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Dare to care …

This is the post excerpt.

                        Oak Allee at Brookgreen Gardens, Pawleys Island, SC

 

Did you know that 133M Americans live with a Chronic illness? By 2020, that number will exceed 150M. This isn’t my opinion. This is fact. They are our spouses, siblings, parents, grandparents, neighbors and co-workers. They are young and old. No race or social-class is immune. This is America’s health crisis! One that needs far more attention than it is getting. Awareness of this issue is important. Support for those afflicted is an even greater priority. We are in this journey called life, together. Dare to care!

Are You Searching For Peace?

No, this isn’t about Foreign relations or national policy. This is about you. Are you at peace emotionally? Unfortunately, many patients are not. So, for a moment, be honest with yourself. Has your diagnosis totally turned your life upside down? Is stress and anxiety eating away at you? Fear troubling you? If your answer is “yes”, to any or all of these questions, it’s time to talk about it. First, as I previously stated, you aren’t alone. It isn’t easy to adjust to life with a disease. It’s a sucker-punch. Anyone who has a Chronic illness understands how you are feeling. We have all rode that runaway train of emotions. The denial is real. The frustration and anger is, too. Think of it like the stages of grief that follow the death of a loved one. You are basically grieving the loss of the life you had. The one you enjoyed. It was your comfort zone, even on the bad days. But now … well, now, bad days have a whole new meaning.

 

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“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” — John 14:27 (NIV)

 

As crazy as it may sound, the key to this madness in part is learning how to be sick. It’s like a marathon of coping — 24/7. Why? Because your Chronic illness isn’t a sore throat, or the sniffles. It’s a life change. And sometimes it’s tough. Many of us naturally resist difficulties. We ignore them. But that technique won’t work, here. This is about embracing reality …

There are five stages of grief that patients struggle with, after they are diagnosed:

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

While it may feel like an overwhelming nightmare, it is a normal process. So, examine these stages and consider which one you are in. Only you truly know that answer. And let me add, no two patients go through them at the same pace. But progressing through them is your goal.

Now, let’s consider the ways to make life with Chronic illness a little easier:

  • Educate yourself. Learn everything you can about your illness. Soak it up, like a sponge.
  • Put together your Support System, i.e. family, close friends, etc. You might even want to join a local Support Group. Many health organizations offer these opportunities. And numerous places of worship do, too. They can be found online or your doctor can help you find one.
  • Surround yourself with positive people and things. Negativity and pessimism aren’t healthy. Optimism is healthy. That too is key to coping and disease management.
  • Find a hobby,  create a reading-list, etc. On tough days, it will give you something positive to focus on.
  • Many patients find that faith helps them. Bible Study, Prayer Groups, personal prayer, etc., can be very beneficial to the body and mind.

Inner peace isn’t as simple as going to the doctor, taking a session of physical therapy, or picking-up your meds. It’s a very personal journey. Sometimes, it can feel incredibly lonely. That too is normal. Hence, the need for a good Support System. If your mobility is limited, or pain has you feeling down, you can turn to the internet. Sites like this one are created to help you. 

Last, but not least, do not punish yourself for being sick. Chronic illness is caused by many things, i.e. lifestyle, genetics, environment, etc. Some we can change, i.e. smoking, alcohol consumption, weight loss, exercise. Others are beyond our control. As you search for peace, it helps to feel that you have some control over what is happening to your body and your life. So, by all means, eat healthier … exercise … make necessary lifestyle changes. These are all positive things. And it can be as simple as a walk around the block. Or you may prefer a class, i.e. Tai Chi, Pilates, Yoga, Swimming, etc. If you need a nap, then take one. You might even want to keep a journal and share it with your doctor. These changes will allow you to better manage your Chronic illness and no doubt feel better (physically and emotionally). 

We are on a journey. Millions of us. We didn’t plan on taking this trip, but we are going. Together, we can the most of it. We can support each other, learn and inspire. We can live to the fullest!

