Myositis May

For the first time, Myositis Awareness is being recognized through the full month of May.  In the past, Myositis was only recognized for one day in September.  For all of us who have been fighting a form of Myositis—Dermatomyositis, Polymyositis, or Inclusion Body Myositis—this is a very important month. 

For over two decades now, the word “myositis” has been all too familiar to my life.  In December 1993, my life changed forever when I was given the diagnosis of Juvenile Dermatomyosits, the childhood form of the disease, at nine years of age.  I had been sick for at least two years at the time, going to doctor to doctor trying to find someone who would listen to and take my symptoms seriously.  I was always a frail child, and perhaps this disease was wearing on my body long before we knew, but at seven years old it started causing me to struggle in my everyday activities.  Since then, Dermatomyositis has been my constant and uninvited companion, following me around, at times with a vengeance, throughout my life.

Juvenile Dermatomyosits is a rare disease, thought to only affect around three to five children per million per year.  It’s unlikely that you will meet more than one person with my diagnosis; and some people do not know anyone with my diagnosis.  Even many doctors I’ve met through my life have not had a patient with the illness.  Having a rare disease is hard; you are often met with skepticism—even from medical professionals—of the validity of your illness and limitations. Being young and sick is especially hard, because as a child you don’t realize that the way you feel is unusual or abnormal.  I grew up thinking that pain was a normal part of the child experience, and even now I struggle to find a way to explain to my peers how my life differs from theirs.  Sickness has always been a part of my life, and I cannot remember what it feels like to be healthy. 

To many people, the word Dermatomyositis means nothing, but to me it means many things.  It means a life altered and broken by an illness no one should have to endure.  It means over two decades of suffering greatly.  It means painful muscles, a weakened body, and a skin rash that, at it’s worst, can feel like someone threw acid on my face.  I’ve had so much inflammation that my body has responded by creating calcinosis, meaning that parts of my body are filled with rock like deposits, which can cause pain, discomfort, and, in some areas, decreased mobility.  The weakness of my body has caused certain muscles to contract, and the contracture of my left arm cannot extend, and will most likely never extend again.  I’ve had so many people in my life doubt the severity of my illness simply because they’ve never heard of it—but make no mistake, this a severe, tough, difficult, and debilitating illness.

Along with the hard to endure symptoms, the only treatments available are harsh and strong.  I’ve been through a dozen different medications—not even counting medications like pain medications in attempt to manage symptoms—trying to combat this illness and get it under control.  Among them are steroids, chemotherapy drugs, and transplant drugs, all to attempt to kill the immune system that is actually attacking my healthy cells.  There is a deep lacking in medical solutions for this illness, and we greatly need more research on easier to tolerate medications for this illness.  The drug I am currently on—the drug I believe has saved my life while allowing me to have some quality of life—isn’t even considered a real therapy for dermatomyositis, which leads me to believe there are solutions out there that are not even being considered.

The prognosis of the disease varies so greatly between person to person, that it’s hard to know what to expect at diagnosis.  Some cases are easily controlled with medication and an individual may end up in remission, leading a life that is barely any different than someone who is healthy; the more severe cases are never overcome and prove fatal.  I fall somewhere between these two extremes, having some years that are better and some years that are worse, but I am considered chronically ill and permanently disabled.  Even at my best, the fatigue from the illness proved too much for me to be fully independent or able to work.  My body would give out after one day of activity, and even something as simple as a minor cold could weaken me to be bedridden for days.  At my worst, I lost nearly all normal function and ability to care for myself.  At twenty six, I had to rely on my mom as my caregiver to help me with even the most basic of tasks. 

Despite my many physical challenges, I am thankful for my life.  The disease has given me rare gifts—gifts such as perseverance, compassion, and strength of faith—that I would not have without it.  I also feel that one reason God put me on this earth is to be a voice for the JDM sufferers who follow me—to lessen the isolation they feel by educating others about this illness.  My hope is that Myositis May will create increased emotional support by peers; more funds and research on new and innovative treatments; and more doctors who are properly educated in treating dermatomyositis patients.

Hope Heals Book Review

Today is "HOPE HEALS" day!

The book is officially in stores.

And today it reached #1 in sales on Amazon's Christian Living Books!

Jay and Katherine Wolf, authors of "Hope Heals"

and their sons James and John.

“Hope Heals” is the true story of Jay and Katherine Wolf.  They were a young married couple with a six month old baby, when they faced the greatest challenge of their lives.  When they were both only 26 years old, Katherine survived a massive brain stem stroke, and Jay became her primary caregiver.

