Archive of ‘Health. Chiari, Ehlers-Danlos, POTS, Mast Cell, PANS/PANDAS’ category

How Can I Go On Like This? Abide With Me

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“What surgery meant to *Monica and what it meant to almost anyone else were two different things entirely. For *Monica, a single surgery was more like a fitting for a dress, or the rearranging of living room furniture: it was only a step towards something else. She never gave up believing that there would be a final moment, a last surgery, a point at which her “real life” would begin.” Ann Patchett, Truth and Beauty (*Lucy was Ann’s dear friend)

I need another surgery.
I am thirty-nine years old.
This will be my twentieth surgery.
This will be my seventh neurosurgery.

This IS my life.

In January I asked God to let me go just one year without a scalpel.
I made a list of 40 things I wanted to do before my 40th birthday on November 5th.
I created a beautiful vision board.
I planned out the finishing of Gauntlet With a Gift by April 30th.
I arranged Dan and I’s Tucson trip in February.
I booked a beach house in Corolla for a family vacation the last week in May.
I registered for a writing conference at Princeton in June.
I dreamed of a long July weekend in my Shenandoah Valley hometown with a childhood friend.
In August I wanted to make good on a five year broken promise to Delaney to visit NYC together.
I penciled in a Cleveland Indians game and a concert on the lawn at Blossom before summer’s end.
I booked a hotel in Columbus for my friends and I to attend the Country Living Fair in September.
In late October I intended take my girls to Fallingwater as the leaves turned.
And I wanted a birthday party. A big one.
More than anything I purposed in my heart I would not NEED you.
I would not fund raise.
I would not talk about our medical debt.
I would not blog about my day to day health struggles.
I wanted to do something new here.
I wanted to shine Hope.
I wanted to talk about healing.
I wanted to share other’s stories.
I wanted you to know all your praying, all your giving and all your caring tangibly changed something.

My trip to Maryland last week revealed the reason I cannot get through twenty-four hours without a debilitating headache. It makes a crescendo around 2 pm every single day, and I crumble.

I have all different kinds of headaches, and I am able to tell you about them in detail.

A pressure headache is the feeling my skull and brains will explode. This typically comes from weather changes. I have a lumbar shunt sewn in my abdomen that snakes around to my spinal cord. Theoretically it removes excess cerebral spinal fluid building up and empties it into by belly to be absorbed by my body but often it is not enough. This headache makes me cry. I hold my head in my hands while I curl up in a ball and beg God to make it stop.

A “brain on fire” headache comes from illness like Strep or a wicked mast cell attack from something like bleach or a lilac or your perfume. This headache makes me certifiably insane. I am mean. I am crazed. I am desperate. Praying is almost impossible.

A migraine is like an ice pick in the front of my head spreading pain all over. Any light or noise makes it worse. I am nauseous, and I often throw up. I know it will last for at least twenty-four hours but often I wake up the next day with it. This headache makes me sad.

The headaches above come and go but lately have been layered on top of a never ending, something is smashing my spinal cord, seizing from the back of my neck up my head and over the top of my skull, buzzing and numbing, I cannot live like this pain. I have not suffered this kind of headache since my brain decompression and skull to C2 fusion in November, 2011. It began in Tucson. I explained it away as travel and hiking and washing and flat ironing my hair every day. The popping and grinding of my cervical vertebrae not already fused escalated. I wake and think it is manageable but rotating my neck at all, looking up or down or lifting anything ruins me. This headache makes me cry, “How can I go on like this?”

A month or two in I knew. A scan was just the calling card for a sure thing. I wondered how much damage was being done. I worried about a syrinx forming. I flipped ahead on my calendar to see what would need to be canceled. I saw another season of my life and my family’s life swallowed up by a nightmare deja vu.

I need a fusion of C5-C7. There are two different options for this surgery, one going in the front of my neck, removing the hardware from my C3-C4 fusion I had in October because it is solid and then fusing the three vertebrae below with hardware and bone slurry. The second option is more invasive. I would be cut in the back of my neck and the C5-C7 would be fused posteriorly as well as adding extra stability with bone slurry from my C4-C5 and my C7-T1.

My surgery is scheduled at Doctor’s Community Hospital in Lanham, Maryland on Wednesday, June 24th.

Like every time before I have no idea how we will do this. There is a $5,200 deposit. There is more travel and more hotels. Dan will take off work. The girls will stay here with family. Their summer story will be held in place by the bookends of their mom suffering and trying to hold on until surgery and their mom recovering from and trying to heal after surgery.

This is their life.

I only wanted one year.

How can I go on like this?
How can they?

I’m sitting here in my “nest” chair with both great room windows open. The early evening sun and breeze move like skilled dancers in the woods behind us creating the backdrop and the lighting for a concerto of bird songs. A daddy and mommy cardinal are building their home in the orange blossom tree along side our deck. They take turns swooping in with new materials for their sweetly thatched hideaway. By the time the delicate flowers flourish their precious eggs will be be nestled safely to incubate and hatch new feathered babes. If I look long enough I can see our grass growing greener. I witness bright yellow dandelion heads morphing to puffy white seeds. If I listen closely I can hear leafy buds on our deciduous darlings opening fuller than even the moment before. The tulip tree outside my kitchen and sun room windows finally risked to bloom. The petals are a graduated palette of blush to rosy pink spun like the softest silk. It is the maid of honor to our flowering pear tree, a bride wearing the most intricate lace gown. This is our third spring in this miracle house. When you are gifted a view of seasons changing over and over again from the same looking glass you begin to let yourself feel at home. If you know our story you know my heart. I thank God every day for this place.

