Moving On: Life With RA & JRA

Twenty years ago, I rode a bicycle or stationary-bike daily. I used to pedal almost effortlessly, for 5-10 miles. And I loved it — lived for it. At home or on vacation, if I could score the use of one, I was pedaling hard. Cycling was something that I couldn’t seem to outgrow. What a difference two decades, age and a diagnosis can make …


Rheumatoid Arthritis (RA) is an autoimmune disorder that causes chronic inflammation of the joints. Without proper treatment, it can wield unimaginable damage, i.e. joint deformities and even disability (in some patients). It occurs when the immune system mistakenly attacks the body’s own tissues. And RA can also impact the skin, eyes, lungs, heart and blood vessels.

Despite the social myth of grannies in rocking chairs, Rheumatoid Arthritis isn’t a disease exclusive to the elderly. It’s very much the opposite. Onset for adults, is usually between the ages of 30-60. In other words, highly productive years. Like other rheumatic illnesses, women are three times more likely than men to be diagnosed. Juvenile RA (also known as Juvenile idiopathic arthritis) is what the disease is referred to when it presents itself in children. There are approximately 300K children, in the U.S., living with JRA. Toddlers, under the age of two, have even been diagnosed with it.

The onset of RA can develop over a matter of a few weeks, or a few months. Many symptoms actually mimic those of influenza. This was my personal experience. It wasn’t until my joints swelled, about 12-14 days later, that I realized I wasn’t fighting the flu.

By now, you may be wondering about heredity. One study showed that genetics played a role in slightly more than half of all diagnosed cases. My great-grandmother, who I barely remember, had Rheumatoid Arthritis. The disease skipped two generations and then found me. It happens. But there are thousands who are diagnosed with no hereditary link. In other words, there is no certainty that having a family member with RA will equate to a diagnosis in you. Even in a study done on identical twins, who share the same genes, only 15% were likely to be diagnosed with RA.

Simple tests like labwork, x-rays, MRI and ultrasound, are used to achieve a diagnosis. Your family physician may order them, or refer you to a Rheumatologist who will do so. Your RF Factor (get used to that term) measures the amount of RF antibody present in the blood. About 70-80% of all adults, who are diagnosed with RA, will have a high RF Factor. Approximately 50% of children will also have it. Those who do are more likely to have RA in adulthood. Some JRA patients can outgrow the disease.

Since RA is considered chronic (lasting longer than 3 mos.), there is no cure. The disease will progress with time. Each patient will experience periods of remission (when symptoms are barely present) and “flares” (when the disease increases its activity within the body).

Treatment for RA and JRA is very similar. Exactly how any patient, adult or child, is treated depends upon the severity of the disease in their bodies. Doctors often prescribe NSAIDs (Nonsteroidal anti-inflammatory drugs) to help reduce inflammation. DMARDs  (Disease-modifying antirheumatic drugs) are also prescribed to slow the progression of the RA. Possibly the most common of these is Methotrexate — a chemotherapy drug. Let that sink in, for a moment. It may be administered orally, by injection, even IV. And it can bring many of the side-effects that are seen in Cancer patients (who are taking much higher doses). Biologic DMARDs, i.e. Orencia, Enbrel, Humira, etc., are also possible treatment options. Your doctor will discuss, at length, which treatment approach is best for you and why. Teens with JRA are typically referred to an “adult” Rheumatologist, around the age of 17-18 years. For many patients, occupational therapy and surgery is sometimes needed as the disease progresses.

I cannot lie to you, or sugarcoat it. RA and JRA changes lives. And this is something that goes beyond the patient — affecting spouses, parents, children, siblings. It can change relationships, at home … at work … at school. It changes the patient’s abilities, mood, even productivity. RA and JRA patients live with pain, lack of mobility, fatigue, the side-effects of medications, trouble sleeping, etc. Some JRA patients have even struggled with Anorexia and growth failure. And children with any chronic illness are often the targets of bullying. This is what becomes the new normal. It is a lot to take in … accept … and manage. Still, it can be done. It’s important to remember that.