The book tells the story of the seven years past her stroke, in alternating voices from Katherine and Jay.  It is interesting to read the challenges they each faced in the days following her stroke, both greatly affected by it in very different ways.  They discuss everything they went through personally as well as a family during the stroke, the recovery, and after coming home to adjust to their new normal.  This story is about two warriors facing the greatest battle of their lives, trusting and submitted to a God who is even greater than the battle that they face and bigger than their devastating circumstances.

I highly recommend that every person going through suffering read this story.  When I say suffering, I mean suffering of many kinds—from physical sickness to divorce; I’ve heard so many people greatly moved and comforted by this story.  It’s incredibly moving to see two people go through such a massive change in their lives, and yet stay anchored to their hope in Christ and to each other.  After reading this book, your suffering may not change, but your perspective on that suffering will.  Their hope is contagious, and it definitely encouraged me in my own suffering.

I also highly encourage anyone who is married or even single with the desire to marry to read this book.  This is one of the most beautiful pictures of a covenantal marriage I’ve ever seen.  Their love for each other during a situation that would surely cause many people to divide is deeply inspiring.  They clung to their faith and each other in a way many people would not in such circumstances.  They truly do their best to live out an Ephesians 5 marriage, and what a beautiful example they are to fellow believers. 

In short, Jay and Katherine’s story will encourage your heart.  Jay’s love and devotion to Katherine will inspire you to love the ones around you more; and Katherine’s strength and perseverance will inspire you to hold on through whatever trial you are going through.  Do not miss out on a chance to be blessed—on April 26^th, 2016, buy Hope Heals and a box of Kleenex—because this beautiful story will move you to tears!

For information on where to buy, visit http://www.hopehealsbook.com

The most painful season; Five Years Later

“We pray for Your mighty hand to ease our suffering

All the while, You hear each spoken need

Yet love is way too much to give us lesser things

'Cause what if your blessings come through raindrops

What if Your healing comes through tears

What if the thousand sleepless nights

are what it takes to know You're near

What if trials of this life

are Your mercies in disguise”

Blessings by Laura Story

Five years ago, I endured what would become the most painful season of my life.  I hope one day to post more about the physical difficulties I faced in that time, but five years ago in March, I endured my first real romantic heartbreak.  Because of that, every year since, when spring comes, I always have a few moments where I look back and pondered that time in my life, and what I find with each passing year is that things look incredibly different in hindsight.

I’m hesitant to share things this personal online, but for some reason I can’t get the following words out of my head and my heart without sharing them.  Because it is so personal, I’m going to try to write this more from the perspective of what I’ve learned with only the necessary details to protect his privacy and mine.    The reason I’m writing this is because I know someday, someone may stumble upon this enduring the same pain and find solace in these words.  Or perhaps they are facing a different kind of pain, yet this will still comfort them.  I also write because I want to remind myself that God is faithful, even when our prayers are answered differently than we hoped; that God is faithful, and that even the darkest periods of our lives don’t remain dark forever; and that God is faithful to give wisdom in our heartaches, even if we don’t see it at the time.  I want to make it clear that I have forgiven him for the hurt he caused me and I truly hope he’s grown since the days we knew each other, but that does not negate the fact that it all had a deep impact on my life. 

My disease went rampant over the course of several years, and in 2011 my body pretty much gave out on me.  I started being unable to do this simplest of tasks.  The extreme fatigue and wear and tear on my body seemed to bring light to things that were already broken—including my first romantic relationship.  At a time when my world was literally falling apart, a person I’d come to count on, walked out of that world when it proved too much for him.  I was devastated.  Yet, I can see in hindsight that what felt like abandonment was really God’s deliverance.

Now, five years older and hopefully many years wiser, I can see how naïve I really was at the time.  My first love had come to me much later than it happens for others—I was twenty-three on my first date—which is probably one reason I gripped too tightly too it even when I knew somehow, deep down, this was not the right fit.  In my hopeless romanticism, I thought the fact that we were each other’s first loves was a beautiful, wonderful thing; but in reality, it was really one of the many reasons the relationship was so flawed.

As I’ve grown I’ve realized, I don’t want to be my husband’s first love—I want to Jesus to be His first Love.  I want him to be more committed to God that he even is to me, I want him to pursue God harder than he pursues me; for if he is doing these things, ultimately he will desire to please God and love me in the way he is called to love me, as Ephesians 5 so beautifully describes it.

