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    • #15314
      Kathleen Sheffer
      Participant

      How do you spend your time when you don’t know how much time you have left?

      Living with a single-digit life expectancy for the past 19 years (haha) I’ve often wondered if I’m making good use of my time. When I was struggling in college I wondered why I was even working toward a degree if the odds were stacked against me actually completing it.

      I know that I would live differently if I knew how much time I had left. For instance, if I knew I had months to live, I would focus on short-term goals and completion rather than a 5-year business plan. I would move in with my boyfriend and not worry that we might not get along after a while.

      But nobody knows how much time they have left. Those of us with chronic illness have the advantage of recognizing our own mortality. Many of us spend time thinking about how it would be if we died this month or this year. We therefore can act with more intention.

      I probably “treat myself” more often than most of my friends. I never know what tomorrow will bring, so if it makes me feel good now, I’m buying it (looking at you, buttery croissant and cute pair of earrings). At the same time, I have to accept that I may live many many more years than my family, my doctors or I expected, and so I should maybe figure out what a 401K is (just kidding, I can’t have one and retain my insurance). Whoops.

      Reflecting on this dilemma today, I decided I need to strike a balance between my long-term decisions and short-term decisions. “What would I do in this situation if I knew I would live to be 85?” And then, “What would I do if I knew I would die this year?” Maybe the answer is somewhere in the middle. I think having this thought process is important. I can’t live in fear that I am going to die very soon. However, I make better choices when I consider my limitations. Knowing that my life will stop suddenly one day, I think more about opportunity cost, about what I value in life, and about the legacy I’m creating.

      Mostly it makes me want to be nicer to other humans. If this is the last thing I ever type, I want it to be loving. I’m sending love out to all those reading this. If my 10 PM musings resonate with you at all, please comment and share. I’d love to hear how you cope with terminal illness and/or the human condition.

    • #15426
      VK
      Participant

      I have to admit I’ve done some stupid things with respect to having a terminal illness, including possibly wasting 7+ years of my life on an advanced graduate degree. I realize now that I could have done normal human things like dating, marriage, etc. and even though I’d be earning 25% less, still have normal human happiness without wasting time on school.

      This is going to sound morbid, but I have found it’s time to embrace the fact I’ll be “going home” sooner than most people my age.

      • #15428
        Brittany Foster
        Keymaster

        VK,
        That’s definitely a hard thing to accept. I truly believe that nothing is a waste that we do in life (at least thats how I feel). I felt the frustration that went along with going through 5 years of college to having to leave the job I worked so hard there. I’m sure you have learned so many skills and gained so much knowledge from your time there. All of that holds value , it’s not just about the money value. It’s not morbid to he realistic about our illness and life expectancy, but it’s important to make room in your life for the things that make you happy and it’s never too late to discover or rediscover those things ! Illness makes me look at all things through a different eye.

    • #15433
      Randolph Reynolds
      Participant

      Kathleen,
      I was touched by your commentary. I thought I was alone in such thinking but my view of this illness is that there are things I can do. My diagnosis came exactly four years ago. At first my PAH didn’t seem to keep me from taking cruises and visiting places my wife and I wanted experience. I’m glad we did that for when things got worse about a year ago and I started on Remodulin the process got more difficult. Now I am aware of a longer life span but at least I know what I am limited to doing. I don’t understand why it seems more women are suffering from this disease than men? I wish you well despite the chronic nature of your illness.

      • #15434
        Brittany Foster
        Keymaster

        Randolph,
        I’m glad you were able to have those experiences when you could and got to go on cruises and travel! Those must be some amazing memories. It’s definitely a process and sometimes a grieving process to think about the things you can’t do anymore. But I’m glad you’re finding the things you can do. Vacations may be possible for some of us but they certainly require a lot of modifications and accomodations. And for me, almost an entire car for all my medical equipment hahahaha! Wishing you the best and a great start to the New Year

    • #15518
      ronald cole
      Participant

      Greetings,
      I just finished my first real bout with pneumonia. It was difficult, to say the least.
      My PH is a day to day thing. If I feel “THAT WAY” I know it right away, those are my PH days. if not, I live like it’s not part of my life. When I am having a PH day, it is very difficult even to do the smallest things. I live one day at a time as I never know what is going to be when I wake up. I am going to have back injections for Pain in 10 days, after that I will have breast Cancer Surgery, can you believe a man with Breast Cancer. I have a lump on my left breast, under the skin, could have been Melanoma, but all the test showed what it is so I just show up, go to sleep, they cut it out, I go home. Thanks for Uber. If I thought it would be like this, I would have asked my Mom to be a baby girl. I just wanted to say hi to everyone, I just have not been too social lately but I think of all of you, my friends on my best site in the Universe, I love it here, make me feel understood and sad also, not for me but all of you. I will keep you posted, God Bless You all. Ron

      • #15523
        Kathleen Sheffer
        Participant

        Ron, I’m so sorry you have had pneumonia as well as cancer surgery! You can’t catch a break. We are thinking of you, too, and hope you are able to get some good rest in the coming weeks. Whenever I am sick with a cold or pneumonia it makes me grateful for my relative health when I am not sick. Hopefully you will start to feel better and appreciate more energy. Go easy on yourself, though. You are such a good person and doing your best! Hugs, Kathleen.

