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Art Therapy & Spondylitis : Virtual Round Table

As part of our pre-group roundtable we are looking for participants with spondyloarthritis.

Participation in this roundtable will assist our team of Scientists and Art Therapists to better understand the specific needs of people with spondyloarthritis in the realization of artwork. By participating in a short art activity and sharing your comments will help in the planning of a virtual art therapy workshop that will be offered to Canadians living with spondyloarthritis. 

This is an opportunity for you to learn about art therapy.  

  • A remuneration of $50 will be offered for your participation  
  • No artistic talent or special skills are required  
  • Participation is confidential. 
WHAT YOU NEED

Ability to connect via zoom
For the art activity you need: a few magazines to cut images from, scissors (optional), a paper support, a glue stick and a pencil (compensation can be provided).  


FOR MORE INFORMATION AND REGISTRATION

Please contact:

Wendy Gerhart
Email : execdirector@spondylitis.ca
Telephone : 705-715-2162

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If you’d like further insight into Art Therapy, Click Here for our resource.

 
 

Nutrition

Nutrition and chronic inflammatory illness

We know how hard it is to find trustworthy information online. It’s even harder when you are looking for information on health and nutrition. People are constantly pushing their latest supplement, the latest cure-all diet, or making you feel bad about yourself. Not here.

We simply want to bring awareness to inflammatory arthritis and help YOU feel better!

Introduction

Introduction

The problem with nutrition information online

There is very little information on arthritis that is specific to psoriatic arthritis, ankylosing spondylitis, or any other condition that falls under the umbrella of spondylitis. 

Most of the websites that do exist out there are trying to sell something, so it is hard to trust anything they have to say.

They also seem to suggest that it is your fault when you have pain by suggesting you could cure your inflammation by following their special plan. Frankly, that is just insulting and can make you feel helpless.

For those of us who have a background in nutrition science, it is obvious that most of the advice online won’t help. Some of it could even be harmful, sometimes in subtle ways.

What nutrition can actually do

When you are in pain, it is hard to prepare any food – nevermind cooking from scratch. It is so easy to forget about eating healthy and just concern yourself with putting food in your belly. This is where the negative spiral can come it – just like with exercise, sleep, and mental health.

Pain –> Sitting the couch —> Muscle pain from being inactive
Pain –> Eating whatever is easiest –> Feeling off because you haven’t eaten well
Pain –> Unable to sleep –> Feeling tired the next day –> Drinking coffee –> Not able to fall asleep again

All of these combine into a perfect storm for depression, anxiety, and more pain. This suffering is what we can prevent, lessen or even heal with a healthy lifestyle. The medical treatment will address your arthritis. Your lifestyle can either cause or prevent the additional suffering that can come with having a chronic disease.

What is a diet?

Diet has come to mean a restrictive diet that makes you feel deprived while you attempt to lose weight. But did you know that is not what diet originally meant? 

Diet originally meant ‘usual or prescribed pattern of eating’. Back when dietitians chose the name for our profession, this was the only thing the word ‘diet’ meant! 

It is important to have a healthy lifestyle. Habits that help keep you active, eating well, sleeping well, and otherwise feeling good, will help prevent the suffering that comes with a chronic disease. Building those healthy habits can help you improve your health. It might not be magic, but it can help make things better.

Bottom Line

There is no miracle cure for any kind of arthritis or spondylitis. No single solution will help everyone. But there are common elements that can help. 

Being active, getting enough sleep, eating well, finding ways to reduce stress and improve your mental health – they all can help. You will feel better when you find ways to build a healthy lifestyle. Your joints might feel better or they might not, but you, as a whole, will feel better with a healthy lifestyle.

In articles to follow, we will share information and suggest ways you might improve your health. If you have any doubts about whether something is right for you, or if you have specific questions please consult with your health care team: 

  • A registered dietitian for food and nutrition questions, 
  • Your primary care provider or pharmacist for medication questions, 
  • A kinesiologist, physiotherapist, or occupational therapist for exercise questions. 