One of the biggest mistakes singles can make, is that they try to make the person they are dating their savior.  The problem with this is that we already have a Savior who has overcome the world, and we don’t need another one.  Not realizing this can cause us to slip into idolatry if we are not careful, without us even recognizing it.  If God has marriage in His plans for our lives, we need a helpmate, not a Savior.  So many men and women seek this bond to validate themselves, and that’s always a disaster.  I saw how destructive it was to lean too heavily on him; but also how destructive it was for him to lean to heavily on me.  I was not made to be a man’s Savior, but his helper; as a Savior, I would surely fail, but I’ve realized in the last five years, I have every gift within me to make a good helper. 

That said, another thing I think we neglect to think about in relationships is we don’t focus enough on Spiritual compatibility.   I asked some very important questions early on, but I realize now that I should have asked more and deeper questions. Two people can be true believers and have two totally different views on what marriage will look like, due to the fact that everyone interprets things differently and everyone is at a different maturity level in their faith.  We have to ask the hard questions when it starts to get serious at all, to confirm if this is the person God wills for us to be with.  If they are not, we are wasting each other’s precious time and hurting each other in the process.  Some questions I intend to ask in the future are:  Is this someone who truly believes scriptures like Ephesians 5:18-33 or Colossians 3:16-4:1?  What do they think, feel, and believe about those verses?  How do those pictures inspire or encourage them in their future marriage?  What does Christ-like leadership look like to them?  Are they someone who is going to pray with me, encourage me through scripture, and invest in me Spiritually?  Do they bring me closer to God, or do they try to stand in the way and be closer to me than God?  Do they support my individual goals on Spiritual growth or are they jealous of the time I spend in the Word because I’m not spending it with them?  Do they make an effort to grow Spiritually themselves?  The fact is, who you marry is one of the most important decisions in your life and Spiritual compatibility should be at the top of the list to a believer when choosing their spouse. 

In hindsight, I can see that everything I learned in that relationship and the heartache that followed was worth it.  Wisdom is often hard earned and stained with tears.  I want anyone out there who may be going through something similar to know, this is not the end of your story but a perhaps a new beginning to the next chapter in your life.  Pray and seek God through His word; trust that there is purpose in this season.  Five years ago, I could never imagine that experience would be anything but a dark memory; but as I look back in grace God has brought even that darkness to light.  This may seem like a detour in your life, but it is not—it’s a divine path God is leading you on and if you trust Him, He will not let you down.

The last five years haven’t been easy; and I at times wonder why I feel such a strong calling to marriage when guys are not exactly beating down my door.  Yet, I feel like in this season, which in terms of dating and marriage, has been a waiting season—I’ve grown more than I could have ever expected and I thank God for that.  At the time of my breakup, I thought it was a cruel joke that it happened in Spring when everything was alive and new; now I see that it was incredibly appropriate, because in that ending, there was also a beginning—a beginning to a new, wiser and better me.

Hope Heals—How I became part of a book launch

I just finished reading my copy of “Hope Heals” by Katherine and Jay Wolf, yesterday.  I will be writing a full review sometime soon.  I want to make sure I do the book justice and I may even reread the book before I write my full review! 

In the meantime, I’ll tell you this much—they have an amazing story and I think everyone can learn from their hard earned wisdom.  On April 26^th, you need to buy a copy and a box of Kleenex!!!  (This book is one of the few books I’ve read that I think could even make a grown man cry!)

I’ve had some people who have asked how I came to be a part of this launch team.  I thought, before I share my review, I should share my story of how I got involved!  I also will be sharing a way YOU can help us launch this book at the end of the blog. 

I cannot tell you the exact date that I heard of the Wolf’s story.  I know that it was after I was dealing with my greatest suffering.  I had survived the worst my illness had to throw at me; but I still had so many great challenges to overcome, so many abilities to regain (some abilities that I’m still fighting to regain!).  I was thankful for the fact that I had survived, but unsure how I could continue to fight.  I was weary.  As I was scrolling down facebook, I saw where Joni and Friend’s ministries had shared a short film about a young couple in which the wife had survived a massive and nearly fatal stroke.  (The link is actually here—so I guess I heard their story first in December 2013-- http://www.joniandfriends.org/blog/jay-katherine/ )

As I watched the story, I couldn’t help relate to my own suffering.  Though there were many differences, I could see many similarities to my own story.   I too was young, in the age range when most people have no realm of physical suffering, having to relearn physical tasks most twenty-somethings give no thought to having to lose.  Yet, Katherine had to relearn things—like eating—that I had thankfully never lost.  I found myself thinking “the same God who brought her through her suffering; is the same God who will bring me through mine.  If she can find the strength to rely on Him, so can I.”  On top of that, I was so encouraged by the way Jay loving served her and helped her as her caregiver; the Christ-like love in their marriage was so vivid and beautiful, in many ways more beautiful because of their suffering.  Though I didn’t know them personally, and we were on opposite sides of the country, I somehow drew from their strength and courage. 

