How Could I Have Forgotten to Blog About…..

…..being on the first cover of 2011 for Arthritis Today.
And …. to top off a great couple of months I just received the March / April issue of AT and Phil Mickelson is on the cover. To be followed by Phil is awesome! My brother is a big fan and so am I.

Arthritis Advocacy Summit Washington DC 2011

Thanks to Dr. John Klippel, President & CEO of the Arthritis Foundation, and Kathy Lubbers, my new friend and advocate, I was invited to speak to the national AF Board in DC. To be the voice of the millions of people who suffer from arthritis around the world was truly an honor. I spoke about the feeling of isolation and hopelessness that those suffering from chronic illness so often feel. People with arthritis are desperate to feel understood. I was deeply moved by the reaction of the Board members to my words. They gave me a standing ovation and spoke to me intently afterwards about how they could help people with arthritis to make the connections that they need to with each other. What was so heartwarming and momentous about this occasion for me was that the AF Board members truly listened to my message. They want to help and they want to make a difference in our lives. Most Board members had traveled for miles to be in Washington DC. They had left their families alone just to advocate for us! I was so proud last night.

Dr. Klippel tweeted: “Inspired by Karen Ager’s comments to the Board which touched my heart. If you care about arthritis, please read her book Enemy Within.”
My sincere gratitude to the AF for all that they do to help people with arthritis globally.

Mom’s Letter to Oprah ….Every caretaker should read this

For awhile my daughter Karen and I did not know what her life’s purpose was. At 17, Karen was diagnosed with rheumatoid arthritis. She has battled this disease for 30 years. There were times when she blamed it on me and she was angry. There were times when she made me cry. There were times when she was an invalid and couldn’t cut up her own food, bathe, or wipe herself after using the toilet. We lived through this together. Eventually, she found some medication to control her disease enough for her to become a teacher. One day, her grade two student noticed her crooked, bent fingers and her limp. He asked my daughter “why do your fingers stay bent like that?” She hid the reason. He asked again and again. Finally, Karen told her student why. His response, “now I know why you understand the kids in your class who can’t read, and the kids who can’t keep up.” From this day on Karen never complained about her excrutiatingly painful and debilitating disease. Instead, she has become the grass roots voice for millions of people around the world who have this unglamorous auto immune illness. Karen has lobbied the Australian Government for equal access for all Australians to get the medications they need, and she has written an award winning Australian memoir “Enemy Within”. Oprah, Karen’s life could have gone another way. But she found the courage to tell her story with brutal honesty so that she could stand up and make a difference. She has reached out and touched the hearts of all people who are trying to deal with their own enemy within no matter what that enemy is. For some, it maybe a battle with loneliness, for others it’s could be a loss, depression or maybe a battle with weight; no matter what the enemy is her book has helped to give hope to her readers. For this reason, my daughter is my hero and she is a hero to many. Karen’s life’s purpose is to help others to always have hope.

Karen and Arthritis Support Group meeting

Hi Friends,
Our next get together will be Wednesday February 9 at 6.45 p.m. I know it’s cold but let’s try to reconnect.
Venue – Cibo restaurant 2nd Ave @ the corner of
East 41 St NY. I welcome anyone who is dealing with chronic illness or pain, or readers of my book. All welcome.
We chat, laugh, tell our own personal stories and support each other.
After 6 months of not really being able to receive messages due to spam, I am thrilled to say that I am ready to roll now.

My Readers Inspire Me

And this is why I wrote my book ……My readers inspire me.

Dear Miss Ager,

You likely don’t remember me, I was a student at St. Lukes from 1990-1996. A friend of mine told me that you had written a book and that I should read it and I can say that your book has helped me gain some perspective of my own health battles.

2 years ago at age 24 I was diagnosed with an autoimmune disease. After 2 serious relapses I knew the diagnosis was imminent but it still didn’t make dealing with it any easier. Even now, I’m still struggling with accepting that I have a chronic disease that is extremely unpredictable and could cut me down without a moments notice. I often find that I can’t put into words how I feel and this makes it hard to get my thoughts out and deal with my issues. The most important message I got from your book is that I’m not alone in my struggles and that I have the power to shape my own destiny. I can either choose to let it win or I can fight back and make my life great! I’ve decided to choose the latter :) .

