Sunday, June 30, 2013

Chronic Resilience Essay Contest



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.
  

Thursday, June 27, 2013

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 diagnosis of being HIV-positive in 1988 and says that doctors "believed I was one of the first five or ten upscale, professional women in New York infected with HIV who was not an injecting drug user.""

You can read the rest of the post here.
   



Tuesday, June 25, 2013

Dreaming of the High Seas



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 movie Master and Commander: The Far Side of the World is based. A movie which I have watched over and over again, not so much for the pleasure of watching Russell Crowe — although there is that — but for the ship and the voyage.

 

Ever since the first time I heard of a school ship, I've wanted to sail on one. Not to go to school on one temporarily, but to sail permanently on one. Years ago Mark Burnett tried to start a new show called PirateMaster and the contest part wasn't very good, but the scenes on board the ship? I could have watched those daily and ignored the contestants.


Years ago, my mother, sister and I went to Ottawa for a long weekend around July 1 (a.k.a. Canada Day). While there, we went to the Museum of Civilization — and if you're ever in Ottawa, make sure to lose yourself there for several hours. It is beautiful inside and out. Part of the exhibits is a history of Canada, taking you through several tableaux as an illustration of different times in the country's history. One of those is the inside of a sailing ship, filled with settlers. It was dark and you're surrounded by wood, but best of all was the sounds: the slap of water against the hull, the groan of wood as the ship breathed and the creak of rigging. I could've stayed there all day, just listening.


This weekend was the Toronto kickoff to the summer-long Tall ShipsFestival and the whole family went. When I perused the website, gazed photos of ships on the sale, I saw there were tours. Rather immediately thereafter, I spent some time sulking because tall ships aren't accessible. I wanted to go on one. I wanted to sail on one, but in the absence of that, I'd settle for a tour.

 

A couple of days before we were due to head towards the waterfront, I had a dream that we were there. The ships were beautiful and the weather gorgeous, warm and sunny. Somehow, The Boy managed to get me on board one of the biggest, the US Brig Niagara and we went for a sail. Brilliant man that he is, The Boy managed to snag a spot in the very front of the deck, right by the bow before the wood of the hull closes in front of you and becomes the bowsprit. And then she flew out of the harbor and into the open water and I remember being surprised at how fast the sails carried such a large ship. What had been warm onshore was now a wonderfully brisk weather, enough that the speed vreated a spray of water as she plowed through. It felt like we were on the open Atlantic. I remember taking photographs in motion (because I frequently bring my camera in my dreams), many of them blurred and at odd angles and I remember one in particular, pointing the camera backwards and catching the grinning face of my love, full sails behind him. And then I looked forward again, feeling the wind in my hair and the spray of water in my face.
 


I woke up not sad that it hadn't been true, but exhilarated, still connected to the deck heaving underneath me, the sounds of the sails whipping in the wind, the smells of open water, wood and rope and the feel of wind and water in my face. 



Sometimes, dreams come true in the strangest ways. 

             

Tuesday, June 18, 2013

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’ve since learned that when I start transposing words, it’s a sign that I need to go meditate, take muscle relaxants, etc., because it means I’m flaring."

The rest of the interview is here.
  

Monday, June 17, 2013

Shades of Green and Pink

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,
   

Friday, June 14, 2013

Festival of Tongues

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 converted to Doggy Heaven, complete with balls, frisbees and ducks. This guy was particularly enthusiastic, retrieving duck after duck after duck. I'm pretty sure he was still going by the time the sun set


This one loved the water, as well.


Although the day wasn't too warm, the excitement and energy in the air was enough to make everyone pant (even a few of the humans)


Some were dressed up in snazzy costumes


There was even a two-headed dog!


some of the dogs were truly talented in what they could do with their tongues. This one could lick its eyebrows

 

And this one could curl it into a roll


Not sure how much of this one was fluff and how much was dog


They ran the gamut from really large


to really small


and all of them were wonderful.
  
  

Wednesday, June 12, 2013

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 that concept before more than once, but let me recap. It is a term used to describe the way people with chronic pain deal with their pain. Or rather, not deal with it. It’s a concept used in medicine and medical research to indicate that a person worries a lot about their pain, magnifies the pain and its impact and includes a feeling of helplessness. Which to most people who actually live with chronic pain sounds like a pretty normal response to high levels of pain. Right? I do think that there is such a thing as coping well and coping not-well with pain, but I also think that medical professionals labeling certain statements and emotions as catastrophizing is condescending and patronizing and shows complete lack of empathy.

Me? Opinionated? Whatever makes you say that… 

Many rheumatologists don't prescribe pain medication. They tell their patients that they treat inflammation and that if they treat the pain, it will mask the inflammation, making it impossible to see if the disease is responding to the meds. This is a good point and works well with the increasing number of people whose disease response to the medications that are now available. But some don't. And what about them? They may be referred to experts in pain management, but there aren't enough of those. Some areas have no pain specialists, others have a few, but the waiting lists are so long that you can wait a year or more to get in. This leaves people with few options. Some are lucky when their family physicians step in and fill the gap. However, family doctors are not pain specialists, may not know what is available or may not be comfortable prescribing narcotics. Leaving the person without effective pain control.

