Christine Schwab is known as one of the most successful television personalities and authors in fashion, beauty and lifestyle. She has been a recurring guest on the most popular network television shows including: Oprah!, NBC Nightly News, CBS-The Early Show, The Today Show, Live with Regis and Kelly, Entertainment Tonight, The Insider, Rachel Ray, Inside Edition, CNBC News, Fox Network News, E! Entertainment and Weekend Today.

Three-time author, Schwab wrote Quickstyle (Random House), The Grown-up Girl’s Guide To Style (Harper Collins) and Take Me Home From The Oscars (Skyhorse). Other writing credits include contributing style editor to Redbook magazine, style columnist for Arthritis Today and featured stories in O, the Oprah Magazine, Newsweek, Vanity Fair, Ladies Home Journal, Women’s World, The Chicago Tribune, The Huffington Post, The Washington Post Book Magazine, The Orange County Register, The Daily Breeze and The OC Magazine.

Christine is an Ambassador for the National Arthritis Foundation.
27
Jan
2015

THE PATHWAYS OF LIFE

 

I guess it was because I was so silent for so long.

Twenty years with only my doctor and immediate family knowing about my battle with RA.

When people hear I kept silent they are shocked.

“Why couldn’t you let people know?” is their first question.

“Didn’t your symptoms give you away?” is always the second.

And if you’ve read my latest book, Take Me Home From The Oscars: Arthritis, Television, Fashion and Me you already understand. It wasn’t hard to keep silent, in fact it was easier for me. Silence had always been my safety blanket during my childhood. If I didn’t tell the kids at school that I lived in foster homes most of the time, seeing my mom only a few days a month, they would think I was normal. I only wanted to be normal and fit in. Silence made that possible just like silence made it possible for me to keep my career in television as a fashion and lifestyle reporter. My perception of arthritis at the time I was diagnosed was from watching Arthritis Telethons years ago on TV where everyone was old and crippled.

Many coveted my career. Some blatantly tried to take it away from me. I couldn’t give them the ammunition that would help them. I had finally made it and it felt good to be accepted and appreciated, things one never feels in foster care. I finally felt normal.

And because I was in fashion I knew how to cover up my RA symptoms. Feet hurting? Sneakers became my trademark. I convinced millions on television that they were the latest trend before that was actually a fact. Kathie Lee even commented on air one day about my high top khaki sneakers, “You have to be very confident to wear those sneakers, Christine.” And my years of thinking on my feet because of working with Regis Philbin kicked in as I replied, “Kathie, these are the hottest sneakers for spring. Everyone’s wearing them.”

I knew how to alter my make up, hairstyle and wardrobe in order to keep working through weight gains while taking high dosages of prednisone. It’s what I did for all my makeovers on TV so it was easy for me to do it for myself. A little more length in the hair, a little shading on my cheeks, a little more emphasis on the eyes did the trick.

And then 20 years zipped by and my secret was still intact.

So what made me come forward and take another pathway in life? Enbrel.

My doctor had been able to prevent visible physical damage with his constant adjusting of my meds until I ran out of meds that worked and went into the trial program for Enbrel. I couldn’t take any other medication other than the secret Enbrel dose I was getting, either the full dosage, half dosage or placebo. I wouldn’t know until the six-month trial was over.

When the trial ended I learned I was on the placebo. It taught me three things: one, the power of positivity, two, that a new pathway was opening up in my life and three, it was time to give back

I contacted the Arthritis Foundation and said I wanted to use my media experience to change the perception of arthritis. With the new biologics everyone wouldn’t end up in wheel chairs. And that was when I found out kids got arthritis, too, and young adults, and people like me. And then it hit me, if I didn’t know about the kids and young adults with arthritis others must not know either and that’s when Christine’s Kids Facebook page was created. I didn’t want these kids to feel alone and different like I did as a child. I wanted them to feel like they could conquer anything and everything, that they were Superheroes.

The JA stories overwhelmed me and broke my heart but the spirit of these kids amazed me. Their strength and determination inspired me. They fought adversity and I, as a child, had fought adversity. I understood not only their disease but also their fight for survival. Their fight to be normal.

