Exercise and RA: Part Four

By Marianna Boyce

active-adult-athlete-body-416778I’m sure we can all agree exercise benefits us all—regardless of gender, age, and fitness levels. There are many options to choose from, but not every workout suits every need. The key is to keep looking until you find which one works best for you.

 

In the beginning, I used rheumatoid arthritis as an excuse not to exercise, but quickly found anything water-related was a soothing option for my aching joints. For that very reason, I joined a gym and participated only in their water fitness classes. After about a month, this particular activity enabled me to build strength and endurance, ultimately giving me the confidence I needed to search for more options.

 

Since I preferred group classes, I looked for some I could do without creating painful regrets. There’s a difference between RA pain and exercise pain. I can handle the exercise pain alone, but paired with RA, it’s a frightening thought.

 

To follow is a list of some of the choices I’ve made so far. I certainly plan to add to the list as I become stronger, but for now, I’m challenging myself. It’s a balancing act, but the motivation is quite simple—feeling better while improving my mobility.

 

Aqua-Fit/Aqua-Tone/Aqua-Zumba

Each of these fun-filled workouts is for people of all ages and fitness levels.

 

I reaped many benefits from these non-impact underwater exercises performed in a temperature-controlled pool.

 

The instructor guides each step of the way, and most importantly, if you mess up, no one cares. As long as you keep moving, you’re doing it right.

 

I like to say, “What goes on under the water stays under the water.”

 

There’s no judgement and no rules.

 

Okay, there’s only one rule—no drowning allowed, and since your face is never submerged, it’s an easy rule to follow.

 

As I gained momentum in the areas of flexibility, strength, and mobility, I mustered up enough courage to try a Yoga Restore class.

 

Yoga Restore

This relaxing hour is also encouraged for all ages and fitness levels.

 

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It uses breathing, stretching, and restorative postures to assist in feeling refreshed and renewed. With the lights dimmed, the intimidating factor most people feel when starting out makes it easier to attend. It’s a great way to treat your body to a calm, relaxing workout.

 

There’s no judgement and no rules.

 

Okay, there’s only one rule—just do you. Since you know your body better than anyone, it’s an easy rule to follow. The instructor never pushes beyond your limit. If you can’t hold a particular stretch or pose, do one you can.

 

RPM (Indoor Cycling/Spin Class)

This class is for all ages and fitness levels.

 

athlete-bike-black-and-white-cycle-260409RPM is a calorie-burning workout on stationary bicycles where you ride with the instruction of an enthusiastic coach. An instructor will guide you through various terrains—including hills, flats, and mountaintops.

 

In this class, there’s no judgement and no rules.

 

Okay, there’s only one rule—just have fun. It’s not a competition. The instructors constantly encourage members to listen to their bodies.

 

This high energy class is great, but I always take it much easier than everyone else. My knees and ankles don’t allow for the intensity many others exert—and I’m okay with that.

 

Barre

Wow—I love this class. It’s incredibly challenging, but miraculously doable—even for those with joint-related issues such as RA.

 

It’s a low-impact, high-energy program that integrates principles of yoga, Pilates, and strength training all in one class. The instructor focuses on slow, full-range movements combined with high repetition and isometric contractions. It increases strength, endurance, and bone density. It also improves posture, functional movement, and engages every muscle in the body through each pose and exercise.

 

Did I mention, there’s no judgement and no rules?

 

Okay, there’s just one rule—challenge yourself, but only within your physical limitations. The instructor will give modifications to any exercise if necessary.

 

Is it easy? Absolutely not. Has it been well worth the extra time, effort, and money? More than you’ll ever know. Until September of last year, I’d completely forgotten how good exercise felt. These activities changed the trajectory of my health and wellness goals.

 

Trust me! There’s still much to do, but the benchmark I recently set for myself was to simply feel better without focusing on a number on the scale. I’ve met that goal—so what’s next?

 

If you’ve ever entertained the idea of joining a gym, I encourage those of all ages and fitness levels to take that plunge if at all possible. Not all have a pool, so if you’re searching for water-fitness in particular, MUV fitness is a good option. If you don’t necessarily need a pool, I definitely recommend any reputable gym that’s convenient and affordable.

 

The reasoning is simple, and has nothing to do with vanity, but everything to do with mobility.

 

I’m not 100% pain-free, and may never be, but I haven’t felt better in years. Exercise is helping in ways I never thought possible—mentally and physically. It’s something I never thought about until it was snatched away, but I can honestly say I no longer take it for granted. The power of movement and mobility—it truly does matter.