Living with RA and JRA is a blend of positives and negatives. For example, healthier eating habits are a positive that everyone can benefit from. Gentle, low-impact exercises are another positive. Patients can feel weather, i.e. rain, even before it arrives. As the barometric pressure drops, their joints swell. They become more sensitive to cold, air conditioning, etc. A study done at Tufts University, back in 2007, revealed that just a drop of 10 degrees increased the pain in rheumatic patients. Negative effects of the disease.

Concessions must be made for a patient to live happier and comfortably, i.e. with the thermostat, activities, etc. That too can be a positive thing. Personally, my cycling was traded-in for walking. There are handy tools, cooking utensils, even video gaming systems that are better suited for RA and JRA patients. All fun, helpful and positive. All can be used (and will be) by other family members. No, you don’t have to give up everything. But, often times, you do have to change how you do them, i.e. 9 holes of golf on a Par 3 instead of 18 on a Par 5. Once upon a time, I used to shop in a mall like I was the Energizer Bunny … going … and going … and going. Now, I limit my excursions to 2 hours. It helps me to manage the fatigue that will follow. If you have RA or JRA, it will help you too. Learn to use the internet, wisely — find locations that sell the products you are looking for, before you leave home. Enjoy activities, even though you must limit them. If you push your body, the RA will push back even harder. It isn’t worth a setback.

Unfortunately, Depression can be a problem for some patients. When the frustration of a flare, pain, limitations, etc. complicate life … it can be difficult to have patience and remain optimistic. Yet, that’s exactly what it takes. Much about living with Rheumatoid Arthritis is a mental game. RA or JRA has entered your life. But you can control your lifestyle. You can control the disease through medications, changes to your diet, activities, etc. It doesn’t have to control you. When you embrace optimism, you become a better player … smarter … happier … and definitely moving on with your life!


Reference Links:

* Photo by Bogdan Dada on Unsplash


Choose Joy …

It’s funny how little things can emotionally move you. When I was very young, my mother took me on a trip to the local garden center. She said that a Dutch girl (such as myself) needed to start appreciating Dutch flowers. We picked out various bulbs — Tulip, Crocus and Hyacinth. Then, we went home to plant them. It was my first real hands-on experience, with gardening — filled with ancestry, excitement, dirt, anticipation, and beautiful results. In the decades long since, I’ve always had and admired Dutch flowers. Whenever I see them in bloom, no matter where it is, I have to pause to just look at them. And I always smile. It gives me joy.

Recently, I was doing some updates around the house. I wasn’t really looking for a wall plaque, but it found me. It was simple, in design — a bit rustic — painted with wildflowers and butterflies. Yet, its message leaped out at me: “Let it go … Choose joy”. Like those Dutch flowers, it made me smile. It literally uplifted me, if only for a few moments. Need I say, I bought the plaque? And I hung it where it can be seen, first thing, every day. I did this as a reminder to myself to choose joy — to live as happily as I can. And to let go of the negative.


Faith teaches us that joy is an emotion and a “fruit of the Spirit” (Galatians 5:22-23). That it is a matter of habit and virtue. And that it can be commanded. I’ve never professed to being a Divinity major. My walk in faith is purely based on my experiences in life. But in my humble opinion, God didn’t place us on Earth to be miserable. Scripture teaches us that “A joyful heart is good medicine …” (Proverbs 17:22). Remarkably, there are actually scientific studies to support this.

When we are happy, or joyful, our hearts are healthier. Our stress is lessened. Aches and pains diminish. Our immune systems grow stronger. And our lives are lengthened. Think about that, for a moment.

Psychology teaches us that happiness and joy aren’t exactly the same. Happiness is a vague emotion. It means different things to different people. And that it’s temporary, in duration. Yet, all agree that it is positive. Joy is also positive — possibly more powerful. But Joy, they contend, is like a belief. It is with us, for the long haul. Even when life becomes difficult, joy can find a way to comfort and uplift us.

There are ways to feel more joy and happiness, in your daily life:

  •  Choose to smile. You can make a conscious decision, each day, to have a good day.
  • Try Prayer or Meditation. It soothes the mind and soul. Relieves stress. Comforts.
  • Practice Positive Thinking. Acknowledge the simple things that bring you joy.
  • Be Grateful. Often times, joy/happiness is increased by recognizing the people & things that we already have.
  • Be More Active. Random acts of kindness don’t require Olympic training. Yet, they are fulfilling and inspiring. Try volunteering for a cause you believe in. You will feel joy, as a result of your involvement.

