Interview With Author Lene Andersen*

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?

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?

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 more information about the book at the website and blog Your Life with RA.

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.

The Private Struggle Of A Medication Transition

The last two and a half weeks have been hell for me.  They’ve been a blur, really. 

There have been some good moments, but they have been between periods of complete and utter exhaustion, fatigue in which sleep only adds to it. 

My knees have felt like they are made of glass, like they could shatter into a million pieces at any moment.  My sinuses have felt like they were going to jump out of my head.  I have had horrendous heartburn that has kept me up at night.  I’ve felt like I’m constantly coming down with something, like I am about to get sick.  But I know I’m not.  That’s just the immunosuppressant working its magic.

The worst part, though, aside from the fatigue, is the fact that I have felt nauseous and dizzy a good portion of the time.

I just hoped that in whatever way my body was adjusting to this new medication, that it would just do it already, because the last few weeks have been brutal. 

I’ve never had such side effects with a medication that have lasted for so long after I first started taking it.   

When I finally e-mailed my rheumatologist, he told me to stop taking the morning dose and just take the night one instead of both.  I guess I waited so long to be optimistic that things would get better, but then when they didn’t, the answer seemed so simple and obvious that I should have made contact with my rheum sooner.

Basically, I’ve been overmedicated.  So it seems highly unlikely that the situation would have resolved itself without a decrease in dosage.

I don’t want to give up on this medication (Tacrolimus) yet.  I know I haven’t been on it long enough to know if it is truly working.  But I also didn’t think I could survive the next month to month-and-a-half of waiting for it work, if I was going to be so non-functional.

I fell asleep in class the other day.  It has really been a struggle for me to get myself where I needed to go.  The fatigue I’ve been experiencing I haven’t seen the likes of since I first got sick, and literally would wake up, go to class, come home and sleep.  Luckily my schedule is a little bit flexible, however, I don’t like having to forego things because I’m too tired.    

I had my first mandatory labs last week.  Does it make me a bad person to wish that the blood work came back out of whack?  Well, that was before I talked to my rheum and he suggested I lower the dose.  But the reality is that the labs all came back normal.  Freakishly normal.  My liver enzymes have never been so normal.

I feel like such a jerk.  I was so adamant about not going on the Rituxan, I dreaded having to complain to my rheumatologist that I didn’t think I could wait the requisite two months to see if this stuff was going to work. 

But thankfully, it doesn’t look like we are going to have to have that conversation.

You truly don’t realize how bad you feel until you start feeling better.  In one day, I graded thirty papers.  I still don’t feel 100%, but I think I can safely say that I am finally on the upswing.  I accomplished more in one day than I have in the last two weeks combined. 

But the thing that makes it so tough to deal with is that you can’t really talk about it.  As I’ve lamented various things, my boyfriend – who has been amazing throughout this difficult period – has told me, “But you have an excuse.”  But I don’t.  At least I don’t feel like I do. 

How do you explain to people who don’t understand that you’re trying a new medication that is supposed to suppress your overactive immune system, and stop your body from attacking your organs and joints, but you just haven’t been able to tolerate the medication?  So you have been sleeping in spurts of three hours, only to be up for an hour or two, and need another few hours of sleep to recover from the time you’ve been up?  And this is after sleeping at least eight hours at night.

“Normal”, healthy people can’t begin to understand that.  And I’m glad they don’t.  But it’s hard to explain erratic, strange behavior when you simply don’t want to talk about it.  When healthy people can’t imagine being on a medication that has such an effect on your body.  Medication is supposed to help, right?  But what happens when the cure is worse than the disease?  What if you have to go through hell to see the light at the end of the tunnel?  If you haven’t been there, you don’t know, you can’t imagine the lengths you will go to in the name of health. 

But it’s so hard.  All of the medications we try for Lupus and RA – or most chronic illnesses, for that matter – have side effects.  They all have their pros and their cons.  And even when they work, they all take getting used to.  So it’s hard to explain how transitioning off of old meds and onto new ones can honestly be worse than your actual illness.  But how do you explain that to people who don’t know?  How can they possibly begin to understand that until your dose gets regulated and your body gets used to a new medication, that it’s full court press?  That it sometimes takes all the time and effort you have?  That it sucks you dry?  That it literally can all but stop you from functioning? 