And as much as I loved fashion, I loved the bond I felt with Juvenile Arthritis even more. I understood what they were going through physically and emotionally.

I had heard about second acts in life and now I am living one. It’s totally different than television, it’s real, it’s painful, and it’s inspiring. My first act in the fashion world came from my love of clothes and the belief that everyone can look their best if they just know the secrets. That we can look and become whoever we want to be with the right style. My second act, in JA advocacy, came from my past and the belief that no matter what, you can overcome adversity and use it as strength.

My latest goal?

Everyday to try to remind a child who believes that they can’t achieve their goals that they will find a way.

 

1
Jan
2015

The Gentle Bulldog

 

A new beginning. A fresh start. A time to look back and plan forward. A time to do something different, make a difference, be different.

It all sounds so positive, so refreshing, so much the right way to start out a new year. Especially if you have a disease that requires major medical care. A disease that has medications and treatments that is new, groundbreaking, and hopeful…and extraordinarily expensive. A disease like Rheumatoid Arthritis or Juvenile Arthritis.

Medications and treatments have changed over the past decades. They are better, they are stronger, they offer and give hope and yet day after day I hear the same stories.

“My insurance won’t pay for the new biologic medications until I fail all of the old medications.”

“My insurance is cutting back on their payment amount for my toddlers JA medication and I can’t afford any more out of pocket expense.”

“My insurance cancelled my me.”

“My insurance keeps going up and I can no longer afford it.”

But wait a minute. We live in America. We take care of those who need help. We are progressive and believe in doing whatever to be pro-active and preventative. Except there is one caveat…only some know how to break through the minutia. Only some get what they need and deserve when it comes to medications and good care.

So my New Years Resolution for 2015 is to share with you what I have learned from my journey as a RA patient and JA advocate. And by picking the brains of others; those in the know, those who never give up, who never take no for an answer, those who I call “Bulldogs.”

I have some ideas on how you can become a Bulldog; abet a “Gentle Bulldog.” My definition of a Gentle Bulldog is one who gets what they want without making enemies, stepping on toes or being disrespectful. One who uses finesse to achieve their goals.

And fifteen years into my television career that same Bulldog mentality helped me get what I needed to survive with RA. But first I had to find a Bulldog doctor because health care is a team effort; you and your doctor, or you, your child and their doctor.

Three doctors couldn’t figure out what was wrong with me, but I kept going until I found the doctor who had the diagnosis. And we became a team. I respected his time and efforts and he understood my need to maintain my career in television.    I was honest and upfront with him, I came to appointments on time and with questions written down, I understood how busy he was. He in turn was on top of my health care. He monitored me closely; “Do I really have to go for labs again?” I asked during a crazy work schedule. “Yes, Christine, you must get labs” and so I went and never asked that question again because I understood labs were for my health, not his.

After failing medication after medication, my Rheumatologist started using two, three or more medications at the same time to halt the RA damage and then used steroids when nothing else would allow me to work.

Some patients and doctors give up, walk away feeling hopeless. My doctor kept saying, “We just have to keep you going Christine, we have to prevent damage.” I understood. Working in the television industry you learn early on that success is based on perseverance.

I traveled a lot with my work and of course my RA would act up because of the travel so he gave me his cell number. I never abused it. But I did use it when necessary and time after time he came to my rescue with good advice, an out of town referral or a medicine.

Our relationship was always based on respect and hope. When I was at my worst, thinking I would never get my life back, he kept me going. “Christine, there are new, exciting medications coming down the research pipeline, we have to hold on.” And seven years later came the Enbrel research program. My doctor fought to get me in and encouraged me to stay even during the tough times. “If you leave the program you won’t get the medication for several years,” he told me. I stayed. When the program ended we both found out that I was on placebo. Between his attitude and my attitude we were sure I was on half dosage. As a result of his advice I was one of the first to get the full strength medicine and my joints went into remission and have stayed there.

Between my career and my persistent and positive doctor, we proved that a Gentle Bulldog team gets results. Whining and complaining was never an option. Giving up would have been a deal breaker for either of us.

