You guys, I am soooo excited to share this with you! A few weeks ago, I noticed that one Carla Jones was following me on Twitter. The name seemed really, really familiar. Upon taking a closer look at my Kindle App on my phone, I quickly realized why.
Carla Jones wrote an e-book about her mother’s battle with rheumatoid arthritis and how, sadly, complications from the disease caused her mother’s death. Carla is so, so very brave for writing about this, and is using her mother’s story to promote better understanding of the severity of RA.
As a loved one of someone who suffered with and died due to RA, I thought that she would be able to offer a unique perspective on my recent focus on our support systems. I am so, so thankful that she agreed to answer my questions.
So without further ado, enjoy this awesome interview!
In the introduction to your book, you said that you would want to know complications associated with RA if you were diagnosed. Do you think that organizations should be making this a goal of raising awareness?
Yes, and I’m not alone. I’ve heard this comment from one of leading spokesperson for RA, Kelly Young, founder of The Rheumatoid Patient Foundation, as well as an employee from a well known arthritis organization. Patients need to have a balanced education on positive interventions, yet need to understand the negative attributes associated with RA. The online arthritis community of patients are the true forerunners in this arena. I know that as we work together, that eventually, people will learn how to better take preventative measures to avoid serious complications from RA.
Your mother seemed to be a very positive person. Were there ever any moments where you could see a change in that due to her illness?
Were there ever moments where you had to stop being a dear daughter and instead use tough love regarding your mother’s illness and treatments? If so, how difficult was that for you?
She was on Enbrel, Humira and Remicade. Unfortunately, they did little or nothing to slow her RA.
Were there ever days where you considered alternative treatments, like massage and healing touch? Why or why not?
I asked her if she would consider massage therapy. Since her frame was incredible frail and brittle, the thought of anyone rubbing her skin, turned her off. She was concerned that a therapist might accidentally break one of her bones.
If you could offer any advice to people in a caregiver/loved one situation, what would you say?
Her faith was her life-blood and sustained her. God transformed and was the center of all areas of her life. Studies show that those with faith in God fare better than those that do not. This could be mentally and or physically depending on the person.
Was it difficult to write about your mother’s passing, or was it more therapeutic?
Yes, he was very supportive and understanding. The two were the best of friends. He was in constant communication with the three of us. My Dad was his usual positive self and always had helpful advice for my Mother through every stage of her decline. Her death was extremely difficult for him.
Do you have any advice for newly diagnosed people and their loved ones?
Get informed: Seek out well rounded education on RA. Don’t limit yourself to whatever information your doctor is able to share with you. He or she has a limited amount of time and knowledge. Read up on RA and ask specific questions suitable to your symptoms. Get support: Online support groups for RA are wonderful!! I’ve had nothing but positive feedback from those involved in on the social media sites. Getting empathy is so important when you are struggling with any difficult situation and I’ve met such caring people from this source including you! [YAY!] I find your blog information to be helpful, informative and personal. I respect and applaud you for raising awareness to Still’s disease and RA. Another person to connect online with would be Kelly Young, aka “RA Warrior”. Her blog contains an array of helpful information for those fighting the disease. She’s a dynamic, educated woman with thousands of followers, including doctors. I met her on a trip to Florida last year and I now have the extreme privilege of calling her my friend.
In closing, I’d like to note that you are donating all your proceeds from the sales of your book to the Arthritis Foundation. I think that’s pretty kickass, pardon my French 🙂
Thank you kindly for the compliment, Kirsten. It’s the least I can to do contribute to those fighting this precarious disease. My hopes are that one day soon, a cure is found and I believe it will happen in our lifetime. It was an honor being a guest on your blog. You are an inspirational support for many.
Thank you SO much Carla for agreeing to do this interview, and for your kind words 🙂 It has truly been an honor to be able to learn more about your relationship with your mother, and how you handled this very tough time in your life! I hope that your mother’s story continues to touch the lives of others as it has touched mine.