Introducing Your Life with Rheumatoid Arthritis

I am super excited to share Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain.  The author, Lene Andersen, is both an awesome gal in the inflammatory arthritis community and an excellent friend.  I have had the pleasure of working with Lene at Health Central and as a fellow board member on Show Us Your Hands! 

While I have known for some time that Lene was writing a book, I wasn't sure what the outcome would be.  All I knew was that she was always crazy busy writing her book. Once I had a chance to read it, I was pleasantly surprised at how easy and comfortable it is to read.  Lene shares some of her personal experiences, but in usual Lene style, backs everything up with research she has done over the many years she has lived with rheumatoid arthritis. This book covers topics that will help people who need guidance in overcoming the shock of being newly diagnosed, making decisions about medications, and a variety of alternative care ideas you can add to your mix.  Most importantly in my opinion, Lene shares tips on how to go about leading a healthy and happy life after being diagnosed with RA. 

Read through the following questions I had for Lene and then look for a little surprise at the end. (Yes, it involves winning something special.)    

1. Lene, welcome to The Life and Adventures of Cateepoo. Before we dive into your book, can you give my readers a short biography of yourself?

Thank you so much for hosting my first stop on the blog tour, Cathy!

I was born and raised in Denmark, hence the funny spelling of my first name. The first symptoms of juvenile arthritis arrived when I was four years old and I was diagnosed at age 9. This was before there were any effective treatments, so I was in a power wheelchair full-time by 16. My family and I moved to Toronto, Canada in the early 1980s. I have a Masters degree in Social Work and have worked in a number of different fields, including counseling and community and policy development. After a massive flare in 2004, I decided to pursue my lifelong dream of becoming a writer.

2. What drove you to write this book?

I wanted my 40+ years of having RA and learning how to live with and around it to be useful to others. The idea became the Your Life with Rheumatoid Arthritis series. It is designed to help empower people to take back control and find a way to live well with RA, so their life is first and the disease second. The first book, Tools for Managing Treatment, Side Effects and Pain, deals with the first step in the process:of finding ways to push the effects of the disease to the back burner. Once you do that, you can focus on the next steps. The next two books in the series will deal with other aspects of living well with RA.

3. In your opinion, why is medication the first and most important route to take with RA?

I grew up in a time where there were no treatments. At that time, RA meant inevitable disability. This is no longer the case. These days, DMARDs and the Biologics can prevent the damage that causes disability and minimize the impact of the systemic effects of RA, for instance lowering the risk of heart attacks. These medications are the only treatments that have been scientifically proven to suppress the disease and stopping the damage. Unfortunately, we are not yet at a time where they work for everyone, but most will be able to have some effect, slowing down the damage. If you slow down or stop RA, you will be able to have better quality of life and be able to participate in your family, your work, your community.

4. While your book focuses on medication and everything you need to know about them, from types of medication, cost, side effects, and more, you also share several home remedies, such as garlic, hot drinks and cranberry juice. What is your favorite home remedy and how does it help you?

I've always been a bit of a magnet for side effects. Over the years, I’ve learned a lot of different tricks to manage them and I share them in the book. One of my mainstays is related to the upper respiratory infections (a.k.a. sinus infections) that are common when you take immunosuppressants, such as methotrexate and Biologics. I used to get a lot of really bad sinus infections and had to be on antibiotics every couple of months. That’s just not good for you. After a couple of years of that madness, I discovered a simple regimen to keep sinus infections at bay. You need three things: a lot of water, a lot of pineapple juice and a lot of garlic. The water dilutes the crap — that ought to be a medical term — in your sinuses and pineapple juice has an anti-inflammatory enzyme that allows the crap to drain. The garlic has antibacterial qualities, helping to prevent infection (and also tastes really yummy). Thanks to this regimen, I haven't taken antibiotics for sinus infections in almost 5 years! Whenever I feel a sinus infection coming on, I increase the amount of water, pineapple juice and garlic and am able to beat them back.

5. In chapters 33-37 you describe many types of alternative care to add to your mix. I like that. Everything from acupuncture to saying "no" were discussed. Can you share a couple of others with us?

Although I am unashamedly pro-medication, I believe alternative medicine is a really important tool in improving your general health and managing your RA symptoms. In my experience, integrating allopathic (Western) and alternative medicines can help you feel better than either of the two separately. I'm a big fan of acupuncture — it's been part of my health care since I was 12. Shiatsu massage has also been tremendously helpful for me. Another favorite is meditation, which is very helpful in dealing with pain and the stress of having a chronic illness. My favorite Toronto pain specialist, Dr. Jan Carstoniu, is quoted in the book with a terrific meditation technique: Sit down. Don't move. Shut up. Do that for 20 minutes a day and you'll feel better!

