It’s been a while since we’ve shared a Fibro Warrior story here. This week I’m happy to share Dana Arcuri from the eastern suburbs of Pittsburgh, PA. She was diagnosed with Fibromyalgia in 2008 at the age of 44. She’s been married to her husband for 28 years and they have three kids (18, 21, & 25) and a white cat (Sabrina)
Tell us a little about yourself:
For over 29 years, I’ve been a licensed beauty expert specializing in esthetic skin care and makeup artistry. The highlight of my career was working for PBS backstage at the Pittsburgh Benedum Center doing makeup and hairstyling for Doo Wop ’50 where I met the Platters. Once I was diagnosed with Fibromyalgia, herniated discs, and advanced degenerative disc disease, my ability to stand long hours on my feet came to a screeching halt. Due to chronic pain, I resigned from the beauty industry in effort to focus on my health. After being home full-time, my passion for writing was reignited and I began pursuing freelance writing for income. In 2011, I became the contributing author of Inspired Women Succeed. From there, I decided to write my own Fibromyalgia memoir, Harvest of Hope: Living Victoriously Through Adversity, which shares how I nearly lost my life to severe interactions from harsh medications and how I gradually regained my health to live a higher quality of life. Writing one book led to writing two more, which were published in 2014 and 2015. In addition to writing, I also do public speaking on various topics ranging from my Fibromyalgia story, ADHD, faith, hope, nutrition, and wellness.
What lead up to your diagnosis (symptoms, dr visits, etc)?
I’ve had 30 years of low lumbar pain and ongoing back problems. In November 2006, for no apparent reason I experienced intense back pain, inflammation, and tingling/pain radiating down my legs all the way to my toes. I could barely walk or function, let alone work my beauty job. This led to medical testing, physical therapy, and a variety of medications. By January 2008, my condition became so debilitating that I went to a new orthopedic specialist who sent me for testing and physical therapy. The tests confirmed more degeneration to my spine and discs as well as more herniated discs. When I didn’t experience improvements with physical therapy, I suspected something else was wrong with me. I had excruciating nonstop pain all over my body, including my neck, shoulders, arms, legs, low back, and my body hurt when people touched it. My mom had been diagnosed with Fibromyalgia 15 years earlier so I asked her what the symptoms were. During our conversation, we both felt certain that I had Fibromyalgia so I made an appointment to see a rheumatologist. At my appointment, he stated that while I did have serious back conditions, my biggest health concern was Fibromyalgia. While I had no intention of taking pharmaceutical medicine, in 2009 when my pain became unbearable, I joined a six week fibro program and started taking Cymbalta. From there, my physical, emotional, and cognitive health declined to a high degree. My memoir goes into detail on exactly how hellish the ordeal was and that I hit rock bottom in November 2010 in which I nearly lost my life. The lesson learned for me is that I must be my own health advocate and educate myself about my condition. Also, based on my personal experience, I have discovered gentler, natural methods to reduce my pain levels and increase my quality of life using holistic wellness. Healing begins with us and there is hope for reclaiming our lives.
How did your family initially handle your illness?
My mom was very supportive and it was helpful that she was able to share with me her own Fibro experience. My husband has always been very supportive of my illness. He helps around the house with cooking, cleaning, grocery shopping, and so forth. My children were much younger at the time and they didn’t understand the dynamics of chronic pain. Gradually, they became more knowledgeable of how Fibromyalgia impacts my ability to do all of the activities that I had once enjoyed.
What do you feel is the most challenging aspect of Fibro?
That the average person doesn’t fully grasp how debilitating it can become and they think that because we “look” alright that it must mean we are perfectly fine. Of course, this is the furthest from the truth. An invisible illness can sometimes not validate what people with Fibromyalgia are actually going through and how much they may suffer.
Do you have any other co-existing conditions?
ADHD, which was officially diagnosed not once or twice, but three times. Hello brain fog! Other annoying conditions include an enlarged thyroid and multiple nodules, kidney stones, IBS, and my back condition.
What (if anything) have you found/ done that has improved your symptoms?
I’m heading into my sixth year anniversary of being medication free. I’m living proof that it’s possible! The holistic alternatives that have worked wonders for me are aqua therapy, professional massage therapy, topically applying pure essential oils to my body, soaking in a hot bathtub with Epsom salts and magnesium oil, prayer, and journaling. Cooking a plant-based diet using anti-inflammatory seasonings, such as turmeric and ginger root. Reducing animal protein from my diet since it may cause inflammation. Living a gluten-free and dairy-free lifestyle has worked well for improving IBS and overall gut health. Gentle stretching every single morning practicing my physical therapy exercises in my own home has helped to loosen up restricted muscles. The biggest self-help key for me is to NOT remain in bed, but to keep moving. Cleaning up my diet has dramatically restored my health, especially avoiding processed foods, fake foods, fast foods, artificial dyes & flavors, GMO, soda, and artificial sugars.
