Brave Girl Battles Two Rare Diseases

Chloe’s Hope: Stop the Burning


What does a juvenile disability look like?  Some might envision a homeschooled child or perhaps a wheelchair user. What if a child outwardly appeared normal yet their insides were screaming in agony?  Try to imagine a child who’s never known a life without horrendous pain and suffering.

That is the case for 11-year-old Chloe Louise Kuschert of Corowa, a town in the New South Wales in Australia. She oftentimes cries to her mother, “Why me? Why can’t I have a normal life? I hate this so much.”  But all her mother can do is comfort her and wipe away the tears streaming down her face.

Chloe was just two years old when her health began rapidly deteriorating. It started with a sensitive area that some people wouldn’t feel comfortable talking about. Debilitating symptoms of bleeding, swelling, redness and pain developed in her vulva (female external genitals) area. As her condition progressed, the burning became so excruciating that Chloe could no longer function. Her life became overshadowed by throbbing pain and discomfort. After visiting numerous doctors over a 4-year period in Australia, doctors were still unable to diagnose Chloe’s condition. The doctors decided to have Chloe’s medical chart reviewed by a pediatric group based out of the United States where a genetic specialist finally made the diagnosis.

Chloe had a rare disease called Erythromelalgia (EM) which not only affects her vulva area, but also her face, ears, and hands.  The condition affects 1.3 in 100,000 people, and there is no cure.

EM causes unbearable burning pain, noticeable redness of the skin, swelling, and increased skin temperature. The exact underlying cause of EM is unknown. It’s thought to result from vasomotor abnormalities or dysfunction in the normal constriction and dilation of the caliber of certain blood vessels, leading to abnormalities of blood flow to the extremities.

There isn’t a typical treatment for EM, and sometimes nothing helps. Chloe has tried many prescriptions and supplements, and dealt with dreadful side effects. She is on a strict ‘cooling’ regime to prevent overheating.


EM flares on Chloe’s face and ears

“Managing her EM pain is incredibly difficult,” said her mother, Jacqui. She  went on to say that every day is a battle in which Chloe fights for her joy and freedom from pain. Since the condition also affects her private area there is no way of knowing the impact it will have on adulthood with sexual activity and childbirth.

Chloe’s health continued to worsen over the next several months after her EM diagnosis. She began experiencing vaginal bleeding, frequent toilet needs, urinary incontinence and burning along with bladder and stomach pain. After seeing several doctors, going through more examinations and cystoscopies, a gynecologist diagnosed Chloe with interstitial cystitis (IC), a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region.


“I felt helpless as I just sat there crying. I wanted to take all of her pain away,” Jacqui said.

Chloe has been repeatedly tested for everything you could possibly imagine and still no doctor can provide answers.


Just a few months following the EM and IC diagnoses, Chloe developed more unbearable symptoms. Her joints began aching and swelling, and she bruised more easily. She had trouble walking due to the pain in her knees and ankles. Ultimately a rheumatologist diagnosed Chloe with Ehlers-Danlos Syndrome (EDS), a group of inherited disorders marked by extremely loose joints, very stretchy skin that bruises easily, and easily damaged blood vessels. EDS affects about 1 in 5,000 people globally.


Most parents couldn’t fathom their child dealing with one rare disease let alone two.  The effects of having all three conditions has caused Chloe to have fainting spells, abdomen pain almost daily, dizziness, and low blood pressure.


“To manage her many combined symptoms Chloe regularly sees a local general practitioner, pediatrician, gynecologist, neurologist, and a cardiologist. Currently she’s taking 11 pills a day plus a pain reliever in an effort to give her a somewhat normal life. Of all her conditions, EM is the most painful for Chloe,” her mother said.

Chloe is in the fifth grade. She battles through the pain most days because she loves attending school. Her teacher is very kind to her, and her classmates are supportive and understanding. She’s sad to miss school days when she’s overwhelmed by pain.


An emotional Chloe as she struggles with daily pain

EM causes the body to quickly overheat during physical activity so Chloe is unable to participate in any outdoor sports. Although it’s disappointing, Chloe maintains a positive attitude. Instead she enjoys reading and doing arts and crafts.

Chloe enjoys spending time with her family — mother, Jacqui, father, David, and brothers, James, 18, and Caleb, 14.  She also loves hanging out with her dog, Molly, and her rabbit, Gizmo.


Chloe with her brothers, James and Caleb

“The unknown is scary. I don’t know if my daughter will ever live a normal life, free from pain and misery. I want her to be happy, and not just have ‘happy moments.’  This is all very devastating.  I also have to accept that she may never experience the gift of pregnancy. I’m heartbroken inside,” her mother said.

Disabilities aren’t always recognizable to the public. So when you see a child who seems carefree and happy, please think of Chloe. There are children out there like her whose lives are a lot harder than they appear to the outside world.


If you’d like to support Chloe Kuschert, you can do so by helping spread awareness.  Please Like and Share her Facebook page titled Chloe’s Hope: Stop the Burning


Chloe and her mother, Jacqui

To see this story on The Huffington Post:

Brave Girl Battles Two Rare Diseases

To read more about Erythromelalgia, please see the following blog:

Burning for Hope

Jacqui and Chloe are active members of the “Parents of Little EM Warriors” program where they communicate and share their experiences with other families in need of support. Join “Erythromelalgia Warriors” on Facebook to learn more.

EM Warriors on Facebook

Chloe has also joined the “I Am The Face of Erythromelalgia” campaign.

Please Join Our Campaign here


EM Awareness Video:

The Wilted Sunflower 🌻


Overlooking a field of sunflowers,

A few appeared out of place.

They tried to stand tall but couldn’t,

While others more lovely filled their space.

Gravitating toward the beautiful ones,

As the wilted were quickly passed by.

Few people desire to view the weak,

And this group of flowers is soon to die.

The wind blew the pedals to the ground,

Changing them from golden to brown.

A little more rain and sunshine is needed,

Especially when ‘living’ is bringing you down.

But aren’t they pretty too, these flowers…

Who looked stranded in a crowded field?

For not every blossom can be flawless,

And there are some that may never be healed.

Healing isn’t the same as ‘fixing’ or a cure, 

But rather to ‘accept’  and mend the soul.

So love ALL the flowers to cross your path,

Even the sad blooms that don’t appear whole.

With a new season a fresh life will begin,

And a new journey will soon be told. 

‘Unique’ is still special and worth seeing,

Because eventually all living things grow old.

Written By: Melissa Curley



Time Waits for Nothing


It’s free yet it’s priceless. You can use it but you can’t borrow it. It can be your friend or your worst enemy.  You have no control over it, and you can’t move it forward or slow it down.   What is it?

It’s called TIME – a simple four-letter-word with such powerful meaning behind it.  “Time = Life.”  Time is the only unpredictable measurement that comes between the moment you’re born, and the moment you take your last breath.  But what is time to you?

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The word “time” creates an image in my mind of an Olympic athlete racing against a clock toward the finish line. Nothing matters more in that moment than time itself; every fraction of a second counts.  Another moment I envision is watching the countdown of the clock during a football game, and the opposing team is down by just a few points.  When you think about it, one could say there is no such thing as losing; they just simply ran out of time. Regardless, “time” is not only about winning or losing.  It goes far deeper than that.

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When the devastating 9/11 terrorist attacks occurred, it made the world question many things, including the meaning of time, and how invaluable it is. Typically, you wouldn’t foresee a national tragedy to have a theme song, but on how many occasions did you hear “Only Time” by Enya playing on the radio during that heartbreaking era?  Employees’ working in either trade tower that were running late that morning thought time wasn’t on their side. On the contrary, time is what saved their lives. Same goes for the passengers who missed their flights that day. Just think if only one person didn’t make it on time to their metro station stop; or if someone stopped to tie a shoelace on the sidewalk; or the coffee shop had an unusually long time that morning.  All of those examples of time could have meant the difference between life and death that day.

Time is everything when a loved one is dying. Imagine a Hospice nurse’s role in helping patients with their end-of-life care. “Time” is what they represent to grieving families. The nurse measures the patient’s pulse beat per minute.  When the time has come, the nurse peacefully says, “I’m so sorry for your loss.”  Just like that, their time on earth is done.  Life in human form is gone forever, and a permanent date and time is marked on a death certificate.