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I’ve not been paid or given any services from MUV Fitness.

 

Exercise and RA: Part Three

By Marianna Boyce

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After the onset of perplexing RA symptoms in 2016, it’s taken me more than three years to pull myself together—especially in the area of health and wellness. The counterintuitive aspect of combining exercise with rheumatoid arthritis seemed ludicrous, but I’ve been desperate to feel like my old self again. I know exercise is an important factor. I’m not getting any younger, so it’s high time to get started. No more quitting.

Everyone’s probably heard the definition of insanity—the one where you do the same thing over and over again while expecting different results? Yeah—that’s the one. I was driving myself crazy trying to figure out what I was doing wrong.

It was clear what kept me in tip-top shape in my thirties and forties wasn’t clicking in my fifties. I had entered a new season of life—and wasn’t happy about it.

This change was inevitable, and throwing RA in the mix was much like throwing gasoline on a fire.

In a nutshell, I just missed me. It was evident I needed a different approach, so I got back to basics—start slow and do what you can.

Initially, I resorted back to my home workout videos, but they weren’t as easy as they used to be. I was desperate for outward results but didn’t realize at the time that I needed to work on things other than vanity.

Wanting to lose twenty pounds, I started making better food choices, but also took the plunge and began working out in my sister’s pool last summer. It was then, something strange happened. After a few sessions in the privacy of Cindy’s backyard, I felt incredible—and hadn’t even lost one pound.

Disappointing? Maybe at first, but as time passed, I made a conscious effort to stop fretting about the number on the scale and concentrate solely on the inner me instead.

When summertime came to a close, Cindy covered her pool for the fall and winter months. We decided to join a local fitness center with an indoor pool as we waited out the colder weather.

In all honesty, we weren’t thrilled with the idea of shaking up our daily routine by going to the gym throughout the week, but it’s something we had to do. It sounds like a zany idea for two women in their fifties to be joining aquatic activities in a public pool—yet there we were, along with other people of all ages, shapes, and sizes.

We both loved it immediately.

After the first few sessions, one of the instructors asked if we’d tried classes other than the pool-related ones.

At that time, Cindy and I were on an incredible exercise high, but our instructor knocked us right back down to earth when she asked us about trying other classes.

My thoughts were, “We’re just here for the pool, lady—nothing else. We’ve found our new comfort zone, and we’re happy about it, so there’s no need to push the issue.

This intuitive instructor wasn’t convinced. She thought we could do more. This sweet lady suggested we try a Yoga-Restore class offered upstairs in their main studio.

I told her about a few yoga videos I enjoyed at home (pre-RA,) but they were currently more advanced than my physical capabilities allowed.

She explained this particular class was more concentrated on breathing, stretching, and relaxing. The more she talked it up, the more Yoga-Restore intrigued us. balance-body-exercise-female-374101

Breathing is a necessity; stretching leads to mobility, and relaxing is a luxury.

Sign us up. When’s the next class?

Little did we know how amazing we’d feel the day after yoga.

If you suffer from RA, fibromyalgia, osteoarthritis, etc., you know that mornings are the worst. The pain and stiffness after waking up are debilitating, but after the first yoga session, our mornings were much more tolerable—not 100% pain-free, but definitely a considerable difference than before.

Branching out to take that one additional class prompted us to seek more possibilities, but we agreed the pool would be a constant. Our new yoga class was also a keeper, but we now looked at the gym in an entirely new way. It appeared Cindy and I were much stronger than we initially thought.

Our options are limitless, but our health issues sometimes keep us grounded. There’s always a fine line to tread, but as a team, we have each other’s back as we both make progress.

How can we push ourselves without going overboard? What else can we possibly do? Just about anything we put our minds to.

Exercise and RA: Part Two

By Marianna Boyce

Exercise and RA part IIIf you read my last post, you’ll recall my sister and I claimed her swimming pool as our gym last summer. Cindy and I both suffer from chronic illnesses that affect mobility; she suffers from fibromyalgia and osteoarthritis, while I endure dreadful symptoms of rheumatoid arthritis.

 

What started as “Saturday only” water workouts quickly evolved into something much bigger. We upped our game as we squeezed in two additional workouts during the week. Being in the water made it easier for us to move.

 

The weekday shakeup in my rigid routine was inconvenient but well worth it. The hardest part about changing the workout schedule was getting there after a long day at work, but once we were in the pool, we were unstoppable. Swimming made an empowering difference in the way we felt.