My dear Amy Carmichael wrote these beautiful words:

“We say, then, to anyone who is under trial, give Him time to steep the soul in His eternal truth. Go into the open air, look up into the depths of the sky, or out upon the wideness of the sea, or on the strength of the hills that is His also; or, if bound in the body, go forth in the spirit; spirit is not bound. Give Him time and, as surely as dawn follows night, there will break upon the heart a sense of certainty that cannot be shaken.”

Tonight I am asking God for certainty that cannot be shaken.
Again.
Without it how can I go on?
I will trust.
I will abide in Him.
He will abide with me.

This hymn sung by Indelible Grace has been one of my favorites since I was a child. It was written by Henry Francis Lyte in 1847 while he lay dying from tuberculosis. He survived only a further three weeks after its completion.

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I’m Not Sorry. Gauntlet Story Feast

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RachelAllison1

I was introduced to this week’s Gauntlet Story Feast writer, Rachel, through Sam Re’s story published two weeks ago. Rachel’s book, The Reality of Chronic Illness is an achingly beautiful account about what it’s like to live in these broken bodies.

I’m Not Sorry
By Rachel Allison

I’ve been sick for three and a half years now. I’ve been through a lot. I’ve endured harder times than I knew were possible. And I’m not out of the woods yet. We believe my worst is behind me, but I’m still chronically ill and the road to recovery is long.

This journey has been emotional and spiritual as much as physical. Perhaps even more so. I’ve come so far from where I started and God has used this illness to grow my heart and faith in amazing ways. I still have scars, I still cry, I still have days where I wish it were over, and I still struggle. But the way that I trust God now is so much greater; the peace that I have is beyond words. The blessings have been just as overwhelming as the pain ever was.

Lately I’ve begun using this journey to bring understanding for those also fighting chronic illness. I’m sharing photos of the reality of my life to shed light on the real, raw facts of what it looks like to live with chronic illness day in and day out. The response has been astounding and I am beyond blessed, but also torn by some responses. The love, support, and sympathy of others means so much to me and I am in no way ungrateful, but I’m continually met with the response, “I feel so bad for you. I’m so sorry.” And that pains me.

I don’t want you to feel sorry for me. I don’t feel sorry for myself. I’m not sorry that I’ve endured this. There’s a fine line here that I need you to understand. Your compassion, understanding, patience, and sympathy means so much to me, whether I know you or not. I want people to understand what I’m going through. It’s hard when people don’t. And I understand that when people hurt it’s only human to hurt for them and with them. I’m not asking that you don’t sympathize with me on the rough days, but please don’t be sorry that this is my life.

My life is so blessed. My heart is so full. I would not trade these past years for the world and I’m not sorry that they’ve happened. I am in a season right now of being astounded by the blessings flowing from my illness. Without this illness I would never love like I do or be loved like I am. Without this illness I couldn’t reach out in such a profound way. Without this illness I wouldn’t know my God like I do. Without this illness I would not have the peace that I do, nor the understanding. Without this illness my faith would be so much weaker, my life so much emptier, and my heart so much darker.

For the longest time I felt cheated of the life I “deserved.” The life everyone else had. The growing up, a driver’s license, a job, moving out, a high school diploma, going to college. To me, that was life. A sign of life. A sort of “rights of passage” to adulthood. I put my identity in my academic standing. I wanted to excel, to be better than average. But chronic illness stepped in and now I’m searching out the easiest ways to complete the required tasks in order to graduate. This isn’t me. I don’t look for the “easy way out.” But the truth is that I’m simply not able to perform in school like I could before chronic illness. In order to get the same grade I did before I have to push myself so much harder than I ever did. And for a while I really struggled until I finally realized that I was putting too much of my identity in that.

Is it wrong to push yourself? No. Is it wrong to strive for excellence? No. It is good character to do your best in all you set your hands to; it’s not only good character, it’s a Christian attitude. And I will finish what I set out to do. I will receive my diploma, but it’s okay if it takes me a little longer or if I don’t do extra credit work or if I have days where school simply isn’t an option. Why? Because I am chronically ill. And that’s my life.

I understand that most people should graduate and go to college, but I’m not most people. I can’t be most people. And I don’t have to say no to those things, I just have to let go of what’s “normal” in that regard. I’ve let go of “normal” and it’s beyond freeing. With God’s help I will graduate and I will go to college, but I don’t have to do it like everyone else does. Most importantly, my identity isn’t found in whether it happens or not.

I want to get better, but I’m at peace with the journey I’m on. This is where God has me and it’s so much richer and more fulfilling than any of my dreams. I haven’t been cheated, I’ve been blessed. I’ve had to lose what I considered to be life to find out what life really is. Because health, momentary happiness, academics, and jobs are not life. You can have those things and not know life. I would rather face this every day and have these blessings than be counted successful by the world’s standards and have no peace. The wealth of God’s goodness flowing through my life outshines any achievement I could ever make and it’s guiding me to achieve things I never thought possible.

So please don’t be sorry I’m enduring this. I know you mean well, but in my ears those words sound as if you’re saying, “I’m sorry you’re so blessed. I’m sorry God is so good. I’m sorry you have to be loved by Him.” Instead, love me with a heart that says, “I know this hurts. It’s okay to cry. Let’s hold on to each other and do life together and watch God make beauty from this pain.”

Because I’m not sorry that my life is more beautiful than I ever could have dreamed.

*Since this post was first written on March 28th, 2014 I have continued in my recovery, graduated high school, and published a book documenting my life with chronic illness. You can order The Reality of Chronic Illness here.