 

Reference Links:

https://www.rsnhope.org/health-library/finding-acceptance-psychological-stages-chronic-illness/

https://www.psychologytoday.com/us/blog/turning-straw-gold/201809/7-tips-making-peace-chronic-pain-and-illness

https://www.psychologytoday.com/us/blog/the-science-behind-behavior/201607/4-reasons-why-optimistic-outlook-is-good-your-health

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

https://www.canada.ca/en/public-health/services/chronic-diseases/arthritis/arthritis-risk-factors.html

*Photo by Arif Riyanto on Unsplash

 

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Your Privacy, Your Chronic Illness & Your Job

Don’t let anyone fool you. When you live with a Chronic illness, you do a lot of thinking. You make a lot of decisions. Cool tee shirt aside, life really is filled with tough choices. And if you haven’t juggled many in your past, a Chronic illness will change that quickly. Which doctor do you trust? Which treatment do you choose? Which medication/s will work best? And aside from these obvious questions, you also wonder about your privacy. Yes, HIPAA is a great thing. And there are similar protections in place abroad, i.e. PIPEDA, Directive on Data Protection. But, outside of medical community, who do you share your illness with? Who do you entrust with that personal information? How much is, well, too much?

 

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Let’s start with your family and close friends. They are usually part of your support system. And, yes, they need to know about your diagnosis. Especially, those who are closest to you. A strong support system will help you to manage your condition more effectively. Providing them with additional information is also helpful, i.e. the name of your doctor, your medications, etc. Next, is your workplace. And that’s an entirely different animal!

Legally, you are not required to disclose a Chronic illness to your employer. An employer hires you to do a job. If you are capable of doing that job, you are fulfilling your end of the deal. This also holds true, if you are seeking employment. On the other hand, some say the added stress of trying to conceal their condition was/is frustrating and difficult. There is no wrong answer, here. It really depends on what you are comfortable with. You may choose to discuss your illness with HR, but not your co-workers. That too is okay. Nobody wants to be gossip fodder for the break-room. This is about your health and your privacy.

Many patients learn what their group health plans offer, after they have been diagnosed. Better late than never, I guess. When you are living with good health, you are truly experiencing a blessing. But knowing your health coverage is also the peace of mind that will help you to sleep at night. Take a few minutes to actually get those facts. And if you have never taken the time to acquaint yourself with Labor Law, here are two key pieces of legislation to start with: The Family Medical Leave Act and the Americans With Disabilities Act. Living with a Chronic illness, you may need to use one or both at some point. Understanding them is crucial. Sadly, disability discrimination still exists in our society. And many Chronic illnesses can lead to a disability. If you ever feel your employer is harassing you, or is discriminating against you, due to your Chronic illness … you can contact the Equal Employment Opportunity Commission or EEOC. Know your rights. They exist to protect you.

Last, but not least, go out and LIVE! Don’t allow your disease to define you. It isn’t what you are, it is just a part of who you are. So, make plans. Work. Travel. Finish Grad School. Buy a home. Start a family. Set goals. Dare to dream. The choices are waiting and they’re all yours!

 

Reference Links:

https://www.hhs.gov/hipaa/for-professionals/security/laws-regulations/index.html

https://www.atlantic.net/hipaa-compliant-hosting/beyond-hipaa-international-health-data-protection-europe-canada/

https://www.dol.gov/whd/fmla/

https://www.ada.gov/2010_regs.htm

https://www.eeoc.gov/facts/ada18.html

https://www.eeoc.gov/laws/types/disability.cfm

*Photo by Jose Llamas on Unsplash

 

 

An Apple A Day …

Remember the old Welsh proverb that this title alludes to? Well, as it turns out, that saying is more fact than cliche. Apples are healthy for us. In fact, many research studies suggest that apples may be one of the healthiest foods you can eat! And they taste so incredibly good too!

