Arthritis is not what you think it is

What we need to tell our doctors and what they need to tell us.   I once dreaded public speaking. Surprising because in front of television cameras I am totally calm and focused on my subject matter.  But put me in front of a room full of people all looking up at me standing behind a podium and my heart would beat, my stomach churn and my voice go one octave higher, not to mention faster. That was before. Before I was diagnosed with RA and before I knew kids got JA and before I had a mission. Now, my mission is to create awareness for this disease, especially for the kids, teens and young adults. Now I am as comfortable in front of hundreds of people in an auditorium as I am in front of millions on TV. My message, arthritis is not what you think it is. My focus? It’s not my heartbeats or my stomach churning, my focus is my mission. To date my advocacy audiences have all been associated with having arthritis. Parents who want insight into their JA kids, young adults who are searching for their identity and arthritis organization executives that are looking to raise money for awareness and find a cure. The perfect audiences because we are all on the same page. However, one very important page is missing. The doctors who treat RA and JA are not in the audience. The pediatricians and the rheumatologist who diagnose, write the prescriptions and monitor their patients are the missing. The reason I feel that page is missing is because the doctors are educated to treat the disease and they do it well, but they are not the patients. They don’t personally experience the way we feel, or the emotional and personal changes in our lives unless Read More

NOW CHRISTINE KNOWS WHAT EVERYONE’S BEEN TALKING ABOUT…

A day at the JA Conference. A conference for kids with arthritis? What is all this talk about a conference for juvenile arthritis? I had heard a lot about this conference, but hey, I have been to so many conferences. Lots of sitting around in those uncomfortable chairs drinking lukewarm coffee with someone telling me how to live life. Not my favorite thing to do. Until now. First, I felt honored that the Arthritis Foundation asked me to speak and lead an image class for Young Adults.Second, I was curious, how could these kids have fun at a conference? And Third, I wanted to meet all of my Facebook and Twitter friends. I felt like I knew them well but to see them in person? That was what I looked forward to the most. Well, now I know what everyone has been talking about. Why JA and RA families want to travel across the country to wherever this conference is being held. The reason? IT’S MAGICAL The JA Conference is magical. Sure the chairs are the same and the coffee is too, but the work, planning, love and dedication that goes into making kids, teens and young adults have an incredible experience is beyond anything I have ever seen….and I’ve seen the biggest and best of the entertainment worlds conferences. There is something for everyone. It’s not a lecture, it’s a sharing, a uniting of people who have something important in common. This sharing lets us know we are not alone. There are people who care and understand. Nobody said, “Yeah, I have arthritis, look at my big toe.” Nobody had to say anything, we just got it. Everyone had fun. Everyone felt the love. Everyone felt the support. And lucky, lucky me, I was there to experience it. Do I want to go Read More

Oprah, Lady Gaga, Spielberg, Beyonce, Madonna, Taylor Swift, Bon Jovi, Ellen…Where are you?

Christine on the difficulty in finding a celebrity spokesperson to stand up for RA and JIA. I spent part of the long holiday weekend talking with friends about advocacy. We are all advocates, but for different diseases. They have far more “popular” diseases than I do. Popular just doesn’t seem like the right word when talking about serious diseases. But then I have heard the word “sexy” used with Cancer. What in the world can make Cancer sexy? Nothing, right? But when it comes to media attention, the media has deemed Cancer sexy because of the huge celebrity support. I attended   Stand Up For Cancer, the TV special that is broadcasted on every network, all over the world.  One by one the biggest celebrities came forward and told either their personal stories about dealing with Cancer or the story of a loved one. TV personalities, movie personalities, all of Hollywood were speaking up. And what does that do? It raises millions of dollars for research and support for Cancer patients. It creates awareness. Everyone knows what Cancer is. Everyone. It doesn’t make Cancer sexy to anyone who has experienced it nor has a loved one who experienced it. It makes Cancer sexy to the media because of the celebrity support. Google Celebrity Advocates for Disease and you will see name after name, disease after disease. Muhammad Ali and Michael J. Fox for Parkinson’s. Ronald Regan and most recently Glen Campbell for Alzheimer’s, Elton John for AIDs and Angelina Jolie for Breast Cancer. I consider this a wonderful use of celebrity. Helping others in one of the most important ways, with serious health issues. Generating money and awareness for research, for that word we all want to hear….a cure. When I wrote my latest book Take Me Home From The Oscars I came out of Read More