RachelAllison2

About Rachel:

Rachel Allison is a nineteen year old writer and photographer, living with Adrenal Fatigue (Chronic Fatigue Syndrome) and Dysautonomia since November 2010. She’s a lover of details, creativity, truth, understated elegance, words, and cheesy humor. She lives life with a passion for learning and a deep need for the God who created and cares for her. She blogs about life, faith, and photography at rachelallisonartist.com.

If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

Photography by Rachel Allison. Used with permission.

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What Kind Of God?

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IfGodisGood
“What comes into our minds when we think about God is the most important thing about us.”–A.W. Tozer

I didn’t want Gauntlet to be a treatise on the sovereignty of God. There are plenty of really good books, most of which I’ve read, attempting to explore the why and how of God’s control over the big and small in the universe and in our lives. I just wanted to write our story and let my own struggle with and eventual acceptance of this truth to shine through. Over the years I’ve blogged very candidly about the ways I’ve grown to not only believe but cherish the specific providence of God. People have questioned me, and I have tried as best I can to explain what my feeble mind understands about how His ways are higher than our ways and why I wouldn’t want it any other way. As I began posting other’s stories in Thursday’s Gauntlet Story Feast I’ve received emails and messages asking, “How can you have endured so much pain and loss for so long and still say it comes from the hand of a LOVING God who has planned it all from the beginning? How can you bless His name and give Him praise for even these bad things?”

One of the greatest struggles I’ve had since I was a child is reconciling theology taught to me from a young age, some very right but taught in a wrong spirit and some clearly wrong, with my own reason, the pull of humanism and all kinds of other religions that sell a different God than the Bible, and TRUTH. Yes, a dirty word, but I’ll say it. The above quote has been critical to me these past years as I have grappled with the question asked since the fall,

“What kind of God…?”

I could go straight to Job. It is perhaps the clearest picture in Scripture of the behind the scenes workings of God allowing great trial into the life of a man who was “blameless.” I cling to this narrative as if it was my own. It is hard to read, but it sums up the before and after so simply, “The Lord gives and the Lord takes away. Blessed be the name of the Lord.” (Job 1:21)

I find it more challenging to look at God’s sovereignty in places like Matthew’s gospel account of Christ’s birth. We seem to gravitate to and focus on parts of the stories that make our hearts swell with emotion. Every one loves a choir singing of peace on earth, goodwill towards men and a baby that doesn’t cry. The miracle of the birth of Christ has been read through time, embellished and romanticized, sung about in carols and celebrated by many who never really desire to understand the rest of the God who WAS the very human baby Jesus born in the manger so long ago. Mary is celebrated. Joseph was the best “baby daddy” ever. The wise men and the shepherds are heroes. Truly, there was so much more going on there that night than the nativity scene we set in our homes and altars.

I cringe when I get to the section Massacre of the Innocents in chapter 2, verses 16-18. I know it is there, but only because Herod is generally told as the bad guy in this epic, and He wanted Jesus dead in the off chance he really was going to become the literal King of the Jews. I don’t remember anyone ever preaching about these verses in an expository way or focusing on them at all. I think we always just kind’ve stop when Joseph whisks Mary and Jesus away for safe keeping in Egypt and then fast forward to Christ’s idyllic childhood in the carpenter shop once they return. Not much else is told to us until we get into the thick of His earthly ministry leading up to the greatest sacrifice, His death on the cross for our sins.

Here are the verses so you don’t have to run and look them up:

“Then Herod, when he saw that he was deceived by the wise men, was exceedingly angry; and he sent forth and put to death all the male children who were in Bethlehem and in all its districts, from two years old and under, according to the time which he had determined from the wise men. Then was fulfilled what was spoken by Jeremiah the prophet, saying: ‘A voice was heard in Ramah, lamentation, weeping, and great mourning, Rachel weeping for her children, refusing to be comforted, because they are no more.'”

What kind of God needed to allow every other baby boy to be murdered to fulfill His saving plan? If Christ’s death on the cross was such a great sacrifice then what was this? Every single family with a baby boy two and under in the region had their sons snatched from their homes and brutally killed. We start in Matthew and separate the Old Testament law from the New Testament and Grace. There are so many beautiful truths about how the saving work of Christ changed how we access God and how we are forgiven. Praise God it is finished. There is no more need for continual shedding of blood and sacrifices on man made altars. So why this great sacrifice of all these lives as soon as the Savior finally enters the world? Is it just to fulfill a prophesy? If so, why? Do I really want my God to be a God who says, “Because I said so”??? If I didn’t have the light and the grace of the New Testament would I believe in the Old Testament God? Here’s the thing. He never changed. The person and work of Christ did not change the Alpha and Omega. He was and is and is to come. He gives and He takes away. He wrote this story from beginning to end before any of it was spoken into existence. Blessed be His name.

So what comes to mind when I think of God? What kind of God needed to allow the physical pain, emotional suffering and loss and financial ruin to our family these past years? If He loves us so much that He sent His only Son to die for every single one of our sins why would He let us be hurt this way for so long? The answer is simple. God is God. His ways are higher than our ways. His purposes are always about the soul. We see in a mirror dimly what will someday be shown clearly to us face to face. We will know what is already known by Him. If we traveled back to Eden we would have bought the same lie Adam and Eve did. They wanted to be wiser than God. You ask me, “Did God plan for them to sin? Did He set in motion this entire cosmic story so He could be the Savior of the world? Do we have free will or are we nothing more than puppets?” The answer is simple. God is God. His ways are higher than our ways. His purposes are always about the soul. We see in a mirror dimly what will someday be shown clearly to us face to face. We will know what is already known by Him. Every single bit of this is more than we can comprehend. It is also more than we deserve. It is all Grace and we walk by faith.

More than six years ago, in my very first post about Danica’s Chiari diagnosis, I ended with a quote from Oswald Chambers. I committed it to memory and have returned to it a hundred times in this walk. It is the answer to the question that still nags on days like today when my pain is still oh so present and the future seems unclear. What kind of God?

“Living a life of faith means never knowing where you are being led. But it does mean loving and knowing the One who is leading. It is literally a life of faith, not of understanding and reason — a life of knowing Him who calls us to go.”

I spent the entire weekend in bed. My headaches and neck pain are steadily increasing. My neck is falling apart below my last fusion. I will fly by myself to Washington DC on Wednesday for yet another flexion and extension MRI and visit with my neurosurgeon. Yesterday I felt so much despair I returned to a place I hadn’t been in months. I wanted out. I cried. I raged. I collapsed.

This morning I woke and God took my morning worship to these words from Frederick Buechner:

It is out of the whirlwind that Job first hears God say “Who is this that darkens counsel by words without knowledge?” (Job 42:3). It is out of the absence of God that God makes Himself present, and it is not just the whirlwind that stands for His absence, not just the storm and chaos of the world that knock into a cocked hat all man’s attempts to find God in the world, but God is absent also from all Job’s words about God, and from the words of his comforters, because they are words without knowledge that obscure the issue of God by trying to define Him as present in ways and places where He is not present, to define Him as moral order, as the best answer man can give to the problem of his life. God is not an answer man can give, God says. God Himself does not give answers. He gives Himself, and into the midst of the whirlwind of His absence gives Himself.

I am asking for God to turn my heart and mind from the uncertainty and fear of what could come next and from asking the questions about how in the world could I ever really be healed and restored to just wanting to KNOW HIM MORE, listen to His call and go where He leads. It really is that simple and beautiful. He gives Himself. It is Grace. It is enough. I believe this pain will turn into joy and greater good and His glory. I trust him because He promises.

Bitter today. Painful this week. Hard this month. Sweet for eternity. Yes, please.

Photography by my dad, Gregory Scott Roberts. Used with permission.
Linking up with Jennifer Dukes Lee’s beautiful #TellHisStory post.

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Addy’s Army. Gauntlet Story Feast

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Addy1

Once in awhile in our community of heroes there is a family…a child…a story so similar to your own you feel like you are sharing one heart. LeighAnne’s fight for her daughter Addy mirrors my own battle for Danica in so many ways. Addy’s surgeries, her recovery and her personality are so like my brave girl. Their family’s faith in a good God, overwhelming prayer and financial support from people near and far and their hope for the future remind me “Where there is great love, there are always miracles.” –Willa Cather

Addy’s Army
By LeighAnne Busby

Many people have asked me, “What are Chiari, EDS, and Cranio-Cervical Instability?” I give simple as possible medical definitions. I explain they are a cluster of disorders inflicting great suffering on those diagnosed. In the same breath I also share how they have been the gateway to the unfathomable love, grace, and mercy of our Creator. Before diagnosis I didn’t need God this desperately. I didn’t collapse into my Heavenly Father’s arms this completely. I didn’t fall to my knees and worship Him this fully.

When my daughter Addysen was born she seemed as “normal” as my older 4 children. I now know she is anything but ordinary. Not because of her disorders, but because of how she lives her life. Her strength and determination make me believe God prepared her for for what she would be asked to endure for His glory long before He formed her in my womb and gave her breath.

When we received her diagnosis in October, 2013 I nearly fell to the floor. Her presenting symptom was a seizure which prompted an MRI. I was told by her doctor that the Chiari Malformation we saw was not to blame. I knew in my gut this was not true. I stopped living for the next few months in order to pray and research. God guided my every move. I felt completely powerless, and I still do. It was exactly where God wanted me. He needed to move and to be able to guide my husband and I to the right people at just the right time.

We met the first surgeon in February, 2014. He looked at me and said, “You and all your children need to be scanned.” In the next few months, we discovered that EDS was a genetic factor, and I passed it down to Addy and some of my other children. For just a moment I felt utter devastation, but there was no time for a pity party. A dear friend of mine encouraged me to travel to the best expert we could find. I told her there was no way, because we could not afford it. Her response was, “Whether you decide to travel or not, do NOT ever let it be because of finances. God is bigger than that!” It was the best advice I ever got.

One of the greatest blessings through all of this has been watching God use ordinary people in extraordinary ways. A month before Addy’s first symptom appeared we left our church family due to a painful chain of events. We settled into a new church a couple of months later, but we had no intention of really sharing our struggle. We now realize He placed us right where we needed to be so we could be ministered to in a way that we had never seen before! I don’t even remember ever fully explaining to anyone all we were facing, but God revealed it somehow. Before long Addy had an entire army around her. Even our local police chief heard about Addy’s situation and led the charge of fundraising for her. The teachers, staff, and parents at the elementary school that my children attend all took the “Polar Plunge” for her in order to raise money. Friends, family and strangers alike rallied around us and have never left our side. In our darkest moments we know the prayers and support of others have been the literal arms of God and carried us. We are forever grateful for God’s provision, and we are hopeful that each and every person who has helped us will receive a blessing that cannot be contained.

Addy has now had three major brain and spinal surgeries within seven months and two of those were done over seven hundred miles away from our home. God is faithful.

He led me to other moms and dads who spent countless hours answering questions before I even knew to ask them. He led us to Dr. Rekate in New York who has become almost a grandfather to my children.