So my New Years gift to you is this insider’s knowledge of how to become a Bulldog for you or your kids health. A Gently Bulldog, but a bulldog none-the-less.

When a doctor says there is nothing more they can do for you or your child. You find another doctor that will be creative and aggressive. If your doctor doesn’t have hope, how will you have hope and without hope, how will you or your child survive?

When an insurance company says you can’t have a medication or treatment because it’s too expensive.

You have the right to appeal. Use it! It’s proven that those who are the most motivated and don’t take no for an answer get the best results. In the Television world those who succeed don’t stop asking until somebody says, “STOP!” Win over your insurance contact; you need this person on your team. Talk shorthand. They don’t have hours to listen to your every issue. You pick one strong example, “My toddler cries in pain when he tries to walk,” or “My daughter is loosing her childhood,” “My son misses so much school, he will never be able to go to college.” And you tell it with compassion, not anger.

You get them on your side by being understanding, “I know you hear this all the time, but I can’t take care of my baby. Imagine not being able to pick up your child.”

You have compassion for them, “You have a tough job, I understand and appreciate that, but I really need your help and guidance.”

You put yourself in their place, “I know you are just carrying out your companies policies, and I so appreciate your time and efforts, but if you could just offer me any guidance, I am in desperate need of your help.”

You can try a nice follow up note or a thank you message on their phone. Use positivity instead of negativity to get what you or your child needs.

When your insurance company appeal is turned down.

You partner with your doctor. A good doctor will be your #1 team member and help you navigate both your health and the insurance world. Together you will be advocates for you or your child’s health. Two dedicated advocates are always better than one. You ask your doctor to opine (make a decision) on what kind of damage you or your child’s joints or organs can sustain if they don’t give you the medicines your doctor is recommending. You ask your doctor to make sure this information is in your medical records that are housed in his office or hospital so there is evidence if you or your child gets damage that could have been avoided by proper medications.

And most important, you do not get angry or confrontational, that won’t get you anywhere. You don’t want lawyers involved because this is not the time for anyone to be digging in their heels; you want and need the medications for you or your child.  Tell your doctor how much you appreciate him. Everyone likes positive reinforcement.

Remember, insurance companies are motivated by cost. The patient and doctor must be motived by care.

When all insurance companies have turned you down.

You investigate all of options. You go to the Pharmaceutical companies or the charitable organizations and seek help.

Here are a few:

Enbrel (Amgen) patient support: http://www.enbrel.com/ENBREL-support-program.jspx?WT.srch=1, www.amgenassist.com Call 1-888-4ENBREL (1-888-436-2735) Monday – Friday from 8:00 AM to 8:00 PM ET to speak to an Enbrel support reimbursement counselor.

 

Humira (AbbVie) patient support and co-pay savings card: https://www.humira.com/global/starting-humira

 

Simponi (Janssen): http://www.janssenprescriptionassistance.com/simponi-cost-assistance

 

The Arthritis Foundation: http://www.arthritis.org/

 

American College of Rheumatology:  Patient assistance programs for rheumatology drugs

Patient Resources from American College of Rheumatology: http://www.rheumatology.org/Practice/Clinical/Patients/Information_for_Patients/

Creaky Joints, Email or call them at:

info@ghlf.org or call us at 845-348-0400 (Mon – Fri, 8:00 AM to 8:00 PM ET).

And most important and my New Years message for you, you never give up because that’s what being a “Bulldog” means. We never give up!

14
Nov
2014

Arthritis Speed Talking

 

Working on television for over 25 years I have learned to talk shorthand, or speed talking, or whatever you want to call it. On talk shows or news programs I would have anywhere between 2 to 6 minutes to get my message across. One segment with a head to toe makeover might get 4 to 5 minutes if I was lucky. The top ten beauty tips, most likely 3 to 4 minutes! I could get an entire season of fashion tips into a 4 to 5 minute segment, and that’s with a host interrupting! An interview for a news program might get a minute or even seconds. They often let you me talk a long time with the camera rolling during the interview but when it gets to the edit room they have the timers going and I promise you it will be cut down to the crucial facts. And the more popular the show the less time allotted to each segment.

