About
Living with “Arthur” is a blog that I decided to create a year after my 12 year old daughter was diagnosed with JIA.
When she was first diagnosed it was a very scray time not only for my daughter but also for us, her family, her mum, her dad, her siblings and cousins & friends. They found it hard to understand why it is that she cannot do all the things that she wanted to do… why cant she play the same games with us etc.
I was sick of the blame game, being told continuously that it was my fault she had JIA, I must have done something wrong when she was a baby, how I should have noticed the signs sooner.. There was just too much blame being placed down on my shoulders.
So…..I went looking online for ways to be able to answer their questions and to try to ease their confusion and this blog really is just a guide to some of the things I have found so far.
I found that reading “Meet Arthur” allowed family members and friends to atleast get some sort of understanding of what it is my daughter is goinng through.
Although the blame game still plays a large part in our lives… I know in my heart that it was nothing I did wrong or anything like that… that these things sometimes just happen.
As our journey continues I will be sure to keep the blog updated in the hope that it may help someone else along the way.
1.
Brooke | June 3, 2010 at 4:13 am
I recently enjoyed reading about your family’s struggles with juvenile arthritis and your approach to educating your readers about this debilitating disease.
As a member of the Marketing Committee for the Southeastern Pennsylvania Chapter of the Arthritis Foundation, I wanted to make you aware of, and to see if you might possibly be joining us for the National JA Conference in Philadelphia, Pennsylvania July 29 – August 1, 2010.
One of the Foundation’s signature outreach and advocacy activities, this year’s theme is: “Life, Liberty & The Pursuit of Happiness.” The conference features educational programs, forums, and fun for the whole family – and the opportunity to meet other families who are facing similar challenges.
For more information about the conference, visit: http://www.arthritis.org/2010-ja-conference.php
2.
Rayanne | October 25, 2010 at 7:01 pm
it was a tough time, and we have our ups n downs, but hope is what we held onto during these years. LOVE.
your daughter x <3 love u mum xxxx
3.
Lauretta | May 5, 2011 at 12:51 am
Hi my name’s Lauretta. Your name isn’t listed in your blog, but I’ve read that you are a parent of a child living with JIA. Well done for blogging about your daughter’s experiences in living with this erratic and painful condition! I’m sorry that your daughter was diagnosed at 12 – I was actually diagnosed with it at 12 too and now that I am 19 and have had two hip replacements within the past two years, I decided to blog about my journey too. My form is the Systemic kind (Systemic Onset of JIA). I just quickly skimmed through your site and there is some wonderful, descriptive information about the different forms of Arthritis, etc. This is great and I think the more people who have access to this info, the better awareness we can acheive! I too, have heard of young children refering to their Arthritis as “Arthur.” It is amazing to be able to even acknowledge that Arthritis is a part of you at such a young age, by naming it, and I think it shows incredible resilience. You can visit my blog at: http://kidsgetarthritistoo.wordpress.com/about-author/ where it is a working progress, but I have started detailing my story. I hope you keep blogging and that you receive support or find it therapeutic in some way. I look forward to reading more of your posts.
4.
livingwitharthur | July 13, 2011 at 8:19 pm
Hi Lauretta, thank you for commenting and if you dont mind I would like to list your blog on mine. I have not updated this blog for such a long time and really I should as so much has happened since I last updated. Maybe too now that I have the information up there I should start and write more of the experiences my daughter is going through.
By the way my name is Leanne, I didnt put it on my blog probably just because I didnt want to make it too personal.
When I get some time on my hands I would love to read your blog and I will probably pass it onto my daughter as well as unfortunatly she does not know anyone else who has JIA.
Once again thank you for taking the time to comment and please accept my appologies in the lateness of my reply.
I pray for a cure for all those who suffer with JIA..
5.
Lauretta | July 15, 2011 at 11:06 pm
Hi Leanne,
No worries! As a uni student, I rarely squeeze in time to post as regularly as I’d like to, so I definitely understand where you’re coming from there. I too, have many other key events regarding my journey with this disease, that I have yet to document onto my blog.
And as a student who has grown up with technology and gadgets, I certainly understand the need to not disclose too much personal info over the internet.
That’s really sad for me to hear, that your daughter doesn’t know anyone else with JIA. May I ask what form of Arthritis your daughter has? My family and I sought out an Arthritis community in our state (Victoria) with which to connect to, because it certainly can be quite isolating to everyone involved.
Are you able to ask your doctor (or rheumatologist) if they can suggest support groups? With Arthritis Vic, my family and I were able to socialise with other families who were going through the same experiences. It allowed parents to talk with eachother and kids (and sometimes their siblings) to socialise with other JIA sufferers. I think it provided a huge stepping stone, in helping me and my family to cope with the changes of chronic illness, especially at such a young age (I was 12 when diagnosed).
That’s ok and thankyou for your message. I also hope a cure comes out soon, if not to prevent so many other young children and families from going through such a challenging illness.
Take care,
Lauretta
6.
livingwitharthur | July 20, 2011 at 4:13 pm
Hi Lauretta,
My daughter was diagnosed with polyarticular juvenile idiopathic arthritis. I am really looking forward to reading ur upcoming blog about the positives of living with arthritis, its one thing I have not ever read about.
It is funny that I mentioned she didnt know anyone, she was actually apporached by a girl in her school who is currently undergoing tests for JIA. I have told my daughter to have a read thru ur blog.
The only issue we probably have with getting involved in other groups is that to be perfectly honest we are not a very social community that I come from and to seek help from outside the community is frowned upon.
My daughter also finds it very difficult to talk about and to associate with other people, she has always been a very withdrawn girl.
I do hope u keep reading and I and my daughter will do the same with your blog.
Again thank you for stopping by, it really is appreciated