There have been many good and bad moments in this fight. I will start by sharing the worst. Following the second and third surgery Addy was unable to swallow, and she was no longer talking at all. The speech therapist and several doctors came into the room and shared in front of her that she may have lost the ability to swallow on her own and would likely need weeks and weeks of therapy if it was to come back at all. Over the next few hours her whole demeanor changed, and she rapidly went downhill. We were very sure she may not make it through the night. I called a mentor of mine late that night, and I screamed into the phone pleading with her, “Please, please tell me what to do to save my baby!” She told me, “You go in there and talk straight into her soul as only a mother can, and you give her all your strength and the encouragement she needs to keep fighting.” It sounded very strange, but I did it. I wrote the words I spoke to her and shared them with the world later that night. I believed. I had nothing else to hold on to. Late in the morning on the next day Addy smiled at me. It worked! God breathed life into my words that night, and that life went straight into my little girl!

When Addy came off the ventilator, she spoke only a few words. “Hi Mommy!” Then she said pointing up in a circular motion, “They were up there. They said you are gonna be okay. Addy, everything will be okay.” She didn’t speak again for days. She didn’t need to. She said it all. They were there! Best. Moment. By. Far.

Addy is healing, but there is much more to fight. If you are on a similar journey my advice is simply this. You must BELIEVE. Believe there is a purpose for your hardship. Believe God is working on your behalf. We cling to Romans 8:28. “And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.” Without faith and hope these disorders have the power to destroy you. In God they can be grace and gift.

You can continue to follow Addy’s story here: https://www.facebook.com/AddysArmy?fref=ts

Addy3

Addy2

About LeighAnne Busby in her own words:

I am a wife to Nick, a mother to five beautiful children, a friend, teacher, and a student of life. I am incredibly impatient, analytical (sometimes to a fault), and greatly flawed, but I am blessed beyond measure. I was born to a gifted, brilliant and spiritual mother who taught me more in the first seventeen years of my life than most people learn in a lifetime. Sometimes I feel that when she went to be with the Lord she poured all of her knowledge and fight into me. Music is an important part of my life. It has the ability to bring me up or make me broken depending on what I need at the time. My favorite pastime is driving alone in my mommy-mobile minivan and listening to Casting Crowns or other uplifting music (although I am known to listen to a little rap/R&B as well.) I am living my life one moment at a time and try to find God in every second of every day.

If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

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Walking Through Fire. Gauntlet Story Feast. And a giveaway

by

SamGauntlet

I met his mom in November in the Texas hill country. We came for retreat, and God brought our hearts and lives together over shared diagnoses and Hope in Jesus. This week’s story is so real I have not been able to shake it from my mind.

Walking Through Fire
By Sam Re

A friend recently asked me how I was doing, not, How are you? or How’s life? or What’s been going on lately? but, In all reality, how are you actually?

Imagine if you will, walking up to a cashier at your favorite fast food place. You’re standing in line, awaiting your turn. Suddenly your right knee begins to hurt, almost as if it’s going to stop supporting your weight, not a ton of pain, but you can feel it. Now imagine the pain duplicated in your left knee. Then your right elbow, your shoulders, your left foot, right wrist, your entire left hand, ebbing and flowing, surging, retreating.

Now stomach pain so intense it feels like a pit where your internal organs should be, your body imploding to fill the void.

Next a pain in your throat, a burning pain from acid reflux. Water helps, but doesn’t quench it. Then sudden shooting pains in your chest as a nerve fires. On. Off. On. Off. There. Gone.

Another sudden shooting pain in a different location, randomly, no rhyme or reason, each leaving an ache.

You’ve had a headache all day, a mild one, but you can feel it, pressure in your forehead, pain in your temples.

Your back, shoulders, legs, and arms are now aching. Your whole body is aching. Then the nausea. You feel borderline sick, but you’ve felt this on and off all day and had to eat anyway to keep up your strength and weight.

You are tired; so, so tired.

All you want to do is collapse, right then and there on the restaurant floor. Your body doesn’t want to hold itself up anymore. You fight to keep standing. The pain, nausea and exhaustion are wearing you down. You struggle to keep standing there, acting normal, like you are fine, like everything is fine. But you are so incredibly tired, exhausted beyond belief, weary, and a little voice at the back of your mind is siding with your body, wanting you to give up and sleep.

But you’ve woken up feeling like this every day for the past week. The past month. The past year. The past six years.

So you focus. Steel your mind. Decide what you want. Then you hear something. You’ve been hearing it for awhile. People talking. Not just the words, but the conversations. All of them. Words bouncing around in your skull, pounding, piercing, painful.

A fly buzzing too? No, the sound of the ceiling fan, spinning, squeaking quietly against it’s metal bearings, the wind, people opening doors, moving, shuffling, cell phones ringing, buzzing. Noises, tiny and big. You hear them all, but they’re mixed together, bouncing around inside your skull like pinballs, a cacophony of white noise. But wait. What’s that?

The all too familiar feeling of adrenaline coursing through your system as every sense in your body is amplified. Every noise, every sight, every little thing that dares to touch you, the breeze gently moving your arm hairs. You are in full alert.

Then you realize the cashier has asked you what you would like. You need to order. You force yourself to think. The pain and nausea are getting worse by the second. You are starting to become afraid, but you focus. You start to utter the words of your order and realize you are stuttering, not making sense.

You focus harder, mumbling, “Uhmmm,” to complete what you were saying, focusing on each word. You stumble through the order.

Congratulations. You answered the cashier’s first question. What about the second?

* * * * *

This year is the hardest I’ve ever gone through. And yet, if I had the choice, I wouldn’t go back six years ago and change that I got sick. I wouldn’t remove these diseases I carry, wouldn’t cure myself. And really, I don’t know if I ever want to be cured.

