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

By: Karen

Karen — Fri, 21 Jan 2011 04:44:31 +0000

Dear Kaye,
I appreciate your email and am glad I just received it. How are you now? Did my book help you and your husband?
Once I hear back from you with an update I will reply in detail. My spam is working now and you’re approved.
Thanks for your support,
Karen

By: Kaye Riley

Kaye Riley — Wed, 21 Jul 2010 01:29:34 +0000

Hello Karen- I heard you on the Chris Smith’s show & so did my husband who went out & bought your book. I am at present reading it as I still work & read when I can. I developed RA 6+1/2 years ago & up to then was always very fit under a Naturapath for a few ongoing problems. I am 61 years of age of small statue have always played sport (tennis ) competition & attend the gym. I can relate to your story so well even though I was much older than your having had my 2 children in my mid twenties. Mine started in my wrist one night after finished washing up & took off my gloves to see my left wrist inflammation & very sore thinking something had bitten me. My GP immediately put me on Voltaren & predisone as it was Dec & couldn’t get into see a Rheumatoligist until early Feb. After many tests etc. he put me on Sulzaparine + predisone+ voltaren + blood tests, nothing worked I gradually got worst just like you & I went off sulzaparine & went onto Avara then methotrexate ok for a while then everythink got too hard I continued working & tried to still do all I did before. I also tried treatment with my naturapath aswell but all got too much + expenseive. August nearly 2 years ago I was weaned off predisone then arava but still on methotrexate + voltaren then I gradually got worst could hardly walk get out of bed + all you mentioned in your book to do with everyday things. Dec 2008 I finally received my prescription for Enbrel this took 3mths to make any different but I am a new person now, am still on methotrexate voltaren( extra when playing my tennis). I had a full foot reconstruction last May 2009 as the RA had collasped my foot, had surgery by Dr Martin Sullivan a top foot spec. at St Vincent’s Private Hosp. He has fused all my small toes (no knuckles anymore & I still have a plate in my big toe, hopefully this will be removed when I have my other foot done next May. Getting over this operation requried a lot of physio + work at my gym, where I do the Pump class + the spin class( on a stationary bike) I have trouble walking a long way so prefer to attend the gym for exercise. As my RA spec said to me a few weeks ago “YOU DO LOOK WELL” at long last ( this was so good to hear)The only trouble I have is sleeping for long periods only seem to get a few hours here & there. It’s so good to read & relate to story as I really found it hard as nobody had RA or new anybody with the disease. My husband was in denial like I at the begining as he was always use to me doing everything. He still doesn’t really understand how I feel. I still continue my competition tennis twice a week & will continue as long as I can. Thank you once againg for your story. regards Kaye Riley (Burraneer NSW 2230)

By: Karen

Karen — Tue, 13 Jul 2010 22:39:25 +0000

Dear Di,
Thank you for your email. These responses to my book keep me going. Your final sentence of your comment tells me that reading ‘Enemy Within’ was inspirational. Your voice in your writing says ” I am luckier than a lot of other sufferers.” I congratulate you for your strength and resilience. Thank you for reading my book. I hope you will recommend it to others so we can all work together as a community to inspire others when the pain gets bad.
Take good care
Karen

By: Di Metcalfe

Di Metcalfe — Mon, 12 Jul 2010 01:26:05 +0000

Hello Karen
I heard your interview with Chris Smith last week, bought the book Saturday morning, and finished it that night – unputdownable! I related to your story so well, but I’m still not sure whether it inspired me or scared the hell out of me.
I was diagnosed with RA 3 years ago at the age of 52. It was a huge shock, as I’ve always been so healthy. So far the aggressive treatment (methotrexate, plaquenil, etc) is holding the disease at bay. I’m just hoping it keeps doing it’s job.
For me, the hardest thing has been to accept that I can’t do the things I’ve always done – especially walking any distance. Even with the treatment, I still feel as if there is a marble under the ball of my foot. Nevertheless, I think I’m luckier that a lot of other sufferers, am still working and still playing golf – even if I do use a motorized cart.
Cheers
Di