Because their story touched my life so much, I signed up for email updates.  I found out that they had begun a ministry to help other stroke survivors, as well as other people who were enduring suffering of all kinds.  “Hope Heals” was the name, and it was based on Hebrews 6:19—“Which hope we have as an anchor of the soul, both sure and steadfast”…they had discovered in their suffering, and the message they wanted to share from their suffering, was that we as Christians have an unshakable hope that isn’t determined by our physical circumstances; and that our Hope heals us Spiritually, even when physically we may have permanent scars and disability from our suffering.

On February 18 of this year, I received an invitation to fill out a form to join their launch team, for the book they were publishing that shared in detail, in alternating voices from Katherine and Jay, everything that they went through personally and as a family during and after Katherine’s stroke, and how they served a God who is bigger than their devastating circumstances.  I was in a hurry that day, and honestly felt like I was probably ill equipped to be a part of this launch team because I’m not the best salesman, but I could not ignore the tugging in my spirit that I needed to fill out and enter that form right that very minute.  Much of the form included the primary information—name, address, etc—but there was one box where you were supposed to include why you wanted to be on the team.  I had so little time, and wasn’t sure how much to include (after all they’d be reading A LOT of these) but I tried to briefly explain what their story meant to me and why.  I didn’t know much about the selection process but I knew I would hear on or around February 22^nd. 

February 22^nd was kind of a busy day for me, and I didn’t give much thought to it until that night as I was getting ready for bed.  When I realized that I hadn’t heard from the launch team, I assumed that must be I wasn’t on it.  However, it came in sometime after midnight that I was on it—and when I read the email I was ecstatic!  I also found out that they had to shut down applications early because the response was overwhelming. This means had I waited until the next day when I was less in a hurry, it would have been too late! 

This experience has already meant so much to me.  I believe in the power of their story, I believe in the Hope of Jesus that brought them through this difficult time.  The launch team packets were so gracious, so personal, and being the avid reader that I am, I get giddy when I see “advanced readers copy” on my copy of the book!  I’ve been an avid reader for as long as I can remember, and yet this is the first time I’ve had a chance to be a part of something like this launch team, to actually get to be among the first to read a book!  On top of that, the launch team members have been able to share their stories of hope within our group, and those stories have been a blessing to me that I didn’t expect when I signed up for this journey.

If you are interested in their story and would like to help them get this book of the ground too, I have a way that you can help!

Pre-order the book now and those sales will all be counted toward the opening week numbers (on April 26th), just like opening weekend box office numbers for movies. The more sales early on, the more likely there will be future printings of the book, preferential placement in book stores, and mainstream exposure on book lists and in media. To say THANK YOU for pre-ordering they have compiled some really fun goodies if you order 2 or more books, but they're only available for a LIMITED-TIME! 

Today the launch team was informed that the Amazon preorders are doing GREAT (praise God!) but their publisher has told them that Barnes and Nobles is lacking in preorders.  The amount of pre-orders at barnesandnoble.com will determine the amount that they stock in store and how prominently they display the books in their stores.  I personally feel like getting this message of HOPE out in a non-Christian bookstore is extremely important.  Can you imagine how many people may be going through situations similar to the Wolf’s that may need to hear this story, who may not travel into a Christian bookstore, but would stop by Barnes & Nobles?  Let’s give them a chance to hear this story about a life changing HOPE and let’s get these preorders up!  Also, at less than $18, it’s one of the better prices for preorders, so that’s so if you want to buy the book anyway, so you win in this deal too!

If you want to purchase from Barnes and Nobles, please head over to

http://www.barnesandnoble.com/w/hope-heals-katherine-wolf/1122239244?ean=9780310344544  and put in your order. 

If you order at least TWO copies— a copy for yourself, and a copy for a friend—you will qualify for free shipping at B&N and for some goodies through Hope Heals.  There are even more incentives if you choose to order 4 or 8 books!

So after preordering the book, head over to www.hopehealsbook.com and enter your purchase information, and you will even get a PDF of the book to read right NOW! 

Thank you so much friends!

A note to my single friends on Valentine's ...

"We don’t have many accounts in Scripture of how various couples met and married, but we do have the stories of Rebekah and Ruth to consider. These were women of godly initiative in the fact that they noticed the needs of others around them and they worked hard to meet them. When the Lord decided to introduce them to their future husbands, these two women were serving, not hunting. We can trust God with our desires, even when we don’t see any activity and we’re not receiving any answers to our prayers. For this reason, I find great comfort in two intimate, poignant accounts of how the Lord blessed single women in the Bible.

