Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!
Location: Kirkland, WA
Diagnoses: Rheumatoid Arthritis and Gastroparesis
Age at Diagnoses: 20
How are you currently treating your conditions?
For rheumatoid arthritis, I take a biologic medication along with a DMARD (disease-modifying antirheumatic agent), which is supposed to help improve the effectiveness of the biologic. I also focus on protecting my joints during my daily activities by modifying my approach to them, as well as wearing splints as needed. For gastroparesis, I see a GI doctor along with a naturopath and acupuncturist to help my motility; at times I’ve been able to control it with simple dietary changes, but at other times I’ve needed medication. To manage both these chronic illnesses, I’ve found it crucial to see a therapist as well, to cope with the stressors that go along with these diseases.
What are the biggest challenges you have faced since your diagnosis?
The biggest challenge for me has been the fact that these diseases don’t have a clear trajectory; I like to be able to plan my life in advance, which is impossible health-wise since I don’t know when either of my diseases is going to flare up. The second biggest challenge has been balancing my role as a mom with my disease management, particularly when it comes to sleep and rest. As my son has gotten older, this aspect has gotten a bit easier, however!
What are your favorite tips and tricks for managing everyday tasks?
I focus on either changing up the items I use, changing my approach to the task, or finding workarounds. For example, instead of opening jars by hand, I use an electronic jar opener. If I don’t have the opener available, however, I can change my approach to the task so that I minimize strain on my joints - I do this by using my bigger muscles and “whole arm movements” rather than using just the small joints in my hands (which are more affected by my RA). Workarounds are crucial for me, as they allow me to avoid tasks altogether; these include asking for help, grocery delivery, and a housekeeping service. Overall, I find that building in time for self-care and taking rest breaks is also important, regardless of which other approaches I’m using.
How do you manage to keep facing forward every day?
I recently took a mindfulness course, which I found very helpful because it taught me how to focus on the present moment rather than getting consumed about future worries and anxieties. It also helped me cultivate a sense of gratitude for what I have, regardless of the limitations imposed by my diseases. I started a gratitude journal. I also find that my weekly sessions with my therapist are essential for helping me face forward, along with quality time with my family.
If you could go back to diagnosis day and tell your past self one thing, what would it be?
When I got diagnosed with rheumatoid arthritis, I was actually relieved as I had previous felt that something was definitely “wrong” in my body, yet was told by many healthcare providers that I was “just anxious.” That said, I would tell myself to not take for granted the times that I feel good. I didn’t understand that the disease would likely have lots of ups and downs over time; I thought that I would simply take medication for the rest of my life and feel better. I was overly optimistic when I got diagnosed, and so if I could go back in time, I’d urge myself to be a little more cautious in my optimism.
Do you have a blog you would like to share?
My blog is The Enthusiastic Life, where I share tips for daily living with rheumatoid arthritis, as well as tips for pediatric occupational therapy (my job field) and a few other fun topics.
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