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Where do you find support?

Who supports you in a meaningful way? What does their support look like? As you have moved along your rare disease journey, has the type of support you need changed over time? Where did you find "your people"?

  1. Gina,
    Thank-you for your consistent positive feed back despite your own issues with your pain syndrome. I really do feel like exercise is key, when we can do it. Really illness can become a burden yet also a blessing. Let your light shine as you cope with challenge! Blessings, Mike

    1. Hi ,
      Thank you, too, for your lovely message.
      I agree on exercise being so very important. What frustrated me when the facet syndrome flared so badly was that I had recently returned to exercise beyond walking my dog. Had begun to swim again and even go on some 'easy rated' hikes with other older women.
      The good news is that I ended up at a chiropractic/rehab center and begin rehab next week -essentially exercise instruction specific to my needs - assuming it will be core muscles work.

      Smiles, as I open up my light to shine a brighter after its being buoyed from our interactions here.
      Thank you, and many blessings back to you.

      Gina Miller
      Team Member

  2. Fraya my wife is a great support to me in my battle. I also have a walking buddy named Gil, we also go to dinner with our wives together. My on-line Tai Chi, Yoga and other live live classes has folks who offer some support. A massage therapist, my Acupuncturist and Physical Therapist all provide a type of support for my challenges. The main way I control my P.S.P. Is through exercise. These are all folks who help me with that approach. I am blessed. Mike

    1. Hi ,
      Nice to see your sharing more here about what supports you have in place to help you through your challenges with P.S.P.

      I love the emphasis on exercise and body treatments, especially as I am moving through residual pain from a facet syndrome pain crisis from 9 days back now. I was so glad to be able to get seen at a very good chiro and rebab clinic within a few days and to have diagnostic pain block shots set up for 9 days from now. They will help my pan doc figure out which nerves need ablation (super heating).

      Love your /walking buddy' plan, and regular nights out with another couple, too!!

      Keep up the good self-care work!
      Gina Miller,
      Team Member

  3. With family, medical providers, counselor, medical journals, my own journal, church, prayers, emotional release.

    1. Thank you for sharing. Sounds like you are doing a great job of finding support across many resources.
      Keep up the good work!

      Gina Miller
      Team Member

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