 

Cindy and I were definitely on to something—that is until the leaves started changing their colors.

 

When she covered the pool for the fall and winter months, I had the mully-grubs. My body needed the pool, so I began searching for venues that offered aquatic fitness classes in a temperature-controlled setting. We needed a heated pool in a clean, safe environment.

 

Of all the options available, a local gym in the heart of town caught my eye.

 

Now, the question was, “Do I actually want to join a gym?” 

 

Having a membership definitely has its perks, but it costs money, time, and commitment—things I wasn’t sure I had. Certainly, no one dealing with a beast like RA joins a fitness center. The idea seemed counterintuitive, so I immediately started talking myself out of it.

 

First and foremost, what does a fifty-one-year-old, pain-filled, peri-menopausal woman do at a sports club?

 

Secondly, I couldn’t afford to join, but then figured I couldn’t afford not to. 

 

Thirdly, I thought the gym was for “perfect” people. I’m certainly far from that, but it was high time my health and wellness finally took precedence.

 

To satisfy my curiosity, I needed to visit the gym. Since I had no earthly idea what to expect, slipping in under the radar was my goal. I finally mustered up the courage to go to the gym, and I actually fell in love! The whole “slipping in under the radar” idea was not an option, which was a good thing.

 

I was initially impressed with the security from the get-go. Once I entered the building, I had to abide by the safety rules in place. It turns out, I couldn’t aimlessly wander much further than the front desk check-in. I’m not sure why I thought I could.

 

Members must show their barcoded pass scanned whenever they enter the building. Since I wasn’t a paying member, I was promptly met with a friendly face as soon as I stepped inside the front door. I probably looked like a deer in headlights, but she immediately made me feel comfortable.

 

Before taking a tour, I had to sign in as a guest. The process was computerized and entailed more than just signing my name on a sheet of paper. Still, this minor inconvenience made me feel secure knowing they had a detailed listing of everyone in the building at any given time. 

 

After signing in, a gym representative gave me a tour. I revealed my medical setbacks, and the representative assured me that many people join the gym for similar reasons. Not everyone who goes to the gym is young, fit, and fabulous.

 

As I looked around, there were people of all ages and sizes scattered throughout various areas of the gym. Some people were in great shape, and others were working on their goals, like me. The reality of large fitness gyms differed completely from my preconceptions.

 

I was quite comfortable with the representation of everyday people. Although we were extremely different from one another, we were also very much the same. We all just wanted to feel better. Exercise does that for everyone—healthy and unhealthy alike.

 

I left the gym with a fourteen-day free pass to use in whatever way I chose, but my interest was with their indoor pool only. Water exercise was the only thing I was confident I could do, but with fourteen free consecutive days, it would certainly help in my decision-making process.

 

Whether at home or a gym, movement makes a world of difference. I wasn’t ready to forfeit my mobility over to RA. As stated in my last post, I have RA—RA doesn’t have me.

 

I could hardly wait to tell Cindy about my visit. She had a fourteen-day free pass waiting for her as well. I hoped she’d love it because I’d already made up my mind—I was not doing this gym thing alone!

Exercise and RA part II image 2

Exercise and RA: Part One

By Marianna Boyce

Rheumatoid arthritis is a chronic, progressive disease where the immune system mistakenly attacks healthy cells and tissue surrounding the joints. It sees these healthy cells as foreign invaders, ultimately causing painful immobility and deformity if left untreated.

Symptoms of RA darkened my doorstep the summer of 2016, and honestly speaking, it’s been one of the best excuses I’ve had to avoid physical activity for the past few years. Don’t get me wrong. RA is a great excuse, but my itty-bitty pity-party was getting a little ridiculous.

I have RA—RA doesn’t have me.

Still trying to regain what’s considered normal for me (pre-RA,) I wondered if reviving my exercise routine was even possible without creating more problems for myself. I was scared of raw, unbridled RA pain, so I was skeptical. If you’re struggling with any type of arthritis or mobility issue, I’m with you. The thought of physical activity is daunting, but new light has recently started to change my mind on the subject.

woman-girl-silhouette-jogger-40751 (1)

According to Google, “motion is lotion” is a phrase coined by an orthopedic surgeon. He stated that movement would increase the lubricating fluid (synovial fluid) transporting nutrients to the joints. This fluid is vital in keeping them healthy. I’ve never been to an orthopedist before, but my rheumatologist would agree that movement is essential to maintaining independence and mobility for those suffering from chronic pain.

