Category Archives: Advocacy, Activism & Awareness
World A.S. Day is today May 4, 2013. The goal is to help draw awareness to Ankylosing Spondylitis which is a physically debilitating disease affecting over 2 million men, women & children. In spite of chronic pain, crippling symptoms & incredible discomfort, many thrive while living with this autoimmune disease. The Positive Pear offers comfort, support and helpful tools one would need to continue thriving while living with A.S. Sending love & hugs to all those thriving & surviving!! ♥ Read more about Ankylosing Spondylitis: http://thepositivepear.com/invisible-chronic-illness/ankylosing-spondylitis/
Happy Earth Day. Earth Day is meant to raise awareness about various environmental issues, such as air pollution, water pollution, deforestation, habitat destruction and lack of biodiversity, sustainable energy, reduction of energy usage, climate changes and issues relating to global warning, ecological crisis, species poaching and loss of species, and environmental policies.
One very important issues of concern lately is Neonicotinoid pesticides and its detrimental impact on the Bee population. Neonicotinoids are a class of neuro-active insecticides chemically related to nicotine. This class of insecticides has been in existence since the 1980′s initially developed by Shell and further developed by Bayer in the 1990′s. The neonicotinoids were initially developed because they showed reduced toxicity to mammals compared to the previously used insecticides which were organophosphate and carbamate. However, these toxins have always been harmful to insects.
Researches have linked Neonicontinoid to the Honey Bee’s inability to learn scents, hampering their esfforts to collect food. Colony Collapse Disorder (CCD) first discovered in 2005, has dramatically worsen within this last year. Honey Bee deaths are on the rise around the globe, with a commercial loss of hives at 40% to 50% that’s approximately 5,650,000 lost hives, valued at $1.61 billion. Needless to say that loss of the honey Bee population is a threat to U.S. Agriculture and according to Albert Einstein “If the honey bee becomes extinct, mankind will follow within four years.” Italy, France, Slovenia and Germany have taken action to limit the use of bee-killing pesticides. In January 2013, the European Food Safety Authority stated that neonicotinoids pose an unacceptably high risk to bees. The European Commission has also pushed for neonicotinoid pesticide ban in Euorpe, but chemical companies such as Syngenta and Bayer have loudly protested. What can we expect from The U.S. Department of Agriculture? Probably about as much as we expected regarding food labeling of GMO foods. The U.S. Environmental Protection Agency (EPA) is currently in the midst of approving a deadly NEW neonicotinoid called Sulfoxaflor.
What can we do? Well, as the food movement learned regarding GMO Food Labeling with the failure of Prop 37, we can’t outspend “Big Food” and large named corporations with deep pockets who are causing irreparable harm to the environment and to human life. Additionally, we can’t out campaign them, but we can potentially outsmart them. As with many things that are out of our control, I think it helps to drive awareness, because our efforts large or small due make a difference. We do have a voice, we can help in this instance by asking Congress to Ban Neonicotinoid Pesticides before they completely devastate the U. S. Bee Population.
Boston Strong on Earth Day
On Earth day as my focus moved from our food, the environment and the many hazards that both the healthy and chronically afflicted are exposed to, to focusing on our loss of peace and the demand for justice in Boston. I could not help but think pf our community as we return to a form of normalcy. We usually spend a great day in Boston doing something earth day related, but after the bombings and subsequent lock down of the city, which lead to the apprehension of Dzhokhar Tsarnaev, in an area that is a short distance from where my family once lived, we elected to donate our earth day time to paying our respects to so many who were affected by the bombings. We would have attended the Boston Marathon this year as we do each year, if my youngest weren’t on crutches. We actually cheered for my sister-n-law who ran in the Marathon for the first time this year. We also had many friends who were also running and though forever touched by this horrible incident, all came away completely unscathed. On this earth day we honored 8 year old Martin Richard, 29 year old Krystle Campbell, 23 year old BU Grad Student Lingzi Lu of China and 23 year old MIT Police officer Sean Collieral and the many victims the Boston Marathon bombings. We prayed for peace and comfort for the families, along with gratitude and appreciation for own safety and for those we know and love. A calmness has been restored to the Boston area. Peace and hope have been restored in all of our hearts, along with renewed faith and confidence in humanity. Through the vigilance of those who helped on the day of the bombing to our law enforcement agencies who were on the ground until the suspect was apprehended. We can only hope now that circumstances will allow justice to be served in an appropriate manner. May Peace light & love be with each of you and may we all continue to be Boston Strong.
