Google Celeste Cooper and you are likely to find her name associated with fibromyalgia, myofascial pain syndrome, chronic fatigue syndrome, chronic pain advocacy and the list goes on and on.
She is a retired Nurse, Advocate, Author and I am proud to call her my friend, mentor and my angel on earth.
It has now officially been 4 years since I first met Celeste through facebook. Like most friends, we have texted, emailed and chatted on the phone and like most online friendships we have not met in person. I am excited that in just a couple of days that is going to change. My husband gave me an airline ticket to go and meet her face to face. I thought that this would be a good opportunity to reprint my article I wrote for the NFMCPA about Celeste.
CELESTE COOPER, ANGEL ON EARTH
by Melissa Swanson, writer for the NFMCPA
Earth Angels have been described by Karen Elleise as ”intuitive, empathic, sensitive and giving often to a fault… They may be nurses, holistic healers, counselors or something similar by nature while also providing this very role in close relationships. They will be compelled, without quite understanding why, to seek out and draw to them friendships and love relations in need of counsel and healing.”
These definitions are important because there are no better words than inspirational and “Angel on Earth” to describe our Inspirational Patient.
In March of 2013. I was looking for positive, educational fibromyalgia Facebook pages. I found a page that fit both: https://www.facebook.com/celeste.a.cooper. I sent a friend request along with my blog and page information. The moment she sent her first message to me, I have been proud to call her my friend, mentor and “Angel on Earth.” I am excited to introduce you to Celeste Cooper.
Celeste Cooper is an author, blogger, free lance writer, fibromyalgia health expert at Sharecare.com, pain advocate and participant in the Pain Action Alliance to Implement a National Strategy (PAINS). She is also a patient participant in the Center for Practical Bioethics leadership initiative for patient driven pain research (Relieving Pain in KC) and guest columnist for the Kansas City Nursing News.
NFMCPA: Celeste, What was your life like before fibro?
CC: My life before fibro was not without pain. I had my first cystoscopy at age five, and I have had migraines and irritable bowel syndrome (IBS) since puberty.
During my school years, I ran track, bowled on a team, and played intramural volleyball. As a young adult, I was a competitive racquetball player and instructor, and a competitive downhill skier. I enjoyed playing golf, water skiing and many other physically active sports. Having joint hypermobility, I have experienced some significant soft tissue injuries. I thought I was invincible, and I wanted to fit in. It never occurred to me that what I experienced–muscle symptoms and recovery time or feeling sick to my stomach after activity–was anything different from my peers.
At age thirty, I returned to school as a single mom and began my love affair with patients and students. The bulk of my clinical career was as a board certified emergency nurse. I was also in charge of hospital-wide education and was an affiliate faculty for the American Heart Association. As an educator, I also wrote continuing education programs for the Missouri State Board of Nursing. I did many other things as a working adult, but none as fulfilling as caring for others.
NFMCPA: When did you first show signs?
CC: As a child, I envision myself in the fetal position in a chair during the holidays. I was a tomboy and loved to run and played baseball. But, I remember having cramps in my muscles, abdomen, and legs that would double me over. I have seriously low B/P, and I felt sick a lot. Was that fibro? I think it was signs of what was to come.
At age 17, I experienced a severe case of mononucleosis (mono), and I remember my mother being extremely worried that I would not recover. I am not sure I ever did. I have memories of always feeling tired and wired. As I look back, I realize that symptoms associated with ME/CFS set in after a visit to Lake Tahoe about the time of the Incline Village epidemic in the late 80’s. Was my immune system susceptible, or could it be other mitigating factors? It would be nice to know, but I doubt I ever will.
In my early thirties, I experienced a couple of significant injuries, a tear in both rotator cuffs requiring surgery (later a reconstruction because of hypermobility), a small tear in my trapezes muscle, and whiplash. Not long after, I began to experience daily body-wide pain, and my migraines escalated.
NFMCPA: What other co-morbids have been diagnosed?
CC: I have several co-morbid conditions: migraines, IBS, interstitial cystitis, ME/CFS, Raynaud’s, Hashimoto’s autoimmune thyroiditis, myofascial pain syndrome, restless leg syndrome, periodic limb movement, and bruxism during sleep. Though not usually considered co-morbid, Dr. Robert Bennett’s research (2013 Alternative Diagnostic Criteria) suggests that fibromyalgia patients usually have at least one other chronic pain condition. For me that includes esophageal spasm and dystonia, osteoarthritis, piriformis syndrome, moderate to severe spinal degeneration with spondylosis, and hypermobility syndrome.
NFMCPA: How did it initially change your life?
CC: I worked all my life with chronic pain, but it wasn’t until my brain turned to mush that my life really changed. I knew I would not be able to continue my nursing career or continue my work as a Legal Nurse Consultant. I had dealt with periodic insomnia all my life, but in my 40’s it became much worse and so did the brainfog. By age 50, I couldn’t remember where frequently used drugs were kept, so I had to face a harsh reality. I had to divorce myself from a career I loved. I did not know what was wrong with me when I walked out those hospital doors for the last time as a healthcare provider. I had no idea what was ahead of me. I only knew what I was leaving behind. I was terrified. I had remarried, and though our children were grown, I had no idea how we were going to pay our bills. We weren’t wealthy, but I did make a decent wage for over twenty years as a nurse. Financial stability was ending, also. I went without healthcare insurance when I needed it most.
NFMCPA: What changes have you had to make in your life?
