By J.G Chayko
"If we take steps to protect ourselves from the elements, we can focus on enjoying the beauty of this ephemeral season instead of nursing a sunburn."
A rheumatoid arthritis patient advocate shares strategies for supporting loved ones during hospital stays.
By J.G Chayko
"The extra risk of contracting a novel virus on top of fighting a chronic condition was not appealing — but I could not fathom the idea of never gracing the stage again."
“Over the years, I’ve learned to pay attention to my body’s messages and avoid foods it doesn’t want...I learned to follow what is now known as intuitive eating, connecting to my body’s needs and wants, including not getting too full.”
“It’s important to remember that many people switch to biosimilars with no problems. But this was not my experience.”
Working from home? Try incorporating one of these tips to support your body and mind throughout the day.
By J.G Chayko
"Being an advocate is not for everyone. I am no wiser about my disease than you are about yours. It’s a learning curve that takes time, energy, and a bit of trial and error."
"When you lose a core member of your medical team, especially someone you liked, it’s normal to feel sad. Allowing someone to care for your body is a very personal thing and can lead to deep feelings of trust and connection."
By J.G Chayko
"It can certainly feel like a funeral of life as we know it after a life-changing diagnosis of rheumatoid arthritis...but what if we don’t grieve it as much as celebrate it?"
“My word this year is space. Giving myself the space to take care of my physical and mental health, space to think, space to spend time with family and friends, space to have fun, and space to be creative.”
By J.G Chayko
“Fatigue is the monster we never see coming. It arrives without warning, quietly flowing through the cracks before settling into our body.”
By J.G Chayko
“RA may change the choreography of my body, but it doesn’t change the thespian in my soul.”
“Il est possible de faire de l'exercice avec la polyarthrite rhumatoïde, mais souviens-toi que tu pourrais devoir adapter ta façon de faire de l'exercice à la manière dont ton corps fonctionne, pas à celle d'une personne en moyenne en bonne santé.'
"Exercise is possible with RA, but remember that you might need to adapt your perspective of how you exercise to the way your body works, not the average healthy person."
By Sshaw
À l'occasion du mois de l'arthrite au Canada, découvrez des conseils suggérés par les patients pour vous protéger au mieux face à la saison du rhume et de la grippe.
By Sarah Shaw
In honor of Canadian Arthritis Awareness Month, try one of our patient-recommended tips to navigate and stay resilient during this cold and flu season.
By J.G Chayko
“There’s something about the act of moving through water that clears the fog out of my brain...It’s my solace — a meditative dance in the water.”
By J.G Chayko
“Il y a quelque chose de spécial dans le fait de se mouvoirdans l'eau qui dissipe le brouillard de mon esprit... C'est mon réconfort — une danse méditative dans l'eau.”
By J.G Chayko
J. G. Chayko vous parle du défi 30 jours qui l’a aidée à reprendre sa routine d’exercices.
By J.G Chayko
Patient advocate J.G. Chayko shares her 30-day exercise challenge and how it helped restart her exercise routine.
“The key to nourishing joy every day and every week was realizing that I don’t need to get on a plane for adventure. Now I truly understand that everything can be an adventure, so long as you look for it.”
« La clé pour cultiver ma joie au jour le jour a été de me rendre compte que je n’avais pas besoin de prendre l’avion pour partir à l’aventure. Maintenant, je comprends vraiment que tout peut être une aventure, tant qu’on garde l’œil ouvert. »
By J.G Chayko
Découvrez comment J. G. Chayko, défenseure des droits des patients, navigue à travers une nouvelle transition dans la vie et évite les poussées grâce à des soins personnels, de l’exercice régulier, un bon sommeil, et plus encore.
By J.G Chayko
Discover how patient advocate J.G. Chayko is navigating a new transition in life and avoiding flare-ups by embracing self-care, regular exercise, proper sleep, and more.
Learn why chronic illness care and self-care are not the same. Discover how to balance both for physical and mental wellness.
Découvrez pourquoi prendre soin de sa maladie chronique et prendre soin de soi ne sont pas synonyme, et apprenez à équilibrer votre bien-être physique et mental.
