it’s best right now but hopefully Mother Nature will change her mood in time for your appointment. I’m keeping you in my prayers.

        Tap dancing! I don’t know if you are joking or serious but I loved tap dancing as a child. I took ballet and tap…eventually quit ballet but kept the tap shoes. Do remember the show Lawrence Welk? I always watched it with my grandmother and the tap dancers were always my favorite.

        You don’t hear about tap dancing anymore. Have you researched classes at all?

      • #36021
        Aunt Lizzie
        Participant

        Tap dancing?  Now there’s an idea!  A few years ago my Partner and I took up our Local Council’s offer of a free tap dancing lesson for Seniors.  What fun, and we went home nicely exhausted.  Not quite ready for Broadway tho’.  I do have a cousin who is mid-80s and tap dances regularly, with a group who do small performances too – don’t know what she’s like but she’s one of those very fit “oldies” – as we all aspire to being.  Luv to you.

    • #35990
      Randolph Reynolds
      Participant

      I thought Aunt Lizzie’s comments from down under were funny and poignant at the same time.  My wife and I are Lizzie’s age and we share the same sort of symptoms such as, forgetfulness, strange aches and pains, but determined to continue staying active.  Upon the advent of my having to go on full time supplemental oxygen staying active became difficult. When I was 45 I started counting backward but then I actually forgot how old I was.

      However most of the traveling we wanted to do has been done.  We met when we were in our mid ‘20s.  I joked that I saw parts of the world that only an aviator would get to see and she retorted that she had been to places I never saw.  In our 60s and 70s we expanded our world, mostly to Europe.

      Aging is sort of like learning a job or perhaps inventing a new art form.  We force this body to move rather than when younger not giving much thought to whether or not it will sustain us.  I wrote in my little book that this process moves us from a material world to a spiritual world.  In the meantime we enjoy what good moments we have.

      We don’t have Wallabies in our neck of the wood but a heck of a lot of people who act older that we.

      • #36008
        Jen Cueva
        Keymaster

        Hi @ripple76, I do remember that part when reading your book. You make some excellent points, along with your humor. We all should remember to be grateful and enjoy the time we do have. Each day is a precious gift.

        I remind myself of these little things and try to add some humor when I feel I can’t take much more. I’m sure most of you can relate in some sort.

        I hope you and your lovely wife are enjoying each other and doing well, my PHriend.

    • #36010
      Randolph Reynolds
      Participant

      Thank you Jen.  Yes today is a day for me to add humor.  You are a good role model.

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