On Eagle’s Wings …

Most of us grew-up with the notion that when you were sick, you went to the doctor and you got well. Life returned to normal. But once you are diagnosed with a Chronic illness, that simple concept goes out the window. In your new normal, you regularly go to the doctor/s … you regularly take medications, sometimes therapy, surgery, exercise, dietary changes, etc., but you are never where you once were. The symptoms remain. Pain is often times as common as breathing. And being well translates to effectively managing your disease. Despite your best efforts, there are setbacks. Those with a Chronic illness will tell you that it’s inevitable. And with time, the struggle can take its toll. Some become anxious and/or depressed. Others just want to give up. Medical science has accomplished a lot, but courage and strength can’t be prescribed. These essential tools must come from within.

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“… but those who hope in the Lord will renew their strength. They will soar on wings like eagles. They will run and not grow weary, they will walk and not be faint.”  — Isaiah 40:31

Often times, a patient wonders, “Why me?” They may look at their life and try to find where the mistake was made. While lifestyle can contribute to some Chronic illnesses, there are many patients who have a long history of maintaining a healthy one prior to their diagnosis. Genetics and environment also play a role. In essence, there are no guarantees in life.

My uncle was diagnosed with Hypertension, around the age of 30. He successfully managed his condition, for years. In his late-50s, he retired … sold his home in the suburbs of Chicago … purchased a farm near Nashville, TN … and left the Big City grind for an easier gentry. He had chickens, ducks, horses, a well-stocked fishing pond, etc. When he and my aunt chose country-living, they went all in. Gardening. Quilting. Relaxing on the porch. It was a peaceful existence, surrounded by natural beauty. Admired. Perhaps, envied. Yet, a year later, he was stricken with a massive stroke. Left with partial paralysis, he found himself in a wheelchair. And, as he confessed to me nearly a decade later, he wondered, “Why me?” The really wondrous thing was that, according to him, he heard a voice say, “Why not you?” Was this a Divine conversation? Maybe. But, in that moment, he realized that he wasn’t alone. He had his faith to sustain him — to help confront his situation. There were millions struggling with medical conditions, the loss of body function, etc. His new normal wasn’t a rarity. It was a curve-ball in life. And he chose to make the most of it, which is exactly what God wants us to do.

Consider, for a moment, the Book of Job. It details the long-suffering of a good man. In my humble opinion, the diagnosis of any Chronic illness isn’t a matter of punishment. It’s a part of life that eventually finds most of us. It’s a time of change, like the seasons. But it is also an opportunity to inspire, to grow, even to thrive. My faith has taught me many things. One is that the Lord will not give me more than I can handle. So, even when a setback comes, I am comforted in that knowledge. Prayer has been a vital part of my daily living, for decades. Through it, I have been uplifted — strengthened emotionally, physically and spiritually. Inspired. And, yes, guided. I have been given the courage to confront my fears, work through my frustrations and move forward. Through the worst of times, prayer has led me — allowed me to soar. And I thank God for that.

Many religions rely on the power of prayer. They believe in the use of prayer for comfort, healing, strength and peace-of-mind. They know that it works, though the how and why may remain a mystery. Buddhists use meditation. Roman Catholics use the rosary. Protestants have individual prayer and Prayer Groups. Muslims use Du’a (personal prayer for healing). Jews turn to dovening and the Mi Sheberakh (a healing prayer for the sick). All are united by the belief that comfort and healing can be attained through sincere prayer.

In recent years, there has been an increase in the number of medical studies involving prayer. Even the NIH (National Institutes of Health) has funded one. Thirty years ago, the idea would have been unheard of by the scientific community. But time, as well as data, has a way of changing things. Even those who are not devout, can understand positive results. Prayer, in its various forms, has the ability to relax the patient. Stress is lessened, or eliminated. This in turn promotes healing. The limbic system of the brain, responsible for basic emotion, instinct and mood, is also positively effected. This aids the patient’s mental health. Who exactly gets the credit for the healing remains a matter of debate. Still, the facts remain. Prayer can play a significant role in a patient’s health and well-being.   

