Fatigue: Are you spent?

Well, here we are — a mere five days into 2018 — and I feel like I’ve just ran from coast to coast. And it wasn’t a winner’s sprint to victory. If you struggle with fatigue, you know what I’m talking about. The usual routine can leave you drained of all energy. But when you add the demands of the holiday season — WOW! Spent just doesn’t seem to describe the exhaustion, or the effects that it can have on the body. At times, getting through the day feels like a test in survival.

Fatigue is common among patients with Chronic illnesses. And 133M Americans live with at least one, in some form. The symptoms vary, from one patient to the next, but all of them are difficult, i.e. excessively tired, headaches, dizziness, pain, muscle weakness, slowed reflexes, moodiness, impaired hand-eye coordination, short-term memory problems, low motivation, etc.

Let’s be clear. I’m not talking about sleepiness. If you stay up all night to watch a baseball game that went into extra innings, you know why you feel sluggish the next day. Sleepiness is not fatigue. The first is a short-term problem. The second is not. Fatigue is like the house-guest that just won’t go home. Once it moves in, your body is never quite the same. Sleepiness is the result of a bad choice. Fatigue is usually the signal of a severe medical condition. Due to the lack of effective treatment, doctors used to give little attention to a patient’s fatigue. Thankfully, in the last 20 years, that has changed.

We now know that fatigue itself can be a Chronic illness. Chronic Fatigue Syndrome (CFS), or Myalgic Encephalomyelitis (ME) as it is sometimes called, has no single known cause. It has been diagnosed in patients, following a viral illness. In others, it followed a major physical or emotional trauma. And in some, it followed exposure to toxins.

If you are suffering from fatigue, you should talk to your doctor. Discuss ways to possibly reduce the symptoms. Talk to others who have chronic illnesses. You aren’t alone. For some patients, a healthy diet and exercise has proven to be beneficial. So, listen to your body. Rest. Limit alcohol consumption. Drink water. Find an option/s that will work for you. When you live with a Chronic illness, you have enough to juggle every day. Don’t allow fatigue to make the management of your disease more difficult. Learn how to fight back.

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Reference Links:

https://www.medicalnewstoday.com/articles/248002.php

https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

https://www.ncbi.nlm.nih.gov/pubmed/11327394

https://www.ncbi.nlm.nih.gov/pubmed/10887052

https://www.healthline.com/health/food-nutrition/foods-that-beat-fatigue#fruitsand-vegetables

http://www.jpsmjournal.com/article/S0885-3924(08)00560-5/abstract

Is It Hope Or Optimism?

Is it hope or optimism? Ponder that, for a moment. The deeply devout seem to prefer the usage of the word hope. The religiously skittish seem to prefer the term optimism. Others, like myself, see no real difference between the two. It really boils down to one’s preference. Perhaps, hope resonates more than optimism for some? For others, it’s just the opposite. But, by definition, there is little difference. If you doubt me, pick up a dictionary. If the similarities still aren’t sinking in, then open a Thesaurus. For this, I turned to Merriam Webster’s online: “Words Related to optimism – brightness, cheerfulness, perkiness, sunniness, hope, hopefulness, rosiness, idealism, meliorism”. The words, hope and optimism, are like twins. To some, they appear identical. By definition, maybe, they are fraternal. But there isn’t a lot of differentiation, if there is any at all.

I have said all of this to point out that how we perceive things, bad or good, has an influence on our future and our health. Optimism or hope, whichever you prefer to use, plays a significant role in how you live your daily life. It plays an even greater role in how you manage your Chronic illness. I know it has played a significant one, in how I have managed mine. Optimism is healthy. It’s positive. Hope is, too. Both are like sunlight, piercing through the dreary clouds of life. They promise good things to every garden.

When many people are diagnosed with a Chronic illness, their reaction is denial. Deep down, they know that they aren’t feeling well. Something is wrong. But sick and chronically ill are two very different animals. Some patients, if not all, are overwhelmed by the diagnosis. I know that I was, every time. If you are juggling multiple Chronic illnesses, you know what I mean. A part of you is too numb to react. Another part is angry and screaming, whether the words are ever actually heard aloud or not. Again? Why me? And another part of you is crying — sobbing uncontrollably. It’s hard, but it’s not impossible. Optimism is like that warm blanket that  makes you feel better. It comforts and encourages. It’s that loving hug that we can all use, every now and then. Sheer strength seems to come from it.

