What It Was Like Being A First Time Patient At The American College of Rheumatology Conference

November 18, 2019

 

 

"The 20th century in medicine was the era of biomedicine, the 21st century has to be the era of the patient” - Dr. Theodore Pincus

 

I think being able to invite my health care providers, editors and some serious business head honchos in rheumatology to see me speak in another country really shows how far I have come since my diagnosis of rheumatoid arthritis 5 years ago.

 

It also shows that the patient voice is needed.

 

The American College of Rheumatology’s Annual Meeting is your gateway to global rheumatology education. With over 450 sessions, the meeting provides boundless opportunities for professional development, networking, and access to the latest rheumatology research and clinical applications.

 

 

As one rheumatologist from Jamaica commented on, I found my resilience. If you asked me what I was doing in 5, years after my diagnosis, this would not have been it, especially when I could barely see myself here the following day for a time.

 

It's important to keep moving forward, not back. Finding hope is crucial, acceptance is key.

 

As is treating my disease pharmacological, physiological and psychological. I learned that with my volunteer work with Pain BC.

 

A researcher said to me, I have applied science to myself and came out with positive results. That same researcher asked me to co-present a poster with her on Strength Training for People with Rheumatoid Arthritis. Fun fact, only about 1% of the 1% living with RA strength train. I feel like a unicorn. I plan to work with this researcher to increase that 1% strength training. Stayed tuned.

 

Answers to me lie in research.

 

Being able to speak at the conference to health care professionals was kind of like having a second, third, fourth, fifth, sixth, eightieth opinion on how I treat my health, most which came with a positive response except I was recommended to not sleep in the same room as my cat but you can't change a cat lady, he is there for moral support. You only get 20 minutes with your rheumatologist and wait times are an issue, many rheumatologists see up to 10,000 patients. I have a lot of respect for their work and dedication. Being around them for a week really shows you how human they are too. I was able to enjoy my last day with the kindest rheumatologist from England and another patient advocate. My take away from him is that diet is important but difficult to conduct accurate research because of simple things like what salt someone uses. I saw one presentation on the mediterranean diet which I typically try to stick to and quite enjoy while feeling good on. I did not see much else on diet and unfortunately had to miss the sessions on the microbiome.

 

I feel empowered to make even more positive steps forward and to share my results. I find those ways to move forward by participating in research studies, mostly with Arthritis Research Canada as I live close to their main head quarters in Richmond BC. If you are curious about participating in arthritis research, ask your rheumatologist where is best suited for you to get involved, they can guide you. It is important to participate in research to achieve accurate results. Your voice matters.

 

 

 

Each year Arthritis Research Canada sends members of their patient advisory board to attend the annual American College of Rheumatology conference. Having served on their board for the last year I am that lucky patient who gets to attend on a sponsorship. My year with Arthritis Research Canada has given me behind the scenes in the studies being done by Canadian researchers for all forms of arthritis and crucial skills in living with my illness. They've made me proud to be a Canadian with their work. In Atlanta I was able to see work being done by researchers across the world but meeting other Canadian partners again made me proud. I'm quite liking the work of CATCH. At moments it was definitely over my head and sometimes a little overwhelming at first but I could see how important the patient voice is in research. Overall I feel inspired to learn more and a knew appreciation for science and life when you see the reality of inflammatory arthritis up close. Why the diseases need to be taken serious, by all.

 

Travel with RA is not an easy thing to do. It is painful and exhausting and I didn't eat entirely the best in the south, everything is fried and I chose to treat it like a vacation. I would say Vancouver has more health concerned people than Atlanta. The only time I do get away are these conferences, once or twice a year. It's amazing to see how much preparation goes into fatigue, I spent months preparing myself to be as healthy as I could for this conference, even after surgery only a few months before. I was sad I was not as physically fit or healthy as I was before surgery but I had a lot going on over the summer. I handled it quite well and I am very proud of it, especially with how my health handled it during the conference. Unfortunately now I must worry about flare fear, the art of over doing it.

 

I've already got the doctor appointments lined up. It's important to stay organized with health issues like fatigue, memory and anxiety. It helps me feel in control of my life when my health is unpredictable every moment. It is also important to stay active. My physical transformation made me love the walking between sessions and how I would take the stairs while some doctors took the escalator. However I really can feel it after missing the gym for a week or more. It was important to take appropriate rests between and get a good night of sleep.

 

 

 

Amazing what a debilitating illness will make you appreciate being able to do and those who help you get healthier.