6. I was pleasantly surprised to see you had devoted a section of your book to "sex." Why was this a necessary part of the book?

You're going to be even happier with Book 3 — it'll include a much more detailed discussion of sex! Sex is an important part of being a whole human being. Unfortunately, it's often put on the shelf when you have RA. This can be because of stress, body image issues or because you or your partner is afraid it'll make you hurt more. Being physically intimate pulls you out of the place of stress, worry and pain that is so often part of RA. Sex can help you feel better about your body and as an extra benefit, the endorphins released during orgasm are really excellent painkillers! There are things you have to be careful of, but overall, there's no reason why RA should prevent you from expressing your sexuality.

7. Where else can we find your work?

In addition to the Your Life with RA website and blog, I write a personal blog called The Seated View. I am also the Community Leader for HealthCentral.com's RA site.

Thanks so much for having me as a guest on your blog!

Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain is available from Amazon for the Kindle. If you do not have a Kindle you can download a free app for computer, tablet and smartphone here.

Now for the surprise!  Lene is giving away a Kindle version of her book to two randomly chosen winners.  To enter the drawing, answer the following question in the comments section or on my Life and Adventures of Cateepoo Facebook page:

What kinds of alternative medicine have you tried?"

*Drawing will be Monday, March 4, 2013.

 

Paleo Diet According to Cateepoo

Diet has been a part of my rheumatoid arthritis plan pretty much since the very beginning . When I was first diagnosed and still in crazy mode, my brother told me about an acquaintance that went into remission using diet alone. I remember feeling like a seed had been planted in my mind with that story.  As I started on  medications without much success, that seed began to grow.  I went ahead and asked my brother to find out more about what his acquaintance was eating.  I laugh now because his diet consisted of salmon and pineapple.(A very limited Paleo diet?)  That was pretty much it.  I knew at the time I didn't have the willpower to live on salmon and pineapple alone, although that does sound like a yummy meal.  Instead, ten months after my diagnosis I met with a naturopath and began a journey of eliminating foods that are harmful to my body and adding ones that nourish it.

Until 2010, a good diet for me was low in sugar, gluten free and mostly dairy free. (In the beginning it eliminated nightshades, sugar, citrus, peanuts, dairy, gluten, and caffeine.) With my natuorpath's help I completed a successful elimination diet that allowed me to get off prednisone and reduce all medications to their lowest amounts. I went into what my rheumy called, "remission".  I stayed there until I got cocky and started adding a lot of gluten free baked goods back.  Sugar is my worst enemy.  After many elimination diets, I know this to be true.  Things got bad, I went off medications, and a new journey began.  I tried the Body Ecology Diet with terrible results (Not that the BED is bad, it just wasn't good for me.) as well as many other alternative types of treatment.

In 2010, I decided to try the Paleo Diet.  What I liked about this diet is it included lots of free range meat (we have been buying from a co-op for over ten years), organic vegetables (participated in CSA's for many years), and eliminated SUGAR and all grains. It met my philosophy of healthy foods. Having been gluten free for so many years, I found the Paleo Diet to be liberating.  I no longer went to restaurants or searched recipe books looking for alternatives to wheat based foods.  Instead, I started enjoying the wonderful foods that come from meat, vegetables, and healthy fats.  I felt like I had entered a whole new world.  Food had never tasted so delicious in its natural state.

I believe diet is key to everything.  It nourishes us, provides a happy mood, cleans our body, increases its immunity, and keeps us looking and feeling healthy.  For diet to not be a recommended lifestyle change with any disease is a disservice, in my opinion.  However, I had to find a common ground with diet that satisfies me.  When I set my mind to something, I follow the path I have laid out for myself.  What I have discovered over the years is I can be a diet Nazi.  The need to feel better has made me follow a diet to the T which also means to the point that I am mentally exhausted.  This is where I have grown the most with diet.  I have learned to let go a little and enjoy life.

In the past when following a strict diet, I have sat in restaurants watching others eat in fear of contaminating myself with a food.  I have stressed myself out with each flare that I ate an unintended food.  Although I am still conscious of what might have created a flare, I no longer do that.  I now have a few basic rules for myself:

• ALWAYS eat gluten free.
• Enjoy foods like meat, vegetables, and fat. (restaurants provide well for this rule) 
• Have fun with meals and relax.  