When you are diagnosed with Chronic illness, you are in it for the long-haul. If you are a religious person, you will probably turn to your faith for strength and courage. You may even find yourself struggling with it. That too, I think, is natural — human. So, set your hesitation aside and talk to your clergy about it. You won’t be the first, or the last. Others, overwhelmed and searching, may find faith at this time. You too are neither the first, or the last. It might also be the perfect time to join a a Bible Study group, volunteer at a Food Bank, etc. Sometimes, when you see the difficulties of others, it lends perspective. And many religious organizations even have support groups, for those who are living with Chronic illness. This is especially helpful for patients who live alone, or lack a solid support system at home.

Despite your affliction, or your views toward prayer, always embrace optimism. On the difficult days, I know that’s a lot to ask. But remember … an optimistic mindset is a key component for managing your condition. It’s uplifting. Encouraging. Motivating. Optimism is a confidence — a sheer hopefulness — that allows you to fight another day. One that somehow strengthens your body as well as your resolve. If you are anything, as a patient who is living with a Chronic illness, you are a warrior. We all are. Keep fighting the good fight!

 

Reference Links:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1070773/

https://www.webmd.com/balance/features/can-prayer-heal#1

https://www.cancer.org/latest-news/study-cancer-patients-with-strong-religious-or-spiritual-beliefs-report-better-health.html

https://www.washingtontimes.com/news/2015/dec/30/power-of-prayer-healing-and-therapeutic-prayer-in-/

*Photo by Keo Mowat on Unsplash

 

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School Daze: Students & Chronic Illness

Recently, a friend shared photos of her high school reunion online. It was fun to look at those images, because I had attended this school for a few years. Once upon a time, these individuals were also my classmates. Time has a way of changing us. Age becomes the great equalizer, in life. And many of the things that we worried about, back in school, seem remarkably trivial. Perhaps, wisdom has finally taken control? Or, maybe, we’re just lacking the energy of our youth? Nowadays, most of us have Chronic illnesses to manage and discuss. It’s the new normal. But, 40+ years ago, it was a very different story. My diagnosis was an oddity that added difficulty to school and relationships. If your student is living with one, they know exactly what I mean.

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I was diagnosed with a Chronic illness, in 8th grade. In the blink of an eye, my life was drastically altered. I was hospitalized for six weeks, in one semester. My grades tumbled, across the board. No subject was spared. Perfectionist that I was (and still am to some extent), I went into full-panic mode. I was the student who tutored others. I had even tutored a couple of students who were a year ahead of me. Excellent grades had always been achieved, with modest effort. I had never been the student who had to work hard, or academically struggled. My Science teacher, crusty old gal that she was, refused to believe that I was even sick. Letters from my physicians had absolutely no influence on her. It made for an awkward classroom experience, to say the least. My other teachers, praise God, were understanding. They even brought school-work to my hospital-bed. But my life, like a line of falling dominoes, continued to collapse. My friendships became strained. Some disintegrated. Others totally disappeared. Then came the grand finale … the Headmaster announced that I had missed a few days over the limit that the state allowed (in a school-year). And I was held back, despite my passing grades and valiant effort. To say that it was heartbreaking would be an understatement. It was the most brutal thing that I had ever endured. Frustrating. Embarrassing. Even now, at 58, I really cannot describe how broken that year left me. Thankfully, I had a great support system — my family. With them, I was able to glean a valuable life-lesson from this unbearable time … perseverance!

Education has improved, in many areas. In others, it remains a mess. I have no desire to debate over-crowded classrooms, curriculum, weapons, etc., though all are worthy subjects. My focus, here, is on each and every student who lives with a Chronic illness.

We cannot control how society will react to the chronically ill, even if the patient is a child. We cannot force relationships to happen, or survive. And there are no guarantees that the adults involved won’t somehow disappoint us. We must realize that human nature plays a role. And perceptions can be skewed, by many things. Despite the law, diligent studying and the best of parenting, the odds are still that your student’s health issue will one day be an academic and/or social issue. So, be prepared.

Once a child is of school-age, he or she begins a journey through the academic and social pressures of growing-up. Parents are the navigators, for this journey — helping their child to avoid the hazards without becoming too overprotective or overbearing. When a child has a Chronic illness, there is an added degree of difficulty. Their needs/illness effects several, i.e. parents, siblings, teachers, etc. Sometimes, it is met with cooperation. And at other times, it’s a struggle. On the tough days, remember that you aren’t alone. Your child didn’t ask for a long-term medical condition. Nor did you ever want it, for them. Yet, here you are. And there are millions of families who can relate to what you are going through. They are going through it, too. 

