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Time and patience have brought me a long way. I have a sense of peace about things that is hard to explain sometimes.
I try my best to own the pain so it does not own me.
I kept my personal bankruptcy, which resulted from our insurance company refusing to pay for supplies and other things a secret because I was so incredibly embarrassed and mortified about it. But the secret is out. I am not longer embarrassed or mortified, I am mad as hell.
Just as every person is different with their talents and gifts, so are those with Epidermolysis Bullosa. Everyone is different. Respect. Listen. Care.
Until there is a full-fledge cure, bandages are key and nobody can afford this stuff. I don’t even dare look at the bill each month. I know it’s in the thousands. THOUSANDS! It’s insane.
It’s so easy to judge myself, but the truth is, at the time I did the best I could with the little information I had and little to no bandages available to me.
Love & Light,