I do occasionally eat grains.  Once a month my daughter and I go out for breakfast.  We order gluten free pancakes (a huge serving of butter in place of syrup) with eggs and sausage.  Doing it feels indulgent and fun!  I have a glass or two of wine on the weekends with my husband.  I like the relaxed feeling I have after a long week.  I add half a serving of rice to my Chipotle meal that we have once a week.  Sometimes I like to buy chocolate covered almonds with sea salt at Trader Joe's (if you haven't eaten them before, DON'T.  They are highly addictive.)  These are my some of my guilty indulgences. What I have found is that when I allow myself a list of indulgences, rather than following a super strict Nazi diet, I am mentally happier.  This balance is the piece that was missing in the past.  I can still feel the stress and pain in my body from past experiences of stressing so much over the food I ate.

The Paleo diet might mean something different to me than it means to someone else.  To me, it is about

• Choosing high quality foods for myself and my family.
• Cooking at home 95-98% of the time.
• Avoiding processed foods.
• Finding fun in making things like fermented sauerkraut and kombucha.
• Always having a carcass ready to throw in the slow cooker for bone broth.
• Trying new vegetables.
• Finding contentment in knowing I have a new stock of bacon grease in the refrigerator.
• Discovering a new way to use a vegetable.  Rather than using pasta with meatballs and sauce, we used shredded cabbage.  Delicious.  Vegetables can be used in a variety of ways that enhance a meal.
• Planning ahead so that I always have food with me and not being embarrassed to pull out my own food..  If I know lunch will be served at work, I ALWAYS have a lunch bag full of food ready since generally lasagna or pizza is served. I can't tell you how many times people have commented that the food in my Thermos smells better than what they are eating.  :)
• Preparing food in the slow cooker on busy days. 
• Understanding that my body needs to be nourished and feeling satisfaction knowing that I am eating healthy foods in their original state.
• Enjoying cooking.  I have found that with simple ingredients like meat, vegetables, herbs and spices, along with some fat, creating meals is easy!
• Hearing my son say, "Sweet potatoes with sausage and eggs are one of my favorite breakfasts."  It is one of mine too. I am glad that eating Paleo has also created healthy eating for other family members.

Is my version of the Paleo diet perfect?  Probably not.  There are definitely a few things that need to be dialed in and when life isn't so stressful, they will be.  But for right now, I think it is perfect for ME.  My life is pretty stressed right now with a lot of work and family commitments, so finding a balance of what works is better than letting the diet go completely.  What I have enjoyed about my journey with food is that it is always changing and always getting better!

I HATE winter!

My family and I have lived in the Chicago area for almost 15 years now.  The first few years I kind of liked winter here.  Lots of snow was exciting and fun.  However, over the years, I have found myself in a love/hate relationship with winter, leaning more on the HATE side.  The first snow, I love.  I get up early to make sure Izzy and I are the first walkers of the day.  There is nothing better than the calm that comes after a snow.  I come back from a long walk refreshed and happy, marveling in nature.  It's the preceding days that I hate.  The snow melts a little and refreezes.  Each footprint in the snow has frozen over so when you try to avoid the slippery sidewalks, you end up nearly twisting an ankle as you walk on top of previous walker's boot prints.   I find myself silently yelling at neighbors who don't shovel their sidewalks and neighbors who let their sump pump empty directly onto the sidewalk so there is a heavy sheet of ice.  I end up returning home angry at the world and often that attitude stays with me all day.  This is what happened yesterday.  I took a walk and felt angry all day. My walks are what generally calm my mind and make the rest of the day doable.  I feel like this time of the year, I struggle.      

Yesterday, after it had rained the night before, my walk was miserable.  A lot of the snow had melted but there were so many patches of ice on the sidewalk and in our yards that walking was more like participating in an obstacle course than being a serene time of the day.  I worried about my border collie Izzy and myself slipping. I came home and told my husband, "I hate living here."

As I reflected on "I hate living here" later in the day, I realized I hate many things about winter.  It seems like forever since we have had sunshine for more than a few hours at a time. Whenever the sun is out, I want to absorb as much as I can, as if my body is starving for it. By February, I am absolutely sick and tired of putting on four layers of pants, two shirts and my coat, a face mask, a hat, and then a big hat over that one along with big clunky gloves and boots to insure the Rayaund's in my hands and feet can make it through a 35-45 minute walk.  I am tired of wiping down my border collie when we get home because she smells like a wet dog who then rubs herself all over the furniture.  I am tired of having smashed down hair from wearing a hat everywhere I go, but know that without it, my ears which also seem to deal with Rayaund's, become so painful I can't handle it.  I'm tired of brushing against a dirty car and looking out of windows that have dirt, salt, and other winter debris. I 'm tired of everything just being dirty!  By February, whether we have tons of snow or not, I am tired of living in the Chicago area.  I told my husband that I could handle the cold and snow if the sun was out.  I think it is true.  I think more than anything, I just miss the sun.  I need it in a bad, bad way.  