 

What I saw

 

The exhibit hall was an interesting place to walk through under the fluorescent lights from the pharmaceutical companies who's booths are definitely eye catching. RA makes it hard to regulate your temperature so those were a bit of a nuisance. They had delicious coffee and other treats to entice you. Happy to say my coffee addiction was covered, wasn't so great under those lights.

 

A lot of drug studies in the poster hall. I did not touch base on those so much this year but a future goal of mine to look into (and try to understand). A lot of this stuff was very scientific and over the average person's head. I find it important to keep an open mind when it comes to pharmaceuticals.

 

The Knowledge Bowl was impressive and I was happy to see this brilliant cat lady rheumatologist I follow on twitter win, again. It was like rheumatology jeopardy, quite the fun session.

 

Who I met

 

With a conference of 16,000 people, I was bound to meet some amazing people. Far too many to mention. The conference was a sensory overload experience and I was fueled with adrenaline.

 

One of the biggest highlights for me was other patient advocates who inspire me.

 

Alethea and her husband, she has probably read every blog post and article I have written while being the most supportive person to my advocacy. It was a treat to meet her in Atlanta. Charis Hill, Kelly English whom I went with from Arthritis research Canada patient advisory board as my mentor, Shanon Ragland Lake with The Arthritis Foundation, Jennifer Walker a beautiful artistic soul and Creaky Joints advocate, and Cheryl Crow of The Arthritis Foundation, Occupational Therapist and creator of the educational channel Arthritis Life.

 

What I did

 

I got to be the patient voice and see how important that is. While this conference was for healthcare professionals, they don't have something I have and that is lived experience with the inflammatory arthritis.It's not just patients who I am influencing but healthcare providers. I set out with this blog to help patients feel less alone now I am set out to help empower those living with and treating arthritis. This conference has made me a stronger advocate.

 

It was a huge honor being asked by Daniel Whibley a research fellow from the University of Aberdeen and Versus Arthritis and Anna Kratz to speak about the importance of sleep studies done for patients living with rheumatic conditions, to a packed room. Hats off to them for including the patient voice in their presentation at ACR. It was a blast! I loved every second of it.

 

What I learned

 

I found the studies on population quite interesting. What diseases effected different races or populations, how their outcomes are and what's going on all around the world with inflammatory arthritis. I enjoyed learning about the different types of inflammatory arthritis, spondyloarthritis and lupus.

 

This conference really showed me that arthritis is more than just joint pain.

 

 

The connections I made

 

I met so many of the organizations I've been involved with only over telephone or email. It was nice to put some reality behind all of this and meet face to face making more personal connections, especially about those who know some pretty deep things about me now. It was also amazing to see the impact I am making. I handed my card to people from Germany, Norway, the UK and more. The American College of Rheumatology is now following me on social media. Actemra, my biologic. I have previously joked about sending them a love letter, well I got to thank them in person and they wanted my card.

 

 

I also got to meet my editor at Creaky Joints which personally was huge, she knows a lot about me now that I've written or been featured on there about 10 times. I can put a face behind those involved with Creaky Joints, leading support, education, advocacy, and research organization for people living with arthritis and rheumatic disease. A great way to participate through research in the united states is through their Arthritis Power App. ArthritisPower is an innovative, nationwide research registry of patients with rheumatoid arthritis and spondyloarthritis (e.g., psoriatic arthritis, ankylosing spondylitis). The goal of the registry is to make patient care and management more effective by understanding and analyzing the patient’s condition on a day-to-day basis.

 

ArthritisPower is led by a Patient Governor Group, who identify research needs for study development and prioritize research requests from the CreakyJoints patient community.

 

We are stronger together.

 

My new goal

 

To speak again, but only if sponsored because this was not cheap.

Patient perspective poster. I want to speak about what research has taught me and how I have benefited it. I also want to present how being a patient advocate writing has been a cathartic experience for me while helping patients, the impact I have made and why. Arthritic fingers crossed.

 

To get a sleep study, I sort of had a room of healthcare professionals telling me to do so. A step forward for me is to change my some of my sleeping habits but that is really different to change your behavior with fatigue.

 

To look into breathing exercises to help my posture which I learned a bit about by attending a session by the Sponyloarthritis Association of America which thanks to Charis Hill for inviting me to!

 

To check if I have the HLA-27 gene.

 

 

What I would like to see

 

More studies on exercise

More nutrition studies

More psychiatric and arthritis studies

How stress impacts inflammatory arthritis

How the environment impacts inflammatory arthritis

More fatigue studies

More medical marijuana studies

More sleep studies

Patient perspective posters in the poster hall.

More patients involved and working together to change the future of healthcare

 

 

 

 

 

 

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