Category Archives: ankylosing spondylitis
A new study performed by the University of Colorado Boulder and published April 2013 in the European Journal of Neuroscience, shows that even when you dislike exercise, or you’re forced to engage in it by a doctor or fitness instructor that you will still reap the amazing benefits. Many past studies have shown that people who engage in regular exercise are protected against stress related disorders, but scientist wanted to know if the same results were present when the perception of control was removed. Why this study was needed I have no idea, but it’s nice to have additional scientific proof as to the benefits of exercise. In the study performed by researches to attain these results, it was noted that the sedentary rats, the rats who sat on the sofa and watched TV or surfed the web all day, froze when faced with stress. The longer they remained embolized by fear, the more residual anxiety they experienced. Those rats who ran on mechanized wheels, on a regular, predetermined schedule for a period of 6 weeks, never experienced the “deer in headlights” syndrome and managed their exposure to stress much better. What does the study prove? Well, if you are a healthy person who is exposed to high amounts of stress in your daily life, or you are prone to anxiety and depression as with those who battle Fibromyaglia, Chronic Fatigue Syndrome, Ankylosing Spondylitis and many other invisible chronic illnesses, you will find that you are better equipped to manage daily stress and symptoms such as anxiety and depression with regular & consistent forms of exercise. So Let’s Get Moving & keep it moving for a minimum of 6 weeks!!
If you or someone you know suffers from a invisible chronic illness you may not always know exactly what to say, or you might be surrounded by friends and family members who may not always have the perfect words to encourage you, though they love and support you. I not only suffer from autoimmune disease and other chronic conditions, but I know of others who battle invisible chronic illness well. There are times when I feel that I know precisely what to say because I’m a fellow sufferer, but there are also times when I’d simply prefer to just give these friends a huge hug to let them know that everything will be OK. I also envision these hugs being powerful in their healing abilities, thus rejuvenating my friends and family members who suffer, so for one brief moment they’re able to put the symptoms of their physical ailments aside to deal with other matters of life which also need their attention.
I began to ponder how I could reflect the impact of such a hug in words, especially since many of my friends are in other parts of the country and in other parts of the world. This is when I came up with “The Holistic Healing Hug” holistic meaning “whole body wellness” combined with a hug that heals….a perfect combination. To my surprise my family was not only excited that I’d come up with this idea, but they also seemed relived to have something prepared to give me when they felt compelled. My daughter printed out “The Holistic Healing Hug” and put it on the wall of my office and at that point I knew just how powerful these words could be for others out there who also have loved ones who battle invisible chronic illness, so I’m sharing “The Holistic Healing Hug” with all of you. Please feel free to share this post or the picture with anyone you know who could use a “whole body wellness” healing hug to support them in a day of managing their chronic invisible illness. Lots of Love & Many Healing Hugs to You!!
For You My Friend….The Holistic Healing Hug
“I’m giving you this healing hug in hopes that it will sustain and support you through your day. Though it can not actually heal you, perhaps it can reinvigorate you while allowing peace to flow through you. Giving you the opportunity to mend that which is broken, while enabling you to harness the rejuvenating power which dwells within you. May you feel loved & supported by all around you through the embrace of this holistic healing hug.”
To share from this post simply click one of the “sharing” buttons below. You can also place this picture on the wall or timeline of a friend via The Positive Pear Facebook Fan Page.
An autoimmune disease & chronic inflammatory condition such as Ankylosing Spondylitis has its fair share of symptoms, so it’s incredibly discouraging to discover that AS sufferers are also susceptible to a multitude of other conditions. When you add incredibly strong medications to this equation, the potential for developing other chronic conditions increases considerably. These are some of the other chronic conditions that Ankylosing Spondylitis patients who are taking Remicade, Humira, Enbrel, Fenofibrate, Polaramine, Oxycontin, Novorapid, Percocet, Levemir and Naprosyn most often developed while on the above meds:
Acute Pancreatitis (Inflammation of Pancreas)
Type 2 diabetes mellitus (NIDDM/Adult Onset Diabetes)
Diabetes mellitus (DM Covers many forms of Diabetes)
Peripheral vascular disorder (PVD)
Gastrooesophageal reflux disease (GERD)
Hypertension (High Blood Pressure)
Autoimmune thyroiditis (Inflammation of the Thyroid)
Gastritis prophylaxis (Disease of the Stomach/Inflammation of Mucus Membrane)
When you open the informational packet which is usually enclosed with your meds, you read of the many potential side effects and most often discount the risks for experiencing them (or) side effects such as these aren’t included because many who develop these additional conditions feel that they are unique and independent of their meds, disease or condition, so connections aren’t made and often not reported. These connections are also not made frequently by doctors. However, many AS patients who are on these medications have these conditions. This should be enough to point your doctor in the right direction, if you are experiencing related symptoms.
