Invisible Illness Awareness Week

Today is the first day of invisible illness awareness week.  I had hoped to have a blog per day, and even started jotting things down to write about over six weeks ago, but I never got further than the brainstorming stage.   The last month seemed to be a month of setbacks. Invisible illness awareness week is here and it looks as if the blog per day thing will not be happening.  At least not this year. 

That is the life of chronic illness.  You make plans. You think you have a reasonable enough amount of time and energy to accomplish said plans.  Your body attacks you.  Your plans get pushed aside for more appointments or for more resting time.  Things that are not absolutely urgent have to wait, and blog posts fall into the "not urgent" category.

I felt pretty frustrated when I realized that once again, I was not making my goal to blog every day of invisible illness week.  It's been something I've hoped to do for the last several years.  Yet, August and September inevitably come and seem to be months that are covered up with doctor appointments and sickness.  Yet, as much as I wished that I had been able to reach the goal of one blog per day, I realize how incredibly appropriate it is that I missed that goal due to my illness.  

There is so much about invisible, chronic illness that people can't not even fathom unless they've lived it.  I know many people probably read this and think, how hard can it be to write a blog?  I only have a few hours of productiveness a day.  In those few hours, I have to try to everything I'd want to do or have to do.  Sometimes things like doctors appointments take priority.  Sometimes I'm fatigued and don't have the concentration to write.  Sometimes I'm discouraged and don't have the heart to write.  It seems so easy, but it's not.

Yet even in this I know there's most likely a reason.  Maybe God hasn't fully revealed to me what to say on a subject.  Maybe someone out there doesn't need my blogs today but will need them later.  Regardless, life goes on.  And I'm grateful, because even though there are still so many things I am not able to accomplish right now, I'm still able to do so much more than I was able to do four years ago.  

I still hope to have a few blogs this week.  The beginning of this week is pretty busy, but hopefully by the end of the week, things will slow down enough for me to catch my breathe enough to sit and write.  If not, well, I'll just write when I can.  Perhaps I need to start writing for next year now! ha!

#MyInvisibleFight

“Everyone you know is fighting a battle you know nothing about.  Be kind.  Always.”

Everyday I’m greeted with a reminder of a battle I’ve already fought and won.  It’s such a simple thing, something most people probably don’t give a second thought about as they do it. 

It’s simply having the ability to get out of the bed in the morning. 

There was a time I couldn’t do that, that one simple action that starts everyones day.  I lost the ability for well over a year.  The blankets felt heavy and consuming, and I couldn’t lift them off my body.  I would try to sit up, but my abdominal muscles would refuse to pull me up; even if I somehow found a way to sit up, then having the ability to rise off of the bed with weak legs was yet another impossible challenge.  I had to sleep with my cell phone, just so that I could call if I needed to get out of the bed. If for some reason the cell phone failed, I felt helpless.

I feel extreme gratitude for every ability I regain.  There are so many things I’m doing now, that were once impossible for me.  I don’t look at the world the same way that I did before losing everything.  I still have more battles to fight; but the battles I’ve won are met with an extreme joy.

The theme for Invisible Illness Awareness Week (September 28-October 4, 2015) this year is “My Invisible Fight.”  It’s an incredible relevant name to what chronic illness sufferers everywhere endure daily.  We are fighting, in various ways, against our bodies and what they’ve done to us.  Some chronic illness sufferers are fighting small battles, and others are literally fighting for their lives, but we are all fighting for something. 

Many people outside of the chronic illness community look at the lives of those with severe chronic illness and think by their lack of abilities and accomplishments they must be lazy and not trying hard enough.  That’s one of the biggest lies I’ve ever heard.  In reality, we are sometimes fighting the hardest for things that healthy people take for granted.  Things that are huge obstacles for our bodies seem so ordinary.  For instance, getting out of the bed in the morning, opening up jars, putting on clothes, styling our hair, or taking a shower without feeling like we’ve just run a marathon.  We aren’t lazy--we are warriors.  We are fighting against bodies that have betrayed us on a moment-by-moment basis.  Healthy people don’t understand the fight, because they don’t see the person in the midst of the war.  They don’t see the frustrations, the tears, or the disappointments.  They don’t experience the full out grief one feels when they can no longer do something that is seemingly small.  It’s heartbreaking.

We also fight for our emotional health.  When everything is taken from you, it’s easy to become bitter.  Yet, some of the most inspiring souls I know are those who have literally fought for their lives and yet not stopped smiling.  We fight for joy.  We fight for contentment.  We fight to stay grateful in the midst of searing pain and crushing disappointments.  We allow what could completely defeat us to become better, more compassionate and loving people.  We allow what could drive us away from God, to strengthen and solidify our faith. 

By the great grace of God, I’ve won battles that once defeated me.  I still have so many more battles to face, to conquer.  I still have great fatigue, and there are still abilities I have yet to reclaim.  Low chairs are my enemy and handicap accessible bathrooms, aren’t accessible to me.  I can’t go up stairs, and many of the things I can do, I do with great effort and sometimes pain.  I won’t let my body defeat me though, because everyday I start my day with the reminder of what I’ve already overcome.

