June 2015
Volume 4: Issue 2
What I Have to Say Does Fibromyalgia Own You?
FibroModem Paul Teeuwen-Green
And He Said
Joshua David
Take Charge
FibroModem
A New Weapon Can You Last Twelve Rounds?
Travis Wild & Kelly Davidson Anita Wheatley
Ode to Can (poem)
Author Unknown
How I Fight Back
Amy Mulholland
Don’t Quit (poem)
Author Unknown
Warriors Fighting Back
Melissa Swanson
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Reading good advice is easy; living with fibromyalgia is much more difficult. When you begin the fight against FMS, you join the ranks of a very special group of people - people who have had the will power to make their lives better, not just for one day but, for the rest of their lives. email: fibromodem@fibromodem.com blog: fibromodem.com Facebook page: www.facebook.com/FMawareness Twitter: @Fibromodem Shop at: cafepress.com/fibromodem Editor: Simone Moszkowicz FibroModem welcomes your feedback, comments and any appropriate contributions to further editions. To contact FibroModem, please use the email address: fibromodem@fibromodem.com © Copyright FibroModem 2012-2015 The views & opinions expressed are not necessarily those endorsed by FibroModem . Advertisers To advertise a product here, please contact FibroModem at admin@fibromodem.com.
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YOU can be a part of this group. How do I know? Many other people very like yourself have fought back to the point where they feel better, where they have regained control of their lives. You need only enough strength to take the first step today. One day at a time; one step at a time. You have already taken the first step – you’re reading this. Take the second step, then. Worry about the third step tomorrow. By choosing to fight fibromyalgia you have placed yourself on the winning team. Your life, and the lives of those you love, will be the better for it.
Remember if you have any views you’d like to share about the magazine, please send your opinions to contributions@fibromodem.com
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Sim-my,” Z (remember my nephew?) complained, rubbing his sore shoulder. “Isn’t there something that can just get the red out?”
Blue Cooling, astringent, and calming. Safest colour for any inflammatory condition. Green Adds harmony, balance, and natural healing. It is a safe colour for both physical and emotional pain relief. Orange Energizes emotions and accesses creativity. Can be used to unblock repressed memories. Purple Transformative. Aids with anxiety, melancholy, and addictions. Alleviates stress. Red Stimulates and emboldens. Strengthens anger, movement, and warmth; don’t use on inflammation or if angry. White Brings perfect balance. Can be used on most pain conditions, but you might need to dim for serious pain. Yellow Strengthens nerves and mind. Can highlight the beliefs supporting painful conditions.
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Little did my nephew know that from a subtle energy perspective, he was spot-on. The colour of pain—as well as inflammation, irritation, and annoyance—is red, or so says Cyndi Dale. Science is now discovering that every colour of light produces an effect. In energy work, every ailment, emotion, and throbbing headache can be described as a colour. This is because everything is made of energy—physical and subtle—or information that vibrates. Vibrations described as “red” have a different frequency and effect than those comparable to “blue.” Red excites and blue calms. Because of this fact, if we can literally “get the red out” of a painful part of the body, and insert a more soothing hue, we can help restore comfort.
Persistent Pain Pain can result from illness, injury, pregnancy, surgery, tension, trauma, and even treatment for disease. What truly cripples people is chronic pain—pain that lasts more than six months. Neither can we ignore depression. Studies show that the emotions surrounding depression, including sadness and anger, can create or increase chronic pain. Coincidentally, one side effect of pain can be depression. Despite decades of research, chronic pain remains notoriously hard to control. All traditional treatments, including prescription drugs, only help about 60 percent of individuals with pain, and then only temporarily.
A New Frontier The subtle delivery of light can become one of your key pain-relief methods. It meets all the requirements for a “mini-miracle” technique. Light is free. It is always available. And in the form of various colours, each of which yields specific effects, light can be delivered subtly.