As I embraced being an advocate, accepting that call, I prayed a lot. And I thought about every little thing — including the title of this blog. Was it optimism or hope? Did it really matter? From the perception standpoint, it did. To be more inclusive, it seemed that I had to step back to avoid sounding preachy. Then, I stumbled upon this quote,

                               “Optimism is the faith that leads to achievement.”
                                                             — Helen Keller

That says it all; doesn’t it? Think of what Ms. Keller achieved, despite her physical impediments. Think of the era that she accomplished these things in. It was phenomenal, to say the least. All of us, no matter our afflictions, aspire to achieve a good life … a happy one … one that is as fulfilling as possible. We want to love and to share. We want to make the most of every day, manage our health issues and LIVE! If optimism allows us to do so, then optimism it is. And if faith is guiding that optimism, so be it. I have no problem with that. My faith has sustained me, for decades. But faith is also a very personal journey.

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As we greet the New Year, let us all take a moment to assess our lives. Count our blessings. Consider the positive changes that we can make, in 2018. Let go of the negative things, in our lives. Let this advice from Romans 12:9 (NIV) guide you into a better, happier year ahead: “Cling to what is good.”  And to each of you … Happy New Year!

Reference Links:

Chemotherapy: One Family’s Choices

With Thanksgiving less than a week away and the holiday season officially kicking-in, many of us find ourselves thinking of our families. We look forward to seeing those who travel the miles, just to savor a few days with each other. We remember the loved ones who have passed on. We may even cringe at who shows up, unexpectedly. Still, we manage a smile … set an extra plate … and wallow in a treasure that is uniquely ours — our family. Afterwards, we may play football in the backyard … watch a game on tv … take a snooze on the couch … even sift through old photo albums. We talk. We laugh. We reflect upon the good times, past and present. The one thing we rarely do — if ever — is discuss the tough choices. But for those who may be facing that discussion, in the coming days, I want to reflect upon one family’s choices.

My father was diagnosed in August of 1989 with stage 4 Lung Cancer. Sooner or later, everyone in his family seemed to battle it. So, there wasn’t much of a shock factor. He had been previously diagnosed with Cancer of the Larynx, 15 years earlier, and undergone successful surgery. But this was not that. Dad was now 76 years of age. Still, he was fortunate — no pre-existing health problems. We were dealing with Cancer alone. One tumor, the size of a baseball, had grown out of the lower lobe of his lung and wrapped around his heart. Thus, it was inoperable. The other 4 tumors, ranging from the size of a golf ball to a dime, really didn’t enter into the equation except to prove  metastasis. He was terminally ill and the clock was ticking. My mother and I were like a pair of scared cats, in a room full of rocking-chairs. If Dad was, he certainly never let on. Without a bit of hesitation, he informed his doctors that he would not take chemotherapy. He had watched his older brother, Val, suffer horribly through the treatments back in the 1960s. He wanted no part of it. They suggested a little radiation therapy. He agreed to a few. Dad chose, with passionate dedication, to have Quality of Life. The doctors nodded and privately told us to get everything in order. At most, they said, he had 2 months.

By the grace of God, Dad lived for 10 months. With the exception of a few days that he battled pneumonia in the hospital, he did not take daily medication. He didn’t need oxygen. He lost less than 20 pounds. He ate whatever he wanted, whenever he wanted. He continued to live his life as he had been doing. Whether it was a trip to the mall for lunch at Frank N Steins, or going to church, or just watching a ballgame, it was pretty much the usual routine. While I was his designated caregiver, I was seldom needed. Unless, of course, he had an urge for a batch of homemade cookies. Then, I came in handy. Sometimes, those urges hit a couple of times a week. Despite appearances, Mom and I heeded the advice that his doctors had initially given us. But Dad, like the Sinatra song he was so fond of, did it his way. He passed on May 4, 1990, just after midnight. When the end came, it came swiftly — more like a heart attack than Cancer. He had been in the hospital, for less than an hour.                                                                                                                                          100_2425

My mother’s family was, health-wise, the opposite of my father’s. Cancer was and still is a rarity, among them. So when my mother suddenly had back pain, in late February of 2008, no one was thinking of the “Big C”. That included her, despite a lengthy career in healthcare. Even more unusual, Mom started every new year with a complete physical. She had just passed one, with flying colours. Yet, there it was on the x-ray. A tumor. It was approximately the size of a grape. Further tests revealed that it had not spread. Still, we were dealing with a rare and aggressive form of Cancer. Mom had Non-Hodgkin’s Lymphoma Primary to the Bone. The tumor, located on her T-4 vertebrae was causing the pressure & pain in her lower back. Her oncologist suggested aggressive treatment, despite Mom’s age (72). She was, after all, the picture of health with no pre-existing health conditions. She hadn’t even retired. And Mom agreed to chemotherapy as well as radiation. She always loved a good fight. No battle was too big, or too intimidating. But Mom had never been a patient. In many ways, she didn’t seem to know how to be one. What followed was a 9-week roller-coaster ride of highs and lows.