One of my favorite TV Producers taught me the importance of making issues personal. “When you talk about hundreds of people being displaced because of flooding it’s a shame. When you talk about how the flood impacted one family it becomes a tragedy.

So when I decided to be an advocate for arthritis, a far more complex issue than fashion, I found it much harder to convey the seriousness of arthritis, the difference in the many types of arthritis and the fact that is near and dear to my heart, the kids and teens with arthritis. How can I explain osteo arthritis vs. rheumatoid arthritis vs. juvenile arthritis, versus, versus, versus…

I understand all the different types of arthritis and they are vast, but trying to get a non-arthritis person to understand or become interested is a major challenge. I watch their eyes glaze over when I start in on the autoimmune rheumatoid arthritis. First what is autoimmune, second what is rheumatoid and third, oh, yes, my grandma had that one, arthritis.

And then the inevitable pinky finger comes up as your listener holds her little finger with the bend at the joint and says, “I get it, I have arthritis too,” and indeed she does, but ask her the difference between rheumatoid and osteo and she rolls her eyes up in her head and shrugs her healthy shoulders.

The only thing worse is telling someone that kids get arthritis. Most look at you as if you are making this up, maybe for sympathy or attention? “Yes, babies have it, toddlers have it, and kindergartners and teenagers have it.” “Can’t they take Bayer?” is a common comeback, as if that is the answer for all arthritis. Mention cancer drugs for arthritis? They think you are crazy. “Do you go to a cancer doctor?” will often come up. When you say, no I go to a rheumatologist they usually say, “What’s a rheumatologist?” and then the questions and confusion starts all over again. It is a vicious, frustrating and disheartening circle. I have tried the in depth explanation and the technical statistics but I see their eyes wander off about a minute into the conversation.

And yet without people outside the arthritis community understanding there will never be the reality of the seriousness attached to this disease.

So how can we get the three major kinds of arthritis across to the public? And how can we do it in under a minute? Because that is about the length of focus you have with someone when you talk about health.

Set your phone or kitchen timers and let’s go…all three in under a minute.

Here are some key points:

Osteoarthritis your joints wear out and rub together causing severe pain.

Rheumatoid Arthritis is an autoimmune disease where your body mistakenly attacks your own joints. The inflammation can damage not only your joints but your organs as well.

Juvenile Arthritis often has another word in between the juvenile and the arthritis like inflammatory or rheumatoid but basically it mirrors rheumatoid arthritis in adults.

Most likely you wouldn’t be talking about arthritis unless you or someone in your family has it and this is one time when having arthritis will help you communicate because you can make it personal.

So taking my basic information and my personal experience, here is my one-minute explanation.

“I thought arthritis was what you got when you were old. 24 years ago I was diagnosed with Rheumatoid Arthritis, a disease I had never even heard of. I am one of the lucky ones who went into a research program that led to remission but before that I learned the hard way how serious Rheumatoid Arthritis can be. It’s not just an achy knee or elbow, it’s an autoimmune disease where the body attacks the joints, causing damage to not only the joints but also some organs. My father had Rheumatoid Arthritis and my Grandmother had the most common form of arthritis, Osteoarthritis where you joints simply wear out from heavy use such as sports or aging. But for me the most heartbreaking of all the over 100 types of arthritis is Juvenile Arthritis. I never heard those words before either. In the US alone over 300,00 children from infants to teenagers suffer from this autoimmune disease that robs them of their childhoods. Arthritis is not a disease of just the old.”

 55 seconds!! 6 mentions of arthritis! And personal!

Because I made it personal and didn’t go into too much detail, nor talk about it for 30 minutes, nor confuse people with all the different kinds of arthritis I got the main points on the table.  And hopefully because I made it personal people will ask me a follow up question, and that too needs to be short and concise. My rule with friends and family is we talk about health for no more than 15 minutes at a time. Anything longer and you have lost your audience and your impact.

Is it easy to speak shorthand about something that invades and often devastates your life? No, there are so many stories and so many issues and so many types of arthritis and those of us with one form of the disease or another have a lot to say. And we want people who don’t understand, whether it is our legislatures on Capitol Hill, or a National TV program to listen, really listen and understand. The key to that is the shorter and more concise we can make our point, the more people will listen.