I’ve often heard people say that your diseases don’t define you, and I agree. My diseases are not who I am, not the entirety of my being, but they have melded with my vision of myself. They have become something non-removable from who I am, as much a part of me as the gifts God has given me.

My flaws, my mistakes, my failures, my diseases, I’m not looking to get rid of them or hide from them or pretend they don’t exist. I’ve already lost so much that once was me. What’s left has been thrown with me into the forge, and when I emerge, those things will not be impurities or faults in the metal, but they will become my strength, for I am in the unique position to bridge worlds.

I know what it is be healthy, strong, fast, optimistic, and hopeful, and I know what it is to be unhealthy, slow, worn out, in pain, broken, pessimistic, and afraid.

I am in the flames where the forge burns brightest, being taken out and hammered into shape, thrust back into the flames. It will not always be like this, but my pain is not holding me back. It is not holding me down. It is my anchor point, necessary to forge me into who I need to be when God calls upon me, who I need to be for my part in His plan.

This is who I am now. And I have a voice.

SamRe

About Sam:
Sam Re is a wildly creative twenty-something with an old soul, a quick wit, and a disarmingly loyal cat named Tiger. Six years ago, Sam was diagnosed with Eosinophilic Gastroenteritis after losing 22 lbs in eight weeks and winding up on the critical care floor of Children’s Hospital. The ensuing years added dysautonomia, POTS, Ehlers-Danlos Hypermobility, asthma, eczema, allergies, reflux, and spontaneous pneumothorax to the diagnoses mix.

Sam’s words can be found at: https://freedomfalsified.wordpress.com/category/walking-through-fire/
And his 3D creations at: https://www.etsy.com/shop/PhenixEmporium

Sam has donated his friend Rachel Hoffman’s book The Reality of Chronic Illness, A Photo Documentary, by Rachel Allison Hoffman. It is well-written, beautifully illustrated, poignant, and important. If you or someone you know are living with chronic illness, this is a must read.

Would you take back a diagnosis and erase the way suffering has changed you?
Share this Gauntlet Story somewhere on social media with the links below and using the hashtag #GauntletStoryFeast. Leave a comment to be entered in the giveaway for Rachel’s book and let us know where you shared. The winner will be randomly chosen next Wednesday, April 22nd after midnight and announced with next week’s Gauntlet Story.

If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

Photography by Cindee Snider Re. Used with permission.

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Who Do You Think You Are?

by

Monica10

It’s late.
My family is asleep, and I am awake.
Nights are the longest.
Nights are the hardest.
There is no one left to convince I am okay.
There is no one waiting for me to say the right and true thing.
There is no one needing me to shine a light on their own version of this difficult life.
I am alone.

I began a new round of plasmapheresis treatments last Tuesday. After Monday’s brutal attempts to get IV access before my catheter placement I was already beaten up. A large hematoma began to form where the doctor, through ultrasound, finally found a vein in the upper part of my right arm. This along with the pain and invasive nature of the plastic tube stuck from my jugular into my heart’s main artery had shaken me. I felt like the first three treatments went as well as expected. I had the usual exhaustion, headaches and nausea, and by Easter Sunday I was wiped out. I knew something wasn’t right beyond the treatment side effects. Dan took the girls to church and to my parent’s for dinner and egg hunting. I stayed in bed. My headache was gaining momentum. When I woke Monday morning I knew I was in trouble. I couldn’t lift my head off the pillow.

Dan drove to the emergency room Monday evening at 5:30 pm.
He dropped me off at the door in the pouring rain.
I was alone.

It seems strange every time I tell it like this, but it is not for us. Dan makes sure the kids are okay. I take care of myself. Something about my demeanor made the ER staff take me back quickly even though many were waiting. The pain was so severe I couldn’t lift my head from my hands. My right eye was twitching. Stinging tears were running down my face. I keep a typed medical history with me and a list of current medication. If I’m too sick to tell my story I hope they can piece it together somehow. If nothing else the long list of operations and insane list of pharmaceuticals give me some credibility. In emergency rooms this is gold. It’s been almost a year since I resorted to going there. I hate the process and the place that much. I will only go if my pain is a 10.5 on a scale from 1-10. I live at a 4 or 5. Every single day I hurt. This was so much worse. This was scary worse.

As I laid on the hard stretcher with no pillow, I waited and tried to pray, but mostly I listened to the stories happening around me. In the holding bay next to me a woman was wailing. She wasn’t in physical pain. She wanted to die. The security guard and nurse kept probing about how many pills she had taken and whether she had any alcohol with them. Did she hear voices? Was she on her way to the crisis center? She was in tortuous pain of a completely different kind. My heart was breaking. I had been that woman before. I could hear the complete loss of identity in her voice. They kept asking the same questions. “What’s your name? Who are you? Where do you live? Who can we contact who cares?”

The doctor decided I needed a lumbar puncture to test my cerebral spinal fluid, CSF, for meningitis. After two attempts to take blood and two IV tries I became filled with anxiety. I had been given 1mg of Dilaudid for pain. If you know anything about me or how EDS affects my body’s processing of medication you know this amount of medicine is nearly placebo. I asked for Toradol. I explained this non narcotic worked the best with this kind of headache. They seemed thrown by someone not wanting to get doped up in the ER. They did not want to give me anything with blood thinning properties before an LP. Because I had this small dose of meds they asked I call someone to drive over in the middle of the night and sign a consent. This has never happened before in my long medical life. My dear parents, just back from Spain and tired to the core, answered my call and came quickly to sign the paper. I was taken down to the empty radiology floor and put face down on the freezing cold table. The same doctor who placed my cath was called out of bed to do my LP. It had to be under fluoroscopy because of the unstable nature of my spine and the brain shunt tubing there. A long needle was placed deep into my back and pulled tubes of fluid from my spine. I couldn’t stop my tears. “How long, oh God?”