I don’t know who all is reading this blog; maybe you are also fighting a chronic illness; or maybe you are completely healthy.  Maybe you are at a point where you can’t physically get out of the bed; if so, I want to remind you not to give up, that you are doing a good job, and that you are a warrior.  If you can physically get out of your bed in the morning--then please remember this blog and praise God for that blessing.

September!

It’s September, which means there are many important days for the chronically ill community coming up.

First of all, September is chronic pain awareness month.  Chronic pain refers to any pain that lasts for 12 weeks or longer.  I’ve dealt with chronic pain everyday for over twenty years now, and I can say it can be completely disabling and difficult to live with day in and day out.  Healthy people cannot truly relate to chronic pain, as it is a pain you only understand if you actually experience it.  It’s exhausting and ongoing.  Chronic pain does not just “go away” and cannot be solved by simple pain medication; it’s often something you just have to learn to deal with.  I’ve lived with pain for so many years now, that even on a “good” day, I’ve had to accept that I’ll most likely be in pain for the rest of my earthly days.  There does need to be more awareness, because so many people with chronic pain have felt their pain minimized and ignored by friends and family members, making the physical pain become emotional pain as well. 

Another important day to me and my fellow myositis warriors is September 21^st, Myositis Awareness Day.  I am hoping if my body allows to blog a little more about what a life with myositis can looks like. Myositis awareness day refers to awareness for Inclusion body myositis, polymyositis, and dermatomyositis.  I have the form of juvenile dermatomyositis.

And finally, September 28^th -October 4^th is Invisible Illness Awareness week, where people fighting multiple invisible illnesses come together to increase awareness of the many invisible illness that a person may fight.  This week includes ANY illness that people would not know, just by looking at the person, that they have a illness.  This can be any illness, from diabetes to depression to lupus to myositis.  Every person’s story is different, and some my have mildly affected quality of life issues, while others may be fighting for their lives.  The point is, a person doesn’t have to “look sick” to be sick, and often invisible illnesses are all that more frustrating because they are not validated by others, and those with invisible illness lack the proper support from their peers and feel isolated.

Because of all of this, my hope is to blog more this month.  I’ve actually been wanting to blog more, in general, but some days it’s all I can do to survive.  I’m thankful to be continuing to improve, but even on my best days I only have a few hours where I can function and keep up with stuff like my blog!  I am hoping though, as I continue to gain strength, that blogging will become more consistent! 

Thanks for reading, and I hope all my readers enjoy the upcoming entries!

Embracing the beautiful

For You formed my inward parts;
You covered me in my mother’s womb.
 I will praise You, for I am fearfully and wonderfully made;
Marvelous are Your works,
And that my soul knows very well.

 My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the lowest parts of the earth.
Your eyes saw my substance, being yet unformed.
And in Your book they all were written,
The days fashioned for me,
When as yet there were none of them.

 How precious also are Your thoughts to me, O God!
How great is the sum of them!
 If I should count them, they would be more in number than the sand;
When I awake, I am still with You. – Psalm 139:13-18

Do not let your adornment be merely outward—arranging the hair, wearing gold, or putting on fine apparel—  rather let it be the hidden person of the heart, with the incorruptible beauty of a gentle and quiet spirit, which is very precious in the sight of God. – 1 Peter 3:3-4

I read not so long ago that we can tell what we deeply care about by what grieves our hearts.  There are many things that come to my mind, but one thing that entered my mind after I read this was the epidemic I see today—women who are chained to poor self-esteem and low self worth. 

One doesn’t have to look far to see it.  Sometimes their words are filled with self-doubt and self-hatred, and other times they say nothing at all.  Sometimes it is seen in their eyes, you can tell just by the way they look at you they are afraid to be seen and to be known.  It is a look I know well, because many times, I’ve seen it in my own reflection. 

The lies of the enemy

Every woman’s journey to such a dark place begins with a single lie, a lie that comes from the enemy of our souls.  He’s been targeting us since the beginning of creation, using his sly words to weaken us and draw us away from our Creator.  Don’t believe me?  It’s all there in the Bible--read Genesis and see who Satan set out to deceive first—Eve. His lies may be different now, but they are still lies.

I don’t believe I was born with low self-esteem.  In fact, if anything I was born with vanity.  I never seemed to doubt that I was beautiful.  It didn’t occur to me in the first years of my life that I was anything except beautiful.  While I’m thankful to let go of the sin of vanity, somehow I’ve found myself at the other end the spectrum.  It’s a sin to hate, so any form of self-hatred is a sin.  But do we really have to live in either extreme?  I don’t think we do.