The Mediterranean Diet

The Mediterranean Diet

The diet with the most research across all kinds of health concerns is the Mediterranean Diet. It is based on the traditional diets of people living around the northern shores of the Mediterranean Sea. 

It is an anti-inflammatory diet so it might even help your joints. Even if it didn’t, it has tons of other benefits and it tastes great!

It has been shown to reduce the risk of developing and help treat:

  • Heart disease
  • Diabetes
  • Anxiety and depression
  • Digestive issues

How is the Mediterranean Diet different?

Compared to the standard North American diet, the Mediterranean diet is high in:

  • Fruit (daily)
  • Vegetables (daily)
  • Beans, nuts, or seeds  (daily)
  • Whole grains (daily)
  • Fish (2-3 times per week)
  • Olive oil is the main source of fats (daily)

It is moderate in:

  • Dairy 
  • Poultry
  • Eggs

It is low in:

  • Sweets
  • Red meat (beef, pork, and other animal meat)

The Mediterranean Diet also emphasizes high-quality food, locally grown if possible, and preparing and eating food together with other people.

What supplements should I take on the Mediterranean Diet?

When following the Mediterranean Diet, you shouldn’t need any additional supplements. By including at least 2 servings of fish per week, you will be getting plenty of EPA and DHA (the types of fat in omega-3 or fish oil supplements).

By including beans, nuts, or seeds every day, you’ll be getting plenty of magnesium, zinc, and other minerals that we tend to not get enough of in North America.

In fact, the Mediterranean diet is among the most well balanced diets we know of, which is why it is anti-inflammatory and beneficial for so many health conditions.

If you have food allergies or concerns that you might still be low in any vitamins or minerals, make sure you see a Registered Dietitian to ensure you are covering all of your bases. 

How to start eating more Mediterranean

The most important thing to remember is that behaviour change doesn’t happen overnight. The goal is to change your habits and develop a new lifestyle. It could even lead to a new relationship with food. 

In fact, it is better if you don’t try to change everything overnight.

A more gradual shift will allow you to actually build habits, rather than trying to white-knuckle your way through yet another diet. Consider your current habits and choose one small thing to change. Focus on how great it tastes and how the food makes you feel.

Here are a few small changes you can try this week:

  • Use olive oil (virgin or extra virgin) instead of butter or other oils while cooking 
  • Have berries for dessert 
  • Have oatmeal for breakfast, instead of cold cereal – or add in some nuts or seeds if you already have oatmeal 
  • Add more vegetables to lunch or supper 
  • Make your own salad dressing with olive oil, herbs, and balsamic vinegar
    (3/4 cup olive oil, 1/4 cup balsamic vinegar, add herbs and spices as desired) 
  • Try using the plate method: 
    • 1/2 plate vegetables, 
    • 1/4 plate whole grains or starches, 
    • 1/4 plate protein (poultry, fish, or beans), 
    • fruit for dessert, and 
    • your non-sweetened beverage of choice (such as water, milk, or brewed unsweetened tea)
A great example of a Mediterannean diet meal

Bottom Line

The Mediterranean Diet is an anti-inflammatory diet that may help manage your arthritis. It has been shown to help with diabetes and heart disease, including cholesterol and blood pressure. 

A few small changes can start you on your journey towards a healthier diet and a healthier lifestyle. What are you waiting for?

The Anti-Inflammatory Diet

The Anti-Inflammatory Diet

What is the anti-inflammatory diet and why should I eat it?

Anti-inflammatory is all the rage. You can get food, drinks, supplements, and skin products to fight inflammation. But what is inflammation? What does it mean to eat an anti-inflammatory diet? And most importantly, will it help your joints?

An anti-inflammatory diet might help prevent arthritis. It might improve your symptoms. But pay close attention to the word “might”. 