And this is where I start asking questions. Such as, is it ethical to not treat RA pain? Is it ethical to say "not my specialty" and move on, leaving the patient with a huge, unaddressed problem? A problem that prevents them from having any meaningful quality of life and may very well contribute to depression or suicidal thoughts. Let's put it in perspective: what if an oncologist said that they treated cancer, not the pain that is caused by the cancer? Would that be acceptable? Or would it be seen as a failure of their duty as a doctor, even cruel?

Perhaps catastrophizing — or shall we call it not coping well? — is so much of it a player in the chronic pain field because people do not have cause to feel confident in dealing with their pain. If your doctors won't treat it and you can't access the specialists that can treat it and teach you how to live with it,what reason would you have to feel confident in your ability to cope with the pain? And would this not cause you to worry about your pain, feel that is taking over your life and make you feel helpless? Perhaps the issue is not why people who live with RA catastrophize. Perhaps the more pertinent issue is why health professionals minimize the pain we experience. 

About a year ago, I asked why the first step when diagnosed with cancer is to see an oncology social worker, but people who are diagnosed with a chronic illness like RA are sent on their way, expected to cope on their own. The same question applies to pain management. Oncology includes a knowledge of treating pain or at the very least having a specialist on staff who is an expert in treating cancer-related pain. Why do rheumatology departments not do the same?

Dr. Edward Keystone, a leading Canadian rheumatologist, calls RA "a medical emergency." Perhaps it is time that the field of rheumatology starts treating it as such. This doesn't just include early and aggressive treatment to enhance the possibility of going into remission, but also an awareness of the reality of living with RA and the impact it has on your life. Each rheumatology department at every hospital ought to be one-stop shopping. You see the rheumatologist, get a diagnosis and a prescription for medication. Before you leave the office, you will also have a referral to a social worker who can help you adjust to your new reality and connect you to community resources who can help when you need it. If you do not respond to medication or have moderate to severe disease, you get an automatic referral to the pain specialist who is part of the clinic.

What other services would you include in rheumatology clinics?
  

Tuesday, June 11, 2013

HealthCentral Facebook Chat

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

 

Wednesday, June 05, 2013

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 it’s there in an actor’s reluctance to tell the world about their RA, due to fear of losing their career.

Human beings value perfection. The search for the sublimely perfect has ever motivated us to fine-tune artistic expression such as painting and sculpture. The beautiful soothes our souls, inspires awe and admiration, and gives us something to which we can aspire. Throughout history, appearance has been used to symbolize inner life. Fairytales and literature has used the non-beautiful, as well as disability, to symbolize an inner, rotten core. If you're beautiful, you must be a good person. If you're not, you're the bad guy. If you're beautiful, you're worth more than someone who isn't.

A couple of weeks ago, Angelina Jolie wrote about choosing to have a double mastectomy to prevent breast cancer. Her actions were courageous, especially going public. When you're a famous actor and an icon of sexy femininity, coming out about not being perfect takes a lot of guts. In my last post for HealthCentral, I asked for a celebrity to be the Angelina Jolie of inflammatory arthritis. I hope that some day, someone will respond to that call, but it is a hard road to take. Shannon Ragland has RA and used to make her living modeling and acting. She told me that she "was advised to keep my disease a secret." She sums it up nicely, saying, "your body is your vehicle." And this is why famous women who live with RA are afraid to go public. Because when your career is grounded and being an icon of physical perfection, showing that you aren't can so easily cost you your livelihood.

The fear of going public also affects those of us who are less-than-famous. People don't tell their employer or their colleagues about their disease from fear of losing their jobs. Others worry about coming out to someone they’re dating, afraid the other person will run screaming for the hills. But here's the thing… We are not alone. Not only do we share this state of non-perfection with every other person who lives with inflammatory arthritis, we share it, too, with every person in the world.

Perfection is an illusion. There is no such thing. Perfection is in the eye of the beholder — someone who loves you will see all your good parts and think your "bad" ones are nothing but charming. Health is an illusion. So many live with various medical conditions, ranging from serious to mild. The ones who don't currently, will eventually. It is the nature of being human. At some point, we will all have something "wrong" with us. Sooner or later, the perfection starts becoming less so.

And after all, isn't that what makes a person interesting? The lines in your face show that you've lived and felt strongly. The slight hitch in your step adds a certain something to your walk. Stretch marks after pregnancy shows you’ve grown another person. And for those of us who live with inflammatory arthritis, scars and deformities are badges of honor, showing that we have lived through hardship and are still standing.

Maybe the biggest favor we can do for each other — and for that celebrity who is trapped in silence and alone — is to reject the idea that perfection is beautiful. Maybe we should start seeing beauty in strength, in resilience and in those imperfections that set us apart and make us unique. Slavoi Zizek, a modern philosopher, suggests love is about just that: 

“Love is not idealization. A true Lover knows that if you really love a woman or a man, that you do not idealize him or her. Loves means that you accept a person, with all its failures, stupidities, ugly points and nonetheless the person is absolute for you, everything that makes life worth living, that you see perfection in imperfection itself. And that is how we should learn to love the world.” 

Each of us is as valuable as the other. Each of us is perfect — not in spite of our imperfections, but because of them.