Resume Regular Programming

I’ve been my own hero for the last 2 weeks. I was at Mayo most of last week, and had to return on Monday for several days. I had labs, imaging, radioactive tests, girl tests, bone density, eye electrodes. And I have been so beat up that there were times I thought I would not be able to put one foot in front of the other. I’m not sure what is left – but I’m sure they will think of something when I return in 2 weeks.

When I got the results- some were pretty good – some were not so hot, and some were right down the middle. After I catch up on sleep – I have to get back to living my life. I have to walk, bike, yoga, Tai Chi and most importantly- play with my family. I  have to find new ways to achieve my goals- as I have developed some impediments  But – I know I can do that! ( Does anyone know where I can find a munchkin sized indoor exercise bike)?

One of the hardest parts of living with a chronic, rare disease is overcoming- or learning ways to tackle the challenges we face. Climbing the mountain often means one step up – 2 steps back.  Maybe we will skip that mountain top and just aim for the first ledge and call it a win! It’s the little things.

I hope you realize that YOU are your own hero too?

We are HEROS everywhere. Everyday HEROS! Just keep on doing what you can best do. Even if that means napping all day just to have energy to take baby steps the following day.

Next up – Back to regular programming – more patient profiles.

if you would like to be profiled – please PM me and let me know.






  • Laurie Posted May 10, 2018 7:42 am

    Love you little buddy! Thank you for sharing❤️

    • mm
      Carol Miletti Posted May 10, 2018 7:55 pm
  • Betty Filippelli Gordon Posted May 13, 2018 10:05 pm

    I bought a small home exercise bike on line from Dick’s sporting goods. It is collapsible (though I cannot lift it) . Amazon also carried it and wills end someone to your home to assemble it for another $100.

    • mm
      Carol Miletti Posted May 14, 2018 2:15 am

      Betty- what brand is it? Thanks for the tip

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