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

 

 

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You & Your Doctor: Is The Relationship Working?

It’s a tough question, but a pertinent one. Is the relationship with your doctor working? Many patients may not even consider the interaction between themselves and their doctor/s to be a “relationship”. They might even laugh at the thought, feeling the term is meant for something more intimate. But that’s exactly what it is — a relationship. One that has been discussed in thousands of medical articles and books, dating back to Hippocrates. And where Chronic illness is concerned, it’s a long-term partnership for your health. If it isn’t working, guess who suffers the consequences? You. 

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Doctors often know what spouses, partners and children do not know. After all, HIPAA now defines who a physician talks to about your health. It’s meant to protect your privacy. Discussions between a doctor and patient vary, i.e. diagnosis, medications, test results, symptoms, complications, etc. These are very important and highly personal. So, trust is key.

When trust exists between a doctor and patient, it is beneficial to both parties. Trust results in better communication and smarter decisions. That in turn results in the best of health care. A good doctor-patient relationship is the foundation for ethically practicing medicine. It is the responsible approach, by any physician. And one that every patient can certainly appreciate.

Do you trust your doctor? Are you comfortable discussing your health with him/her?When you have an appointment, do you feel that you are given adequate attention? Are your test results explained to your satisfaction? Were your questions answered? Were you even given an opportunity to speak? If you answered “no” to one or more of these questions, then you may seriously need to consider the future of your doctor-patient relationship.

Do you feel as if you aren’t being heard (not for lack of trying)? Do you sometimes feel like a helpless guinea pig? Have you ever left your doctor’s office feeling like you’ve just experienced a fly-by from an F-22? Dazed. Scared. Frustrated. Anxious. Has your condition worsened under your doctor’s treatment approach? Have you lost confidence in your doctor’s abilities? Or in his/her game-plan for your health? Have you ever felt insulted by your doctor’s remarks? Or perhaps it was his/her tone that made matters worse? Does the thought of finding another doctor ever enter your head? If you answered “yes” to one or more of these questions, then your doctor-patient relationship has issues. You may need to make a change.

Back in 2006, a medical study asked Mayo Clinic patients what traits they considered to be “ideal” for any doctor. The patients involved were seen by doctors in 14 various medical specialties. The seven most sought traits, according to those participating in the study, were as follows:

  • Empathetic
  • Humane
  • Confident
  • Forthright
  • Personal
  • Respectful
  • Thorough

It’s not a lot to ask, when you think about it. Does your doctor fit the description? Or do you wish that he/she did? Only you know for certain.

If change is on the horizon, it’s important to do a little “homework” beforehand. There are reference links below that can help you. But, first and foremost, talk to your healthcare insurance. You want a doctor that is in their network. Healthcare is expensive and complicated enough. There’s no need to exacerbate those areas. Next, you want to know about the doctor’s Board Certifications. Where did he/she attend Medical School? Some are more distinguished than others. Then, you should consider the hospital/s that is connected to the doctor. This is where you may one day go for tests, treatment, possibly surgery. Be aware of any disciplinary action, or lawsuits, that involve the doctor or hospital. Ask about the doctor’s connections with Big Pharm. Is he/she working for you or them? You want the best medication for your condition, not a choice that has been heavily influenced by a sales-pitch. And, unfortunately, this does happen. So, don’t be shy. Ask questions. Expect and get answers. What are their office policies? Do they offer Patient Portals that are available 24/7 online? This is a relationship; remember? If it feels right, move forward and make the change. If not, keep looking until a more compatible physician can be found. 

Your health and well-being depends greatly upon your doctor and the relationship that you build with him/her. So, never hesitate to be actively involved. This is, after all, your life. If you have a doctor who you can trust, then you have the makings of a good relationship. Talk candidly. Work together. Become a team. You will find that you’re better equipped to manage your Chronic illness and less stressed. Setbacks are inevitable, but so are the solutions. And a better quality of life is always the goal!

