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.
So glad we found each other!
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