There really is no win/win when it comes to medications there are either numerous side effects or after becoming quite dependent upon them they simply cease to work, because as the body metabolizes these substances, it also builds up a tolerance. However, knowing of these additional risks prior to taking medications is incredibly helpful, because it arms patients with the knowledge they need to better care for themselves. For example knowing that you are at a higher risk for diabetes might motivate you to exercise daily and eat healthier foods. Such as eliminating simple carbs, sugars and starches. This knowledge might also motivate others who are in the position do so, to manage their disease without the use of the harsh medications, while also embracing the importance of a “whole body” approach. I was fortunate enough to have several years of experience with natural, more healthier options to manage my AS and my exposure to Naprosyn was limited, but that does not mean that I’ve come away completely unscathed, because often the side effects from these medications are irreversible. I discontinued Diclofenac (a form of Naprosyn) after experiencing Gastritis prophylaxis, as a result of H. Phylori, a stomach infection. Accompanied by my frustration with dropping 30 lbs, a year with severe stomach pain, no diagnoses and the fact that several specialists had no clue as to why I was so sick. Well, it was quite easy for me to connect my new, debilitating symptoms to the medication. I also have additional symptoms to manage now, that I did not have prior to taking this medicine for several years.
I respect the extensive knowledge and medical training of my Rheumatologist, and completely understand that his recommendations were “medically” based and as a result I was convinced like perhaps many AS sufferers, that it was impossible to manage this disease without meds. However, I’m living proof that this is in fact not true at all. If we’re willing to step outside the “medicine box” we can find many natural solutions. Of course needs & results will vary from person to person, but I’ve done quite well with a healthy eating regimen (low-carb, low-starch, no-dairy, no-gluten), regular exercise and by controlling both my pain and inflammation with natural Cox 2 Inhibitors. Patients need to know that they have options, prior to subjecting their bodies to these numerous side effects, and this is precisely what motivated me to launch The Positive Pear.
Happy October! Summer is my absolute favorite time of year, but nothing compares to New England Fall foliage. The colorful leaves are nothing short of amazing and “may be even more attractive than the many beautiful flowers of Spring.” I hope you’re also enjoying all of the beauty that Fall has to offer. Here on the East Coast the weather is changing, the mornings, days and evenings are cooler forcing us to break out the Fall gear, including cute scarves and fashionable boots. This is also the time of year that we tend to gravitate toward heavier foods. Since we’re in the midst of a change in season, I thought it was a good time dust off the keyboard to discuss how we can adapt our healthy eating regimen to include foods that are currently in season. All of this made me think of carbohydrates and the excessive consumption that traditionally takes place over the next few months. Carbs can become a real issue for many during this time of year because as the temps drop and the holidays draw closer, many tend to turn to high calorie, high carbohydrate, comfort foods, such as breads, pizzas, pastas, baked goods and additional sugars. These types of foods can not only lead to excessive weight gain, but also the potential for exasperating symptoms of many chronic conditions such as asthma, eczema, diabetes, chronic pain & inflammatory conditions such as Ankylosing Spondylitis, chronic pain conditions such as Fibromyalgia and the numerous symptoms relating to Chronic Fatigue Syndrome, among other conditions.