Découvrez comment les biosimilaires créent plus d’options de traitement pour la PR à moindre coût au Canada et leur incidence sur les politiques d’accès aux traitements en rhumatologie.
Learn how biosimilars are creating more RA treatment options at a lower cost in Canada and how they may impact rheumatology treatment policies.
By J.G Chayko
« Être un patient en attente de réponses peut être décourageant, car on a l’impression de marcher à tâtons dans un labyrinthe sombre… Eh bien, faisons la lumière sur ce qui se passe en coulisses afin que vous puissiez trouver la meilleure façon de défendre vos intérêts. »
By J.G Chayko
“Being a patient waiting for answers can be discouraging because it feels like you’re walking around in a dark room — well, let’s shed some light on what is happening behind the scenes so you can navigate the best way to advocate for yourself.”
By J.G Chayko
« Quand je me regarde dans le miroir, je ne vois plus cette ballerine longue et mince. Je vois une femme forte vivant avec une maladie chronique et empreinte d’une nouvelle forme de grâce… un corps qui n’est pas tout à fait le même, mais qui portera toujours l’empreinte des moments exaltants qu’il a vécu sur scène. »
By J.G Chayko
“I don’t see that long thin ballerina in the mirror anymore. I see a strong woman living with chronic illness and a new kind of grace...a body not quite the same, but one that will always bear the imprint of an exhilarating life on the stage.”
Le personnel administratif de vos médecins joue un rôle essentiel au sein de votre équipe soignante, mais il est souvent négligé. Voici quelques conseils pour renforcer votre relation avec ces héros de l’ombre.
Medical office assistants (MOAs) are a critical yet often overlooked part of your care team. Get tips for building stronger relationships with these unsung heroes.
« Vous savez mieux que quiconque ce qui est normal pour vous. De nombreux symptômes bizarres peuvent être complètement normaux pour quelqu’un qui fait de la polyarthrite rhumatoïde, mais si l’état habituel de votre maladie chronique change, n’hésitez pas à exiger des réponses. »
“You are the best judge of what is normal for you. A lot of unusual symptoms may be a normal part of rheumatoid arthritis, but if there’s a change from your usual state of chronic illness health, push for answers.”
By J.G Chayko
« La polyarthrite rhumatoïde est un travail à temps plein et les temps d’arrêt sont importants pour donner à notre corps une chance de se reposer et de guérir un peu. »
By J.G Chayko
"RA is a full-time job — and downtime is important to give our bodies a chance to rest and heal a little bit.”
By J.G Chayko
« Je connais mes amies depuis longtemps, mais nous n’habitons pas ensemble. Elles ne voient pas les matins difficiles ou les jours où une poussée d’arthrite fait son apparition – elles ne me voient pas lutter contre la douleur ou la fatigue. C’est un autre type d’intimité. »
By J.G Chayko
“I’ve known my friends for a long time, but we don’t live together. They don’t see the rough mornings or my bad flare days — they don’t see me in pain or struggling with fatigue. It’s a different kind of intimacy.”
La militante pour les droits des patients, Lene Andersen, examine certains des obstacles à l’obtention des médicaments dont les patients ont besoin et propose des conseils pour les surmonter.
Patient advocate Lene Andersen looks at some of the obstacles to getting the medications you need and offers tips to break down the barriers.
By J.G Chayko
« Paraître à mon meilleur quand je suis à mon plus mal me donne du pouvoir sur ce que je peux contrôler. Ça me permet de surmonter ma maladie et de briller à ma manière. »
By J.G Chayko
“Looking my best when I’m feeling my worst gives me power over what I can control. It allows me to rise above my disease and shine in my own way.”
« Si nous voulons que la polyarthrite rhumatoïde soit plus visible et mieux prise en compte dans les décisions concernant les politiques et le financement de la recherche au Canada, nous devons nous exprimer sur notre situation en tant que Canadiens. »
“If we want rheumatoid arthritis to be more visible in this country, more considered in decisions regarding research funding and policy changes, we need to speak up as Canadians about our situation in Canada.”