Light therapy, sometimes called colour therapy, chromotherapy, or colourology, has been used around the world and across time for healing purposes. Colour healing was a wellaccepted practice in ancient China, Egypt, Greece, and India. Today, there are several hundred articles published in reputable journals on the beneficial applications of light to improve biological health. Light can be used to dislodge stuck memories, improve the immune system, assist with wound healing, and more. Light is also a complex medicine. For instance, research showed that the colour of a pill can alter its effects, but the shift can be dependent on culture and gender. An Italian study showed that blue placebos for insomnia sufferers helped women but had the opposite effect on men; and, colour can stimulate pain or help relieve it. Rather than work with direct or visible light, a subtle energy practitioner employs subtle energy, which is also called intuitive, psychic, or spiritual energy, directed through intention. The premise is that by shifting subtle energy, you can alter physical matter quicker and more powerfully than by using physical implements alone.
The Power of Colour What colours accomplish what goals? Researchers have found that warm colours, such as red and orange, are arousing. They increase blood pressure, decrease depressive moods, increase respiration rate, and create inflammation. Cool colours decrease hypertension, alleviate muscle spasms, relieve insomnia, and can be as effective as a tranquilizer in decreasing tension. Bright, white, full-spectrum light is used in treatments for addiction, anorexia, bulimia, cancer, insomnia, jet lag, seasonal affective disorder, and the effects of shift work, as well as to reduce overall consumption levels of medication. Blue light is effective in the treatment of rheumatoid arthritis and pain conditions of all sorts. It is also being used to heal injured tissue (including burns), prevent scar tissue, and ease lung conditions. It’s opposite - red light - is used for constipation and certain types of wounds. Red also provides an immediate burst of energy, while pink light suppresses hostility, aggressiveness, and anxiety. Pink is often cancelled out by yellow, which is so stimulating that experts suggest a relationship between violent street crime and sodium yellow street lighting. Other healing colours include indigo to stabilize; turquoise to disinfect and relax; brown to ground and reconstruct; grey to neutralize; gold to empower; silver to deflect negativity; and black to absorb negativity or dark energies.
Putting Colour Into Practice How do you use this colour knowledge in subtle ways to help chronic pain? The core approach is to eliminate the negative colours and add enhancing colours.
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LIVING IN A STATE OF
Anita Wheatley is a fellow Fibromyalgia sufferer. As a writer and blogger, sitting and typing on the computer for long periods of time is challenging; but Anita just released her first book Choice for Change: Reflecting More of Him and can attest to what a pain it was to write (literally!) The book is available at Amazon.com, Barnes and Noble, and Family Christian Stores.
While raising my children I always taught them to stay away from danger. Although they may not have been old enough to fully understand the complexities of what imminent dangers were lurking, they were able to associate the color red with potential danger that could result in physical pain. Images of red that they could relate to were things such as fires, firetrucks, stop signs, and emergency lighting such as flares. From a non-physical perspective, I had to also be astute to my youngsters’ emotional wellbeing. I needed to recognize when their mood changed, countenance fell, or when they were feeling blue. Although emotions help us to relate to others and are what motivates us as human beings, they can also hinder ones’ ability to perform normal activities and isolate us. In the right mix, they can disrupt a person’s fullness of life. If these two conditions materialized within one of my children at once, physical pain (red) and emotional pain (blue), I discovered myself comforting a child in the temporary state of purple (red + blue). I realized that as a mom I needed to provide encouragement along with a mother’s tender nursing skills to help my child cope with their unhealthy state. As a sufferer of fibromyalgia, this health condition causes a person widespread body discomfort that is amplified. With the increased pain sensitivity, ones’ emotional condition can be aggravated. The combination of pain (red) and emotional anxiety (blue) takes its toll and pushes an affected person into a state of purple.
Are you living in a state of purple? Fibromyalgia can suck the life out of us, if we let it. Using Purple as an acrostic, there are six tips that can help you to manage your symptoms and improve your mood and well-being and rebound from your “purple” days.
P = positive Don’t let the negative “blues” immobilize you. You need to protect your personal boundaries, plan ahead, and pace yourself. Give yourself permission to say “no”. By turning down projects you cannot handle you will minimize your stress level, however, agree not to heap on any
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guilt feelings. Refuse to look at the “former” you in the rear view mirror and instead look ahead and embrace your “new” self.
U = understand Understanding the disease and its effect on you helps to recognize your limitations. You may want to keep a journal to note specifics that can aide you in acknowledging your body’s responses. This will help you to re-calibrate types and duration of your work and social activities, sleep routine, and relaxation techniques.
R = refuge Seek a place of refuge. Designate a room or a special place for private retreat. Listening to soothing music, reading a book, or meditating on the Bible can provide the physical and mental rest that will pay dividends.