I know—it’s much easier said than done. My sister Cindy suffers from fibromyalgia and osteoarthritis, so together, we’re either a force to be reckoned with or a hot mess.

Cindy and I are extremely close. I’m usually at her house every Saturday afternoon for much-needed sister time— especially in the summertime.

After lounging around her pool on a hot South Carolina day this past summer, we laughed and joked with each other about how out of shape we were. Sisters can do this—and we did so as we mindlessly consumed unhealthy poolside snacks and sugary drinks. We had an epiphany that very day. Our itty-bitty pity-party had to officially end—no more excuses.

It was time to get moving, but not for the reasons many people may think. Our reasons go much deeper than physical appeal. We just want to feel better.

We started researching the benefits of Water Exercise and Aqua Aerobics. What we found was quite encouraging, and at first glance, exactly what we needed.

  • Water supports the body, reducing stress on joints and muscles.
  • It helps build strength and endurance.
  • Water pressure helps lessen the strain on the heart as it assists in moving blood around the body.
  • It provides for a low impact, high-energy workout.
  • Water allows for a greater range of motion with the freedom to move with little to no pain.
  • It helps prevent overheating allowing for a longer workout.
  • It’s fun! (How many people can say that about their exercise routine?)

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The more Cindy and I read about it, the more our interest was piqued, so the following Saturday, we found some YouTube videos and had a different kind of pool party.

The following day, we felt the workout “burn,” but it also felt fantastic. If water makes it easier to exercise, count us in, but what would we do when she closed her pool for the fall and winter months? This is where the courage to try something new came into play. For two moody women in their fifties, change isn’t always easy, but we made the collaborative decision to end our itty-bitty pity-party once and for all. It’s that decision that will potentially change our lives.

We’re a work in progress, but the struggle makes us stronger. The struggle, my friend, is part of everyone’s story. No one is exempt. We’re all in this together. What’s your story? Would this type of workout suit you?

Be on the lookout for Part Two of my “Exercise and RA” post coming soon.

**Please consult your doctor before starting an exercise regimen.**

Every Story Counts

By Rachel Sircy

online-marketing-hIgeoQjS_iE-unsplashI know that I’ve written many times about how celiac disease affected me before I was diagnosed. The symptoms were all over the place, and no doctor seemed to be able to put the clues together to come up with what was wrong with me. I experienced no digestive issues for most of my life. The symptoms were mostly things like forgetfulness, inability to concentrate, joint pain, and debilitating fatigue. I developed stomach and intestinal issues during my late high school and early college years. It was only after the gastric symptoms – the bloating, the reflux, and the extreme pain I experienced right after eating (which kept me from eating more than about a cup of any given food at once) – became unbearable that a gastroenterologist looked at me and said, “I think I know what’s wrong with you.” Only people who have waited years for a diagnosis know what a blessing it is to finally hear those words.

I don’t know exactly how my mother felt all those years that she looked at me, knowing something was wrong, but not knowing what it could be. Of course, my mother turned out to be a celiac herself. I think there was always a kinship between my mom and me because we were both sick with something we couldn’t name and that, in fact, we weren’t always sure was real. I remember one time, in particular, telling her that I didn’t feel well. She asked me what I meant, and when I told her that I didn’t know, I just felt bad, she shook her head knowingly. It was as if we both understood that we didn’t have the language to talk about the ways we could feel our bodies failing us sometimes. She always believed that the sickness that she felt was the same sickness that I felt, and she was right about that.

She was wrong about what the sickness was, though. She’d been told all her adult life that all of her health problems stemmed from low iron levels. No doctor could tell her why she was anemic. Doctors have a word for when they’ve thrown up their hands and can’t figure something out, it’s idiopathic. I recoil from that word every time I hear it or see it written. If a body is malfunctioning, there is always a reason. That’s my opinion anyway. My mother’s anemia turned out to be only a symptom of her illness: celiac disease. The borderline anemia I had experienced from early childhood turned out to have the same cause.

I keep sharing my story because I believe it’s important for people to know what celiac disease can look and feel like. Raising awareness will get more sick people diagnosed. And that is why I found this story from the New York Times Parenting section so compelling. It is the story of actress Casey Wilson and her oldest son, whose depression, lethargy, broken leg, seizure, and apparent autism all turned out to be symptoms of the same underlying problem: celiac disease. The story is both terrifying and hopeful. Casey’s son, then under four years old, was too young to be able to tell his mother that anything was wrong with him, but Casey and her husband kept watching and finally found a doctor who was able to connect the dots and give them those incredible words: “we have a diagnosis.” And though her journey to her son’s diagnosis was something out of a parent’s nightmare, her son has experienced an amazing recovery just by following a gluten-free diet.

