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.

Pain and Juvenile Arthritis.

It's in our nature to just give out advice, even if we don't fully understand what the other person is living through. 

Throughout my life I've been given plenty of non professional advice from people just trying to help. I get it, you can't stand to see Little Sarah in pain, well guess what. There's nothing anyone can do about it, even myself. 

Every child living with Juvenile Arthritis is different. 

In the weekly #SupportMondays poll in the Australian First Online Support Group run by Kids Arthritis Australia, I asked parents and careers what was the best way to reduce their child's pain.

Number one answer. Medication.

Medication in 2016 is strong, toxic stuff, but you know most of the time it gives the relieve the body so badly needs. It might be overwhelming for the parent to hear all the side effects that come with the medication, but recent research has shown that with early strong medicaiton intervention the child's JIA could be better off later in life.

Second answer. Heat/Cold Packs.

Whether it's winter or summer a child living with Arthritis body needs to be at a good temperature (just like anyone elses). With the interaction of JIA and medication this can be a problem. Hot packs are also good for pain during winter and cold packs are great for sudden joint swelling.

Third answer. Good nutrition and exercise.

I know as an adult eating right and exercising can be hard, but for a child living with Arthritis sometimes and they might not even know it, can get medication cravings (yes another Sarah word).
When I was having Actemra, the craving I received after the infusion was salty foods and it became a tradition that I would cut up fresh potatoes and deep fry them and eat them with dinner that day. It just happened and I don't know why. Exercise can also be hard due to pain and stiffness, but with the help of your local physiotherapist this can be made easier.
Excess weight is bad for anyone, but if you live with Arthritis and you become over weight you place more stress on your already stressed out joints which creates more pain.

What other ways do you reduce pain?
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Hospital Torment

Every year since birth to age 13 years I'd have to deal with the cold hard fact that I would have to have an operation of some sort, but would never know exactly what.

The operation would always happen around the beginning of Spring and my mother could always tell it was coming. I'd always feel fatigued during the day and have painful, swollen joints that would never go away. In the beginning I was too young to recognise what my body was doing to me, but as I got older it became a bigger and more annoying problem.

Through beginning Australia's First organisation, Kids Arthritis I have found that this also happens to other children all around the world.

Eventually the swelling would make my joints so stiff, swollen and painful that the only way to remove the problem temporarily was to have an operation. 

I hated this so much, more than anyone could ever imagine. My horrible childhood memories are all from these times in hospital. Being forced by medical professionals to do certain things for my treatment and would hold me down and make the pain worse if I wouldn't do so. 

This kind of treatment lead me to have a huge fear of the dreaded gas mask and instead would be first be sedated with a injection to feel 'relaxed' (it never worked). I then had a final injection to put me to sleep for the operation. 

I can remember many times when this 'relaxed' injection didn't work and I had to deal with what the medical professional would do next, as they thought the injection worked. 

Once the operation was over, I would wake up with Tweety, Arthur the Arthritis Bear and my mother by my side, and would full in and out of sleep of many hours to come. 

I remember the first thing I would do once I'd woken up for the first time, would be to feel where the intravenous was in my body. Sometimes it was in my arms, others in my tiny Arthritis hands. I would then feel what the doctors had done during the operation. What arms, legs, wrists, elbows, etc were in plaster and if there was anything inserted into my nose or mouth for food, water or air. I'd then peacefully drift back to sleep once I knew what was going on. 

Remember this really happens to Children who live with Arthritis. This happened every year and every time the procedure was different, but what stayed the same was that the Arthritis had made it happen.

The last time I had an operation was a couple of years ago and it was to remove swelling, stiffness and a bursa from my left elbow at the REPAT Hospital. 

Once you've been grown up living like this, you don't expect anything different and this is a sad thing. To think that for the rest of my life I have to live with this disease that controls how my body feels and acts. Leading to operations and doctors appointments just like the ones written above.

No child should ever have to live like this.

www.kidsarthritis.org 

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.