As a Holistic Health Advocate, stress is one of the leading topics that I cover with my clients. As a Health, Wellness & Fitness Professional, Speaker and Presenter, I’m also asked to speak on and write about related topics and stress of course is one that I’m asked to cover. It’s also a topic that I reference quite frequently in many posts via my blog “The Positive Pear.” Most recently I was asked to cover this very topic in which I entitled “Live, Love & Laugh Stress Awareness & Management” it also happened to be “Stress Awareness Month.” Here are a few highlights from that discussion…. People often discount the adverse effects of stress and its negative impact on our mind, body and emotions. Stress is directly linked to the six leading causes of death which are, heart disease, cancer, lung ailments, cirrhosis of the liver, accidents and suicide. Stress management is incredibly important for everyone and especially for those of us who are living with and battling chronic invisible illness & autoimmune disease, because not only are we more susceptible to stress, but having frequent bouts of stress can trigger many symptoms of our conditions. Long term exposure to high levels of stress can even cause a healthy body to remain in constant “fight or flight” mode with an inability to properly regulate the production of stress hormones. The continued release of these hormones can lead to impaired immunity. Which can lead to chronic conditions like adrenal fatigue, thyroid imbalance and several aging related diseases. Symptoms of stress often include, allergies, fatigue, chronic headaches, unexplained weight gain, obesity, diabetes, hypertension, insomnia, digestive issues, depression, memory impairment, heart disease, strokes, and certain types of autoimmune disease.
Avoid ineffective fall back methods:
It is important to recognize your stressors and to take the appropriate action which would be either to avoid, alter, adapt or accept situations in which we’ve been exposed. Avoid resorting to methods which only temporarily reduce stress while creating other problems, such as drinking, pills, drugs, smoking, overeating, sleeping too much, zoning out, running away/becoming overly busy, procrastinating, withdrawing from friends, family and activities in addition to lashing out.
More Effective Ways of Managing Stress:
Remember that everyone encounters stress, working professionals, business owners, new parents, stay at home moms & dads, single people, married couples, teens & even children. The earlier in life that we learn to recognize the symptoms of stress and how to manage & cope the better. It is also very important to adapt effective coping mechanisms and to utilize these techniques regularly: First and foremost, know your limits and recognize when you’re exceeding them. learn to say “no” when appropriate. There is an example with the use of “spoons” and how it relates to the energy level of those of us who are battling chronic invisible illness. We’re only allocated so many per day and if we use too many, then we’re depleted and we run the risk of not being able to accomplish things that are incredibly important. We’re then forced to pick and choose our activities based on the number of spoons we have each day. This example can apply to everyone whether they’re chronically ill or incredibly healthy , ecause we all encounter stress and we can encounter it regularly. Simply put, do not take on more responsibly than you can handle. Be mindful of your association, support systems and friends and choose wisely. Avoiding negative, confrontational and toxic people who cause you stress.
Take Control of Your Life: Utilize proper time management skills, plan ahead, stay organized, prioritize and choose methods which help you to avoid stressors.
Check in Emotionally: Voice your feelings by speaking up for yourself or talking it out with a friend or family member. Work on developing or utilizing effective communication skills, rather than holding things inside and allowing them build up. This might also require becoming more assertive. Also be willing to compromise in situations and make personal adjustments if needed.
Change Your Way of Thinking: By changing your perspective you’re more apt to seeing the bigger picture, instead of seeing only the many individual problems that you may encounter. Adjust expectations that you have of yourself and others by making sure you have a realistic view of life. This is especially important if you are a perfectionist (like me). In doing so you’re less likely to set yourself up for disappointment and failure.
Acceptance is Crucial: Accept yourself for who you are, where you are and what you have to offer. Accept things which you can not control, such as the behavior of other people and focus on things that you can control such as your reactions. Accept the fact that we live in an imperfect world, with imperfect people and allow them to make mistakes by forgiving them and letting go of anger and resentment, which will free you from negativity.