CC: I became depressed, and I needed help. I began therapy with a psychologist who specialized in treating people with chronic pain and illness. I had biofeedback, hypnosis, and I learned to journal. The pivotal moment for me was when I read one line from my journal to my therapist, “I want to write a book.” He said, “Now you have the time.” There was just one problem, my brain had become dyslexic, my reading comprehension became slower than a snail on a good day, and I lose thoughts mid-sentence. If my husband says, “just spit it out,” or “I don’t know how anyone can lose something they just had in their hand one minute ago.”
A neuropsychological exam showed my short-term memory was 10% of what it should be for my age and education, though my IQ was unaffected. So, how was I going to write a book? Luckily, my PhD psychologist believed in me and agreed to co-write. No longer his patient, he encouraged me when I wanted to give up. We have written five books together. I have purpose again. Has my short-term memory improved? No, but I still write; it just takes more time and editors are worth their weight in gold. Has my pain improved? No, but I have improved my own coping skills as a result. My life took a new road, and I am humbled and enriched as a person because of misfortune.
NFMCPA: How is your relationship with your family and friends?
CC: I wish I could say that having chronic illness and pain didn’t affect my family or friends, but the fact is that it has been a rough road. I accept that my journey affects those around me. I am no longer able to provide an income, and my family does not reap the personal rewards that I do. Instead, my husband does chores I once loved to do, as well as the gardening and driving on extended trips. My husband and I no longer hike the mountains, something he had to give up.
I know comments that cut through to the soul. Invisible illness can fracture relationships. What I have learned is that I am thousands of amps short in the energy department. That can make me difficult, and I have come to accept what I once saw as criticism as my truth. I am a work in progress, but I try to conserve my energy for important battles that contribute. I can only live my life as an example, let others see that I don’t judge them, understand that everyone has problems and they have their hurdles to overcome. I can’t fix theirs, so it’s unfair for me to expect the same. I don’t expect support from family and friends, and when I least expect it is when it happens. In light of what I have experienced as a healthcare consumer, I stay grounded in knowing many people who care and are willing to collaborate. They lift me up. I am grateful for that; not everyone has that.
NFMCPA: What are your biggest personal battles now, and how do you confront them?
CC: I become frustrated with my body, with my nanosecond memory, with others, and with myself. I am learning to treat my body with tender loving care and to maintain a positive dialogue. I meditate, pray, and practice mindfulness. There are times when pain and feeling ill won’t let me escape to the place where I feel I am asleep, but aware, the “gloaming” moments. It’s okay if there are times I can’t get there; relinquishing judgment is being mindful, too. I try to respect my co-morbid conditions, and I follow my own advice on being prepared.
Writing and networking fulfills my mental, emotional, and spiritual needs, but computer time is hard on my migraines, my fibro, and my other pain conditions, so I will set new limits for social media. I need to be fair to my body too. A priority for 2015 is to finish writing a book I outlined a decade ago and to do more book reviews for others. Procrastination is not our friend.
NFMCPA: What inspires you?
CC: I am inspired by others, by quotes from famous people, by examples set by those who rise above their personal struggles. A favorite quote of mine is from Isaac Newton: “If I have seen further, it is by standing on the shoulders of giants.” My giants are those who share this journey with me. They are patients, physicians, advocates, clinicians, researchers, and fellow inspiring authors.
NFMCPA: How is your life now?
CC: My life now is about maintenance. I still struggle with physical symptoms and cognitive deficit, but I have learned to cope in a healthy way. When I conducted instructor classes for the American Heart Association, I always said, “If you really want to learn something, teach it!” I apply this through my writing. I learn so much from others. My giants are MY teachers. They are people like you.
NFMCPA: You are an inspiration to so many. What advice would you give them?
CC: Wow! I never thought of myself as an inspiration. I have been inspired by others, so I guess first would be to pay it forward when opportunity arises. Do it, despite the voice in your head. When times are tough, think about what your hero would do. Don’t judge. Admit to mistakes; it’s how we learn. Be grateful. Write your own affirmations. Be kind to yourself. Live mindfully.
In their Inspiration Moment, the editors at PainPathways publication were kind enough to print the affirmation I am probably most known for writing, so maybe this is my best advice.
“ADVERSITY is only an OBSTACLE if we fail to see OPPORTUNITY.”
NFMCPA: Thank you, Celeste. We appreciate your candor and insights.
Cindy Leyland from the Pain Action Alliance to Implement a National Strategy (PAINS) had this to say about Celeste. “Celeste is a true friend, mentor, teacher, guide and inspiration. Her research, speaking, publications add great value to the cultural transformation in the way pain is perceived judged and treated. She speaks from the heart, with her personal experience adding authority to her professional knowledge. I am honored to know Celeste.”
“Celeste has worked tirelessly for the fibromyalgia, ME/CFS and myofascial pain communities for years despite being ill herself. She has written a fabulous book, “Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection” as well as a couple of books of poetry on the subject of chronic illness. Despite her busy schedule, when asked to do a webinar for our non profit community, she agreed without hesitation. Her knowledge and genuine compassion came shining through and made a huge impression on our group members. Thank you, Celeste for all that you do! You are such an inspiration to all of us.”~ Tamara Staples, President, Fibromyalgia-ME/CFS Support Center, Inc. (www.FibroCFSSupportCenter.org). Tami Stackelhouse, Fibromyalgia Coach (www.MyRestoredHealth.com) and VP, Fibromyalgia-ME/CFS Support Center, Inc. (www.FibroCFSSupportCenter.org)
Become inspired yourself by Celeste at the links below;
Author Page http://amazon.com/author/celestecooper
Share Care Fibromyalgia Expert http://www.sharecare.com/user/celeste-cooper
Google+ Profile https://plus.google.com/+CelesteCooperAuthor