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Just as time can take away a life, it can also represent the spirit of bringing a new life into the world. Most mothers could tell you the exact time their child was born.  After nine months of anticipation, excitement, and curiosity, time is no small thing to a mother.  Many expectant mothers can’t wait for “time” to reveal their baby’s gender before it’s even born.

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The only time one person’s life and another person’s death play a role together, at the same time, is through organ donation. Organ donors make the ultimate sacrifice in saving another person’s life. Matching and compatibility are everything when it comes to saving a life.  Will the recipient receive the organ in time?  Only time will tell.

There are moments when “time” feels like an unattractive word:

  • To a coworker, “I’m sorry you didn’t get the promotion.  It just wasn’t your time.”
  • After a loved one dies, “I’m so sorry for your loss. Time makes things easier.”
  • Once a relationship ends it’s usually accompanied by, “Love takes time to heal.”
  • When a student hasn’t finished taking their exam before the teacher yells, “Time’s up!”
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Just like the old saying goes, “Time flies when you’re having fun,” it can also drag when life sucks. Prisoners and insomniacs probably know this better than anyone.  For insomniacs, it’s unbearable to watch minutes tick by while you’re lying there wide awake.  Waiting on medical results is a time-dragging experience as well.  Also, chronic pain sufferers know how slow time can move. Time may not fix anything but it does teach us how to live with the pain.

Regardless of whether you use it wisely or waste it away, time keeps on ticking.  And we shouldn’t question the days we’re stuck in traffic or got up late for work.  Perhaps there is bigger meaning behind those moments saving us from a misfortune?

No one would be able to recognize good times without having bad ones.  Time is a part of where you are, what you do, and who you’re waiting for.  Until the moment we die, “time” makes us all equal in that we each get twenty-four hour days.  How we choose to spend it is what determines our future.

As Michael Altshuler said, “The bad news is time flies. The good news is you’re the pilot.”

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Brayden’s Story: Braving a Life of Fire

It’s the worst four words any parent could hear when their child is painfully sick: “THERE IS NO CURE.”

Brayden Underhill of Wisconsin was three years old when he had his second clubfoot surgery. Sheena Buffington, Brayden’s mother, noticed odd symptoms following his period of recovery.  Brayden’s feet were unbearably hot to a point she began using a fan to cool them down.  If he stood barefooted on a cold cement floor it helped sometimes.

His symptoms rapidly progressed to where he felt like he was living inside a scorching fire.  His mother felt desperate to relieve his agony, so she began short sessions of soaking his limbs in an ice-filled cooler.


They visited numerous doctors, but none could provide answers for his unusual, incapacitating symptoms.

Eventually, the frequent ice immersions caused swelling and deep lacerations all over his lower legs and feet.  Brayden was hospitalized, and crippled in pain beyond words.


“The pictures still make me cry every time I look at them,” his mother said.

The family continued visiting different physicians but no one knew what it was, or how to treat it. Sheena spent hundreds of frantic hours on the internet trying to diagnose her son’s condition. Brayden would have to wait two more grueling years for a diagnosis.

“I was so frustrated, and I couldn’t stand seeing my child in such pain. I wanted answers, and I wanted it treated fast,” Sheena recalls.


Finally, after several long-distant excursions to and from the Mayo Clinic in Rochester, Minnesota, a dermatologist gave them the devastating news. Brayden had a rare disease called Erythromelalgia (EM).  It affects 1.3 in 100,000 people, and there is no cure.

EM causes severe burning pain, evident redness of the skin, swelling, and increased skin temperature. The exact underlying cause remains unknown. However, it’s thought to result from vasomotor abnormalities or dysfunction in the normal constriction and dilation of the caliber of certain blood vessels, leading to abnormalities of blood flow to the extremities.

There isn’t a standard treatment for EM, and sometimes nothing helps.  Brayden has tried a bunch of different medications, and dealt with horrendous side effects.  Some of the prescriptions actually made the EM more painful.

Since the age of 3, Brayden has averaged about four hours of sleep a night (confirmed through a sleep study).  He sleeps bent over the bed with his feet hanging off so he can feel the fan’s breeze on his legs. He often wakes up in the middle of the night, struggling with pain.

Eight years later, 11-year-old Brayden still lives with crippling, chronic pain. His disease has progressed to his legs (from the knee on down), hands, ears, nose, and cheeks.  He feels like he is burning alive. He uses a fan almost 24 hours a day, and cannot tolerate shoes or socks.


Brayden is in the 6th grade, and still manages to attend a public school with the help of his wheelchair and a portable fan he keeps near his feet. His mother debates having him home schooled because she feels it’s so important for him to be around other children. The school system has worked with his parents in making adjustments for his physical limitations.

“He has come home from school, feeling sad after watching his friends play football or basketball, knowing he can’t participate,” his mother said with sorrow.

Brayden describes his intense burning as “feeling like my body is crying inside.”

He finds some small relief by crossing his legs and pulling them tightly against his chest. However, his physical therapist has discouraged him from doing this because overtime it could permanently weaken his posture and muscle integrity.


“After you get over being mad, and frustrated that no doctor can help him, we realized we needed to live with this. We try to come up with different ways to do things.”

Brayden has anxiety about leaving the house because he worries how his limbs will behave.

One time his family drove two hours to the zoo when Brayden overheated, and within 10 minutes he was in dire need of cooling packs and cold wet towels. Those methods didn’t provide any relief so they tried their vehicle’s air conditioning, which also didn’t work. They ended up having to leave.


“Every day I wish I could make all of this all go away so he can live a normal life,” his mother said.

He currently sees a pain specialist, neurologist, and pediatrician. Most often, he sees the pain management doctor.

Distraction is key when it comes to Brayden’s physical and mental survival. He enjoys playing games on his Xbox, and watching movies and YouTube videos. His favorite action hero is Batman. Occasionally he’ll have a friend over, and might try to play outside for 30 minutes if it’s cool or cloudy.

Strangers have called the police claiming child abuse, after seeing Brayden’s parents carrying him outside barefooted during winter months. On another occasion, authorities were called while Brayden and his family were dining together in a restaurant, again assuming he had been a victim of child abuse. His parents requested a doctor’s note to avoid such encounters in the future.


(Pictured above: Dad (Troy), Mom (Sheena), Sister (Jade), and Brayden)

“Coping as a family has been incredibly hard, but every day we learn, and try to find ways to accommodate Brayden’s needs,” Sheena said.

Brayden and his family have learned to deal with the constant staring and comments from strangers. Typical remarks include: “Wow, you’re really sunburned,” or “Did your legs get burned in a fire?”

He’s embarrassed to be seen in his wheelchair so he only ventures to the local department store about twice a year.

His mother would love it if others could show Brayden their support, so that he doesn’t feel so alone in the world.  Perhaps people could share a photo or words of encouragement on their personal social media account with “#BraydentheBrave” to let him know people do care, and it’s okay to enter a department store with a physical disability.


This article is also available on The Huffington Post:

To read my other article on Erythromelalgia on The Huffington Post:

Erythromelalgia Awareness Video:


What Kind of Christian Are You?

5 Habits Christians Should Break

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Christians are known for doing some amazing acts of kindness: feeding the hungry, caring for the sick, aiding the poor, and many other acts of love.

The Holy Trinity describes the belief in Christian spirituality that the one God of the universe is comprised of three persons: the God the Father, the Son, Jesus Christ, and the Holy Spirit. This principle is shared by most Christian denominations including Roman and Orthodox Catholics, Nazarenes, Lutherans, Baptists, Methodists, Presbyterians, Episcopalians, and more.

I was born into a Catholic family, and I’m incredibly grateful for my spiritual education.  I didn’t question my religion until after my divorce. If I wanted to remarry, I’d have to apply and pay for an annulment, and I didn’t understand the logic behind it. Would that insinuate our child had been “invalid” as well?  It made no sense to me.

