Coping with Obstacles
Since the age of 16 I was diagnosed with Juvenile Rheumatoid Disease. My mother took me to the local GP to get my index finger on
my right hand looked at as it stayed very swollen for a few weeks. I used to play both basketball and netball inside and outside of school so I automatically thought I had hurt it in some way and it wasn’t healing properly and then telling mum that something was wrong with my finger she then made an appointment. At the first Dr’s
appointment the GP assessed my finger with some poking and prodding befor deciding to send me for blood tests.
When mum and I returned back to the doctor for the results she said to us that the tests came backs saying that I had Juvenile Rheumatoid Arthritis.
I remember the silence in the room and mum and I looking at each other. The doctor then said the swelling will go away on its own and that was pretty much it. Mum and I left the surgery and never really spoke of it again for some time and my finger did get better but then it got worse again and I watched it go back in forth like a yo yo.
Through different stages and outcomes in my life through the next six months, which included me moving out of home and into my boyfriend’s parents home while they were living in Papua New uinea, so I could finish schooling and complete year 12. My mum had decided to move to the other side of town and was going to up root me in my last year of high school and I said that I wasn’t going to change schools in my last year.
It wasn’t before too long my Rheumatoid started to flare up in other areas of my body and I was suffering big time. I knew it was time to visit the GP again and see a specialist to see how to proceed.
I had all the emotions of why me and it’s not fare, I was scared as well as being in a lot of pain and I have never been one to complain, I generally just get on and do things. But I was finding this tough.
I didn’t have the support of my family nor my friends as my friends where all my age and they didn’t understand what Arthritis was except it’s something that their Grandma has and I didn’t tell most of
them. It was the support of my boyfriend who I ended up marring and am still married to today that helped me and stood by me. If you have at least just one person to stand by you it makes the world of difference.
Some days I was unable to get up for school and I would lay in bed all day, I dreaded the walk to the train station and then walking to school and around school up and down stairs with still keeping up appearances and a care free attitude in front of my peers. They would joke and I would laugh at the fact I haven’t been to school for two days in a row. I was battling to catch up with studies and copying friend’s notes left right and centre.
Meanwhile I was having specialist appointments left right and centre from blood tests every month to monitor the medication I was put on which they would chop and change determining on my blood levels, I
was getting my knees and elbow aspirated because they would fill up with copious amounts of fluid which he would measure in cm’s each time, I was at the hospital getting wrist splints made to help make me more comfortable. I was even doing hydrotherapy and physiotherapy for my knees, wrists and elbow. I began to learn what was needed and how my body reacted to different methods and treatments. I was eventually able to manage a lot of it on my own. The costs were also taking it’s tole with no support from my parents and my boyfriend at the time was an apprentice electrician we were very limited on funds. I then had to seek government assistance and disability support to get me through the rest of school costs, living out of home and the disease. I have been off of any government assistance scince I began working fulltime which was about a year after I finished school.
Rheumatoid Patient Foundation
Rheumatoid Arthritis (RA) is now known as Rheumatoid Disease.
It was a complete life style change and I was annoyed I was missing out on finishing being a teenager with going out to clubs more often, playing sport and just doing normal things that wasn’t physically
challenging for me. At several points and for different longevities in my life I couldn’t get in and out of a bath tub, or off of a toilet and
even wiping myself, if you can imagine sitting on a toilet you need to lower yourself up and down which involves your knees then if your knees are sore you will use your wrists and hands to help haul yourself up but what if they are sore and swollen too, they become so sore and swollen you can’t even rotate your joints without pain so then that’s where the problem of wiping yourself comes in. Your mobility comes to a standstill and with acute pain you sleep a lot then set in depression. I have never been diagnosed with depression but I don’t doubt at several points in my life I’ve had bouts of it and
gotten through it learned and readjusted.
I think I’m forever reinventing myself to be able to cope with different facets of my life. I think anyone who doesn’t think they never have to reinvent themselves in their own life time get stuck and probably
stay in a depression and wonder why and watch the world go by them not understanding why.
I tried to work a couple of part time jobs in between on a Saturday of the weekend, one was in a friend’s parents real estate agency, answering phones and typing up documents and paper work for them,
thankfully I did typing at school in my younger years and I grew
up in my mum’s hair salon business so I had a good phone manner, etiquette and customer relations at a young age.
Through the years I’ve ended up having to have two arthroscopies on my right knee and now I have an artificial replacement. I have
probably left getting the replacement for too long as the over compensation on my other joints have also taken it’s tole and the
specialist say’s I will have to have a hip replacement on the same side. Also I have to get another artificial replacement on my left knee and right elbow. My husband jokes saying I’m going to be Bionic Woman by the time they have finished with me and he won’t be far wrong.
These days I have a different take on it all within myself and I don’t wonder why me. I have a lot of empathy for people who help themselves and little patience for those who don’t. I
understand sometimes people can’t see or understand what’s right in front of them and they don’t appreciate what they have again
it’s of no fault of their own it’s just the way their life has developed them and build their character. But it still comes back to a point as I also believe you can’t blame anyone but yourself in your own life’s choices you always have a choice and more so when you become an adult you make and steer your own path, your own destiny where you’re at in this point in time and the people around you are of your own life choices and doings. So if you’re not happy you need to man
up by making a plan and take little steps and go on forward.
I don’t blame or judge people for why they are who they are as we all have our own life story to tell and we are still all living and telling it. Only as I’ve gotten older I’ve also been more comfortable to tell people that I have Rheumatoid Disease as it shows some days more than others in the way I walk and carry myself. It is degrading and very in your face self conscious so you have to remain strong on so many levels. Even when you tell people that you have the disease they still don’t fully understand what it entails and how much
one goes through.