Introducing Rebecca, her Family and JIA

In this post, Rebecca shares the story of her daughter, who has juvenile idiopathic arthritis (JIA). I learned a lot from this post, and I hope you will learn something too.

 

When my daughter first received a diagnosis of juvenile idiopathic arthritis (JIA) I wrote a piece on our own blog entitled ‘Even 2 year olds can get arthritis’ (http://thebeesleybuzz.blogspot.co.uk/2015/03/even-2-year-olds-can-get-arthritis.html)
You see, even though I suffered from arthritis as a child (mine started at age 10) I still found myself shocked and surprised that my daughter at such a young age of 2 could possibly have arthritis.
When people asked me why I used crutches and I told them I had arthritis, I hated the usual response I would get from them. Usually something along the lines of ‘my granny/grandad / elderly neighbour has that’.
It was (and still is) considered to be an old persons disease and yet arthritis can affect people of any age.
My daughter was lucky. The doctors recognised that it could be JIA and within 3 months she had been referred to the experts at Great Ormond Street and received a formal diagnosis. For many diagnosis takes a lot longer. In my own case it was over a year. During this time the body is attacking itself (rheumatoid arthritis is an autoimmune disorder) and the affected joint(s) are becoming permanently damaged.
Between January and March of last year, my daughter, Miss T, was in a huge amount of pain. She had multiple swollen joints. She was unable to walk and would crawl or shuffle around the house. She was prescribed high dose pain killers which enabled her to begin to walk again.
After her formal diagnosis from Great Ormond Street she Began on methotrexate treatment – a disease modifying anti-rheumatic drug (also used in chemotherapy) that can help prevent the arthritis from causing joint damage and reduce the inflammation and pain.
9 months on and most of the affected joints are looking normal. It is just the left foot which was the worst affected that still has some swelling and can be very painful.
As a result Miss T uses a wheelchair on an occasional basis (for example she cannot walk long distances)
The plan is that with ongoing physio and continuation of the methotrexate injections that she will be pain-free enough to manage without it. But for now we’ve had to experience the steep learning curve that comes with finding your child needing a wheelchair.
When faced with sympathetic stares or those who say how awful it is that she needs weekly injections of methotrexate with all the side effects that can go with it…I just want to tell them that we actually have so much to be thankful for….
That the pain is getting under control
That there are drugs that prevent the joint damage (something that wasn’t available to me as a youngster)
That there is very little that Miss T misses out on. Whilst we’ve had to make some changes to plans, on the whole we encourage her to join in with as much as she can.
That we’ve found a wheelchair that meets her needs and our needs (it took several adjustments to get it right so that it was the right fit for her as well as being comfortable enough for me to me able to push given my own arthritis but we got there in the end)
That her doctors were aware of JIA and made a speedy referral to the rheumatologist.
That she is under the care of world experts in JIA and they are hopeful of a bright future for her.
I would be happy to hear from anyone else who has a young child with arthritis. Whether you just starting out on the journey with a new JIA diagnosis or whether you are some way down the road with treatment. I can be found on twitter at @TheBeesleyBuzz on facebook at facebook.com/thebeesleybuzz and our family blog is http://thebeesleybuzz.blogspot.co.uk

Invisible

Here’s the next entry for our Poetry Competition in association with The Student Wordsmith:

