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. 

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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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.

This week Sarah is dairy intolerant.

This weeks post gets its name from Rhys from RawCutAU. This guy does so much for Kids living with Arthritis I swear he gets sick of my voice because of all the editing he does for the videos.

For the last couple of months when I have had my late morning dose of caffeine, all thanks to the reoccurring Lupus that just doesn't want to give me a break. I have felt quite sick afterwards and sometimes it wouldn't stay down, rather come back up again.

When you have Arthritis doctors sometimes can not give you an answer. You can spend hours having tests done to get back the results you knew you were going to get. After a life of wasting hours doing this, I now sometimes try to find out the matter before going to see a doctor.

On this occasion I knew that milk upset me but wasn't sure whether all dairy would have the same effect, so when my friends went out for pizza. I joined them to see how the dairy in pizza would effect me. Same reaction as the milk but this time it actually stayed inside me.
I tried different dairy and came to the conclusion that the Arthritis has changed my immune system once again and now Soy Milk is my best friend. 

As I do at Kids Arthritis we are open and share with one another what is going on in our lives. 
It was a Wednesday and it was filming day for #Pranks4KidsArthritis and Rhys was pouring coffees as he usually does. Before it came to mine I had to interrupt him and pour soy milk into mine rather than dairy milk. I explained to him the story I have just told you and this is how the title for this weeks post came about. 

Having Arthritis doesn't just effect your joints but sometimes your internal organs as well. All Arthritis medications are designed to alter the child's body to help it keep their disease under control. If you ever do experience any unusual feelings even if you don't have Arthritis, please speak with a doctor. I have had Arthritis long enough that if something isn't right, I will try and fix it within reason and then head to the doctor, because if I didn't I should live in a hospital.

So to Rhys who not only volunteers his time support Children living with Arthritis but to a dear friend who is a listening ear and a laughing companion, thank you for all that you do. You really are someone special.

Until next time,

Keep smiling as you never know who's day you'll brighten. 

What is Lupus?

The year was 2013 and it was my usual Rheumy, or Arthritis doctor to those who don't know the Arthritis lingo. It starts with a blood test that usually takes more than half an hour. This is because my veins are quite thin due to the thousands of times they have been broken because of infusions, operations and blood tests.

From here it's the wait to see the Rheumy and into her office I go.

Now I am referring to this particular appointment as this was when I was told I had an extra strand in my body that is known as Lupus in my case.

Up to this point I had experienced times of getting lost while out driving, feeling more tired than usual, random vomiting throughout the day and a rash all over my body that was made worse through sunlight. Now if you have any of these symptoms please do not assume that it's Lupus, please go see you local doctor.

This moment that the Rheumy informed me of yet another autoimmune disease was attacking my body, I did feel just a bit frustrated with the result but at the same time there was nothing I could do to fix it.

Now for those who don't know what Lupus is, I found an easy explanation on MedicalNewsToday.

Lupus is a chronic autoimmune disease in which the immune system produces antibodies to cells within the body leading to widespread inflammation and tissue damage.

Any part of the body can be affected by lupus as it has an array of clinical manifestations affecting the skin, joints, brain, lungs, kidneys, blood vessels and other internal organs.

When I am diagnosed with a new condition, which happens quite a lot these days. I ask as many questions as possible to the Rheumy and she refers me onto the internet for more information. Some of my favourite facts (sarcasm) about Lupus that I found online are:

- Lupus is an autoimmune disease that can be mild or life threatening.

- More than 90% of Lupus suffers are Women.

- Staying out of the sun is perhaps the most important thing to do.

What does make me furious is that my Lupus may have been prevented as it's believed to be medical induced. Which means the medication I may have once taken or take now have caused Lupus. 

Even though it's another disease I now have to live with everyday, I do have a life and this life may be short for me, but I am determined to live everyday to the full and to live it supporting other children like me with Arthritis.

Until next time.

Keep smiling as you never know who's day you'll brighten.