Students with Chronic illness often feel left out, embarrassed, frustrated. They want to fit in and be normal. Yet, their health is anything but that. Less than 20% of all students live with a Chronic illness. So, prepare them. Friends, classmates or teammates may ask questions. It’s no big deal. Usually, a brief response will suffice. And, if an emergency should ever arise, it can be life-saving to have individuals who are in the know.

Some students may have academic difficulties, when fatigue and other symptoms plague their ability to study or attend class. Others do not. Some may resort to trying risky behaviors, i.e. skipping medication, underage drinking, binge drinking, smoking, drug abuse, unprotected sex, reckless driving, etc. But many learn to respect their medical condition and its needs, early on. They have no desire to take unnecessary risks. Unfortunately, when someone is different, they can be the target of physical and/or verbal bullying. This includes students who are living with a Chronic illness. If your child is experiencing peer victimization, it hurts. So, it is important to address the issue promptly. Stress has the nasty ability to worsen any chronic condition.

If you can foster a team atmosphere at home and at school, it will help tremendously. A good support system, no matter the patient’s age, is priceless. Think of this as a lesson that your student can utilize, throughout their life. It’s an inclusive approach that makes them feel less overwhelmed. Talk candidly with your child about ways that they can manage their disease and enjoy life to the fullest. Build their confidence. Talk about their goals and dreams, i.e. team sports, class trips, college. Discuss ways to attain these things. Many accomplished individuals, from U.S. presidents to celebrities and pro athletes, live with Chronic illness. It helps any student to have a role model that they can identify with. Last but not least, try to avoid mourning what you think (or know) your child cannot do. Although it may be a natural reaction for parents, it can leave your child feeling as though they have disappointed you. Instead, celebrate and encourage what they CAN do. We all have gifts. The key is discovering and utilizing them! 

 

Reference Links:

http://www.disabilityrights.org/appendix.htm

http://www.med.umich.edu/yourchild/topics/chronic.htm

http://www.apa.org/helpcenter/chronic-illness-child.aspx

http://www.bourgase.com/teaching/special-education/coaching-chronic-illness/

https://academic.oup.com/jpepsy/article/42/3/245/2418166

http://spectrum.diabetesjournals.org/content/30/1/3

https://www.webmd.com/balance/managing-chronic-disease-at-college#1

https://consumer.healthday.com/general-health-information-16/suicide-health-news-646/chronic-illness-can-plunge-young-adults-into-despair-725726.html

*Photo by Aaron Burden on Unsplash

 

 

A Splash Of Relief

Many of us have been in pain, at one time or another. Some have experienced severe pain. But if you are one of the millions who live with a Chronic illness, you may also be living with chronic pain. Harsh. Relentless. Overwhelming. It’s unlike any pain that you have ever experienced — consuming you. And managing it is a struggle all its own. If this is you, relief may be easier than you ever imagined. Are you ready to take the plunge?

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In the summertime, most of us think of a swimming pool as a great place to escape the heat. Relax. Unwind. All of which are true. But a swimming pool can also provide the perfect environment for Aquatic Therapy, or Water Therapy as it is also known. 

When your body is immersed in water, it allows you to relieve physical stresses. Even something as simple as flotation has its benefits. Pressure is taken away from your muscles and joints. Other water options include: lap swimming, water aerobics, water yoga, and aquajogging. Aside from offering wonderful, low-impact exercise, the pool also gives you the opportunity to reduce your pain, lower your blood-pressure and enjoy yourself. You might even lose some weight. But, there’s more. Aquatic Therapy can increase your mobility — alleviating that pesky stiffness. It can also reduce fatigue. And all are positives for the management of any Chronic illness, especially one with chronic pain. Results vary, but studies have shown that utilizing a pool does work. And that makes this therapy something to strongly consider. You can have a better quality of life. So, go for it!

As with any exercise program, you should first talk to your doctor. He or she may even make recommendations that will help you find the best option, for your specific health needs. Most Aquatic Therapy is done in an indoor pool, with warm water. But outdoor facilities can also be used. If you are interested in exploring Aquatic Therapy, you can find a program at your local YMCA, a Health Club, Athletic Club, or Spa.  

Life is meant to be enjoyed. That’s possible, even with a Chronic illness. It starts with good pain management … and a splash!

