I don’t know about you but I work everyday to be centered. Yes, every single day. If you read my latest book, Take Me Home From The Oscars you know my family calls me “sparkle plenty.” It’s supposed to be a compliment but actually it’s more of a witticism because I work so hard to be positive. It’s the goal I set everyday, not necessarily to “sparkle” but to be optimistic.

I’m not sure if I believe there are those who are born positive and those who aren’t. I think it’s more of a life choice. I have been accused of only looking on the “good” side of things, the “happy” side of life. And in reality it’s only partially true. My son calls me a “cheerleader” and sometimes even says, “Mom, please don’t cheerlead me.” I understand where he’s coming from. I cheerlead to try to keep him centered and yet I know that nobody can keep someone else centered. We have to do it for ourselves.

My question is why wouldn’t you do everything in your power to keep positive? Why look on the dark side? Why say the glass is half empty when it’s also half full? Those are all choices we deal with and yet not everyone choses to be centered.

So I ask myself why? Why wouldn’t you want to be happier rather than sad? And I can predict many of the answers.

“Life is hard, I can’t find happiness.”

“I have a chronic illness, how can I be happy?”

“Nothing goes my way.”

“Sure, you’ve had all the breaks. I have only run into walls.”

“What do I have to be happy about?”

And to me there lies the problem.. It’s how you deal with adversity. It’s how you deal with the day to day in life.

At one point I was having a very difficult time at work. My boss seemed to be out to make my life miserable and he was succeeding. I would fret and worry about everything he said. I took it all personal until my husband said to me, “Christine, do you think all your boss does all day is sit around and think, how can I make Christine’s life miserable? He doesn’t care. It’s not about you, it’s about him. He is miserable. Don’t take it personally.”

And it made sense. I had to change. My boss wouldn’t change. This simple explanation helped me get back to center.

So let me set the record straight. I am not “sparkle plenty”, I am not a “cheerleader,” I am not a totally positive person by nature. I am normal. I have good days, mediocre days and down days. I get set off by something someone says just like you do. I wake up with my RA flaring and think, how am I going to get through this day?

But that’s when I stop and tell myself only I can make my day better. Only I can live my life in a centered way. My friends and family can’t do this for me. I have to take responsibility for myself and decide that I am going to look on the bright side off things rather than the dark. I am going to work hard everyday to be positive. I am going to be concerned about helping others rather than dwelling on what isn’t going right in my world. And for me it works. I move back to center.

I cry when I hear the stories and see the photos of Christine’s Kids. They break my heart. But their spirit then fills me up again and makes me work to bring more attention to them. Not to me, but to them. To take their innocent voices and keep them in my head. To hold on to their smiles when you know they are in pain. By focusing on others we don’t have as much time to dwell on ourselves.

I do believe life is not easy. It’s a roller coaster ride. You go up and you go down. Things are great and then they’re not. We can’t control the roller coaster, but we can control the way we choose to take the ride.

And once that choice is made, we have to work to keep it in place.

I’m not saying you can immediately turn a bad day around, sometimes you need to just give in and say today I am sad, but tomorrow I will be better. I call it a pity-party day. We all need them at times. Just don’t let them accumulate. Find something positive, your child, your spouse, your friend, your dog or cat, your garden, your gym, your computer, something, anything to get yourself back to center.

The dictionary defines centered as middle, core, hub, halfway point. I call it living the better life. And anything worth having is something you have to work for.

I choose to work for centered. The other options are just not any fun.

Since starting my Christine’s Kids Facebook page over a year ago one topic comes up over and over again. The proper diagnosis for Juvenile Arthritis. When I recently posted the Facebook question, “Growing Pains?” the amount of answers was surprising and they all had to do with the same issue. Doctors were disregarding parents concerns over their child’s aches and pains with the simplistic answer, “It’s just growing pains,” often delaying the proper diagnosis for months, even years. By now we all understand that diagnosis is imperative to treating Juvenile Arthritis because once you get the proper diagnosis you can start the medications and treatments. The goal is to prevent damage before it starts because damage is irreversible. A good doctor will diagnosis this disease and get started, even if the definitive blood work is not showing up early. As an adult I was one of those whose blood work did not indicate that I had Rheumatoid Arthritis but my doctor looked at all the symptoms and said, “It’s not showing up in your blood work yet but I am taking an educated guess, I think you have RA.” All the other symptoms were there and his educated guess turned out to be correct.

