Living With RA Makes Me Strong
RA Guy on February 1st, 2010
Living with rheumatoid arthritis can, at times, be a lonely experience. Though I continually try to share with those around me what I am going through, words alone will never be able to accurately describe the pain that this disease brings into my life. The erratic nature of this illness also makes it difficult for some people to understand the seriousness of my situation. If I put myself in their shoes, I can begin to see why. After all, if someone sees me walking around with relative ease during the afternoon, it might be easy to dismiss the challenges that I encountered earlier that day, when I was unable to get out of bed due to pain and stiffness in my joints.
Peer Mentoring Program Featuring Sara Nash June 22nd, 5:30 EST
Join Dr. Laurie in an intimate, peer mentoring conversation over the phone with other CJ members! Space is limited.
This year Creaky Joints will have peer hosts who will introduce the topics and offer their perspective, while Dr. Ferguson moderates.
The purpose of the call is to build support and encouragement for those who live with RA and other autoimmune conditions. Creaky Joints is sharing strength and experience so that each person learns something new, and contributes their best practices for the daily living.
Sara Nash, author of the blog: Single Gal’s Guide to Rheumatoid Arthritis hosts June 22 on the topic, “Dating and Relationships.” This call will feature Sara Nash’s funny and wise stories about dating and relationships when you live with RA. She will bring her best advice and answer questions for those who join the call. We are looking forward to laughter, good ideas and inspiration!
Each call will be an hour. To register, contact Creaky Joints here. They will send you a confirmation email including the toll-free number and access pin.
Welcome to CreakyJoints, a community for people of all ages with arthritis who want to live their lives despite their condition. A place where having a little chronic pain (or even a lot of chronic pain) is OK, because there are others within earshot who understand.
More Info: http://www.creakyjoints.org.
The Single Gal’s Guide to Rheumatoid Arthritis
One single woman, one crazy city, and a chronic disease
By JANE E. ALLEN, ABC News Medical Unit
June 16, 2011
In the summer between high school and college, Angela Lundberg saw a life full of possibilities turn into one of limitations when doctors explained that the pain that had started in her feet and spread to her fingers came from rheumatoid arthritis.
“The only person I knew who had it was my grandma and she got it when she was in her 60s, I think,” the Minneapolis native, now 32, recalled. “The day I was diagnosed, I remember going home from the doctor’s office and crying alone in my room thinking about my grandmother’s ugly twisted fingers and collapsed knuckles. Was that also my fate at age 18?”
Although Lundberg had no idea that the complicated and incurable disease could strike in the prime of life, a surprising number of the 1.3 million Americans with rheumatoid arthritis are young adults from 18 to 40. These are prime years for building careers and having children, when they can hardly afford to have plans disrupted.
Watch video and read more: http://abcnews.go.com/Health/ArthritisAdvice/rheumatoid-arthritis-takes-toll…
Thanks to @letsmove2gether for the hat-tip!
Wow, this is the second really informative article that I’ve seen this past week in the main stream media. (Here’s the first.) It’s great to see that the discussion is going beyond the usual simple details, and it’s particularly nice to see emphasis placed on the young age of many people who live with rheumatoid arthritis!
Even though the official start of winter is still a few days away (I’m in the southern hemisphere), the fact of the matter is that I have been experiencing cold weather since the end of April. And yes, the temperature/forecast on the right is real and current; I just grabbed this image as I sat here typing these words.
For most of my life, I absolutely loved winter. Well, let me be a little more clear…I loved the idea of winter. Growing up in south Texas, winter was nothing that an occasional cold front that made the temperatures drop in the 30′s or 40′s for a day or two. Even more rare was the “freeze”, those times when the thermometer reached 32 degrees or below (if only for just a couple of hours). I was in the land of “Winter Texans”, retirees from the northern U.S. who would temporarily reside in my part of the world during the winter months. If you compare this with the images of winter that I saw on television and in the books I read, you might be able to start to understand why I was so in love with winter.
