This is something that gets passed around communities of folks with rare/chronic diseases. It’s well worth the read, since most of us will cross paths with someone with a chronic illness at some point. I can’t think of a better analogy. Click on the link that says “click here to read The Spoon Theory”. It’s [...]
Archive for the ‘the patient experience’ Category
Spoons and Swine
Posted in health care, life after....., the patient experience on November 5, 2009 | Leave a Comment »
As is confession
Posted in health care, life after....., the patient experience on October 11, 2009 | Leave a Comment »
In spite of having a file of posts stacked up like planes above O’Hare, there was a notable silence around these parts last week.
I awoke Friday morning, retreated to my recliner with it’s comforting heat and massage as is my ritual, to find this article waiting to fill my world with sunshine.
Six hours later I [...]
Medicare for many
Posted in Politics, health care, the patient experience on October 2, 2009 | 1 Comment »
Reading about the current proposals floating around out there, my heart sank. I spent much of last night crying. It’s clear we’re not going to get any health care reform legislation that is going to help people with orphan diseases, or remove the cost of their care from the national budget.
Most likely families like mine [...]
The whys and hows of self-care.
Posted in life after....., the patient experience on September 29, 2009 | Leave a Comment »
If there is one thing we folks with chronic/rare diseases do well it’s self care. Sometimes it’s been the only kind of care we had.
I like making lists of self care things that work. In part because when I need them, my brain is usually not capable of recalling them, in part because I want [...]
Why health care co-ops are not the answer
Posted in Politics, health care, the patient experience on September 29, 2009 | Leave a Comment »
I am a strong proponent of a public option. My preference, for feasibility and affordability, would be a “Medicare for All” by choice, with a few caveats: ERISA needs reforming, Medicare reimbursement rates need adjusting to be more reasonable, and less punitive towards states that use health care funds wisely, and users are going to [...]
“….You don’t have that kind of pain!”
Posted in Kaiser Permanente, health care, the patient experience on September 27, 2009 | 2 Comments »
As a person dealing with chronic pain, the debate over pain medication drives me nuts.
Being a person who focuses more on logic than emotion, I know that pain medication has it’s dangers, is overused, addicts abuse it, it poses a risk to the general population, and so on.
As someone who uses pain medication on occasion, [...]
I said there’s no swelling….
Posted in Kaiser Permanente, The Blame Game, health care, the patient experience on September 22, 2009 | 3 Comments »
They say a picture is worth a thousand words. This one, shocking though it is, doesn’t begin to tell half the story.
As I mentioned in this post, my 10 inch incision sprang a leak. Unfortunately that wasn’t the end of the fluid accumulation. Not long after having my drains removed, my abdomen began to [...]
Profit: 1 Orphans: 0
Posted in Politics, health care, the patient experience on September 21, 2009 | Leave a Comment »
I went googling for information on how Sen. Baucus’s proposed health care reforms might possibly allow us access to health coverage.
I found this post from a New York Times blog.
Having just been through a layoff, our personal situation is to complex to use as an estimate, so we’ll go with a 4 person family, and [...]
The devil you know
Posted in Kaiser Permanente, health care, research, the patient experience on September 17, 2009 | 2 Comments »
One of the latest trends I’m finding in trying to get Kaiser to do something, anything to deal with AD, is this tendency to scoff at the information that the current research is showing. Golden little nuggets like “oh, that’s just a bunch of research mumbo jumbo” or, “researchers like to think they know about [...]
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