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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?

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    1. I was recently diagnosed with Addison's Disease and CIDP (Chronic Inflammatory Demyelinating Polyneuritis) I also started having seizures at 58 years of age. I have had to make a lot of changes due to CIDP. I can't turn my head and look behind me. I have to stop, turn around and then look. My balance is awful. I have torn apart my skin in several places and broken my ankle. I believe the Addison's causes excessive bruising which has been a problem with me for years. I just try and notice when I get a bruise or cut. I have had cellulitis twice this year and never before. I'm 69 years old. I have other diagnoses, like insomnia (used to have Narcolepsy) . I try to be as stresss free as possible. I take breaks when I am cleaning or putting things away, which I have never done before. I see an endocrinologist next week and plan to ask a lot of questions.

      1. Hi , wishing you lots of luck and answers to your questions. Please keep in touch and let us know how it goes. - Warmly, Donna (team member)

      2. keep us posted and make sure he answers your questions and takes you seriously. Otherwise find a new one! Good luck and hope you have more wonderful days than icky ones!

    2. I try to stay positive, and do things that keep me moving. Volunteering is a good way to focus on something that I can do to help others, even if I can no longer do as much physically as I used to.

      1. , living in gratitude, even when we face great challenges is difficult, but it is rewarding, and an uplifting practice. Volunteering is awesome! One of my favorites is visiting one of our local nursing homes. They allow people (with a little training) help to feed those who can't eat on their own, also to help with activities, or just to visit with the residents. What kinds of things are your favorite volunteer activities? -Warmly, Donna (team member)

    3. Thanks for sharing with us, . It sounds like you have had to endure a lot of difficult symptoms related to your disease. I find it so inspiring that you not only continue to perform and do what you love but have also found a way to incorporate it into how you cope. We are glad you are here.
      Warmly, Corene (team member)

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