 

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Apples come in over 2,000 varieties, ranging from sweet to sour in taste. So there is something for everyone, no matter your preference. A serving, or one medium-sized apple, contains about 95-100 calories. It also contains 0 gram fat, 1 gram protein, 25 grams carbohydrate, 19 grams sugar (naturally occurring), and 3 grams fiber. Apples are also low in sodium and cholesterol. And they provide a good source of vitamin C as well as fiber. If you are on the AIP diet, also known as the Autoimmune Protocol diet, for  Psoriasis, Rheumatoid Arthritis, or Lupus, you’re probably already eating apples. But they can also help patients with other Chronic illnesses, i.e. Heart disease, specific Cancers, Alzheimer’s disease, Dementia, Obesity, Diabetes, Stroke, etc. Imagine that!

You’ll also find an endless array of recipes (including low-carb) available online, in cooking magazines and cook-books, to help you incorporate apples into your weekly menu. Or you can enjoy one, right from the fruit-bowl. Maybe, a serving of apple juice with breakfast? My personal favorite is applesauce. Sometimes, simple is the best. So, by all means, indulge yourself. It’s September. The apples are fresh and bountiful. It’s time to enjoy them and reap the benefits of better health! 

 

Reference Links:

https://www.medicalnewstoday.com/articles/267290.php

https://www.webmd.com/food-recipes/benefits-apples#1

Apples

https://www.bbcgoodfood.com/howto/guide/health-benefits-apples

https://healingautoimmune.com/aip-food-list

36 Easy AIP Recipes That Won’t Stress You Out

https://www.cookinglight.com/food/in-season/healthy-apple-recipes?

https://www.countryliving.com/food-drinks/g4650/healthy-apple-recipes/

*Photo by Shelley Pauls on Unsplash

Heredity & Chronic Illness

Tracing one’s ancestry has become a very popular thing, these days. It’s fun. Surprising. Sometimes, even a tad mysterious. Folks can’t seem to get enough of their past. They want to know more. In doing so, we inevitably look at old photographs and compare our likeness to those of our ancestors. Mom’s auburn hair. Dad’s deep-blue eyes. We admire military service. We notice things like multiple births, activism, alma maters. And we smile at those reoccurring “family names”. Personally, I represent the sixth generation to utilize some variant of “Julia”, i.e. Julie, Juliette, Juliana, even a Julian. Obviously, the paternal side of my family likes the name.

We also marvel at other things that we share with the generations before us, i.e. personality traits, dimples, freckles, receding hairlines, etc. In some cases, even professions like medicine, teaching, or law enforcement transcend the generations. All connect us. But how many of us are paying attention to the illnesses that run through our family tree? Like hair color, height, etc., our health is genetically linked to our ancestors. Which is why many Chronic illnesses run in families. And also why millions of dollars have been devoted to genetic research, in the last two decades.

 

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Although 70% or more of our disease risk can be linked to our environment, genetic factors also play a role. We may not be born with a specific disease, but our genetic predisposition or susceptibility may place us at a greater risk of acquiring it in life. There are four types of genetic disorders:

  • Single gene inheritance
  • Multi-factorial inheritance
  • Chromosome abnormalities
  • Mitochondrial inheritance

The World Health Organization has done extensive work regarding noncommunicable diseases, i.e. Cancer, Diabetes, Heart disease, Mental illnesses, etc. This research and that of others (CDC) tells us that it isn’t just our shared genes. Many families share common environments and lifestyles, i.e. smoking, diet, drug or alcohol use. Gender, age, race or ethnicity can also effect our risk. For example, Diabetes is 60% more common in Blacks than in Whites. Blacks are also more likely to die from Asthma than Whites. Fighting this problem goes beyond genetics. It means we must change the system for testing new drugs. We must improve health education. And we must overcome disparities in healthcare.

If you haven’t taken the time to consider your family medical history, I encourage you to do so. Everyone should. Share this information with your doctor/s. It’s possible to work together and prevent some diseases. If you have been diagnosed with a Chronic illness, remember that early treatment can help you to better treat/manage your condition. That’s extremely important.