 

Reference Links:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1496871/

https://www.webmd.com/a-to-z-guides/news/20060309/7-key-traits-of-ideal-doctor#1

http://certificationmatters.org/

https://apps.ama-assn.org/doctorfinder/

https://www.healthgrades.com/

https://www.ama-assn.org/practice-management/hipaa-privacy-rule

https://www.abms.org/board-certification/

https://www.ama-assn.org/delivering-care/code-medical-ethics-patient-physician-relationships

*Photo by Marcelo Leal on Unsplash

 

 

A Lonely Garden …

A little solitude can be a wonderful thing. It allows us to rejuvenate and pamper ourselves … dream … even take a snooze. If you’ve ever taken a quick escape to a garden bench … a porch swing … a hammock … a lake house, etc., then you know what I mean. It’s nirvana.

Unfortunately not all loneliness is planned, welcomed, or even short-term. Call me melodramatic, if you must. But there is a loneliness that can come ever so easily, when you live with a Chronic illness. It slips over you — like a fog rolling in. And it’s unlike any loneliness that most have ever experienced. Why? Because it isn’t sought, or expected. It just seems to hit you, with the speed of a sucker-punch. In part, I think it comes from the lifestyle changes that the disease creates. How family and friends react to your diagnosis can also be a factor. How you accept your condition, its restrictions, etc., can be another. Everyone’s life seems to move on. And yours seems to hold you back. At its worst, this can lead to Social Isolation. And somewhere in the midst of it all, you’ll probably find Depression.

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Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” — 2 Corinthians 1:3-4 (NIV)

Most of us are familiar with loneliness, because we’ve all experienced it at some point in our lives. Many times, by choice. But this isn’t that. Social Isolation, by medical definition, is “A state in which the individual lacks a sense of belonging socially, lacks engagement with others, has a minimal number of social contacts and they are deficient in fulfilling and quality relationships”. It is often associated with Seniors, especially those who live alone. But it isn’t confined to that age group. Depression, by medical definition, is “An illness that involves the body, mood, and thoughts and that affects the way a person eats, sleeps, feels about himself or herself, and thinks about things.” Like Social Isolation, Depression can occur at any age.

When a person is diagnosed with a Chronic illness, a second condition sometimes presents itself. Many patients have multiple Chronic illnesses. Juggling these conditions, symptoms, medications, etc., can lead to emotional and mental health issues. Social Isolation can be a facet of Chronic illness. Depression can, too. And loneliness plays a role in both. In fact, loneliness can be as bad for patients as the Chronic illness that they are living with, i.e. COPD, Epilepsy, Fibromyalgia, Rheumatoid Arthritis, Diabetes, etc. This is why a good support system is so vital for every patient. Some will find that social media is helpful, in filling the void. Others will tell you that it is even more depressing. Studies have actually made the same conclusions — helpful to some, harmful to others. So, what should we do?

If you have been diagnosed with a Chronic illness, you know how your life has changed. Still, living each day to the fullest should remain a priority. It’s important for you to stay socially engaged. How you do so may change, but participation is key. Your support system can help with that. Faith can also be comforting and empowering. Sometimes, just a little conversation on the porch is a godsend. How about a walk? A movie? Maybe, a pot-luck supper with friends? Or a phone call? And if your illness has impacted the clubs, sports, etc., that you once actively enjoyed … don’t allow it to get you down. Millions can relate to what you are going through. They too have made adjustments. So, please look for new options. I assure you, these alternatives do exist.

Chronic illness, as odd as it may sound, can actually open the doors to many positive experiences. But you must be willing to try them. If you need ideas, talk to your doctor. Go online. Many community groups and churches offer options, too. Explore a few. Instead of pulling away from life, be willing to do something new. Get involved. Connect with others. Make some new friends, along the way. It’s healthy. It’s fun. It’s an awakening, of sorts. A chance to find new talents and satisfaction. Your garden, or life, doesn’t have to be desolate. It can be a place of wondrous discovery, despite your health condition. No illness, or age, should be allowed to define you or me. Nor should it be allowed to rob us of fulfillment and happiness!