I believe it’s fairly common knowledge even among the healthiest of people, that an overindulgence in carbohydrates and processed foods can lead to health problems, so naturally this becomes more of a concern among the many people who battle chronic illnesses. We are the group who should pay extra special attention to what we eat, how our bodies process these types of foods and how they affect our symptoms. Many people don’t want the burden of adjusting their diets. After all, food not only provides sustenance, it’s a way of celebrating life, entertaining with family and friends and its also a means for socializing, so it’s no secret that eating your favorite foods offers a fair amount of enjoyment and emotional satisfaction, which is where the idea of “comfort food” stems. However many who live with debilitating and painful conditions do not have this luxury. We must be careful to avoid buying into the brain washing that many of us have fallen victim to at some point in our lives, and that’s the idea that medication is a “magic bullet” and it is all that we’ll ever need to fight our symptoms and keep ourselves healthy. If you are on medication your body is already working hard enough to break down and distribute this foreign substance, so its best to eat healing foods that will help strengthen your body, rather than filling your stomach with foods which force the body to work harder. All while taking the place of vital nutrients, that you are quite possibly loosing due to malabsorption issues associated with your chronic invisible illness. ”Food is very powerful. Consuming the right foods can be incredibly healing to our bodies, but eating too much of the wrong types of food can easily lead to our premature, yet slow and even painful demise.” If you are a healthy person be grateful and don’t take it for granted, because it could all change in an instant. It’s been my job for so many years to educate people about food, healthy eating, the prevention of aging related diseases and most recently how to manage the symptoms of many chronic invisible illnesses naturally and holistically, so I direct this post to those who would like to take control of their health, by taking control of their diets, as apart of a “whole body” approach to living a healthy lifestyle.
Dangers of Overindulging in Simple Carbs, High Glycemic & High Starch Foods:
All carbohydrates are not bad. In fact, the quality of carbohydrates is actually what matters most. Carbohydrates are divided into two categories, simple carbs and complex carbs. Complex carbs are best and when eating simple carbs it must be done so in moderation, because overindulgence can wreak havoc on the body. Simple carbs consist of high glycemic foods which increase serum levels of C-reactive protein (CRP) a marker of systemic inflammation, which would naturally effect chronic inflammatory conditions such Ankylosing Spondylitis & other forms of autoimmune arthritis. These high glycemic foods also increases the risk of cardiovascular disease and if you are obese or even simply overweight due to excessive simple carb consumption, you’re increasing these risk factors even more. Complex carbs or lower dietary glycemic foods provide more of a sustained blood glucose level and lower insulin demands on the pancreas. The pancreas aids in digestion and controls blood sugar. If the pancreas and adrenal glands are constantly overworked due to consistent high glucose levels, this can not only contribute to adrenal fatigue & chronic fatigue in a healthy person, but it will without question exacerbate the symptoms of Chronic Fatigue Syndrome, also known as Chronic Fatigue & Immune Dysfunction Syndrome (CFS/CFIDS/ME) along with other conditions which cause fatigue, such as the many forms of autoimmune arthritis. This can also lead to digestive disorders such as Irritable Bowel Syndrome, while worsening symptoms of irritable Bowel Disease. Poor diet combined with regular medication usage significantly increase these risks. Good carbs or low-glycemic index foods delay the return of hunger, decrease subsequent food intake, and increases the sense of feeling full and as a result helps one to control their weight. Focusing on healing, whole foods and a diet which contains lower dietary glycemic foods and minimal amounts of sugar/starches will help to minimize symptoms of many chronic invisible illnesses, as well as preventable diseases such as Hypoglycemia, adult-onset Diabetes, Cardiovascular disease, Obesity, Gallbladder disease to mention a few.
Steps Toward Success:
• Decreaes your consumption of starchy high-glycemic index foods like potatoes, white rice, and white bread
• Decrease your consumption of sugary foods like cookies, cakes, candy, and soft-drinks
•Increase your consumption of whole foods, real food in lieu of fast foods and eat balanced amouts of lean protein if you eat meat
Some Good Traditional Complex Carbs/Low-Gylcemic Index Foods for Healthy People:
whole grains, nuts, legumes, fruits, and non-starchy vegetables (no rice, corn, potatoes etc.)