Invisible
By Anwara Tarafdar

At some point in the future I most definitely
will have to get a new vehicle.
That is the nature of my illness. It may rob
me of my ability to walk. Not completely,
But devastating, nevertheless. Enough
To steal my independence if I let it.
My shiny new vehicle will have to be
The latest state of the art model.
After all, it will be the first and
possibly, the last thing people see.
They may not even see me.
The wheels would have to resemble
the alloys of an Audi A6.
The foot rests would have to be strong,
Sturdy like Doc Marten boots.
The seat would have to be soft
yet durable burgundy leather
And heated. Oh it must
Be heated! My bottom can’t
tolerate the cold weather.
I will not cover my lap with
a blanket like an invalid,
But wear thermal long johns
Beneath my leather pants
and thermal socks on my feet
inside my knee high boots.
People must not see
my new mode of transport
and only see a wheelchair!
I want it to be a vehicle they
Envy. When their weary legs complain
and when their feet are in pain
from heels too high. To be honest,
I really don’t care what they see or feel
As long as it isn’t pity or sympathy.
All I would truly want is respect,
Understanding and most of all
I want people to still see me. To look
at me, not shy away
or feel so much pity
that they cannot meet my eyes.
I do not want to be the invisible woman
in the highly visible modern
piece of technology otherwise
known as a wheelchair.

Lizzie’s Notes on Pride

I must begin this piece with a question. What would your response be when asked, much in the same vein as Heather Small posed this question in her famous and undeniably catchy tune, what in your life you are proud of? Or indeed as Heather put it: “What have you done today, to make you feel proud?”

At first this seems a simple question, until one stops to think about it. Personally, I cannot bring to mind many occasions on which I can honestly say I have felt proud of myself. That being said I do recall many a time I have been pleased about something. To me, at least, there is a difference. My hope is that in writing this I will be able to show examples of both instances when I have merely been pleased, and some of those times which might indeed have warranted the word proud to describe the particular pleasure I experienced. Thereby, I may perhaps be able to illustrate the difference between the two. Here goes nothing.

It seems sensible to start by delving in my early life to find examples. I remember being pleased, when at the age of eight I agreed to have surgery which was designed to ensure that I would be able to have better mobility as I grew older. At that young age of course, I had not the vaguest notion what the decision would mean for me. At that stage, then, I knew only that my parents were very proud that I had ‘been brave’ and agreed, and thus I was pleased in turn. I don’t think, though, that I could have said I was proud.

The earliest occasion I can remember feeling proud was on a much more trivial occasion. I was at a party when I was perhaps nine or ten, which had been arranged by an organisation called Red Caps. We, that is, my sister and, I were involved primarily because my mother was on the Red Caps committee. At this party then, I was involved in a game of musical chairs. The, for want of a better word, ringmaster would stop the music and shout something like, ‘Find someone wearing a watch’, and we children would then scramble to find someone fitting that description and drag them to a chair set up in the middle of the room before they were all taken. I remember at one point with four of us left in the game and two available chairs, the music stopped and we were asked to find a man with a beard. The other three people, dutifully went on a frantic search, but I was proud to outfox them by realising that a man standing only feet from me – the ringmaster himself- sported both a beard and a rather marvellous moustache. He consequently found himself dragged to a chair, me grinning proud to have outsmarted the others.

Some years later, I gave a speech regarding disability and the breaking of barriers to members of the European Parliament, at a conference I attended in my capacity as a Student councillor. I remember feeling proud that I had managed to get through it without ending up in a gibbering mess. I also recall being immensely pleased with the £50 I was given for my presentation, which at fifteen, made me richer than Midas.

At a similar event a year later I remember feeling very proud of my sister, Lucy, when she helped me to give a talk on disability to the Red Cross.

I was pleased when I got my GCSE results, but mainly I was relieved that I did not have to retake my maths exam, having achieved the satisfactory grade C. The same can be said when I obtained my A-levels. I suppose it may have been upgraded to pride when I was awarded my degree. I hope in the near future to be proud when I manage to pass my driving test.

What, I hear you ask, makes you most proud now? Well, if I can find a way to express this without it sounding soppy and nauseating, I am most proud these days, (always excepting the strange but great pride I feel whenever I manage to answer more than ten questions on University Challenge) is the pride I experience when I know that I have helped a friend, given advice, or had some part in making them smile.

This has been Lizzie, with Notes on Pride. Happy New Year everyone, may you all find something or someone you can be proud of in 2016.