Saturday, May 16, 2015

Art of Awareness Blog Hop . . . Juvenile Arthritis

"The whole idea of compassion is based on a keen
awareness of the interdependence of all these
living beings, which are all part of one another,
all involved in one another."
-Thomas Merton

I first want to start out by saying thank you to our hostess, Lori of Pretty Things,
for this great idea, and to bead artist, Heather Millican of Swoondimples. for her bead beans
that you will see as a common denominator in everyone's Art Awareness piece today.

My hope is that this awareness blog hop will bring a new sense of compassion to all of us.
Because everyone is fighting something and we never know what life will throw at us, or where and how hard we will land (or fall). Because it doesn't just effect us personally, it ultimately effects us all.

Hi, my name is Kim, and I am a parent of a child with Juvenile Arthritis.
Approximately 300,000 children in the U.S. as young as infants to teens have been diagnosed with some type of juvenile arthritis. There are six different sub-types, 5 of those being autoimmune diseases, with the last one considered an auto-inflammatory disease, and the one my son has.

In March of 2103 my son was diagnosed at the age of 15 with a rare and serious form of juvenile
arthritis called Systemic Onset Juvenile Idiopathic Arthritis or SO JIA, sometimes referred to as Still's Disease. Out of the 300,000 kids who have arthritis, only 10% get this type.

What is SO JIA?

It is a systemic inflammatory disease that can affect their organs and tissues as well as their joints. It is often accompanied by high fevers and a salmon-colored rash at the onset of illness and has the potential to be life-threatening.

Here in the United States there are currently less than 250 pediatric rheumatologists and 90% are
clustered among the large cities. There are 11 states that have no board-certified practicing pediatric
rheumatologists, 19 with three or less, and the remaining have 4 or more. Some people have to travel
long distances on a weekly or monthly basis just to get treatment.

My son wakes up with stiffness and pain on most days. He is tired more often, and everyday small motor tasks like buttoning a shirt can sometimes be challenging. Juvenile arthritis is not "just arthritis." It's MRI's and CT scans and x-rays. It's hospitalization for an infection. It's emergency room visits, and irreversible damage to joints. Sometimes it's having to give up things you used to do. It's hours and hours of infusions and blood draws, lost time from school and make up work. It's serious side effects from those infusions including the risk of cancer. It's the 5 stages of grief that you go through as you see your child lose his "old" life in exchange for this new one. It is a thief of childhood and adolescence and it impacts the entire family.

I ran out of daylight as I got this bracelet done last minute so I used my cell phone to save time. And I can't believe I forgot to take a picture of the back of the bead which has a ribbon imprinted on it. This week has been a train wreck of a week between the 8" of rain in one night and flooding that nearly kept us from getting to our infusion (except that the one on ramp I needed to take was the only one not under water), waking up to a completely defrosted freezer and refrigerator full of food (it was the converter), the internet going out in the middle of writing this and random power outages. And sick caterpillars and dead butterflies ( I raise them.) So these are what they are, the color is slightly off. I promise it all blends in person. The dangle flower beads are a pretty gray-blue and are opalescent which doesn't translate in the photo either.

I chose the word "reach", which is my word for the year, to signify reaching for hope, and faith and for a cure. And because despite all these challenges I want him to still be able to reach for the stars and touch everything in between. (more on my word reach here)

In a perfect world I would have gotten this post done a month ago, but nearly a month ago our world was turned upside down once again. And rather than write a novel (I know, this is probably already borderline) , I do hope you will click here as this link has an overview of what the first few months were like when he was first diagnosed and is part of a bigger story. It will help you understand the gigantic peaks and valleys of this disease that are always ongoing. No good news goes uncelebrated at our house.

So fast forward, back to nearly the first of this year. He has continued to have flares, which include the systemic rash that comes and goes and is a sign of something going on. And it's accompanied by more pain and stiffness and intermittent fatigue. And my mom sense says in the last few months something just seems off. I've noticed the joints in his hands are looking bigger and swollen and I inquire about having x-rays done (that they compared to his baseline ones from two years ago). There is now permanent and irreversible erosion in his hands, primarily his left. And they are adding methotrexate, a chemo drug, to prevent further damage to his hands. He is only 17, he will need those later in life. And here's the thing, we have to do the injections at home, weekly...sigh.

Yes, kids get arthritis too and I often hear, but he doesn't look sick. And that's because his body
is waging war against itself on the inside. He won't outgrow it and there is no cure, but we do pray for remission or better yet a miracle. 

To date, my son is one of the strongest and bravest people I know.

Love, Kim


Tamar SB said...

That is so beautiful, Kim! So sorry things have been tough - hang in there!!!

Unknown said...

Awareness is the best weapon! Thank you for sharing your family's struggle. Give yourself some credit too my are one strong cookie, and I hope u remember that!

chasing the sun said...

I love your post! I hate reading that your son has some permanent damage to the joints of his hand and that you guys have to deal with the injectable Methotrexate though...((((Hugs))))
BTW, your cell phone pics rock! I absolutely love the bracelet , I know it is definitely OOAK..With that said, I wonder if you take commissions? I would love for you to make similar bracelets with this word for my sister and I..

Sandra said...

Such a touching post, Kim. Your son is one brave and wonderful boy. New medical studies are being made all the time and, who knows? Something could turn up that can manage your son's condition and alleviate his discomfort and pain and slow down or even stop the condition. I hope so with all my heart.

Sandra said...
This comment has been removed by the author.
Tammy Adams said...

The colors in your beautiful bracelet are so soothing. Chronic diseases are especially awful when they strike early in life. The only pain children should know is from the little boo-boos they get when playing.

laurie said...

