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How Do You Cope?

Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?

  1. I journal to get all my feelings and frustration out.
    I also love music and since I'm a San Antonio Blues Society member I volunteer for our monthly Blues Jam. It's a joy and great stress relief to have an afternoon with great musician friends and awesome music while also enjoying being outside with fresh air and sunshine ! 🎶

    1. Thank you for sharing. Journaling helps me, too, as it is something that can be done in so any ways. I sometimes write encouraging messages to myself or even just lists of things I have gotten past...also affirmations and gratitude lists go into my journal. I used to throw out journals, out of shame, but now give myself a lot of compassion, and even inner applause for my honestly with myself.

      The Jazz group sounds super!! I lived in San Antonio for 9 years along my way and know how nice Springtime can be there! ENJOY!

      Gina Miller Team Member

  2. I often focus on mindfulness and meditation. I try to journal frequently, but I’m terrible about being consistent with it.

    1. thanks so much for sharing. Finding consistency can be hard. I used to journal much more, but then life got busier. Also, I think that I got frustrated by how slow I write compared to how fast I can type. I know some people who have started a digital journal and others who journal via voice memos instead. Maybe finding a different avenue will help? Wishing you a peaceful day, Jessica H (, team member)

  3. Certainly, here are five concise tips for coping with a rare disease:

    Consult a specialist for tailored care and guidance.
    Join support groups to connect with others facing similar challenges.
    Maintain a health journal to track symptoms and treatments.
    Practice stress management techniques for emotional well-being.
    Stay informed about your condition and available resources for assistance.

    1. Thank you for sharing these 5 things that we can do to be proactive in our care. For me, I have found that stress management seems to continually rise to the top of my list. With stress, I often find myself wasting both time and energy, making it harder to practice the rest. It felt good to be reminded that my time spent meditation and journaling is being well spent.

      Smiles and happy wishes,
      Gina Miller, Team Member

    2. Thank you for sharing. Is there anything that would make it all easier to cope?

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