Around 2 am I was taken up to the fourth floor to be admitted. I was utterly exhausted and had no real relief from my head pain. Now I was now suffering from all the needles in my arms and back. Then the process began again. My new nurse came into my room, flipped on the overhead lights and asked me the same litany of questions I just answered hours before. I kept thinking of the woman downstairs. “What’s your name? Who are you? Where do you live? Who can we contact who cares?”

One of the overwhelming feelings I get every time I’m admitted is the helplessness and bizarre anonymity that comes with stripping off all your clothes and jewelry and anything that identifies you to put on a hospital gown. You are now just a chart on a computer screen, a case to be discussed, a room whose call bell they hope won’t be rung too often. Even with the best nurses and doctors there is a very real sense of no one knowing you. The longer you are there the feeling of being institutionalized grows. Your legs get hairy. Your hair gets greasy. Your hospital issue footies get filthy as you get out of bed over and over again to unplug your IV pump and drag it into the bathroom to pee which you have to do at least every hour because of the bags of fluid they are giving you. For me this is all compounded by the frustration of being stuck over and over again because my veins are so weak and damaged they will barely give labs and my IVs will hold for only hours. I questioned why they couldn’t use this beautiful access in my chest for blood draws and meds and fluids. Oh no, that port belongs to dialysis. We cannot touch it. Okay, but it is my port, and you are repeatedly hurting me. At this point my arms looked like I was the worst skilled IV drug user ever. They were covered in tracks and bruises. A new IV team finally found a vein in the top of my shoulder that was a virgin and held. I asked for Tylenol. We can give you more Dilaudid they said. It took four hours to get an order for Tylenol from the doctor and the pharmacy to send some to me.

By Tuesday morning I wasn’t any better, but I began to feel frantic and caged. At least once every hour I fantasized about ripping my IV out and escaping. Why in the world did I come here where no one knows who I am? I’m Monica Kaye. I am the wife of a prince. I am a mother to two beautiful daughters. I am chronically ill but refuse to quit fighting. I believe in Jesus, and He is the only reason my Hope remains. I wished I could wear a sign or hand them a copy of Gauntlet With a Gift to tell them my story. I wanted them to know this snapshot of a sick woman getting treatmeant for some weird autoimmune disorder called PANDAS who came in with an unbearable headache didn’t explain me at all. This list of weird disorders called Chiari, Ehlers Danlos Syndrome, Dysautonomia, Mast Cell Activation Disorder and more were not ME.

After being “released” on Thursday I came home to sleep until my final pheresis treatment on Friday. Over the weekend I slowly began to steep myself back in truth. I kept thinking about the woman behind the curtain in the ER. I continued to think about my own identity in all this brokenness. Sunday morning I opened Paul David Tripp’s New Morning Mercies: A Daily Gospel Devotional to find this message in answer to my heartache.

Who in the world do you think you are? I’m serious. Who do you think you are? You and I are always assigning to ourselves some kind of identity. And the things that you and I do are shaped by the identity we have given ourselves. So it’s important to acknowledge God has not just forgiven you (and that is a wonderful thing), but he has also given you a brand-new identity. If you’re God’s child, you are now a son or daughter of the King of kings and the Lord of lords. You are in the family of the Savior, who is your friend and brother, You are the temple where the Spirit of God now lives. Yes, it really is true–you’ve been given a radically new identity.

The problem, sadly, is that many of us live in a constant, or at least a rather regular, state of “identity amnesia.” We forget who we are, and when we do, we begin to give way to doubt, fear and timidity. Identity amnesia makes you feel poor when in fact you are rich. It makes you feel foolish when in fact you are in a personal relationship with the One who is wisdom. It makes you feel unable when in fact you have been blessed with strength. It makes you feel alone when in fact, since the Spirit lives inside of you, it is impossible for you to be alone. . .

So if you’re his child, ward off the fear that knocks on your door by remembering who God is and who you’ve become as his chosen child. And don’t just celebrate his grace; let it reshape the way you live today and the tomorrows that follow.

Our family photographer just sent me the files from an anniversary photo shoot of Dan and I from February 2011. The above picture of me is from that day. Danica was still in her Minerva brace and wheelchair. I had come through my hysterectomy in August, 2010 knowing I needed a bowel resection, but I was literally breathing the 24/7 care my Danica needed not realizing how each day was breaking me just a little bit more in every possible way. Since this photo I have had ten of my nineteen surgeries. My body resembles almost nothing I see there. I barely remember who that beautiful woman was, but I know who I am today.

I am more than flesh and bone.
I am a daughter of the King of Kings.
The Spirit of the living God resides in me.
I am not alone.
I will never be alone.

(I am done with my treatments and had my levels tested yesterday. I am waiting to hear if they are low enough to have my catheter removed. I will begin the chemo drug for six months to suppress the antibodies from returning in hopes this invasive treatment can be slowed or avoided altogether. Please pray for my body to respond well to the new drug and for it to work as anticipated without toxicity or drastic side effects. Please be in prayer for a trip to Maryland on April 29th. I will fly alone (there’s that word again) and have a tough day of a flexion and extension MRI and then late appointment with my neurosurgeon. I will stay the night and fly home the next day. Like always the financial aspects of my out of network treatments here and these trips burden us. The emotional and physical toll are an even greater weight. My instability from C4-6 or 7 is causing a great deal of pain. I am wearing my collar more and more and praying the removal of inflammation from the pheresis will help with my symptoms. Thank you to each one of you who has been praying for my family and I, making meals, sending letters and cards, and especially those who mailed care packages to the girls during their spring break with a sick mama in bed. You are God’s hands to us. Bless you. Our Hope remains!)