• Try Sprouted Ezekiel Bread in place of white bread
• Try zucchini strands in place of pasta
• Add lots of low-starch, nutrient dense, organic vegetables in place of large amounts of starchy high-glycemic index foods, such as: Romaine Lettuce, Radishes, Avocado, Sprouts, Napa Cabbage, Kale, Spinach, Chard, Bok Choy, Snow Pea Pods, Green Beans, Leeks, Cauliflower, Broccoli, Asparagus, Summer squash, Red, Green & Yellow Bell Peppers, Artichokes, etc.
• Make good use of fresh herbs, flavorful ingredients & seasonings such as: Lemon, Lime, Garlic, Ginger, Onions, Cilantro, Parsley, Basil, Thyme, Scallions, Organic Balsamic Vinegar, Brown Mustard, Fresh Salsa. etc.
• Drink water, coconut water, fresh fruit smoothies, freshly squeezed juices and herbal teas in place of soft drinks and other high calorie drinks
• Eat fresh & dehydrated fruit such as; oranges, plums, berries, pears, apples, grapes etc., in place of cakes, cookies, ice cream and candy. You must still be mindful of eating sweets in moderation, just because it’s healthy doesn’t mean it’s ok to in excess. Remember balance is key.
• Eat healthy snacks dried or roasted seaweed snacks, almonds, seeds, chia, raw caco, dried mulberries, etc.
• Cook at home, prepare meals in advance and get creative! By eating at home you are automatically reducing your daily sodium consumption and daily calorie intake.
“Eating this way will not fill me up” When taking on this lifestyle change, take baby steps. Start by reducing, then replacing NOT immediately eliminating. For example reduce the number of meals each day that contain simple carbs, if you have a high carb breakfast do no repeat this for lunch & dinner. When you get to the “replacement” stage, you could replace your white bread with Ezekiel bread (made from sprouted grains), replace butter with Organic Cold Pressed Olive Oil, replace pasta with zucchini strands and make your own salad dressings from scratch. Start your day with fruit and eat several small meals each day. Eat several small meals and be sure that you do not reduce your calorie intake below 1200 calories a day, 1500 if you’re very active. Yes, you’ll count calories for a few days, but you’ll eventually have the feel for how much food you’ll need to consume to stay full and remain healthy. At dinner make sure your plate has far more veggies than meat and when eating meat, make sure its lean and antibiotic free. If you have Ankylosing Spondylitis or FIbro & CFS which can react adversely carbohydrates, you might need to also reduce intake of even certain types of complex carbs such as grains, thus gravitating toward more of a low-starch eating regimen. Give it time, both your mind and body will adjust. Also exercise and drink lots of water. Get plenty of rest and supplement when needed. In addition, when you’re eating whole foods, you’ll find that you’ll have less cravings, because you’re body’s nutrient requirements are actually being met.
“Eating this way will not cure my disease so why bother?” Diets, foods and drinks don’t cure disease, especially autoimmune diseases, but when eating the right foods you can prevent the onset of certain types of disease especially those that are age related. In addition, eating healthier can also help to reduce certain symptoms of many chronic conditions.
“In order to eat low-carb or low-starch, I have to eat excessive amounts of meat.” No, not at all and in fact most Americans eat far more protein than their bodies truly need. Protein consumption will vary from person to person based upon their weight and level of daily activity. A 130 lb woman who engages in moderate daily exercise would require only 88 grams of protein daily and that’s divided over several meals. A 160 lb man who exercises regularly, including strength training would require only 108 grams of protein daily. Someone who does not engage in regular exercise would have less protein demands.
low-carb and low-starch are the basis of many fad “diets” however, that does not invalidate the effectiveness of this way of eating. That’s because there are many conditions that benefit from a reduction of simple carbs and even some complex carbs. I do not endorse or promote fad “diets” or a book written by some guru. I do however recommend a lifestyle change to my clients based on their specific needs. Diets fail, but lifestyle changes that include a healthy eating regimen, exercise and whole body wellness are incredibly effective with the ability to last indefinitely. Feel free to use this post a guide and whatever dietary changes you decide to make, be sure that its healthy and that you’re taking in the proper amounts of daily calories, also that you’re getting all of your required vitamins and minerals. Balance out your healthy eating regimen with exercise and most importantly maintain a positive mental attitude!
Here’s to living Chronically, happy, healthy fit & fab!!
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)
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!
