One 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!
Rheumatoid Arthritis Guy is pleased to announce the release of his “Hope! Unlimited” mug, which is now available on Zazzle.com!
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”.
Disclaimer: Affiliate link. Some of the links in the post above are “affiliate links.” If you click on the link and purchase the item, I will receive an affiliate commission.
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!
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.”
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.
Arthritis 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.
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.
My wife and I live in Myrtle Beach, South Carolina, United States.
How long have you lived with RA?
I have had severe pain on and off for at least 7 years. I went to Orthopaedic docs, Podiatrists, GPs, and was always told I had OA or it was just from working too much. I used to be a store manager for a department store chain. I once wore surgical boots for 8 weeks to “stabilize” my feet. I was always given a brace and some pai meds and sent on my way. Two years ago I awoke to my wrists swollen to twice their size. I went to the ER and was put in a cast and referred to a orthopedic doctor yet again. This time I was put through a battery of bloodwork, xrays and mris, then referred to a Rhuematologist. I finally had a dx! RA, PA, Sjogrens and Psoriasis. Since then I have also developed Diabetes from the high dose of Pred I am on as well as Addisons. I also have high BP, and COPD.
What advice would you give to someone who has just been diagnosed with RA?
To someone newly diagnosed I would say that knowledge and support are everything. Make sure you are getting answers to the questions you have from your doctor. Research the internet and join support groups. You can feel VERY alone when you get a dx like this, it effectively changes your life, like it or not. You are not alone, there are many people out there in the same boat as you. Connect with them and share your fears, your knowledge, just connect, it will help a great deal. Get copies of your blood-work and research those as well, I wanted to know all there was to know about what I had, it made it easier to cope with. Depression is very common for people with autoimmune diseases, do not try to just block your feelings, If you think you are depressed, talk to your doctor. I take Zoloft myself for depression.
Do you use any mobility aids?
I use canes in my woodshop, forearm crutches in the house and a Power Wheelchair for any sort of distance or going outside. I had special shoes made by an orthotic doc that fit my feet exactly. I use Knorks (half knife, half fork) and wide handled cooking instruments. I have several pick up tools and aids for getting dressed. I have hand braces to stop my fingers from curling up at night. I also have a recliner that will stand me up when I need to get up. If it helps, USE it! Parking placards, wheelchairs, power chairs or scooters may seem an embarrassment to use. Once you find how much pain they will save you, you will not think twice about using them!
How has living with RA helped to improve your life?
I would say living with RA positively affected my life by slowing me down. I worked 80 hr weeks and commuted 3 hrs round trip a day. I am now on Long Term Disability and SSDI. My wife and I spend much more time together, and I have learned to appreciate the small things in life much more. I have also found many great people online through Rhuemamisfits and My RA central that have become great friends.
Do you have any visible signs of RA?
My hands are always swollen, red and several fingers are twisting. My ankles and feet are constantly swollen and red, and my feet are twisting sideways. I continue to find ways to do the things I love to do. RA will change you, but it doesn’t have to stop you!
Can you please describe some of your favorite coping strategies for living with RA?
My coping strategies, I pray. That always helps, God will not give you more than you can deal with. I also use online support groups, Rhuemamisfits, RA Central, etc. They can really help you to vent and to reach out to help others in the same situation. I also recently became a contributor for RA Central. Putting my experience to work to help others with this disease gives me a sense of purpose that I really needed.
Can you please describe your current medical (traditional and alternative) treatments?
Medical Treatments. I take Orencia once a month, Arava, Salagen, Morphine Sulphate, Oxycodone, Prednisone, Glucophage, Glucotrol, Potassium, Vit D3, Lipitor, Zoloft and a host of other meds. I also take OTC Folic Acid and Omega 3.
Is there anything else about yourself that you would like to share?
I have been an avid woodworker for over 20 years, and while I cannot do work like I once did, I am teaching myself to do small projects again. Currently I enjoy making simple toys for the neighborhood kids! Don’t give up on your life, find ways around the pain and keep yourself up!