      • #15535
        Brittany Foster
        Keymaster

        Ron,
        I am so glad to hear from you but I’m sad for everything you are currently dealing with. Thank you for coming onto this site and keeping us updated on what has been going on. I’m sorry you have had pneumonia and also are going to be going through a surgery. I know from personal experience that even a surgery that may seem small to some is actually a huge deal for those of us with PH or a co existing condition. You are certainly doing all you can and are getting this addressed and taken care of right away and I hope it all goes as smooth as possible for you. Please continue to keep us updated and try to keep that “day to day” mentality. It helps with getting through the worst of the days to just take it one hour at a time sometimes. We are always here for you so reach out any time. Thinking of you !!!

    • #15541
      Adele
      Participant

      I appreciate all the letters in this Forum. Thank you.
      After many long years with a PAH, and with good understanding how to take care of myself, I realize now, and my body tells me that I will come to the end of this long,journey.
      I have processed this knowledge and made peace with that, however I have not,given up on myself, neither medically or emotionally, concerning the precious time I may have left still. My deep faith in the Lord, my desire to be fully in the world, and my deep,appreciation of life, fills me with the courage to live,each day as fully as I am able. I write, I think, I pray, and try to give to others in love, a,little of my, individual gifts, given to me by our Creator.
      We must live our lives with meaning and commitment, and despite our,challenges and destiny, we need to reach out to others and show that we care.

      • #15544
        Brittany Foster
        Keymaster

        Adele
        Finding meaning and the joys in life that make you the happiest will certainly give that drive to live. I know there will always be times when nagetive thoughts seem to settle in, but I like you have your own plans to help you escape and forget about things for awhile. Please continue to update us and know thay we are here 5o support you.

    • #15837
      Libby
      Participant

      This topic is old, but resonates with me deeply so I felt the need to respond. I’ve had severe congenital heart defects my whole life and wasn’t diagnosed with PAH until 2 years ago. My heart issues have always made me keenly aware of my possible short life span, but now with PAH, it often seems sealed in stone. I go through phases where I don’t think about it for months, that I’m just a regular person, other times I think of it daily and always feel so selfish for it.

      For me, I have always wanted to help people. PAH has made it so I cannot have children (I’m 24 years old, been married 4 years) so my husband and I are foster parents. We have considered adoption, but sometimes I worry I will leave my husband a single parent if we do that. I’m also trying to be more active in my church, as well as spend plenty of time with my family and spouse. In a world that feels so materialistic, it feels suffocating when we are so aware of our morality. I try not to be materialistic but still get caught up in it sometimes.

      One thing I have found is how unprepared people are to deal with death. Our lives are filled with violence on the news, movies, ect. But when it really comes down to thinking that I may die early, my friends and family, even aquaintances, literally change the subject. I completely understand that it is hard for them to accept, I am not trying to be unsympathetic. But if they cannot cope and are willing to talk about it, it makes it feel extra lonely.

      • #15839
        Brittany Foster
        Keymaster

        Hi Libby
        I truly get every single thing that you are saying and you are strong for opening up about all of that. I’m so sorry that you have gone through so much in your life and I believe that’s why you’re the type of person you are with wanting to care for everyone else because you know what it’s like to feel a whole bunch of difficult feelings both physically and mentally. I can understand your struggles especially as someone who is around the same age as you. I think that it’s great that you and your husband are fostering children and that you are thinking about adoption. If I were to suggest something, I would try to have those honest conversations with your husband about your fears with adoption. It has always been hard for me to talk about those fears with my boyfriend but when I opened Up to him honestly, I found that his fears are very similar to my own. Being honest and vulnerable about it helped to relieve some of that burden I felt like I was holding and it felt freeing in a way to get all my feelings out there. I know it’s hard for others to hear about mortality especially when they love and care about you so much. Death certainly isn’t easy for anyone. It really helps me when I have a few people to talk about this with. Whether it’s my therapist, mom, or my boyfriend or a close friend. You always have this forum too!!!! This is a great place for support.

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