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Showing posts from July, 2014

When I Lost My Voice

People from my school would say I'm very quiet. I tried not to talk too much because I was afraid that I would come off as some loser. When I spoke, my voice would crack and shake, I'd trip on my words and I would turn red in embarrassment. Speaking tended to be humiliating, so I stopped. I was more open when I was younger, but a few years ago when a class burst into laughter after I spoke, I stopped completely. I didn't want to be judged because I wasn't an eloquent speaker, so I resorted to not talking very much. My exception was for occasional one liners that would get some laughter and boost my confidence. I loved when they laughed, so I would try to open up more to be funny. Even then, there were times that only got me picked on so I would retreat and picked my battles with more care. The only way people seemed to like me is if I didn't have a voice, and I accepted it. It was in January that an academic society I belong to began preparing to induct several ne

Dear Jenni

Dear Jenni , I've read your blog post (found here) a few times now, and though I have not commented on it, I was deeply troubled by it. I hope you do not mind my sharing of your post in my blog, as well as my open response: I do this because the things you wrote about the nonexistent care you have received troubles me. Being without a rheumatologist for 17 months, denied treatments and not receiving hydrotherapy that was promised to you is completely unacceptable. Although getting appointments and such can take an awfully long time, the amounts of time you describe is not only ridiculous- it is very dangerous. Autoimmune diseases of any sort are an emergency- yet, you are slipping through the system, left out and utterly walked on. This is not health care and you deserve far better care. Due to my psoriatic arthritis, I go to  see my rheumatologist once a month- sometimes every two months if I'm doing particularly well. I take Enbrel, which I only found worked after trying