Amino Acids are protein building blocks and proteins are the building blocks of life itself. There are 20 which are crucial to human heath, relating to growth, repair, and maintenance of body tissues. Nine of these amino acids are considered essential and required through proper nutrition, which will enable the body to produce the required protein. These are: leucine, isoleucine, valine, lysine, threonine, tryptophan, methionine, phenylalanine and histidine. The eleven non-essential amino acids are arginine, alanine, asparagine, aspartic acid, cysteine, glutamine, glutamic acid, glycine, proline, serine, and tyrosine.
Many non-essential amino acids may not be required for protein building, but through much research it has been discovered that they are instrumental in healing and relieving symptoms of many conditions, thus used therapeutically. Many with chronic health conditions often have deficiencies of both essential & non-essential amino acids. Conditions and symptoms such as, Allergies, Ulcers, Anemia, Osteoarthritis, Autoimmune Arthritis such as Rhumatoid Arthritis & AS, lupus, cerebral palsy, certain cancers, depression, cognitive issues, insomnia, anxiety, panic attacks, associated with CFIDS (chronic fatigue and immune dysfunction syndrome), musculoskeletal pain and discomfort associated with Fibromyalgia, Ankylosing Spondylitis, IBD, ADD (attention deficit disorder) & ADHD (attention deficit hyperactivity disorder), as well as others. Amino acids work synergistically with many drugs and treatments, so interactions are not ordinarily a concern, but if you have decided to supplement with amino acids, your doctor should be informed. A few Therapeutic aminos are L-histidine, L-Carnitine, L-Taurine & L-Tyrosine. L-Trosine is often low in individuals battling depression, as well as those suffering with kidney disease. L-Theanin is found in green tea and is said to help relieve the symptoms of stress and anxiety, while enhancing focus and concentration. Which is perfect for those who are cognitively challenged, as with ADD & ADHD, Chronic Fatigue & Fibromyaglia.
Nine of the essential amino acids can be found in protein rich foods such as red meat, poultry, seafood and dairy products. Plant foods, such as vegetables, fruits and grains, will only provide some of the nine essential amino acids. For this reason, a vegetarian diet should be balanced to ensure that amino acids are derived from all parts of the diet. Vegetable sources of protein such as nuts, beans, and grains are incredibly healthy, because they not only provide amino acids, but additional nutrients such as fiber, vitamins A and C.
If you are able to eat and digest protein rich foods such as meat, poultry, seafood & dairy products then you are more than likely getting your required amounts of amino acids. However keep in mind that many chronic health conditions can prevent absorption of many vitamins, minerals and amino acids through food intake, so supplementing might be required. Since our protein requirements are actually lower than most people consume, below are many fruit & vegetables sources of amino acids which you can easily add to your existing diet:
PLEASE NOTE: This is not a low-starch or low-carb food friendly list, rather its to provide overall information on foods which are high in amino acids.
Alanine – Main source being alfalfa, but also found in: celery, carrot, lettuce, cucumber, turnips, green pepper, spinach, plums, apples, guavas, grapes, oranges, almonds and strawberries.
Arginine – alfalfa, carrots, green leafy vegetables, beetroots, cucumber, celery, lettuce, radishes and potatoes.
Aspartic acid – carrots, celery, radishes, cucumber, mint, tomatoes, turnips, lemons, grapefruit, apples, plums, pineapples, melons and almonds.
Cystine – alfalfa, beet roots, carrots, cabbages, cauliflower, onions, garlic, apples, pineapples, raspberries, raisins.
Glutamic acid – found in carrots, turnips, cabbages, celery, beetroots, mint, lettuce, spinach and papaya.
Glycine – carrots, turnips, celery, mint, alfalfa, spinach, garlic, potatoes, figs, oranges, raspberries, pomegranates, melons and almonds.
Histidine – radishes, carrots, cucumber, beetroots, celery, garlic, onions, turnips, alfalfa, spinach, pineapples, apples, pomegranates and papaya.
Hydroxy glutamic acid – carrots, mint, lettuce, spinach, tomatoes, grapes, raspberries, plums.
Hydroxy praline – carrots, lettuce, beetroots, turnips, cucumber, plums, cherries, figs, radishes, grapes, olives, pineapples, almonds and coconut.
