This topic contains 12 replies, has 5 voices, and was last updated by  Brittany Foster 4 months, 1 week ago.

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  • #16643
     Kathleen Sheffer 
    Participant

    Last night my friend, Alysha, passed away. She was at home on hospice surrounded by family. Knowing she won’t suffer any longer comes as a relief to me.

    While carpooling to Stanford for our respective appointments, I was blessed to learn from Alysha’s perspective on life and illness. Throughout her 20’s she fought stage IV breast cancer that spread to her lungs, liver, and brain. Alysha recognized the ways cancer had changed the course of her life, and readily pointed out that in many ways it had changed for the better.

    She told me that if cancer hadn’t come into her life she probably wouldn’t have chosen to eat healthy and practice yoga. She imagined she would have been more of a party girl, following her family history of alcoholism. Her positivity was a wake-up call to me, boiling over with frustration at the time.

    I hate cancer and I hate PH. But people who have these diseases are capable of choosing to let them change their lives for the better. Alysha showed me that is possible.

    How has PH changed your life in a positive way?

    Brittany wrote last month about the value she brings to her relationships. I’m essentially echoing her here because the first thing that comes to my mind is how PH has impacted my relationships.

    PH helped shape and clarify all of my relationships. Furthermore, many people are in my life only because of my PH diagnosis. I wouldn’t give up my PHriends for anything, including perfect health.

    I’m grateful for the empathy I have as a result of growing up with chronic illness. My friendship with Alysha might never have happened if we weren’t both fighting terminal diseases. She was able to talk to me about things that other people in her life didn’t understand. That’s a special gift that the disease gave me.

    Can you identify any gifts PH has given you?

  • #16649
     Libby 
    Participant

    Well, I’ve always had heart and lung problems and even keenly aware of how short life is. To me “life is short” isn’t just a cliche, its my life. I have always been motivated to help people and at 25 years old I’ve done 3 years of counseling drug addicts and now 1.5 years parenting foster kids. I honestly do not think I would be motivated to do these things if it wasn’t for my health issues. But I grasped real quick that life isn’t just about making money, getting the next promotion or going out partying, its about investing in people. I also think its kept me out of trouble in my teens because I didn’t want to waste time doing silly things I might regret later. In some ways my knowledge that life is short seemed to separate me from my peers- they were, and still are clueless – but overall I am grateful. I am also so grateful and more apprecative of my time with my husband. I hate to think he may be a widow som day but I am so grateful I found him so young!

    • This reply was modified 4 months, 2 weeks ago by  Libby.
    • #16653
       Kathleen Sheffer 
      Participant

      This really resonates with me, Libby. Thank you for sharing the ways you have chosen to make an impact in your life, however short it may be. I’m hoping we outlive all the clueless party-goers! I, too, worry about leaving my partner, but he assures me that any time with me is a gift. That’s certainly how I feel about my friends with chronic illness so I try to be satisfied with that answer.

      What drew you to counseling? This sounds like an amazing way to share your wisdom with others. What do you enjoy about it most, and are there aspects of your work that are particularly challenging? Do you feel like PH has given you extra tools to weather those challenges or does the disease itself create some challenges?

    • #16661
       Brittany Foster 
      Keymaster

      Libby,
      you are definitely making a huge impact on those around you and those that you care about! That is always something that drives me to keep pushing forward and forces me to recognize my strength is thinking about all the younger generations with the conditions that I have and knowing that the research I participate in, the procedures I go through, and the surgeries I endure will hopefully help them get even more information so other kids that are born with the same type thing don’t have to wait around as long as I have for a diagnosis. These things need to be recognized. Connections with people and especially parents of children with medical conditions has really helped me a lot and helped me to share my own stories and perspectives.

  • #16657
     VK 
    Participant

    My sarcastic answer could be “of course my life’s changed in a positive way, it’s shorter!”, but I actually did find a reason to be grateful: PH (and the underlying problems that caused mine) gave me an increased appreciation for science and health. My graduate work revolves around using social media to help find factors behind rare idiopathic (of unknown cause) diseases.