Years later, I actually began to know what winter really was. As a 15 year old exchange student, I lived in northern Italy at the foot of the Alps. I still remember that first morning when the air was just a little colder, and the hills that I could see from my bedroom window were dusted with snow. A few years later I was a college freshman living in New York City. (Hint: don’t sign up for Intermediate Swimming at 8 a.m.! It might be fine in September and October, but just wait until November and December, And yes, Columbia College required two semesters of physical education!) And as if that wasn’t enough, I then went to live in Boston for four years as a graduate student, where snowstorms and winter reached previously unknown levels of severity.
Next up was San Francisco, California. Sure, this city is generally not know for its rough winters, but as the saying goes: “The coldest winter I ever spent was a summer in San Francisco.” Oh how true those word were…
This was followed by the place where I currently reside in South America, which is located 12,000 feet above sea level on top of the Andes mountains. Yes, the air is quite thin, the local commercial airport is the highest in the world and has an extremely long runway as airplanes take twice as long to gain enough lift to take off, water boils at a much lower temperature (I always, always, always burn my tongue drinking my first coffee whenever I’m back in the U.S.), and baking is just..well, plain difficult. But the winters here are anything but traditional…during the day, when the sun is out, you absolutely burn up. However, when that big ball of fire in the sky drops, temperature plummet…and there is no doubt that you are, for some strange reason, two miles up in the sky on top of a mountain, freezing your a** off.
It was right around this time of year, many years ago, when I received my first autoimmune disease diagnosis. (I’m not sure if I’ve ever shared this, but I was originally diagnosed with ankylosing spondylitis. A year later, I was told that I had seronegative rheumatoid arthritis.) And right around this time, I started to hate winter. I associated the cold weather with the pain in my joints. For the first time ever, I started to yearn for my hot childhood days (minus the horrible humidity, of course.)
Over the past few years, I’ve had a love/hate relationship with these cold winter months. I’ve learned to accept them and prepare myself as much as possible for them, but deep down inside I still wouldn’t allow myself to really like them. All of this changed just a little over a week ago, though. Wren from RheumaBlog shared with me how much she enjoyed winter. And just like that, the part of me that always loved winter was once again awake. (Thanks, Wren!)
I really do love winter, I told myself! I like snuggling in bed and not wanting to get out, all of the gloves and scarves and hats, and the warm mugs of tea and hot chocolate. (Online I’ve come across plenty of plastic mugs with two handles, but I’ve yet to find a ceramic mug with two handles. Does anyone know where I can find one?)
Sure, dealing with the cold is not always easy. Just yesterday I had a really bad flare, which moved even my physical therapist to tears. It”s easy to blame this flare on the cold weather, but the truth of the matter is that I experience flares like this year round, on cold and hot days alike. So maybe the cold isn’t such a bad thing after all. I will continue take care of myself during winter (which I used to refer to as My Own Personal Ktyptonite), but I will also allow myself to enjoy the good things that come as a result of the cold weather.
Maybe winter is something that I can still love, rheumatoid arthritis and all!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Contribute to face Rheumatoid Arthritis.
Join us on Sunday June 19th at Beirut Souks and pick up your Walkathon T-Shirt.
•Gathering at 10:00AM in Tripoli Square near Ajami Square of Beirut Souks
•Join us for the START Group Picture at 10:10AM
•It is a morning walk of 1km around the streets of Beirut Souks
•Invite your friends and family members to join us to face Rheumatoid Arthritis
For more information
you can call 71 02 49 59
First Rheumatoid Arthritis Awareness Month launched
BEIRUT: The start of Lebanon’s first ever National Rheumatoid Arthritis (RA) Awareness Month was announced Wednesday.
Sponsored by the Health Ministry and the Lebanese Society of Rheumatology, alongside the Association of Arthritis Patients in Lebanon, the month-long campaign will raise awareness about the prevalent autoimmune disease, thought to affect around 20 million people worldwide.
IRADA-Association of RA Patients in Lebanon is a non-profit patient support group that defines itself as a dynamic association of exchange and support that ultimately generates strong team spirit, joining the patients as well as the medical body and the funding thirds. IRADA is formed by willing RA’ers aiming to get this unknown and complex disease known to the public.
- To facilitate the dialogue between RA’ers and specialists
- To sensitise authorities and general public to the problems caused by RA
- To fight for patients’ rights
- To stimulate medical research
- To advocate for equal access to effective treatment at the right time
HOTLINE: +961 71 024 959
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