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Effie is an American writer, author and arthritis advocate. She wrote, Keeping it real with Arthritis: stories from around the world.
How has rheumatoid arthritis impacted your daily routine and activities?
I’ve been living with rheumatoid arthritis for 19 years now. At 18, doctors diagnosed me with polyarticular juvenile idiopathic arthritis. For a few years prior to my diagnosis, I was experiencing a wide range of symptoms from fatigue, brain fog, night sweats, skin rashes, acne, eczema, joint pain and muscle aches. At the time, many of these symptoms were very mild and doctors didn’t really think anything was alarming to the point of being an autoimmune disorder. However, these symptoms impacted my daily routine and activities greatly. I couldn’t play high contact sports such as basketball, tennis, volleyball, softball anymore. My grades were affected greatly too, and I am lucky I was even able to manage graduating high school. Before graduating, I received my diagnosis and treatment plan. During college and in my 20s I felt pretty good and was excelling in school and many other areas of life such as fitness. However, I did have major flares and eventually the joint damage became severe. I have been through a lot and can write a whole novel on how RA has impacted my daily routines and activities. But the main thing I want to tell people is that the human body, mind and spirit has a tremendous gift of adaptability. If we allow ourselves to flow with the current rather than against it, we fare better on this journey called chronic illness. There are so many resources out there that have helped me cope and rise above the impact RA has had on my life. There were times when I felt like there was no hope or days that things would get better. But as the saying goes, “This too shall pass.” And it did.
Can you share some strategies or techniques you’ve found effective in managing pain during flare-ups?
Being honest with my rheumatologist is the number one strategy. When I am in a flare, sometimes my doctor can visibly see that I am if my joints are not looking up to par, for example inflamed. However, she always asks me how I think I’m doing. I don’t sugarcoat anything because I learned that only hurts me in the end. When I feel flare-ups, pain and fatigue come up, I tell my doctor right away. This helps to nip things in the bud. Prayer, meditation, daily exercise and eating well all have been effective techniques. Everyone is different so what may help me, may not help others. I have done a lot of trial and error to figure out what helps me during these bad days, but I am still investigating other avenues I have yet to try. I am lucky that I’ve always been interested in learning new things and this has aided me on my journey with RA. Also, the biggest thing is limiting stress and toxicity. Whether that be social media usage, people in your life you need to set boundaries with, or a work environment that is doing more harm than good. I know for me stress and emotional upset have been huge triggers with my disease manifestation, regardless of any genetic predisposition.
How do you address the emotional and psychological challenges that may arise from living with a chronic condition like rheumatoid arthritis?
I have a therapist I talk to once a week. It wasn’t until 2021 that I sought therapy. Before then, I did a lot of the leg work on my own from reading books or simply talking to others in the arthritis community going through what I was. Writing and other advocacy related work brought on a major catharsis too. But ironically, RA isn’t what led me to therapy. It was the end of a bad relationship turned situationship and being on the receiving end of a lot of emotional abuse. This was a blessing in disguise because it gave me the push I needed to finally understand many things that actually were connected to RA and self-worth, self-love and overall confidence.
Let’s talk about travel, be it around your local community or abroad.
How do you plan and prepare for vacations considering the challenges posed by rheumatoid arthritis? Are there specific aspects you need to consider before deciding on a destination?
This depends on where I’m going. Within the U.S. versus overseas, there are two different types of planning and preparation. Though the first thing I do is plan out my medication schedule. There have been instances when I’ve traveled with my medication and have taken it during the days I’m away with no issues. However, if I can avoid it, I take my medication injections before I leave or plan dates around the time I return home to take it. I also make sure to let my rheumatologist know and have any backup medications on hand in case of a flare like prednisone (which I don’t take anymore and use for emergencies). I have a ton of other pain management tools I bring with me such as Biofreeze, Green Roads CBD roll-on, ice and heat packs, bug spray (because flares can be caused by bug bites), massage rolling balls and good walking shoes and sandals. I also travel with people who understand RA and any limitations that may occur.