 

Reference Links:

https://www.cdc.gov/healthywater/swimming/swimmers/health_benefits_water_exercise.html

https://www.healthcentral.com/article/study-finds-swimming-reduces-pain-associated-with-fibromyalgia

https://www.arthritis.org/living-with-arthritis/exercise/arthritis-friendly/lap-swimming.php

https://www.mayoclinic.org/diseases-conditions/arthritis/in-depth/arthritis/art-20047971

https://www.webmd.com/fitness-exercise/a-z/water-aerobics

https://www.painscience.com/articles/aquatic-therapy.php

* Photo by Haley Phelps on Unsplash

 

One of The Best Summer Indulgences …

Every season brings activities that seem exclusive to that time of year. Summer is no exception. Many foods are also quintessential to the season. In the summertime, you need to look no farther than a roadside stand or your local Farmer’s Market. The choices seem endless. Many farms also welcome guests. If you have one near you, put the family in the car and enjoy a visit. Walk in the orchards. Pick your own. Or pick one of the baskets that will surely be waiting. The fruits and vegetables of summer are beautiful, fragrant and delicious. It’s a delight to the senses, from farm to table. But the very best part of these summer indulgences is that they are good for us, too!

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There is no plausible way to cover them all, short of writing a novella. But let me share a few examples. The links below can provide additional information. Let’s start with peaches. And, yes, I am partial to SC peaches. In a study from Texas A & M, results showed that peaches (no matter where they’re grown) can fight Chronic illnesses like Diabetes and Heart Disease. These fuzzy beauties can also reduce bad cholesterol (LDL). Peaches provide an excellent source of the antioxidant Vitamin C. And that is beneficial in combating the formation of free radicals known to cause Cancer. Vitamin C can also reduce wrinkles. Are you listening, girls?

Watermelon isn’t just for kids. It is a nutrient-rich food that any age can benefit from eating. And everyone seems to enjoy it, too. Around 92% of watermelon is water. This provides needed electrolytes in the summer’s sweltering heat. Another heads-up for the athletes, out there … Amino acids, like L-citrulline, found in watermelon can reduce muscle soreness. Vitamins A and C are great for healthy skin and hair. Remember that C is a wonderful antioxidant. And the fiber in watermelon aids in healthy digestion.

Okra isn’t just a “Southern thing”. It boasts many healthy benefits like fiber, folate, calcium, potassium, magnesium, Vitamin K, Vitamin B6, protein, thiamin, etc. These things promote good heart health and strong bones. You’ll find antioxidants in okra, too.

Yellow veggies like corn, summer squash, peppers, beans, golden beets, etc., offer many nutritional benefits. The “Yellows” provide us with plenty of antioxidants, vitamins (A, B, C, E & K), etc. Antioxidants fight inflammation, among other things. They boost your immune system. Manganese strengthens bones. These veggies are also heart healthy. Some can clear toxins from the kidneys. Others aid in lowering bad cholesterol and blood-pressure. They can even help with fatigue!

Cherries are another great indulgence, of summer. They offer a load of antioxidants and anti-inflammatory properties. Just 1 cup of  these little gems (approx. 21 cherries) is less than 100 calories and can provide 15% of your daily Vitamin C. That’s healthy snacking! Cherries can slow the aging process, help to combat many Chronic illnesses, lessen joint pain, lower bad cholesterol, etc. Cherries and cherry juice have been shown to lower the risk of Gout attacks. Tart cherries are one of the few foods that provide Melatonin. This is a hormone that aids the sleep-cycle. And we can all appreciate a good night’s rest!

If you are looking for a fun activity, or a way to introduce new foods to your family, plant a garden or visit a Farmer’s Market. I have very fond memories of summers that are long past … their delicious bounty … and the adventures that transpired. Every year, amid the long days and warm weather, they come come back to me and always put a smile on my face …

I remember the Rainier Cherry tree, in my uncle’s backyard. My cousins and I would pick those cherries every morning, right after breakfast … still wearing our pajamas … our bare feet running through the dew-laden grass. I remember my grandma’s garden — lush with goodness and envied by many. And I remember the gardens that we planted, too — though ours were never as outstanding as hers.

What we didn’t grow, we found at the local Farmer’s Market. I always enjoyed taking those shopping trips with my Mom … smelling the fresh fruit, making selections, trying new recipes. Even now, I can remember my mother and grandmother teaching me the fine arts of canning … freezing … even drying. We were an industrious bunch — breaking beans, shucking corn, peeling peaches and laughing. No matter the task at hand, there was always a lot of love and laughter … fruits, vegetables, chutney, chow-chow, jams, jellies. Our freezers and pantries were proudly stocked. Those are some of the lessons that you never forget. And making them were some of the best Summer indulgences.

