patient story

Maggie is a 34-year old cancer survivor who, frankly, isn’t thankful she ever was diagnosed. Maggie’s cancer compromised her fertility, brought upon anger, and played awful waiting games with biopsy results. Tune in to this week’s episode to hear about a rare cancer diagnosis, family planning, second opinions from doctors, and the role of therapy. 

Song Credits: 

Easy on Me, by Adele

Clair de Lune, by Claude Debussy 

 Dr. Saimun Singla shares her journey first becoming a pediatric rheumatologist (a Pediatrician who further specializes in rheumatology), then becoming diagnosed with adult rheumatoid arthritis after the birth of her second child.  

Dr. Singla’s experiences as a patient changed her approach to her patients, and led her to pursue a fellowship in integrative medicine. She shares what’s in her personal RA management toolbox, from sleep and meditation to medication and exercise. She also reflects on how her experiences ultimately led her to open up her own private practice in Houston, TX.

Episode at a glance:

• How Dr Singla became a pediatric rheumatologist
• Diagnosis: Dr Singla gets diagnosed with adult rheumatoid arthritis after the birth of her second child
• Pregnancy: What it was like to be pregnant before rheumatoid arthritis and after her RA diagnosis
• Integrative Medicine: How Dr Singla’s personal journey with RA led her to pursue Integrative medicine
• What’s in Dr. Singla’s personal RA management toolbox: lifestyle factors like nutrition, sleep ,exercise, medication and other mind-body approaches in addition to medications
• Being both patient and doctor: Dr Singla describes how humbling it’s been to be a patient and how that’s led her to be a more empathetic doctor
• Pivoting career due to RA: how she started her own integrative pediatric rheumatology practice, Rheum to Grow, in Houston, TX which allows her to control her schedule and accommodates her RA needs
• Culture and the patient experience: Dr Singla reflects on how her South Asian identity and culture affects her patient experience
• Dr Singla’s words of wisdom for the newly diagnosed

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.

Episode Sponsors

Rheum to THRIVE, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in September 2022!

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis.

##Full Episode Details & Transcript:
Go to the episode page at www.MyArthritisLife.Net for all links and details!

Joined with the head of the SLP department, Bob Serianni, a pediatric client shares his experience working with a student at SLI.

To learn more about our podcast series, visit salus.edu/podcasts

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:

• Julie’s sites:
  • Blog: Itsjustabadday.com 
  • Twitter: twitter.com/justagoodlife 
  • Facebook: Facebook.com/itsjustabaddaynotlife
  •  Instagram: Instagram.com/itsjustabaddaynotlife 
  • LinkedIn: www.linkedin.com/in/juliecerrone  
  • Blog Email: justabaddaynotlife@gmail.com 
  • Work email: Julie.croner@wegohealth.com  
• Organizations mentioned in this interview:
  • WEGO Health
  • MothertoBaby - research studies of medications and pregnancy / breastfeeding
  • Mindful Mamas App
• Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook group
• Cheryl’s Arthritis Life freebies:
  • Free Handout: Cheryl’s Master Checklist for Managing RA
  • Free Training: Arthritis Life Hack Crash Course
• Arthritis Life Program Links
  • Join the waitlist for Rheum to THRIVE, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. 
  • 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.
• Cheryl’s Arthritis Life social media pages:
  • Cheryl &  Arthritis Life on Instagram
  • Cheryl’s website: Arthritis Life
  • Arthritis Life Tiktok: @ArthritisLife 
  • Arthritis Life Facebook Page
  • Cheryl’s Twitter: @realcc 
  • Arthritis Life Youtube channel

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.

(4:12) 10,000 foot view of Cynthia’s story with Minimal Change Disease…

(5:11) An American nomad…

(7:40) A complicated medical history…

(11:01) Strong parents and a strong support system…

(14:11) “I don't ever remember a specific time of coming to that realization. It was woven into daily life. I never remember a time of not having Nephrotic Syndrome.”

(16:14) Various treatments during elementary years…

(20:34) The changes with Cellcept…

(24:25) Weaning off of Cellcept and hoping the disease would be just a pediatric condition…

(27:21) Pivoting her life and finding horses…

(30:42) “I was at the barn all the time. I went there every day after school. I was there all weekend. It really became the place that I just invested myself in, and could absorb, and be someone, at that barn.”

