Karen & Arthritis » arthritis

Hope is Incurable – Arthritis Support Group

Karen — Fri, 19 Aug 2011 23:33:15 +0000

Hi Everyone,
I look forward to sharing an evening with you at Cibo restaurant.

Where? 767 2nd Ave between East 42nd and East 41 St in Manhattan.

When? August 24, 2011 at 6.45 p.m.

We’ll share some stories and offer support.
I hope to see you there,
Karen

Information on RA

Karen — Thu, 03 Mar 2011 04:44:16 +0000

Dear Rick,
Hi. Thanks for contacting me. I just want to say first of all that doctors still do not know the exact cause of RA. So please do not blame yourself. I am sorry to hear about your daughter Courtney. The pain that both you and Courtney feel is immense and it’s both physical and emotional. My mom suffered just as much as me.
I would suggest you contact the arthritis office in Arizona or the national office fir advice on Doctors. I will add though that my doctor doesn’t take my health insurance either, but my medications are covered and I get blood work done elsewhere. The key is to
treat RA aggressively before joints are damaged. This can mean
biologics. I inject every two weeks. Everyone’s reaction is different
though.
I think diet does play a small part. Bread for me is not a good idea.
With your permission, I’d like to put you in touch with a man called Brian. He has a daughter with RA too. I sense that you could be a big support to each other.
I hope I’ve been able to help you. My book, Enemy Within is available in Amazon and is about my journey with RA. It is raw and honest. I do talk about natural remedies but I feel they actually made me worse not better.
Anyway I hope I’ve been of some help.
Best
Karen
Sent from my iPhone

On Mar 1, 2011, at 1:08 PM, ……. ” wrote:

Hello Karen, My name is Rick and I live in a small town in Arizona called Williams. It is located about 65 miles south of the Grand Canyon National Park. Any way I was reading your story in arthritis today magazine. I was in a clinic getting a physical. My daughter Courtney suffers with RA. I must have evidently passed this terrible disease to her at birth, in 1976. My Mother, God rest her soul battled this condition her whole life. It disfigured her tiny hands terribly. And I fear that will be the same fate for Courtney. What I am writing you about is, if you might know of some good doctors in the Phoenix, Az. area. Or how we would find one. There is a Dr. Epstein in Flagstaff, Az. but he will not accept my daughters insurance, even though her carrier would pay it. He evidently will not work with her insurance carrier, but is more than willing to see her “out of pocket” and then it’s up to Courtney to submit the paperwork and bills. This could be very expensive I fear. Unless he is willing to review her records and blood work from her previous study group she signed on with. But I doubt it because most Dr.’s probably want their own lab work. This is VERY frustrating. Courtney had been apart of a study that has been treating her the past year with shots. She was told that some would get the real thing and some would get a placebo shot. Well…….I for one do not think that even if she is getting the real thing, that this medicine is working. I have no idea what the shots contain. Is there a book on diet you could recommend, or is that necessary? Courtney tries to eat healthy, and is currently drinking “Just Tart Cherry” by “R.W. Knudson” “Organic” which very much seems to be helping with the stiffness in her knees, and other area’s of concern. Is you book about treatments or things you have tried? Does diet have a lot to do with RA? I also remember you mentioning bio-medicines you’ve had success with.Well ………….. I appreciate very much your time today, and wish you the best in life, and pray for your healing. Hopefully one day medicine will be discovered to help all the people that suffer with this terrible condition. Once again, thanks for listening to me………

How Could I Have Forgotten to Blog About…..

Karen — Tue, 01 Mar 2011 03:57:36 +0000

…..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

Karen — Tue, 01 Mar 2011 03:42:12 +0000

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.

My Readers Inspire Me

Karen — Thu, 06 Jan 2011 04:36:03 +0000

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
Amanda

Enemy Within by Karen Ager earns 5 Star Reviews

Karen — Sun, 28 Nov 2010 17:13:03 +0000

“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

http://www.amazon.com/Enemy-Within-strength-determination-acceptance/dp/1741108500

Enemy Within – My Readers’ Fears and Hopes

Karen — Wed, 10 Nov 2010 02:11:29 +0000

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

Karen — Thu, 07 Oct 2010 08:46:14 +0000

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