 

Reference Links:

https://www.medscape.com/viewarticle/769914

https://www.medicinenet.com/script/main/art.asp?articlekey=2947

https://www.mwhealth.org/Portals/0/Uploads/Documents/Understanding_Social_Isolation_Chronic_Conditions.pdf

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

https://www.theguardian.com/society/2017/oct/12/loneliness-as-bad-for-health-as-long-term-illness-says-gps-chief

https://www.psypost.org/2015/02/study-discovers-new-link-chronic-disease-social-isolation-31691

https://www.psychologytoday.com/us/blog/talking-apes/201801/does-using-social-media-make-you-lonely

https://www.psychologytoday.com/us/blog/the-antidepressant-diet/201706/social-loneliness-may-make-the-depressed-even-more-so

https://www.cnbc.com/2015/12/07/many-doctors-cant-manage-multiple-chronic-conditions.html

https://patient.info/doctor/social-isolation-how-to-help-patients-be-less-lonely

* Photo by Aaron Burden on Unsplash

A Patient Has Rights

When you or a loved one is sick, there’s a lot to juggle. Tests. Medications. Sometimes, surgical procedures. There’s endless questions to ask. Answers that are desperately needed. And no matter how earnestly you address this upheaval, you are bound to forget something. In healthcare, your crisis is just another day at work. But for you as well as your loved ones, it’s life-altering. Scary. Often times, it may seem easier to just nod and follow along. You may find yourself even doing so, despite the concerns that are keeping you awake at night. Perhaps, you just don’t want to make a fuss? Appear difficult? Take up too much of the doctor’s time? Anyone who has ever been diagnosed with a Chronic illness understands your hesitation, confusion, fears. You want to get well — not make waves. But this isn’t Obedience Training for a new puppy. This is your life — your health. And you have rights. It’s important to know them! 

 

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Back in the summer of 1970, a grass-roots organization called The National Welfare Rights Organization (NWRO) drafted a document of 26 requests regarding healthcare treatment. This became the first Patient’s Bill of Rights. Their action came on the heels of a revision to hospital standards, by the Joint Commission on Accreditation of Hospitals. After several months of negotiation, many of the requests were included in the revised hospital standards by JCAH. In 1972, the American Hospital Association adopted a Patient’s Bill of Rights for operational use. By 1988, all 50 states had adopted a form of the Patient’s Bill of Rights to protect patients. The American Medical Association (AMA) followed suit, a year later. In 1992, the Patient’s Bill of Rights was acknowledged Federally and updated. Another revision took place, in 2010, on the Federal level. And most recently, at the Federal level, a revision was added this year to include the “Right To Try” for terminally-ill patients. 

According to the World Health Organization (WHO), most nations have a form of a Patient’s Bill of Rights that stem from the Universal Declaration of Human Rights (1948). They may vary slightly, but all were created to protect the patient. This is something to remember, when traveling abroad.

Yet, despite these many actions, Patient’s Rights are still violated. In 2016, the National Institute for Patient Rights (NIPR) conducted a study to see just how well the system works. Their findings comprised a list of the Top Ten violations of Patient’s Rights:

  • The failure to communicate
  • Adequate presentation of treatment options.
  • A lack of respect for advance directives.
  • Miscommunication.
  • Conflict between medical team & patient/advocate.
  • The right to know hospital charges and payment methods.
  • The right to review the patient’s bill.
  • Knowledge of hospital resources, including the complaints & grievance process, patient representatives, or ethics committee.
  • The right to know the identity & professional status of those working on the patient.
  • The right to review medical records, account information, etc.

It’s difficult trying to juggle the overwhelming news of a diagnosis, treatment, etc. But the process will be easier, in the long run, if you aren’t afraid to ask questions. Patients have rights. It’s a matter of professional ethics and law. Caregivers, advocates and/or family members can help by discussing a patient’s concerns with them. Make notes. That way, questions will be answered to the satisfaction of the patient. And if they aren’t, take action. Your health, or the health of a loved one, is too precious to leave to chance.

