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?
Most definitely. I think it’s great that many arthritis support groups and organizations have a positive approach to a life dominating disease, such as RA. However, [I] strongly believe that patients need to get a well rounded education, on the multiple complications that can accompany rheumatoid arthritis.
Or, to put it another way, do you feel that sometimes organizations put too much of an emphasis on the positive, avoiding the negatives of RA and like diseases?
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?
Her continual optimism was forged by her faith as a Christian. Seeing past the physical to the spiritual core of every situation enabled my Mother to experience hope, in a person; not a circumstance. This spiritual vantage point allowed her to keep going mentally and emotionally. Alongside any chronic illness, depression and anxiety are present. Thankfully, she made a daily choice not to allow these traits, to dominate her attitude.
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?
Yes, my sister and I needed to be hard-line advocates on a consistent basis, in order to aid my Mother at every turn of her treatment. Ultimately she made all the choices about her care, but we did our best as a team to investigate all treatment options beforehand. The biggest challenge our family faced was getting her a proper diagnosis and regulating her excruciating pain. Due to the advancement of her disease, her pain was difficult to get under control. Frequently my sister and I would question the doctors about switching or upping her pain-killers. This was a terrible, ongoing problem. As she lay there, I remember literally seeing the tormented waves of pain wash over her face, in spite of the fact that she was pumped up with high doses of narcotics. It was a terrifying and helpless feeling. One E.R. nurse told us that she had never seen anyone in the E.R. taking so many narcotics and functioning as normally as my Mom.
Were there ever moments where you felt taxed and worn down by caring for your mother? What are some ways that you handled the stress and pressure that go along often with being a caregiver?
Thankfully, she had help from many nurses and nurses aids so I was not alone, for the last two years of her life. There were periods of feeling completely overwhelmed with taking care of my Mother but, I knew she needed me and I was going to be there for her.
Prayer helped me through this long dark period, for it is the number one way I handle stress in my life. Conversing with God and reading the Bible put my circumstances into a healthy perspective. A verse that aided in my stress: Romans 8:28 – And we know that in all things God works for the good of those who love him, who have been called according to his purpose. This one simple verse was a huge comfort for me. I also distinctively recall sitting on my couch and just thinking the words, “Trust me.” Sounds far-out and bizarre to some, but I know this was God’s way of redirecting my thoughts back to Him. Talking things out with my family and friends helped immensely. Where there is understanding, there is validation, after validation, peace follows.
I have seen you list several medications in your book, but no biologics. Was your mother ever on those? If not, do you ever think things might have turned out better if she had been?
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?
I would tell them to surround themselves with empathetic, positive people. This may mean family members and or a support group. Take care of yourself! Don’t feel like your loved one solely depends on you to do everything for them. Learn to take time out daily for relaxation to get your mind on something you enjoy.
Your mother became pretty religious during the course of her life. What kinds of effects do you think her faith had on her illness?
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?
It was a combination of both. Initially, I just started journaling about my relationship with her and of how I had missed her. As I have said before, she was my Mom but honestly was the best friend I ever had. Before she died, I read her a “Thank You” letter I composed, for all the many things she had contributed to my life. Afterwards I wrote a short note of the many ways she impacted my life with her faith and love, at her funeral. Then I started getting mad. Mad that she was not able to be saved and very well could have been. I thought there must be others people that have died from complications due to RA, even though I had never heard of such a thing. She can’t be the only one. I immediately felt the need to inform others of the reality of this agonizing death. At this point I began researching all that I could on the topic. It definitely was an emotionally draining process, having to relive the grief throughout the course of writing the book.
For those who haven’t read the book, your parents separated quite some time before her illness set in. However, your father seemed to be around a lot during times when you both must have needed him the most. How did he handle the situation?
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.