Patients for a moment: First-Ever Edition

Wednesday, June 17 2009

Welcome to the first ever Patients for a Moment - a roundup of blog posts for, by, or about patients.

If this is your first time hearing about PFAM, let me explain that the goal is to build connections within the community of people who blog about illness, disease, and disability. This includes doctors, nurses, caregivers, even policy wonks – but especially patients.

My goal in organizing this carnival is to give blogging patients – many of whom focus on a specific disease – a chance to reach out to a broader audience. I recognize that blogging can be an important way to talk and think about a diagnosis. But I also think we as patients ought to engage other patients with different diseases, to explore what we have in common as people with illness. The more we’re able to engage and communicate with one another, the better off we’ll all be.

So I’m arranging these posts with that as sort of a rough guide – and Leslie at Getting Closer to Myself gets the pole position for her post, “Continuum of Disclosure”, on how to talk about being sick. I have gotten this wrong pretty much all my life, but I am trying to learn to be more candid about my illness. Thanks to Leslie for some useful thoughts, which I’m sure will resonate with many patients.

Barbara at In Sickness and Health asks, “What Happens When the Well Partner Gets Sick?” A lot of patients rely on a healthy partner to help them get by, but how does that relationship change when the healthy person suddenly becomes ill? Barbara wants to know.

Steve at Adventures of a Funky Heart explains “How I Became the Funky Heart” – and how he learned the hard way to play an active part in his own care. In fact, this is a lesson that too many of us learned the hard way – but now there are blogs, so you don’t have to learn it the hard way. Take it from Steve and me: you need to play an active role in your care.

Kairol at Everything Changes reflects on whether young adult cancer survivors can learn anything from other young adults with illness; her post is titled, “Widening Your Cozy Cancer Community?” Short answer: yes.

Kim – a nurse – at Emergiblog posts, “I See You in a Different Light“, where “you” means “us” patients. She writes that “the best part of nursing is the patients themselves.” It makes a huge difference in a patient’s experience to know that we’re not just a burden and a hassle to the people taking care of us.

Reality Rounds – also a nurse-blogger – joins us with a post about a wonderful diagnosis – acute abominal infantiasis, aka pregnancy – and going from nurse to patient in the process. The moral of her story:”Nurses are not nurses when they are patients, they are human beings.”

Sheila at A Blessed Mess spent a sleepless night writing about “the unjust choice anyone with a chronic illness may have to make at some point between treatment with a side order of bankruptcy or simply not getting medical care at all” – a choice that keeps a lot of us up at night.

Ill in Illinois – who is living Sheila’s nightmare – says “Retail Clinics No Answer to Medically Underserved”, and backs it up with experience and evidence. Ill in IL‘s blog shows you it doesn’t matter what your diagnosis is, if you can’t get access to care.

Laurie at A Chronic Dose – one of the best-known patient blogs – writes, “Thank Goodness I Like Vegetables“, about eating well on a gluten-free diet. I tried this for a while; it didn’t help, but I definitely respect the challenges faced by those who need a similar diet.

Kerri at Six Until Me writes a very pointed “Open Letter to Brett Michaels” – that’s Brett Michaels of the VH1 reality show, Rock of Love. Apparently, Brett thinks that letting his blood sugar get out of control – like Kerri, he’s a diabetic – gives him superhuman sexual stamina. Kerri points out that this is a seriously dumb idea. From what I know of Rock of Love, letting Brett Michaels reproduce might also be a dumb idea.

Lisa at Brass and Ivory posts about “Bouncing Around: Doctors and Eyes” – in which she and her doctors try to assign symptoms to specific causes. My solution to that problem is to blame prednisone for everything (even though I’ve been off it for years). Lisa has been a big supporter of my idea for a patient-blog carnival, so many thanks to her.

Kelli – a former nurse, now full-time patient – blogs at Gumbo, where she asks “Who is going to catch me?“  while reflecting on her physical therapy. She notes something I’ve heard elsewhere: “there is a fine line between therapeutic and torture.”

RA Guy imagines a reality show about rheumatoid arthritis – calling it “Survivor: Tierra del Fuego”. It could go without saying that we’d all be better off if television and movies gave a more realistic depiction of illness.

And we’re done! My plan is to do this again in two weeks – submission deadline on June 28th, go public on July 1st. I’ll keep promoting the carnival in the meantime, and if there’s enough interest, we’ll go to weekly editions in July. If that’s the case, I will need volunteers to host PFAM on their blogs (and I already have a few).

Thanks to everyone for submissions, links, and support. Now go read posts – and be well!

Tags: misc, pfam

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