I
recently read “Your Life with Rheumatoid Arthritis: Tools for Managing
Treatment, Side Effects, and Pain” by Lene Andersen.
I’ve
invited Lene here today to tell you a little bit about herself and her
book.
First
off, can you tell my readers a little bit about yourself?
LA: I was born and raised in Denmark and moved to Toronto, Canada
in the early 1980s. I have a Masters degree in Social Work and used to work in
policy and program development in the human rights field. After a huge flare of
my RA in 2004, I started the Biologics — first, Enbrel, now Humira — and for
the first time in my life, a medication worked for me. Given a second chance at
life, I decided to pursue my lifelong dream of being a writer. These days, I'm
writing the Your Life with Rheumatoid Arthritis series, as well as being the
Community Leader for HealthCentral.com’s RA site and the Director of Community
Outreach for Show Us Your Hands!
You were
diagnosed as a child with Juvenile Rheumatoid Arthritis. How have things changed in the RA world since
you were diagnosed?
LA: It’s like night and day. When I was growing up, the only treatments
available were prednisone and gold injections, and prednisone wasn’t used very
much for growing children. This meant that most kids with JRA — or Juvenile
Idiopathic Arthritis as it’s known now — got progressively worse over time.
It’s why I’ve been a wheelchair user since the age of 16. What I see in children
(and adults) now is something I never thought I’d see in my lifetime.
Remission. Low disease activity. Participating in sports. Living largely normal
lives. From my point of view, it’s a miracle.
What made you want to write a book about
RA?
LA: I wanted my 40+ years of experience living with this disease to be
useful in some way. I’ve met so many people who’ve had a hard time finding
their way through the crap of RA to a place where they can focus on their life
and living it well. You can get there on your own, but it takes years. I wanted
to create a shortcut.
While the book does talk about your own
experiences, it focuses more on providing information to those with RA.
How did you decide on a format that was more advice than memoir?
LA: A memoir is just my story. It’s something I’ve thought of writing in
the future, but right now, I wanted to do something more practical and
immediately useful. Your Life with Rheumatoid Arthritis is a guidebook that
people can use to start on their own journey to empowerment.
You talk about the “treat-to-target” approach for treating RA. For those who are unfamiliar, how is that different from the “traditional” approach to treating RA, and why is it useful?
You talk about the “treat-to-target” approach for treating RA. For those who are unfamiliar, how is that different from the “traditional” approach to treating RA, and why is it useful?
LA: The traditional approach to treating RA is to “go low and go slow,”
gradually working up the ladder of medications from milder (such as Plaquenil)
to eventually stronger (such as Biologics), if nothing else works. While you do
that, the disease can continue to rage, creating damage. The treat-to-target approach
has been made possible by the advances in treatment with drugs like
methotrexate and the Biologics. It applies the model used when treating, for
example, diabetes or high blood pressure, where medications are constantly
adjusted until the right numbers (blood sugar or blood pressure) are achieved.
Treat-to-target assesses progress every
three months, changing medication or dosage until remission or low disease
activity has been achieved. This model of treatment makes it more likely that
low disease activity or remission will be reached before significant damage has
occurred. This leads to an increased chance at being able to live a fairly
normal life.
It seems that RA treatment, at least for you,
has been a combination of traditional medicine and alternative therapies.
How essential do you think this is for others with RA?
LA: Conventional medicine is the only tool we currently have to control
the disease, but in my experience, alternative treatments can make a huge
contribution to improving your quality of life. There are many different types
of treatments that fall into the “alternative” model and people can try
different ones, depending on their comfort level. Massage, acupuncture,
naturopathy and so on, are all considered alternative treatments.
You talk
a lot about pain management in the book, and it seems like a rather necessary
component of treating RA, although it can be a sensitive subject. Other than Prednisone, my own treatment
hasn’t really focused on pain management (even though a significant amount of
pain accompanies my disease). What do
you feel is the best way for people to approach their doctors about this
issue?
LA: First, I think it’s important that we realize no one’s going to give
us a medal for sucking up pain. There is a myth in our culture that you have to
have a stiff upper lip, but it’s a completely unreasonable approach to dealing
with chronic pain. Talk to your doctor about the impact the pain is having on
your ability to live your life. Be honest, cry if necessary. Your doctor’s
office is not the place to pretend to be doing better than you are. Many
rheumatologists say they don’t treat pain, they treat inflammation and there is
an increased understanding that pain is a disease onto itself. If your
rheumatologist is not comfortable treating your pain, ask for a referral to a
pain specialist, especially someone who uses a multidisciplinary approach to
treating pain. If there is no pain specialist in your area, approach your GP —
many people with RA rely on their family doctor for prescriptions related to
pain management. As well, pain management is about a lot more than medication.