Our genes are comprised of DNA. It’s the molecule that is the hereditary material found in all living cells. And the genome is the sum total of any organism’s DNA. It’s complex, I know. So, just keep this in mind … the way our genes work can be positively influenced, i.e. good nutrition, exercise, avoiding substance abuse, etc. We don’t have to inherit everything, good and bad, from our ancestors. We have options. It’s time to utilize them. Choose to live well!

 

 

Reference Links:

Chronic disease: Genes matter, but so does environment

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4841510/

https://www.medicinenet.com/genetic_disease/article.htm

https://www.cdc.gov/genomics/famhistory/famhist_chronic_disease.htm

https://www.webmd.com/cancer/features/precision-medicine-dna-lifestyle#2

https://www.cdc.gov/heartdisease/family_history.htm

https://www.who.int/genomics/public/geneticdiseases/en/index3.html

Epigenetics – How the Environment Influences Our Genes

https://www.theatlantic.com/health/archive/2011/11/how-health-and-lifestyle-choices-can-change-your-genetic-make-up/247808/

https://www.webmd.com/hypertension-high-blood-pressure/features/why-7-deadly-diseases-strike-blacks-most#1

*Photo by Tregg Mathis on Unsplash

One Thing Can Lead To Another …

Dare I say it? Yet, if you are living with a Chronic illness, you know it’s true. Secondary conditions happen. In fact, by 2020, it is projected that 157M Americans will be living with some form of Chronic illness. And 81M, well over half of them, will have multiple conditions. But what exactly are these secondary illnesses? The list is long and complex, i.e. Depression, Anxiety, Lupus Nephritis, Pericarditis, Sjögren’s SyndromeCushing’s Syndrome, Secondary Raynaud’s, Secondary Fibromyalgia, Myocarditis, Anemia, Dysphagia, Glaucoma, etc. This isn’t about a low-grade fever, or stiffness. These secondary conditions are serious health problems, in their own right. And when they follow your initial diagnosis, it is both scary and frustrating.

 

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Because of the sheer nature of how a Chronic illness effects a patient, from onset through progression, I want to focus for a moment on Depression and Anxiety. Both are common among the chronically ill. Life is changing. Physical and/or mental abilities are changing. To say that it’s overwhelming is, well, an understatement. The diagnosis alone usually hits a patient like a ton of bricks. Some chronic illnesses, i.e. Parkinson’s, Stroke, etc., actually effect the brain. These changes can directly lead to Depression. Anxiety and stress can also lead to depression. Both are felt by patients who live with any Chronic illness. And a secondary diagnosis can magnify these problems.

If you are experiencing symptoms outside the norm for your diagnosed condition, you should talk to your doctor. You may be living with a secondary illness. And it should be treated — not ignored. A good Support System will help you to cope with your Chronic disease as well as the secondary, i.e. family, friends, doctor, etc. Think of it as a “team sport”! Support Groups are available in many areas. If you are interested, you can contact national organizations for details, i.e. American Cancer Society, SAMHSA, American Lung Association, American Heart Association, The Arthritis Foundation, etc. Or simply ask your physician. These are very beneficial for caregivers, too.

Optimism is also key to living with and effectively managing your Chronic condition. Understand your illness — don’t just accept the diagnosis. If you want another medical opinion, ask for one. It is your body and your right. Learn the facts. Knowledge is power. Find out what you can do, i.e. diet, exercise, medications, etc. Pace yourself. Delegate tasks to reduce your stress level. Understand that setbacks can and usually do happen. Secondary conditions are common. Pursue preventative measures, if possible. If not, maintain your perspective. Blaming yourself isn’t going to help the situation. A Secondary Condition isn’t the end of the world. Let’s say that, again … a Secondary Condition isn’t the end of the world. It’s just a curve-ball that you must deal with. And you can. Millions of patients are doing it. So, give it your best shot! 