Doctors understand the need for defining the disease and finding the right medication. They also know that this often takes time because each child or teen is different and reacts to medications in their own way. It’s a roller coaster of treatments from the get-go. One medication will work on the joint pain but cause other side effects. Another medication might have a  milder side effects but doesn’t alleviate the joint pain. And it rolls on and on until hopefully the right answers come along.

The Mama Bears, as I like to call JA moms because they are so diligent in finding answers for their children, responded to my Facebook question, all slightly different and yet very similar.

“We were told it was growing pains by four different doctors.”

“I was told by a rheumatologist to ignore my son when he wakes up screaming in pain.”

“I was told that our daughter was allergic to being sick, high fevers, rash and joint pain but normal for blood work.”

“My doctor said my child was spoiled and just wanted attention.”

“After waiting three months for an appointment, our child was put on high dosages of steroids because they couldn’t’ find anything wrong even though her knees were swollen and she can barely walk.”

“The doctor sent my son to physical therapy.”

“When my child stopped walking and went to crawling a nurse told me she needed a new pair of shoes.”

“My son was already diagnosed with psoriatic arthritis. When we took him to the ER for severe pain we were told it was growing pains.”

“At sixteen I started getting joint pain and was told by several doctors that it was just growing pains.”

“As a grandmother with RA I recognized my Granddaughter might have JA when she started limping as she learned to walk. It was hard convincing the doctor.”

“When my child was 16 months and not walking I was told ‘Some kids walk later than others.”

“My son was diagnosed with a sprained knee. Six weeks later he was diagnosed with systemic arthritis.”

“We were told our 4 year old had a Pain Syndrome and it was all in her head and she had learned to behave this way.”

“My daughter had knee surgery to repair her knee, only to find out two months later it was JA.”

But it doesn’t stop with the medical world. Teachers and school kids define JA as “your just lazy, “ or “you’re a sissy who doesn’t want to play sports.” Children have been bullied and humiliated because they can’t participate in activities when in reality if they do participate and work through the pain they can do irreparable damage to their young bodies.

And it goes on and on, kids not crawling, walking or running. Kids complaining of pain in their joints. Swollen, hot joints hurting. Fingers not able to move properly, feet not supporting toddler’s legs. Yes, there is indeed “growing pains,” and many children experience them, but growing pains usually go away quickly. They usually don’t last for weeks or months at a time. They often don’t slow kids down, they just ache.

So when do you not accept the diagnosis of “growing pains?” From my experience as an adult with RA and my conversations with mothers and JA children, the best advice I have found is to use your instincts. Be pro-active. You know your child. You know when they are using growing pains as an excuse vs. not being able to walk. And if you are in any doubt, get to the bottom of the issue. It might take two doctors, it might take six, but whatever it takes you need to find out what is causing the pain.

Our parents lived in a world where the doctor’s word was gospel.  Because of the Internet and television we don’t’ live in that world anymore. We go online and read, we buy books and read, we watch medical reports on the news and we listen. We talk to other parents, and we compare notes. Our generation is not one to take any word as gospel if the symptoms are not improving.

I have had many doctors in my life dealing with my RA. Some good, some mediocre and some excellent. If I were a Mama Bear you can bet I would be aggressive.  I admire the Mama Bears because they look after their young. They know when someone is just placating them. They also know when someone cares. They don’t stop until they find the caring and competent combination in a doctor.

You might take “it’s only growing pains,” as an answer once, maybe twice, but after that you need to check it out. You need to see other doctors. If I have learned anything in medicine at all over my 25-year journey with RA it is that we have to be at the helm of treatment. Nobody cares as much as we do. Nobody will work as hard as we will to find the answers. That’s what Mama Bears do. That’s what smart people do.

That’s the wisest thing to do. Never take a cliché as the truth if you have any doubts. Never, ever give up.

It’s the job of a Mama Bear to protect her young.