I felt overwhelmed with the various Christian religions, and I decided I didn’t need a title. “I’m a Christian.” But is it that simple? I’m living in a world that dangles temptation and sin in my face on a daily basis. But I’m proud to say I’ve remained on my faithbound journey,  regardless of my hardships. I’m doing the best I can, yet knowing there’s always room for self improvement.


The following five suggestions are ways I feel we could improve ourselves as Christians:


  1. Stop the “Share this Post if You Love Jesus” Garbage. 


While scrolling through my Facebook newsfeed I’ve repeatedly seen trivial posts that state I should share them to show my love for Jesus. Some images have been blatant enough to say, “Don’t scroll past this without sharing!” I don’t need to pass along a frivolous post to show my love for Christ. Superficial material like this usually irritates people, Christian or not.  It could also trigger unnecessary guilt for a Christian reader who scrolls past it without sharing.

An image of a dog that was supposedly burned in a house blaze recently went viral on the Internet. The picture stated, “This poor dog was badly burned and disfigured trying to save his family from a house fire.”  It was shared over 127,000 times on Facebook.  It turned out to be a hoax that made national news. The dog merely had a piece of deli ham on its face, and he’s now a media sensation. Again, you see the “One Like = One Prayer. One Share = Ten Prayers.”


Before sharing anything religious on my social media I usually stop and ask myself, “Is this motivating and meaningful?”


  1. Don’t Be A Hypocrite. 


It’s easy to talk about our Christian endeavors, God’s love, and share our spiritual cheer on social media. Unfortunately, when it comes time for Christians to show their love for others, many of us fall short.

I’m not an athletic person, but I decided to join my previous church’s softball league for fun. I was unpleasantly surprised by the way I was treated. One of the Christian ballplayers harshly belittled me in front of our team and opponents for not catching the ball thrown my way. I felt so humiliated, and the person never apologized. None of the players consoled me, and I eventually quit the team.

Its acts like these that contradict what Christians truly stand for.  This is when potential followers lose interest, and hope, in Christianity.

It’s so important to show love and compassion to everyone. 


  1. Stop Trying to be the Boss of Church Money. 

I’ve heard remarks such as, “We’ve got Americans who need our help. I don’t want my money going to foreign countries.” If that’s the case, I hope your personal goods are only purchased from American owned and operated businesses. Otherwise, you’re already financially contributing to foreign countries, but for a far less worthy cause.

While I understand the rationale in wanting to assist America first and foremost, it’s hard for me to look at pictures of starving children in foreign countries, knowing I could have helped.


1 John 3:17 states, “But if anyone has the world’s goods and sees his brother in need, yet closes his heart against him, how does God’s love abide in him?”

“Our church just wasted our money on an expensive surround-sound system {smerk},” is another comment I’ve overheard.  The church isn’t required to function in the stone ages of technology.  If you enjoy your preacher’s sermons, isn’t that the real reason you’re there to begin with – to receive the message?

If you don’t feel comfortable tithing, another option would be to donate regularly to a charity or worthy cause you feel passionate about.


  1. Let’s Quit Pretending We’re Without Sin. 
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Every Christian is a sinner, and a work-in-progress up until the day they die.

There are individuals in my church fighting depression, sobriety, chronic pain, financial struggles, health crises, and other situations.

I’ve always been a Christian at heart even when I wasn’t worshipping or a member of a church. I drifted away several times due to emotional immaturity, self-indulgence, and temptation. I still struggle with weaknesses, but who doesn’t?  I like who I am today. I don’t think it’s weird that I can go from listening to hard rock or R&B music one day, to gospel music on another.  It depends on my mood. None of this means I stopped loving God, or that I’m a hypocrite. Every Christian should experience their personal relationship with Christ at their own pace, and we all love God in unique ways.


Alice Cooper, the rock megastar who wears scary makeup, stopped his hard-partying ways, gave up his addictions, and returned to his Christian roots in the late-1980s. Today, he’s still immensely popular and touring.  Anyone can change, but sin will always be lurking no matter how hard we try to avoid it.

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  1. Don’t be Judgmental. 
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Nothing good can come from being judgmental toward others.

Kim Davis, America’s highest-profile county clerk who denied marriage licenses to same-sex couples, brought out the unholy in many Christians. I saw Christian protesters holding neon signs that read, “GOD HATES FAGS,” and “GOD HATES PROUD SINNERS!”  The interesting part is that Davis has married four times and divorced three times, and given birth to two children out of wedlock.

Even “if” a Christian viewed same-sex couples, abortion-seeking-women, adulterers, etc., as foes, the Bible says to love your enemies. Luke 6:27-32 states, “But I say to you who are listening, love your enemies. Do good to those who hate you, bless those who curse you, pray for those who are cruel to you.”

I don’t want to be affiliated with Christians who make interpretations of evils and its influences, then chant outside with their posters of hatred. They’re using God’s name in an ugly manner.

Many Christians feel that suppressing judgment is a form of accepting, disregarding, and even sustaining sin. That’s not the case. Only God can judge the sins of others, and I don’t believe The Creator of the Universe needs our help in doing so.

If we are to represent God, our actions need to reflect it. Let’s show everyone that we’re kind, genuine, loving people who want to make the world a better place. ~ Amen ~

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This blog is also located on The Huffington Post:

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…. You May Think Your Life Is Tough But Think Again ….



6 Things Christ Accomplished by His Death

Here’s a very brief summary of the six core things Christ accomplished in his death.

  1. Expiation

Expiation means the removal of our sin and guilt. Christ’s death removes — expiates — our sin and guilt. The guilt of our sin was taken away from us and placed on Christ, who discharged it by his death.  Thus, in John 1:29, John the Baptist calls Jesus “the Lamb of God who takes away the sin of the world.” Jesus takes away, that is, expiates, our sins. Likewise, Isaiah 53:6 says, “The Lord has caused the iniquity of us all to fall on him,” and Hebrews 9:26 says “He has been manifested to put away sin by the sacrifice of Himself.”

  1. Propitiation

Whereas expiation refers to the removal of our sins, propitiation refers to the removal of God’s wrath. By dying in our place for our sins, Christ removed the wrath of God that we justly deserved. In fact, it goes even further: propitiation is not simply a sacrifice that removes wrath, but a sacrifice that removes wrath and turns it into favor. (Note: a propitiation does not turn wrath into love — God already loved us fully, which is the reason he sent Christ to die; it turns his wrath into favor so that his love may realize its purpose of doing good to us every day, in all things, forever, without sacrificing his justice and holiness.)

Several passages speak of Christ’s death as a propitiation for our sins. Romans 3:25-26 says that God “displayed [Christ] publicly as propitiation in his blood through faith. This was to demonstrate his righteousness, because in the forbearance of God he passed over the sins previously committed; for the demonstration of his righteousness at the present time, that he might be just and the justifier of him who has faith in Jesus.”  Likewise, Hebrews 2:17 says that Christ made “propitiation for the sins of the people” and 1 John 4:10 says “in this is love, not that we loved God, but that he loved us and sent his Son to be the propitiation for our sins.”

  1. Reconciliation

Whereas expiation refers to the removal of our sins, and propitiation refers to the removal of God’s wrath, reconciliation refers to the removal of our alienation from God.  Because of our sins, we were alienated — separated — from God. Christ’s death removed this alienation and thus reconciled us to God. We see this, for example, in Romans 5:10-11: “For if while we were enemies, we were reconciled to God through the death of his Son, much more, having been reconciled, shall we be saved by his life.”

  1. Redemption

Our sins had put us in captivity from which we need to be delivered. The price that is paid to deliver someone from captivity is called a “ransom.” To say that Christ’s death accomplished redemption for us means that it accomplished deliverance from our captivity through the payment of a price.

There are three things we had to be released from: the curse of the law, the guilt of sin, and the power of sin. Christ redeemed us from each of these.

  • Christ redeemed us from the curse of the law: “Christ redeemed us from the curse of the law, having become a curse for us” (Galatians 3:13-14).
  • Christ redeemed us from the guilt of our sin. We are “justified as a gift by his grace, through the redemption which is in Christ Jesus” (Romans 3:24).
  • Christ redeemed us from the power of sin: “knowing that you were not redeemed with perishable things like silver or gold from your futile way of life inherited from your fathers, but with precious blood, as of a lamb unblemished and spotless, the blood of Christ” (1 Peter 1:18-19).

