The stories people share with me about their experiences with the medical world would make your toenails curl. Unfortunately, in the world I live in, I rarely hear the good stories. The stories are usually sad and frightening tales, those that leave me thinking, “there but for the grace of God….”
Many patients blog, using the exercise of translating thoughts to digital characters as a catharsis. Truth is, I’m happy blogging didn’t exist post-my own misdiagnosis because I might have started blogging — and that would have become my catharsis instead of building DiagKNOWsis.org. Had I not built DiagKNOWsis.org, I might not have changed careers to advocacy work! The rest, as they say, yadda yadda.
And then there are the patient-angels. They are few and far between in the blogosphere. But they use their experiences to help others in ways that those of us who aren’t really sick never can. This week I “met” one of these angels and what I already know about her reaction to this post of mine, is that the title of angel will simply embarrass her. That, of course, is not my intent!
Imagine being born with cystic fibrosis thirty years ago. That’s the time I was birthing babies, and had one of my daughters been born with cystic fibrosis, I would have been devastated. Even then it was still mostly a death sentence — a looooong road of illness and desperate measures to maintain any quality of life.
So imagine my pleasant surprise at being contacted this week by the aforementioned patient-angel blogger, who has cystic fibrosis and lives to help other patients, no matter what their disease, navigate the health care system!
Her name is Tiffany Christensen-Preiser. She’s about 30 years old (IMAGINE!) Her blog is SickGirlSpeaks.blogspot.com Her experiences with life and health are beyond what 99.9999 percent of the world will ever have to endure. But she turns her lemons into wonderfully refreshing lemondade and shares insights that benefit us all.
Take some time to see what she has to say. A delightful example is her post on getting a PhD in patientology.
And if anyone tells you they don’t believe in angels, send them to Tiffany’s blog.
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