 

Reference Links:

https://www.hsph.harvard.edu/nutritionsource/what-should-you-eat/vegetables-and-fruits/

https://www.medicalnewstoday.com/articles/274620.php

https://www.medicalnewstoday.com/articles/266886.php

https://www.medicalnewstoday.com/articles/311977.php

https://www.healthline.com/health/food-nutrition/yellow-vegetables#golden-beets

https://www.health.com/nutrition/health-benefits-cherries

http://www.eatingwell.com/recipes/19809/seasonal/summer/vegetables/

Photo by Ian Baldwin on Unsplash

 

When Pests Attack Your Garden …

Every gardener, whether they are a seasoned pro or an insecure novice, has gone head-to-head with some type of pest, i.e. mosquitoes, ants, beetles, etc. With luck, vigilance and supplies from the local garden center, the gardener is usually victorious. But our lives are gardens too: remember? When a pest like the Deer Tick attacks your garden, the result can be Chronic Lyme Disease (CLD).

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Lyme Disease is a caused by a bacterium (Borrelia burgdorferi). Patients are infected from a tick bite. Because the immature ticks, or nyphms, are extremely small many people don’t even realize that they’ve been bitten. So the tick can literally attach itself and feed for days, unnoticed. And the longer it is attached, the more likely it is to pass Lyme and/or another pathogen into the body.

With summer activities and trips on the increase, it’s important to take notice and precautions. Lyme Disease has been found on all but one continent. It has been found throughout the U.S., but it has substantially higher numbers in the Upper East Coast, the Midwest and along the West Coast. Not all ticks carry Lyme. The Deer Tick, also known as the Black-legged Tick, is the culprit. These ticks can also transmit the disease to pets. Researchers have found the bacterium in other blood-sucking insects, i.e. mosquitoes. But there is no evidence that they are capable of spreading Lyme Disease.

Ticks enjoy wooded areas … grassy fields … brush … even your backyard. They live on animals as well. To help prevent a tick bite, treat your clothing and gear for camping or hiking trips. Use EPA-approved insect repellents that contain DEET. However it is important to avoid using repellents on babies, under 2 months of age. Examine your clothing, gear and pets. Shower after being outdoors. Carefully, check your body. All of these things will greatly reduce your risk of a tick adhering to your skin.

If you are bitten, do not panic. Remove the tick with tweezers, as soon as possible. You will see a small, red bump. This isn’t unusual. The symptoms of Lyme Disease will appear, from 3-30 days after a person has been bitten. So, stay alert. If a rash appears, often in a bull’s eye pattern, you have probably been bitten by an infected tick. The rash may not even be painful, but it shouldn’t be taken lightly. Flu-like symptoms are also common, i.e. chills, fever, fatigue, headache, etc. If you experience any of these, you should contact your doctor. Untreated, the symptoms of Lyme Disease will worsen. The rash will become more widespread on your body. Other symptoms will appear, i.e. joint pain, neurological issues, etc. Heart, Eye and Liver problems have also been known to occur. And no two cases are exactly alike.

There are two tests that are widely used to confirm Lyme Disease: the ELISA test (Enzyme-linked immunosorbent assay) and the Western Blot test. The latter is administered, if the ELISA is positive. This confirms your diagnosis. Other tests may also be implemented, i.e. Polymerase Chain Reaction (PCR) and Antigen Detection. Lyme Disease is initially treated with antibiotics. It may be done orally, or by an IV.  Treatment lasts from 10-28 days. And for most patients it is effective.

According to the Center for Disease Control’s statistics, there are approximately 300K cases of Lyme Disease diagnosed in the U.S. each year.  And the numbers are increasing. About 30-40% of these cases will result in Chronic Lyme Disease, or Post-Treatment Lyme Disease (PTLD) as it is also known. These patients are profoundly affected. Patients with CLD suffer with quality of life issues that are worse than many other Chronic illnesses, i.e. Asthma, Depression, Diabetes, Fibromyalgia, even Congestive Heart Failure. Approximately 75% of the patients surveyed by lymedisease.org reported at least one severe symptom. And 63% reported two or more. Of those surveyed, 40% reported that they were unable to work. About 24% have received disability, at some point. Children with Lyme Disease may have special needs. They may have difficulties in the classroom. This isn’t the common cold. This is a long-term illness.

