Guest post: How I became a JA advocate – Christine Schwab

[Note: I would like to welcome the one and only Christine Schwab to MyLungsMyLife. For those who haven’t heard of Christine, she is a woman who is looking out for all the JA kids out there, helping to raise to profile of the disease, sharing the experiences JA kids have both the good and the bad. Christine attended the Juvenile Arthritis Conference and met a whole load of the young people she has been advocating for and I think would have been quite amazing for all involved. Christine, herself, has RA and knows the difficulties people with Autoimmune Arthritis face and this makes her awareness campaign even closer to her heart. This post is Christine’s journey into JA advocacy!]

I was diagnosed with RA as a young woman in her prime. My television career as a fashion/style reporter was growing I was appearing on Oprah, Entertainment Tonight, The Today Show and Live with Regis and Kathie Lee and then Kelly as a contributor. I had just married my dream man and life was perfect. Until one September day when I was working on a week of makeovers for Live in New York and I started having pain in my feet. I thought I had just overdone and purchased a pair of sneakers for relief. But no relief came. The next day I had a foot massage. No relief. By the end of the week I was in severe pain that moved up my legs. When I got back home (I lived in LA but commuted to NY every month for work) I went to an orthopedic, thinking I had damaged something in my feet. The X-rays were normal, the Orthopedic said, shaking his head in confusion. From there I went to two more doctors without resolution. “I don’t know what is wrong but I think you should see a Rheumatologist,” one doctor said. I didn’t even know what a Rheumatologist was but when I went they took a lot of blood, pinched my toes and feet until they pulsated and said, “Nothing is showing up in your blood.” By this time I was so frustrated because the pain was getting worse. “There is a young, cutting edge Rheumatologist at UCLA that I think you should see,” the last doctor suggested.

My husband and I made the trip to UCLA and met yet another doctor. More squeezing of my joints, more blood work and lots of waiting. “Your blood work is not showing anything Christine, but I am going to make an educated guess and say you have Rheumatoid Arthritis.” All I heard was the word “arthritis,” visions of old crippled people filled my head. Years of watching Arthritis telethons on TV with my mom frightened me. And the tears flowed. My husband and the doctor were elated, a diagnosis had been made. “It’s not uncommon for the markers of RA not to show up in blood work in the early stages,” the doctor said, oblivious to my tears. He put me on an anti-inflammatory and said he wanted to see me in three weeks. I left devastated. How could I be a fashion reporter on TV with arthritis? My husband left pleased that it was only RA. Neither of us understood the devastation of this disease, but we were soon to find out.

My seven-year RA journey was all over the map. After a few months at UCLA my blood work confirmed the RA diagnosis. Medication after medication was prescribed. The ones that worked on the inflammation didn’t agree with my system. It was the worst roller coaster ride of my life. The only place I found relief was in bed and as I pulled the sheets over my aching body the touch of the soft cotton fabric hurt.
I continued my television work with the help of determination, medications and my doctors’ hope. “We just have to keep you going Christine, there are some new, exciting meds in the research pipeline,” he said as he wrote yet another prescription.
And then, seven years later the first biologic became available at UCLA and I was placed in the research program. I was elated. A cure at last. Hope made me oblivious to all the side effects, the notices about the patients who developed cancer, the ones who died.

The nine months in the research program without any medications other than the newly tested drug was even more of a roller coaster ride. At first I felt great, having stopped the seven years of toxic medications. Then RA roared it’s ugly head again and my hands started aching and showing damage. If I quit I wouldn’t get the medication for years and so I stayed, sure that I was on the half dosage and once I got the full dosage I would be home free.
As it turned out, when the program ended and the results were released I had been on placebo the entire time. Proves what attitude can do. The full dosage awaited me because I didn’t quit as many other participants did. Two weeks after my first injection of the actual medication I went into joint pain remission. I had my life back. All the hope my doctor promised materialized.

​For twenty years I kept my RA secret. Television and arthritis just didn’t fit my job description. Fashion and arthritis just didn’t work. I knew if word got out I would lose my job. When I took high dosages of steroids in order to work, my face would swell and I would gain weight. But then my fashion expertise came in handy. I altered my hairstyle and dress and people barely noticed. Except when a producer of Live said, “Christine, are you on steroids?” “Why would you say that?” I replied. “Because my sister took steroids and her face looked puffy like yours,” he said. “All the plane travel has taken its toil and I have a lung infection and yes, I am taking steroids,” I said. It satisfied his inquiry and I was able to keep my secret and my job.

​I had published two books on fashion and was thinking about my next book. What would I write? I jotted down many ideas but nothing seemed important until I realized the book I wanted to write was about arthritis. I had my life back. The new medicines continued to come out of the research pipeline. I needed to share the hope, the breakthroughs, and the journey.

The story poured out of me as fast as I could type. Take Me Home From The Oscars; Arthritis, Fashion, Television and Me was published in 2012. Somewhere along the publicity journey I connected with the Arthritis Foundation and learned that kids, teenagers, and young adults got arthritis. Not the Osteo arthritis of athletes or the normal age related wear and tear on joints, but the autoimmune disease that hospitalized me several times with life threatening complications. As I learned more about the kids and how they were taking the same toxic, powerful medications that I had taken, my focus changed. Adults can understand the disease. Kids? How did they understand? How did parents deal with such an uncertain disease in their children?
​The more I heard about Juvenile Arthritis, the more my heart broke. A shortage of Pediatric Rheumatologist, mis-diagnosis from regular doctors, bullying in school, teachers calling JA kids “lazy” and “spoiled” because they couldn’t’ participate in school activities. Doctors telling moms their toddlers were “slow and would walk when they wanted.”

​It wasn’t a conscious decision to focus on JA, it just evolved organically, as if it was meant to be. Facebook post from worried, stressed and uninformed moms who read my book contacted me with question after question. I understood, I had taken every medication and combination of medication they were concerned about. I could answer them in layman’s language. Been there, done that. I could share what I learned about being aggressive with treatments, talking with doctors and managing health care. Soon I started a page for JA Kids. “What should I name it?” I asked a writer friend. “Keep it simple, ‘Christine’s Kids’,” she replied. “Keep it personal and honest.”
​A year and half flew by and Christine’s kids grew and grew. Often having 20,000 people viewing the page and reading the posts. I spoke at events about JA and the more I spoke the more I realized how few people even know, just like I didn’t know, that kids get this disease. The more I found out, the more determined I became to make a difference, give these kids a voice, create awareness among the unaware.

​My husband commented one evening while we were watching TV, or rather he was watching and I was on my iPad, “Christine, you are on that thing ALL the time,” he said. I walked over to him and gave him my iPad, open to the Christine’s Kids page. “Read some of the stories, He scrolled and read for about 20 minutes before he looked up and said, “This is the most important work you have ever done.”
​Am I consumed? I am.
​Am I passionate? I talk to everyone who will listen.
​I feel as if these kids and their families are part of mine. I feel their pain, their frustrations, and their fears.
​These kids deserve a voice. I am honored to be one of those voices. My husband no longer comments about me slowing down. He knows it’s useless. He understands. I can’t slow down, I have 20 years of silence to make up for.

[I would like to thank Christine once again for writing this post on how she got into JA awareness, and with Christine’s help, I hope that JA will not stay a secrete conditions that only people directly affected by JA and their family and friends know about.
Why don’t you follow Christine’s Facebook page Christine’s Kids and I would definitely recommend checking out her site! For anyone who would like to buy Christine’s book, just follow the Amazon link on her website.]

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