Are You Talking About RA?

RA Guy PhotoOne of the most common statements that I have heard over the past few years, from people living with rheumatoid arthritis, is the importance of trying to make others–family members, friends, co-workers, and complete strangers–aware of how severe an impact this disease has on our lives. Actually, what we need goes beyond just having people understand the nature of this and other autoimmune disorders; although without a doubt, this type of education is a good start. What we need is support, a strong network of individuals who continue to let us know that they know what we are going through.

Sometimes the best support in the world is that email from an old college classmate that arrives, just as you’re dealing with another challenging start to your day. Other times, support includes a small token of financial help, which is profoundly appreciated especially when money is low and you’re wondering how you’re possibly going to pay for all of the medical expenses which never end. This support need not always be based on the pain and disability which, at times, overwhelms our lives. A simple conversation, joke, or anything else that takes our minds momentarily off our constant struggles…well, these can be the greatest gifts of all.

By authoring this widely read blog over that past few years, I have been fortunate enough to receive this support from individuals living all over the world. (Well, mostly in English speaking countries such as the U.S., Canada, U.K., Australia, New Zealand, and South Africa.) And even though I had not kept the fact that I live with RA a secret in my personal life, the ironic thing is that I had never really introduced this blog–or my disease–to the many, many people who have been a part of my life during one time or another, such as high school friends, college and grad school classmates, former professors, past co-workers, and extended family members.

All of this changed yesterday, though. In my desire to share my “Hope! Unlimited” mug with as many people as possible, I started digging up old emails and reaching out to friends. Even though I occasionally posted links to certain RA Guy blog posts on my personal Facebook account, and my image shows me walking with crutches , I realized that I had never really come out to many people.  Although I often post a status update about the pain on a particularly bad day, I had never directly stated: I live with RA, and RA is [insert simplest explanation possible].

It feels good. It’s nice to know that today, they are many more people reading this blog…and they know exactly who I am. Sure, this blog is personal as heck at times, and I make no attempt to hide the struggles, both physical and emotional, that I face on a daily basis. But this is what it takes to increase awareness of this horrible illness with which we live.

It think the inherent reaction that we shouldn’t talk about certain things is always going to be there, but this is just one more challenge that we need to overcome.

We must keep talking about the challenges that we encounter from this disease for which there is no cure. We need to describe the good, the bad, and everything in between. We have the right to vocalize the support that we are looking for from others, whether its from our family and friends, or from our governments.

More and more people are listening. Are you talking about RA?

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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RA Guy’s “Hope! Unlimited” Mug

Rheumatoid Arthritis Guy is pleased to announce the release of his “Hope! Unlimited” mug, which is now available on Zazzle.com!

PRODUCT INFORMATION

RA Guy's Hope Unlimited Mug

This mug was especially designed for all superheroes who are living with rheumatoid arthritis, including their friends, family members, and co-workers.

Hand drawn by RA Guy, the art work includes some of the most popular comic book images from his website. The white text on the blue sky is from his “About Me” page, which represents the first words that were ever published on his blog.

You too will feel like a superhero when you use this mug!

Help superheroes like myself overcome “Flare Incorporated” and reach “Hope! Unlimited”.

Ceramic Mug: http://www.zazzle.com/hope_unlimited_mug…

Travel Mug: http://www.zazzle.com/hope_unlimited_travel_mug…

One of my less frequently discussed challenges of living with a chronic and debilitating condition like rheumatoid arthritis is trying to figure out how to continually pay for all of the costly doctors visits, physical therapy sessions, and prescription medications…especially now that my illness allows me to work only a few hours a day.

Your purchase of this mug, which I spent all weekend designing, would be greatly appreciated. Your kind contribution would not only allow me to gain the satisfaction of knowing that I continue to do everything within my means to be financially productive, but it would also help to increase awareness of this disease with which I live.

Thank you so much for your help.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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The Seated View: My Best Friend

My body is my best friend.

Odd? The woman with RA and fibromyalgia, wheelchair user since the age of 16, the one who lives with high levels of chronic pain and disability and I could keep this going for a little while, but that would get boring and prevent me from getting to the point. So yes. That woman. Me. I consider my body my best friend.

Read More: http://theseatedview.blogspot.com/2011/06…

Thanks for this important reminder! Sometimes when living with chronic illness, it’s all to easy to start to get angry with our body…but we have to continue to love it and give it as much support as possible. As Lene writes, it is indeed our best friend.

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The Ignored Majority – The Voice of Arthritis 2011

Report estimates there are two million six hundred thousand (2.6 million) Australians with inadequate care, who are needlessly suffering pain, have difficulty getting about and are being disadvantaged at work. They feel let down by general practitioners, specialists and the health care system.

“It’s shameful,” says Professor Patrick McNeil, President of Arthritis Australia. “We commissioned a high quality survey representative of Australians living with arthritis and found that you can compare three people with the same kind of arthritis, of the same severity, who’ve had it for the same length of time and have the same level of education and income – yet their arthritis has very different effects on their lives at home and work. The ones who do worse have less access to general practitioners (GPs), physiotherapists and specialists, appear to be receiving less adequate care when they do see these clinicians, have less access to information about their arthritis and are spending more money out of pocket on getting treated. And ultimately they are going to cost more to treat.”

Read More: http://www.arthritis.org.au/page/About_Us/Latest_News…

Arthritis statistics

Nearly one in five Australians has arthritis. Arthritis impacts directly on 3.85 million Australians (or 18.5 per cent of the population) and indirectly on their businesses, colleagues, friends and family. By 2050, it is projected there will be 7 million Australians with arthritis.

Arthritis costs the economy about $23.9 billion a year.

Emotionally and socially, the hidden costs of arthritis are immeasurable.

Arthritis is Australia’s major cause of disability and pain and was declared a National Health Priority in 2002.

aq_logoArthritis Queensland is a partnership between people who have, or at risk of, arthritis and osteoporosis and their carers. We are united in our passion that people who have, or at risk of, arthritis and osteoporosis will have access to and participate in every part of life they choose.

We work to understand the daily challenges people must overcome and work with them to achieve the outcomes they want – whether that’s coping better with their pain, better managing their wellbeing, maintaining their independence, or keeping their job.

Information – download one of our information sheets on arthritis or request one of our free booklets on arthritis or osteoporosis.

Education – Education seminars for the general public and also health professionals are held regularly throughout Queensland on both arthritis and osteoporosis. See our events page for more details.

Support - Arthritis Queensland endorse many support groups throughout Queensland. To find the nearest support group to you, visit our support group page.

Research – Arthritis Queensland contributes significant research funding into the search for a cure for rheumatoid arthritis. This initiative is conducted in partnership with the University of Queensland and the Princess Alexandra Hospital. Arthritis Queensland contributes annually to the Arthritis Australia Research fund.

More Info: http://www.arthritis.org.au/

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