Adjust Your Attitude by Focusing on the Positive! How we think has a profound impact on our emotional and physical well-being thus affecting our ability to manage stress. Look at bad experiences as life’s learning opportunities. Do not remain here in this bad place even if you’re at fault. Simply make the appropriate adjustments, pick up the pieces and move on. When things are out of control, take a moment to think about all of those things that are going right in your life and all of the things that you are truly appreciative. Focusing on even the smallest of gifts, talents and accomplishments can help us to keep things in proper perspective.
Lastly but certainly not least, Live, Love, Laugh and enjoy life and all that it has to offer! Nurture and pamper yourself, get a message, exercise regularly, take a yoga class, practice meditation and relaxation techniques. Take a long hot bath, with scented lavender candles and relaxing music. Curl up with a good book and a cup of chamomile tea, write in your journal, or on your blog, surround yourself with nature by taking advantage of a good walk, a long hike, a bike ride, or by working in the garden. Always remember that balance in life is crucial and that we can all benefit from having a little more fun, relaxation, laughter and enjoyment.
Since 1992 April has been Stress Awareness Month
Additional tips on managing stress via “The Positive Pear” Natural Stress Management Technique, Deep Breathing Technique to Reduce Stress, Relaxation is Good for the Mind, Body & Soul, Is There A Prescription for Yoga In Your Future?
I’m a health, wellness and fitness professional & blogger. I also live with a form of autoimmune arthritis known as Ankylosing Spondylitis, as well as Fibromyalgia & Chronic Fatigue Syndrome & Immune Dysfunction Syndrome. I blog about how to navigate the symptoms of these conditions naturally and holistically, while also maintaining a positive mental attitude. I created The Positive Pear as a resource, where it’s my philosophy that we can be “Chroncially happy, healthy, fit & fab” in spite of living with Invisible Chronic Illness.
“Being Positive when Living with a Chronic Illness” has it’s own meaning for everyone. To many who are sick it’s a way of trivializing their suffering and to a small minority it’s this wonderful, peaceful state of mind that requires being completely oblivious to the realities of life. What does it mean to you? Being positive does not come at the risk of ignoring the realities of life, while pretending to be happy. It’s really about being as positive as possible in light of the circumstance, and that gives us the motivation and the ability to enjoy all that we can. I am an eternal optimist, I will always see the class have full and I will always find the positive side to any situation, but I am also a realist. Naturally “being positive” does involve” some degree of happy thoughts and smiling faces but that’s certainly not all. Being positive is a state of mind accompanied by appropriate action. Which if taken at the appropriate time will take us in the direction that we need to go.
I started the “The Positive Pear because I saw the need to encourage a positive mental attitude among people who suffer from invisible chronic illness, and more specifically auto-immune arthritis and aside from saying “be positive” I wanted to define exactly that meant to people who are battling chronic health conditions. While also providing effective tools, to help with achieving this goal. Those who live with chronic illness do not need permission or help with negativity. It’s a natural state of mind that we can easily gravitate towards, when we’re suffering. However people do need permission, encouragement and direction in terms of how to being positive. Sufferers need to know that it’s ok to smile, be happy and enjoy life without the risk of trivializing their own suffering. They need to know that it is not a requirement to appear downtrodden to be taken seriously.
“The seed of suffering in you may be strong, but don’t wait until you have no more suffering before allowing yourself to be happy.” ~Thich Nhat Hanh~
When I was asked by Tiffany Westrich, founder/CEO of the International Autoimmune Arthritis Movement (IAAM) & WAAD Event Coordinator, to host a the chat ”Being Positive when Living with a Chronic Illness” I was honored and very excited to have the opportunity to discuss a subject that I enjoy immensely. I also knew that I had my work cut out for me, because this is not an easy subject to tackle with people who are in pain. I thought I’d start by addressing a few misconceptions relating to being positive and living with invisible chronic illness by counteracting these misconceptions with a few truths.
Misconception #1) In order to appear positive I need to smile, be fake and pretend to be happy all of the time:
Ok, let’s be real here, whose happy, or feels like smiling all of the time & who benefits from “fake” positivisty?? Absolutely no one. Though I’m often happy and I do happen to smile a lot, there are days when I simply do not have it in me. Some days you will not have it in you and that’s perfectly acceptable. We have to look at life realistically and accept ourselves for who are, where we are in our lives and how we truly feel. We are wonderful people who happen to be afflicted with a chronic illness. We have both good days and bad days and sometimes we feel wonderful and there are many times when we do not. Self Acceptance is important one of the very first steps to being positive. If we have unreasonable expectations of ourselves, then it becomes very difficult for us to be happy and when we’re unhappy we can not be positive.
