Australia’s version of The View is The Circle
I am proud to say I will be on Australia’s version of The View tomorrow. It is a national talk show in Australia called The Circle.
Little by little we can change the perception of arthritis. They have been amazing about my book.
Karen x
7 comments
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Hi Karen
My mum saw you on The View today and told me about it. My husband & I have since down loaded and watched your segment. Our daughter who is nearly 3 was diagnosed with RA at 19 months, just her right knee and wrist initially, steroid injections were done and we were told they should last 12 months. Even after keeping a 19 month old splinted and none weight bearing for 72 hours for maximum effect the injections wore off within 6 weeks and she was diagnosed in her other knee and wrist along with both elbows and ankles. She now has a regeim of drugs including daily anti-inflamatories and methatrexate along with eye drops as she has a throw off condition in her eyes called Uveitis.
It’s in my family although I wasn’t made aware of this until Ashely’s diagnosis as we don’t see my Aunty who carries it from previous lines on my dad’s side. Although she was diagnosed at 19yrs and nobody else going back has been diagnosed before their 50′s.
Anyway, i was wondering if you feel the drug you are using is appropriate for my little girl or if it’s something they are still using on adults and not children. We see her specialist in a few weeks and I would love to get some feedback before I speak to her.
If you could meet Ashley you would see a beautiful, bright bubbly little girl who complains about nothing (except her blood tests). She takes her medications, lets the specialist poke and prod her weekly and the hospital staff over all departments, physio, optical and rheaumatology love her to bits and maybe being so young will make it easier for her to cope with down the track but I do struggle some times, this came from me and you just wish you could take it away just as quick. She was early in all physical development rolling at 6 wks, crawling at 5 mths and walking by 8 mths and then all of a sudden at 19 months she is crippled. The medications have changed that completley now and I think as her carere that gives me false hope that we are through the worst of it.
Anyway, any thoughts or comments you have would be great. Also if you know of any good support groups in South Australia or ways to meet other families dealing with the same would be great info to get.
It was lovely to see your story and how well you are doing.
Kindest regards
Nicky
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Aww Nicky,
So sorry to hear about your daughter, life is so unfair sometimes isn’t it!
I’ve had RA since i was 16, I am now 47 and its slowly chewed me up.
It started in my toes and I was treated for salt deficiency for 3 months, meanwhile it had spread to my knees and mildly everywhere else.
I have since had my knees replaced, hips replaced, ankle fused and I’m soon to have an elbow replacement. Like Karen my dear mum has been by my side the whole way and also my husband in later years. We try to keep positive about the situation and take it in our stride, which I think helps.
I live in Adelaide, if you would like to meet up for a coffee or give me a call I’d love to help you if I can. I know how sore your daughter is feeling. When I first had it I couldn’t bear the weight of the sheets on my feet without crying, its an excrutiating pain. Please let me know and I will give you my contact details or you can contact my via my business website www,berrybrowntanning.com
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Dear Nicky,
Hi …it is sometimes hard to know how to begin a reply to such a touching letter like yours. I am sorry for the pain that you are all going through. It must be so hard to see Ashley splinted up and sore. My prayers are with you; I can tell you are a very strong family. I hope to support and help you.
My general rule of thumb is to get a second opinion from doctors about treatment. So regardless of anything you should do that. I am on Humira, but it can only be given to children who are 4 years or older. There are many different biological medicines out there now so you should ask about these when you see your doctor. I can only talk about my personal experience with the various medications and everyone is different but do watch out for chest infections with methotrexate.
The burden of the disease on caretakers is huge. You and your husband may need to seek some counseling to help you get through these tough times. I don’t know of any support groups in SA as I am in New York, but you could contact the Arthritis Foundation in SA. Support groups are great but individual or family help is beneficial too. I think you are doing all the right things and I admire your courage.
RA has taught me about strength, resilience and optimism. I am sure you daughter Ashley has all of these characteristics.
I am on the Board for a children’s arthritis foundation that grants wishes and dreams to kids living with arthritis. If you read y book and feel a connection with me I would like Ashley to be the first child in Australia with RA to have her dream completed.
On my website there is also a 12 Step plan of what to do to cope with R A and some caretakers tips.
I really would like you to keep in touch.
You and your husband and Ashley are so brave.
BTW They do not know what causes arthritis so you can not and must not blame yourself.
Till later, know that you and your family are in my thoughts.
Blessings,
Karen
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Hi Karen
Firstly thank you for your message, compasion and insight. Sorry it took me so long to reply to you, I am new to this blog business and only just saw your comment and Paula’s too.
Just to clarify Ash isn’t in splints now. She only was for the 72 hours when we tried the steroid injections which didn’t last and that’s when we went onto the anti-imflammatory and methotrexate. Thankfully with all the physio and hydrotherapy she is doing she doen’t need splints. We thank our lucky stars for small blessing.
Thanks for the information regarding the Humira, to be honest when all this started we were told we had one of the best specialists in Adelaide and I have just gone with her opinion. I kind of feel disrespectful if I question her but reading all your website (which I had done before I messaged you) I now realise that’s not the way to think and when we see her in a couple of weeks I will ask more now we are a year on from the origianl diagonsis.