There is not much research on diet and arthritis in humans. There is even less research for spondyloarthritis. So we don’t have much to go on.


What is a diet?

Diet has come to mean a restrictive diet that makes you feel deprived while you attempt to lose weight. But did you know that is not what diet originally meant? 

Diet originally meant ‘usual or prescribed pattern of eating’. Back when dietitians chose the name for our profession, this was the only thing the word ‘diet’ meant! 

Why should you eat well?

You know how it feels when you don’t eat well:

  • Heartburn, bloating, constipation, diarrhea and other digestive discomforts (especially true if you have IBS or IBD)
  • Less energy and motivation to be active, cook, clean, or anything else – generally just feeling “blah”
  • You end up getting so hungry before meals that when you do eat, you eat very fast, get too full, and feel unwell. 

And that’s not even getting to the question of whether or not an anti-inflammatory diet will reduce your joint pain. It might, or it might not. The research is unclear so far.

We do know, however, that an anti-inflammatory diet, such as the Mediterranean diet, has other great benefits.

So while we can’t say for sure that an anti-inflammatory diet will help your arthritis, we do know it can improve your wellbeing. Remember, you are more than your arthritis.

What is inflammation?

Inflammation helps you heal from injuries and it fights bacteria and viruses in your body. It is an important part of keeping you healthy.

Inflammation can’t sit still, it has to do something. When it starts seeing your own body as a target, you have an inflammatory disease. Spondyloarthritis (inflammatory arthritis) is one type of inflammatory disease.

Inflammation works through messengers. Each messenger brings a different message through your body. There is one for everything that needs to happen in your body, from hunger to heartbeat – including inflammation.

When it comes to inflammation messengers, there are two groups: Pro and Anti. The pro-inflammatory messengers put the system on high alert and increase inflammation. The anti-inflammatory messengers tell your body that everything is a-okay and reduce inflammation.

What is an anti-inflammatory diet?

An anti-inflammatory diet is a pattern of eating that may reduce chronic inflammation. 

The science around this is fairly new, but it is growing. From the research that has been done, it seems some patterns of eating encourage our body to make more of the anti-inflammatory messengers and less of the pro-inflammatory ones.

An anti-inflammatory diet is a pattern of eating that might prevent or reduce chronic inflammation. The overall pattern is what is important, more than any single food choice. 

Even the Mediterranean diet, which is the most researched anti-inflammatory diet, includes sweets every now and again.

How do I start an anti-inflammatory diet?

An anti-inflammatory diet is a pattern of eating, and the longer you follow it, the more benefits you’ll see. The anti-inflammatory diet we recommend most is the Mediterranean Diet. It is a well-balanced, delicious way of eating that you can follow, and enjoy, for life.

What we really want is to change our behaviour and build new habits. There is a lot that we can talk about when it comes to behaviour change and habits but the most important thing to know is:

“What works for someone else may not work for you. What works for you may not work for someone else.”

It is a process of trying out different ways to make a habit stick. When something doesn’t work, there are many reasons why that could be. It might not have been right for you. Maybe there is another step you need to take first. Don’t give up. Find another way, or simply try again. But remember, simple doesn’t always mean easy.

Bottom Line

An anti-inflammatory diet won’t be a magic solution, but it could help. It is also full of delicious foods that also help prevent or manage heart disease, diabetes, gut health, and mental health. There are lots of possible benefits, and almost no downsides. Why not try it?

To learn more about what an anti-inflammatory diet looks like – check out our article on the Mediterranean Diet!




