Personal Reflections: Farrah's Story Hits Home

My mom and I watched Farrah Fawcett’s documentary the other night and much of it hit home with me. It was painful to watch since my grandfather died as a result of an awful battle with cancer. While my disease is different, I can relate on a number of levels to Farrah.

I, too, have endured much pain and was even prescribed Methotrexate (which originated as a cancer drug) as a teen. I will never forget every Wednesday night while I watched Beverly Hills 90210 trying to disguise the pills in Oreo cookies as if I would somehow forget that I was taking them. And it was never long before I found myself throwing up in the bathroom due to the effects of the medication. It was a horrible feeling and a horrible period in my life.

I could also relate when Farrah said she doesn’t recognize her body anymore as a result of the disease and treatments. While I’ve had juvenile rheumatoid arthritis most of my life, I have always felt like an “alien” in my own body. Some days, I refer to myself as a 90-year-old trapped inside a 29-year-old’s body. But then I look at my neighbor who is about that age and I realize I’m wrong—I’m in worse shape, crippled by the disease and almost always in pain. I envy her as I watch her kneeling in her yard pulling weeds and trimming the bushes. I haven’t been able to kneel since I was about 7, and I’ve never been able to tend to our lawn. It’s sad when even the most mundane chores seem desirable simply because you can’t do them. Then the self-pity kicks in even more and I start to resent that I will likely die having never had the chance to mow the lawn, or ride a bicycle, or even walk down the aisle to meet that knight in shining armor. (Did I mention most guys can’t look past the wheelchair?)

And while most days I try to focus on the bright side of life, the tough reality of living with arthritis that so many people are unaware of is one that I can never ignore.

Give Children with Arthritis A Voice

As part of National Arthritis Month, which takes place each May, I am asking that you help me in my mission to create awareness of a disease that is often ignored by the mainstream media--juvenile arthritis.

“Imagine waking up every morning so stiff from joint pain that you are barely able to crawl out of bed. You hobble your way to the tub to fix a hot bath—after all, it’s the only thing that will help your joints to loosen up. After taking a bath, your stiffness has lessened, leaving you with just the normal aches and pains you’re faced with daily. Today the pain may not be so severe, but tomorrow it could be much worse. It’s the type of pain that makes everyday tasks quite difficult—sometimes even impossible. All you want to do is escape. Going to bed has become your favorite “activity,” just as long as you don’t lie there thinking about the day ahead.

The situation I just described might sound like the life of someone in his or her golden years—perhaps even your own grandmother or grandfather—but it’s not. It is the life of more than three hundred thousand children and teens living with juvenile arthritis.”

The above excerpt was taken from Chapter 2 of my recently released book Juvenile Arthritis: The Ultimate Teen Guide. The book not only shares the stories of teens and pre-teens living with juvenile arthritis, but also serves as a comprehensive self-help guide for individuals who have the disease and their families.

As part of National Arthritis Month, which takes place each May, I am asking that you help me in my mission to create awareness of a disease that is often ignored by the mainstream media. Please give those of us who have juvenile arthritis a voice in our quest for better treatments and a cure. So many members of the public are unaware that children can get arthritis and that it can severely impact our mobility in addition to causing much pain. And sadly, despite what commercials show, aspirin is not a cure or even of much help to those dealing with juvenile arthritis. In fact, many of the treatments now on the market only work for a small percentage of patients and many stop working after several years of taking them.

Personally speaking, over the years, arthritis has restricted more and more of my mobility and I now rely on a wheelchair to get around. My goal in life is to help others become more aware of this debilitating disease so future generations of children do not have to experience all that I have went through and can live their lives without limitations. I hope that you will find it in your hearts to stop allowing this disease to go unnoticed and ignored by sharing our stories.

Kelly Rouba on Blog Talk Radio

On Monday April 13th at 1pm I will be chatting with Tamara Walker, R.N., host of the Ask MomRN Show on Blog Talk Radio. Listen to me live by clicking play below.

Feel free to call (347) 945-7957 with your questions or your stories. I'd love to hear from you!

For more information about the Ask MomRN Show, click here.

Juvenile Arthritis: The Ultimate Teen Guide

Kelly just released her debut book, Juvenile Arthritis: The Ultimate Teen Guide in which she shares her own story and the stories of various kids, teens and young adults who suffer from arthritis. Kelly's mission was to write a book that kids and families could read to find answers and to feel like they are not alone in the world.

In addition to Kelly's story, she features Amanda White, a college freshmen who suffered through her figure skating competitions, Shaun-Marie Robbins, a new mom who went off all of her medication while pregnant with her son and Kristen Delaney, a teenager who had to travel 4 hours just to see her doctor showing that there is an immediate need for more Pediatric Rheumatologists. The book also features Seth Ginsberg, fellow arthritis sufferer and founder of CreakyJoints.com who honored Kelly with their CJ Superstar-Volunteer of the Year award in 2008.

Supporting the personal stories are medical research, statistics and Internet resources for families. Maintaining a fitness routine is also important for individuals with arthritis. From yoga to the Nintendo Wii, there are many options that are gentle yet affective for staying in shape. Eating healthy is also stressed with dietary options like Gluten Free eating or herbal supplements.

To order your copy of Kelly's book, visit Amazon.com. If you're already purchased and read the book, feel free to leave your recommendations at Amazon for others who are looking for a helpful resource on Juvenile Arthritis.

Show your support for Kelly by saving and posting her badge(shown above) on your website and link it to the Amazon site.