Travel often involves long periods of sitting or standing. How do you manage discomfort during transportation and throughout your vacation?
I wear good shoes, and easy to take off ones. I love Kizicks and other sandals that don’t take forever to take off and on while going through the airport. I make sure to stand, stretch and go for walks to the bathroom. I also make sure to wake up early and get ready before others to ensure I have enough time to stretch, get dressed and have my supplements with breakfast. It’s important to take care of myself when on vacation so I don’t get run down which can lead to a flare and a feeling of needing a vacation after a vacation.
Exploring new places can mean a lot of walking and physical activity. What strategies do you employ to balance the desire to explore with the limitations imposed by rheumatoid arthritis?
I make sure to walk and workout a lot before going on a trip. I know I will be doing a lot of walking. I also have a knee replacement, so this is something I need to be mindful of to begin with, and take measures to ensure I am strong. I have considered looking into a trek pole for vacations I want to go on where terrain may be a little rough.
Climate change might affect joint pain and inflammation. How do you adapt to varying weather conditions when you travel to minimize their impact on your symptoms?
This is a good question but a difficult one too. We can’t predict weather changes all the time, just like we can’t predict RA flares and pain always. I think the biggest thing is to not stress about it or think about how the weather will flare you up. Out of sight, out of mind is my motto with this one. I think if we can handle the unpredictability of RA, we can handle anything. The above answers help me when weather conditions aren’t always the best.
Vacations often include trying different foods and beverages. Are there dietary considerations or restrictions you need to keep in mind to manage your rheumatoid arthritis symptoms while enjoying local cuisine?
The main thing I avoid now is gluten. I also don’t eat dairy, even though it does not bother me much anymore. One of the first things I do when researching a place to visit or knowing I need to go somewhere, is investigate the places that are allergen friendly. There is so much awareness nowadays that I often find I am never without options.
How do you ensure you have access to necessary medications and treatments while on vacation, especially if you’re traveling internationally or to remote areas?
I bring the medications and supplements I need with me. My doctors write notes for the airport staff in case they have questions while checking my bags. Travel and health insurance when overseas is a must. I haven’t done this yet but will be planning on doing so from here on out as I’ve heard others in the chronic illness community have done this too and it’s helped.
Traveling might disrupt your usual routine. How do you manage your daily exercise, stretching, and medication regimen to maintain symptom control while away from home?
I make sure to keep a schedule in the morning before I start my day. On vacation, I like to pray and meditate in the morning. Stretching helps and I try my best to stay on top of my supplements that help me from getting sick when traveling. I pack my supplements and medications in easily accessible travel bins and separate them by days. Though lately I’ve just taken the bottles.
Can you offer any advice or insights for others living with rheumatoid arthritis on finding a supportive healthcare team and building a strong personal support network?
Finding a supportive healthcare team is one of the most important relationships you will ever have. I know it’s hard for many to find supportive health providers for many reasons whether that be insurance blocks, lack of insurance coverage, financial hardship, proximity to a provider, not having enough specialists in your area and so on. Even then you can find at least one doctor who will be willing to help by giving referrals or looking into things more with you and if not, you keep searching until you do. It can be an exhausting process, but it’s worth it. Make sure to look at all the green versus red flags when you’re looking for a supportive healthcare team and strong personal support network. Online support through social media has been a huge blessing for me as I’ve met many people through it whom I can call friends and have had many opportunities that are life changing. Though moderation is key here too and I found the dark side is that too much of one thing can affect your mental health a lot. Connecting with people in real time whether it’s friends or family and getting out there to experience life in the real world is key too. Join local support groups in your area, and if you don’t have one, create a group. Look into ways to engage with others in person just as much as you do online.
Follow Effie Koliopoulos:
Instagram: @risingabovera