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    • #25880
      Colleen Steele

      My column this week focuses on how obsessed with my son’s health I have HAD to be over the years. I shared how misunderstood that need can be from those who can’t relate to living with a life-threatening disease.

      Can you relate to the feeling of being obsessed with survival? How far does your obsession go? Do you diligently research, discuss and explain your health to others, worry about symptoms or decline that has happened yet? Share your experiences with medical obsession.

    • #25914
      Jen Cueva

      Well done, @colleensteele. I think too often that we do find that others may believe that we are obsessed with our health. They do not understand that we have to be. We, the patients, and caregivers, have to be proactive as we advocate.

      I think, at times, this can be over obsessive if we stress ourselves out about any little thing. But who is to say that that one little thing to one may be a sign of progression or other changes. I find that I am either overly concerned about changes or not taking them seriously. Does anyone else feel that that teether between the two?

      I am grateful that you are sharing these stories. I am inspired and learn from them.

    • #25923
      Colleen Steele

      @jenc I have always worried that the one time I dismiss something as nothing to worry about will be the one time I should have been more pro-active. I have never been one to call the doctor over everything but I chart things, big or small, as they happen. They way if symptoms snow ball we can maybe pin-point the first clue that something changed.

      I think the attention to self-care that PH patients and caregivers must focus on daily might come across as obsessive to others. Thank God I am beyond worrying about what others think, especially when it comes to caring for my son.

    • #25943
      Jen Cueva

      @colleensteele that is a great tip to stay proactive and document things. I also feel at times every little thing I try and make a note, so if I need to let the doctor know. I remember when my daughter was born, I was the mom who called the pediatrician office with every little thing. I was learning, and after about the age of 3, I was not quite as bad-hehe.

      You make an excellent point about not worrying what others think. I think that is the best mindset to have when you are a patient or caregiver. Otherwise, your health or your loved ones could be compromised. Did you ever worry about this? Or have you also been one to do what is needed for yourself and your family regardless of others?

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