(35:21) Making healthy lifestyle choices that are Nephrotic Syndrome safe…

(37:54) “I think it's really important that as people have these conversations that we don't forget the siblings.”

(41:20) Separating Nephrotic Syndrome from identity…

(44:52) The ups and downs of Prednisone, and getting into remission…

(47:45) “At a very young age, when I started hearing doctors potentially tell me how this could limit my life I was just so determined that they were wrong.”

(50:12) Hard moments and the tool of therapy…

(54:39) What do you think contributed to your remission?

(56:47) A life experience that has strengthened and ignited…

(1:03:25) Advice from Cynthia…

In January 2000, Krista was diagnosed with Rheumatoid Arthritis; a debilitating autoimmune disease affecting her joints, tissues, skin and organs.  Having experienced chronic pain, disability, stress, depression, isolation and hopelessness for years, she relates deeply to the fear and impact to all facets of life when health is deteriorated.

In 2015, Krista began addressing root cause drivers of her inflammation and disease, which not only dramatically improved her quality of life, but led her to become a speaker and certified coach. Today, Krista is on a reMISSION to inspire and empower others to improve their own health and quality of life.

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. 

Links to things discussed in the podcast episode:

• Krista’s Instagram: @kickra18 
• Tiktok: @kickra18 
• Krista's Website: alivetoliving.com
• Cheryl’s Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic Support
• Cheryl’s Free Handout: Cheryl’s Master Checklist for Managing RA
• This episode is brought to you by the Rheumatoid Arthritis Roadmap, an online education and support program Cheryl created to guide people with RA step by step through how to confidently manage their social, emotional and physical life with rheumatoid arthritis.

Episode Breakdown:

• 01:00 - Krista’s introduction and diagnosis story at age 29
• 05:15 - Krista’s initial fears about what  life with RA would be like
• 7:00 - How Krista’s diagnosis affected her relationship with her fiance, wedding planning, family planning and all aspects of life
• 9:20 - Living in “fear, shame, anger and doom” for the first fifteen years of her journey, without revealing her diagnosis at work or publicly
• 10:52 - Isolating herself from fear of being perceived as weak 
• 13:45 - Krista’s experience on prednisone, feeling “not broken”
• 14:50 – Pregnancy challenges due to RA flare
• 17:19 - Krista’s wedding - home made Keds
• 19:14 - Krista hits “rock bottom” after 15 years and leaves her 20 year corporate career and decides not to apply for disability.
•  21:05 - Krista encounters Teri Wahl’s diet and lifestyle journey with MS and the “Wahl’s Protocol”
• 22:10 – Krista learns about “root cause medicine,” finds hope and goes back to school to become a “holistic nutritionist.” 
• 26:25 - Krista learns to pay attention to her inflammation triggers (stress, foods, fragrances, sleep)
• 29:33 - Krist and Cheryl reflect on the importance of hope and mindset
• 31:23 - The importance of avoiding the “positive thinking” trap and how it’s good to validate your feelings. 
• 32:35 - Learning to  mentally reframe what was actually happening in her life and address perceptions to stop her stress response.
• 35:20 - How Cheryl & Krista both learned to curb the urge to be people-pleasers.
• 36:00 – Krista and Cheryl discuss learning to set boundaries, say no & protect energy.  
• 40:27– Krista joins TikTok in June 2020, makes “I can’t shuffle but I can Shakira” viral video showing belly dance style moves
• 44:02 - Krista is surprised by the positive responses to her dance videos
• 47:50 - Inspiring people to move however you can, “love yourself moving” 
• 51:20 - Krista starts showing some of her physical limitations in her videos, and realizes that she doesn’t have to hide her RA anymore. 
• 56:00 - Krista reflects on going from very private to public about her diagnosis
• 58:20 - How Krista responds to unsolicited advice from people who don’t have a chronic illness
• 1:00:10 – Krista’s words of wisdom for newly diagnosed patients.
• 1:03:07 - Krista’s final thoughts: being 50 and being in the best place she’s been in 21 years, learning how to live in the moment even if it’s uncomfortable.

Medical disclaimer: All content found on the 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.