Please take time for yourself. As a caregiver you need a breather once in a while. You are a very strong mom, it is so much harder when a disease hurts our children.
Hugs to both of you!

Anonymous said...

Your bracelet is really beautiful. I love the colors and bead choices. Equally beautiful are your words about your son. He already sounds amazing at 17. His ability to see possibilities through challenge will serve him well. Thank you for sharing your family's story. I hope for a cure.

Viv@Thoughts from the Desktop said...

Kim you are a warrior and so is your son. Love to all your family.

Liz said...

Gorgeous bracelet! Thanks for sharing your touching story!

Dotti said...

You already know my heart and prayers are with you. Sam is a brave person because he has a good role model in his mom.


B.R.Kuhlman said...

Your design is so full of love and life for your son. Thank you for sharing your story. ♥

Kim said...

Your bracelet is beautiful, and a wonderful tribute to your son. I am sending lots of hugs and prayers your way.

Unknown said...

I'm so sorry for your son and for his entire family. Your bracelet is beautiful, I love the blues and soft browns, it is a beautiful sign of courage for your all.

elisabeth said...

Thanks for sharing your story. Your strength in helping your so is amazing! Beautiful bracelet!

Nicki said...

There is a saying to the effect of 'don't judge another too harshly for they too are waging their own war'. I commend all of you on this never ending battle and join your prayer for his improved health and that elusive miracle. The bracelet is beautiful.

Janine (Esfera Jewelry) said...

Thank you so much for sharing your moving story. Your son and you and the rest of your family are so brave. I hope the medical science will find a cure for this disease very soon. Your bracelet is beautiful!

SoulsFireDesigns said...

Oh Kim, my heart aches for you and your son. Thank you for sharing your story, I think in the back of my mind somewhere I knew there was such a thing as juvenile arthritis, but it's quite different to be able to put someone's reality beside it. I pray they find a cure for it and soon!

Bijoux Gems Joy said...

Your words are a moving testimonial to both your son's strength and your own. The bracelet is a brilliant piece of artistry. Best wishes for your son

Rambling Woods said...

This is a wonderful post for awareness and also for people to understand how it is to have a child who is ill. Thank you for posting this as I did not know about this type of arthritis in young people and I have no doubt that you son is the bravest person and he has the loving support of a great Mom too.. Michelle

Anonymous said...

Kim, your son is so brave. Thankfully, he has a loving mother and family to help him through these hard challenges. Your piece is so beautiful and I hope that your son will "reach" as far as he can. Sending blessings.

Roxi H said...

He couldn't have found a better mom to take care of him. Your bracelet is lovely. Lots of hugs and prayers. Gosh, I didn't know you guys had that much rain in a day.

EB Bead and Metal Works, LLC said...

Thank you for sharing your story of your son! You both are very strong and I hope something can be found to help him and other children that have this disease!
Your bracelet is gorgeous and I love the word choice! I think it is perfect.

Unknown said...

What a beautiful piece... and such an important cause, too. Thank you for sharing !

Kepi said...

I just want to come and give you and your son a hug, so sorry this is happening to him. What a great bean you chose and that bracelet is absolutely stunning. Good luck and keep reaching.

Alice said...

I never knew about this until a family worked with had a child with this. I am sorry your son has to deal with it. But it seems he is a very strong kind. Your bracelet is just gorgeous.

Anita Johnson said...

Thank you, Kim for reminding us that arthritis isn't just for us middle age folks. Your son sounds like a strong young man, I am so sorry he is dealing with this. I too reach out for a cure...there is little known about Lyme disease that I have. It can be isolating. I hope your son is getting that support he needs as well as your family. I will keep your family in my prayers as I hit publish for my comment.
I have been waiting for my first Monarch sighting...nothing this far north yet.

Lori Anderson said...

Reading all of the stories behind people's bead choices and word choices has left me humbled. It's also shown me there is an entire WORLD of diseases that no one seems to be doing anything about. That's a travesty.

Much love.

gail vanderster-zwang aka angelmoose said...

First let me say your pieces is amazing. The soft colors and metals go together beautifully!

I am so sorry for what your family is going through. I think there is nothing worse than having a sick child. I am so sorry for what your son has to endure and for how stoically strong you must have to be. I hope and pray for a cure.

Your word is beautiful.

Unknown said...

'Thats a good' article, i usually amazed with' this thing, i asked myself about this opinion, I wish You'll a better articles that can make another people impressive..don't make the article feel rigit and isn't interesting and poor, i like to read this' article and i think this is "good".thank you' m'y brother.

Unknown said...

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Liz said...

I'm sorry it's taken me so long to catch up on your blog, Kim!
Although I have heard some of your story and being aware of some similarities between your son's disease and mine, I can empathise with your son to the extent of my own understanding. I know I will never totally understand as my own disease, while being diagnosed very young, does bare similarities but also many differences. That said, I have found your post very informative and my heart breaks for him and you! It's never easy when our children take ill with conditions that are difficult to treat and affect their lives long term. I also understand the "you don't look sick" comments all too well!
Blessings to you, Kim. May your prayers be not only heard but also answered.

I love your new blog header!

reclaimed dining table said...

Wonderful post! That is so beautiful. Your strength in helping your so is amazing! Thanks for sharing!

Jeanne said...

Love your bracelet and your thinking. Such a hard diagnosis for both your son and your family. I would by one of those bracelets in honor of your son if you make them to sell. It is beautiful, and would make a great conversation piece with others. Let me know on t hat, or you can message me on Facebook. Prayers for you

Michelle said...

Beautiful new blog header. I love that you can see out the curtain to the field of poppies. So fitting for your blog. :)

Connie Smiley said...

O Kim, that's so hard! Praying for your son, and for you, to the One who holds tomorrow.

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