Lodogorgoic acid – carrots, celery, spinach, tomatoes, lettuce and pineapple.
Isoleucine – papaya, olives, coconuts, almonds, apricots, pistachios and walnuts.
Leucine – coconuts, almonds, apricots, papaya, olives, pistachios and walnuts.
Lysine – carrots, cucumber, beetroots, mint, celery, spinach, turnips, alfalfa, germinates soyabeans, plums, pears, papaya, apple and grapes.
Methionine – cabbages, garlic, cauliflower, pineapples and apples.
Norleucine ( NLE a form of lucine)
Phenylalanine – carrots, beetroots, spinach, mint, tomatoes, pineapples and apples.
Proline –carrots, beetroots, lettuce, turnips, cucumber, plums, cherries, figs, grapes, olive, oranges, pineapples, coconuts and almonds.
Serine –radishes, garlic, onion, carrots, beetroots, celery, cucumber, mint, spinach, cabbage, alfalfa, papaya, apples and pineapples.
Threonine – carrots, green leafy vegetables, alfalfa and papaya.
Thyroxine – carrots, celery, lettuce, turnips, spinach, tomatoes and pineapples.
Tryptophane – beetroots, carrots, celery, spinach, alfalfa and turnips.
Tyrosine – alfalfa, carrots, beetroots, cucumber, lettuce, mint, spinach, green pepper, plums, strawberries, cherries, apples, melons, figs and almonds.
Valine – carrots, turnips, sweet gourd, celery, mint, beetroots, tomatoes, apples, pomegranates and almonds.
When supplementing look for free form amino acids and you’ll want products with a full amino acid profile, many will read “amino acid complex.” such as with protein powders or protein drinks. Amino acids work synergistically with vitamins and minerals, thus working naturally with our bodies. Though it is preferred that we obtain vitamins, minerals, as well as amino acids through our diet, when we are chronically sick or have malabsorption issues such as those related to chronic inflammation & IBD, supplementing just might be required. Be careful of taking excessive amounts of amino acids and be sure to follow label instructions.
Food based Amino Acid Supplements: Braggs Liquid Aminos NON-GMO soy (contains 16 amino acids/8 essential.) This product is great to use in place of regular and potentially GMO contaminated soy sauce. Should not be cooked or heated.
Coconut Aminos by Coconut Secrets contains 17 naturally occurring amino acids. Nutrient-dense, certified organic, dairy free, gluten-free, soy-free and raw-vegan friendly.
By ensuring that you are eating foods that are high in amino acids, or that you are supplementing via a well balanced protein powder or free form amino acids, you are improving your chances for optimal health, greater energy, strength, recovery, improved muscle definition, beautiful skin, better mood, better memory and enhanced brain function. Incredibly beneficial in combating fibrofog, pain and stiffness relating to Ankylosing Spondylitis and the multitude of symptoms associated with Chronic Fatigue and Immune Dysfunction Syndrome, including depression.
Amino Acids, Angelo P John research based on amino acid cancer therapy, amino acid, amino food guide courtesy of Naturopathy for Perfect Health. The Healing Power of Organic, Real Food, Superfoods & Whole Foods, Nutritional, Gluten-Free, Diary-Free, Low-Starch & Inflammation Friendly Recipes
Since I’ve lived with the physical symptoms of Invisible Illness for many years, 2012 is really about coping emotionally and mentally with the idea of living with more than one.
I was devastated upon discovering that I have a chronic pain condition known as Fibromyalgia, along with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). In addition to overwhelming anger, frustration and a sense of loss. Realizing that it was now highly unlikely that I would return to being my old self again. The person who was healthy, vibrant, full of life, strong and athletic. I think that most people would be thrilled to finally have a name for conditions that plagued them for many years, but for me I have been there and done that. Nearly 8 years ago, I was ecstatic to discover the name for the chronic inflammatory condition which had plagued me since childhood, Ankylosing Spondylylitis. I felt relieved to finally know and to have a course of treatment. However that excitement was short-lived, because I had no way of knowing that a long time acquaintance, but newly found friends Fibro & CFIDS would sneak in to steal my joy.