P = purpose Realize you still have a purpose and keep that focus. You need to learn coping mechanisms that will keep you from isolating yourself and becoming depressed. Realize that there are resources available to help you such as message boards where you can connect up with fellow fibromyalgia sufferers. Remember, your family and friends still need you!
L = limitations Those come with the disorder, but don’t let them immobilize you. Acknowledge and understand your physical limitations. By placing parameters on your activities it will help soothe and ease your physical and emotional pain like salve on sunburn. In so doing, this will have an effect on your emotional blue pain because it gives you permission not to participate fully in your choice activities. This will help to minimize any flare up.
E = educate The best antidote (absent a cure) is to know the enemy (fibromyalgia) and knowing what does and doesn’t work for your body. Being armed with knowledge helps and supports you when the world around doesn’t understand.
If you institute these six wellness suggestions you will be better equipped while…
Living in a state of purple.
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I would like to share some experiences that I have about living with Fibromyalgia. While saying that dealing with chronic pain is not easy is an understatement, there are so many things that we can do to make our lives a little better This issue’s theme is “Red and Blue Make Purple.” I spent quite a bit of time thinking about how to develop this theme. Purple is the official color of the Fibromyalgia campaign (if you didn’t know that already).
And in case you missed grammar school, red, yellow and blue are primary colors. All other colors are made from combinations thereof. Then my idea came. I’m not sure how many people are aware of this, but here in Boston, MA, we have some of the best rheumatologists in the nation. Recent advancements in medical science suggest that FMS/CFS is genetic. Specifically, we are talking about the MTHFR test. Here is where red and blue make purple. There is a simple blood test you can take. Most insurance companies will cover it. But in a large portion of the FMS/CFS community, they have discovered consistent gene mutations. Specifically C677T and A1298 C defects, which can be homozygous, or heterozygous. If you are worried, the homo and hetero have nothing to do with your sexuality. I tested positive for both gene mutations, and heterozygous. These specific genes, and defect combinations, are overwhelmingly seen in people with FMS that display prominent fatigue symptoms. The gene mutations are believed to come from your parents. You may have inherited a mutated gene from each of your parents. Red and blue make purple. As a purple being you have the foundation for a variety of ailments. With this newly acquired knowledge, science is making real progress in treating the disease. Alternatively, you may have one parent, who has both gene mutations, and passed them on to you. They were already purple. Did you not notice one of your parents was purple? It happens to all of us
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In such cases, said parent will often exhibit similar symptoms to you. This is the case with me. My mother has FMS. However, she suffers from significantly less fatigue than I do. So, my Dr. speculates she probably has both gene defects, but a different combination of mutations. She has not been tested as of yet. I encourage you to talk to your Dr. about it. Ask to be tested. This is all new science. Depending on your test results, it’s possible to begin a treatment plan that is based on your specific combination. Gender does not affect the mutations. Men and women can have the exact same mutations. Even with this knowledge, the medical community still does not understand why FMS/CFS seemingly affects more women than men. I’m just one of the lucky ones. They also do not understand yet why people can have the mutations, but not display any symptoms. A search for “MTHFR” will pull up enough information for you to sift through for a month. But, unless you know your specific mutation combination, what you read may not pertain to you. If you will permit me to paraphrase; my combination is due to a retarded enzyme, which is responsible for inducing methylation. Methylation is a process by which your body produces energy. It’s a domino effect, where various vitamins, sugars, and amino acids are processed into energy. My results are linked to: depression, anxiety, insomnia, and addictions. I have suffered from all of those disorders since I was a teen. My results are also linked to epilepsy, which I developed two years after the onset of FMS. I was diagnosed with “Adult Onset Epilepsy.” For my safety, I have to be on medication. If you have a different variant of those two genes, along with the common FMS symptoms, you may be prone to: cardiovascular problems, Atherosclerosis, stroke, blood clots, still births or miscarriages, instead of Epilepsy, like me. Our DNA is incredibly complicated. It is the blueprint of our construction. If the mutations are different, what they indicate can be different. Treatment can be different. Don’t worry too much about it, or diagnose yourself. If you have these mutations, you have had them for a long