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Showing posts from June, 2013

Chronic Resilience Essay Contest

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Danea Horn's new book Chronic Resilience: 10 Sanity-Saving Strategies for Women Coping with the Stress of Illness is about a month away from hitting the bookstores and to celebrate, she is holding an essay contest. 

Who inspires your chronic resilience? Who helps you get through the day? Tell Danea about them in a 1000 word essay and submitted by midnight, July 26, 2013 for a chance to win one of three really cool prizes.

All the contest details are here.

Living with HIV and RA: An Interview with Mary Turner

I've wanted to do a profile of my good friend Mary for HealthCentral for a long time and finally the stars aligned. She's a strong, smart and very funny woman. We got introduced by LynnM, who's a long-time reader of my blog, as well as also being a good friend. I'm a lucky woman...

"Being HIV-positive is not an easy life. What happens if you add RA to the mix? How does your HIV status impact your RA treatment? I recently interviewed my friend Mary Turner from Charleston, S.C., who's lived with HIV since the late 1980s.

Mary is one of the longer survivors of HIV. "I was infected in 1985 when I was living in New York City." This was in an age where HIV was only found in gay men and drug users. At that time women’s biggest worry about being sexually active was unwanted pregnancy. For most, birth-control pills to care of that concern — condoms were unnecessary. In the late 1980s, however, that changed when women began to get HIV. Mary got a diagno…

Dreaming of the High Seas

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All my life, I’ve dreamed of going to sea. There are probably any of several reasons for this. Growing up in Denmark, so close to the ocean. Growing up with tales of Vikings so ubiquitous they’re in your blood. Seeing the still-graceful lines of the remains of a Viking ship in museums and deeply connected to the mythology — both my sister and I wear a silver Thor’s hammer more often than other necklaces. There are the fishing boats cheek by jowl in any of our harbours and the scent of salt everywhere, except the inner-most interior of any of the larger islands.

I remember being lost in books about Thor Heyerdahl, the Norwegian who crossed the Pacific in a boat made of traditional materials. I remember reading books written by people who sailed around the world in a modern sailboat and I read them over and over again. My biggest love, though, was saved for the tall ships. I still read stories about those — Horatio Hornblower, Sharpe, the Aubrey-Maturin novels, the books upon which the m…

Fibro Warrior of the Week (#24)

Thank you very much to Fibro Daily for asking me to be their Fibro Warrior of the Week. . They asked a lot of good questions about living with fibro:

"FD: When did you first suspect that something wasn’t right? What happened?
Lene: I started noticing something weird in early 2004. I’m used to JA pain, but this was different. My mother has had fibromyalgia for a couple of decades and thought that might be what was going on. I mentioned it to my doctor and rheumatologist, but they both didn’t think so at the time. I was pretty sure, though.

That all sounds very calm and logical, but it was a crazed time in my life. Despite living with chronic pain since I was a trial, this was a completely different kind of pain. None of my coping mechanisms worked. I also felt like I was losing my mind — one of my symptoms was that the more I flared, the harder it was to focus. I would be at my computer, intending to write “orange”, but what appeared in the document was “filing cabinet”. I’…

Shades of Green and Pink

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We had one bright, sunny day and the... more rain. The good thing about rainy days is the way it washes the world into freshness. So naturally, I had to go out and celebrate! In a lucky - and unconscious - bit of good timing, it's also the height of of the peonies blooming


I also found a big bed of hostas, saturated with green


The peonies ranged from buds 


to blowsy



and the hostas looked like they were scattered in pearls



I went in for a closeup


and at the end, went by the masses of roses down the street that have just started to bloom, just as the peonies are coming to an end


The rain made my body hurt, but the walk made my soul happy. Not a bad trade-off,


Festival of Tongues

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Last weekend, we went to the annual "immerse yourself in canines" festival a.k.a.Woofstock. It delivered just as much fun as usual, except with the odd exclusion of funnelcake. I've been talking about dogs and funnelcakes for months and was very disappointed to only find one of the two anticipated delights.

However, when it comes to dogs, this festival delivers. The delay in posting was due to the time it took to wade through several hundred photos and narrow them down to something reasonable. And then narrow down some more, because 30 photos of dogs might be a tad excessive, even for me. I discovered that my new camera absolutely rocks in terms of catching fast movement, so there were a lot less blurry shots, adding to the difficulty. Herewith some of the best.

Some dogs were really excited to be there


others a touch more hesitant


there were meet and greets

babies


and somewhat more senior gentlemen


also the inexplicable

As usual, the large fountain in the neighbourhood had been…

A Problem & A New Vision for RA Treatment

“The type of pain associated with moderate-severe RA is comparable to bone cancer.”
This is a quote from a recent post by Vanessa Collins on HealthCentral, an interview with Mischelle Jackson, who lives with RA. The source of the quote is Mischelle's rheumatologist. And it has been reverberating in my mind since I first read it a week ago.
I have never heard anyone compare RA pain to any other pain. It makes sense, though. This lifts pain out of the very individual and problematic 1-10 pain scale. A scale which, exactly because of its individual nature, does nothing to convince doctors that your pain is very real and is indeed that high. Assigning an arbitrary number that varies from person to person — and varies from experience to experience within one person — feeds the notion that high pain equals the person not coping well with the pain (as opposed to being a really high level of pain). And so, catastrophizing enters the picture.
Yes, that again. I’ve shared my feelings about tha…

HealthCentral Facebook Chat

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The Faebook chat for HealthCentral (previously postponed due to my had thing) is this Wednesday. See you there!

Perfectly Imperfect

Perfectly Imperfect is my post for CreakyJoints this week
What is the value of a person? Does a chronic illness detract from that value? Is there such a thing as perfect health?
About a month ago, Ms. Meniscus answered a question from a woman with RA whose future mother-in-law had offered her $25,000 to not marry her son. And it got me to thinking. Not about Ms. Meniscus’ answer — which, as usual, was excellent — but about the situation that prompted the letter. I was astonished that such offers actually happen outside of trashy romances and soap operas. And yet… Perhaps I shouldn't have been surprised. This rude and ruthless mother merely had the cojones to say out loud what so many people think.
That a chronic illness makes you damaged goods.
This thought runs through our lives, like a quiet fuse waiting to ignite. It’s there someone newly diagnosed wonders if they'll ever find love. It’s there when we bow down to being treated unfairly at work, just grateful to have a job. And …

White in Green

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