The Fibro & CFIDS diagnoses did not yield the same excitement, because I’d been waiting out what I thought was a long bout with active AS, hoping that it would go back into remission as it had in previous years and I would quickly return to being my old self. Its quite interesting what keeps you going and when you no longer have that small bit of hope to hold on to, it can be quite devastating. Awareness is crucial, because upon realizing that the many symptoms, even things that I didn’t realize were symptoms, that I”d lived with for as long as I can remember were not in fact normal, I could easily trace fibro & CFIDS back to my teens. Only a few short years after my first AS flare. However, as with my AS the Fibro & CFIDS symptoms had gone into remission several times.
Denial has no place in chronic illness, as I recall a conversation with my Rheumatologist several years ago. It was exactly 1 year after being officially diagnosed with AS, discovering NSAIDs, exercising several days a week, eating well and being in a very good place both mentally & physically. I was unfortunately in a terrible car accident, which totaled my car leaving me with a concussion, severe case of sacroiliitis, an arm that I could barely use and severe, chronic hip, neck & back pain. A car accident is your worst fear as an AS patient, because of the risk of exacerbating your AS symptoms. Shortly after the car accident, I lived with chronic musculoskeletal pain that NSAIDs were no longer helping, along with severe fatigue and stomach upset (IBS), my Rheumy told me that it sounded as if I might be developing Fibromyalgia. However, I had no knowledge of Fibro at the time, so I could not agree or disagree, on weather or not I felt that my symptoms were a match. I was also in a bit of denial and did not want to take on managing another chronic illness. My Rheumy further stated that it was not uncommon for AS patients to go on to develop Fibro and especially after experiencing trauma, such as my recent car accident, and this was more than likely a conversation that we would continue during future visits. Unfortunately, my Rheumy passed away, so there were no future conversations. If only I’d been aware that the multitude of symptoms that I’d lived with for many years, were related to one another and related to both Fibro & CFIDS I would have had my answers much sooner.
Honing in on my chronic and incredibly debilitating fatigue is what finally began to give me answers. I’d also been coping with being cognitively challenged for many years, long before the car accident, but during the last 9 years many of my symptoms were getting worse. Old symptoms were returning like migraines and tension headaches, while others symptoms were bringing no relief, such as the severe neck and back pain, muscle spasms, food intolerance & chronic pain in other areas of my body. It was only very recently that I myself began to connect the dots. After much research, I could see that they were many overlapping symptoms, AS overlapped with Fibro, Fibro overlapped with CFIDS and so on. I could also see that I had symptoms relating to hypothyroidism, due to unexplained weight gain, cold intolerance, dizziness, fatigue, etc and due to the progression of what I now know to be Fibromyalgia & Chronic Fatigue and Immune Dysfunction Syndrome, I also discovered that I had IBS which was aggravated by diet, food intolerance and stress. My monthly cycles were also unbearable (since my teens), while many symptoms of both Fibro & CFIDS were in full effect. (the entire list below)
I’ve always been a very private person, even refraining from sharing some of my symptoms with my doctors and honestly I never thought tell my Rheumy that I had insomnia, cognitive dysfunction, anxiety & stress, nor did he ever ask. I’ve only recently begin speaking publicly regarding my health issues and many who’ve known me for years, were very surprised that I had a condition and others who I’d confided in were surprised that I began to share. I found that writing about having Ankylosing Spondylitis proved to be incredibly therapeutic. Once I began sharing my AS symptoms publicly, I began to realize that many of my symptoms where not AS related at all. Though a few AS symptoms do indeed overlap with Fibromyalgia & CFIDS , these are ugly chronic conditions all their own. It took many years to arrive here, discovering that CFIDS needed to be addressed by an Internal Medicine Physician, while Fibro needed a diagnoses from not just any Rhumatologist, but one very knowledgeable about and experienced with Fibromyalgia. It also helped that I could clearly articulate my symptoms, while understanding how they overlap and how they differ:
