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.
The Seated View
Opinionated ramblings about almost everything
Tuesday, June 18, 2013
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,
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,
Labels:
Photography
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
and somewhat more senior gentlemen
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.
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.
Labels:
Downtown Living,
Joy,
Life
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?
Labels:
Medical nonsense,
Pain,
RA
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!
Labels:
HealthCentral
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.
Labels:
Chronic Illness,
CreakyJoints,
RA
Monday, June 03, 2013
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