Society often times bombards us with negative things. But each of us has the power to choose. We don’t have to accept every negative that surrounds us. We can learn to let go and choose joy!


Reference links:

* Photo by Aaron Burden on Unsplash.

Breathing In The Garden …

Plants and flowers breathe. Trees do, too. Did you know that? Their tissues respire just as animal tissues do. But it isn’t plant-life that I want to focus on. Our lives are gardens; remember? And breathing is essential to our quality of living. An absolute must, for survival. Unfortunately, breathing can be difficult for anyone who has lung disease.

julia-engel-464905 (1)

Chronic Obstructive Pulmonary Disease, or COPD, is a chronic inflammatory disease of the lung. It obstructs airflow when you exhale. And it is highly prevalent throughout the world. Approximately, 600M people live with COPD. By 2028, the number is expected to increase — making it the third leading cause of mortality worldwide.

In the U.S., about 20-30% of all COPD patients are (or were) smokers. Cigarette use constitutes the largest risk factor for the disease. Cigars are also harmful. Yet, many who are diagnosed have never smoked at any point in their life. Air pollution, biomass smoke exposure, genetic abnormalities, age, occupational dusts / chemicals, poor nutrition and respiratory infections (especially in childhood) are additional factors.

If you have been diagnosed with COPD, then you know the symptoms all too well. For those who may be concerned about themselves or a loved one, consider some of the following:

  • Shortness of breath (especially during physical exertion)
  • Wheezing
  • Chest tightness
  • Constantly clearing your throat of mucus
  • A persistent cough
  • Blueness of the lips or fingernails
  • Lack of energy
  • Swelling of the ankles, legs & feet

The quickest and easiest method to diagnose COPD is with Spirometry. Other tests may also be used, i.e. chest x-ray, Bronchodilator Reversibility, Alpha-1 Antitrypsin Deficiency, Computed Tomography, etc.

If you have been diagnosed with COPD, there are ways to improve your health and life. Quit smoking. And, please, do not fool yourself into thinking that E-cigarettes are a safe alternative. When you use them, you are inhaling the ingredients, i.e. flavorings. There are no medical studies to confirm that this is safe, or what effects it could have on your body in years to come. Eating healthy will not cure COPD, but it will make you feel better. Food is fuel for the body. Good fuel produces good energy. When you have COPD, you actually need more energy to breathe. That equates to the need for a healthy, balanced diet. If you are overweight, consider dropping some of those extra pounds. Drink plenty of fluids (42-48 oz. of non-caffeinated beverages), daily. It will make the mucus that you struggle with thinner and easier to cough up. Limit your caffeine consumption. Watch the salt. Too much sodium will cause your body to retain fluid. That makes breathing difficult. Calcium and Vitamin D can be found in dairy products, i.e. milk, cheese, yogurt, etc. If you aren’t getting enough in your diet, your doctor may suggest supplements. Remember to eat grains, low-fat meats, vegetables and fruits. You’ll be glad that you did!

Another way to enhance your quality of life, despite COPD, is with exercise. Weak muscles need oxygen. When they aren’t getting enough, even simple tasks (like a trip to the supermarket) become difficult. Exercise can change that. Walking is a simple and safe way for most patients to start. A stationary bike is another option. Arm curls, done with light weights, can also help. Leg extensions can strengthen your thighs. In fact, many COPD patients enjoy Tai Chi. It provides a mild workout and also helps to ease stress/anxiety. Talk to your doctor about  the exercise options that can best help you.

With any Chronic illness, optimism plays a key-role in maintaining a productive lifestyle. And optimism comes, in part, from being informed. So, talk to your doctor. Read articles about COPD. It will enable you to have more control over your life and your disease, instead of allowing it to take control of you. It’s also important to remember that you aren’t alone. 133M Americans live with a Chronic illness. Many have COPD. You might even consider meeting some of them. The Better Breathers Club is a great way to do so. It is a support group for individuals who are living with lung diseases like yours. And these groups are all over the country. If you are interested in finding a Better Breathers Club near you, call 1-800-LUNG-USA or visit the American Lung Association’s website for more details. You CAN do this! 