If you or a loved one is living with Chronic Lyme Disease, then you know the battle all too well. It is important to communicate changes in your symptoms to your doctor. Keep appointments. Take your medications. Rest. Try to maintain a level of optimism. Every victory, no matter how small, is worth celebrating. You are not alone, in this fight. But you may sometimes feel that way. Let’s be honest, your new normal feels anything but normal. Anyone with a Chronic illness can relate to that. Many Chronic illnesses are marked by flare-ups, when symptoms worsen. It’s never convenient, but you CAN do it. Adjusting to your illness isn’t easy, but it will help you to manage it. Connecting with support groups/organizations can also help, either in meetings or online. Yes, you have Chronic Lyme Disease. But you also have a life. You have plans. Dreams. Ideas to share. Places to go. So, enjoy every day to the fullest. This is your garden and it’s beautiful. It’s unique. It’s you!

 

 

Reference Links:

https://www.lymedisease.org/lyme-basics/ticks/about-ticks/

https://www.bayarealyme.org/about-lyme/what-causes-lyme-disease/

https://www.cdc.gov/lyme/prev/on_people.html

https://www.mayoclinic.org/diseases-conditions/lyme-disease/symptoms-causes/syc-20374651

https://www.mayoclinic.org/diseases-conditions/lyme-disease/diagnosis-treatment/drc-20374655

https://www.lymedisease.org/lyme-basics/lyme-disease/chronic-lyme/

https://www.hopkinsmedicine.org/news/media/releases/study_shows_evidence_of_severe_and_lingering_symptoms_in_some_after_treatment_for_lyme_disease

https://www.petmd.com/dog/conditions/infectious-parasitic/c_dg_lyme_disease

* Photo by Andreas Ronnigen on Unsplash

A Time To Laugh …

When you are diagnosed with any form of Chronic illness, it’s no laughing matter. On behalf of those who have experienced the situation, I can assure you that it’s pretty sobering. One might even call it a come-to-Jesus moment. Life suddenly isn’t as easy as it was, in the past. It’s harder. Scarier. For some, their faith becomes stronger. For others, it’s when faith is sought. The unknown has a way of diminishing one’s ability to smile, let alone laugh. Yet, Scripture teaches us that there is a time for everything — even laughter. And modern medicine has actually proven that it’s good for you!

 

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“There is a time for everything, and a season for every activity under the heavens …”                                                                      — Ecclesiastes 3:1-8 (NIV)

 

Laughter has the wondrous ability to heal and renew the body. When you laugh, it enhances your intake of oxygen. It stimulates your heart, lungs and muscles. Laughter increases endorphins in your brain. It even burns calories. And all of this helps you. With every giggle, you will relieve tension … fight stress … and relax. But that’s just the short-term benefits!

In the long-term, laughter improves your immune system. It helps to relieve pain. And it increases your level of personal satisfaction. Laughter improves your mood — including your outlook on life. You might even say that laughter sows seeds of optimism. And we all know how essential that is, when living with a Chronic illness. Laughter improves your relationships. It aids in good mental health, i.e. providing joy, relieving anxiety and strengthening resilience. A study conducted in Norway even found that people with a strong sense of humor outlive those who don’t laugh as much!

Today, the medical community is embracing Humor Therapy, also known as Complementary Therapy, to assist in the treatment of many Chronic illnesses. This therapy implements the use of laughter exercises, comedy movies, books, games, etc., to help patients cope with their disease. This has proven especially useful for Cancer patients. So, consider the benefits. 

Life is precious. And any Chronic illness is serious. But laughter really is good medicine. Indulge in it. Tell a joke. Watch a funny movie. Smile and giggle your way through a good book. Laugh. There’s no better time for it!

 

Reference Links:

https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-relief/art-20044456

https://www.helpguide.org/articles/mental-health/laughter-is-the-best-medicine.htm

https://www.cancer.gov/publications/dictionaries/cancer-terms/def/humor-therapy

https://greatergood.berkeley.edu/article/item/how_laughter_brings_us_together

* Photo by Priscilla Du Preez on Unsplash

 

Living With Sickle Cell Disease

One of the sweetest things about the summer is the sound of laughter. The sound of people enjoying each other and life — especially children. It has the ability to put a smile on the grumpiest faces. Ah, to be that young and carefree again … playing with dolls … romping in the park … discovering seashells on a beach … rounding the bases in Little League … swimming … fishing … waiting for the ice cream truck … running through the cool water of a sprinkler … catching fireflies … creating chalk art … the possibilities of a lazy, summer day are almost endless. Unfortunately, for some children, not everything in life is easy. These children live with a form of Chronic illness. And one of those illnesses is Sickle Cell Disease. The average age of onset is 2 months – 14 years. It’s sometimes even diagnosed at birth (with routine newborn screening tests).