Note that we are not simply redeemed from the guilt of sin; to be redeemed from the power of sin means that our slavery to sin is broken. We are now free to live to righteousness. Our redemption from the power of sin is thus the basis of our ability to live holy lives: “You have been bought with a price; therefore glorify God in your bodies” (1 Corinthians 6:20).

  1. Defeat of the Powers of Darkness

Christ’s death was a defeat of the power of Satan. “He disarmed the rulers and authorities and put them to open shame, by triumphing over them in him” (Colossians 3:15). Satan’s only weapon that can ultimately hurt people is unforgiven sin. Christ took this weapon away from him for all who would believe, defeating him and all the powers of darkness in his death by, as the verse right before this says, “having forgiven us all our trespasses, by canceling the record of debt that stood against us with its legal demands. This he set aside, nailing it to the cross” (Colossians 2:13-14).

  1. And he Did All of This By Dying As Our Substitute

The reality of substitution is at the heart of the atonement. Christ accomplished all of the above benefits for us by dying in our place — that is, by dying instead of us. We deserved to die, and he took our sin upon him and paid the penalty himself.   This is what it means that Christ died for us (Romans 5:8) and gave himself for us (Galatians 2:20). As Isaiah says, “he was pierced through for our transgressions, he was crushed for our iniquities . . . the Lord has caused the iniquity of us all to fall on him” (Isaiah 53:5-6). You see the reality of substitution underlying all of the benefits discussed above, as the means by which Christ accomplished them. For example, substitution is the means by which we were ransomed: “The Son of Man did not come to be served, but to serve, and to give his life a ransom for many” (Matthew 20:28). Christ’s death was a ransom for us — that is, instead of us. Likewise, Paul writes that “Christ redeemed us from the curse of the law by becoming a curse for us” (Galatians 3:13).

Substitution is the means by which we were reconciled: “For Christ also died for sins once for all, the just for the unjust, in order that he might bring us to God” (1 Peter 3:18). It is the means of expiation: “He made him who knew no sin to be sin on our behalf that we might become the righteousness of God in him” (2 Corinthians 5:21) and “He himself bore our sins in his body on the cross, that we might die to sin and live to righteousness” (1 Peter 2:24). And by dying in our place, taking the penalty for our sins upon himself, Christ’s death is also the means of propitiation.



EM Help

The pain is often times unbearable, and the suicide rate is high.

Imagine yourself living during the medieval times, and although you’re an innocent person, you’re about to be secured to a wooden post and burned alive while a crowd of people watch.  That pretty much describes the impending doom when diagnosed with EM. The only differences are EM sufferers’ burn alive on a daily basis — and we’re not tied to a stake.

EM causes severe burning pain, noticeable redness (erythema) of the skin, swelling, and increased skin temperature, particularly of the feet. However, the hands, face, ears, and limbs can also be affected.  It can affect men, women, and children of all ages and nationalities.  1 : 100,000 (subject to change).

My EM friends are some of the most amazing people I have ever known. When an EM warrior is down we all chime in to lift their spirits, letting them know we’re all in this together. Our warriors reside all over the world — USA wide, Canada, Norway, England, Scotland, Argentina, New Zealand, Italy, Sweden and France, just to name a few.

We’ll never give up.  WE NEED A CURE.



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There are very few moments that can happen in one’s life that can change everything forever. In a split second your relationships change, your job, your finances, your home, your clothes, your independence. One moment gone terribly wrong and it’s all different. On May 23, 2010, Rachelle Friedman was playfully pushed into a pool by her best friend at her bachelorette party just weeks before her wedding. She hit the bottom of the pool head first, breaking her neck and causing a severe spinal cord injury. Rachelle had to face a difficult fact. She was now paralyzed from the chest down and would be a quadriplegic for the rest of her life.

Rachelle could have easily given up on life, constantly asked why her and wondered what if? But she made the decision to move forward in her life with positivity and determination. 13 weeks after her injury she began playing adapted sports such as wheelchair rugby, hand cycling and even surfing. Within a year she had appeared on The Today Show, Headline News, MSNBC, Inside Edition and numerous news outlets both nationally and internationally to share her story of love, commitment, loyalty, and perseverance. She has been featured in Cosmopolitan magazine, In Touch magazine and as a guest on Vh1′s Couples Therapy.

Though she has remained positive, Rachelle is an advocate for a cure. She hopes to inspire you while conveying the hard realities of having a spinal cord injury. She plans on being positive as her situation is her current reality, but remains hopeful that research is headed for a cure.

Rachelle has made it her mission to spread her story in hope of inspiring others to make the most of each day they are given. “Why waste your time harping on insignificant things?” Rachelle asks. “Believe in defining your life by the positive moments and not the negative.”

Rachelle Friedman Chapman and Chris Chapman have made sure their new baby Kaylee Rae is surrounded by love. Since welcoming her via surrogate on April 26, 2015 the new parents have gotten used to life with a newborn.




Michael J. Fox’s Crusade for a Parkinson’s Cure

How the actor’s Parkinson’s diagnosis changed his life — for the better, he says.

Michael J. Fox has always been a poster boy. With his youthful good looks and intelligent charm, he rose to fame playing a sassy Republican teenage son of ex-hippie parents in the TV sitcom Family Ties. In the blockbuster Back to the Future film trilogy, he was a time traveler with perfect comedic timing. And in a later sitcom, Spin City, he made us wish all politicians were as personable as his Deputy Mayor Mike Flaherty.

In 1998, Fox became a poster boy for another reason: He went public with the news he had Parkinson’s disease diagnosed 7 years earlier when he was 30. Parkinson’s is marked by:

  • Trembling in the hands, arms, legs, jaw, and face
  • Stiffness of the body
  • Slow movements
  • Impaired balance and coordination.

The disease had become unmanageable for the actor, who until then was able to minimize his symptoms thanks to medication, surgery, and good timing. Eventually, the effort became too much.

“I needed every bit of those 7 years to say, ‘I want to be out there,'” Fox says. “But at a certain point I woke up and said, ‘What’s the risk? That people will judge you? People are already judging you about whether you wear red shoes or blue shoes. So I talk funny or shake — why should I restrict myself?'”

“You have to take your time and do what you need to do,” he says. “But when you arrive at a place where you are no longer judging it, where there’s no good or bad or right or wrong and it just is what it is, you accept it.”

Much to his amazement, so did everyone else. While Fox feared becoming a sob story for the tabloids, he was met with huge support. Overnight, the actor beloved for his ability to make people laugh came to represent the face of an incurable illness that gets worse over time.




Christopher Reeve was born September 25, 1952 in New York City. He had various stage and television roles before becoming the star of Superman and its sequels. In 1995 he became paralyzed from the neck down following a horse-riding accident. He founded the Christopher Reeve Paralysis Foundation in 1998 to promote research on spinal cord injuries. He died of cardiac arrest in 2004.




A 12-year-old burn victim from Romania has found hope, and a new family, in the United States.  Marius Dasianu is a remarkable youngster who has been undergoing treatment at the Shriners Hospital for Children in Los Angeles.

On a visit to the hospital’s recreation room, Marius tests his gaming skills with two new friends.  He is as energetic and active as any other youngster.

But his story is dramatic.  Marius was born in Romania and at the age of 9, lost both of his parents in a house fire.  He suffered serious burns over 75 percent of his body.  He was visited in his Romanian hospital by two American volunteers, Jessica Free and Ashley Ludlow.  The young women got their families involved and they enlisted the help of this American hospital, which provides treatment for children with orthopedic conditions and disfigurements.

Marius has had his big toes removed and grafted onto his hands to replace his fingers. Plastic surgeon Katherine Au says Marius has maintained a positive outlook, despite his injuries. “He lost all of his fingers, essentially, burned his face, lost his entire nose, and if you talk to him now, he has the most girlfriends, he was class valedictorian, he does everything.  Nothing stops him,” she said.

Marius faces many more surgeries.  His American foster mother, Lynne Woodward, says he has endured the ordeal without complaint.

