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Home » Articles » Cool Tools
Patients For A Moment Vol. 1, #12 - A blog carnival for us sickos
by Jenni Prokopy, the Editrix
Hosting Patients For A Moment (PFAM) is a great honor. (Thanks, Duncan!) Sure, I love a good edition of Grand Rounds, but sometimes there are so many health care provider-created posts I'm a bit overwhelmed. And after all, the idea of patient-generated content is why this whole ChronicBabe thing got started...I'm obviously biased. Let's see what the ChronicBabes and ChronicDudes are talking about this week:
It's not fair to say there's a best post, but Katie at Overflowing Brain kind of stole my heart with her piece about A World of Hurt. She writes about a university course she's taking where all the rest of the students take on a disability for a day and then write about the experience (she's excused for obvious reasons). But is pain really a disability, she asks? And if we chronically ill folks ask these kinds of questions ourselves, is it any wonder our peers, family members and the health care community also have questions? These questions we all have—aren't they what we try to answer when we blog about our experience? This kind of awesome writing makes me proud to be part of such a fantastic life-changing community. Whew...OK, with that, let's really get on with the show:
Getting Social
Lisa Emrich of Brass and Ivory writes about the FDA, Social Media and Pharmaceutical Advertising at MultipleSclerosisCentral.com. She wants transparency...and I suspect that's what most patients want, too.
In a Perfect World... Sara at The Single Gal's Guide to Rheumatoid Arthritis writes about a conversation that starts easy and...stays easy. Informative and affirming, in fact. Just goes to show sometimes when we reveal our invisible illness, we find wonderful allies.
Speaking of allies, Kerri Morrone Sparling of Six Until Me sent along a World Diabetes Day vlog that's hilarious, heartfelt and full of love for all the folks in her social circle who keep her strong (and, I bet, vice versa). Worth the watch, my friends.
Let's Get Outraged!
Glanding along and BOOM really threw me. Such intensity from Katie Schwartz about her life with Graves' disease and Graves' Opthalmopathy! Her Dear Thyroid site allows others like her to write letters to their illness, releasing powerful feelings, anger being only one. I have a blogger crush, I admit it.
Aviva over at Sick Momma writes about The Latest "Lifestyle" Drug: allergy medicines. At least, that's what her health insurer says, ranking throwing them in with Rogaine and Viagra. Because, you know, breathing and not going into anaphylactic shock are lifestyle choices.
Even with all we know medically, there are still skeptics who just don't GET what it's like to live with rheumatoid arthritis. Kelly Young at Rheumatoid Arthritis Warrior shares Mistaken Beliefs About an RA Blog. Anyone who refuses to have compassion for folks with RA can go, well, hmm...you know where.
I'm a bit outraged on behalf of The Novel Patient, who writes in The Unexpected about seeing a new doc who throws Novel Patient's world into a spin by declaring that her "primary diagnosis" may not be so "primary" after all. Who dropped the ball, Novel Patient wonders? I'm scratching my head, too.
Is Being An Aggressive Patient Always Smart? This is the question Kairol Rosenthal asks at Everything Changes. She raises some important questions about strength, proactivity and the patient experience.
Cool Tools
Whether or not you have reflex sympathetic dystrophy (as writer thematrix777 does), keeping the cold temperatures at bay is a challenge each winter season. She offers 7 Ways to Beat the Cold at her blog, A New Beginning: My Life with RSD.
"Fibromyalgia Scientist" Selena offers some fantastic "findings" in her post, Fibromyalgia Scientist Case Study: Grocery Shopping. Her blog, Oh My Aches and Pains!, is full of great advice like this. Keep researching, sister!
Pain really can be, in part, in your head...and that's not a bad thing. Diana Lee at Somebody Heal Me: The Musings of a Chronic Migraineur writes about Pain Tolerance: How Your Behavior Decreases or Increases It. Diana's in a behavioral pain management program and learning some awesome tools she's happy to share with the rest of us.
It's Not All in Your Head
Now that I've said pain can sometimes be partly in your head, Rachel Baumgartel's posts at Tales of My Thirties about Quietly Suffering (here's Part Two, with great follow-up the next day) remind me of how I felt when I first started seeking pain treatment: scared pants-less. Because some docs just don't get it! I'm hoping Rachel gets the answers she deserves.
Amber Wiseman shares how her faith helps her cope with the pain of complex regional pain syndrome (CRPS) in Love = Pain?! at her beautifully titled blog, Out of the Flames.
In Low-Dose Naltrexone for Fibromyalgia? Well... Kathy at Fibrochondriac experiences rejection when she tries to explore a new medication avenue with her doc. She takes her research on the road, searching for a new health care practitioner.
Over at How to Cope with Pain, we get some great perspective on Thoughts About Balance When You Have Chronic Pain. These are strategies even Babes without pain can use...who couldn't use a little more balance in their lives?
Mind-Body medicine, anyone? Loolwa Khazzoom of Dancing with Pain offers up My Videotaped Conversation with David Simon, MD, on Free to Love, Free to Heal, full of interesting stuff on healing our emotions along with our bodies.
Break Out the Tissues
Steve at Adventures of a Funky Heart! definitely tugged my heartstrings with his post, The Letter, about his parents driving through a snowstorm in 1967 to get him to Johns Hopkins for his first heart surgery. Let's all virtually hug his brave folks, shall we?
At The Road I'm On Brittney Riley talks about a first step in her journey back to herself, seeking out that awesome woman who still lives inside her now-sick body. Her post, Finding Myself on the Trail, made me a little teary-eyed...but in the happy way.
In Disappointment: The Intellectual Opposite of Hope? Laurie Edwards writes about recalibrating our hopes and dreams. Her blog work at A Chronic Dose is always awesome, and I've re-read this post a couple times in recent days. Chokes me up—and reminds me I'm not alone. None of us are!
And Leslie Rott nearly breaks my heart in her post, "A Dream is a Wish Your Heart Makes"??? at her blog Getting Closer to Myself. The interweaving of illness and love that many of us face is complicated, and yet she captures so much of what I (and I suspect, all of us) have felt.
And What About Hope?
Becky Thomson at Instructions Not Included asks, "what's your dance class?" in Dream a Little Dream of Me... Despite diabetes and other life obstacles, she's still making plans, kicking asses and taking names (oh, and she will always be a dancer). Inspirational, no?
At A Sofa with a View, Elizabeth Campbell is dealing with a big fibromyalgia flare, but she's not letting it defeat her creative spirit. In Fibromyalgia & Blogging as a Creative Outlet she shows us how to persevere, one step (word?) at a time.
I know I'm not alone when I say I hope the holidays are filled with peace. Lisa Copen of Rest Ministries Chronic Illness Pain Support gives us lots of strategies for Avoiding Holiday Fueds When You Are Ill. Fantastic!
Thanks!
A huge, massive thanks goes out to everyone who contributed to this edition of Patients for a Moment, and to founder Duncan Cross. If you want to continue this conversation, we'll be chatting about it over at the ChronicBabe Forum.
P.S.: Shopping? Use our Amazon links and help us earn commissions that fund this site. Thanks!
Posted: 11/18/2009 in Cool Tools | Also posted in: Inspiration
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