If you have a story of diagnosis, for any disease, (particularly one that’s tricky to pin down, like an autoimmune disease) I would encourage you to share it in whatever way you can. You never know who might be listening, watching or reading. Your story may give hope and much-needed information to someone out there who is still struggling with an inexplicable illness.

For those whose lives or loved ones may be affected by celiac disease, there are many outlets for you to find information and to share information, but I would recommend checking out the Celiac Foundation’s website at celiac.org. You can find out information about celiac disease and gluten-free living, sign up to participate in clinical trials (in certain areas of the country), join the iCeliac patient registry, take part in their student ambassador program and even share your story with Congress.

Breast Cancer Awareness Month

By Marianna Boyce

Breast Cancer Awareness is highlighted in October to bring attention to one of the most diagnosed cancers in women. One of every eight women is diagnosed in the United States alone. Chances are, it’s likely you know someone who has fought or is currently fighting this vicious disease. Men can also develop breast cancer, but their odds are much lower. If you or a loved one have been affected, I’m sure your awareness extends well beyond the devoted month of October every year.

The exact cause of breast cancer isn’t known, but one thing is clear: this global issue is non-discriminatory.

ribbon.jpgAccording to the National Breast Cancer Foundation, approximately 41,760 women, and 500 men will die each year in the United States alone; however, this same website reports that death rates have also steadily declined since 1990. Contributing factors to this trend are increased awareness, early detection, better screening, and improving treatment options.

We should be aware of risk factors, along with small steps we can take in order to fight against breast cancer. Some risk factors can be avoided, such as alcohol intake, but other factors like family history cannot be. A monthly self-exam is a step in the right direction to detect issues early.

According to the American Cancer Society, current guidelines for breast cancer screening is as follows:

  • Women ages 40-44 should have the choice to start annual breast cancer screening with mammograms (x-rays of the breast) if they wish to do so.
  • Women ages 45-54 should have a mammogram yearly.
  • Women 55 and older should have a mammogram every two years, or continue yearly screening if they wish.
  • Screening should continue as long as a woman is in good health and is expected to live ten years or longer.

Every woman is unique. You should know how your breasts normally look and feel. Remember that your monthly self-exam is the most powerful tool in early detection. If you feel a lump, or something that doesn’t feel normal, make an appointment with your doctor immediately.

Visit www.nationalbreastcancer.org/breast-self-exam to learn the proper way a self-exam should be performed.

Life is busy—I get it, but something as simple as a buddy system to help remind one another to self-examine each month could potentially save a friend, loved one, or even your own life. Set a recurring reminder on your phone for a time you can take a moment and devote it to your health.

When’s the last time you did your breast exam? Don’t wait ladies. Do it today.

A Sweet Boy Named Wyatt

By Tina Michelle Cameron

wyatt outdoor pictureThis will probably be the hardest blog I have written to date. It is part two of a blog from earlier this month which was about September being Childhood Cancer Awareness Month. You see, I want to tell you about a sweet boy named Wyatt. It is easy to talk about Wyatt; it brings a smile to my face and warms my heart to think about him, but with the smiles, also comes tears. Wyatt Edward Brown was born on October 28th, 2014 to the most amazing parents I have ever met – Ashley and Eric Brown. If you follow my blog or are friends with me on Facebook, then you know that I am a nurse at Lexington Medical Center on the oncology unit. This is where I met Wyatt’s mom, Ashley, as she is also an oncology nurse. Ashley and I became friends while working together which is how I got to know this beautiful little boy.

Sweet Wyatt, as I always affectionately called him, was kind, sweet, funny, smart, and so loveable and loved. He loved superheroes (the Hulk was his favorite), cheering on the Clemson Tigers, playing with his action figures, watching his favorite video, The Hulk vs. Batman, and spending time with his amazing family. He was smart having already learned to read and work an iPad like a grownup at age two.

wyatt and mimi adn gigiWyatt was the strongest and toughest little boy that I had the pleasure of getting to know and love. He would light up a room with his smile and gave the sweetest hugs and kisses. Some of my favorite memories of Wyatt were playing with his toys or just watching cartoons. Another favorite is when they would FaceTime me from Texas or call me during a football game to just say “Go Tigers!” (To mess with me because I am a diehard Crimson Tide fan).