Thank You Steve Jobs

Christine on how the computer changed her life for the better. Yesterday I wrote out a post for my Facebook page. I started out just saying I was going to replace my old and tired laptop and as I wrote on my keyboard, looking at all the things on my desktop I realized just how much the computer had changed my life. Years ago I went into learning the computer kicking and screaming. I was a writer, I loved my pink Smith-Corona typewriter. Yes, change is hard to make. My first lesson on a computer was with a guy who was so arrogant I felt like he was snickering behind my back as I asked him “How do I turn this thing on?” I knew right away he was the wrong teacher for me so I searched some more until I found a gentle man who didn’t think any question was a stupid one, and boy did I ask some stupid questions. Slowly between some college computer classes and a little help from my personal teacher I got it. The computer is a very smart typewriter. And the rest has been very happy history. So as I wrote this post for Facebook it went from a few lines to more, just as the computer took over my life and kept replacing other things that I thought I couldn’t live without. Now I know I simply can’t live without my computer. Here’s my Facebook post: Buying a new computer today. Saying goodbye to the old one. I wrote three books on this wonderful Mac laptop, started three Facebook pages, learned how to make a Keynote presentation, edited hundreds of photos for publication and joined Twitter. Shared a lot of stories and met a lot of interesting people. Traded my treasured Filo Read More

Need a pillar, or maybe a few?

Christine on how you can get people to lean on.

Christine on living centered

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 Oscar,  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 Read More

GROWING PAINS…..REALITY OR BRUSH-OFF?

When do you NOT accept the diagnosis of growing pains? 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 Read More

Christine on the many frustrations JA parents face

Balancing fear of a new medication against the hope it might work. 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.  Read More

Christine on Christine’s Kids

There is nothing easy about Juvenile Arthritis. Nothing. I didn’t have to think long to know what I was going to write on this, my second CreakyJoints 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 Read More

10 Things Most People Don’t Know About Me by Christine Schwab

Welcome to Invited Blog on CJ  CreakyJoints is beyond delighted to have Christine Schwab as our first contributor for our new Invited Blog feature. About our Invited Writer… Christine Schwab, the mega successful fashion, beauty and lifestyle author, columnist and TV personality, was diagnosed with rheumatoid arthritis in 1990. In her third book, the memoir, Take Me Home from the Oscars: Arthritis, Television, and Fashion and Me, this current National Arthritis Foundation Ambassador wrote about how she kept her RA a secret for many years. Among Ms. Schwab’s latest arthritis awareness efforts is the creation of Christine’s Kids, a Facebook community for children and teens with autoimmune diseases where the emphasis is on hope and positivity. To visit Christine’s Kids: https://www.facebook.com/pages/Christines-Kids/218905234862177   10 Things Most People Don’t Know About Me by Christine Schwab About a month ago I received an email from CreakyJoints requesting I write a blog for their website.  The only problem was the last blog I wrote for my own website was many months ago.  Schedules and responsibility buzzed through my mind; can I take on this commitment? And then came the second call from the creator of CreakyJoints, Seth Ginsberg. After a few minutes on the phone I realized we had a lot in common. Our words of positivity, sense of humor, helping others overlapped. We were on the same page when it came to dealing with an autoimmune disease. The page we are on is one of hope. For me, it’s been the only page that kept me going for years with RA. So what should I write on my first blog? Everything you need to know about me is on my website. And I keep Twitter and Facebook friends up to date on my pages. But that’s not the complete story of who I am. I am not the fashionista, nor Read More