    • #16658
       Kathleen Sheffer 
      Participant

      That’s a great answer! Thank you for humoring me and fighting through the cynicism (I don’t manage to all the time). Please share links to your research when it is published. Sounds like an amazing project!

    • #16662
       Brittany Foster 
      Keymaster

      VK,
      I know what you mean. If I had the energy and stamina (and no more brain fog) I would totally go back to school to be some type of science major and do research. I have been fascinated by the area of genetics and all the genetic studies they are able to do now, especially identifying genes and doing testing on embryos to see if they code for that gene. It’s truly amazing all that science can do and it gets super creepy sometimes too with all the advances. I think “what’s next?” Will robots one day be taking over the surgeon’s positions? So COOL but mind blowing to think about!

      • #16674
         VK 
        Participant

        Thank you @brittany-foster and @kathleen-sheffer for your feedback. I started out studying genes and stuff back in the day but years later my graduate research is patient-centered — I’m not finding out what gene we can target/fix to cure the disease but instead what patients (like us) want to help manage their disease. As a fellow sufferer of incurable chronic disease I really don’t care about what gene they can kick because the damage is already done.

        I will consider posting links to any publications we make of our research once it’s published this coming year. I’ll probably make a new account for that stuff because I don’t want to conflict myself as a patient (or connect my real name to someone who regularly complains about family).

      • #16679
         Brittany Foster 
        Keymaster

        Looking forward to reading about your research VK! I’m sure you have put so much work into this and it’s even better that you have a personal connection to all of it. It makes the passion for what you are doing that much stronger.

  • #16667
     Carol Volckmann 
    Participant

    Thank you all for reminding me there are positive parts of life for having a chronic life threatening disease like PAH. The most positve things in my life living with PAH are the wonderful relationships that have formed because of disease – they are more open, honest and caring unconditionally. The first time I experienced this was when my mother was dying of cancer. Because og her cancer our relationship became so much closer, so much more open and honest – it was a gift! I said to her one day “…this cancer is like a rose, it needs some ‘sh..’ to make the rose bloom…” though she would never say that word she smiled and said she felt the same way. And is now my life and I would not trade it. The open,honest and loving relations I enjoy today are truly a gift.

    • #16669
       Brittany Foster 
      Keymaster

      What a great quote that you told your mom! I’m sure that brightened her day and really made her think about the truth in that. I find it so easy to connect with others and be honest with others in a chronic illness community like this one. Unconditional love and relationships are hard to find, but they ARE out there and it really makes you recognize the ones who have always been there FOR you and WITH you. It’s a true “test” to many relationships but it makes us find the ones that matter the most to us and to NOT settle for less because life is just too short.

  • #16684
     Libby 
    Participant

    Hi Kathleen, I honestly don’t know what drew me to substance abuse counseling other than my love for psychology. However I got my degree very young and began counseling at 19. Truth be told, i was too immature and made many mistakes. My age amogst street savvy drug addicta made me a little fish in a tank of sharks and after three years of struggling for respect in my occupation, I gave it up and switched to foster parenting which is a much better fit! Many people assume at my age that I cannot understand tradgedy because I am too young to have experienced it. To have all these health issues, it sort of “qualifies” me in their eyes to understand them a little, if that makes sense.

    • #16695
       Brittany Foster 
      Keymaster

      Libby,
      I know this message is directed at Kathleen but I TOTALLY understand what you’re talking about here. I think that all of my health conditions and the sympathy and empathy that I have for people helps me connect to others in a way that most people have a hard time doing. I look at the “underlying cause” for things a lot. Especially when I was a teacher, it made me stop and really think about where their actions were coming from and WHY they were acting the way they were instead of just using discipline or taking “points” away from bad behavior. There’s always a story that isn’t told and that’s something that my life has taught me.

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