By Sarah Shaw
Des membres du Canadian Arthritis Patient Council de la Global Healthy Living Foundation s’expriment sur ce que c’est que de vivre avec l’arthrite et sur ce qu’ils aimeraient faire connaître de cette maladie chronique.
By Sarah Shaw
Members of the Global Healthy Living Foundation’s Canadian Arthritis Patient Council weigh in on what it’s like to live with arthritis and what they wish others knew about this chronic illness.
By J.G Chayko
J. G. Chayko rentre chez elle en toute sécurité, mais confrontée au décalage horaire et au temps plus froid. Elle a aussi rapporté avec elle une énergie renouvelée pour maintenir un équilibre travail/vie personnelle sain.
By J.G Chayko
J.G. Chayko makes it home safely and is now faced with jet lag, colder weather, and a renewed energy to keep a healthy work/life balance.
« Pour faire face à la douleur causée par la polyarthrite rhumatoïde, il faut une boîte à outils pleine de trucs et de remèdes différents. En plus des outils habituels, comme les médicaments, les sacs magiques, les blocs réfrigérants et les étirements doux, la mienne comprend également sacrer comme un charretier. Ça pourrait fonctionner pour vous aussi. »
“Coping with RA pain takes a toolbox of many different remedies and trips. In addition to the standards, such as medication, heating pads, ice packs, and careful stretching, mine also includes swearing like a sailor. It might work for you, too.”
By J.G Chayko
J.G. Chayko isn’t leaving her rheumatoid arthritis management behind during this trip. Here, she talks about the importance of sun protection, hydration, yoga, pacing, medication management, and more.
"The focus needs to change from deciding patients catastrophize to taking responsibility for helping them develop effective coping tools.”
By J.G Chayko
J.G. Chayko took a big leap and decided to travel abroad during the pandemic. Here are the pre-travel and travel precautions she and her husband took to stay safe.
By J.G Chayko
“When I say break the rules, I simply mean to indulge in a little bit of decadent sin to detach myself from a life with chronic illness and remember what it felt like to be unbreakable for a few stolen moments.”
By J.G Chayko
Learn how RA patient advocate J.G. Chayko is learning to move forward during the pandemic and face the world after a long hibernation.
Patient advocate Lene Andersen talks about how celebrating your body, asking for help, and embracing your intrinsic worth can help get you started.
Plus, four ways to start learning how to unlearn the urge and find acceptance in your own rheumatoid arthritis reality.
Patient advocate Lene Andersen talks about why and how to make issues like mask mandates, pharmacare programs, and affordable accessible housing front and center during this year’s Ontario and Québec polls.
For patient advocate Eileen Davidson, a shortage of family physicians in BC is adding to the mental and physical toll of living with chronic illnesses.
By J.G Chayko
"I lost myself in my art — it took me out of myself, gave me a break from reality, and provided a new perspective on my life. It gave me a reason to celebrate, and celebrating the small victories is so important, especially in a life with chronic illness." — J.G. Chayko
By J.G Chayko
“Many people in the chronic illness community are worried about the world reopening,” says RA patient and health care worker J.G. Chayko. “But I’m not as worried because I never got to hide from it in the first place.”
Whether or not your chronic illness is obvious to others can affect how you’re treated — and sometimes, how you feel about yourself.
By J.G Chayko
After J.G. Chayko was diagnosed with RA, she doubted whether she’d be able to live the life she wanted. Then she realized she had to redefine what it meant to seek joy in everyday experiences.
There aren’t enough rheumatologists in Canada to provide timely care. Rheumatoid arthritis advocate Lene Andersen spoke with rheumatologist Tooba Ali, MD, on how patients and doctors can work together for a better future.
By J.G Chayko
Medication fatigue was a symbol: It wasn’t really the medication that J.G. Chayko was tired of — it was living with rheumatoid arthritis, a lifelong chronic disease.
"Fatigue is a heavy, lead-lined cape that weighs down every movement so I need more energy for even simple tasks,” says Lene Andersen, rheumatoid arthritis patient advocate. Here’s how she’s learned to live with it.