How open are you with friends & family about your illness & symptoms?
I am very open about my Fibromyalgia and symptoms with family and friends. However, it’s usually not a topic of discussion, unless I have a Fibro flare up. Interesting enough, I do get many friends asking me if I could talk to their family or friends about my Fibromyalgia and how I’ve reduced my pain level naturally.
Do you blog about your illness? If so, what inspired you to do so?
In 2008, once I resigned from the beauty industry to focus on getting better and managing my fibro symptoms, I started blogging about various topics to do with chronic pain. My friends inspired me to blog when they complemented my writing skills and said that I should write a book.
What is the best advice you’ve received regarding Fibromyalgia?
The best advice that I received was from a friend who is a holistic nurse. She said to not cover up my symptoms with medications, but to get to the root of the problem. Her encouragement and health tips spurred me onward to do as much research as possible into nutrition and holistic wellness. It opened a brand new door of healing, health, and hope for me.
What was the worst advice that you followed?
On the top of my list for the worst advice that I ever experienced was to follow my doctor’s orders when my gut intuition told me that something was terribly wrong. Our intuition is usually 99% correct and we should listen to that still small voice in us that can warn us, protect us, and keep us out of danger. While we can respect our medical professionals and their credentials, we must become our own health advocates, empower ourselves through education, and gain insight into our own health in order to make informed medical decisions. There is a time and place for traditional medicine, but it doesn’t need to be the first or only option when there’s so many gentler methods to increase the quality of life.
What is your favorite way to cope with your life as a spoonie?
For me, it’s to embrace my limitations and to not beat myself up over it. Instead of getting down or discouraged over what I cannot do, such as work a physically demanding job outside the home, I’ve become my own cheerleader to remind myself of the strengths and talents that I do have to make a positive difference in our world. By tapping into my special gifts, I can accept my limitations, not overextend myself, and focus on what truly matters most to me, which is giving other people hope and encouragement because our society most certainly needs that.
What is it that inspires you to keep going, despite your illness?
What keeps me going, despite my illness, is my faith. Authentic faith is being sure of what you hope for and certain of what you do not see. Faith is walking in the dark and trusting that there is a light at the end of the tunnel. Where there is faith, there is hope for a brighter tomorrow.
What is one thing you’ve learned about yourself since your diagnosis?
The biggest lesson that I learned about myself since my diagnosis in 2008 is that what didn’t kill me has made me stronger. With every trial there has been a blessing in disguise. Had I not been diagnosed with Fibromyalgia, I never would have resigned from the beauty industry. Had I not resigned from the job that I loved, I never would have pursued writing. Had I not pursued writing, I never would have become the published author and speaker who I am today. So you see, there is a higher purpose for our pain and it can be used in powerful ways to give others hope for whatever they are enduring.
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Take the time to educate yourself about all of your options for treatment. Build awareness about Fibromyalgia and gain more insight into this disorder. Become your own wellness advocate. What you eat does impact your pain level and symptoms so clean up your diet and focus on whole nutrition. Most importantly, do not give up on yourself or ever lose sight of hope!
Is there anything else you’d like the readers to know?
Give yourself as much time, patience, and extra tender loving care to grieve the person you used to be prior to this diagnosis. Grieving is like the ocean. It ebbs and it flows. There are times in which you may fully accept your new “normal” condition, but other times when you will miss so many aspects about your past, such as gardening, dancing, driving, working outside the home, and living independently without chronic pain. Let the tears flow. Crying is therapeutic and healing. There is no time line for grieving. Journal what you are struggling with and write where it hurts. Trust that you are not alone and don’t be afraid to reach out to others for help or support.
I also want to mention that while my Fibromyalgia diagnosis was confirmed by two doctors, neither doctor tested me for Celiac Disease, which has over 300 symptoms quite similar to Fibromyalgia. Very often, traditional medicine neglects to consider what people are consuming, but I’ve learned that our diets play a huge role in our health and pain levels. Many individuals who suffer Fibromyalgia also have a sensitivity to gluten (wheat, rye, barley, and oats). Once I discovered my gluten sensitivity and gradually eliminated it, I slowly reduced my pain and disabling symptoms. I’m not 100% better, but there’s been significant improvements since I’ve been gluten-free for five years.
If you enjoyed Dana’s interview, be sure to connect with her. Check out her blog at http://www.danaarcuri.com/ and visit her on social media: