Relapsing Polychondritis

Relapsing Polychondritis
What is Relapsing Polychondritis (RP)?

Sunday, September 22, 2019

Where to Find Help



But you don’t look sick…… It is really meant as a complement I suppose. Invisible diseases? Why do they call them that? When do you look like a disease?  They don’t know how much under-eye cover up I’ve had to use to cover the purplish shades around my eyes from the chemotherapeutic drugs, or the spots on my face from my inability to tan because of severe medication reactions. Or the most covering base, and the eye shadow shading to bring out my shrunken eyes. The rounded moon face and weight to your middle from prednisone. To be honest, it really is hard to find what to say to someone with an illness that will likely take their life. 



Earlier in the year a dear friend stopped by one day with some new makeup she was selling and said we needed a little fun, play makeup time. She showed me how to hide the deep hallows I was getting around my eyes. Here I was 64 years old and playing with new makeup. It was fun. She could feel my need to not look sick and followed the call. I am faking being well. That is the plan.

The children all told me to start a blog to help others in their journeys with this one-in-a-million or (3-to-5-in-a-million) disease. (I’ve seen it described both ways). I really think that there are many more of us in the world with the disease, but the doctors just don’t know about it to diagnosis it.
In my research for information on RP I came across a video by Debby Brown. I love this woman!! 

    • She has a great since of humor
    • She is a quilter
    • She has the very same, strange issues that I have
    • Her advice is awesome
    • She talked about a Facebook group for RP.
    Talk about making my life a lot better. I found that Facebook group and realized that RP has brought together some of the most incredible people. This group has taught me far more than my own Rheumy doctor has and how to take the best care of myself. We are from all around the world yet so very close in spirit. 

    Check out different FaceBook pages for:


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