Understanding, compassion and most important, awareness for arthritis…with Speed Talking!

15
Oct
2014

THE OTHER SIDE OF
JUVENILE ARTHRITIS – FEAR

 

You ask what do I know about arthritis medications? About 25 years worth of trying, failing, trying, failing and trying again until my joints went into remission. Yes, that’s a long time of trying and failing and a lot of that journey was fearful.

So when I see babies, toddlers, first graders, elementary school kids, junior high teens and freshman at college dealing with Juvenile Arthritis my heart breaks because so many of them have or will have this same journey to go through.

Some are very lucky and the first, second or third medication puts them in remission. Others take longer. And all along this JA journey is the fear of what are the side effects of these medications, especially the biologics that don’t have any long-term history. Or rather, I am that long-term history having been on a biologic for almost 16 years. What is the future? Should we be afraid?

Nobody can know the future at this point because it’s simply too early. But this is what I do know now. Don’t let your fear get in the way of your goals. Don’t let the fear be an obstacle that stands in the way of hope.

Every rheumatologist I talk to is positive about the future for JA. We have come a long, long way. Once you find the right medicine, or combinations of medicine you can halt damage. Damage that is often irreversible.

I was diagnosed in 1990. Kids diagnosed in that same year often ended up with extensive damage because there were no new treatments. Since 1997 the biologics have grown and expanded and today there are so many more options, so much more hope.

So fear? Yes, it’s ok to be afraid. But it’s not ok to let the fear stop you. I was fearful at times and you will be too, but we must all work hard to replace fear with hope. We must keep trying new treatments and combinations until that magical one works, or that new one comes down the research pipeline.

JA is a terrible disease. But the hope we have today is far more than the hope the past generations had.  We have more options, more information, and better treatments. We have a ways to go, but we have also come so far, we can’t let the fear halt us now.

Jack Canfield said it best, “Everything you want is on the other side of fear.”

You can join in on the discussion of this issue at:

http://www.creakyjoints.org/forums/forum/general-discussion/

19
Aug
2014

Envious

 

If I had to describe one word that would sum up my feelings about social media this past week it would be “envy.”

OK, you find that strange, well, so do I, but still “envy” is the word and I don’t mean in the resentment, bitterness, and green-eyed monster sort of way. I mean it in the coveted, desired, aspire, and wish for kind of way.  I am not an envious person by nature. I have a wonderful full life. But even though I have all these good things in my corner, some new Facebook posts last week made me wish for one more thing.

I usually go on Facebook at least once a day.

That’s when I saw the post.

All over Facebook were posts about the Ice Bucket Challenges for ALS. Amyotrophic lateral sclerosis affects the brain and the spinal cord. Motor neurons degenerate and die which makes it increasingly difficult to move muscles. This is one unforgiving disease. It is also misunderstood and gets little attention compared to some other diseases. Most of us know ALS as Lou Gehrig’s disease.

Celebrities and Facebook friends were participating in these Ice Bucket Challenges to raise money and awareness for ALS. You dump a bucket of ice water over your head and record it on video and post it on your Facebook page. Then you challenge others to do the same within 24 hours. If they take the challenge they donate $25 to ALS, if they don’t take the challenge they donate $50 to ALS. What a great idea! What a worthy cause!  Either way money goes to a very important cause.

On August 17th the ALS Association announced that it has received $13.3 million in donations from over 250,000 people and the challenge continues to grow. Can you imagine the amount of research this money will fund? The help and hope it will open up for all of those who suffer?

President and CEO of the ALS Association said this past weekend: “Never before have we been in a better position to fuel our fight against this disease. Increased awareness and unprecedented financial support will enable us to think outside the box.”

These words are music to the ears of anyone who suffers from any serious chronic disease.

I loved seeing so many people who can make a difference, people who just want to give back and help others, celebrities and real people working together for a very important cause.

And yet, I was envious. Soon there were Facebook posts about why hasn’t someone thought of something like this for JA kids or RA families. Why didn’t I think of this? Why didn’t one of the many charities for arthritis think of this? Why didn’t you who are reading this think of it? But it’s never too late!

When I became an advocate for JA Kids almost two years ago I was very naive. I thought celebrities would gladly lend their name and their fame to helping create awareness for JA Kids. The photos and stories of these children are so heartbreaking who wouldn’t want to help them.

One of my close friends offered to put together a video for my Facebook page, Christine’s Kids.  He worked tirelessly to create a wonderful video. Sugarland gave me the rights to use one of their songs, Lynda Hayes gave me the rights to one of her songs. The results is six important minutes that tell the story of kids with Juvenile Arthritis who suffer on a daily basis and are misunderstood by the average person.  https://www.youtube.com/watch?v=ds1sVc85QtM

 Very few of my media contacts wanted to talk about JA Kids. My good friend Deborah Norville spoke up, did a PSA and let us use her name and photo to help the JA cause. Al Michaels and Wayne Gretsky sent messages of hope and photos to Christine’s Kids.

But Deborah’s TV Show, Inside Edition was not interested in a story about JA Kids. Dr. Drew was not interested in a story about JA Kids. The Talk was not interested, Dr. Nancy Snyderman on NBC was not interested, GMA wanted happy giggles, not tears and the list goes on.

The reasons? It’s not a “sexy disease,” “people don’t understand that kids get arthritis,” “it’s an old person’s disease, we need young audiences,” “our television viewers are interested in reality and sexy, controversial TV”

Many in the media just don’t think arthritis is really a serious disease. They don’t believe that these kids are bullied. They are not aware that there are only 200 Pediatric Rheumatologist in the US to treat 300,000 JA kids. They know their grandparents got it when they were old, but kids? It must just be growing pains. If you explain Rheumatoid Arthritis–and that is what Juvenile Arthritis is–is a disease of the autoimmune system, affecting almost every part of the body, attacking major organs, and is totally different and much more serious than regular old age arthritis, people look at you like you are talking a foreign language.

So when the ALS Ice Bucket Challenge captured the imagination of the Social Media world I was glad for ALS, but I was also envious that Juvenile Arthritis wasn’t getting this same kind of attention.

Threads started on Facebook about doing something similar for JA. Something, anything to create more awareness and understanding and of course raise money for that much needed cure.

So in this instance envy is a good thing because it gets me thinking…what more can we do to let the world know about these special kids?

I guess just keep on trucking…keep asking. The media might think that JA is not be a big enough disease for television or not important enough for major print but to me and the 300,000 kids that live with it and their families who suffer watching them suffer, it’s a huge and very serious disease.

Every kid deserves a childhood. Juvenile Arthritis robs kids and teens of their childhoods. That in itself is enough reason to want to make a difference.

Congratulations to whoever thought of the ALS concept. Yes, I am envious (yet happy for you) at all this attention for an important and devastating disease. I can only imagine the hope this campaign brings to all of those who suffer. Much needed and deserved hope.

So in this case, envy is not a negative, but a motivator that translates to a constructive form of envy. It’s like adding supercharged gas to our advocacy engines.

Come on, JA/RA community, let’s start thinking of what we can do. Come on The National Arthritis Foundation and all of the many other arthritis organizations, let’s brainstorm together. Let’s turn envy into awareness for our kids!

Bill Gates Pulls The Cord!

And Bill Gates, Oprah and Justin Timberlake, you were all kids at one time, think about your childhood. Think about it being taken away from you with Juvenile Arthritis. Think about a life in pain with doctors, hospitals and medicines taking up times you should be outside playing. And think about being bullied and made fun of, reprimanded by teachers because you couldn’t keep up with other kids, play sports or go to school dances.

 

OPRAH TAKES THE CHALLENGE!

 

It’s hard enough to be a kid, but a kid with Juvenile Arthritis whose parents watch them suffer as they administer strong medications in hope of getting relief. And who live in constant fear of what the future holds for their children.

I challenge you all, celebrities, politicians, rheumatologists, arthritis organizations and social media friends to come up with a challenge for Juvenile Arthritis.  Let’s take away the mystery and misunderstanding and replace it with hope and awareness.

 

Justin Timberlake Brings along some friends for the ALS Ice Bucket Challenge