Reference Links:

Photo by Julia Engel on Unsplash

The Heart Of The Matter …


No organ within the human body represents life more than the heart and rightly so. But the heart can have its share of problems. Some worse than others. Chronic Heart Failure, also known as Cardiac Failure or CHF, is an illness that has no cure. CHF happens when the heart is damaged and cannot function (pump) properly. Once it is damaged, it cannot heal. And, with time, CHF will progress or worsen. As our population ages, more cases of CHF will be diagnosed. Approximately two-thirds of all patients over the age of 70 have heart failure. And 20% of all patients, over the age of 40, will experience CHF at some point in their lifetime.

The risk factors for Chronic Heart Failure vary, but include: multiple Cardiovascular conditions, advanced age, Hypertension, Diabetes, Dyslipidemia, Alcohol consumption, Obesity, etc.

Common symptoms for CHF include:

  • Breathlessness
  • Swollen legs, ankles, or stomach
  • Weight gain
  • Loss of appetite
  • Coughing
  • Dizziness

If you or a loved one are struggling with these symptoms, please contact your doctor.  Diagnosis for CHF is achieved through various tests, i.e. chest x-ray, echocardiogram, electrocardiogram (ECG) and/or coronary angiogram. Once your diagnosis has been made, it is important to monitor your symptoms regularly. If they worsen or additional symptoms appear, you should contact your doctor immediately.

Treatment options depend upon the Stage (A,B,C, orD) of a patient’s CHF as well as their medical history. There are medications that can help manage the condition. Lifestyle changes are also important. Devices like a pacemaker, or implanted cardiac defibrillator (ICD), may be advised. But in more serious cases, a heart transplant may be needed.

By now, if you or a loved one has been diagnosed with Chronic Heart Failure, you may be wondering about life expectancy. No doubt you are feeling pretty overwhelmed. Life expectancy varies, depending upon the patient’s condition. According to a study published in Circulation Research, in 2013, doctors estimated that 50% of CHF patients survived 5 years. And approximately 10% lived a decade. A lot depends upon you and your response to CHF, both physically and mentally.

The best way to live with Chronic Heart Failure is to do so with confidence. Embrace optimism. Yes, you are sick. It is very serious. But you are not alone. There are millions of people living with Chronic illnesses. Many of them have CHF. Educate yourself on your condition. Talk openly with your doctor and your family. Ask questions. Make lifestyle changes, if you can. There are ways to minimize your symptoms. Discuss your options. Your confidence will actually improve your daily living. It will allow you to manage the stress of having a Chronic illness. It will help you to cope with your new normal. Yes, it’s scary. Anyone who has CHF, or any chronic illness, understands your fears. Those who have experienced setbacks know your frustration. But every day is a gift worth having — worth living. You can do it!


“I can do all things through Christ who strengthens me.”

 — Philippians 4:13 (KJV)


Reference Links:

* Photo by Kelly Sikkema on Unsplash

World Cancer Day: Who Will You Remember?


For most Americans, this Sunday is Super Bowl Sunday. There will be parties … family and friends … a feast of foods … cold drinks … and then the much-anticipated big game. Many might even make a little wager, on its outcome. But for other Americans, as well as the rest of the world, February 4th is World Cancer Day. A time set aside to prevent millions of Cancer deaths through education and awareness.

Cancer is a group of related diseases. As it develops, within the human body, the orderly process of cell growth becomes chaotic. Abnormal. This usually results in extra cells forming tumors. Although, not all Cancers produce such growths, i.e. Leukemia. Cancer cells invade the immune system and can actually prevent it from doing its job. Tumors can even use the body’s immune system to grow. As the disease spreads, it is medically termed as Metastatic Cancer. And the possibility of a patient achieving a five-year survival rate is significantly reduced.

Most people know that Cancer is a Genetic Disease. The genetic changes that cause Cancer can be inherited from our parents. In some families, its existence can be traced from one generation to the next and so on — like hair and eye color. If you ask, most individuals can name someone who has been diagnosed with the disease. Cancer is that prevalent, within our society. But what they may not know is how lethal Cancer actually is … even with modern medicine. Cancer is the second leading cause of death, globally. It is also the second leading cause of death, in the U.S. And cases are expected to rise 70%, in the next 20 years. Will you, or someone you love, be one?