She was never nauseated, by chemo. In fact, she regularly dined on Chick-fil-A and milkshakes with the IV in her arm. No vomiting. No hair loss. Instead, Mom suffered every unusual setback feasible. She was in the hospital as much as she was at home. As her caregiver, I charted her numerous medications (20) … made her meals … helped her bathe and dress … handled financial matters, etc. It was daunting. On April 31st, a blood clot hit my mother’s lung. It’s a rare complication. Still, it happens. How and why seem to remain a subject of debate. Within a week, Mom developed ARDS (Acute Respiratory Distress Syndrome). The oxygen and morphine did little, at that point. She was slipping away, before our eyes. And we knew it. We could see it. Mom passed on May 10, 2008. It was Mother’s Day weekend.

In March of 2010, with my 50th birthday upon me, I was drafting a Bucket List. Silly, I guess. But I’ve always been a planner. What I didn’t plan on was the flu-like symptoms that hit me, i.e. aching all over, low-grade fever, lethargic. A few days later, my joints swelled. Suddenly, I couldn’t lift my arms. Nor could I open and close my hands. I couldn’t even wiggle my fingers. Clearly, this wasn’t influenza. Unlike my parents, my health had been problematic since I was 13. I was already juggling two chronic illnesses. This was about to be my third. Bloodwork confirmed that I had Rheumatoid Arthritis. And I was facing a familiar decision — chemotherapy.

As I sat in the Exam Room, I thought about my parents and the choices that they had made. Then, I tried to wrap my head around chemotherapy being used to treat something other than cancer. I had never even heard of it. But, like my Dad, I wanted Quality of Life. The irony, here … to achieve that, with RA, chemotherapy was the gold-standard. Because of my mother’s experience, my doctor suggested oral route Methotrexate. Once a week, I took a handful of pills. As harmless as that may sound, the result was a constant test of my physical and mental tenacity. The first eight weeks were the worst. Repeated bouts of nausea. Vomiting. At times, it took both my husband and son to hold me up. I was as weak and fragile as a rag-doll.

I lived on Sprite, apple juice and saltines. Some days, I was literally too weak to hold my head up. For every week thereafter, I gave up one day to the throes of treatment and a second to fatigue. My hair became thin — almost baby-fine in texture. I lost some of my eyebrows. And I lost 20 pounds. Still, I pressed on. I fought. Eventually, with added medications, the symptoms lessened. It became manageable. I simply had a 5-day week, when the rest of the world had seven. Occasionally, a treatment would sucker-punch me. And I felt as though I was starting all over again. Week after week. Month after month. Year after year. It was a self-induced hell. A choice. Mine. One that I endured for 5 years and 8 months. One that, even today, I pray was successful (in the long-term). Only time will tell.

As you gather with your families, in the weeks ahead, consider all that you share. Think of the choices that you have made in life. And then, think of theirs. Try, for a moment, to walk in each other’s shoes. One day, you may find that you have to. God bless.

 

Reference links:

http://www.chemotherapy.com/new_to_chemo/what_is_chemo/

https://www.webmd.com/arthritis/chemotherapy-drugs#1

https://www.healthline.com/health-news/how-chemotherapy-helps-fight-lupus-and-other-autoimmune-diseases-101915

https://www.stoptheclot.org/faq_blood_clots_cancer.htm

https://www.cdc.gov/hrqol/concept.htm

 

 

The Fragile Blooms: Teens & Chronic Illness

Every Spring, gardeners and farmers hold their breath … hoping … praying … that a freeze doesn’t come their way. Mother Nature blindsided South Carolina’s peach growers, in 2017 — about 90% of the crop was destroyed. I remember that blast of frigid air. Aside from the effects it had on me, physically, I stood at my window … looking at my beautiful, ruby-red azaleas … and I felt utterly helpless. I knew they were vulnerable. It was just a question of how bad the damage would be. In the wake of that freeze, my azaleas looked burned. Shriveled. Brown. It was heart-breaking. Still, the bushes had survived. So, all was not lost.  Children, especially teens, who live with Chronic illnesses are vulnerable too. They are the fragile blooms of the garden … trying to grow and thrive … struggling with an illness that creates additional problems in an already challenging phase of life.

