July 29, 2009

Patients for a Moment

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Patients for A Moment is a blog carnival by/for/about patients.  Every other week Duncan Cross, blogger extraordinare, solicits posts from patient bloggers.  He then features them all together in a singular post on his blog.  Now he is passing the torch.  Twice a month, a new blogger will host Patients for A Moment.  This is my week to host.  Catch the next one on August 12 on Adventures of a Funky Heart.  To learn more or read the Patient for a Moment archives, visit:

patientforamoment1

Patients for a Moment #4

In his post The Albatross, Duncan Cross writes profoundly about my favorite illness subject: s-e-x.

I used to take pride in being an overachiever, now I balk at it.  Read Baldylocks’s Exceeding Hyperdrive on The Adventures of Baldylocks: hula hoop video included.

Did you know more patients die each year from medical errors than from breast cancer?  Patient safety receives far too little attention, so I was excited that Florence dot Com wrote about it in her post I’m So Very Sorry.

On Brass and Ivory, Lisa Emrich asks an in-your-face, utterly informed, and armed with statistics kinda question about prescription drug coverage to a panel of doctors at the National Press Club, in Not Your Typical Patient. Lisa is my hero.

Novel Patient takes a flipcam to record her second infusion in Rituxan Take Two, where we watch a mundane hospital routine become personal.

Aviva from Sick Momma has been asked 100 times by her 4-year-old daughter “Mommy, when are you going to die?”  Here’s her answer in From The Mouths of Babes.

Leslie, from Getting Closer to Myself, fuses sociological perspectives on health and illness with her most recent flare of lupus, in What Does It Mean To Live In  A ‘Remission Society’?

Laurie Edwards at A Chronic Dose writes about blogging in the illness community and how it has made her a less judgemental person in On Listening and Judging.

Kate at After Cancer, Now What writes about Scars As Fashion Statements.

Cathy Bueti writes about olfactory senses and PTSD in What’s That Smell?? on her blog In My Life.

If you’re ever terrified of getting an endoscopy, Kim from Emergiblog will put your mind at ease with her post I Went, They Scoped, Now Starbucks is History.

I’d love to know which posts you’ve read and what struck you the most.  Leave a comment below.

The Everything Changes blog is a companion to my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Both book and blog are resources for anyone living with chronic illness.  All are welcome!

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Comment(s)

  1. laurie Says:
    July 29th, 2009 at 9:36 AM

    Great job compiling, Kairol! I can’t wait to read more, but so far I’ve really enjoyed the diversity of themes and experiences here–so many of them resonate with me in such different ways.


  2. Steve Says:
    July 29th, 2009 at 11:39 AM

    Another great edition of PfaM! I really loved Kate’s post, “Scars as Fashion Statements.” Many of us with heart defects see our scars not as ugly rips in our skin, but as marks of combat and badges of honor. We have fought the dragon, and won.


  3. Anita Says:
    July 29th, 2009 at 12:14 PM

    The blog about smell and PTSD is a familiar one to me. I had PTSD, not from cancer but another horrible event from my past. I can relate on a level to PTSD and cancer. My PTSD eventually went away with treatment by years of therapy, but every so often there will be something little or big that reminds me. Yes, I can relate to PTSD and other cancer problems that cancer patients and survivors have.

    Anita


  4. Lisa Emrich Says:
    July 29th, 2009 at 2:57 PM

    Great job hosting Kairol. Thank you for including my post and highlighting such strong voices throughout the blogosphere.


  5. Trusted.MD Network Says:
    July 29th, 2009 at 4:08 PM

    Patients for a Moment is Hosted at Everything Changes…


  6. anon me again Says:
    July 29th, 2009 at 4:21 PM

    Two are my favourite – Laurie Edwards’ and Lisa Emrich’s sites.

    Laurie’s “On listening and judging” – exactly what I have been feeling, since I stumbled upon Kairol’s site through the comment she posted on NY Times article on lupus a few weeks ago – I can’t agree more that there are far more common experiences and issues than differences in specific symptoms. I liked her site for this inclusiveness (not that others weren’t inclusive, but this particular posting did really resonate with me), and the “listening mode” (I wish people around me did more of that!). Also, I think that blogs make it easier to have this kind of mutual learning among patients of different diseases – not sure if I can go to a friend of mine who had cancer and say in person, hey, we have a lot in common, as much as I would like.

    I liked Lisa’s site because it’s incredibly resourcesful with hard-facts, and again, it’s so relevant to all patients with chronic illnesses – increasing (for no apparent justifiable reasons) costs of managing them, issue of pre-existing conditions in insurance, etc.,. Especially now, when the health care reform needs to move from debate to action, this kind of resource is soooo important. I have a very good insurance through work (I am aware of how lucky I am), but still spend hell of a lot of money on my treatments of lupus (and I have two other autoimmune conditions go with it!).

    I really appreciated being able to understand how broken the health care system is through the eyes of a patient with facts that noone can argue, and I pray that there would be a successful reform that benefits all patients . . . . (I am originally from a country where patients of illnesses for which there are no known cures receive public funds for treatments – the list of illnesses is long – so it’s heartbreaking to see people here who had already been hit by serious chronic illnesses are doubly hit by financial burden).

    Thanks for such an educational carnival!


  7. Kairol Rosenthal Says:
    July 29th, 2009 at 6:20 PM

    Thanks for all of the comments on today’s Patients for a Moment. I think that Anon Me Again raised a really interesting question about whether when communicating with people who have diseases different than yours is it easier to do so online rather than in person? I have had amazing in person connections with young adults with diabetes and heart disease. In some ways it felt freeing to talk to them because we couldn’t compare notes on all the medical details, so it was more about how we feel and cope with life. The occasion does not happen too often though. I’m curious what others think.


  8. Aviva Says:
    July 29th, 2009 at 8:33 PM

    I love the fact that PFaM takes me out of my niche of folks with similar symptoms if not diagnoses to mine. Kairol, thanks for hosting this round! Awesome job!

    I still have more contributions to read, but I really liked the way Leslie from Getting Closer to Myself made me rethink my hope/desire/expectation for a “cure.” Laurie from A Chronic Dose also gets me thinking and pondering, which I appreciate a lot.


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