Wyatt was diagnosed at three-months-old with Alveolar Rhabdomyosarcoma, a soft tissue cancer. He had surgery followed by 399 days of chemotherapy and radiation treatments. He went into remission, but then, unfortunately, relapsed – which led to more treatment, radiation, and an extensive surgery at M.D. Anderson in Houston, Texas. Eric and Ashley had to relocate there for three months for his surgery and treatment. This is where they met the incredible Melissa Bellinger who started the A Shelter for Cancer Families organization that provides housing and support to families affected by cancer in the Texas area.

bracelet team wyattAshley and Eric created a Facebook page (TeamWyatt) to keep family and friends updated on Wyatt’s condition. His page has 5,477 followers from all across the world. It is filled with messages of love, support, and prayers showing beautiful pictures of sweet Wyatt and his family. T-shirts, decals, and matching bracelets with the words “No One Fights Alone” were made to show support for Wyatt and his fight. Unfortunately, he passed away on April 28th, 2017.

Just a week after Wyatt passed, and despite their unimaginable loss, his parents held an event to honor Wyatt and raise money for A Shelter for Cancer Families. I was honored to volunteer with the organization and Wyatt’s family, and we raised $10,000 in one evening.

This amazing little boy endured surgeries, chemotherapy, and radiation treatments like a champ. He never complained. Wyatt will never be forgotten and will forever be loved by his beautiful family. Despite his life being so tragically cut short at two and a half years old, his parents and family gave him a lifetime of love and adventures in that short time. I know that he is watching over them and his new little sister Emma Ray Hope from Heaven and will forever be their guardian angel.

family picI will always love Ashley and Eric for allowing me to become an honorary member of their family and the time I spent with sweet Wyatt. Ashley, I love you like a sister, a close friend, and the daughter that I never had. Thank you both for sharing your most precious Wyatt with me and the world. To Wyatt, we will continue to fight for more funding and for a cure. You will always be my superhero.  I will always love you and hold you in my heart forever.

#teamwyattforever #noonefightsalone #superhero #hulk #sweetwyatt #ashelterforcancerfamilies

September is Childhood Cancer Awareness Month

by Tina Michelle Cameron

September is Childhood Cancer Awareness Month. Gold is the color representing childhood cancer. How I wish that neither of these would exist. Cancer shouldn’t exist—for anyone – adults or children. This statement is coming from a woman who worked for 25 years as an adult oncology nurse. I would love to have to find a different field of nursing to work in – this would mean, cancer doesn’t exist. But, unfortunately, this is not the case.

Image 2Many people think childhood cancer is rare. But, each day in the United States, 43 families will hear the words parents should never hear: “your child has cancer.” It is the number one disease killer of children in the U.S. and the second leading cause of death (after accidents) in children ages 5-14. This means that every two minutes a child is diagnosed with cancer. This is an average of 300,000 kids worldwide being diagnosed each year—does this sound rare to you? This is unacceptable. Something must change. We need to demand more for these precious, innocent children.

I have listed the seven most common types of pediatric cancers. Leukemia is the number one cancer in children followed by Rhabdomyosarcoma, Wilms’ Tumor, Neuroblastoma, Lymphoma, Retinoblastoma, and Brain/Spinal Cord Tumors.

According to the Coalition Against Childhood Cancer (CAC2)* in 2014, of the $4.9 billion budget of the National Cancer Institute (NCI), only four percent went to research for childhood cancers. So, exactly how much is 4%– 4% of a dozen donuts is half a donut; 4% of an 8-hour night of sleep is 19.2 minutes and 4% of a $50,000 salary is $2,000.

Image 3Are you shocked? Has your mouth fallen open yet after reading that? Mine too. Were you also aware that since 1980, there have only been 3 new drugs approved for pediatric cancer treatment? In addition, only 4 new drugs approved for both pediatric and adult cancer treatment. These children are receiving adult-strength dosages to treat their cancers. The NCI needs to put childhood cancers as a higher priority as well as pharmaceutical companies. Many adult cancers receive private funding, this is not the case for pediatric cancers.

Parents are terrified of losing their child to this horrible disease, but must also still deal with life—work, other children at home, financial worries, as well as watching their child be sick with nausea/vomiting, pain, diarrhea, mouth sores, hair loss and other side effects from their treatments. Children that survive cancer often face lifelong problems from their treatments. These problems can range from breathing problems and difficulty walking to sight, hearing and heart issues. Many of these children can become traumatized from everything they go through. So, even though the treatments are over, their journey is still not over. They will have the fear of it returning.