By J.G Chayko
For actress and dancer J.G. Chayko, working has never exactly been conventional. But she realized after her rheumatoid arthritis diagnosis that she would ultimately need to work part-time to get the health and balance she craved.
By J.G Chayko
Adjusting to menopause after decades of a predictable monthly cycle was not easy for J.G. Chayko, but it turns out that managing a chronic illness like rheumatoid arthritis makes adjusting to menopause easier.
Lene Andersen learned early on that although she couldn’t control what happened to her over the course of her journey with chronic illness, she could control her reaction to it. “Back then, and now, I choose laughter,” she says.
By J.G Chayko
There’s more than one way to raise awareness of invisible illnesses like arthritis, says rheumatoid arthritis patient J.G. Chayko. And it starts with acknowledging the struggles and the triumphs.
Although recreating festive traditions in exactly the way we used to may feel like a way to reclaim our lives, it just perpetuates old and dysfunctional habits. Instead, follow these tips for easier and happier holidays, says advocate Lene Andersen.
In a moment of profound insight, Lene Andersen realized that her body was not an enemy to resent, but a friend worth getting to know and supporting.
“The term patient reduces me to one a small slice of a much greater whole,” says Lene Andersen, a person with rheumatoid arthritis. “We are all so much more than just one thing and who we are is always and forever greater than the sum of our parts.”
By J.G Chayko
"I miss the lights, the costumes, and the challenge of bringing the world of the playwright to life, but I’m not sure I’m ready to take the stage just yet," says Julia Chayko, a rheumatoid arthritis patient.
When rheumatoid arthritis patient and fashion designer Michael Kuluva approached Eileen Davidson to help design a T-shirt to promote arthritis awareness, she embraced her own ‘fierce fight’ to help inspire and support others.
From co-designing a shirt with a fellow rheumatoid arthritis patient to having people with chronic illness as models, designer Michael Kuluva continues to ensure his New York Fashion Week show is inclusive and raises awareness.
By J.G Chayko
“Let’s allow that sense of play to fuel our well-being and ignite our imagination,” says Julia Chayko, a rheumatoid arthritis patient.
September is Arthritis Awareness Month in Canada. Here’s what rheumatoid arthritis patient Eileen Davidson has learned about using her voice to
“These new guidelines show me that, even on the bad days, I am still doing something to improve my health, easing some of the burden and guilt I feel when I skip a workout because of my illness,” says Eileen Davison, a patient advocate with rheumatoid arthritis.
You may feel helpless as you wait to meet with a specialist about your rheumatic disease, but there are steps you can take during the waiting period to prepare for your first visit with the rheumatologist.
By J.G Chayko
“Shifts in the weather can happen at any time, pitching the ocean into a frenzy and churning the waves of inflammation in my body,” says Julia Chayko, a rheumatoid arthritis patient.
In Canada, the average wait time to access specialty care — like rheumatology —is 78 days. During this time, your rheumatoid arthritis may be progressing at its own speed and stopping you from living your life. Here’s what to do during the wait time to manage your pain.
By J.G Chayko
“I learned that managing my disease was not just about medications and therapies, but about balance.”
“There’s something about crisis situations that allows you to shed what’s not important and prioritize what you love.”
By Rachel Ellis
“There’s mutual relief that comes through sharing and hearing that someone else understands exactly what you are going through.”
"I realized I had to get some answers in order to make the best choice in regard to my COVID-19 protection."
By J.G Chayko
“Although yoga started as a way for me to slowly learn how to move in my new body, it quickly became more than a physical exercise.”
Getting involved in arthritis research taught patient advocate Eileen Davidson a lot more about how to live with rheumatoid arthritis than she would have learned on her own.
U.S.-born Michael Kuluva started to shine a spotlight on what it’s like to live with rheumatoid arthritis after he was diagnosed at age 28. Now he is continuing this important patient advocacy work as a resident of Ontario.
No, I can’t tell you when the weather is about to change by a feeling in my joints but I can sure tell you how the weather when frightful changes the way my joints feel.
‘People believe that they “understand chronic pain” because they have also felt pain but it's a completely different thing when it's day in and day out for years.’
The role your grip strength plays in your health goes far beyond your ability to open a pickle jar.
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