“He’s the most amazing kid you’ll ever meet.  He inspires everybody wherever he goes.  He makes friends so easily.  He makes people feel comfortable.  He’s got a really amazing set of social skills,” Woodward said. “He really does.”

Marius’ older brother, Lonut, who had been living in Italy, brought Marius to America as his legal guardian. Lonut would later marry the Woodward’s daughter, Ashley, one of the young women who had found Marius in the hospital.  They are now the parents of a baby boy.

Marius’ foster father, Paul Woodward, anticipates a bright future for the boy.  “It’s going to be nice to see what the future holds, and see him grow to be a man and get married and have children of his own, and hopefully give us many grandchildren and maybe some great grandchildren if we’re around long enough,” he said.

First, though, there will be a long road to full recovery.  But Marius’ doctor and foster family say his positive attitude and buoyant spirit will help them all get through it.




Noah Galloway (born in 1982 in Birmingham, Alabama) is an American Sergeant, personal trainer and motivational speaker. He joined the United States Army in 2001, serving in the 1st Battalion of the 502nd Infantry, 101st Airborne Division, during Operation Iraqi Freedom. In 2005, during his second tour of duty, Noah lost his left arm and left leg in an IED attack. He faced a rough recovery, and the period after his injury was wrought with alcohol abuse and smoking. He has since turned his life around and now works as a popular public speaker. Galloway has also appeared on the cover of Men’s Health magazine. He competed on season 20 of Dancing with the Stars.



Lauren Hill, the college basketball player whose cancer battle captured the country’s attention and raised millions of dollars to fight the disease, died at the age of 19.

Hill was diagnosed with terminal cancer during her senior year of high school. In the fall doctors told her that she had just months to live — the inoperable tumor on her brain growing with each passing day — but she beat those odds, playing in the season-opener for Mount St. Joseph’s and earning a spot on the Heartland Collegiate Athletic Conference’s first team.

But it wasn’t her play that earned her accolades, it was her fight. Hill dedicated herself to raising money to help others fight the disease that was taking her life — Diffused Intrinsic Pontine Giloma.

“Through Lauren’s fund-raising and advocacy efforts she not only became a spotlight on the lack of funding for cancer research, but she most certainly has become a beacon guiding researchers for years to come,” Brook Desserich, co-founder of The Cure Starts Now, Hill’s foundation, said on the group’s Facebook page.

A year and a half ago, Hill was just another high school student getting ready for college and decided to play basketball at Mount St. Joseph. Soccer was her favorite sport, but basketball became her selling point.

A few weeks later, she started experiencing dizziness while playing for her high school team in nearby Lawrenceburg, Indiana. Tests found the tumor. Treatment didn’t work. She knew she had less than two years left.

“She’s made an impact on the world, more so than me — more than I ever will do,” Dan Benjamin, her coach, told The Associated Press. “I’ve gotten so many emails and phone calls from all over the world. People are contacting me because they want to share her story.”




Chris Tomlinson, a 28-year-old homeless burn victim, inspired people by his experience.  When he was nearly 2 years old, Tomlinson slipped out from a swing in his Florida backyard and ventured to the shed when his mother wasn’t looking. He dumped gasoline on himself and after the pilot light on the heater ignited, it set the little boy on fire. His mother rescued him from the shed and doctors gave him a 1 percent chance of surviving the night.

The candid survivor shared the horrific details of how he was burned on more than 98 percent of his body when he was a toddler and how he’s continued to fight the bevy of obstacles he’s faced since, as he believes he looks like a monster now.




It’s been so long since Kaitlyn Dobrow went anywhere in her wheelchair that the battery on her family’s ramp-equipped van died recently from lack of use.

Three years after bacterial meningitis led to the amputation of all four of her limbs, Dobrow has fully adjusted to the prosthetic legs she wears from morning to night. She’s still mastering her prosthetic arms, after receiving the left one only a month ago.

“With the legs, I can do anything now,” she said. “I can go into my friends’ houses instead of saying, ‘Do you have a ramp? I’m in a wheelchair.’ It’s just so much easier. My legs get a little achy but it’s nothing that hinders me. Before I’d wear them for an hour and they’d start hurting.”

With her arms, Dobrow has swept the floor, folded laundry, doodled and fed herself. She’s now working on conquering the fears that stand between her and greater self-sufficiency, including climbing the stairs in her two-story Huntington Beach house and attending cosmetology school.

“God told me 2016 is going to be my year,” she said. “I’m excited but nervous to actually get my life started. I’ve been so coddled for years and so taken care of. Now I have to start doing it on my own.”

Her mother, Kathi Dobrow, helps her dress and bathe but hopes eventually she can get waterproof limbs.

“What I am anxious for is for Katie to start working on getting independent from me,” Kathi Dobrow said. “I’m 60 and I want to have the confidence she’ll be OK when I get too old to take care of her. She needs to figure out how she will support herself and what she wants to do school- and career-wise.”

In February 2013, Dobrow nearly died after contracting bacterial meningitis. The infection caused her blood to clot, stopping it from reaching more than half of her skin and soft tissues. The resulting damage was the equivalent of third-degree burns.

She spent six months in the intensive care unit at UCI Medical Center; underwent more than 20 surgeries, including skin grafts; and then stayed two months in a rehabilitation hospital.

Candy Cooper, a UCI nurse who cared for Kaitlyn Dobrow, said she was overjoyed when she walked into the burn unit to visit, calling her recovery “nothing short of a miracle.”

“It’s not just her physical progress but her mental progress,” Cooper said. “Things like this change you. You get a different introspective on your life than you normally would have. It forces you to look deep in your soul, at what people mean to you, and how strong you really are.”

Inner peace

Kaitlyn Dobrow said her illness transformed her inner self as much as her outer self. She used to believe she would die young. She partied and put off planning for her future. Her own insecurities made her defensive and short-tempered with others, she said.

She said she experienced God’s love for her in the hospital and dedicated her life to Christ. She spends much of her free time now at church and Bible study.

She felt terrified in the hospital as she lost skin and limbs but said she fully experienced peace, leaving her compelled to share with others Jesus’ words from John 14:27: “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.”

“I don’t feel that sense of doom anymore,” she said. “I want to live.”

Kaitlyn Dobrow said her older brother told her how much she’s changed during a road trip to Las Vegas.

“He was like telling me, ‘Before, you were so mean and there was nothing wrong with you. You had your arms and you were mean,’” she recalled. “‘Now you’re just a torso and you’re so nice.’”

Adapting to her limbs

Her greatest frustration is mastering her arms, which weigh about 10 pounds each and must be strapped across her chest and back.

“The arms irritate me the most,” she said. “It’s more mental. I remember my old occupational therapist said, ‘If you get frustrated, it just gets harder. Your muscles tense. You just have to take a break.’”

She’s able to write in big letters using her right prosthetic.

“It’s kind of adorable. It’s not as bad as a kindergartner. You can read it,” she said. “My main thing before was doodling. I got the desire to pick up a pencil and scribble a heart. I missed that so much.”

As for her prosthetic legs, Kaitlyn Dobrow has embraced how sleek and stylish she looks and is eager to get running legs so she can push herself more.

“You feel like you could fall at any moment,” she said of wearing prosthetics. “You don’t have any ankles or even toes to help hold you up. You kind of feel like a daredevil. In a way, it’s fun.”

The pink blotchy scars on her face from the clotting and lack of blood flow to her tissues have become less noticeable.

“God said that shows you’re a warrior, don’t try to hide them. I’m getting kind of upset that they’re fading. I think they look pretty cool.”




Australian ex-model Turia Pitt suffered burns to 65% of her body, lost her fingers and thumb on her right hand and spent 5 months in the hospital after she was trapped by a grassfire.  Her husband quit his job to care for her recovery.  In an interview for CNN, they asked him: “Did you at any moment think about leaving her and hiring someone to take care of her and moving on with your life?”  His reply touched the world, “I married her soul, her character, and she’s the only woman that will continue to fulfill my dreams.”