I don’t know how to explain that to people who aren’t chronically ill.  And so, I think to make it easier on myself, I don’t.  But it might make things harder for me if I don’t.  So if I have to, I just say that I’ve been sick.  It’s not totally a lie and not totally the truth.  And you don’t get any sympathy from anyone if you explain that you are sick all the time.  They really don’t get that, either.

The last two weeks, I have literally had to scrape myself out of bed and drag myself to where I’ve needed to be.  I can’t really imagine how I would have gone on like that if I hadn’t talked to my rheum, and he suggested that I only take Tacro at night. 

I guess I assumed that since Tacro is used at much lower doses for those with Lupus and RA, as opposed to people that have had organ transplants, that I wouldn’t have as many side effects, either, but I was totally wrong on that front.  And this isn’t intended to me a “poor me” post.  To the contrary, I am grateful that, for the moment, every little step does not take an immense amount of effort, that I can do more than just sleep.  It’s too soon to know if the Tacro is working, but at least for the moment, I can say that it’s not destroying my life, either.  Baby steps…

When you have a chronic illness – especially an invisible one – most of the struggle is only seen by those you are most intimate with.  But the struggle feels visible to us because we live it every minute of every hour of every day.  For us, the struggle is never-ending.  We simply cannot turn our illnesses on and off at will, and neither can we truly anticipate what the effects of a medication may be.     

Patients For A Moment Shit Tactless Idiots Say Edition

For the March 2013 edition of Patients For A Moment, I asked bloggers to write a post about the worst, most stupid, offensive, hurtful, or just plain dumb comments they had ever received from someone in regards to their illness.

To start off, Aviva from Sick Momma, wrote the post “People Say The Darndest Things”.  Not only does Aviva share some of the ridiculous things people have said to her, she also shares a story of her saying something to a chronically ill friend that maybe she shouldn’t have said.  It just goes to show that even though, as chronically ill people, we tend to be more aware and careful about the things we say, we are occasionally guilty of putting our foot in our own mouths from time to time, even when we are talking about illness.  I love her honesty!

At In Sickness As In Health, Barbara Kivowitz shares with us the post, “Dumb Things Practitioners Have Said”.  She says that the dumbest thing a doctor has ever said to her was suggesting her partner wait in the waiting room.  Barbara says that couples are dealing with illness together, and even though, in most cases, only one partner is sick, they should both be viewed by doctors as integral parts of illness experience. 

Duncan Cross shares the post, “DO NOT Guess My Weight”.  While the title of the post made me think of those giant scales at carnivals where a carnival worker tries to guess your weight, and if they don’t, you win a prize, this post is actually very serious.  Duncan says that he usually tries not to let the stupid things people say bother him, with one exception – when people comment on his weight and offer up wishes of being able to lose weight like him (which, of course, he doesn’t do on purpose and is due to his illness).  I love his wry humor!       

Many of us who have been on Prednisone have experienced comments like Duncan has about our weight, but in the opposite direction – of how we’ve gotten rounder or our face has gotten fuller.  And it’s like, thank you captain obvious, as if I hadn’t noticed this myself without needing someone to make it 100% clear to me.  Anyway, I digress…

From Sometimes, it is Lupus, Iris Carden shares two posts with us.  The first is a post titled “Helpful Advice”, in which she talks about well-meaning people who offer advice when they have no clue about chronic illness.  The second is a post titled “At Least You Don’t Have Cancer”.  Iris says that a lot of times, people will minimize her dealing with Lupus and tell her that because she doesn’t have cancer, she doesn’t have it so bad after all.  I personally hate it when people compare suffering.  The who-has-it-worse game isn’t productive, in my view, and I totally understand Iris’s frustration in this regard.

I’ll end this edition with my post, “Shit Tactless Idiots Say To Sick People,” which was the inspiration for this edition of PFAM.  In the post, I went through some of the dumbest comments I have heard in regards to my illnesses and possible come backs.

No one who has a chronic illness is immune to receiving comments from others that at best frustrating and at worse make us want to never share anything about our illnesses with others ever again.

Thanks to those who submitted their posts for this edition.   

The next edition of PFAM will be April 15, 2013, and will be hosted by Selena at Oh My Aches and Pains!.