Patients for a Moment #3

Wednesday, July 15 2009

Welcome to Patients for a Moment #3. Lots of great posts to get to, but first an administrative note: if you click on the PFAM logo in my sidebar, you’ll see that I’ve created a page for PFAM. The page does two things: first, it gives me a place to put a calendar for upcoming hosts; second, it serves as an archive of links to previous editions of PFAM.

This edition of PFAM had no specified theme, but I have been astounded at how many of these posts capture aspects of my own experience with illness. In post after post, I  see reflections and shadows of my life and struggle – evidence that we all have a lot more in common than we might realize. I am lumping those posts together, starting with Angela at Health-e Inspiration, who writes about her struggle to find a specialist and regimen that works for her: “Finding the right care on the road to wellness.” Been there, done that, got the prednisone psychosis to prove it.

In her post, Leslie at Getting Closer to Myself writes about sex and relationships while being sick. Like a lot of us, Leslie’s views on these things changed significantly once she got ill; her post is full of insight on an issue a lot of us struggle with. Been there – but a gentleman doesn’t kiss and tell.

We’ve all had days – or months or years – where illness kept us from doing what we planned. Sheila at A Blessed Mess channels her frustration on such a day into her post, “Not Exactly the Post I Intended“.

Kairol at Everything Changes posts on, “When ‘How Are You Doing?’ is Not a Simple Question“. We all know that question, and it hardly ever has a simple answer.

Aviva at Sick Momma wonders “Is it Possible To Get A Pre-Illness Life Back?” If you follow the link in her post back to this blog, you’ll be glad to know I did go kayaking this past weekend.

Lisa at the Chronic Illness Support Blog has been a leader in the online patient community, organizing the annual “National Invisible Chronic Illness Awareness Week”. She posts, “I don’t feel lucky that my illness is invisible – but am I?”

Diana Lee at Somebody Heal Me writes about “The Let Down of Not Having Answers” – the worry and fear that comes when doctors run out of treatment options.

Steve at Adventures of a Funky Heart! riffs on the Billy Joel song, “River of Dreams”: “In the middle of the night…” His post is about doubt and fear and finding your way through it all.

Also musically inclined, Jenni the ChronicBabe offers a list of songs about breathing – songs that help her keep mindful in the face of her illness, which is a cool trick. Since there aren’t a lot of (or any) songs about not pooing, I get my inspiration from the White Zombie song, More Human Than Human. (Warning: explicit lyrics you probably can’t make sense of anyway.)

Now that my eardrums are bleeding, we come to a trio of related posts on costs, medication, and safety:

Lisa, of Brass and Ivory and My RA Central, tallies up the annual cost of her chronic illness. It’s a big number – and an exercise all of us should consider doing ourselves.

A different Lisa, writing at New Knees for Lisa posts about the “High Cost of Staying Well“. Lisa has an unusual perspective, in that she used to work for a pharmaceutical company – and she brings that experience to bear in her post.

Barbara at Florence Dot Com writes about medication errors, comparing our medication system to a runaway train: “Where’s the engineer of this wreck?” If you take any medicine, you’ll want to read her post.

And finally, two posts on health reform. I have avoided themes for PFAM since I really, truly want to know what’s on your mind. But if I did do themes, health care reform would be my first choice – because that’s been on my mind a lot lately. So I’m glad to see other bloggers are thinking about the same issue.

Kate at After cancer, now what? asks, Why are old people the only ones guaranteed health care? – a good question, and one I think deserves a real answer.

If you have your own questions or concerns about health care reform, Dr. Rob at Musings of Distractible Mind wants to know what you think. Dr. Rob is going to Washington to talk health care this week, in a discussion event titled “Putting Patients First“. Let him know what that means to you. I’ll be attending the event, if only to keep him and his colleagues honest.

That’s it for this edition. Remember, this is my last time hosting for a while (I hope). Next time – July 29th – Kairol at Everything Changes will be running the show. Check her blog or back here for updates and deadlines. I’ll still be maintaining the calendar and organizing the hosts, so let me know if that’s something you want to do. In the meantime, be well.

Update: I picked up a straggler. Kerri at Six Until Me  writes about the real people and real community behind diabetes in her post CWD: Friends for Life.

Tags: pfam

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