New RA Blog

kittenbear; adventures in the wilds of arthritis

Porirua, Wellington, New Zealand: I am 29, an artist, a world observer and a deep (sometimes over) thinker. Recently happily married, starting a new life in the city where I grew up… after leaving 12 years ago. The reason I came home was arthritis. I had lived successfully alongside it for 13 years since I was 16. This is a journal of sorts, my first ever blog, hopefully of hope most of the time. I’ve just gotten through a 9 month battle with drug induced depression (my little black dog)after developing vasculitis (causing nasty ulcers) and as I find my feet again literally and mentally, I hope I can share something that helps someone else out there. I am very keen on diet and natural medicine right now, not from a preachy point of view I hope to be balanced. I’ve been on all the drugs I could stand for a while so I’ve drawn a line in the sand.

Kia Kaha (means stay strong, in Maori)
Arohanui (big love)

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NRAS & World Arthritis Day (October 12)

Make a ‘Joint’ effort for World Arthritis Day

Joint EffortWorld Arthritis Day aims to embrace people with rheumatic diseases, healthcare professionals and employers, as well as help raise awareness about the disease.

Please help us to support people with rheumatoid arthritis by raising awareness and fundraising in your workplace; all that we ask is for you to make a joint effort for World Arthritis Day!

Here are some joint fundraising ideas to get you started:

· Organise a sponsored three legged race at work

· Make cakes with your neighbour and then sell them to colleagues, friends and family

· Give up something you love with a family member or colleague, i.e. chocolate!

· Hold a sponsored tandem bike ride

· Have a dress down day at work

These are just a few ideas (the possibilities are endless!), but whatever you do, do it together and jointly we’ll help improve the lives of people with rheumatoid arthritis.

Print off the ‘Make a Joint effort for World Arthritis Day’ poster, and stick it up in your workplace to encourage your colleagues, friends and family to take part this year!

If you have any questions or would like some NRAS sponsorship forms, please do not hesitate to call Fundraising on 01628 501547 or email fundraising@rheumatoid.org.uk

Good luck!

The NRAS Fundraising Team

Read More: www.rheumatoid.org.uk/article.php?article_id=695.

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This Is My Life

“To become a spectator of one’s own life is to escape the suffering of life.” Oscar Wilde

this_is_mylifeA funny thing happened yesterday – Rheumatoid Arthritis Guy realized, once again, that the simplest of thoughts often lead to some of the most profound steps forward in life.

I was once again sitting in the back of a taxicab, making the almost fifteen minute journey from my house to my physical therapist.  I have made this trip so many times during the past few months (yesterday was my 41st session, actually) that I know every traffic light and stop sign along the way.

My entire body was is so much pain, that the discomfort of each individual joint sort of seemed to meld together into one big blob.  (I still remember going to see a showing of The Blob one Saturday morning when I was in elementary school…those were the days!) I knew that out of everything my ankles were hurting the most – but beyond that I couldn’t even tell if my wrists hurt more than my elbows, or if my elbows hurt more than my knees. All I knew was that everything hurt.

Normally, it would be at just around this moment when I would once again have that sensation that the world around me was falling apart (when in reality, the only thing that was really falling apart was my physical body). My eyes would tear up, feelings of losing hope would begin to start creeping into my mind, and on top of feeling physically lousy I would being to feel emotionally lousy.

But wait!!!

If you order now, we’ll throw in a free anxiety attack – complete with an increased heartbeat, difficulty breathing, and dizziness in the head.

But yesterday, none of this happened. All of a sudden, I realized that I had once again broken a mold in which I have fallen into for the past few years. And it was all the result of a few simple words.

“This is my life.”

Once again – experiencing pain that no words can accurately describe. This is my life.

Once again – sitting in the back of a taxicab, on the way to another afternoon of physical therapy. This is my life.

Once again – feeling completely winded from the most extreme of flares, which I experienced the day before. This is my life.

Once again – having a completely different combination of joints that work and don’t work to varying degrees. This is my life.

Once again – having no clue how I will feel the following day, much less the following hour. This is my life.

Once again – overcoming my internal alarms that go off every time I spend, spend, spend (just like the illness never ends, neither do the expenses) on another medical treatment or another month’s supply of medications. This is my life.