time. Worrying about it isn’t going to change anything. Just get tested and proceed from there. If you would like to learn more about it, a Google search will turn up as much information as you care to read. However, I want you to take note of this; this test is absolutely scientific. It is not medically disputed. It is also an extremely relevant piece of information about you, especially you! For a reason I do not understand, a search will turn up hundreds of pages, some of which are in blog format. So you must sift through, follow links, or otherwise search for the medical papers, studies, and clinical trials. However, they are easy to find. I’m telling you this because I don’t want you click on a page and think to yourself, “This is just the latest in ‘snake oil science.’” I assure you, it’s a real thing. And we are in the pocket of people medical companies actually care about. Being purple, we are hard to miss. According to The National Fibromyalgia Association, between 200-400 million people worldwide have FMS/CFS. That estimate was for 2010. That’s a lot of people drug companies would like to help, even if it is in their own self-interest. If you are like me, every day you struggle to understand why this is happening to you. I was a perfectly healthy, 26 year old runner. My “stats” were (and still are) that of an Olympic
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athlete. On paper, I’m as healthy as a horse. But in real life, I feel as healthy as a corpse. Why am I so tired? Why am I in so much pain all the time? Why is everything so unpredictable? Why did this seemingly happen to me overnight? I vividly remember my last day as a “normal” person, and my first day as a “sick” person. I’m 37 now. But the last 10 years have been very difficult on my family and me. Like many others, I look fine. I appear healthy, strong even! Yet I feel like I’m being held in one of those torture positions. Scientists are starting to understand. There are already experimental supplement protocols available to aid with your specific mutations and symptoms. Over the counter supplements, and/or prescription. Because of my seizure disorder, I have not tried any of the protocols yet. Before I start anything new, I must get the ok from my neurologist. The types of seizures I have are dangerous to me, and those around me so I must be extremely cautious about anything I take. But I will be following the advancements the medical community makes in this regard very closely. Science believes they have found the root cause of our problem. It is unclear how long it will be until they have found a way to prevent it, or treat the symptoms. But there is hope that soon all purple people will be in a little less pain. Every day is a struggle for us. I read something recently I really enjoyed. It said “For people suffering from FMS/CFS, a good day means having the energy to participate in life for a few hours.” That is spot on. Most of us are familiar with the 50’s song The Purple People Eater. In this game, what eats us purple people is losing hope. Don’t give up now. Huge advancements are being made in how to help us. You’ve made it this far. You deserve to feel better, and it may happen sooner than you think.
Are you a man with Fibro?
Changes are just around the corner. You have bravely been rocking the purple look for a long time. Pretty soon, you might just be able to put on a different outfit. And I bet it looks good on you. If you can pull off purple, you can do anything.
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Do you want to talk to other men with Fibro – about how they cope every day, what helps them, etc? Join the closed, private group For Fibro Men
You might remember Celeste from her previous blog, Baking, Butter, & Happiness. Now, she writes at Leftie Lotus. Celeste is a multi-talented 25-year-old with a chronic pain condition who doesn’t really know what to do with herself; so she helps people to find the tools to start advocating for themselves, but there’s nothing wrong with saying that you need some help before you can do it on your own.
I would like to share some experiences that I have about living with Fibromyalgia. While saying that dealing with chronic pain is not easy is an understatement, there are so many things that we can do to make our lives a little better. I'm not talking about exercising, vitamins, cure-alls, crystal-healing, or anything else that may or may not have a place in treating chronic pain. The one thing that I've found is that you need to find something to work against the red-hot pain so that you can enjoy each day with the perfect purple mix. In this case, the missing element is blue; something that you love that brings a sense of spirituality back into your life. Not everyone has a hobby, and when you're living with chronic pain, it makes small tasks like crafting or painting seem like insurmountable challenges. There's a type of therapy that is centered around creating for meditation purposes and I first came across it when I started reading a book called The Knitting Sutra. This book opened up a whole new world where having a hobby wasn't just a way to pass the time, it was a spiritual outlet where you can allow yourself to really enjoy your creativity and it's a time where you can be yourself without the constraints of your pain.