The Girl in the Closet: Lauren Kavanaugh Was Held Prisoner for 6 Years, Until Her Rescue in 2001

This is one of the most horrific cases of abuse that we have ever heard in our entire lives. We can’t even begin to comprehend how anyone could do something like this to another human being, let alone an innocent child.

When Lauren Kavanaugh was taken away from her loving, adoptive parents, she was immediately returned to her biological mother and father, Barbara and Kenny Atkinson.

From that moment on, her life became a dark, living hell. For the next six years, she would be neglected, tortured, starved, beaten and raped.

The evil couple forced her to live in a tiny, filthy 4ft by 9ft wardrobe closet from the ages of three until she was eight-years-old.

“From then on, it became my new home,” she said. “The carpet was drenched in urine, and I lay under a thin, wet blanket.”

Surprisingly, her siblings were never abused.

“Sometimes I could hear them laughing and playing outside,” she explained. “I was weak from hunger and was tied down so I couldn’t fight back.”

Police were finally alerted about her conditions when Lauren’s father tried showing her off to a horror-struck neighbor.

By the time she was pulled from the closet by authorities, her ribs stuck out and she only weighed 25 pounds, the same as an average two-year-old.

Lauren went on to be re-adopted by the Kavanaugh family. She now lives in Athens, Texas, and hopes she can one day help abuse victims like herself.

“My dream now is to qualify as a counselor,” she said. “I really want to help victims like me to overcome their abuse and be strong. I’ve been in their shoes and come out the other side.”

Her mother later confessed that she was trying to forget that her daughter even existed. She often referred to Lauren as “it” or “the girl” but never by name.

“It was the problem. It was what was causing everything,” she was quoted saying in The Dallas Morning News. “Out of sight, out of mind. I shut it away and don’t think of it. … I couldn’t stop her being in the closet.”

In 2002, her birth parents were convicted of felony injury to a child and sentenced to life in prison. They will not be eligible for parole until 2031.

It may be difficult to get through stories like this, but we’re happy to know that her parents were brought to justice for their atrocities.




Randolph Frederick “Randy” Pausch (October 23, 1960 – July 25, 2008) was an American professor of computer science, human-computer interaction, and design at Carnegie Mellon University. Pausch learned that he had pancreatic cancer in September 2006, and in August 2007 he was given a terminal diagnosis: “3 to 6 months of good health left”. He gave an upbeat lecture titled “The Last Lecture: Really Achieving Your Childhood Dreams” on September 18, 2007, at Carnegie Mellon, which became a popular YouTube video and led to other media appearances. He then co-authored a book called The Last Lecture on the same theme, which became a New York Times best-seller. Pausch died of complications from pancreatic cancer on July 25, 2008.




Schenectady, New York, Safyre, her father, 32-year-old David Terry, and her three younger siblings, three-year-old Layah, two-year-old Michael and 11-month-old Donavon, were the victims of an arson attack.  Five-year-old Safyre was the only survivor and suffered severe burns to over 75 percent of her body.  Firefighters found her next to her father who used his body in an effort to shield her from the flames.  Since then, Safyre has undergone more than 50 operations, including surgeries to remove her right hand and in March this year, her left foot. Now eight, she only had one wish this Christmas – to have enough cards to fill her tree. So far, she’s received 1.7 million letters and 25,000 packages.




The kidnapping of Jaycee Lee Dugard occurred on June 10, 1991, in South Lake Tahoe, California. Dugard was 11 years old at the time and was abducted from a street while she was walking from home to a school bus stop. Searches began immediately after Dugard’s disappearance, but no reliable leads were generated. Dugard later remained missing up until 2009, when a convicted sex offender, Phillip Garrido, visited the campus of UC Berkley accompanied by two girls on August 24 and 25 that same year. Their unusual behavior sparked an investigation that led Garrido’s parole officer to order him to bring the girls to a parole office on August 26, accompanied by a young woman who was successfully identified as Dugard herself. She had been imprisoned, sexually abused, tortured and gave birth to two of his daughters.

Phillip Garrido, 58, and his wife Nancy, 54, of Antioch, California, were arrested by police for kidnapping and other charges. On April 28, 2011, they pleaded guilty to Dugard’s kidnapping and sexual assault. Law enforcement officers believe Dugard was kept in a concealed area behind the Garridos’ house in Antioch for almost 18 years. During this time, Dugard bore two daughters who were ages 11 and 15 at the time of her reappearance. On June 2, 2011, Phillip Garrido was sentenced to 431 years imprisonment; his wife, Nancy, also received 36 years to life.




On June 2, 2002, when she was 14 years old, Smart and her family attended an end-of-year awards ceremony at her school, where she won several awards for academics and physical fitness. Early the next morning, about an hour after midnight, Smart was awakened in the bedroom she shared with her younger sister Mary Katherine by the sound of footsteps and the feeling of cold metal against her cheek. A man whispered, “I have a knife to your neck. Don’t make a sound. Get out of bed and come with me, or I will kill you and your family.” The kidnapper, a man by the name of Brian Mitchell, led Smart out of the house and marched her for hours through the forest to a camp where his wife, Wanda Barzee, was waiting.

Mitchell fancied himself a prophet named Immanuel, and after performing a bizarre wedding ceremony—he was also a polygamist—he declared Smart to be his wife and raped her. “I tried to fight him off me,” she later testified. “A 14-year-old girl against a grown man doesn’t even out so much.” Mitchell and Barzee held Smart captive for the next nine months as they moved between California and Utah. Mitchell raped Smart daily—sometimes multiple times per day—and frequently kept her tethered to a tree. He forced her to consume vast quantities of alcohol, marijuana and other drugs and often did not feed her for days—bringing Smart to the brink of starvation. All the while, Mitchell attempted to indoctrinate Smart in his bizarre religious beliefs and convince her that he was a prophet.

The night of Smart’s kidnapping, her younger sister Mary Katherine had pretended to be asleep in the other bed while silently attempting to observe her sister’s kidnapper in the dark. “I stayed in bed,” she recalled. “I was scared. I couldn’t do anything. I was just shocked, petrified. I didn’t know what to do, knowing someone had come into my bedroom and taken my sister.” After several months, it suddenly occurred to Mary Katherine that the kidnapper resembled a man who had once worked on their home as a handyman and who had called himself Immanuel. Police discovered that Immanuel was a man named Brian David Mitchell, and in February 2003 America’s Most Wanted aired his photograph. Finally, on March 12, 2003, a passerby recognized Mitchell walking with Smart—who was veiled and wearing a wig and sunglasses. Authorities arrested Mitchell and his wife and returned Smart to her family that evening.




Mother Teresa (26 August 1910 – 5 September 1997) also known as Blessed Teresa of Calcutta, MC, was an Albanian Roman Catholic religious sister and missionary. She was born in Skopje (modern Macedonia), then part of the Kosovo Vilayet in the Ottoman Empire. After having lived in Macedonia for some eighteen years, she moved to Ireland and then to India, where she lived for most of her life.

Mother Teresa founded the Missionaries of Charity, a Roman Catholic religious congregation, which in 2012 consisted of over 4,500 sisters and was active in 133 countries. They run hospices and homes for people with HIV/AIDS, leprosy and tuberculosis; soup kitchens; dispensaries and mobile clinics; children’s and family counseling programs; orphanages; and schools. Members must adhere to the vows of chastity, poverty, and obedience, as well as a fourth vow, to give “wholehearted free service to the poorest of the poor”.

Mother Teresa was the recipient of numerous honors, including the 1979 Nobel Peace Prize. In 2003, she was beautified as “Blessed Teresa of Calcutta”. A second miracle was credited to her intercession by Pope Francis, in December 2015, paving the way for her to be recognized as a saint by the Roman Catholic Church.

A controversial figure both during her life and after her death, Mother Teresa was widely admired by many for her charitable works. She was both praised and criticized for her pro-life views. She also received criticism for conditions in the hospices for which she was responsible. Her official biography was written by an Indian civil servant, Navin Chawla, and published in 1992.




Dr. Wayne Dyer, the renowned motivational guru and author of dozens of self-help books, has died at age 75.