I am the kind of person that if an issue arrises I fix it, no dwelling and I struggle that I can’t do that with this and I dont’ know what the future holds BUT mostly I have stayed positive the whole time since the original diagnosis until recently when, as I mentioned, I realised the medication and resonably good place Ash’s is in at the moment had given me a false sense of security and the reality is that this is a progressive and degenerative illness and I had to come back to that reality.
But I truely haven’t cried as much as I did reading your post, i don’t have the most supportive family. I don’t want to live in the negative world but it would also be nice to believe that family (especially) realise the seriousness of the illness and Ash’s future so it was just so lovely to receive such a supportive message from you. It’s nice to feel that someone cares when I do have those little melt downs rather than it being brused off as an over reaction because, more than anything, it makes it so much quicker and easier to pick myself up again.
Your offer for Ash to be your first recipient to have her dream fulfilled was humbling to me, she is in such a good place at the moment that I feel like there must be a more deserving child out there but also know the good place she is in now may change at the click of our fingers and I guess that does make her just as deserving. I do want to read your book and it was my intention to buy it as soon as mum told me about you being on the Circle but since reading through your website I have to be honest I am a little scared to. I don’t know if I am totally ready to hear all the bad (although I am sure there is so mcuh good as well). I am not sure if I can cope with the total reality of the illness when I am trying to stay so possitive.
So saying that, we are in the process of trying to invest in a swim spa for Ash which may mean moving home and we really can’t afford that. It would be a down grade in home to get more land as our current place really won’t fit one in but this is my way of helping. I know the hydrotherapy is the best exercise for her and to have a swim spa here always at 32 degress temp that she can exercise in daily but also have fun is my way of taking control back of my feelings for now while helping her long term as well.
As they say, one step at a time.
Anyway, I have gone on for too long. Again i am so humbled by your sincerity and offers for support. I will definately stay in contact and keep you up to date with progress reports. I would also love to in some way become an advocate for Juvinile Arthritis. I think this would put a very positive spin on it for Ash as she gets older and starts to understand. There certianly isn’t enough understanding out there when it comes to illnesses like this that’s for sure.
If possible I would love to send you a couple of pics of Ash at some point with all her smiles even during treatments.
Thanks again
Nic
xxx
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Dear Karen,
One year ago when I arrived home after my daughters death, I had a bad fall on both knee caps directly onto concrete, with one leg going back underneath a step & the other going right in a contorted position towards a wall. I fell full force unexpectedly, instantly which jarred my whole skeletal structure. I have been healthy, 5’8″ tall, slim & in good physicAl condition most of my life, although I had major brain surgery in 92, because of a calcified cyst in the center of my brain, which had grown for 50 years.
During this past year, I have had some problems with soreness, pain & stiffness & my doctor told me recently that I had RA. Could a fall like that start RA or did I already have it & now it has flared up?
I am at a loss as to what to do or where to turn regarding the desease. Please I woud appreciate any direction you could give me as well as advice.
Thank You!
Jeanie
Jeaniesbest@aol.com
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Hi Jeanie,
I am sure many people will feel your pain when they read your email. I can speak from my personal experience only. The cause of RA is not yet know, but for me I truly believe I had an underlying pre disposition to the disease and that stress triggered it. The stress you were under because of your daughter’s death and the fall could have contributed to your diagnosis. The thing is that you need to find a medication that will control the disease. Once that is done you will feel more empowered to tackle the mind. The emotions attached to the disease are a day to day challenge. But we are here to support you and the Arthritis Foundation has some great supportive groups too.
My book Enemy Within (Amazon) will also be a bedside table support.
The first thing for you to do now is to get to the doctor and get the disease under control.
For now, take good care,
Karen
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To Jeanie Gibbs,
My name is Steve and it has been awhile since I have been on Karen’s blog.
I have RA and OA but first I would like to pass my condolences to you. It must be hard to lose any child.
I wanted to respond to your question about your fall. I have not heard of a fall or trauma that causes RA. I am also 5’8″ average built and 57. I have had RA since 2007 but diagnoised in late 2008. Prior I had 4 C-Spine surgeries since 2004. Last Nov 1st 2010, I started to take a walk with my neighbor and for no apparent reason my body just tripped and fell full force onto the cement. I did not trip on anything. My foot just gave out and face down I went. I had broken my 5th left Metatarsel bone longways.
I have had prior Osteo Arthritis and it showed up in the foot xrays as damage to cartiledge between toe joints. The doctor suspected the weakness of my toes just gave out and the bones are weak so a beak occured. It has been 9 months of which 3 months were in a cast. As of today the damage to both feet toe joints has increased.
I hope this helps in some way. Maybe your doctor can do an xray of both feet or complete joint xray’s to see if you have OA or bone density loss. I can tell you my joints are very stiff in the morning and I have pain and flare-ups from my RA, but since I was put on Enbrel and Methotrexate March 2010, I notice it is not that painful and the RA is in remission. I do get flare-ups and fatigue but everyone I write to or talk to with this disease says the same thing. Hopefully a cure will be found one day.
Jeanie, I also found that reading Karen’s book Enemy Within has really helped me more than any other book out there. It not only helped me to understand more about how this disease progresses, but it was a huge help to my wife and family who read it as they understand what I am going through daily. Karen has the courage and strength to share her life growing up with RA from a wheel chair in Australia to a huge Arthritis Advocate in New York. Her book is an incredible journey through the hardest of times. She is an inspiration to us all.
Take care and I hope you feel better.
Steve