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
Amanda
9 comments
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Hi Karen,
I am 40 years old and was diagnosed with RA a year and a half ago. I am managing well now on a biologic and other meds. I try to be physically active everyday with swimming, biking, running, kickboxing or yoga. I actually did a triathlon a year after diagnosis to fight back. I wrote in black ink “in your face RA” on my back. I am interested in finding an arthritis walk or run in my area. How would I find out when and where?
Thanks,
Heather Maynard
Beckley, WV
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When I went to my rheumatologist for my normal checkup, I picked up a copy of “Arthritis Today” and went to the article about your battle with arthritis. Wow!…it was like reading my own history with this nasty disease!
I’m 51, was diagnosed with R/A when I was 22. While reading the article, I found myself thinking, “yeah, I know what that’s like,..yes, I have that deformity, too…” and so forth. This is the first time in 28 yrs. of this disease that I could really connect with someone else who’s battling R/A because your story so closely mirrored my own. I will be getting your book, “Enemy Within”. Thank you for sharing your story! Susan in Ohio
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Dear Susan,
Thank you so much for your email. I read it to my husband as it was very touching. I wrote the book to reach people like you so I really hope it helps. I am sorry you have been living with this illness for so long, despite this you sound amazingly resilient.
Please let me know if you like the book. There are also reviews on Amazon.
Thanks for reaching out.
Take care
Karen
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Dear Heather,
Thank you for your email. Glad to hear you are managing well on the meds. I can’t believe you kickbox and run triathlons. Good for you! I suggest that you contact your local Arthritis Foundation chapter or the national office as I know there is an annual Jingle Bell run in many areas and most chapters do the Arthritis Walk around May which is Arthritis Awareness month. Congratulations on your bravery and courage.
Take care and let me know how you get on,
Karen
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Karen,
I enjoyed reading your article in Arthritis Today. I’ve had RA since 1989. My RA attacked my spine. As a result I had to retire from teaching last year. I could relate to what you have experienced with RA. My husband read the blog about caregivers; it brought him to tears. You are a true inspiration; you have accomplished so much. I manage my RA with enbrel, prednisone, methotrexate, and anti-inflammatory pills. It was wonderful to hear that someone knows what I am going through. I will buy your book. My sisters know I have RA but don’t really know the day-to-day pain I experience. Thanks for the hope.
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Hi,
You and your husband are truly the reason why I wrote the book. Thank you for you beautiful words which help to keep me inspired to share my story.
I feel that it is often easy to forget about the stress that being a caretaker can have on one’s self and on a marriage. I am certain that our partners feel very isolated and helpless at times. I’ve had messages from husbands, wives, mothers, fathers, brothers and sisters and they’ve all said I never understood what ……was going through. I hope the reading you’ve done on my site has brought you and your husband closer together.
Always have hope….I’m here to help
Best
Karen
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Hi Barbara,
I read you blog to Karen and you mentioned caregivers/husbands. In my case I am the one with RA and take the same medicines you do and my wife/caretaker had tears to her eyes when she read Karen’s book just after I did.
I am sorry to hear you suffer day to day pain. It was hard for my wife to understand in the beginning too but she went to my RA doctor and read up on this disease and after Karen’s book, she fully knows how bad this can be without feeling the physical pain. As Karen said, Always have hope and try to be positive when you can. My wife and I look up to Karen for the kind words she says and the one thing few people talk about is the caregivers. It is not their fault for not understanding unless they get a disease themselves. But if we can educate them and ask them to read up on the internet and attend at least one visit to our doctor, they become very supportive. Thank you for your blog and if you have not read Karen;s book yet, please do. I got my copy from Amazon.com.
Blessings
Steve P.
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Karen, this is such a lovely letter. When I was first diagnosed, I felt so alone but I started to feel less alone when I started reading the stories of others struggling with RA and Fibro and how they were still living their lives with and despite their conditions. Thank you for telling your story and you are absolutely right, this is best reason for sharing your story and your struggles.
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Dear Lana,
The world of RA has certainly changed for the better over the last 30 years. This online support is amazing.
I have to say my mom has suffered just as much as me because of this disease.
Fortunately, we are both in a place right now where we’ve accepted it and know for sure that life can still go and be good with RA
I hope you are feeling okay and I love that you blogged. Thank you.
Take care and keep in touch
Karen