Additional Resources:

Diet & cognition in older adults: https://www.frontiersin.org/articles/10.3389/fnut.2016.00022/full

The Mediterranean diet found to improve depression https://www.tandfonline.com/doi/full/10.1080/1028415X.2017.1411320

Nutrition & Mental Health: https://journals.sagepub.com/doi/full/10.1177/2167702616641050

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About the author : Samantha Holmgren, RD is a registered dietitian in Northwestern Ontario who has psoriatic arthritis. By day, she is a jack-of-all-trades rural dietitian. Online, she helps people with spondylitis take charge of their life by focusing on self-care: samanthaholmgren.ca

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Reviewer: Audrey Boyer, RD is a public health nutritionist and fitness instructor in northern Saskatchewan with ankylosing spondylitis. She is involved in various groups that strive to promote health in the north and across Saskatchewan. She is an involved mom of three active, fun kids and is lucky to live near the lake to enjoy kayaking, boating, hiking, and cross country skiing.

Gerald's Story

Hear former CSA president Gerald Major tell his story and put his life on display to create awareness in honor of national Psoriatic Arthritis Awareness Day.

Catch the Facebook Live Chat event here:
https://www.facebook.com/events/507853236461725/

Marilyn's Story

Getting the right diagnosis changed my life

Like so many Canadians, Marilyn Walsh had her life plans derailed by the devastating effects of arthritis. Fortunately, a proper diagnosis and treatment helped correct years of pain and suffering, and now Marilyn is devoted to helping others.

Marilyn, a resident of Hamilton, has a passion for the medical field. She graduated from Mohawk College’s nursing program, but unfortunately the career she loved was short-lived thanks to the onset of ongoing back pain and stiffness that made simple daily tasks almost unbearable. She sought help but it wasn’t until she was 35, after 12 years of living with the pain and mystery of her condition, that Marilyn would finally receive a correct diagnosis: ankylosing spondylitis (AS), an aggressive form of inflammatory arthritis that primarily targets the spine.

At the time of her diagnosis, Marilyn’s condition had deteriorated so much that she could barely move her head. She also had severe pain and swelling in numerous other joints throughout her body. She moved like the Tin Man from the Wizard of Oz, but there was no ‘oil can’ in sight. Every breath felt like her ribs were breaking.

While much of the damage done to her body over those years is irreversible, hearing that she had an incurable chronic disease still came as somewhat of a relief.

“As odd as it sounds, that was one of the best days of my life because it meant that after all those years of suffering and having my mental health and credibility questioned, I had the validation that I did, indeed, have a significant physical condition and could, therefore, begin proper treatment.” It also meant Marilyn could start putting together a concrete action plan to build her coping skills and regain some of her mobility and quality of life.

There was a long way to go: prior to her diagnosis, there wasn’t an aspect of Marilyn’s life that wasn’t affected by arthritis. The inability to work impacted her standard of living, and left her feeling isolated from the world and people outside her home. Even sitting for long periods was difficult, which made typical social engagements like dinner or a movie very difficult. From the start of her day to the end, ordinary activities most people take for granted were extremely challenging. Through it all, she also found that people can be judgmental and insensitive when they don’t understand someone’s special needs. The fact that her disease was largely invisible to others made them question her integrity and credibility. It was difficult to live with, but it did teach her to become much more understanding of other people’s challenges.

With an accurate diagnosis finally in hand and a more targeted treatment plan that included biologics, Marilyn’s quality of life received a sudden and lasting boost.

Now in her 50s, Marilyn’s condition has improved to the point that she has been able to fuel her passion for the medical field, volunteering as a patient advocate and demonstrating basic musculoskeletal examinations to medical students. Marilyn also sits as a board member and branch leader for the Canadian Spondylitis Association (CSA), where she represents, supports and educates people living with AS and other forms of spondyloarthritis. She is also very active with the Arthritis Society, participating in the Walk for Arthritis each year since 2011. Additionally, because life happens regardless of what you’re going through, Marilyn balances her disease and all this activity while being the sole caregiver for her elderly parents.

“Arthritis won’t stop me from living life,” says Marilyn. “I sacrificed a great deal when I was younger, but now that my condition is stable I strive to give back to my community and enjoy time with friends. Most importantly, I support my elderly parents who were there to support me during some very trying years. I am very grateful to have the ability to do these things at this point in my life.”