My Symptoms of Fibromyalgia :
Profound, Chronic & Widespread Pain
Stabbing/Shoot Pain/Deep Muscular Aching, Muscle Spasms, Throbbing & Twitching
(Nerological) Numbness, Tingling & Burning
Symptoms Aggravated by Cold/Humid Weather
Physical & Mental fatigue following excessive physical activity/Physical inactivity
Reduced tolerance to exercise & Muscle pain after exercise
Fatigue, profound exhaustion & poor stamina
Sleep disturbance/ Stage 4 deep sleep/interrupted by bursts of awake-like brain activity
Fibromyalgia & CFIDS/CFS Overlapping Symptoms::
Migraines & tension headaches
Vision Problems/Visual blurring
(Parasthesias) Numbness & Tingling face, arms, hands, legs and feet
Not feeling rested upon waking
IBS (abdominal pain, gas, bloating, nausea, constipation/diarrhea)
(Nocturia) Bladder disturbance (overactive/irritable)
Cognitive dysfunction Impaired Memory & Concentration (Brain-Fog *Fibro Fog)
Ringing in the ears (Tinnitus)
Worsening of symptoms due to extremes in temperature
Restless Leg Syndrome/Leg Cramps
My Symptoms of Chronic Fatigue and Immune Dysfunction Syndrome CFS/CFIDS/ME:
Relapsing & Debilitating Chronic Fatigue
Extremely painful menstrual cramps
Allergies & Sensitivities to chemicals & medications
Sensitivity/Intolerance to: noise/sound, odors, bright lights, foods & cold
Multiple sensitivities to medicines, foods, and chemicals
Tender lymph nodes in the neck & underarm area
Dyspnea (labored breathing or hunger for air) on exertion
Frequent Flu like symptoms
Chest pain, Nausea & Cough
Frequent sore throats
Frequent canker sores
Low body temperature
Tachycardia/Palpitations (rapid heart beat)
Personality changes & mood swings
Swelling or the feeling of swelling in hands & feet
Tightness & weakness in the limbs
Muscle & Joint Pain without redness or swelling
Fibromyalgia, CFIDS/CFS & Ankylosing Spondylitis Overlapping Symptoms:
Glute, Neck & Back pain
My Symptoms of Ankylosing Spondylitis :
Muscle & Joint Pain
Pain & Stiffness of spine & joints
Chronic Inflammation, neck, back, knees, ankles, heels, hips & chest wall
Potentially HLA-B27 Related IBS
Other Related/Unrelated Conditions that I have:
Hypermobility syndrome (potentially unrelated but suspected to be linked to AS)
When thinking back on when I discovered that I had AS, the feeling was similar to a long walk in an open plain, with daisies, great music, skipping and fun dancing. When discovering that I had Fibromyalgia it was more like those scenes in the movies where the main character is walking around, interacting with the world around him, only to discover at the end of the movie that he’s really dead. What’s worse is that he appears to be the only one who didn’t know. I’ve obviously seen far too many of these movies, because this is what continually flashed repeatedly through my mind, Bruce Willis in “The Sixth Sense,” Anne Hathaway in “Passengers” and Nicole Kidman in “The Others.” As all of the clues relating to their demise, which we of course miss throughout the movie, now flash through their minds and on the screen. This is precisely how I felt, I missed the clues about having Fibromyalgia & CFIDS and there were many, but at least now I know and I can continue to move forward. I will however mourn the loss of my former self, while also mourning the loss of my Rheumatologist. As it is difficult traveling my Fibro & CFIDS journey without him, my doc and my friend. It’s also difficult to imagine my life without the old me. This is solely a mental adjustment, because I have not been my old physical self in quite sometime, but in 2012 I will gladly step up to the challenge of reinventing myself. I am an eternal optimist, I will inevitably make lemonade out of this proverbial Fibro & CFIDS lemon and I will continue to advocate & share my natural, holistic and healthy approach to living with Fibro & CFIDS and subsequent progress as I do with my AS. Through my own very unique journey, I’ve learned that having an invisible chronic illness, or two or three, though incredibly challenging is not at all a death sentence, but another way of living life. Here’s to an amazing 2012, where we will continue living “Chronically Happy, Healthy, Fit & Fab” while coping with Ankylosing Spondylitis, Fibromyalgia & Chronic Fatigue and Immune Dysfunction Syndrome CFIDS.