We must never forget that God’s silences are not his rejections.

 They are preparation for a greater revelation of him.

What a tender, compassionate, and personal God we serve! We have to keep that truth about his character foremost in our minds as we wait on him. It’s never easy to do. We will be tested and tempted in that wait. We will also grow in trusting God with this hope deferred if we do not succumb to bitterness and unbelief."-`Carolyn McCulley

I used to hate Valentine’s Day.  Not just because I was single, but because I always seemed to have the worst luck on Valentine’s Day.

The first Valentine’s Day I remember getting a gift, was third grade.  That was great…until I realized he’d given several other girls the same gift.  Even in my 3^rd grade head, that did not seem right!  It definitely did not make me feel special and unique to him, but instead like I was just one of many. 

Then there were the many Valentine’s that were just lonely, because my illness made me isolated.  I felt very left out of Valentine’s all the way around.

The saddest Valentine’s day I can remember was when one of my friends moved away on Valentine’s, at a time in my life where I only had a few friends.  I’m sure there were other Valentines that were equally as hard that I can’t remember at this moment.

When I finally had my first relationship, I thought “this is the year I’ll have a GREAT Valentine’s Day”….what happened instead is that we had our first, really terrible fight.  Of the three Valentine’s I had a “Valentine”, two were absolutely miserable.  There are worse things than being single on Valentine’s, and dating someone and knowing you are with the wrong person is one of them.  Trust me.

Valentine’s Day can be really hard on the single, especially those of us who feel called to be married.  It seems like a reminder that we are single.  For me, I doubt my calling and it can quickly unravel to a crisis of faith if I let it.  And yet I remind myself, that I must trust God with this, and hope that in time, I’ll have some answers to the questions. 

I’ve found in recent years, this day doesn’t have to be a hard day. I’ve been blessed the last two years to spend time with family and friends over Valentine’s weekend.  Last year I went to a movie—the first movie I’d been to in at least 4 years—with my mom and two friends I grew up with; this year, I was able to spend some time fellowshipping the Saturday before Valentine’s with some friends God brought to me in more recent years.  It reminds me that all love should be celebrated, not just the romantic kind.  And instead of heart of bitterness and confusion, I have a heart of gratitude and joy.  The latter is much better.

If you are currently single today, I want to share some things the Holy Spirit has encouraged my heart with today—these are things I feel are beneficial to us whether we are single for a lifetime or single for a season.

Trust that God’s plan and timing is perfect—while we may not see the reason for our singledness, God is Sovereign and His Will is perfect.  He has a reason for this season in your life, whether it only last a few more months, a few years, or never changes.  Trust that He is good and that He doesn’t withhold the best from His children.  Allow Him to use you and be glorified in you now.

Serve others today. – There are people all around you hurting, in need of love and grace.  Whether married or not, we are blessed with opportunities and the ability to show others Christ like love today.  If marriage is in the cards for us, learning to sacrificially love and serve others today, will enhance and strengthen our relationships with our spouses tomorrow.

Invest in yourself.—While we need to humbly love and consider others better than ourselves, we still need to “tend to our own garden.”  What in your life do you need healing from?  What areas do you need to grow in?  How can you become more Christ like?  Asking ourselves these questions and seeking the answers does not make us selfish, but instead helps us to be full enough and strong enough to pour our lives into others.  And once again, this will benefit us if marriage is part of God’s plan for our lives.  I think it’s impossible to go into a marriage without at least some baggage—we live in a broken world with broken people and we all have a past where we have been hurt by both our own sin and the sins of others—so we always, in some way, carry that with us.  However, I think with time and work, we can make the “baggage” more of a carry on and less of a multi-piece set.

Remember your value.—I’m preaching to myself here, because I struggle the most with this one.  A friend of mine recently posted that the worst part about being single on Valentine’s day are the lies we tell ourselves.  When we aren’t “chosen” by someone, we can feel that it says something about our worth and value, and I think woman especially struggle with this one.  On those moments we feel overlooked, we have to remind ourselves that we already have been chosen—that God sent his Son to die in our place, and that He chooses us to see His glory displayed.  Not only are we chosen, but we are accepted, valued, cherished, adored, and loved, and that will remain true even if we are single for the rest of our lives.  And once again, if we one day marry, finding our identity and worth in God will take a whole lot of pressure off our spouses to feel like they need to fill that void. 

Most of all, I want you to know you are loved.  By Christ and by me. 

Happy Valentine’s Friends!