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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:

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..