Talk to other people with RA about tips and tricks to reduce your pain.
Let’s
talk about napping, or what you refer to as Mandatory Rest Periods. Due to the fact that I have both lupus and
RA, I have discovered that napping is essential for my ability to
function. However, even after nearly
five years of living with these illnesses, napping is something that I feel
guilty about having to do and actively resist.
What do you say to those of us with RA who are so stubborn we would
rather avoid napping than deal with the outside world’s reaction to our having
to do it?
LA: Autoimmune diseases like RA and lupus come with a higher level of
fatigue — it’s a scientific fact. This is one of those moments where I’m going
to be very blunt. I’d say that you have internalized a healthy person’s
judgment that napping is indulgent and lazy. You have to ask yourself if it’s
reasonable to apply the standards of a healthy, able-bodied person to someone
who has a chronic illness (or in your case, two). Also, keep in mind that guilt
is a sign that you’ve done something wrong. Ask yourself if that’s an
appropriate feeling about getting the rest you need. Start thinking about the
benefits of napping. In my experience, taking a rest every day enables me to do
more in the long run. I work during the day, take a rest in late afternoon and
after dinner, I go back to work, feeling rested and having more energy. I also
found that calling my naps a Mandatory Rest Period helped the rest of the world
to gradually understand that my rest was a necessity, not an indulgence. As an
extra benefit, it also helped me understand the difference!
If you
could give one piece of advice for those who are new to RA, what would it
be?
LA: Talk to others who live with RA. It’s a scary time and it’s easy to
believe that your life is over. It isn’t. RA means you have to live somewhat
differently, but your life will still be there. Talking to others, especially
those who approach the situation from a place of positivity, will help you more
than you can imagine.
If you
could give one piece of advice to those who are veterans to RA, what would it
be?
LA: To never stop reading and learning about your disease. It’s easy to
get stuck in just muddling through or doing the same thing that you’ve been
doing for years that’s only sort of working. New research happens all the time,
new knowledge comes out all the time. Staying informed helps keep you ahead of
your disease and ultimately have a higher quality of life.
What
have you learned from your experiences?
LA: I’m fond of saying that RA gives, as well as takes. People usually
look at me as if I’ve grown another head when I say that. But it’s true. RA
gives you resilience, it makes you stronger. If you can live with RA, you can
do anything!
What do
you hope readers will get from your book?
LA: I hope that my book will help readers feel more empowered and develop
a sense of control over the life. I hope it will help them believe that they
can live well with RA.
In the book, you mention that this is the first in what you hope to be a three part series of books about living with RA. What will the other books focus on, and when do you anticipate they will be available?
In the book, you mention that this is the first in what you hope to be a three part series of books about living with RA. What will the other books focus on, and when do you anticipate they will be available?
LA: Book 2 will be about adapting and adjusting to life with RA, including
how to navigate the healthcare system and adjusting emotionally to living with
a chronic illness. Book 3 will be about the rest of your life — work,
parenting, social life, sex, and so on. As for when they’ll be available, that
depends a lot on how my RA behaves! I’m involved in a number of things,
including my job Community Leader for HealthCentral.com’s RA site and Show Us
Your Hands! and only have so much energy in a day. I hope to release Book 2
sometime in 2014, but will also be releasing some shorter pieces here and there
before that.
Right now
the book is available for e-readers.
Even though I have one, I am still a lover of the actual book. Any plans for a hardcopy version of the book?
LA: You’ll be happy know that a paperback edition is scheduled to be
released in May (depending on my RA behaving).
Aside
from working on your other books, what’s next for you?
LA: I’m not sure I have enough time or energy left over to do anything
other than write. ;)
Thanks,
Lene, for taking the time to visit Getting
Closer to Myself today.
You can find out more about Lene at her personal
blog, The Seated View. She is also the
Community Leader for HealthCentral.com's
RA site.
*I
received a free copy of this book from the author. However, my choice to have Lene as a guest
blogger was my choice, and had to do with my personal opinion of the book.
Thanks for posting this!! <3
ReplyDelete