Dyer rose to prominence after the publication of his first book, 1976’s “Your Erroneous Zone,” became an international bestseller. That launched Dyer’s career as an author and speaker and garnered him a legion of ardent fans, who dubbed him the “father of motivation.”

His basic message was simple: Think good thoughts, and good things will surely follow.

“Take the last five minutes of your day, and put your attention on everything that you would like to attract into your life: ‘I am well. I am healed. I am in perfect health. I am abundant. I am happy.’ Say those things to yourself. Then you’ll marinate for eight hours, and you’ll awaken and you’ll begin to attract the things that are in your subconscious mind.”

Dyer’s own story is motivating in its own right: Born Michigan, he spent part of his childhood in orphanages and foster homes. He went on to earn a doctorate in educational counseling from Wayne State University and was teaching at St. John’s University in New York when the success of “Your Erroneous Zone” altered his professional course.




Melody Beattie is one of America’s most beloved self-help authors and a household name in addiction and recovery circles. Her international bestselling book, Codependent No More, introduced the world to the term “codependency” in 1986. Millions of readers have trusted Melody’s words of wisdom and guidance because she knows firsthand what they’re going through. In her lifetime, she has survived abandonment, kidnapping, sexual abuse, drug and alcohol addiction, divorce, and the death of a child. “Beattie understands being overboard, which helps her throw bestselling lifelines to those still adrift,” said Time Magazine.

Melody was born in St. Paul, Minnesota in 1948. Her father left home when she was a toddler, and she was raised by her mother. She was abducted by a stranger at age four. Although she was rescued the same day, the incident set the tone for a childhood of abuse, and she was sexually abused by a neighbor throughout her youth. Her mother turned a blind eye, just as she had denied the occurrence of abuse in her own past.

“My mother was a classic codependent,” Melody recalls. “If she had a migraine, she wouldn’t take an aspirin because she didn’t do drugs. She believed in suffering.” Unlike her mother, Melody was determined to self-medicate her emotional pain. Beattie began drinking at age 12, was a full-blown alcoholic by age 13, and a junkie by 18, even as she graduated from high school with honors. She ran with a crowd called “The Minnesota Mafia” who robbed pharmacies to get drugs. After several arrests, a judge mandated that she had to “go to treatment for as long as it takes or go to jail.”

Melody continued to score drugs in treatment until a spiritual epiphany transformed her. “I was on the lawn smoking dope when the world turned this purplish color. Everything looked connected–like a Monet painting. It wasn’t a hallucination; it was what the Big Book of Alcoholics Anonymous calls ‘a spiritual awakening.’ Until then, I’d felt entitled to use drugs. I finally realized that if I put half as much energy into doing the right thing as I had into doing wrong, I could do anything,” Beattie said.

After eight months of treatment, Melody left the hospital clean and sober, ready to take on new goals: helping others get sober, and getting married and having a family of her own. She married a former alcoholic who was also a prominent and respected counselor and had two children with him. Although she had stopped drinking and using drugs, she found herself sinking in despair. She discovered that her husband wasn’t sober; he’d been drinking and lying about it since before their marriage.

During her work with the spouses of addicts at a treatment center, she realized the problems that had led to her alcoholism were still there. Her pain wasn’t about her husband or his drinking; it was about her. There wasn’t a word for codependency yet. While Melody didn’t coin the term codependency, she became passionate about the subject. What was this thing we were doing to ourselves?

Driven into the ground financially by her husband’s alcoholism, Melody turned a life-long passion for writing into a career in journalism, writing about the issues that had consumed her for years. Her 24-year writing career has produced fifteen books published in twenty languages and hundreds of newspaper and magazine articles. She has been a frequent guest on many national television shows, including Oprah. She and her books continue to be featured regularly in national publications including Time, People, and most major periodicals around the world.

Although it almost destroyed her when her twelve-year-old son Shane died in a ski accident in 1991, eventually Melody picked up the pieces of her life again. “I wanted to die, but I kept waking up alive,” she says. She began skydiving, mountain-climbing, and teaching others what she’d learned about grief.



Friends and Family – Friends and family have the ability to inspire you to be the best you can be. Friends are often able to step into the void when a supportive family doesn’t exist. You can count on friends and family to be there through good times and bad. They are there to pick you up when you fall, and ready to pat you on the back when you deserve it. Family accepts you for who you are while at the same time encouraging you to become all that you can be

Love – Love is an amazing thing! There is very little that will ignite a passion more than love. Love truly is a force to be reckoned with. Love never fails to motivate and inspire.

Nature – The peace and inspiration found by spending time with nature is like none other. The simplicity and beauty experienced as one communes with nature can be refreshing, invigorating and inspiring! Nature can be experienced almost anywhere, and can easily be incorporated into your everyday life. Nature can be as small as a potted plant on your desk or as large as the Amazon rain forest, and anything in between.

The Arts – Music, great writing, art and even acting all have the ability to touch the soul in a very unique and individual way. Art, in its many forms, moves and inspires you. The arts provide a means for you to escape to exotic, supernatural and exciting places, discovering new worlds and new things about yourself. The arts can challenge you to think and feel differently creating an environment where inspiration meets reality, often setting the stage for change.

Dreams – The dreams you have … the ones where you strive to create a better life for yourself and those around you frequently inspire you to reach beyond yourself. Your dreams motivate you to think differently in order change the status quo. We all have dreams … dreams to travel, to change lives, to build and create things. These dreams inspire us to grow in order to realize their fulfillment.

Forgiveness – Forgiveness is a gift … one you give to yourself even more than you give to the person who needs to be forgiven. Forgiveness releases you to move on with your life, not allowing the actions of another to hold you back. Lack of forgiveness can be a very destructive force. A true act of forgiveness inspires all who witness it and has the potential to transform the lives of all involved.

What Inspires You #GOFORIT




Imagine yourself living during the medieval times and although you’re an innocent person, you’re about to be secured to a wooden post and burned alive while a crowd of people watch.  That pretty much describes the impending doom when diagnosed with Erythromelalgia (EM).  The only differences are EM sufferers’ burn alive on a daily basis and we’re not tied to a stake. With today’s technology it’s hard to believe we’re still somewhat living in the stone ages in understanding EM.  The exact underlying cause remains unknown. However, the condition is thought to result from vasomotor abnormalities or dysfunction in the normal narrowing (constriction) and widening (dilation) of the diameter (caliber) of certain blood vessels, leading to abnormalities of blood flow to the extremities.

EM causes severe burning pain, noticeable redness (erythema) of the skin, swelling, and increased skin temperature, particularly of the feet. However, the hands, face, ears, and limbs can also be affected. Although both sides of the body are usually affected, it can be limited to only one side. Primary EM may occur randomly for unknown reasons or rarely may be familial.  Secondary EM occurs when an underlying condition such as an autoimmune disease, neuropathy or Lyme disease is present, to name a few.  Some people burn continuously throughout the day while others have intermittent episodes of ‘flaring.’  The excruciating flares can last from hours to days at a time.  Nighttime tends to be worse. Episodes are mostly brought on by warm temperatures, eating spicy food, alcohol consumption, temperature fluctuations, exercising and walking. The pain can be so intense that a patient cannot walk.

The first stage of misery is figuring out your own diagnosis.  Most EM patients journey from one doctor to the next for several years before receiving an accurate diagnosis.  It’s not uncommon to be misdiagnosed with Raynaud’s disease, Cellulitis or various other conditions. In my case, I obsessively researched my symptoms online for nearly a year before coming across a few EM pictures. I was absolutely terrified. I didn’t think it was possible I could be ‘1 in 100,000.’ I knew I was a unique person but seriously?  C’mon.  That had been the one time I’d rather be just like everybody else in the world. Because the disease is rare most doctors have never seen or heard of it. I brought in an EM brochure and cell phone pictures to show my local neurologist. He had only seen one previous case in his 30-year career.  Apparently I lucked out in that he had at least seen it before. I decided to make the two-hour excursion to Johns Hopkins for further testing.  After repeated visits with various specialists, blood work, urine samples, and gene mutation testing, I am still in the same position today — no answers.