There are ways to help prevent Cancer, i.e. tests, diet and lifestyle changes, risk-reducing surgery, etc. Talk to your doctor about your options. Because they do exist. More importantly, follow through with them. Millions are diagnosed with Cancer, every year. Many will succumb to the disease. Young and old. Male and female. Rich. Middle-class. And Poor. Cancer doesn’t discriminate. And it certainly doesn’t show mercy. It is easier to be proactive than to be a statistic.

This Sunday, before you are swept up in the festivities that surround the Super Bowl, take a moment. Reflect upon the greater battle — Cancer. How many people do you know who have faced the diagnosis? How many lost their fight? February 4th is World Cancer Day. Who will you remember?


Reference Links:


Is Your Stinger Out?


Years ago, when our son was barely two years old, he was stung by a bee while playing in a wading pool. It hurt horribly. And through his tears, he asked, “Why did it sting me, Mommy?” Try explaining the aggressive actions of a bee to a toddler. I had no plausible explanation that a child his age could understand. So, I focused my son’s attention on the stinger and making sure that it was out.

Over the years, in our family, that little episode became a teaching experience for how to avoid hurting someone. If you came through the door with an attitude, someone would tell you to “Pull your stinger in”. It didn’t matter how old you were, or who you were. This became the warning-shot across the bow of emotions that we all used. We all knew what it meant. In some way, someone was close to hurting someone else. Perhaps, they were angry? Tired. Frustrated. Maybe, they were just feeling too big for their britches? But causing more pain wasn’t the answer.

These days, as I strive to juggle multiple Chronic Illnesses and lead a productive life, I seem to be hearing that warning more than anyone else. There are times when the pain is just all-consuming and it takes every ounce of strength to deal with it. Days when the symptoms are far worse, than in weeks or months past.

If you have a Chronic Illness, then you know what I mean. The setbacks are so frustrating that you resort to tears and foul language. Medications must be added, or changed. Or, perhaps, you manage to pick-up whatever virus is going around? You feel like hell, to be blunt. The world around you is marching on, but you seem to be getting further behind. Whatever the reason, you are a grumpy soul. A short fuse. And your stinger is out … just waiting to zap someone. I make no excuses for my shortcomings. This is part of life with a Chronic illness.

Once that stinger has inflicted pain, you don’t feel any better. I know that I don’t. In fact, you probably find yourself feeling worse. Guilt-ridden. Maybe, even depressed? Living with a Chronic Illness is a lesson in many things, including patience and forgiveness. The sooner that you embrace this idea, the better you will feel emotionally. And you may find that it helps you to avoid a few negative situations, in the future.

Your life was hectic, before your diagnosis.  So was mine. That isn’t going to change. There will always be something to irritate you … upset you … frustrate you. Chronic illnesses magnify these problems. If you get stressed out, you usually worsen your condition. And keep in mind, your Chronic Illness affects those around you too. It stresses them — scares them. We all have our limits.

When the pain, setbacks and frustration of Chronic Illness overwhelm you … take a breath. Our bodies are not what they once were, like it or not. And none of us were given a vote, on the matter. Still, you can learn to be patient with yourself and others. Think about it. With patience, you will be able to achieve your goals. You’ll have healthier relationships. And that equates to a better, happier life.

Will patience solve all of your problems? No. But it will provide a healthier approach to dealing with them. Think of it as a “coping skill”. Because that’s exactly what it is. So, pull your stinger in and slow down. It isn’t worth inflicting hurt upon your loved ones. It isn’t necessary. They don’t deserve the grief. And you really don’t need the added stress. Yet, it will happen from time to time. The illness will get the best of you.

When it does, seek the forgiveness that heals. Go to whoever you have hurt, i.e. your spouse, children, neighbor, etc., and apologize. Make amends. It is what they need to hear. It is the burden of guilt that you need to shed. Humility is a healthy thing. Don’t be afraid to exercise a little of it. Always deal with the hurt that you’ve caused, in an expeditious way. Don’t allow it to fester. That will only cause more pain … involve more loved ones, etc. Your family and friends are your support system. And you are part of theirs. Lean on each other. Talk. Forgive. Love. Savor every day that you have together. Life is too precious for anything less.