Misconception #2) I can’t complain, nor can I speak openly and honestly about how my chronic illness affects me:
This is a very common misconception. I think the mistake that many of us make is not establishing the proper support systems. We attempt to talk about chronic illness and our symptoms with people who do not understand and have no way of knowing what we’re going through, so they can not provide the proper encouragement that we need. As a result they inadvertently trivialize our suffering. If we can not find people within our families or within our communities, we have wonderful online communities filled with people who can understand what we’re experiencing. Sometimes you need to complain, other times you need to cry and it’s during these times that you truly need someone who will be there for you without judgement. We also want to make sure that within our support systems that we have people who are truly supportive. If needed, we have the right to remove toxic, negative people from our lives. Remember “Once You Remove Negative People Positive Ones Appear” & Be Positive & Surround Yourself with Positive People. If you haven’t already, begin the process of establishing a good support system.
Misconception #3) Being positive means I must ignore the bad things that happen in life:
Another common misconception. As we roll with the ebb and flow of life it isn’t hard to miss that bad things sometimes happen. Additionally, misunderstandings, disagreements and conflict also happen just like eating, sleeping and breathing. However, how we handle the bad things that we encounter is what truly matters. We must keep in mind our physical challenges and the impact that stress has on our symptoms and we’ll need to approach situation accordingly. It is important to deal with whatever comes our way. If we’re upset, sad or even angry. It is important to acknowledge how we’re truly feeling, why we’re having such feelings and the best way of coping with these feelings. Seek resolution, by addressing issues if and when needed, or by ignoring them if appropriate. Most importantly being prepared to move on once an issue is resolved. Harboring anger resentment or ill feelings do not benefit us. Being positive does not come at the risk of ignoring one’s own feelings even the bad things in life. However, we can not remain in this “bad” place. We deal with our rough patch, pick ourselves up, dust ourselves off and forge ahead! During these challenging times, I like to refer to a poem entitled “Don’t Quit” “When things go wrong, as they sometimes will” read it & refer to it, because it serves as a nice reminder.
“People have a hard time letting go of their suffering. Out of a fear of the unknown, they prefer suffering that is familiar.” ~Thich Nhat Hanh~
If “being positive” is none of misconceptions that we’ve discussed, then what is it? Being positive while fighting chronic illness means having a positive mental attitude, inner and outer strength, peace, contentment, wellness and ultimately happiness. After all, in spite of battling chronic invisible illness we also deserve happiness. Be willing to let go of some of the self limiting belief systems and open yourself up to other possibilities. What are the best ways in which we can achieve a positive way of thinking? I’ve separated these methods into (4) categories. Giving us the opportunity to briefly discuss the impact that adapting these methods will have on our frame of mind, health, well-being and over all attitude.
1) Brain Food: “All that we are is the result of what we have thought. The mind is everything. What we think we become.” ~Buddha~ What we feed our minds is just an important as what we feed our bodies. Feeding our brains positivity and encouragement while help us to feel both positive and encouraged. This is why you’ll find beautiful picture with inspirational messages in many of the posts on “The Positive Pear”. I think we need constant reminders, because we have the distraction of our symptoms to contend with. We also want to surround ourselves with positive people who can reinforce the type of thinking that we like to have. Just as we’d surround ourselves with successful people, if we were striving for success. Also having reasonable expectation of ourselves, while accepting ourselves for who we truly are and where we are in our in our lives. May is Mental Health month and a reminder to those of us who suffer from physical conditions. We must be mindful of the impact that our conditions have on our mental and emotional health as well. Keeping an eye out for symptoms of depression, stress and anxiety. Educating ourselves about our conditions, all of it’s symptoms and the appropriate treatment and all treatment alternatives not just medications.
