Specific topics include:
- Julie’s experience with multiple knee surgeries
- Avascular Necrosis leads to Complex Regional Pain Syndrome and Julie is bedriddenfor 6 months
- How a trip to Disney World led to Julie’s epiphany that she should share her story and start a blog
- How Julie put her Information Technology (IT) degree to use while tracking her symptoms and discovering her unique inflammation triggers
- How Julie discovered the most important tools for living a healthy, full life with PSA
- Julie’s current role as a patient advocate with WEGO health
- How PSA affected Julie’s dating life and how she met her now husband
- Julie’s experiences with pregnancy and parenting with PSA
This episode is brought to you by the Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.
Speaker Bios:
Julie Croner, a psoriatic arthritis patient leader, is on a mission to advocate for ALL advocates. She's the Vice President of the Patient Leader Network at WEGO Health and was named to MM&M's inaugural class of 40 Under 40 in 2020. Julie has been featured by Stanford Medicine X, the National Psoriasis Foundation, Everyday Health, WebMD, HealthLine, and more.
Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
Episode links:
Medical disclaimer: All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.
Here's the show breakdown:
1:00 - Introduction to Julie.
2:00 - Julie’s winding journey to a psoriatic arthritis diagnosis: knee surgeries / swelling from fifth grade until after college and during work as an Information Technology (IT) consultant.
4:55 - Julie gets the adult diagnosis of psoriatic arthritis (PSA) and her rheumatologist helps get it under control. She’s able to connect the dots of her chronic health issues in retrospect and see how it all relates to psoriatic arthritis (PSA).
8:24 - Julie also experiences avascular necrosis in the femur bone (leg) which led to complex regional pain syndrome (CRPS). She started connecting to other patients online, got medication for PSA and started exploring diet and lifestyle.
9:48: Julie researches anti-inflammation lifestyle approaches, and uses her IT consultant skills to make an excel spreadsheet to track everything (food, movement, mood, medications, etc) for 6 months and discovered her unique inflammation and flare triggers.
10:55 The BEST thing she did in her journey!
11:20 - Julie discovers that her body is sensitive to food triggers. She discovers that gentle movement, meditation and mindfulness helps her. She continues going on and off medications when needed.
12:40 - Cheryl reflects on the importance of discovering your own unique triggers and not thinking there is a one size all solution.
14:00 - Julie’s worst food triggers for joint inflammation. (15:12)
15:44 - Julie is bedridden for 6 months due to her Avasular Necrosis and is depressed. Her parents take her to DisneyWorld and she has an epiphany after doing a singing competition! She decides to share her story through starting a blog: “It’s just a bad day not a bad life.”
19:20 - After being on disability for four years, she decides to focus on a career in patient advocacy rather than IT consulting.
20:30 - Julie starts working for WEGO Health, a network of patient leaders. She helps patients and loved ones use their story and get connected to companies wanting their insights.
23:40 - Why Julie thinks it’s so important for patients to share our stories: how she found an answer to her avascular necrosis due to seeing another patient’s story online.
26:50 - How Julie’s health conditions affected her dating life, and how she met her husband. Her husband said, “You talk like you USED to be great, and the person I see IS really great! (28:13)”
30:00 - How did PSA affect her family planning with her spouse who is in the army. When pregnant she felt very nervous and overwhelmed. She signed up for a MothertoBaby study.
33:45 - During her first pregnancy PSA went into remission, psoriasis in 1st trimester. Second pregnancy didn’t go into remission.
35:15 - What helped her when babies were little: asking for help, planning ahead, pacing yourself.
37:15: How Julie copes with big emotions while parenting: Headspace app and Mindful Mamas app.
39:36 - Julie’s best advice for newly diagnosed patients - empower yourself and be a partner with your medical team.
40:45 - Cheryl and Julie’s advice to patients who are overwhelmed when “doing their own research” - how to evaluate which resources are high quality information and which are low quality or dangerous. Reflections on how to navigate disease-specific Facebook groups.
44:15: Julie’s concluding thoughts: if you are dealing with an autoimmune disease, you are not alone.