“Bear with each other and forgive one another if any of you has a grievance against someone. Forgive as the Lord forgave you.”     — Colossians 3:13 (NIV)



Reference Links:



Winter Is Harsh On The Garden …

Every gardener knows that Winter is harsh on the garden. When the worst of the season sets in, with thick clouds … howling winds … snow … ice … and frigid temperatures … the garden is a dreary place to be. Barren. Even lonely. Our lives are gardens, too; remember? And Winter takes its toll on them, especially if you live with Chronic Pain.

Most pain, thankfully, is temporary. In a few days, or a couple of weeks, the body is back to its old self and the injury is soon forgotten. Chronic Pain isn’t so easy. It is pain that persists for 3-6 months or longer. And it is usually the result of an underlying medical condition, or injury. Many Chronic Illnesses are associated with Chronic Pain, i.e. Cancer, Fibromyalgia, Rheumatoid Arthritis, Lupus, Back Pain, Parkinson’s, etc. If you have one, then you know all too well the effects that it has on the body. You live with it, daily. And you suffer. Often times, in silence.

Chronic Pain interferes with living. It changes even the little things. But it wrecks havoc with the more important ones. Chronic Pain prevents patients from getting much needed rest — even precious REM sleep. It changes mood and mobility. It raises stress levels, within the body. The added stress can and usually does create even more pain. I’ve been there. I know. It’s a vicious cycle. The effects of Chronic Pain can lead to Depression. Why? There is a link between our emotions and pain. If your body is in pain, you feel bad. As the pain increases, you feel worse. And when the pain is prolonged, as with Chronic Pain, you begin to feel very overwhelmed … desperate … alone.

Studies have shown that people with Chronic Widespread Pain, or CWP, are more at risk than individuals who do not struggle with pain. CWP patients are 1.7 times more likely to die from Cancer. They are 3.2 times more likely to die from Cardiovascular disease and 5.7 times more likely to die from Respiratory disease. Even when lifestyle factors were taken into consideration, i.e. smoking, those with CWP were at a 50% greater risk than individuals who do not live with long-term pain.

If you suffer with Chronic Pain, management is key to achieving some level of normalcy. How you manage your pain is between you and your doctor. What works for me, or you, may not help someone else. Pain medications, especially Opioids, should be carefully prescribed and monitored. The misuse of such medications has created a crisis all its own, in America. NSAIDs, whether by prescription or over-the-counter, are another option and should also be taken as-directed. Some patients may find relief, given the source of their pain, with a minimally invasive surgical procedure. The rest of us must stay vigilant and creative. We are in this battle, for the long-haul. If you are interested in alternative options, you might consider: Acupuncture, Massage Therapy, Aromatherapy, or Cannabidiol-infused rubs (CBD).

I have been living with Chronic Pain, for almost 18 years. I don’t profess to be an expert, but experience is a good teacher. If there are two items that I cannot imagine living without, it’s my trusty heating-pad and a well-made recliner. I actually tried living without the latter, for a time. I did pretty good, until a flare threw my body into levels of pain that I hadn’t experienced in nearly 3 years. I immediately purchased a new one. As simple as it may sound, a recliner (when reclined) provides relief to the body much like a hospital-bed. Think about it. When your pain goes from bad to worse, owning one becomes a necessity. In some cases, it provides the only sleep you can get.

Last but not least, I have personally found that treating your “level of pain” is as important as treating the pain itself. Chronic Pain isn’t always a 5-alarm fire, but it is always present. So, focus on the level of pain — not eliminating it. The term “Chronic” means that it’s not going anywhere. Accept this fact. Don’t let it drag you down, or defeat you. Rest assured, it will try. There will be good days and bad. But the best way to live with Chronic Pain is to learn how to fight back. It empowers you — emotionally and physically. Yes, it is draining. That’s the nature of living with the beast. There’s nothing easy about it. Still, you become wiser from the battle — better equipped to handle the next setback (when it comes). You learn to make fewer mistakes. You explore helpful discoveries. Your outlook, despite your condition, becomes more confident. That’s healthy. It’s encouraging. And optimism, like the warmth of Spring, brings new life!


Reference Links: