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Tuesday, November 10, 2009

We Have Moved!

The Arthritis Ireland Blog has been moved to our own website...for uptodate blogs, news and events visit http://blog.arthritisireland.ie/

Thursday, October 22, 2009

Niamh Costello's Story

Thursday October 22nd

Monday
Niamh jumped out of bed looking forward to her week ahead as you can guess Niamh in great form..What a great feeling to have when Niamh comes into our bedroom smiling.. She has done her physio routine put on her muscle rub and is ready for breakfast and her medication. When she comes in from school we go for a swim and Niamh just loves it..

Tuesday
Niamh in great from she goes swimming with her school and tells me she was in a relay race and loved it..I later get a phonecall from another child's mother to tell me Niamh was upset at swimming today as the team she was picked to be in complained they didn't want Niamh on their team as Niamh had arthritis and would slow them down.. I am really mad but I decide not to say anything to Niamh she has had a course of counselling to deal with any negative feelings so I feel it best I leave her to stand up for herself she is 10 and will come up against children who don't understand again and agian..

Wed
Niamh doin great today and goes into school to see an article she did for irish exaiminer posted up in all school rooms.. The principal had organised it.I get a phonecall from another parent woth arthritis having a tough time at the moment and we share our worries..

Thurs
I was on local radio a few weeks back talking about arthritis and I get a phonecall from a guy selling a product called juice plus. he says it will help to boost immune system.. I come offf the call and have a good cry I find it upsetting to read and hear of all these cures!!! I know they work for some people but I have tries a hell of a lot of things and nothing as good as the Meth. yet.. The reason I feel upset is the fact I feel I have to try these things... I owe it to Niamh to try...Niamh heading to her physio today she looking forward to it because she will be able to push herself today as she pain free...

Monday, October 12, 2009

Kids with Arthritis Deserve Better


Young people with arthritis decided that enough was enough and are joining forces with Arthritis Ireland to campaign for improved paediatric rheumatology services. Launching Kids With Arthritis Deserve Better during National Arthritis Week, they are calling on people to visit www.arthritisireland.ie to sign their petition demanding the immediate appointment of a second paediatric rheumatologist.

There is currently only one paediatric rheumatologist for the 1,000 children in Ireland living with arthritis, who also has a commitment to general paediatrics. As a result, children with arthritis are being forced to endure chronic pain, risk deformity and muscle wastage as they wait up to 13 months for an appointment with her. This is in sharp contrast to the international best practice recommendations that children with arthritis should be seen within 6 weeks of onset of symptoms.

Breffni Molloy speaks about how limited access to rheumatology services impact's on his life...

My name is Breffni Molloy. I was diagnosed with Juvenile Arthritis at the age of 13 during my first year in secondary school. As I live in Co. Galway, I was referred to an adult rheumatologist and she referred me to Dr. Killeen to make the final diagnosis of juvenile idiopathic arthritis.

At this stage, the arthritis had spread from my foot to my wrists, elbows, shoulders and knees. I was in a lot of pain and found it very difficult to do normal things like getting up in the morning, which could take up to an hour. I found it very painful to walk and spent nearly all the time in bed or lying on the couch during the day. I missed seeing my friends every day as I wasn’t well enough to go back to school for the rest of first year.

I have been on methotrexate for the last 2 and a half years, and have to have monthly blood tests done to make sure this drug doesn’t damage my live.

I had my last flare up before my junior cert this year and was started on steroids by my GP because I couldn’t get an appointment with Dr. Killeen before my exams. When I finally got to see her I had to return a few weeks later to the day ward in Crumlin to have my knees aspirated and injected with steroids. I find these three to four hour journeys to Dublin very tiring.

We desperately need more consultant paediatric rheumatologist in the country so that young people can be seen on time and receive the right treatment. For too long the voices of young people have been ignored, so I’m asking you please to listen to us now and do the right thing.

Please visit www.arthritisireland.ie and sign the petition for the appointment of a paediatric rheumatologist now! Your support will make a difference

Friday, October 2, 2009

How to look ahead all the time whilst living with Rheumatoid Arthritis

When Mary Whelan woke up and couldn’t move her hands, she suspected arthritis. Eight years on, arthritis is a part of her life, but it’s not running it.

