Carla Kienast: 'Because I Can't Keep Silent' About RA
She doesn't beat around the bush when it comes to taking a stand. Carla Kienast is a former corporate communications professional with more than 25 years of experience working with major corporations. Since being diagnosed with rheumatoid arthritis (RA) in summer 2008, she's undergone 20 surgeries, which she describes as "four joint replacements, two spinal fusions, and multiple soft-tissue procedures, including two rotator cuff surgeries — plus epidural steroid injections."
On her blog, "Carla's Corner," she opines about those surgeries and addresses a wide variety of other topics, often with characteristic "Carla" humor: "Learning the names of all your joints in that human anatomy class is finally paying off," or "You may finally find out if enough X-rays will make you glow in the dark." She also jokes that people who first meet her have no idea she's "half titanium."
She's also very certain about one thing: "Without my new hip and knee I very well might be in a wheelchair today. Instead, I travel a lot, write, and live my life."
Carla shared more in a telephone interview with HealthCentral.
HealthCentral: Of all the challenges you have faced with RA — and you have faced your share — what has made you feel most empowered?
Carla: I think the thing that has made me the happiest is finding a treatment that works. I’ve been on more than a dozen treatments during the 10 years since my diagnosis, so I’ve “failed” on lots of them. It’s a major decision to change treatments and then you start a new regimen with so much hope. It can take a few months for a treatment to work, so you’re undergoing treatments — and paying copays and suffering side effects — without any assurance that things will be better. When a treatment actually works, it’s amazing! I’ve been on my current biologic for almost two years now — the longest of any that I’ve tried — and things continue to go well. It’s great when I’m able to share this kind of success with others and let them know there are treatment plans that help.
HC: What do you think people who don't have RA misunderstand most about this disease?
Carla: That’s a hard question because it’s a very misunderstood disease. The obvious answer, of course, is that most people don’t know the difference between RA and osteoarthritis (OA). These are the people who sometimes say: “Oh, I have that (RA) in my elbow.” They don’t understand that it’s a systemic, inflammatory disease, and not just normal wear and tear on joints like OA is. Beyond that, people don’t understand that RA is a very fickle disease. You can be perfectly fine, then the next week, day, hour, minute, you can be in so much pain that you can’t function. The other thing that isn’t always clearly understood, even by some people who have RA, is that it affects more than joints. It can affect your entire body including, eyes, cardiovascular system, digestive system, and more.
HC: Has there been anything at all that's been "good," or even in that realm, about having RA?
Carla: Truly the only thing good I can say about RA is that I’ve had the opportunity to meet some amazing people in the RA community, including:
Other patients and advocates who inspire me every day
Healthcare professionals who try to make life better
Dedicated people in the pharmaceutical industry looking for new treatments and cures.
HC: How do you feel about your blog right now? You've certainly received some well-deserved kudos for it!
Carla: I started my blog to keep my friends and family up to speed with what was going on. It's also a personal journal of my journey. Over the years it’s grown far beyond that. I think that what keeps me inspired to write it is that I do hear from readers when something I’ve said has helped them. Sometimes we advocates and bloggers feel like we are talking to ourselves. Knowing that what we’re doing resonates with others is what it’s all about.
HC: If you could meet "rheumatoid arthritis" for a drink, what would you like to say to him or it? Go ahead and get it all off your chest (or out of your head). No holds barred.
Carla: How about: “I want a divorce?”
Realizing that a divorce, or even a separation, isn’t possible, I’d like RA to know that I’m not going to stop living my life just because it has decided to invade. I did have to give up my very rewarding, six-figure career and I am still really unhappy about that. That was also like giving up a lot of my identity, as well as a large source of income. More than anything, I resent RA for causing me to lose a career I loved. However, I would like RA — and other patients — to know that RA hasn’t kept me down. I fill my life with interesting work projects, lots of advocacy work, and loads of play and travel time with my husband. RA makes me plan more, and occasionally take it easier, but it hasn’t made me stop.