Image 1Parents should not worry about losing their job, their home, their car or getting behind on bills because of the financial burden that cancer treatments cost. Many parents must create a GoFundMe page, so they can stay with their child in the hospital or be with them for their lengthy treatments. This should not be. We as a nation need to stand up for these children and do better. We need to ensure more research funding goes to these children. They deserve more than 4%.

*Credit for cancer statistics given to Coalition Against Childhood Cancer and the National Cancer Institute.

Celiac Disease and Children: Some Things to Keep in Mind

By Rachel Sircy

pic 1I’ve been thinking lately about my daughter, who is four, and about whether or not she may also have celiac disease. I’m sure that those of you out there who are celiacs wonder about passing on your gluten intolerant genes to your children. So, for those out there wondering if you should get your children tested for celiac, here are some facts from the Celiac Foundation’s website about children and celiac disease:

* Children with a first degree relative who is a celiac have a 1 in 10 chance of developing celiac disease. So, it’s not a certainty that your child will develop celiac disease if you have it, but they have a higher chance than someone who doesn’t have a close relative (parent, sibling) with celiac.

* Some children start showing signs at different times than others. The jury is still out on why this happens, but some children will begin to show signs of celiac in late infancy or toddler-hood and some don’t develop symptoms until much later in childhood, even into the late teens or early adulthood. What this means is that even if your child is older and has been consuming gluten for most of his or her life, they can still develop celiac disease.

* Children of different ages are more likely to exhibit different symptoms, but there is some overlap in the signs children manifest when they have celiac. Keep an eye on your child if they have a lot of bloating, gas, constipation or foul-smelling diarrhea, chronic fatigue, irritability and especially if they are very young and are vomiting frequently and have poor growth or failure to thrive. Some rarer or more unusual symptoms which can appear in childhood are frequent mouth sores (I still get these!) and that itchy, blistery skin rash known as dermatitis herpeteformis.

pic 2So, apparently severe celiac disease is not common among children anymore, so the symptoms listed above may not be strong enough to be alarming. However, if you know that your child has a higher risk of celiac disease, just be on the look out for those symptoms listed above. And make sure you check out the Celiac Foundation’s website, they have a wealth of information for you to draw from. Remember, children heal from celiac disease much better than adults do. It’s better to get your child tested earlier rather than later because the sooner you can get them on a gluten free diet, the sooner they can heal.

Living with a Chronic Illness

By: Tina Cameron

Not many people know that my two sons and I have a chronic illness that has no cure. It all began when my oldest was 9 years old. He was injured in his karate class (kicked accidentally in the head) by another kid. He was close to having a detached retina, had a black eye, busted blood vessels and spent 8 weeks wearing an eye patch. What we didn’t realize for several weeks was that this kick to his head turned out to be a blessing in disguise. He started having a “clicking” sound when he would move his head up and down or left and right. He thought it was a party trick. Little did we know that it was actually very serious. From his pediatrician’s office we were sent straight to Palmetto Health Richland for STAT CT Scans of his neck and spine. I began getting nervous as they kept coming to get him for more scans. At last, I heard my name being called and looked up and it was the radiologist with my son and tons of CT films in hand. She said Dr. Fred Piehl (pediatric orthopedic surgeon) is waiting for you now. I said, “it is 4:50, they are closing”. She replied, he is keeping the office open for you, you need to go now. I called my mom and my ex-husband and they both met us there.

As we all set in his office, I feared the worst. Corey was in the hallway and he spoke to us first and informed us what his condition was and that it could be life-threatening, and that Corey needed to be aware of it. He was diagnosed with Atlanto-Axial Instability of his Cervical 1 and 2 spine. He could turn, cough, sneeze or get in his head and it cause him to break his neck and with that he could break it and be fine, break it and become a quadriplegic instantly, or break it and it kill him instantly. We went home in shock. Everything changed, from how his bed was positioned, to never being able to play contact sports, diving in my parent’s pool, and his karate career was over. He was also home-bound from school for 9 months. He was 9 hours short of getting his black belt. He what is edsalso taught two classes of karate a week. We were sent to a neurosurgeon and neurologist as well geneticist. After our first visit to the neurologist, he said I think you all have this rare connective tissue disorder called Ehlers-Danlos Syndrome, Type 3. He told me to look it up and then sent us immediately for lab work on another floor in his office building. Shortly after his labs were drawn and we were waiting to leave, Corey grabbed his head and said, “I don’t feel well”. He proceeded to fall out of the chair, had a Grand-Mal Seizure and quit breathing and his heart stopped. I am a nurse and at that moment, I freaked out and was only the mommy. Thank God there were two other nurses there for lab work that revived him. We were on campus of the Children’s Hospital, so we were admitted from the emergency room for the weekend. He was also having incontinence of urine and numbness/tingling in all his extremities. Seizures also go with the Ehlers-Danlos Syndrome (EDS).