I was diagnosed with my first Chronic illness, at the age of 13, by doctors at Le Bonheur Children’s Hospital in Memphis, TN. During a time when I just wanted to make friends and fit in, I had to hear that I didn’t fit in at all. At least, that’s what the diagnosis felt like and sounded like to me. How many teens do you know with a Chronic illness? I didn’t know one. Suddenly, I had to remember to take my medications every day. I had to go to bed at 10 o’clock, every evening. If I got to watch SNL, on a Saturday night, I felt like I had partied hard. Activities that I once enjoyed were now closely monitored. I was an only child. My parents, God bless them, had lost twins nearly a decade before I came along. In other words, my diagnosis made my mother over-protective to a fault. Poor Dad was stuck in the middle — trying to maintain some balance. Every teen probably thinks, at some point, that their life is Hell. I was convinced that my life was Hell and even the Devil wanted no part of it!

When I reflect back on those years, I remember the usual angst of being a teenager. And I remember the frustrations of living with an illness that I didn’t want, or ask for. I remember a straight-A student becoming a B-student, no matter how much studying was involved. I was actually held back, in Eighth grade, because I had been hospitalized for more days than the state allowed a student to miss during one school-year. It seemed brutally unfair. In a way, it was. Boys were skittish. Dating is one thing. Dating a girl with a health issue was akin to a death-wish. Girls who I thought were my friends alienated me. A few cruel tricks were even played on me. The guilty know who they are. And I hope, for their sake, they have atoned since. Instead of punishing them, I was told by my school and society to toughen-up. Endure the illness. Endure the pain. Endure the pranks. Swallow the setbacks. Basically, I learned perseverance the hard way. If it were not for my faith, the love of my parents and a few sweet friends, I do not know if I’d be here.

Chronically-ill teens today are walking the same difficult path that I did, over four decades ago. Unfortunately, some things never change. Statistics tell us that their Chronic illness makes them even more vulnerable than their peers. They are three times more likely to commit suicide than a healthy teen. Depression is an obvious factor.  Many are prone to high-risk behaviors, i.e. sexual activity, substance abuse and delinquent behavior. Others face developmental difficulties that detract from their academic readiness. Some are the targets of bullying.

As a happy and tenacious adult, I want to plant a few seeds of advice. To any child or teen who is living with Chronic illness, you CAN do this! Your life IS worthwhile! God doesn’t make junk. He never has. Society and the environment can decay His work, but you are wonderful just the way you are. Never lose sight of that. Those who cannot see it, male or female, are not worth your time or your tears. Set goals, despite your illness. Tomorrows, like gardens, need planning and nurturing to grow. Take care of your health. Take your medications, as directed. Make smart choices. Rest. Love yourself. You’ll never truly be able to love another, until you do. Last, but not least, start noticing others. It’s sort of therapeutic and allows you to keep a positive perspective. Everybody HAS an issue of some kind. Your Chronic illness doesn’t make you an oddity. You are one of millions. Life has handed you a lemon, at a young age. Show the world what you can do with it — make lemonade (Matthew 5:16)!

For parents, be patient … understanding … and encouraging. Protectiveness does have its limits. Your teen, despite their illness, needs to live — not exist. Help them achieve that. Keep the lines of communication open. I had to actually become a parent to have an inkling of what my diagnosis must have been like, for my own parents. Now, I understand the over-protectiveness that my mother wielded like a sword. I marvel at how well they did, with me. There is no easy way to raise a child. Each brings joy and sorrow. Keep that in mind. None arrive with instruction manuals. Focus on your child and his/her needs — not what your BFF is doing with theirs. Your child didn’t ask for a Chronic illness. You didn’t wish it for them. But, together, you can overcome every challenge that it brings. And the harvest that you reap will make it all worthwhile!

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Reference Links:

https://www.sciencedaily.com/releases/2017/08/170817110905.htm

https://www.ncbi.nlm.nih.gov/pubmed/10869964

http://pediatrics.aappublications.org/content/early/2016/04/11/peds.2015-2475

 

The Reflection Pool: 9/11

Every garden seems to have a reflection pool or place. So it seems only fitting on this September 11, 2017, that the Garden of Optimism has one too. If you were alive in 2001 and not wearing a diaper, then you can probably recall that day vividly. It was a gorgeous, September day. The sky was a pristine blue. The sun was shining brightly. And, in an instant, the unthinkable happened.