Between the NY Times article about a three-year-old boy who was diagnosed with juvenile idiopathic arthritis (‘The Boy With The Thorn In His Joints’) and the Dr. Oz television program featuring the boy and his mother who is a reporter and wrote this story for the newspaper, much has been said about the fear and hope of medications vs. holistic approaches to treating disease. I always make it personal. How does it affect Rheumatoid Arthritis?

After I watched the program I reached out to several leading rheumatologists around the country to get their thoughts on this idea that diet can cure Juvenile Arthritis, or any arthritis for that matter. They all came back with pretty much the same response. Alternative methods should not replace current medicines and therapy. Using any alternative methods in addition to medications is up to the person, but alone? A BIG question mark.

JA moms and RA patients are writing the Dr. Oz show. They are upset and I can understand why. Everyone who deals with this chronic disease knows that the key is to halt damage. Damage to the joints and the organs. Damage that is irreversible. They are shocked with this “one shoe fits all” media approach to a severe disease.

One of the most frustrating things I hear over and over from JA parents is the frustration of misdiagnosis and late diagnosis. Doctors who say “Don’t worry, your little one will walk when he’s ready” in response to the question “Why is my child not able to walk yet?” Or insurance companies make doctors start with the older, weaker medications and work their way up to the newer biologics because of the cost, meanwhile losing valuable time in controlling the disease.  And one of the most common obstacles is there are no pediatric rheumatologists anywhere near where people live. All of these roadblocks hinder the prevention of damage. They hamper the process.  That takes us back to Damage is Irreversible. Fruits, vegetables and nuts will not halt damage. Wearing copper bracelets will not halt damage. Even a positive attitude will not halt damage. Not with this severe disease.

Of course parents are fearful of giving strong, often toxic medications to their JA children. Sure RA patients are fearful of taking these medications. Offered a diet vs. an injection we would all choose diet. But I don’t see that as the alternative. Not at all. I see it as an addition.

I have been on every medication and every combination of medicines when  RA was running wild in my body. My doctor would control one aspect and then another issue would pop up. It was as if the disease was one step ahead of me at all times. After seven years of little relief due to either the complications of the medicine or the lack of its control over RA, I became eligible for a research program.

Was I fearful? Yes, but something took over that was more powerful than fear and that was hope. I had lost all hope because nothing had worked.  My doctor held out the coming research program as the carrot to dangle before me to keep me going. And then one day I got the call. The first biologic medication is ready for patient testing. Hope. It was right in front of me, waiting for my body’s responses. Hope, unknown, yes, only the rats had proven it effective. And now I would be the extension of the rat. I would be phase II in the research for the public.

The hope far outweighed the fear. The injections were scary. I never liked shots, much less injecting myself twice weekly. And every week when I would go back to the research lab I had to sign papers. Disclaimers. This lady had died of a heart attack. This man developed cancer. Three people across the U.S. had bailed out of the program due to side effects. And on and on it went for weeks, then months. The side effects on others. The rational side of my brain said of course these side effects could have happened to these people without taking the research drug. The emotional side of my brain said, when is it going to happen to me?

So yes, I understand the fear of people trying new medications especially giving children the same medications that adults take only in smaller dosages. Many medications that don’t have any long history….yet. I totally understand that and have great empathy.

But I also have great hope. When nothing else works we can’t give up. We have to keep moving forward. Trying the new medications. Trying the unknown.

I have been down that road, and while it is fearful, it is also hopeful. Would I want to give my children these medications? Yes, because it offers them hope when nothing else works. I don’t like to see children cry over shots. But even worse is seeing them cry over trying to walk, ride a bike, play ball, cheerlead or dance. I would want anything that could give them a childhood, an adulthood, a life. It is often a long, discouraging road to finding a drug to halt the damage, the pain, the disease. But from my personal experiences it is a road worth taking.