The first lie I remember wrecking my confidence came after my diagnosis.  I went from a thin, frail and beautiful young girl to one whose body was completely changed and swelled up due to prednisone.  I doubled my body weight in six months.  I had no real control over this, as the medication causes the body to not just gain weight, but it also causes redistribution of body fat to places that are undesirable, particularly the face, back of the neck, and abdomen.  In other words, you don’t just gain weight, you gain it in a very odd, unnatural way.  My skin was also red, due to my illness, another factor I had absolutely no control over.  The doctor I was going to at the time was pretty heartless.  In effort to “motivate” me she told me that “you need to do sit ups more because little boys don’t like fat girls with cherry tomato cheeks.”  That moment, one comment, began a lifetime struggle with my body image and self-esteem.  How I wish I could go back now and tell my former self, “Stephanie, what she said is not a reflection of who you are, but it says a lot about the cruel person she is.”  But at the time, I didn’t have that wisdom and just took her cruelty as truth.  It was the beginning of many experiences that would send a message to my soul that I was worthless, unwanted, and ugly.

Finding the truth

My three-year-old niece is into all things princesses and dress up.  She is confident and radiant and secure in who she is, and it’s a beautiful thing to watch.

“I look wonderful!,” she exclaims. “I’m a princess!” 

I realized the other day that in her three-year-old wisdom, she’s living closer to the truth than I have been.

She is wonderful.  She is fearfully and wonderfully made.  And one day, we all hope she’ll come to know Christ, making her a daughter of the King of Kings, a Princess.  I love to watch her embrace and believe in herself.  The thought of her one day battling the lies that I’ve battled all my life, completely breaks my heart.  I don’t ever want her to lose her confidence, her light.  More than that, I don’t want to be a bad example to her in form or fashion.  I’m her “Aunt Stephanie.”  How I live has the ability to affect her. And I know it’s time for a change.

I refuse to continue living in the shadows of the lies I have mistakenly believed all of these years. 

Embracing the beautiful

Women were created as the crown of creation.  We were made in the image of God.  We are a special reflection of God and His character.  We represent His heart, His beauty.  We have value and worth.  We have immense value and worth.  Anything less than that—it’s a lie.  I may struggle with the lies for the rest of my life, but I’m going to do all I can to seek healing in this area.  I’m tired of living a life that is less than the best God has planned for me.  I’m not sure exactly what all God has planned for my life, but I’m certain that I can be much more effective in my purpose if I start embracing who He says I am, if I allow Him to take those broken parts of me and heal them into something beautiful.  I’m tired of embracing the lies; For the first time in my life I'm embracing the truth; I’m embracing the beautiful.

To all the ladies who are reading this—if any of this resonates with you, I strongly encourage you to seek healing.  It may be a long road.  I know I still have a long way to go, but I’m not giving up.  Actively seek healing.  Find every Biblical resource you can to overcome this area of your life.  I highly, highly recommend “Captivating” by John and Staci Eldredge.  Don’t forget, you are loved, you are special, and you have value and worth.

Trusting God in the Desert

The last five years have been, in many ways, the most difficult of my life. I can't and won't go into the intricate details-much of it is much to personal for a blog-but I can say the many setbacks and trials have left me with questions. 

A lot of questions, that seem to have no clear answers right now. 

Among the questions I wrestle with the most, is why I feel God has called me to be certain things, yet I feel no closer to living into those callings than I did when He first placed them on my heart. It makes no sense to me, and I cannot begin to understand it. Many times, I feel like I'm not fulfilling my purpose, like I've somehow failed God or myself. I don't understand it. 

But I'm learning that I don't have to understand it. 

One thing God has been repeatedly placing on my heart lately is that I don't need to cling to the promises I feel like He's given me... I need to cling to Him. There is a difference. Christ is the only thing we need to hold with closed fists, ever tightening so not to let go. Everything else-including the questions-we need to hold with open hands knowing the One who loves us and saves us will ultimately place in our hands what we need when we desperately need it. I recently read:

"Since God is my all-satisfying Treasure then what makes something good is whether it brings me more of God.

So when God promises that we will lack no good thing, he means we will lack nothing that would bring us more of God and we will have everything that would bring us more of God."[1]

I'm starting to realize how true that statement is, how marvelously simple and complex it is, all at once. If I thirst for righteousness, anything God grants in my life, good or bad, will bring me more of Him. That isn't just something that sounds good. It's a Bible-based truth-

"Matthew 5:6 Blessed are they which do hunger and thirst after righteousness: for they shall be filled. "

I'm also realizing that we are most hungry and thirsty in the Desert. The times in our life that seem dry and suffocating, those are the times God can use the most to satisfy our thirst and breath new life into us. We have a choice to let those times hamper our growth, or we can choose to wholeheartedly embrace them and allow God to work. We learn way more about deep trust and faith in the valley than we ever can if we only stay on the mountaintop. 

Right now, I definitely feel like I'm in a desert season. Yet, I don't resent this season the way I did a few days ago. No, contrary to what the natural reaction is to it, I'm actually grateful for it. It's created a deepening hunger and thirst in my life, and God has already been faithful to fill that hunger and thirst. I know I'm entering in to a season of growth, and I'm excited to see where that takes me. 

As for the questions, I'm starting to place them in God's hands. I don't understand everything that is happening in my life right now, nor do I need to understand. I don't need all the answers, because I already have the greatest Answer. He is with me in the desert. He is with me always. 

Link to "Desert Song"

http://youtu.be/CuNCtsm6YvA

[1] http://www.desiringgod.org/articles/gods-promise-for-the-disappointed