When we mourn those who died in the attacks 16 years ago, let’s also take a moment to remember the casualties that have rippled from that tragic day. The victims, many of whom were First Responders at Ground Zero, developed chronic illnesses as a result of exposure to the toxic air and contaminants at the site. The North Tower alone was believed to contain as much as 400 tons of asbestos. But there was also the release of lead, mercury, organic elements, etc. It took a devastating toll on the health — the overall lives — of thousands.

Approximately 50,000 people have been diagnosed with illnesses believed to have been caused as a result of the 9/11 attacks. Over 1,100 have died. When you add those numbers to that of the victims lost on that dreadful day (2,977), you realize just how deadly 9/11 was. Unlike the image a Day of Remembrance suggests, the attack is ongoing. We are still losing lives. We are still suffering. We are literally diagnosing additional victims, every day.

To the families who lost loved ones on 9/11, to the families of First Responders who were lost as a result of WTC illnesses, to all of those still struggling and those who live in a silent fear for their health, may God bless each and every one of you. America still remembers the pain, tragedy and courage of that day. Our hearts and prayers are with you.

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Reference links:

https://www.cdc.gov/wtc/coveredcancers.html

http://www.nejm.org/doi/full/10.1056/NEJMp068287#t=article

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4686342/

http://www.newsweek.com/2016/09/16/9-11-death-toll-rising-496214.html

http://www.cnn.com/2013/07/27/us/september-11-anniversary-fast-facts/index.html

https://www.newscientist.com/article/2105581-deaths-from-911-related-illness-are-set-to-exceed-initial-toll/

 

The Garden of Optimism: What is this place?

Did you ever find yourself in an awkward moment? Wondering how life managed to lead, or drag, you down a certain path? Well, such is my case. When we find ourselves in a predicament, we usually know how we got there. But sometimes we aren’t too eager to admit it. Still, there are times when life leads us into the middle of what appears to be uncharted territory. Our reaction depends upon the circumstances, our perception of them and our willingness to take on the challenge. For me, personally, I am humbled and flabbergasted.

Throughout my entire life, I have always felt a strong sense of service — volunteering with various organizations, my church and within the community. But no one would have predicted that I’d become a blogger — including me. I’m not the most tech savvy person on Earth. I freely admit that. Still, God did provide me with a gift for words. One that I’m abundantly grateful for, even though I haven’t used it in a few years. And He molded me with a very tenacious spirit. So, why now? Why bother? In all honesty, I have felt a calling. Divine, as from the Lord, but not in the pastoral sense. Persistent. Urging me. Whispering to my conscience. Telling me, of all people, that I need to reach out and do this (Matthew 5:16 NIV). I need to serve (1 Peter 4:10 NIV) others. I need to become their voice. So, here I am — a Patient Advocate.

I’m not a medical professional, though I’ve seen more than my share of them. I hold no degree in Divinity. My credentials are from personal experience. And, unfortunately, this is subject-matter that I know all too well. I have lived it, for decades.

By now, if you’re still with me, you may be wondering where all of this is going. Patience, Sweet pea. I’m a Southern gal. We sometimes ramble like ivy on an arbor, but we eventually get to the point …

Mine is that our lives are like gardens. For a moment, consider that metaphor. There are beautiful, bountiful years. And there are meager harvests. There are all the usual things that make growing difficult. The rocks & lousy soil, of the daily grind. Too much heat, or stress, is harsh on a garden. Too much rain, falling in the form of drops or tears, washes away our plants … our plans … our dreams … even our deepest desires. Then, there are the things that come when we least suspect. The ones that we never wanted. The ones that, we so often told ourselves, only happened to other people. And our gardens are never the same …

This blog is a place of refuge and support. It is devoted to those who are living with chronic illnesses and their loved ones. I understand what you are feeling. Your garden and mine are one in the same. This is about accepting that no garden is perfect, but all have beauty and purpose. It’s about realizing the potential of your garden — finding it. This is about living, each and every day to the fullest in His light (1 John 1:5 NIV). It’s about enjoying the sun on our face and the blooms that we find. It’s about allowing our bodies and souls to dance. Yes, dance — even in the rain. Come … sit a spell (as we say down South) … browse the pages of this site (there’s more than one). Let’s talk. You aren’t alone.

 

Blessings,

Julia

 

 

 

 

 

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!