Psoriatic Arthritis Diary: The Yoga Lover Who Previously Used a Wheelchair

Psoriatic Arthritis Diary: The Yoga Lover Who Previously Used a Wheelchair

by Sue Jones
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Katie Roberts, 44, was diagnosed with psoriasis when she was 10 years old and psoriatic arthritis at 17. Both diseases are inflammatory disorders that usually occur together, according to the U.S. National Library of Medicine. Psoriasis symptoms include scaly, inflamed rashes, while psoriatic arthritis manifests in stiff, painful joints. When she was first diagnosed, certain medications that are now prescribed to treat psoriatic arthritis were not available, and her condition worsened over the years. When she was 20, Roberts lost mobility from the arthritis and started using a wheelchair. In 2002, Roberts started taking a biologic and is now able to do the things she loves, like yoga and stand-up paddleboarding. Now, she advocates for psoriatic arthritis awareness and serves as a chair of the Maryland Arthritis Foundation Advocacy committee.

We asked Roberts to document her life for one week to share what living and thriving with psoriatic arthritis can look like. Here is her diary.

Name: Katie Roberts

Occupation: Marketing

Age: 44

Location: Annapolis, Maryland

Health conditions: Psoriatic arthritis and psoriasis

Day 1 (Saturday)

7:00 a.m.

I woke up extremely fatigued today, and just about every joint affected by arthritis is swollen. My toes, knees, hips, back, and hands are all super swollen, and I can barely move them. On a pain scale of 1–5, today is a 5+! Thank goodness it’s the weekend, so I can take time for myself and recharge my batteries.

10:00 a.m.

I’m feeling a little better after taking a hot bath with Epsom salt, but I’m going to take some ibuprofen to help with my swelling and then take a good old-fashioned nap. Before napping, I will find a guided imagery meditation playlist on Spotify. I started trying guided imagery for pain management after my therapist suggested it. Today, I’m opting for a 10-minute track that walks me through checking in with the different parts of my body, and I imagine what it feels like to be pain-free.

2:00 p.m.

I’m on my way to a friend’s baby shower, which I feel comfortable going to since it’s outdoors where it’s easier for me to be safe. (I had COVID-19 earlier in the pandemic but I still get tested for COVID-19 and take precautions.) I’m going in with a game plan. I’m letting my friends know that today is a “pain day” and that I won’t be able to play with their kids as much as I usually do. I find that setting boundaries and communicating them with others gives me power over my pain and helps people understand my situation.

7:00 p.m.

That baby shower took a lot out of me! My hands are still pretty swollen, so I’m going to skip making dinner and pick up carry-out.

8:00 p.m.

The day’s events and my pain have zapped all the energy I have! I can feel that my body is pretty tense, so I’m going to do some stretching and then go to bed.

Day 2 (Sunday)

10:00 a.m.

After sleeping for 11 hours, I feel much better. On a pain scale of 1–5, today is a solid 4, so I’m going to hop into the bathtub for another Epsom salt bath and drink some herbal tea.

12:00 p.m.

Even though I’m still feeling a bit sore, I’m going to try to get out on the water to enjoy this glorious day! I have been stand-up paddleboarding (SUP) for five years. (I even participate in races and am a SUP instructor!) I love that it’s a low-impact sport that keeps me active, and I can choose how hard I make the workout.

3:00 p.m.

I had a great time paddleboarding for almost two hours. I have an acupuncture appointment in just a bit, so I’m going to grab a quick protein smoothie and get ready for my appointment.

5:00 p.m.

My physician recommended acupuncture after I had some health challenges, and I’ve kept it up. I get the procedure whenever I’m stressed, in a lot of pain, or after a cold, and find that I feel better in the days following my acupuncture appointment. I hope that’s the case this time.

Day 3 (Monday)

7:00 a.m.
Today is COVID-19 vaccination day! The medication I’m on makes me immunocompromised, so I am cautious about taking new medications and vaccines. Last week, I met with my primary care doctor and rheumatologist to discuss the vaccine options, my arthritis, and my immune system. After much discussion and some blood work, the team decided it would be safe for me to proceed with the COVID-19 vaccine.

10:00 a.m.

I just got back home from getting my first vaccination. I felt a little dizzy after getting the shot, so I sat in the recovery area a little bit longer to make sure I was okay to drive. I send a quick note to my supervisor to let her know I am back from my appointment and settle into my day.

12:30 p.m.

I opt for a yoga session during my lunch break. I have been practicing yoga off and on for about 14 years. I love that there are so many different styles of yoga to suit how I’m feeling on a particular day. Since I feel pretty good, I select a 45-minute vinyasa flow via an on-demand yoga subscription I have. There were a few poses that were a bit tough for me today, so I modified them.

7:00 p.m.

