My Several Worlds - Chronic Pain and Disability Awareness

05/06/2026

I wrote this article when I hit six months on immunosuppressant number nine in three years. The act of writing and journaling not only helps others, but it helps me process the magnitude of what I've gone through with extremely severe and disabling inflammatory arthritis. My arthritis is classified as mostly med resistant and D2T. (Difficult to treat)

I've bounced from med to med for years hoping to find something that helps.

Read more about my experience here
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https://www.myseveralworlds.com/2025/03/07/six-months-on-immunosuppressant-number-nine/

05/05/2026

Thanks for being a top engager and making it on to my weekly engagement list! 🎉 Joanna Doak, Elaine Baskerville, Dennis Labban, Tom Weeks, Sandi Marshall

I've been remiss in sharing art for these top fans. This is a 3D collage series of bell jars and I'm posting it for month.

05/05/2026

My reality with D2T (difficult to treat) and mostly med resistant inflammatory arthritis is nine biologics between 2021 and 2025.

That is an absurd number to go through in such a short time, but that is how insidious my arthritis is.

My rheum in Taiwan was doing biologic swapping to stay ahead of my diseases. Meanwhile in Canada I am still waiting for specialist care and hoping with all my heart that I can keep a firm hold on my health and arthritis until I get there. I suspect that Canadian rheums will not be familiar with his swapping technique.

05/05/2026

The hardest part about maintaining an income when you are chronically ill is obviously your health and the stress of coming up with money to pay for illness.

I never know how I’m going to feel from hour to hour, so I keep my hours flexible and work when I can. Obtaining disability services, as I’ve mentioned many times on my site, is not an option for me in Taiwan.

For the past decade, I’ve maintained diverse sources of income so I always have money coming in. Diversifying work is key. This article explains how I do it and what it does to my health.

One thing that has never changed is that I am constantly ‘catching up’ on days I’ve missed. The downside to working from home is that you never leave work."
🔗 https://www.myseveralworlds.com/2020/08/20/the-cost-of-chronic-illness-and-maintaining-an-income-when-you-are-chronically-ill/

05/05/2026

17 years surviving chronic illness, trauma, and impossible odds. I navigated heartbreak, exhaustion, and life-threatening health challenges — and finally made the hardest choice of all: putting myself first. Here’s my full journey:
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https://www.myseveralworlds.com/2026/02/15/17-years-with-axspa-and-choosing-a-different-kind-of-love/

05/04/2026

Did you know that the factors listed below can all work together for identifying axSpA? Make sure you bring these points up with your P*P if you have persistent back pain.

SCREEND'EM
Identify Spondyloarthropathy (SpA)

✔️ Skin
✔️ Colitis or Chrohn's
✔️ Relatives (Family history)
✔️ Eyes
✔️ Early Morning Stiffness
✔️ Nails
✔️ Dactylitis
✔️ Enthesitis

Image Credit: Paul Kirwan
Movement & Medication Effect
PHYSIO NETWORK

Must-Know Rheumatology for Physios

05/04/2026

has its very own star thanks to Kristal Kent at The Fibromyalgia Pain Chronicles and Veteran Voices For Fibromyalgia!

🌠🌠🌠

05/04/2026

This is the landing page I provide to new rheums and specialists who don't understand what they are dealing with. My medical records speak truth but so do my photos and words.

Visual Evidence of Inflammatory Arthritis - When "invisible disease" becomes visible.

What Axial Spondyloarthritis & Psoriatic Arthritis looks like and why it matters that we document it.

Get ready for some gross photos! In my opinion, there aren’t enough photos of this kind of thing online. And if I ever need an immediate article to show a doctor, I can now pull this article up and show them. Read it and learn why it's important to document your health journey with visual evidence.
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https://www.myseveralworlds.com/2024/02/12/visual-evidence-of-inflammatory-arthritis/

05/03/2026

41 pages of the up to date information on from 2023.

The Spondy Nerd is back and I've got a mega event recap for you for the Spondylitis Association of America's 5th Annual Global Spondyloarthritis Summit in May 2023.

👉 Use the Table of Contents to view topics. You can toggle to each topic by clicking on it in the Table of Contents. This is a concise breakdown of what I learned from each expert during the .

🎯 What is Spondyloarthritis? An Overview, Christine Stamatos, DNP, ANP-C
🎯 Medications for SpA – Including New (i.e. JAKs) and What’s on the Horizon. Drug Combinations and Interactions, Robert Inman MD, FRCPC, FACP, FRCP
🎯 SpA Research Update (Advanced Topic), Dr. Kristi Kuhn, MD, PhD
🎯 Cardiovascular Disease and Spondyloarthritis, Dr. Jean Liew, MD, MS
🎯 When Is Surgery Recommended? Joint Replacement and Spine Surgery, Albert Wong, MD
🎯 The Role of Genetics in Spondyloarthritis. Genes Associated (HLA-B27 and Beyond), Heritability (Advanced Topic), Judith Smith MD, PhD
🎯 Women and Spondyloarthritis: Childbearing Years Through Menopause, Professor Peter Taylor
🎯 Sleep and Spondyloarthritis, Soha Dolatabadi, MD
🎯 We’d Like To Know: Cannabis Update, Dr. Mary-Ann Fitzcharles
🎯 Diet and Nutrition: How/Why Does Gut Microbiome Affect Spondyloarthritis (Advanced Topic), Matthew Stoll MD, PhD., MSCS
🎯 Flares: Possible Triggers to Avoid & How To Treat a Flare, Dr. Pendleton Wickersham, MD, MSCS
🎯 Tai Chi: Meditation in Motion with Live Demonstration Soneka Lee, DPT
🔑 I've also included a GLOSSARY key for long-term words and acronyms in my text.

LEARN AND ENJOY!
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https://www.myseveralworlds.com/2023/05/29/saa-5th-annual-global-spondyloarthritis-summit-2023-event-recap/

05/03/2026

❓Did you know?

AxSpA is associated with an increased risk of life threatening blood clots? I know this well as I experienced it myself in July 2023 and will be on blood thinners for life now.

🚫 I'm pushing back on their comment about AS mostly affecting men though. That is wrong!

These myths can be pretty pervasive and it tends to make me trust less, so I will link to further studies that connect axSpA and clots in the comment section. Studies show AxSpA does not discriminate between sexes and affects women and men at a 1:1 ratio.

👉 A study by Arthritis Research Canada:

"Ankylosing spondylitis
associated with increased risk of blood clot condition

A recent study by Arthritis Research Canada scientists has revealed that individuals with ankylosing spondylitis (a type of arthritis that affects the spine, causes chronic back pain *and most often affects men under age 40)* are 53 per cent more likely to experience venous thromboembolism (VTE) - a blood clot that starts in a vein and can travel to the lungs (pulmonary embolism) - and 63 per cent more likely to have deep vein thrombosis (DVT) - a blood clot in the leg veins."

Link in comments

05/03/2026

The Freedom to Move with by Carrie Marshall for Spondylitis Association of America

The last time I wrote for the SAA I was testing a robotic exoskeleton. That was not the right for me.

Now I’m cruising in a Robooter X40 chair.

Here are some pros on the using a .

👉 Your step count goes up when you can focus on the things you love doing instead of burning through your daily energy doing things to live your life.
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https://spondylitis.org/patient-story/the-freedom-to-move-with-spondylitis-by-carrie-kellenberger/

Resilience and conviction—being your own advocate—aren’t unique traits, but for those of us navigating health challenges, they’re a way of life. We’re fighters. And that’s something to be proud of, whether we’re tackling the Grand Canyon or walking around the block.