Once again – riding the emotional roller coaster that sometimes seems to compress the ups and down normally encountered in days down into a few seconds. This is my life.

With this, I completely preempted a routine that I have been through so many times before. I sat up a little more straight and looked out the window, as I continued to affirm to myself that this was indeed my life.

And just like that, my rheumatoid arthritis became a more integral part of my person. Just when I feel like I have achieved a total acceptance of my RA, I once again learn that I can get even more close to it, much more than I had ever imagined.

This has been my life for quite sometime now. I think it’s about time that I accept as much.

This is my life, and I love it!

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

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Another RA Blog

Carla’s Corner

Carla Kienast is the the Director of Corporate Communications for a high-tech company and the author of the acclaimed suspense novel, Wake up with Fleas (available at Amazon.com and through special order at Barnes and Nobel, Borders, and Outskirts Press).  She and her husband live in Dallas, Texas.

Carla lives with RA and has previously had a hip and shoulder replacement.

“I just started on Simponi (similar to Humira) after Humira didn’t work and I couldn’t tolerate Methotrexate. It’s relatively new and I was wondering if you or any of your readers have any experience with it.”

Glad you found us, Carla!

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National Invisible Chronic Illness Awareness Week

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96% of Illness is Invisible – Awareness Week Validates Those Who “look so good!” but Feel Awful

SAN DIEGO (2009) Nearly 1 in 2 Americans has a chronic condition, and 96% of them live with an illness that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy. Sixty percent are between the ages of 18 and 64.

September 14-20, 2009 is National Invisible Chronic Illness Awareness Week. The theme is “A Little Help Gives a Lot of Hope.” It is a major public awareness campaign sponsored by Rest Ministries, an organization that offers a supportive environment for those who live with chronic illness or pain.Sept 14-18 NICIAW features a free virtual conference with 4 seminars each day available to listen to live or download later.

Paul J. Donoghue and Mary Siegel, co-sponsors of the week and authors of Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness say, “Invisible chronic illnesses (ICI) have symptoms that are difficult to see and impossible to measure such as pain and fatigue. So those with ICI frequently encounter not compassion and support but impatience and skepticism from physicians and loved ones.”

“Living with an illness that is invisible to those around us can often have a more devastating affect on our emotional health than the physical pain,” explains Lisa Copen, 40, the founder of Rest Ministries who lives with rheumatoid arthritis and fibromyalgia. She was recently awarded the Audience’s Choice Award for Women’s Health Hero of Our Bodies Ourselves out of nearly one hundred applicants. “Each day we must choose to thrive, to do something out of the ordinary, or make a new friend. It’s easy to get in the habit of living a life of survival.”

Copen is the author of a book, Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend. “A large part of our campaign is reminding people that just a little help to someone who is ill or hurting can give them a lot of hope.” says Copen. “Just because someone isn’t using a wheelchair doesn’t mean that she doesn’t have a disability. Friends and family of those with chronic illness care a great deal about what their loved ones are going through, but oftentimes the invisibility of the illness sets up an environment for misunderstandings and even doubt about the validity of the illness. We hope to increase awareness of how many people ‘look great’ but are hurting deeply.”

Outreach includes various events: the distribution of free literature such as cards with multiple ways to encourage a chronically ill friend. Other resources include You Look So Good: A Guide to Understanding and Encouraging People With Chronic, Debilitating Illness and Pain. Churches and organizations across the U.S. will be participating by in having people share their stories. T-shirt, bumper stickers and other promotional items are available, including PSAs and sample proclamations. Seminars will be held online during the week.

For a complete list of events and resources visit www.invisibleillness.com or call 888-751-7378. “The feeling of knowing that one’s illness and pain is acknowledged can have a great impact on how a person copes with living with illness,” says Copen. “We hope that by recognizing people with illness rarely feel as good as they look, they will begin to feel better understood, leading them to a more invigorating life!”

More Info:

ArthritisJoints.com – Lisa Copen Interview on National Invisible Chronic Illness Awareness Week, Part 1 and Part 2.

Getting Closer to Myself – Guest Blogger: Lisa Copen.

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