 

Reference Links:

https://www.law.cornell.edu/cfr/text/38/17.33

http://www.nationalhealthcouncil.org/resources/nhc-publications/principles-patients-rights-and-responsibilities

https://legal-dictionary.thefreedictionary.com/Federal+Patients%27+Bill+of+Rights

https://www.cms.gov/CCIIO/Programs-and-Initiatives/Health-Insurance-Market-Reforms/Patients-Bill-of-Rights.html

http://thehill.com/policy/healthcare/104767-president-obama-unveils-patients-bill-of-rights

http://thehill.com/opinion/healthcare/389514-right-to-try-is-a-win-for-patient-rights-and-president-trump

http://techfeatured.com/automotive/1430/patient-rights-top-ten-list-of-most-violated

https://www.encyclopedia.com/science/encyclopedias-almanacs-transcripts-and-maps/patients-rights-i-origin-and-nature-patientsrights

http://www.who.int/genomics/public/patientrights/en/

* Photo by Mariano Rossi on Unsplash

I’m Gonna Soak-up The Sun …

We have all been warned about too much sun exposure and harmful ultra-violet rays. In the process, awareness and prevention turned into absolute fear for some people. Yet, we rarely hear anyone talk about the benefits of sunshine. And the benefits do exist. The sun IS  healthy. In fact, WHO (World Health Organization) has noted that over 3B people worldwide are possibly suffering from ailments that are the result of very low levels of UVR (Ultraviolet Radiation). These maladies include many Chronic illnesses and musculoskeletal disorders. So whether you currently have a Chronic illness or not, you need to indulge in its warmth. Because moderate sun exposure IS a good thing!

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Personally, I find it difficult to select the best benefit from sun exposure. There are so many. But one of the most significant is Vitamin D. Unlike other vitamins that we need, Vitamin D can be synthesized in the skin through a reaction that is initiated by UVB radiation. Just 30 short minutes of sunlight, while wearing a swimsuit, can release up to 50,000 IU into the body! And Vitamin D plays a helpful role with so many Chronic illnesses, i.e. Cancer, Cardiovascular diseases, Diabetes, Auto-immune diseases, etc. It is one of the most essential nutrients that we need to maintain good health. 

Another important benefit of sunlight is the positive effect that it has on our mood. It has long been known that higher levels of serotonin equate to having a better mood, i.e. happy, satisfied, calm. Lower levels are linked to depression and anxiety. A medical study, done in Australia, found that our bodies actually have more serotonin on sunny days than on the dreary ones. Hence, the basis for Seasonal Affective Disorder (SAD) a type of Depression. Serotonin is also linked to weight loss. Still, there’s more …

If you suffer with joint pain, then you know that the warmth of the sun is literally soothing to your body. Warmer weather seems to always bring greater mobility and less pain. Would you like to lower your blood pressure? Research has shown that nitric oxide in the top layer of our skin actually reacts to sunlight. This reaction causes blood vessels to widen as the oxide moves into our blood. And the result is a lower BP! Exposure to sunlight has been linked to getting a restful night of sleep, as well. We can all use that. And many skin disorders, i.e. eczema, acne, psoriasis, have a positive response to UV light treatment.

Summer is here, in all its glory. So take advantage of what the sun CAN do for you. Get outside. Use an SPF of 15 or higher. Remember that moderation is imperative. Nobody needs to overdo it, so stay hydrated. Take your MP3 player or a radio … turn-up the volume … enjoy your favorite music. Read a book on the chaise lounge. Go for a walk around the block. Swim a few laps in the pool. Hit a bucket of golf-balls on the driving range. Wiggle your toes in the sand. Have fun. And soak-up the sun!

 

Reference Links:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2290997/

https://www.health.harvard.edu/diseases-and-conditions/benefits-of-moderate-sun-exposure

http://time.com/4888327/why-sunlight-is-so-good-for-you/

https://www.webmd.com/mental-health/news/20021205/unraveling-suns-role-in-depression

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5440113/

* Photo by Aaron Burden 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

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