A writer on Twitter just posted a blog about the Oscars last night and how it brought back my book Take Me Home From The Oscars. The nicest compliment you can give an author is to relate to their story. This was nice!
http://rheumwarrior.blogspot.com/2013/02/while-i-was-watching-oscars-last-night.html

I didn’t have to think long to know what I was going to write on this, my second Creaky Joints blog. This one had to be for the JA kids. Or as I call my favorite Facebook page, Christine’s Kids, because I have adopted them emotionally. I never knew kids got arthritis until I published my memoir. All of a sudden I kept hearing the words Juvenile Arthritis. Could there be such a thing? My perception was still the stigma that arthritis was for the old. But being diagnosed fairly young, I knew that wasn’t the whole story. But kids? I couldn’t comprehend how kids could deal with the pain, the invasion in your life, the way arthritis can stop you in your tracks. I could barely deal at times. What about these kids, these teenagers, these young adults just starting out? How did they cope?

And then at a black tie fundraiser for the Arthritis Foundation in Los Angeles I met some JA kids dressed up in suits and party dresses, confidently speaking at the podium telling their stories, getting up slowly from their chairs, wearing flats so they could walk. I was just a grown up version of them. We were kindred souls. The inner group that sadly knew what really is.

But first, let me clarify what arthritis is for children.

What it isn’t is Osteoarthritis the disease that people get from wear and tear on their joints. Many athletes have Osteoarthritis. And yes, you do get this disease as you get older. But Osteoarthritis is as different from Rheumatoid Juvenile Arthritis as a bumblebee is to a lion. A bee stings you and it hurts, a lion eats you. Sounds gross? Well, there is no doubt that Osteoarthritis hurts. It’s worn out joints that are rubbing against each other. But Rheumatoid Arthritis actually eats at your joints, attacks your organs. Ointment, an aspirin and a Band-Aid help a bee sting. An arsenal of strong, often toxic medications, if you’re lucky, helps your Rheumatoid Arthritis, but even then the complications are always around the corner. Lions don’t go away easily. Because these two diseases both have the word arthritis in them, they are lumped in all one column, when in fact Osteo is a sentence or a paragraph while Rheumatoid is a 500-page book.

Seeing these kids talk about their journey and associating it with my own journey made my heart go out to them. Many days I could barely cope, how did they do it? How do the parents watch as their kids suffer? There is nothing easy about Juvenile Arthritis. Nothing.

The more I learned about JA, the more I realized how little people knew. I was used to getting the ”Oh, I have arthritis in my big toe; it just kills me” replies from well-meaning people who read my memoir about living with arthritis. “I take two aspirin and I’m pretty good,” they would share with me. Right. Two aspirin wouldn’t even nudge RA pain on a bad day.

Once I joined Facebook I learned even more through the exchanges with new friends. Still, there was something missing. The depth, the seriousness, the lack of awareness for the kids. And that was how Christine’s Kids Facebook page was born. A page just for kids and teens. A page to create awareness for a very misunderstood disease. Each week we honor a new Superhero and tell their story. Letters and photos come in from parents and kids all over the world. Sadly, JA knows no boundaries.

My life was taken over with Rheumatoid Arthritis but I got lucky.  After years of medications, combinations of medications and research programs I found a medication that put me into medical remission. Time to give back. Time to work to create more awareness for arthritis in general, and for the kids with arthritis in particular. And today my life is still taken over with arthritis, only now it’s for the kids. They have also taken over my heart.

My goal, of course, is a cure. My immediate goal is awareness. Kids shouldn’t be made fun of because they can’t run or jump. Infants should be able to learn how to crawl and walk. Teenagers should be able to dance and play sports. This is what childhood is supposed be about, not doctors’ offices, IV infusions, emergency rooms and hospitals.  If I get in a pity party for myself, I think about the kids. They are the ones we should focus on.

So what do we do? We support organizations and social media pages that feature these special kids. As advocates, we work together for awareness. There is more than one way to reach a goal and we need to recognize this and each take our own paths as long as our hearts are in the right place.  When you visit Christine’s Kids your heart can’t be anywhere but in the right place, with these special Superheroes. When you watch the video you will understand. I am not diminishing the pain or suffering from all arthritis. But, as adults we can speak up for ourselves. It’s harder to get someone to listen to the younger ones. We need to stand up and have our voices heard.

Listen to the song, look at the faces. Let’s make a difference. These special kids deserve it.