Mary Whelan (45) went from running marathons and doing step-aerobics to being helped by husband John to wash her hair and get out of a chair. In 2000, she became will with Rheumatoid Arthritis but, today, she’s back in control of her own life.

“For the first four years, I was very sick, and totally dependant on my husband”, said Mary, mother of four children, William (21), Roisin (20), Niamh (11) and baby Suzanne, who died shortly after birth in 1985. “I had RA all over my body”, she said adding that it took time before she was prescribed an anti-TNF therapy. “Within two weeks of that, I was walking around with very little pain. I still have pain and I wouldn’t be able to pound the roads like I did during the marathons as some of my joints are eroded.”

But through it all – the visits to her GP, the visits to the Rheumatology clinic in St Vincent’s University Hospital, Dublin, the visits to the Rheumatology Rehab Clinic at Our Lady’s Hospice, Harold’s Cross, she remained positive. ”The thing about the medication is that it takes so long to find the right one for you”, said Mary, who lives in Arklow, Co. Wicklow. “It takes up to three months to see the effect of the medication, then the dose is upped and that takes another three months to judge, but in the meantime, you’re getting worse. But, at the same time, I can’t stress enough that there’s life at the end of the tunnel and I always tell people not to give up in the search for the right medication for them”.

Whilst Mary had to give up work after she got RA, her love of art has persisted, and she maintained that interest and her involvement with an art group throughout her arthritis. Today, she designs and makes personalised cards, has published a children’s poetry book and paints watercolours and acrylics of landscapes, seascapes and still life, a far cry from the day in 2000 when she woke up and couldn’t move her hands.

“At my worst, I kept going. When I was taking Niamh to school, I would get up half an hour earlier than usual just to give myself time to get going. Then, we’d set off for school half an hour earlier to give up time. I felt I had to keep going because I had the children. I also felt that I could either sink or swim with the arthritis. I used to say to myself that I could either sit there in solid pain and not move and have everyone waiting on me, or I could get up and get moving and lost some of the stiffness in a few hours.

“At the same time, you have to respect your joints. I always make sure that I take all my medications. You have to follow your rheumatologist’s advice, keep your weight down and exercise. I lost a stone-and-a half and it definitely benefits the joints in my feet and hips. And I go to aqua aerobics so I get all the benefits of exercise without feeling all the work!”

Oh, and she keeps busy, fundraising for Arthritis Ireland, the Jack and Jill Foundation and local charities!

This article was taken from Arthritis Life, Winter 2008. To subscribe to Arthritis Life, click here

Monday, September 28, 2009

Niamh Costello's Story

Hi everyone I haven't been bloggin recently... Niamh has had a tough few weeks. Her knees and a toe have been very sore. We got call from Dr Killeen who has started her on codeine phosphate. We are hoping this will help with pain. She has been on it a week and it is helping with pain. Niamh is just exhausted. Falling asleep in school. Bed at 8pm everynight. She finds swimming exhausting too..We were in hospital for blood test this morning.. Niamh has blood test every 6wks. On my way out we meet a friend who suggested Niamh should try a strict diet of wheat and dairy free...It reminded me of M. Binchy article of 10 things not to say to someone who has arthritis and I chuckled to myself...Life with a child with artritis is very hard on us all. Niamh doesn't look sick so it is hard to explain to people she has a disability..I find it a lonely disease to have as a child . Niamh gets a ray of hope where she is pain free and gets to lead a normal life then with a bang it reminds her she is not a normal child ...Niamh went to visit her great gran aunt yesterday who was 103 and Niamh's joint's were in worse shape then aunty Liza...Niamh was walking slower ...i would love to wrap Niamh up in cotton wool but I know this is the wrong thing to do. She has to learn to cope....

Monday, September 14, 2009

Growing up with Ray

By Kate McKenna

Being diagnosed with rheumatoid arthritis (RA) at age fifteen was surreal. I didn’t understand how it had happened, what was going to happen or what it ment to my life. They told me everything I needed to know but it didn’t make sense. I was in total denial and had deemed myself invincible – I wasn’t going to let this get to me.