2) Healthy Nutrition: Our bodies are working to hard to function as they should, in spite of having compromised immune systems and numerous symptoms. It is important to feed our bodies whole food nutrition and “real food” (chemical-free) focusing on anti-inflammatory foods such as fruit and vegetables, drinking ample water and eat healthy protein. While reducing simple carbohydrates such as: cakes, cookies, pizza, pasta excessive amounts of sugar and completely avoiding processed foods. When eating carbohydrates make sure they are complex carbohydrates, such as those found in fruit, vegetables and whole grains. A good rule of thumb, when “eating for healing” is that if you can’t grow it, then you probably shouldn’t eat it. Though that only roughly covers it:) Have you considered juicing? It’s a wonderful way of getting massive amounts of anti-inflammatory greens into our system without reeking havoc on the digestion system. (check out TPP’s Organic Juicing section) Additionally we want to limit our chemical exposure such as insecticides and pesticides, by buying organic whenever possible and keeping a good fruit & organic/chemical free fruit/veggie cleaner on hand. We also want to avoid GMO foods where the DNA of the food has been altered to grow these precise chemicals within the foods themselves. What we feed our bodies is incredibly important when battling invisible chronic illness, because we use food as fuel and what we put into our bodies can exacerbate or symptoms. We want good fuel, because we want to feel good as often as possible.
3) Exercise: Exercise is crucial to all, especially those of us who suffer from chronic illness. Staying fit can even help us to manage certain symptoms, such as depression, stiffness and chronic pain. What are some exercises that are helpful? For Autoimmune Arthritis Sufferers, strength training is incredibly important, because strong muscles relieve stress on the joints. Yoga is a wonderful way of maintaining flexibility, detoxifying the body, and fighting depression. Dance-Fitness such as Zumba, Salsa, Hip Hop Cardio, Hula Hopping are typically low-impact, incredibly fun and a wonderful way to sneak in weekly cardiovascular exercise without feeling like you’re working out. Also Swimming, Pool Aerobics, Biking, Hiking & lastly Walking which is something that everyone can do and it’s something that you can incorporate into a weekly fitness routine. Exercise reduces stress, allows us to maintain our mobility and it also releases endorphin’s which helps to regulate the pain centers in the brain.
4) Symptom Management: Using a well-balanced approach to managing our disease and chronic conditions is incredibly helpful. Eating well, getting proper amounts of rest and reducing your stress levels are incredibly important in reducing symptoms such as flares. Using healing methods such as exercise, yoga and meditation, natural and alternative therapies such as acupuncture, massage, TENS, MENS, chiropractic treatment (for those without musculoskeletal conditions) herbal supplements, food based supplements such as protein powders which are high in amino acids can be a great way to supplement current treatment methods. Though this falls more under “brain food” educating yourself about your medications and all potential side effects and making changes if needed is also helpful for symptom management. Is your condition something that can be managed naturally and holistically? Consider it as an option and if not, further consider adding a few of these alternative therapies & unique healing elements to your overall care.
Brain Food, Exercise, Healthy Nutrition, Symptom Management are (4) of the key areas to helping us in working toward balance. Being balanced is crucial to achieving and maintaining a positive mental attitude and our positive mental attitude allows us to maintain our hopeful outlook on life. Thank you for taking the time to read this post on how to “Be Positive When Living with a Chronic Illness” and thank to those of you who also joined us for the WADD “World Autoimmune Arthritis Day” Live Chat hosted by The Positive Pear. It is without question, very possible to live “Chronically Happy, Healthy, Fit & Fab” in spite of battling chronic invisible illness.
“I am still determined to be cheerful and happy in whatever situation I may be, for I’ve learned from experience that the greater part of our happiness or misery depends on our dispositions and not on our circumstances.” First Lady ~Martha Washignton~
(All rights reserved. Please feel free to share this article in its entirety, excerpts or links provided full & clear credit is given to The Positive Pear Blog)
Today is both Fibromyalgia & Chronic Fatigue Syndrome (CFIDS/CFS/ME/MCS) Awareness Day. The purpose of awareness days is to educate, draw attention, dispel myths and to offer support to those who battle these conditions each day of their lives. The Positive Pear provides information on these conditions as well as, methods for living with & coping with these invisible chronic illness positively, naturally & holistically. Sending many healing hugs & amazing positive energy to all who are battling these chronic conditions. Remember it is possible to live Chronically, Healthy, Happy, Fit & Fab!!
The first ever World Autoimmune Arthritis Day (WAAD) is taking place on Sunday May 20, 2012. In addition, an international awareness effort & virtual convention involving Health Activists from all over the world, will take place beginning Saturday May 19th @ 3:00am and running through Monday May 21st @ 2:00am. I’m honored and very excited to have been asked by Tiffany Westrich, founder/CEO of the International Autoimmune Arthritis Movement (IAAM) and Event Coordinator of the World Autoimmune Arthritis Day event, to participate. I will be hosting a chat session entitled “Being Positive when Living with a Chronic Illness” As anyone who reads “The Positive Pear Blog knows, this is a subject that I discuss regularly through the articles that I’ve written and the quotes that I post. A positive mental attitude and emotional well-being are essential to our overall health and especially for anyone battling invisible chronic illness. We’ll discuss ways in which we can maintain our positive mental attitude using (4) essential elements that are to crucial maintaining balance in our lives. In spite of living with numerous symptoms relating to chronic conditions such as pain, fatigue and depression, among others. Many of these methods are categorized here within the archives and pages of this blog, but I look forward to discussing some of the specific ways in which we can effectively become “Chronically Happy, Healthy, Fit & Fab” during this live discussion.
This is a groundbreaking event, spotlighting awareness and offering educational materials for those affected by serious and sometimes life threatening diseases. It is also completely “Free” and open to all. Be sure to register for this event at: http://worldautoimmunearthritisday.org/registration then join me on Saturday, May 20th @ 6am Pacific Time/ 9am Eastern Time, USA which is also 1am Monday the 21st in the first global time zone (New Zealand) and 2pm Sunday in the UK.
Our lives can sometimes be a reflection of our attitude, actions and the choices we’ve made. We are all too familiar with the term “Karma” and how it relates to the type of energy that we put out into the world and much like a boomerang, that positive and/or negative energy can return to us. Knowing this encourages many to live a life that includes being kind to others, while others in spite of knowing this, still choose to be harmful at every turn. A good person recognizes the powerful forces of Karma, but their lives accurately reflect what is truly in their hearts, even without the existence of these universal principles. There are of course exceptions to the rule, because we know that are times when good things happen to bad people and bad things happen to good people. This is proof that not everything in life is a direct reflection of cause and effect, or action and reaction. These are examples of things in life that we simply can not control, but we can control the type of energy that we choose to exude and pass onto others. We can also choose the type of energy in which we surround ourselves through our association, by perhaps selecting people with a higher sense of consciousness, rather than allowing some to simply fall into our lives by default. When choosing to add people to our support systems, we want to make sure that these individuals are in fact supportive, loving, kind, selfless and above all, positive in their thoughts and deeds. I also think that these individuals poses inner peace, greater awareness, intellectual & moral enlightenment, profound knowledge and a strong sense of personal growth. These are the types of people who are full of and surrounded by positive energy, rather than a cloud of drama. They have positive attitudes which allows them to cope rationally with just about anything that comes their way. These individuals are not victims in life, they get angry but they choose not harbor resentment and as a result, you’ll never see them engaging in competitive, vindictive or spiteful behavior. They live & love by the high standards of their personal code and they enjoy all that life has to offer. Yes, they get knocked down, but they easily recognize that there is an ebb and flow to life, so they recover in tact and often better and stronger than they ever were. We all desire a life that is full of love and we all truly want to be loved by all around us. We have the power of choice to make this happen and we can take one major step toward living this loving and very fulfilling life by being positive, and surrounding ourselves with positive people. Sending peace, light & love to you wonderful, healthy people who read this blog. In addition, positive healing energy to all of the beautiful people who are fighting the difficult battle of living with Invisible Chronic Illness.
Health Activist Roundtable on Ankylosing Spondylitis:
On April 27th, I had the pleasure of participating in a Rountable discussion with two fellow advocates from the Ankylosing Spondylitis community. It was a great having the opportunity to discuss the myths that are associated with this disease, while providing accurate information, in an effort to dispel some of these myths. We also discussed the needs of the community and what we offer individually through our blogs & other social media platforms that we each use. Some of the tidbits from the discussion are posted on the WEGO Health Blog and I’ve re-blogged their post here:
“May 5th marks World Ankylosing Spondylitis (AS) Day, and in order to spread awareness, WEGO Health recently held a Health Activist Roundtable with several leaders of the online AS community. In line with WEGO Health’s mission to set the record straight this month, AS Health Activists debunked myths and misconceptions and shared their hopes for increased awareness both amongst AS’ers and in the medical community at large”
What AS Health Activists want YOU to know
- Awareness is the number one priority of the AS community. Many people suffer from this disease and yet no one knows about it. Patients often know more than their doctors, who often lump AS in with RA.
