This started out as quick and simple, but there turned out to be more to chew on than I expected.

There’s nothing here that will be a surprise to any experienced patient advocate, but it may be useful to newbies. (If you’re not familiar with our movement, e-patients are Empowered, Engaged in their care, Equipped, Enabled… pick your e. We and our clinicians have a Society for Participatory Medicine, about patient-provider partnerships.)
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I noted two weeks ago that when I got a prescription for new glasses, the optometrist (eye measurement guy) said his eye-puff-tester found high pressure in one eye. Re-tests said yeah, I have high intraocular pressure, which can be a precursor to glaucoma, which can cause blindness.  Good example of a simple routine screening test finding something before it becomes a problem. Rx: go to the ophthalmologist (eye doctor, as in MD).

(The high pressure is often caused by failure to drain the fluid (aqueous humor) that’s constantly flowing into the eye… pressure builds up, and can damage the optic nerve, generally starting at the edges – the blindness often starts as a loss of peripheral vision.)

Well, I don’t really have an eye doctor, but the only shop in town (literally) is Nashua Eye Associates, so I called them. I got hooked up with a doctor, who did an exam with a fancier machine and said yeah, I have high pressure in both eyes. But my optic nerve looks  fine, and so does the “optical angle,” where the fluid drains. So, no problem yet.

She prescribes eye drops to promote drainage. $9 co-pay. We discuss the two additional tests I need, after which she’ll see me again.

Now:

Expression of e-Patient #1: gimme my data
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On my first post about my BCC (basal cell carcinoma), seeking patient communities and other information, I was pleased that people submitted four communities.  I posted them to my very informal patient communities page:

• Basal cell carcinoma
  • EmpowHER basal cell community
  • PatientsLikeMe basal cell skin cancer
• Generic skin cancer
  • American Cancer Society: http://csn.cancer.org/forum/145
  • Inspire.com: http://www.inspire.com/groups/skin-cancer/

Tonight (Feb 20) I’m exploring them for the first time.  I didn’t find any useful information yet, so you may want to come back another day.:)

• If you know of other communities, please submit the URL in a comment below.

This won’t be of interest to most people – it’s mostly for people who want to study what a site should be, and the process of exploring.

Preface – my purpose and context

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In Outliers, Malcolm Gladwell famously said that sometimes it looks like someone has become an overnight success. (A current example is new NBA darling Jeremy Lin … only 16 games since becoming a star, but look at his massive Wikipedia page.)

But, Gladwell says, almost always that person has put in 10,000 hours practicing their skills and gaining perspective. Then things come together, and it looks like they arose out of nowhere.

I don’t know if he was thinking about this graphic, but I know the feeling it conveys. Not sure where I am on this path, but I know the e-patient movement is farther along than it used to be. We are credible and people are listening.

However far along we are, our movement is driven by one of the most fundamental forces in human nature: people want to take care of their families. So we may face hurdles and diversions, but time is on our side. Especially as we boomers become a problem.:-)

Like, ex-hippies who today are acquiring multiple “co-morbidities.”

(Yeah, that’s what the medicos call it when we have more than one condition at a time. Lovely, eh? You can guess which party decided to call it that … it wasn’t a patient!)

Don’t be put off by obstacles, folks. Do what you need to do. Take care of each other, and help each other do so. Let Patients Help.

Thank you, all of you who’ve written to express concern. But I seem to have come across as more concerned than I am.

Yeah, I have Stuff To Deal With.  Skin cancer (yawn), eye drops (irritating actually) & tests, and dental stuff (annoying cost-wise but I have a damn good dentist I’ve been with since 1980 … post-grad work at the Pankey Institute, heavily patient-centered). Yeah, I have Stuff. But I’m fine. (See the photo, right, taken two weeks ago in San Francisco with the amazing Hugo Campos, whose “gimme my data” TEDx talk is the recent darling of the e-patient world. He Photoshopped a background of numbers into it – wish I could do that!)

I’m not depressed.

I’m not gloomy.

I’m not worried. (This bears no resemblance to metastatic kidney cancer.)

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