There is a big hoo-ha going on about the various internet companies that get information from consumers cooperating with the government to screen our E mails. I am just not all that bothered by it. They can read all my stuff – good grief, I post most of what is going on with me, and the stuff I don’t is major boring.

I suppose there is always going to be the risk of their misunderstanding something – and thinking I am suspect because I don’t like Mahler and I think Bruchner’s music indicates he was schizophrenic. It’s a risk I’m willing to take. The world has changed and we have to keep up with it. Obama said, in a very recent speech, that we can’t have 100 percent protection and 100 percent privacy. I agree.

What concerns me far more is right wing interference with voting rights, intrusion into women’s private choices (yes, they can know about a wanted abortion – they should not be allowed to interfere), and the ever-present medieval wish to differentiate between pay scales based on gender.

About chronic illness

There was a podcast I recently listened to (it’s an old one) from Fresh Air. A young woman has written two books about chronic illnesses and auto-immune diseases. Her name is Laurie Edwards. Her first book was “Life Disrupted” about having chronic illness in your 20s and 30s. Her second book is “In the Kingdom of the Sick.” She has a very rare lung disease called Primary Cilliary Dyskenesia, similar to cystic fibrosis, but so rare that, although she was born with it, she was not diagnosed until she was 23. She is now 33.

She writes about not being believed, having doctors think she was malingering, having them suspect her symptoms were invented to gain attention (this, while she was in intensive care). Having them think she had some kind of asthma and was just not taking her meds and following instructions because she was lazy.

When she got a diagnosis, she was liberated. She is getting better, focused treatment, and she can get on with her life in a more forthright manner.

Very few doctors even, have heard of this illness. She went on the internet and found only one other person who has it. She also has bronchiacisis (sp?), a secondary condition from damage to her lungs from the first illness. She has ciliac disease, and an underactive thyroid (well, many of us have that).

Despite all that, she finished college, spent a year abroad working and studying, wrote these books, got married, had a child, and teaches. And she wants to get the word out to help others with chronic illness since very often, too often, women, who are the most commonly affected, are treated like malingering children, or, you know, it has something to do with your hormones, so get out of bed and shape up.

I am going to read these books. I don’t plan to convince myself I have something, but I would like to know more.

xx, Teal