Winter and Juvenile Arthritis

“It’s cold.”

Is the usual beginning to conversations during winter, but a side to Juvenile Arthritis that many don’t know is how this weather effects our condition.

There are many different types of research done into weather and Arthritis. You only need to jump online to see, but there’s not much there in relation to Juvenile Arthritis and the weather. So I decided to undertake my own research through Kids Arthritis to see if I was the only one being effected this way.

“How does the weather affect your Juvenile Arthritis, Sarah?”

Is a question I’m asked when speaking at community groups or conferences about Juvenile Arthritis. The answer can sometimes surprise people. The weather plays a huge part in my condition. Each year until my 13^th birthday I was admitted to hospital for surgery in September/October due to inflammation and pain in my joints that needed to be removed. The fact that it was the same time of year every year made me always wonder, 

“I’m sure I am not the only one.”

Turns out I’m not and through the research, I undertook through Kids Arthritis, I found that a high percentage of those I spoke with had the same issue.

The beginning of Winter is when the pain is most severe during Winter. Swelling appears and your reliance on medication to get through the day becomes more prominent. Once again, this isn’t just something that happens to me, it’s happening to a high percentage of children living with Juvenile Arthritis in Australia.

 If you ever meet a child or adult living with Juvenile Arthritis rather than asking them,

“How are you?”

Ask, “Do you have any pain today?”

This shows to us that you do care and want to know how we’re really feeling.

Flowers for Charity

We all know a person that loves their garden, they may even be you, but my mother loves her garden for a special reason.

As a child I remember each year she’d take up more and more room in our backyard to grow more flowers which for 21 years she has grown, bunched and sold on the Echunga Main Street for Juvenile Arthritis. She does this between ANZAC and Mother’s Day. During this there are many community members who come together and show their support not only for the work my mother is doing, but for the 1 in 1000 Children in Australia living with Juvenile Arthritis.

I remember one year spending part of this time in hospital for Juvenile Arthritis related surgeries, but it didn’t stop the community passion to help support Children living with Arthritis. While my mother spent time in hospital with me, the volunteers were at our home creating bunches of flowers, as they knew that I wasn’t the only one living like this and by them helping more people would learn about the condition.

Another story is about the many times throughout the years when it would rain just before Mother’s Day. Now my mother spends all year cutting, watering and pouring a whole heap of love into these flowers and when the week before Mother’s Day the rain comes and ruins her work, it’s a hard thing to watch.

I need to mention these aren’t any flowers, they’re the special Mother’s Day flower; Chrysanthemums. Their unique smell and bright colours they’re the perfect flower to give a special lady or person. If you need a reason to grab someone a gift or add some colour to your home, head through Echunga between ANZAC and Mother’s Day to show your support for the 1 in 1000 Children in Australia living with Juvenile Arthritis.

Little Red Dots

It's not the Juvenile Arthritis that impacts you the most, it's the side effects.

I've had and still live with many different side effects due to my Juvenile Arthritis.

Minor things like hair loss to extreme fatigue and Lupus, but the one everyone sees the most. Those little red dots.

What are those little things?

Well for starters they're far more itchier than mosquito bites and take 10 times longer to heal.

They get worse before they become better and are in the most annoying places. 

Two years ago I had a sample of one of these little dots taken. It was the most painful thing I'd had done to my skin awake. The result from that was medication side effect.

If you've read my previous posts you would know the only medication that can give me the relief I need currently is Meloxicam. A medication that's eating my stomach lining, but means I can walk. Factors like spending time in the sun (the tiniest amount), covering up my skin for extended periods of time (in winter) makes them worse. There's no way to get rid of them and covering them up makes it worse. 

There not only over my arms and back, but the part everyone looks everyday. FACE. 

With the power of make up the ones that aren't oozing or sticking out like Mount Everest can be covered up. As for those ones.. Cleaning my face twice a day, keeping my hands away while there's no make up on and drinking plenty of water, seems to do the trick. 

Living with Juvenile Arthritis is much more than just painful joints and taking medications. It's dealing with people judging you about something on your skin that you have no control over. 

Driving with Uveitis

Living with severe Juvenile Arthritis has it's problems.