Always make the most of every day. Even the difficult ones are a gift. Although, they may not feel like one. With a positive approach, you will also feel better both mentally and physically. You will be able to manage the changes, too. And get back to living!

 

 

Reference Links:

https://www.nationalhealthcouncil.org/sites/default/files/AboutChronicDisease.pdf

https://medlineplus.gov/ency/patientinstructions/000602.htm

Secondary Conditions

http://www.jrheum.org/content/46/2/127

Managing Multiple Rheumatic Diseases: How One Patient Copes with Her Disabilities & Advocates for Others

https://www.cancer.org/treatment/support-programs-and-services.html

https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml

https://www.samhsa.gov/find-help/national-helpline

https://www.ncbi.nlm.nih.gov/books/NBK11438/

https://www.lung.org/support-and-community/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5209342/

*Photo by Kyle Glenn on Unsplash

Self-Worth & Chronic Illness

Merriam Webster’s Online Dictionary defines self-worth as “a sense of one’s own value as a human being”. In other words, your self-esteem. When you have a Chronic illness, often times your self-worth takes a beating. Your body has changed. In many cases, your abilities have changed. It’s difficult to bear, acknowledge and know that others see it too. It hurts. And it can be embarrassing. But that doesn’t mean you are less of a person. Sometimes, your weaknesses, i.e. disease, limitations, etc., awaken other talents. They offer perspective that you never had before. Both are positive things. The question is: How do you see yourself? Do you feel that you are less of a person, because of your diagnosis? Less capable? Less valuable? Do you view your self-worth for what it really is, or do you literally allow a condition to play tricks on you? Do you degrade yourself? Only you know the answer. So, take a moment to reflect and be honest with yourself.

 

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“We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop.”      — Mother Teresa

 

Millions have heard of the tiny nun from Calcutta who was known simply as Mother Teresa. When she followed her religious call, she hit the ground running. She founded a school — small but effective. In 1946, she founded the Missionaries of Charity. Yet, Mother Teresa did not stop there. She kept on going. Her decades of compassionate work with the needy of the world earned her a 1979 Nobel Prize, in Humanitarianism. In 2016, less than a decade after her demise, she was canonized by the Roman Catholic Church as Saint Teresa. Even in death, her work lives on. In fact, there are 700 missions in 130 countries — all are the result of the actions of this one woman. They are providing soup kitchens for the hungry, family assistance centers, orphanages, schools and hospitals. And they are operating homes for people who suffer with Chronic diseases like leprosy, AIDS and tuberculosis. But what most people don’t know is that Mother Teresa herself suffered from a Chronic illness (Heart Disease).

Now, you probably aren’t aspiring to earn a Nobel Prize. And that’s okay. My personal feeling is that Mother Teresa wasn’t trying to get one, either. She was merely doing the work that she loved to do. The work, or service, that she felt compelled to do. No doubt, she had the grace of God with her. And she was doing great things. Still, she had to have bad days. With any Chronic illness, those are inevitable. But she didn’t let anything slow her down, for long … not even her condition. She persisted, long before the term was mainstreamed by the feminist movement. She made goals and she went after them. The woman truly lived. Which brings me back to your self-worth …

Despite your Chronic illness, you are significant. Precious. Important to others. Your vocation, whatever it may be, is important too. You have the ability to teach, inspire through words and example, lead, love, work, etc. Your resume, education, achievements, etc. haven’t changed. Your health has. Your life isn’t over, because of a diagnosis. You are just writing a new chapter!  And it just may be one of the most fascinating yet!

So when your disease gets you down, keep your perspective. Think of it as a rain-delay … not the end of the game. Stay optimistic. Be tenacious. Fight the good fight. Manage your Chronic illness. Do the things you enjoy doing — the things you want to do! Set a few goals. You may even want to jot them down. Put your list on the fridge. Then, work toward attaining them. Never underestimate yourself, or your worth. Value it, daily. And live your life to the very fullest!