I’ve had a long day, but the weather is too beautiful not to enjoy it. I invite my household to go for a two-mile walk around the neighborhood. Everything is in bloom and it’s so pretty! I walk a little slower than usual but am okay with that.

Day 4 (Tuesday)

5:00 a.m.

On a pain scale from 1–5, I’m feeling about a 2. I think the balance of staying active and resting over the past few days has helped my body recover the way it needed to. My local gym offers virtual classes, so I signed up for an online 45-minute pilates class.

11:00 a.m.

Today, I have my biannual check-in with my rheumatologist. I’ve been with the same rheumatologist for almost 20 years, and today we review my pain management plan and symptoms journal. (I always like to keep a journal describing my pain to detect any patterns in my psoriatic arthritis flares.) My physician tells me to keep doing what I’m doing—all things are looking positive!

5:30 p.m.

Whew! It has been a very long, stressful day at work. After sitting at a computer all day (at my makeshift desk a.k.a. my dining room table/chair), I am ready for some self-care and decide to use my oil diffuser. Whenever I feel stressed, I add basil, grapefruit, cedar, lavender, and eucalyptus oils to my diffuser because I find the combination calming.

6:30 p.m.

One of my favorite perks while working from home during the pandemic is the ability to work out virtually with my personal trainer. He understands my arthritis and related pain and even begins our sessions by asking, “How are we feeling?” Then, he adopts the workout based on my response. Every so often, my trainer checks in to make sure I’m doing okay. He’s been one of my biggest champions over the years.

Day 5 (Wednesday)

5:00 a.m.

I begin most mornings by drinking two glasses of water and taking my vitamins. I might take a yoga class in the morning, or stretch for 15 minutes. If I’m particularly sore, I lie in bed for 10–15 minutes with a heating pad on my back. Today’s pain level is only about a 2, so I follow my typical routine but skip the heating pad.

1:00 p.m.

After a crazy morning at work, I need a break, so I slip on a pair of sneakers and take a lap around my neighborhood— it’s about two and a half miles roundtrip. I love using a smartwatch to help keep track of my total steps and distance walked every day. While I don’t rely on it 100%, I use the data to make micro changes throughout my day. I look at it when I’m feeling a bit fatigued and see how much sleep I got the night before. If I sleep less than I’d like, I know I need to take it easy and conserve energy throughout the day.

7:30 p.m.

I love Wednesdays because it’s sound meditation day! A friend of mine teaches yoga classes in my community, and on Wednesdays, she leads a virtual sound bath meditation. During class, the instructor plays an array of singing bowls, crystal bowls of different pitches, percussion instruments, tuning forks, chimes, and even sings with her own magical sounding voice.

Day 6 (Thursday)

6:00 a.m.

The medication I’m using to manage my psoriatic arthritis symptoms requires me to give myself an injection once a week. The medicine comes delivered in a cooler, which I have to store in my refrigerator. Every Thursday morning, like clockwork, I give myself the injection.

2:00 p.m.

Boy-oh-boy has it been a nutty day at work. I work in a fast-paced environment where things change rapidly, and I have to be ready to pivot at a moment’s notice. While I’m pretty good about keeping my stress in check, there are days, like today, where my stress level is through the roof. I take a 45-minute break to go for a short walk and do some stretches.

6:00 p.m.

It’s time for my massage appointment, and it is very MUCH needed to help with the stress I’m experiencing and the pains I’m feeling in my upper back, shoulders, low back, and calves. I walk out of the massage feeling like a million bucks.

8:30 p.m.

After getting home from my massage, I do a yoga pose called “legs up the wall.” It’s pretty simple: I lie on my back with my feet toward the ceiling and rest my outstretched legs against the wall. This move helps reduce some of the pain in my legs and feet.

Day 7 (Friday)

5:00 a.m.

Today’s pain level is about 1 out of 5, and I’m so ready for the weekend! I start off the morning with my regular ritual of yoga, water, vitamins, and breakfast.

10:00 a.m.

Living with psoriatic arthritis for the majority of my life, I feel so fortunate to now have access to quality health care through my employer’s insurance. That wasn’t always the case, and my earlier experiences inspired me to become a patient advocate volunteer with the Arthritis Foundation. As an advocate, I meet with legislators to discuss how their decisions may affect various health care-related initiatives. Today, I attend a virtual Capitol Hill briefing. I get to share my story with legislators and explain how a proposed bill would affect other patients like me if it were to pass. It’s incredible to realize that my story has the power to influence change for the better. I absolutely love being a patient advocate and using my voice for good.

7:30 p.m.

The day is beautiful, and the conditions looked safe enough for me to go out on the water with my standup paddleboard. I run into a few other friends on the water who just started their training for the season. I can’t wait until it’s safe for all of us to get together again; the paddleboard community is a big part of my social life. It’s so important to have a strong support network of family and friends you can call on when living with chronic pain. I am so grateful for all the wonderful, supportive people in my life.

 

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