After completing the HSC I went to the University of Technology, Sydney. During this time at University I would notice that I had strange pains and increasing fatigue for no particular reason. Being young, I just put it down to indigestion and the stress of studying, but in hindsight I should have gone to the doctor. Once I graduated I decided to spend a year in Canada to work and travel and loved every minute of it! 6 months into my job I lost sight in my right eye and was diagnosed with optic neuritis. This was my disease rearing its ugly head. Fortunately after 3 days of prednisone my sight was restored. 11 months to the day after the optic neuritis I lost all feeling from my left foot all the way to under my left breast. As I crawled into my doctor’s office I knew the news wasn’t good. This time it took 5 days of prednisone but eventually the feeling came back. With this relapse came the official diagnosis and I was put on to immunotherapy which consists of daily injections. Thankfully I have not had a major relapse since but have had a few minor ones.

In 2009 I made the decision (with my doctor’s blessing) to move back to Toronto and take up a job opportunity with Macquarie. I left Sydney in May of ’09 and am still here in my apartment at Yonge & Bloor! I have fallen in love with Toronto the way that you fell in love with New York and really feel that this is where I am meant to be. I can only hope that I can find my prince charming while I’m over here…lol. I am active within the advocacy community and with Macquarie’s support have raised over $6000 in the last 18 months.

I just felt the urge to write to you and share my story as soon as I put your book down. Thank you for taking the time to put your thoughts, struggles and triumphs down on paper and to share with the world. I am inspired by your story and look forward to reading of your future adventures. If you ever find yourself in Toronto I would love to say hi and thank you in person.

All the best

Enemy Within by Karen Ager earns 5 Star Reviews

“As inspirational stories go, this is up there with the best.” Martin Stevenson of the Launceston Examiner – November 13, 2010

For more 5 star reviews copy and paste

Enemy Within – My Readers’ Fears and Hopes

I have received many emails lately from fans of my book Enemy Within. Some too personal to share, some full of fears and others full of pain.
Hope is always the last thing to go, so please hang in there.
Our disease maybe incurable, but having hope will help you navigate the lonely times and give you strength to face the future. Hope is incurable!

Karen and Arthritis Support Group meeting / Balancing

Our next meeting will be Wednesday November 10 @ 6.45 p.m.
We will meet at Cibo restaurant on 2nd Ave @ 41st.
I know some of my members ( now friends) have been unwell. I write this blog flaring myself. Why this week I thought? Well, my answer came swiftly. Stress and being over tired by doing too much. My goal at the moment is to find a healthier balance between work, home, book promotion and advocacy. I hope you will all find this balance too. I look forward to chatting about this on the night. Best Karen

To All Those I Have Inspired – Thank You

So many have contacted me to say my book has inspired them. Thank you so much.
My favorite quote so far “It’s not a book about disease, it’s about HOPE.”
Keep them coming. I am glad I am making a difference. It means the world to me.
Now Willie needs a walk :)
To my dad I Love you so much. x

Next Karenandarthritis Support Group meeting is 9/15/2010 at Cibo in midtown NYC

Enemy Within by Karen Ager / Actemra/ Support Group / Dr. Maggie Smith

Australian media, especially ABC radio, have embraced my book. I have done multiple interviews with them, both in studio and ‘phoners’ all over the country. Special thanks to the very talented Margaret Throsby for her in depth one hour interview about my book Enemy Within and to Singo for helping me to get on to the Chris Smith Afternoon show last week.
Both Margaret and Chris were great hosts and really professional.
Still hopeful of gaining an Aussie tv spot. Move over PM Julia it’s my turn now :)
It looks possible that Actemra , the new RA drug, will soon be in Oz. Lots of the 400,000 Australians with RA are still doing it tough.
They need greater access to these medications without having to get worse before they get better.
Support Group friends the next meeting looks like it will be a book launch event on July 21 on the upper east side. Please email me directly.
On a final note, Dr. Maggie Smith’s sudden and tragic passing this week is an immeasurable loss for the arthritis community. My prayers are with her family. Thank you Maggie for your decades of hard work for people like me.
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