“I think people need to be clear about the precise symptoms that go along with AS and how it’s different from chronic fatigue syndrome and fibromyalgia. Mental health and living with chronic illness is also an important topic that should be covered.”
- For those living with AS, your rheumatologist might not have all the answers. Because AS shares symptoms with CFS and fibromyalgia, an internal medicine doctor may have better tools to deal with those symptoms.
- Complementary therapies, including regular exercise and dietary changes, can HELP to naturally manage AS, but everyone responds to these interventions differently.
“The difference that I have run into is people not understanding the difference between autoimmune arthritis and degenerative arthritis. AS doesn’t just affect the joints, but also the internal organs. The eyes, heart, lungs, liver, stomach can also be affected by the disease. We need to talk about this outside the pain that we’re experiencing on a daily basis.”
Myths and Misconceptions about Ankylosing Spondylitis
Myth: Ankylosing Spondylitis (AS) is the same as Rheumatoid Arthritis.
Fact: AS shares many symptoms with RA, as well as Chronic Fatigue Syndrome and Fibromyalgia. AS differs in several ways, primarily in that it can result in “fusion” of the spine.
Myth: AS is a rare disease.
Fact: “This disease isn’t rare but the disease isn’t well known. 33 million people around the world have spondylitis but it’s very isolating, I’ve never met anyone with it. The majority of the time we know even more about the disease than the doctor does.” – Kelly (@Hope4AS)
Myth: AS is a man’s disease.
Fact: AS does not discriminate by age or gender. Women are often misdiagnosed or underdiagnosed.
Thanks so much to all the Health Activists that participated, we hope that this Roundtable will help you to spread AS awareness and can’t wait to hear about all of your efforts today for World AS Day! We hope you’re wearing blue today!
May is mental health awareness month. Our mental health is an aspect of invisible chronic illness that we can easily overlook, because we’re busy focusing on the pain, discomfort or numerous other symptoms that accompany our autoimmune disease or chronic conditions. We must keep in mind the importance of paying close attention to our mental and emotional health, as well as our physical well-being. Depression is not only a symptom of conditions which affect the brain, such as Fibromyalgia and Chronic Fatigue Syndrome, or a symptom of conditions that affect mobility such as autoimmune arthritis, it’s also one of the leading causes of disability effecting approximately 120 million people worldwide. Being able to recognize the signs of depression and having a well established support system is incredibly important. Symptoms of depression include: anxiety, persistent sadness and hopelessness, loneliness, sense of loss, withdrawal from friends & loved ones, isolation, loss of interest in activities, enjoyment, feelings of guilt, low self-worth, sleep disturbance, disruption in appetite, low energy, and poor concentration. There are ways in which we can manage our own symptoms of mild depression and these methods also work with antidepressants and anti-anxiety medications. Such as exercise, yoga, meditation, lifestyle management, stress management, balanced whole-food nutrition, and nutritional & herbal supplements. Within our support systems it is incredibly important to also include a mental health professional who is capable of easily recognizing when depression exceeds our ability to self manage, in which case medication or psychotherapy might be needed.
It’s hard to believe that this awareness effort has been underway since 1949, especially since mental illness was incredibly taboo until recent years. We are so fortunate to live in society where advocacy is alive and well. Education is at our finger tips and we can openly discuss invisible chronic illness in all of its forms. Along with Depression & Major Depression also known as Major Depressive Disorder (MDD) & clinical depression, there are numerous other mental disorders which fall into the category of mental health and require awareness such as: ADHD, Generalized Anxiety Disorder GAD, Panic Disorder, Eating Disorders, Asperger’s Syndrome, Autism, Bipolar Disorder, Conduct Disorder, Borderline Personality Disorder (BPD), Dissociative Disorders, Obsessive-compulsive Disorder (OCD), Oppositional Defiant Disorder (ODD), Phobia, Reactive Attachment Disorder, Post-traumatic Stress Disorder (PTSD), Schizophrenia, Self-injuring Behaviors, Social Phobia and Tourette Syndrome.
1st week in May is National Children’s Mental Health Awareness Week
The entire month of May is Mental Health Awareness Month