Original Source:

https://arthritis.ca/living-well/what-s-possible/success-stories/getting-the-right-diagnosis-changed-my-life?CSA_Website

Ashley's Story - Young Adult Feature

Ashley was diagnosed with Psoriasis at age 10 - but was never warned that 30% of people with psoriasis would develop Psoriatic Arthritis.    She pushed back on her doctor and demanded further diagnostics.
Ashley started developping Psoriasis at the age of 10, but began experience arthritic symptoms 13 years later.

My name is Ashley and I am 28 years old. I was diagnosed in 2014 with Psoriatic Arthritis and in 2017 with Fibromyalgia. I’ve had Psoriasis since I was about 10 years old, but I was never warned by my doctor’s that 30% of people who have Psoriasis would develop Psoriatic Arthritis. I started to have pain and swelling in my early 20s, but I chalked most of it up to having a physically demanding job. I was 23, I had just moved in with my boyfriend and I was in my last year of my Master’s degree. The sign that things were really not right in my body began when my toes swelled and started to look like sausages and the swelling would not go away with ice or medication. I pushed back on my doctor, who told me that I was just wearing bad shoes, and demanded that she X-ray my feet. I knew that something was wrong in my body, but I did not know what yet. When she got the X-rays back, she saw the signs of arthritis and knowing that I had Psoriasis, referred me to a Rheumatologist immediately. It took several months before I had an appointment to see the Rheumatologist for the first time and my body quickly deteriorated. I started to have a lot of swelling in my toes and fingers. I had pain in my knees, my spine, and my neck that never seemed to lessen. I finally saw a Rheumatologist and began cycling through treatments and medications, trying to find something that worked for me. I tried anti-inflammatories and DMARDs, like Methotrexate and Leflunomide. I learned to self-inject my medications. My pain only got worse. I started having difficulty walking and going up and down the stairs. I had trouble managing working and going to school, with the constant pain that I was in. I started using a cane and relying on assistive devices to move around. 

I started my first biologic in 2016 – Humira. I was so excited, because I thought that this would be the treatment that I needed. I thought it would be a miracle drug for me and I would have my life back to the way it was before. Even though Humira was the start of a cycle of biologics, I did not give up. In 2015, I finished my Masters’ of Information Science degree at the University of Toronto. 

In 2017, Ashley was married to her partner, who has been a big source of support through her challenges.

In 2017, I married the love of my life. There were times when my pain and my treatments failing brought me down, but he has always been hopeful that things would get better. He’s stayed with me through never-ending doctor’s appointments and constantly changing medications.

With proper treatment, Ashley was able to ditch her cane and live a better life.

In 2018, I started Cosentyx. It wasn’t a miracle drug, but my pain reduced and my swelling was almost gone. In the same year, I started getting nerve block injections in my trigger points. I was able to ditch my cane and start moving on my own again. Later that year, I started a job that I love, in my field and using my degree. I love to travel and have taken two Caribbean cruises. This year, I climbed to the top of the High Temple of Lamanai in Belize, which I never would have been able to do a year ago. I love the theatre and go to the Stratford festival every year. At home, I love to cuddle with my three cats – Rescue, Celes, and Mr. Mittens. I know that I have limits in what I can do in a day and I use my rest time to snuggle the cats and spend time with my husband. Having arthritis has made me realize how important it is to listen to your body and take care of yourself. When you know that there is something wrong, you need to advocate for yourself, even if your doctor or your family do not understand. And most importantly be kind to yourself and to everyone around you. We all need to rest and take time for ourselves – some of us more than others.

This story is a part of an ongoing feature on Young Adults, as part of our Arthritis Awareness Month. Read more stories here.

Katie's Story - Young Adult Feature

“God gives challenges to those who are strong enough to overcome them” ~ Unknown

It was a particularly bad flare, not too long ago, when my mom turned to me quite randomly and asked, “do you remember what it feels like to not have back pain?” My response, “no.” As tears swelled in her eyes, she said to me “I’m so sorry Katie.” 

