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10 Things That Are in My RA Survival Kit

rheumatoid arthritis

When you live with rheumatoid arthritis (RA), you quickly learn how to adapt. You strive to live a life that is as productive, comfortable, and pain-free as possible. Sometimes, you do what you can to simply function — to just feel (almost) “normal.”

But it’s not always easy. In fact, often, it’s not. So, after two decades of living with RA, here are the 10 things that help me live as “normal” a life as possible, day in and day out.

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1. A strong support system

Maybe your support system is made up of family, friends, or neighbors. Maybe it’s your co-workers or fellow students. Perhaps it’s an online community or support group. Maybe it’s a combination of all of these things! Whether in real life or on social media, a good support system of friends, healthcare providers, and caregivers can help remind you that you are never alone.

2. A team of trustworthy doctors and medical professionals

doctors

Find a rheumatologist and team of specialists who listen to you, respect you, and make you feel empowered and comfortable. Communication is key, so make sure that you and your doctor understand one another. Finding a good physical therapist, massage therapist or acupuncturist, and psychotherapist may help, too.

3. Gratitude

Finding things to be grateful for can help keep you from dwelling too much on the pain or what your illness has taken from you.
Ashley Boynes-Shuck

A healthy dose of gratitude can be a great way to ground yourself and gain some perspective while coping with an illness like RA. The disease can be debilitating and isolating. Finding things to be grateful for can help keep you from dwelling too much on the pain or what your illness has taken from you. Look for the good.

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4. Mindfulness and balance

I believe that when it comes to thinking about (and talking about) your medical condition, mindfulness and balance should go hand in hand. Be mindful about what you want to get out of the conversation to help you with RA, and learn how to balance the ways you think and speak about it. This can be of vital importance for your emotional well-being.

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5. Exercise

Keep moving! As hard as it may be, physical activity is crucial for our health and wellness — mind, body, and spirit! So take a walk, try yoga or tai chi, go for a bike ride, try water aerobics, or simply stretch. Any amount of movement is great for managing RA symptoms — just consult with your doctor and don’t overdo it when you are flaring.

6. Heating pads

heat pad

Maybe it’s ice packs for you, but me, I love heating pads! I have an electric moist-heat heating pad, an electric blanket, and several microwaveable heating pads. I even have an LED light pad for pain relief. Apart from when I ice my joints or muscles if I have an acute injury, or if there’s a ton of swelling, heating pads are my best friends!

7. Grit and fortitude

You have to be strong of heart and mind to get through this condition which can sometimes leave you feeling physically weak or beaten down.
Ashley Boynes-Shuck

A certain amount of mental strength and stamina are essential for navigating life with RA or any other chronic illness. I like to call it grit, or fortitude. Others may call it resilience. Whatever you want to call it, do it. And live by it. You have to be strong of heart and mind to get through this condition which can sometimes leave you feeling physically weak or beaten down.

8. An identity outside that of a patient

mat

You are not only an RA patient. It is a part of who you are, but not all of who you are. Make sure you aren’t identifying solely as a patient. I’m a wife, daughter, sister, friend, pet mom, author, blogger, advocate for animals, and a patient leader and influencer. I just happen to also have RA and some other medical conditions, too.

9. Hobbies and interests

It’s okay to be vulnerable. Illnesses like RA almost require it.
Ashley Boynes-Shuck

Hobbies and interests that you still can do are important. Don’t just focus on the things you cannot do anymore because of RA. Yes, rheumatoid arthritis can make a lot of activities more difficult. But there’s a lot you still can do! I like to read, write, and travel. I am an amateur astronomer and I dabble in hobby photography. I like spending time with my five pets, I love fashion and pop culture, going to wine festivals, and I enjoy boating and trying to play the ukulele.

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It is not always easy to take my RA out of the equation — and it still gets in the way of some of these things — but I try not to mourn or grieve the hobbies I had to give up or can’t do anymore because of RA. I just replaced them with new ones!

10. Humility

Being sick can be humiliating, but you have to live your life with a certain amount of grace and humility. Ask for help — and accept help — when you need to. Know that it’s okay to cry or to rest, to take time for yourself, and to practice self-care. It’s okay to be vulnerable. Illnesses like RA almost require it.

There are other things I could recommend: comfortable and adaptive clothing, faith, a positive mindset, comfy pillows and blankets, orthopedic shoes, germ masks, music, a cause to volunteer for … and the list goes on. But I think the 10 things I’ve listed cover the bases, at least for me!

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But no two RA patients’ journeys are the same. What would you add or delete from my must-have list? What can’t you live without when it comes to living and thriving with RA?


Ashley Boynes-Shuck is a blogger and patient advocate living with rheumatoid arthritis. Connect with her on Facebook and Twitter.

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