Why so quiet here on Cobbsblog? To be honest I took the month of July to recover from our medical nightmare in June. But now I'm back and working on paying back a little if I can. My decision to document my wife's atrocious treatment had mixed results but many of them were favorable. We got a lot of good advice and good wishes from friends (THANKS friends!).
We persuaded our healthcare provider to provide us with a better doctor and the treatment since then has been excellent. However, the task of documenting what went wrong in order to help prevent it happening to someone else has proved daunting. Chey has been working on that, on days when she feels able, which are more frequent than they used to be but still far from 7/7. And of course, I have a full time job, which has been more than full time the last few months as I worked nights and weekends to complete a short video for one of ESET's causes: Securing Our eCity. (If you check that link you will see a player for the video, or you can watch it on YouTube in HD...go full-screen and crank up the volume...it is an ad for an upcoming information conference, styled as a movie trailer.)
But what to do about healthcare? I decided to put some time in to hemochromatosis awareness, mainly by perking up the Facebook Hemochromatosis page. This needed work anyway, due to Facebook's latest round of design changes, and the page is worthy of attention. Frankly, this page is a living testament to people coping with one of our country's least recognized medical conditions. Lost amid the deafening roar of political rhetoric about healthcare costs, the simple truth is that our country could save a ton of money if it improved early detection and proper treatment of this major cause of diabetes, heart disease, liver disease, and joint replacements. Heck, the treatment of hereditary hemochromatosis can actually pay for itself! Harvesting the blood taken from HH phlebotomies would boost the nation's blood supply considerably, saving millions of dollars.
I'm also trying to cook something special up for next month when I will reprise my post on hemo-pause and explain how America's baby-boomers can save themselves a lot of pain and suffering. In the meantime, here are some of the past articles on hemochromatosis and links to two of my favorite hemochromatosis sites:
Thank you for chronicling your nightmare so others may learn. I know this is from a long time ago, but would you mind mentioning the name of the lovely doctor you found in San Diego who doesn't believe in pain contracts? Or privately email the name to me? It may no longer be true, but I'm in San Diego, a patient of Sharp Rees Stealy, and I thought I would ask. I don't even have chronic pain: I am four weeks out from a lumbar fusion with 4 screws in my spine and I'm supposed to sign a pain contract to get a refill on pain meds. Yes, it makes one shake one's head.
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