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Getting to the point where you can fully enjoy yourself freely takes some work, and it also takes some careful listening to your body. There are a few requirements for chronic pain sufferers while choosing a hobby than for anyone else, and to really enjoy being creative it's important to look at each of these things before choosing one: 1. Can you do your craft while sitting? 2. Can you do it during the nighttime hours? 3. Can you do it while flaring? 4. Can you do it in your pajamas? 5. Can you do it at home? Be sure to add more criteria if you need it, but these were the basics for me to begin my own search into something to tame my red-hot pain to help make my life a little better. Eventually, I settled with knitting as my first outlet, eventually moving into zentangle, clay work, painting furniture (that was a bust!), volunteering online, and even taking online classes for free from EDX or Coursera. If it touched my soul and it got me excited, I went for it! The only thing in all of this is to find something that ruminates with you. If you find a beautiful colour that makes you smile or if there's a quote that really jives with you, find a way to bring that into your life in as many ways as possible. By doing this you will be able to tame your red flares with the calm blue of your craft, your life will be a little more balanced and certainly you'll be a little happier.
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Melissa Swanson is a chronic pain patient, advocate, and author through her Facebook page and blog. She offers positive encouragement, medical information, resources, and support to 10,000 + fibromyalgia and chronic pain patients. In addition to her own blog, Melissa has been published in Living Well with Fibromyalgia and the NFMCPA Advocate Voice. Graduate of the 2014 Class of Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association. Member of the Leaders Against Pain Action Network.
Heroes are people like you and me. Who choose to act selflessly. Heroes give all they have, then give some more. Heroes take action when action's called for. Heroes pick themselves up when they make mistakes. Heroes keep trying. They've got what it takes. Heroes are willing to give their all, They stop, look, and listen, then answer the call. We look to heroes to show us the way. To go the extra mile, to seize the day. So be kind and helpful whenever you go. For someone may look to you as a hero. RPB Books - www.summerbridgeactivities.com In my classroom my students read the above poem titled "Heroes" and discussed what makes a Hero. We talked about how Heroes come in all forms. Not all of them wear a uniform and seldom do they get enough appreciation and thanks that they deserve. The poem made me start thinking about Heroes. It really stuck with me. I asked my students to who they considered a hero. The younger students named superhero's they have seen in movies like spiderman, batman and the avengers. The older students listed Fireman, Policeman and Soldiers. I asked a 5th grader the same question, he answered "my Dad". Sometimes Heroes are easy to spot because of what they wear. Fiction superhero's wear disguises often using red and blue colors. Those who protect us in civil service and military jobs wear uniforms to identify them. We learn as kids that fireman wear red hats and police wear blue uniforms and a badge. We watch on the news when "ordinary" people doing extraordinary things to help save other people’s lives. The official national colors of the United States are seen on the American flag: red, white, and blue. The United States flag's represents Heroes that have helped shape and protect our Country.
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As I listened to them read the poem it struck me ~ it was the perfect poem to describe the Fibro Warrior. The parent/grandparent that spends all of their "spoons" taking care of their children's needs from cooking & laundry to volunteering as a Girl Scout leader or in their classroom. The adult children while facing their own health issues will travel to visit their aging relatives even though it is so much more difficult for the fibromite to travel. The Advocate/Leader who works tirelessly at the cost of her/his own health and pocket book travelling the country spending day & night to ensure others are trained advocates to help "Make Fibromyalgia Visible". They fight for the awareness, education and laws that are needed to protect those of us facing an invisible yet very debilitating illness. The friend who continues to put others first helping them during a time of loss or illness all the while wearing a mask forcing a smile trying not to show their true feelings of pain, exhaustion and depression. The child still learning how to express their feeling of pain and isolation. Often struggling to convince adults (parents, teachers, doctors/nurses) that even though all the tests show there is nothing wrong with them the pain doesn't go away. Purple is a combination of red and blue. Red often represents fire and pain (flare-ups). Blue is not just a calming color but it can also be used to describe sad/depressed. It is said if you surround yourself with purple you will have peace of mind. Purple is a good color to use in meditation. Using purple in your life can help to rebalance your life, remove obstacles, calm overactivity or energize for depression. It can uplift, calm the mind and nerves. Purple is symbolic of bravery and courage. Whereas, fictional and non-fictional heroes uniforms/costumes are often red and blue. It makes sense that the invisible heroes use a purple butterfly or ribbon to show our alliance in an army fighting against an invisible enemy. Heroes can be described as "a being of extraordinary strength and courage",
"Courage is being scared to death and saddling up anyway." ~ John Wayne
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