Today, I am going to focus on getting my mind out of the "hate" mode and back to a happy place.  For starters, I am going to focus on the positive of winter:
1.
2.
3.
Help!!!!!  I can't think of anything today!  I know there are a few.

Ok, change of focus.  Rather than focus on what I like about winter, I am going to spend time today visualizing myself on a beach with the sun shining down on me.  I am going to take time to read encouraging words, meditate, make delicious food, and laugh (even if I have to force it).  I'm going to clean the house and declutter my desk, because even though I can't take away the dirt outside, I can clean it up inside.

What do you do about winter blues?

My Truce with Fat

Last year was full of good things, but in reality, way too many changes at once that consumed much of my time and energy.  I entered 2013 feeling full of stress and 15 pounds heavier than I was when 2012 began.  I knew I had to make some changes when classes and private tutoring started back up after the holidays. 

My husband was getting ready to read Deepak Chopra's new book Super Brain: Unleashing the ExplosivePower of Your Mind to Maximize Health, Happiness, and Spiritual Well-Being, so I decided to join him.  While I have skipped around the book a lot, what I found in one chapter has dramatically changed the course of how I am now choosing to organize my time and live my life. With 10-15 pounds to lose, I was drawn to the chapter on weight.  Towards the end of the chapter Chopra says to “make a truce with fat.”  A truce with fat?  Exactly.  Instead of feeling angry at the fat that has developed on my hips, stomach, and breasts, start looking at what is causing that fat.  What is missing in my life that is causing that fat to be there?

It didn’t take long to answer that question, in fact, I have known for some time.  While I love the teaching field I am in, I feel overworked and overstressed by the schedule I have set for myself.  When I looked at my options, I knew there wasn't anything I felt ready to give up for now.  So, I needed to find a way to work more efficiently so I am not spending 100% of my time thinking and worrying about what needs to be done next.  

• I scheduled specific days and times on my calendar to accomplish all of my “work”.  Sundays are now official “non-work” days except for an online meeting I have once or twice a month. In 2012, they often ended up being non work days because I kept putting the work off, but all day I felt anxiety about not doing anything.  Mentally taking the day off feels like it gives me so much more time during the day to enjoy things I want to do.  
• Rather than planning a whole afternoon to clean the house and then finding I am too tired, I am doing one or two small things a day.  (The house is actually staying cleaner.)
• On Tuesday and Thursday, I am either driving or teaching a class for 12-13 hours of the day.  I have a short 1.5 hour break between daytime teaching and night teaching.  In 2012, I rushed home to make dinner and eat which usually resulted in crappy meals and eating on the run.  This year, I am preparing a meal the evening before and throwing it in the slow cooker before heading to work in the morning.  Last night my husband asked, “You don’t have to work tonight?”  I think he was surprised that I was casually sitting at the table eating with everyone else rather than rushing around before heading out.
• I bought some Eucalyptus Epsom salt and have been treating myself to a hot bath when I get home.
• I have made daily meditation a priority.  Each day of meditation seems to calm my mind more and more throughout the day.  If I plan my morning right, I can find 15 minutes to do this one thing for myself.
• Rest.  On Tuesday, I felt some rheumatoid arthritis pain and fatigue.  I chose to spend thirty of my 1.5 hours at home napping.  On Wednesday, I played hooky from half of my private tutoring students and laid in bed watching a movie.  I have decided I am going to do more of this when my body begs for it.
• Making daily goals that are small.  My sister and I text each other every morning sharing one small goal that we want to work on.  Sometimes we adopt the other’s goal and other days they are completely different.  Having her support and encouragement, as well as having someone to be accountable to, has really changed my perspective during the day.
• Laugh.  I am really trying to make this more a part of my life.  I like laughing and I know how great I feel when I do it, but I often let stress and schedules take over.  Laughter is often what connects my family and in turn gives my day a powerful boost.

I have found that by simply scheduling my time to be a more efficient person, I am accomplishing more and reducing my stress levels a lot while also doing some luxurious things for myself such as napping, taking a bath, and enjoying a good laugh.    

Most importantly, I have made a truce with my fat.  Rather than using negative energy being angry at it for what is missing in my life, I have decided to embrace it and thank it for being a reminder that something is out of balance in my life.  I have no doubts that as I find the missing pieces, the weight will no longer be needed and will melt away.  For now, it feels good to take the focus away from something negative and instead put it into nourishing myself.