Never ending pain, stiffness that just doesn't go away, constant reliant on medication, I could go on..

Driving is one of those things that most people take for granted. 

Need more milk or bread? Just jump in the car and drive to the shops.

Got to pick up your friends from the work function? Just jump in the car and pick them up.

In the above two scenarios I've mentioned two of the problems I have l have living with Juvenile Arthritis.

You can never just "jump in the car' to get something. If having Juvenile Arthritis was that easy you'd all want it. Especially at night time it's the hardest. 

Driving to and from my weekly radio show is a problem I have especially during the winter months, as by the end of the show it's pitch black!

Living in a small country town doesn't make it any easier due to the lack of public transport, sorry, no public transport at hours that anyone would want to use it. 

I'm very lucky to have some sight in my left eye and each time I drive I'm grateful for the privilege.

Joint Swelling and Juvenile Arthritis

People who don't have Juvenile Arthritis find it hard to understand what it is actually like having swollen joints. 

I am not only talking about the actually joint but what it does to my body.

To put it simply, it screws everything up.

Living with a hidden disease is hard as I've said many times before but what makes it harder is that you are trying hard and volunteering my life to supporting children living with Arthritis and my joints just keep getting in the way.

This is my third month of elbow swelling and this isn't unusual at all. What is unusual is that it's only happening in one joint. This is not normal but I'm very happy that this is the case currently.

When a joint in mu body swells up it first creates stiffness. Due to this stiffness that I have in my elbow currently I am unable to brush by hair or even wash my hair without funny head movements that lucky I'm the only one that can see. 

 With that stiffness becomes horrible pain. This pain isn't the sort of pain that you get with a paper cut or a broken bone, it's the sort of pain that NEVER LEAVES YOU ALONE!

It's always there and even with pain killers it still just doesn't leave!

If these two things stick around long enough along come the tiredness. My body at this stage is usually fighting against itself even more and getting really confused and my body just has enough and wants me to sleep ALL THE TIME.

With this tiredness like normal tiredness, you become "cranky" but what happens to me when that happens?

LUPUS! Yes the wonder other autoimmune disease that I have. 

Lupus kicks in and that is when it's very hard to control. (Read my other blog to learn more about my Lupus)

When I was a young child and living with swollen joints for most of the year I didn't suffer with Lupus as well. This is why being 22 years old and getting a swollen joint is worse, but I will always keep smiling and supporting children living with Arthritis.

Until next time,

Keep smiling as you never know whos day you'll brighten.

Why does my Arthritis hurt in different weather?

I have recently stumbled across my new favourite science channel SciShow. 

Now before we go any further I do enjoy watching the occasional fluffy bunny eating a carrot video like the one below. www.youtube.com/watch?v=uDT4bHBtK4g

But if I'm really going to spend time trolling through YouTube I would rather learn something, and that's how I stumbled across these guys. Their videos are not only informative but the questions are asked by real people from all over the world. 

One of their videos was of most interest to me as they were speaking about a problem I live with daily. The changing weather and my Arthritis. You can watch it here: www.youtube.com/watch?v=86L4oRORREY

For years now I've known that the changing weather from hot to cold has played a part in why some days I can't move because of pain and others I'm free as a bird (sort of). I would have to be admitted to hospital during these cooler months for operations to remove Arthritis swelling and other procedures.

The video explains that our body genes can change expression or in other words turn on and off depending on the season. 

Researches in the UK and Germany studied over 16,000 peoples genomes, using blood and fat samples collected at different times throughout the year. Now if you didn't know there are different fats, proteins and other gooey stuff in our bodies that change throughout the year. This meant that 5,000 genes out of 23,000 genes were more active during cooler weather.

To put this all into practice they tried the study on Mice by using their ARNTL genomes, which suppresses inflammation. It turned out that during the winter months it was not suppressed, which meant that there was more active Arthritis during that time. 

If you want to know more about why your Arthritis may be different during different seasons please speak with your local doctor or Rheumy.

Needless to say I learnt a lot about my own disease in this video and it's great to know that someone out there is trying to find a cure for Arthritis.

Until next week,

Keep smiling as you never know whos day you'll brighten.