Time and time again, she was told that it was “mechanical,” or, “growing pains,” or, “dance-related injuries,” or, perhaps the most detrimental to her adolescent and teen health and well-being, and that it was “all in your head.”

While my parents and boyfriend witness the struggles I face on a daily basis and wish this disease away, I do not share the same opinion. Living with inflammatory arthritis has taught me how to harness my inner strength, it has shown me how to gracefully persevere, and it has always led me, and continues to lead me, to kindness even when I am in darkness.  

Hello fellow peers. My name is Katie and I am 26 years old. I first experienced chronic back pain at the age of 9. I was diagnosed with ankylosing spondylitis (AS) just two short years ago, at the age of 24. 

As a competitive dancer from the age of 4 to 18, I was taught to always push through the pain and to never let it show. I was taught that your body has no limits. I was taught that I had to prove time and time again that I deserved to be on stage. I was taught that weakness is not rewarded. I was taught to continue on even when you think you cannot.

I remember so vividly the first moments I realized that something was wrong. I was 9 years old. It was close to midnight on a school night, and I laid on my bedroom floor clutching my knees to my chest and crying in pain. My mom hugging me and wiping away the tears. 

It was in that moment of darkness that I made a promise to myself. A promise to not tell people about my back pain and to never allow it to take away a day of dance, school, and later a day of work.  A promise to continue continuing on. Similarly, in that moment, my mom vowed to me that we would search for answers. And, we searched, both long and aggressively. A battle that my mom, dad and I faced head-on for 15 painstaking years.  

Family doctors, sports specialists, chiropractors, physiotherapists, naturopaths and a continually growing list of health care professionals. No answer was in sight. Time and time again, I was told that it was “mechanical,” or, “growing pains,” or, “dance-related injuries,” or, perhaps the most detrimental to my adolescent and teen health and well-being, it was “all in your head.”

I have always accepted that I have back pain. Back pain is my reality. However, as the growing pressure from the health care field began to amount to feelings of insecurity and worthlessness, I too began to give up on the search. I accepted that this was my life. I accepted that once a month for, well, maybe forever, I would see a chiropractor to help manage the pain. I accepted that this was my secret. I accepted that this was my reality. I accepted to continue on without an answer. 

I continued to dance. I continued to go to school. I continued to work. I continued to volunteer. I continued playing soccer. I continued hanging out with friends. I continued.

It wasn’t until I retired from dancing and was in my final years of university, when my chiropractor said to me during a routine monthly visit, “Katie, I think it’s time you start to look for answers again. This is not mechanical. This is inflammatory.” 

He ignited the fire. 

Shortly thereafter I was referred to a rheumatologist. Following two years of tests, imaging, blood-work, symptom checking and story-telling, I finally heard the news I had been desperately waiting for. I finally had my answer.

My story is far from over. My journey is still unfolding. Things are continuing to progress.  

In the past two years, I have experienced far more symptoms than the back pain I had accepted now over 17 years ago. Costochondritis, sacroiliitis, plantar fasciitis, peripheral joint involvement, chronic fatigue, pain, and the list goes on. Similarly, the list of health care professionals and treatment regimens also continues to grow exponentially.  

My mom stayed true to her word and I stayed true to mine. We have an answer, and I still have not missed a day of work. I can count on one hand the number of people in my life to whom I have disclosed, something that I am very proud of. 

I have learned a lot on this journey. And while I am not a religious or overly spiritual person, I strongly believe that we are given challenges that equip us with the tools and strength we need to overcome them. 

It is empowering to look back at my years of struggle with pride, and think to myself, I have overcome these challenges, and I am strong enough to continue to overcome them. I will continue continuing on.

This story is a part of an ongoing feature on Young Adults, as part of our Arthritis Awareness Month. Read more stories here.