May God Bless …

 

Reference Links:

https://www.biography.com/religious-figure/mother-teresa

https://www.upi.com/Archives/1991/12/30/Mother-Teresa-hospitalized-with-serious-illness/5258694069200/

https://academic.oup.com/eurheartjsupp/article/6/suppl_E/E2/455705

https://www.motherteresa.org/about.html

 

*Photo by Jimmy Chang on Unsplash 

A Primer: Packing A Healthy Lunch

It’s August already. How in the heck did that happen? While many of us are trying to squeeze the last precious moments out of summer, others are already dreading that ritual of packing a lunch. Eating healthy should be everyone’s priority. But the flesh is weak, especially around foods we ought to limit eating. If you think this is a post about packing a child’s lunch, you’re only half right. Many adults also pack a lunch. Sadly, 50% of American adults skip lunch altogether. They opt to snack, instead. In fact, 44% confess to having a snack-drawer at work. And snacking usually leads to unhealthy habits, difficulty maintaining or losing weight, exhaustion, even premature aging. For those young and old, who live with a Chronic illness, fast-food and snacking can make managing your disease much harder. Who needs that? So, let’s talk healthy lunches that are easy to make and delicious too!

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Starting with the kids … if you feel your child’s school offers healthy choices, then the cafeteria may not be a bad idea. But before you make any assumptions, remember that you know your child best. You know what he or she will eat. You know what temptations they easily fall for. And you probably have a general idea of the school’s menu. Now, ask yourself a couple of questions: Are there healthy options for my child? Will he/she make those choices? If you respond emphatically with a “No!” to either question, it’s probably best to pack a lunch from home. It’s also important that your child understands why you are doing it. Think of this as a life lesson that will help them for years to come.

Some great lunchbox choices for kids are:

  • Fresh or Dried Fruit
  • Crunchy Veggies
  • A Meat or protein food, i.e. sliced meat, a chicken-leg, hard-boiled egg, etc.
  • Remember dairy, i.e. cheese, yogurt and milk.
  • A starchy food like, i.e. bread, roll, pita, fruit breads, or crackers.
  • A bottle of water is always appreciated.

If you are packing a lunch for yourself or your spouse/partner consider these:

  • The cold cut sandwich that always hits the spot.
  • Your favorite salad (Like kids we benefit from fruit & veggies).
  • A quesadilla.
  • Maybe, a rice bowl.
  • Hummus with a few pita chips.
  • Cheese, cottage cheese, or yogurt.
  •  Some rotisserie chicken and vegetables.
  • Soup (Remember that canned is high in sodium).
  • Quiche
  • A bottle water works for you, too.

I know. I know. It sounds hard. You’ve already got a zillion things to do. But if you just think about it, packing these lunches can get a lot easier. For example, left-overs can easily be used in a lunch. Recruiting the kids to help you “shop” for ideas is teaching them and encouraging good choices. And a well-stocked pantry takes a lot of frustration and time out of packing. If the healthy side of it doesn’t appeal to your spouse/partner, try the more practical angle. How much do you spend on lunch at a restaurant? Now, multiply that amount by five days a week. Then, 52 weeks in the year. Wow! It adds up. Packed lunches are less expensive and that savings can be used for other things. In other words, you can eat healthier and have a reward for doing it! Now, that’s what I call living well!

 

Reference Links:

https://nypost.com/2018/08/30/half-of-us-workers-dont-feel-like-they-can-take-a-real-lunch-break/

https://www.betterhealth.vic.gov.au/health/healthyliving/lunch-box-tips

http://www.diabetes.org/food-and-fitness/food/what-can-i-eat/food-tips/quick-meal-ideas/quick-lunch-ideas.html

https://www.bonappetit.com/story/100-lunch-ideas

https://www.menshealth.com/nutrition/a27504997/healthy-meal-prep-work-lunches/

https://money.howstuffworks.com/personal-finance/budgeting/how-much-cheaper-to-pack-lunch.htm

*Photo by Mae Mu on Unsplash