Once we had the official diagnosis from the geneticist, I became obsessed with finding everything I could about it. My friends who are physicians had not seen cases in over 20 years. It can affect your heart and affects all your connective tissue in your body, it affects your skin. The type we have, type 3 is now called hEDS (hypermobile Ehlers-Danlos Syndrome). There are now 13 different type of EDS. It is a group of inherited connective tissue disorders caused by abnormalities in the structure, production and/or processing of collagen. So, we have faulty collagen. Collagen supplements do not work for us, because it is our DNA that is screwed up. Basically, the boys and I have easy bruising, easy bleeding, incisions after surgery do not stay closed and we are extremely hypermobile and have soft, stretchy skin. We are prone to multiple dislocations daily, pain all over, bruises that come from something as simple as rolling over in bed. EDSers also have multiple medicine and food allergies and Corey and I do. This condition is hereditary, so unfortunately if my children have kids, there is a 50/50 chance their kids will have it as well. The most serious type is vEDS (vascular EDS)-this is where most people do not live past 35 and they usually die unexpectedly from an aortic dissection. My older son has the most serious case of hEDS out of the three of us and I have it moderately and my youngest just has it mildly.

When Corey was growing up, he began having dislocations from changing his shirt or raising his hand in class, to hip dislocating from walking in the school halls. He went through extensive physical therapy for 3 months and to this day must work out daily. We ended up not having the rod placed in his spine and gradually the numbness and incontinence went away. His instability in his C1 C2 spine has closed some which is wonderful. He learned how to put his shoulder or hip back in place on his own to avoid trips to the ER.

My hip has dislocated once, my shoulder 3-4 times from rolling over in bed when sleeping. I am in constant pain all over almost daily. My knees are bad and slip out at times, so I have braces to wear as needed or when I run. Bruises on my body, stay about 8 weeks where on normal people, just a few days. I even get bruises from fire ant bites.

Both boys have had complete knee reconstructions, at age 16 and age 26. We know we will be facing knee and hip replacements as we age. This condition affects our eyes, our teeth, and pretty much our whole body. Most people with hEDS also have Fibromyalgia, chronic fatigue, migraines, and more.

Knowing that you have a chronic illness with no cure is a hard pill to swallow. However, I try not to let it run my life. I deal with the pain and take Advil with me everywhere. There are days, I hurt so much all over I cannot get off the couch. Many physicians have not ever heard of EDS and many do not believe the patient and think they are hypochondriacs. Family members also doubt us (not mine), but people that I have met in online support groups. We started calling ourselves Zebras because in Med School, thewhy the zebra students are taught to that when you hear hooves, think horses, not Zebras. In medicine, the term Zebra is given to a rare disease or condition. That is how we became known as medical Zebras. Because of the complex nature of our disorder, we are followed by primary care, rheumatologist, geneticist, cardiologist, physical therapist, gastroenterologist, urologists, neurologists and many more specialists as things arise. Some of the friends I have made in my support group are already on disability at 22 and 32 years of age, so I feel blessed that as of right now, my joints have tightened up, I can deal with the pain and that thank God, we do not have the vascular type. I thank God everyday that my boys otherwise are healthy and that Corey’s doing much better and is in great physical shape.

eds scoreSo, the next time you see a contortionist on America’s Got Talent, more than likely, they have Hypermobile Ehlers-Danlos Syndrome. And, if you see someone parked in a handicap space get out and they can walk (just slowly) or is young and, in a wheelchair, —do not judge. Not all disabilities are visible. Because of so many people in the medical field not knowing or even understanding EDS, awareness needs to be widespread globally. Fortunately, May is EDS Awareness month and with numerous online support groups on social media, we are getting the awareness out on what this disorder is. What we need most is for our physicians to believe our symptoms and not dismiss us, or think we are hypochondriacs. There are genetic markers for vEDS, so I am not sure why medical professionals are not believing genetic testing.

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