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Sickle Cell Disease, or SCD, has been called “a neglected Chronic disease”, by some in the medical community. For a moment, let that sink in. But what exactly is it? SCD is a gene disorder that is inherited. The red blood cells of the patient are not shaped, normally. Instead of the round, disc shape, patients with SCD have red blood cells that are shaped like a sickle. Hence, the name. The disease is characterized by chronic anemia, acute pain, swelling of the hands and feet, bone and joint damage, chronic organ damage, ulcers and sometimes a reduced life expectancy. Many patients experience mild symptoms. Others have severe ones. No two patients are alike. But all must learn to live with the illness.

People have often misconstrued SCD as a “Black” disease. But, in reality, it is found in many races, i.e. Hispanics (from Central and South America), Middle-Eastern, Asian, Indian, and Caucasians of Mediterranean descent. Between 75,000 – 100,000 Americans have been diagnosed with Sickle Cell Disease. Globally, it affects about 30M people. And many who live in poor nations, with limited healthcare, are never diagnosed.         

Approximately 8% of African-Americans carry the Sickle Cell Trait. This varies from SCD, because there is only one sickle cell gene present. Those with SCD have two. Individuals with Sickle Cell Trait rarely show any symptoms and lead very normal lives.

If your child has been diagnosed with Sickle Cell Disease, it is important that you keep regular appointments with your doctor. If a specialist is needed, it is important to follow-up. Manage all of your child’s medications, carefully. You can help your child, by teaching him/her to avoid pain triggers, i.e. extreme temperature, stress, etc. Be sure to teach them not to smoke, use drugs, or drink alcohol. These things can cause pain and lead to additional problems. Encourage them to drink fluids for hydration and to rest. It’s also important to meet with their teacher/s. A child with SCD, or any Chronic illness, has special needs. Absences can add up in any school year, but health must come first. Discover how your child’s school can help, before a crisis occurs. It will make the difficult times less stressful. Your child may not always feel like taking part in some activities. Still, it is important they he/she feels included.

As your child gets older, they will be able to better communicate their concerns, feelings, pain, etc. As a parent, our first instinct is to protect our children. Some parents can become over-protective. Try to avoid that temptation. Give your child chores to do. It teaches responsibility. And that helps a child to live with any Chronic illness. Look for activities that he/she can excel in. Encourage exercise, because it will strengthen their body. Scouting. Band. Art. Dance. Various extra-curricular clubs. All will offer the chance for your child to discover what they can do, their hidden talents, build self-confidence and offer peer interaction.

Chronic illness isn’t a handicap. So, please, don’t turn it into one. Every child should be encouraged to live life, to the fullest. Like most kids, you child has dreams, i.e. college, careers, families. Dream with him/her. Help your child to set goals and attain them. The best way to accomplish this is by teaching him/her how to live with their disease. Teach your child the importance of monitoring their symptoms, taking their meds, talking to their doctor and understanding their limitations. Be open and honest with them. The more that they respect their disease, the easier it becomes to live with it. And heaven knows, it isn’t going anywhere. Love them, but try not to smother them. They need to be kids … teens … young adults. They need to live. Best of all, they can!

 

Reference Links:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4285890/

https://kidshealth.org/en/parents/sickle-cell-anemia.html

https://www.mayoclinic.org/diseases-conditions/sickle-cell-anemia/symptoms-causes/syc-20355876

https://ghr.nlm.nih.gov/condition/sickle-cell-disease#inheritance

http://www.hematology.org/Patients/Anemia/Sickle-Cell.aspx

https://www.cdc.gov/ncbddd/sicklecell/documents/tipsheet_supporting_students_with_scd.pdf

https://kidshealth.org/en/parents/sickle-cell-anemia.html

https://www.ncbi.nlm.nih.gov/pubmed/19337181

https://www.ncbi.nlm.ni

* Photo by Frank McKenna on Unsplash