The endless voyage has just begun once a patient receives their official diagnosis. Several doctors turn patients away because they don’t feel comfortable treating a disease they’ve never heard of. Some physicians aren’t willing to work with patients when it comes to experimenting with various medications until some form of relief is found.  Unfortunately there’s no understanding on which type of doctor a patient should see – neurologist, dermatologist, hematologist, rheumatologist, podiatrist, geneticist, internal medicine, cardiologist, pain management or a primary care physician. The pain feels and looks like a scorching fire inside the limbs. Desperation leads a patient to erratic thoughts of flying across the county to see any renowned doctor who could possibly provide some relief.  I’d jump up and down on one leg in a blazing desert while eating live crickets if a doctor said it would cure me.  It reminds of that 1980’s USA commercial with their infamous motto, “What would you do for a Klondike bar?” For us, the saying would be, “What would you do for an EM cure?” I’m sure our applicants could get pretty creative. I don’t want to accept a portable fan and foot elevation as my only means of continued existence the rest of my life.

The pain is often unbearable and the suicide rate is high. When I first got diagnosed I made the mistake of going online and researching ‘Erythromelalgia stories.’ I read obituaries of victims who could no longer deal with their excruciating pain. I also came across EM clinical trials where some patients had died by suicide before the trial concluded. I read the phrase ‘wheelchair bound’ in several articles.  I felt incredibly isolated, afraid, and far away from the ordinary world.

No one medication, therapeutic method, or procedure has been consistently effective for EM. It’s well noted that ice water immersions, although cooling, have a negative impact on the disease itself and can cause further complications such as ulcers. Like lab rats, we’re forced into experimenting with various medications, vitamins and herbal remedies due to our poor quality of life. The side effects are a whole different story. Chances are high a patient has wasted money on a wide range of creams that provided little to no relief.  A small percentage of people have benefited from formulated compound creams but none of them have worked for me.  To me that’s camouflaging the ‘real’ underlying problem, whatever that may be.  Pain patches are another source of mild pain relief but it does little for quality of life.  The Erythromelalgia Association (TEA) founding member, Dr. Jay S. Cohen, M.D., personally suffered with the disease and offered several medical and natural treatment options to explore.  Thanks to him, I take several supplements that assist in my daily survival. Dr. Cohen passed away on December 6, 2015.  His obituary did not state his cause of death. His passing was a major loss to the medical community and particularly sad for EM sufferers.

EM does not discriminate by age, nationality, or gender. It’s a tough disease for adults to tolerate let alone children.  Some EM children have never known a life without pain. We take for granted how simple life should be for youngsters – sleep, eat, learn, play, love. Imagine if every day were an agonizing struggle for your child?  Many adolescents endure painful flares during school hours, requiring their parents to pick them up.  Most of them are not able to participate in physical education class with their friends. The intermittent flaring makes it challenging to maintain good attendance. It often times forces parents to make the difficult decision of having their child home schooled. For all these reasons, engaging socially can have its own set of problems for many youths.


kids em

The picture featured below touched my heart on many different levels.  Not only can you see this little boy’s pain in his lower limbs but the background clearly shows an elderly couple’s empathetic stares.  No child deserves to feel that much agony during a simple trip to Walmart to see the Easter bunny.


I have EM in both hands and feet and sometimes my ears.  I suffer with chronic pain on a daily basis. As a result I’ve become a fraction of the person I used to be.  I once had been an extroverted, funny person who brightened a room with my contagious laughter.  Too much excitement now can cause a few hours of pain so I try not to overexcite my nerve cells.  My days are spent enduring sporadic flares, not knowing if one episode will feel worse than the previous. Sunlight used to be my biggest enemy but now I flare anytime, anyplace for no specific reason. Cooking, cleaning and holding my cell phone causes my hands to flare often. Walking for longer than 30 minutes can cause my feet to flare depending on the weather.  The swollen, fiery throbbing is indescribable. I breathe through the pain then pray it passes soonest. No specific drug has relieved my symptoms to date.

It would be a great morale booster to go one full day without pain.  But then I take a shower and typically the fire begins.  Possibly the fire waits until I turn on my blow dryer or curling iron.  Maybe I luck out and the fire holds off until a temperature change is triggered.  Eventually, the heat is on regardless of what I do. The fire walks with me wherever I go.  I’m reminded daily of my constraints when I walk in my closet to get dressed. I have lots of clothes and shoes I haven’t worn since my EM diagnosis.  A bulky sweater and flip flops doesn’t exactly go well together. Besides, heavy clothing can cause overheating and that’s a nightmare. One side of me says, “Get rid of those clothes and shoes. You’ll never be able to wear them again.” Then the hopeful side of me says, “By giving away those items you’re surrendering ALL hope for relief or a cure.”

It’s difficult for family and friends to understand this disease. Although they love us unconditionally and understand we’re suffering, who could comprehend the feeling of burning alive every day?  It’s hard for others to grasp this type of pain, depression, and lonesomeness.  Many of us mask our sorrows. I sometimes cry in the shower or when I’m driving in my car.  I feel like I’m watching my life wither away. EM doesn’t just affect the patient, it impacts their entire family.  Our condition limits any events our loved ones would ever want to plan with us.  Reality strikes knowing there won’t be any more hot sunny outdoor activities to enjoy.  A summer gathering now sends signals of great sadness because we can’t comfortably be a part of it. Will there ever be a time we can sit in the sunshine feeling the rays of warmth on our skin without pain?  Will a day arrive when we can go for long walks, hiking or bicycling again?  Those memories are quickly fading and being replaced with tears of loneliness. It’s unfair for families to hold back living their lives so we pretend to maintain a smile while observing from afar.  We’d love to physically do all the things they can but that’s impossible right now. Many of us are on disability while others struggle to get approved for it. I am still able to work. I get up daily and head to the office, finish my shift, go home, sit on the couch, eat, sleep, then repeat the next day. I have a fan on my desk (of course). I’m surrounded by the same walls day in, day out.  The routine makes me feel like I’m not living anymore.  I’m merely surviving.  The youthful, energetic person I once was is fading away.

I feel a sense of comfort knowing others are fighting this ‘fire’ with me.  I’m not relieved they’re suffering but I’m thankful I’m not alone. Our EM online support group of 1,000 members is the most amazing community I have ever been a part of.  Although it’s mostly comprised of women, many men and children suffer with EM. When an EM warrior is down we chime in to lift their spirits, letting them know we’re all in this together. Our warriors reside all over the world – USA wide, Canada, Norway, England, Scotland, Argentina, New Zealand, Italy, Sweden and France, just to name a few.

Whenever I feel down I’m reminded of reasons to be grateful. I dined in a restaurant one evening when a teenage amputee walked past me.  She was smiling and I thought to myself, “Wow, she is an inspiration.” During another dining out I watched a group of hearing impaired ladies sign language with each other throughout the evening.  On a different occasion I stood at a bus stop, feeling pained, when I saw a mother pushing her severely mentally challenged adult-child by in a wheelchair.  The mother had been smiling and laughing with her child and I felt joy in my heart. Once, in a department store I observed a wife assisting her blind husband through the aisle. I’m reminded by an acquaintance that was tragically injured in a skydiving accident and is now a quadriplegic. I came to realize we have plenty of reasons to smile.  We’re blessed to have our limbs (regardless of their malfunctions), mental well-being, vision, sense of taste and smell, and our ability to hear.   The goal is finding things we CAN do. Freedom is in the imagination. I enjoy writing when my hands aren’t flaring.  Going to the movies is enjoyable. It’s dark and cool inside so it makes me feel like an average, everyday human being.  The best things in life are FREE: Hugs, kisses, love, smiles, family, laughter, friends, good memories, and sleep.  Well, scratch sleep off the list. Most of us aren’t getting any unless we’re medicated. *sigh*

I find my strength in God, my spouse, family and our Erythromelalgia online support group. I believe a day will come when there is no more suffering. For now I just take it one day at a time. I’m optimistic for a cure. In the meantime, my hope is for a better understanding of EM and treatment options for those suffering with this dreadful disease.

~ Please help us spread awareness ~

This article was featured on the front page of The Huffington Post:

My other published blog on Erythromelalgia (EM):

Erythromelalgia (EM) Awareness Video: