Wow! I haven’t posted in a while. I’m back and forth traveling right now; it seems like all I do is pack, unpack, and re-pack. I plan to get back to a more consistent blogging schedule next week or the week after.
I recently read “Take Me Home from the Oscars” by Christine Schwab. Christine is a fashion maven who has appeared on a variety of daytime news shows. She also has rheumatoid arthritis.
In my absence from blogging, I am excited to have Christine here today, talking about her book.
You chronicle your journey with RA in your book, but could you please provide a brief summary of who you are and your journey with RA for my readers who haven’t read the book?
CS: I have worked my entire career in the beauty and fashion business. Reaching the top of my career I was working on television, sharing fashion and beauty trends with viewers and doing make-overs. Often I would be on two shows a day like Oprah and Live with Regis. I married my dream man during this time. My life was perfect. Then one day working in NY I started having severe pain in my feet. I chalked it up to over doing it on the tread mill. It turned out to be RA. I was shocked and devastated because I perceived the disease to be for older people. How could someone whose life was about health and appearance get this disease?
Your story is like so many others. We might not all be TV stars, but so many of the women I’ve talked to, including myself, were tried and true Type A-er’s prior to getting sick. How did you, and how do you continue to, balance your work and health?
CS: I took one day at a time. It was the only philosophy that really worked for me. If I had a week of TV shows coming up I couldn’t worry “would I be healthy enough, could I manage my pain.” I simply had to not over think because that would aggravate my RA. Worry is our worst enemy. Plus my Doctor, who I dedicate my book to, told me over and over that I could do this. I could get through what I needed to do for my work and family and I had to hang on because there were a lot of news drugs in the pipeline for arthritis. He kept the “hope” carrot dangling in front of me and it worked. A quote from my book is “what you can't control, manage” and I so believe this to be true.
My Doctor did get me in a research program at UCLA and I went into remission 11years ago.
What has been your most difficult experience with RA overall?
CS: The pain. When you hurt, it wears you down. It permeates every part of your body. Chronic pain is so hard to deal with. For me, a balance between anti-inflamatories and pain Meds worked best to get through the really tough days.
My secret was to tell myself tomorrow would be better.
What has been your most difficult experience dealing with RA given your line of work?
CS: My work looks glam but in reality there is a lot of running around finding clothes, long hours on your feet and stress over making it all come together on TV. Combined they cause flare ups. That and trying to hide a weight gain and moon face from steroids on TV. It’s interesting how some people are very observant and others totally unaware.
What made you decide to write a book?
CS: I have written two fashion books before. I love writing. After hiding my disease for twenty years I decided I needed to help change the negative and out-dated perception of arthritis and the best way to do that was with a memoir showing the juxtaposition of my life of glamour vs. my life as a research patient. The contrast staggered me and I was in the middle of it. I felt it would make a great story about overcoming adversity and based on the response from readers, it has.
What is the significance of you writing it so long after your diagnosis?
CS: I could barely deal with my health for a long time let alone write about it. I needed to get perspective on the disease. Writing any earlier would have been a different book. This book will help people because I learned how to help myself.
What is the significance of the title of your book, “Take Me Home from the Oscars”?
CS: I had covered the Oscars for TV many times but on this particular evening I was a guest with my husband in an 11th row seat. But my arthritis flared and took over. I open this book with this event. I don’t want to give it all away! But I may have been the only person to leave the Oscars before they began.
You are diagnosed with RA early in your marriage to your husband Shelly. Do you have any secrets to marital success when chronic illness (or specifically RA) is thrown into the mix?
CS: Some will disagree, but you can’t share every ache and pain with your mate. I don’t care how much you love each other or how close you are, you can’t let a chronic illness take over your life. You have to have some break time and so does your mate. Nobody can listen to complaints or talk about health all of the time. Nor should they. Be interested in your mate. Talk about him. It will allow you to forget about yourself for a bit.
In your book, you talk about the horrors of Prednisone (which many of us are aware of) and Methotrexate lung disease (which I had never heard of, despite being on Methotrexate myself). What medications/treatments have you found that have worked for you?
CS: Prednisone has severe side effects but it also got me through work when nothing else would. It saved my career many times.
Methotrexate put my arthritis in remission even though it attacked my lungs. The drug I tested in the research program was Enbrel and it worked for me. Eventually enabling me to stop the use of any other drugs.
You talk a lot about your experience in drug trials. How important do you view drug trials being for RA patients?
CS: VERY! You don’t go into a drug testing program unless you are out of choices. They are scary. But they advance research that will help millions. I went in full of hope. I came out with relief.
You also talk about your experience with multiple rheumatologists. Would you recommend that other RA patients “shop around” for doctors and/or seek multiple opinions?
CS: Don’t stop until you find a doctor that offers you hope. That NEVER gives up on you. That believes they can help you. Don’t settle for anything else. It’s your body and your life.
You were diagnosed with RA before it was “cool”. What do you say to people that have many more drugs available than you had, and still cannot find relief from RA?
CS: Never give up. Keep your arthritis under as much control as you can to protect your joints and keep aware of what drugs are being tested and when they will be ready.
I hear too many people say they’re afraid to try new drugs. Balance the quality of life. If you don’t have a good quality now, why not try something new? I am the long term study for Enbrel. People ask me if I’m afraid. My response is I have my life back. Nobody knows what the future holds. I will never look back and regret being the first. I’m loving life.
What advice would you give to young(er) RA patients like me?
CS: Be proactive. Keep your inflammations down. They cause joint problems the longer they’re inflamed. Try new combos of Meds. Don’t be afraid. Find the right doctor for you. You must take the lead and be involved in your care and treatments. Don’t take no for an answer. Persevere.
What kind of work are you doing, aside from writing your book, to raise awareness about RA?
CS: I am a spokesperson for the National Arthritis Foundation. We are doing some exciting projects together. I have a Facebook page. I Tweet. It keeps me in touch with arthritis.
How is your health at the present moment? How do you envision your future (in general)? With RA?
CS: My health is great. I hope to continue down this path of wellness. But whatever happens, I now know I can deal with it. I envision helping millions deal with arthritis. I envision changing the perception of arthritis so that people will know there are good treatments available. Arthritis today is not the same as it was for our parents and grandparents. And this is only the beginning... More new drugs are on the way.
Thanks, Christine, for sharing your story, and for taking the time to answer my questions in such a thoughtful manner. “Take Me Home from the Oscars” is available on Amazon.com.
Christine is also the author of “Quickstyle” and “The Grown-Up Girls Guide to Style”. Visit Christine at ChristineSchwab.com.
*I received a free copy of this book from the publisher, Skyhorse Publishing, Inc. However, my choice to have Christine as a guest blogger was my choice, and had to do with my opinion of the book.