I had to start going for naps during and after school – not very cool when you’re a teenager and all your friends are full of life. They were very supportive of me though and I am so grateful to them for getting me through that difficult year.

When I reached sixth year, the RA was so sore that I couldn’t tie my shoe laces, button my shirt or brush my hair. My little sister had to come in every morning to help me get dressed and help put up my hair. It was even sore to walk. I felt like I had been reverted back to a child – with my parents having to cut up my meals for me because I couldn’t use cutlery properly.

Obviously, I had to give up hockey. My mom encouraged me to coach instead, which was very beneficial to me in the long run. It was hard not to be on the team anymore though but I really enjoyed coaching.

There were a few key people during this time that helped me so much. I was going to my GP, Ciara, once a week to get injections – she was so good to me during all this and helped with the psychological side of things as well as the physical. I was very depressed. Between the actual physical pain and the impact it was having on my life, I felt like I was losing the will to live.

I managed to do my leaving cert – I was allowed to take breaks during the exam which was helpful because it was so sore to write at the time. I didn’t expect much but my parents encouraged me to just do it. I passed the exams, but not with very good results. Of course I was disappointed, but very proud that I had done them. I promised myself that when I got better I would go to college and get a degree.

At this stage, I was seeing the late Dr Michael Kelly in Blackrock Clinic. We had developed a good relationship and he was always so nice to me. We used to make eachother laugh – which is nice when you are getting cortisone injections into every joint in your body! He made me think that it was not such a depressing thing and that I could live a normal life – “do whatever you can do”. I’m sorry I never got to tell him just how much he influenced my life before he died.

It has been 12 years since I was diagnosed, which actually seems like a lot when you put it down on paper! Apart from the occasional flare up, I am in good health. I am still taking painkillers and anti-inflammatory tablets every day, as well as injecting Methotrexate and and anti-tnf every week. But it’s just the norm at this stage!

I am working a job I love, working indirectly with children; I am playing hockey and even completed a triathlon recently! I am studying a degree at night and hope someday to work as a clinical psychologist. I have never felt as good.

RA has taught me a lot – it’s taught me you are stronger than you think you are, and even if something is painful, you can get through it. It’s taught me that good friends stick around when you’re in good form and bad. But most of all, it’s taught me that you should always “do what you can do”.



For information on support services available for people affected by Juvenile Arthritis, see the Juvenile Arthritis section of our website: http://www.arthritisireland.ie/news/newsItem.php?id=79

Tuesday, September 8, 2009

Niamh's Story

What a very exciting week.........

1st September
Niamh is getting used to the early morning starts.. When a child has a bad flare up it is very hard on everyone. Niamh has to get up half an hour before Caoimhe to have a warm bath and do her exercises. As she has stopped her naproxen her knees are really getting stiff and painful. I was hoping the meth inj alone would keep arthritis at bay..but it doesn't look like it..We are all so upset because Niamh was doing so well..

2nd September
Niamh is having a good day today and is in great form. We go swimming after school and Niamh is so good at doing her exercises twice a day.

3rd September

How exciting we head to Dublin when Declan gets in from work as Niamh is on television in the morn talking about arthritis. We have to stop every half hour as Niamh needs to get out and stretch her knees. We hardly sleep as we all excited...

4th September

We have an early start 6.30am so Niamh has a long soak in bath does her exercises and off we go... We are delighted to meet John and Sarah from Arthritis Ireland and Niamh was a star...she was dying to talk more about her arthritis ..We head home after breakfast and Niamh gets loads of calls from her friends..Niamh has inj at 4.30pm and heads for a swim

5th September

Niamh has another exciting day u12 camoige team in cahir playing in county final Niamh on panel doesn't get to play but they win so everyone delighted.. We have a bad evening as Niamh in pain she and we spend a while crying together it does I beleive help to get frustration out..I feel so helpless.. I so wish it was me in pain not an inocent 10 yr old...

6th September
Niamh spends Sunday on couch as she in to much pain to do anything..

7th september

Niamh doesn't want to get out of bed as her knees too sore and she gets very upset.. I help her out and lift her into bath with Declan's help. She is very siff today and
we late for school..her friends are waiting to hear all about her television debut.. but they know by Niamh's tears she is having a bad day and they take her bag and hug her..