What in your life causes you to lose sight of your identity? What sign would you wear so others would really see you and know you? When you begin to feel alone what Scriptures or songs bring you back to the truth of who you are in Jesus Christ?

Photo by Grace Designs Photography

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Beautifully In Over My Head. Gauntlet Story Feast

by

Rachael

Welcome back to our Gauntlet Story Feast Community

This week’s story comes from Rachael. She is an eighteen year old warrior headed into fusion surgery on Tuesday, April 14th. Please pray for her and her family. Please pray for Dr. Henderson. Please pray for healing. Her beautiful heart of faith and courage will bless you. If you would like to donate to Rachael and her family as they bear the cost of this upcoming surgery you may donate here. Every drop makes an ocean.

Beautifully In Over My Head
By Rachael Wilson

“You were young, you were free, and you dared to believe you could be the girl who could change the world…”

Strong. Energetic. Hyper. Adventurous. Crazy. Daring. Random.

As a child, I did simple things, and I loved every moment of it. I was happy, healthy, spunky, and excited about the future.

I danced. I dreamed. I laughed. I lived.

I ran with my friends, and I ran fast. I jumped up and down, and I jumped high. Aside from schoolwork, I spent my spare time doing anything I could to stay active. I played with friends. I made crafts. I rode my bike. I explored nature. I went to church. I traveled places. Basically, I had enough energy to do anything I set my mind to.

“Then your life took a turn, and you fell, and it hurt. But you’re still that girl, and you’re gonna change this world.”

By the time I was in 9th grade, I was a dreamer; excited to serve God, and ready to follow wherever He led me. I began dancing at a Christian studio, and I fell in love with ballet. There was something magical about transforming into a ballerina and worshiping the Lord with movement. I was dedicated, and I became stronger than ever before. I could dance for hours and still have energy to spare. I had the typical dancer lifestyle: Eat. Sleep. Breathe. Dance.

I started noticing a change in the way I felt at dance class. I didn’t have nearly as much energy, and I had confusing symptoms. I blacked out when I turned. I saw stars when I stretched. My heart was pounding when I jumped. My legs felt like bricks when I would leap. My hands were shaking with tremors when I tried to make them graceful. I had scary chest pain. But I kept pushing through. I wanted to dance more than I cared about the odd sensations. Eventually, something was clearly wrong. Long story short, I was diagnosed with POTS syndrome, and put on medication to control it. The struggle to continue dancing was worth it to me. Fast forward a year, and I developed more symptoms. This time, it was pain. I was diagnosed with a genetic condition called Ehlers Danlos Syndrome.

Soon after, I started having relentless headaches. I began seeing flashes, blobs, and lines in my vision all day. I woke up with vision loss. I developed nearly constant vertigo. I started forgetting simple things. My arms began tingling and getting numb. I became exhausted after simply walking up stairs.

I wasn’t sure what God was up to, but I clung to my relationship with Him. I knew He could use my mess…somehow.

A neurosurgeon diagnosed the cause of these symptoms as cranio cervical instability, atlantoaxial instability, and brainstrem/spinal cord compression among other things. At my appointment, after he reviewed my MRIs, we were told surgery was necessary. There is peace in knowing this is what God has provided to get my life back, but fear in knowing what it will take to get there.

“I’m standing knee deep but I’m out where I’ve never been. I feel You coming, and I hear Your voice on the wind…come and do, whatever You want to.”

Having a chronic and often invisible illness presents its daily challenges.

You learn to constantly fight your body to do things that most people take for granted. The desire to be active is there, but it is trapped in a body that won’t allow it.

“Further and further, my heart moves away from the shore. Whatever it looks like, whatever may come I am Yours…”

You watch yourself fade, but you also watch yourself bloom.

You learn that every day God gives you…every moment…every breath…is a miracle as much as it is a blessing. A friends joyful laughter. A bright sunny day. A calming song. A silly joke. A perfectly timed devotional. The smell of the crisp spring air.

“Then You crash over me, and I’ve lost control but I’m free, I’m going under, I’m in over my head. Then You crash over me, and that’s where You want me to be…I’m going under, I’m in over my head…”

As a chronically ill person, you spend a lot of time resting. You have plenty of time to sit and think. You can easily find yourself thinking enough “what if” thoughts to write a novel.

It’s not always sunshine and rainbows. You will wonder why God is allowing this. You will wonder if He is still there. You will wonder why you have to suffer and feel extreme pain. You will wonder if you will ever find relief. The truth is, ALONE we are not able to handle whatever challenges may come our way.

“When my heart is overwhelmed, lead me to the rock that is higher than I.” Psalm 61:2

Alone we are WEAK. With God we are STRONG. Alone we are AFRAID. With God we are BRAVE. Alone we are in PAIN. With God we find COMFORT. Alone we are WORRIED. With God we are HELD. Alone we CANNOT do this. With God we CAN.

Rest in knowing that your gauntlet, your struggle, and your fight is the stepping stone into the gift of becoming exactly who God needs you to be to fulfill His plan for you.

“Whether I sink, whether I swim, it makes no difference when… I’m beautifully in over my head.”

R Wilson

About Rachael in her own words:
I am an 18 year old recent high school graduate who is looking forward to pursuing a degree in the medical field or Christian counseling following recovery from my cranio-cervical fusion.

If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

Photography by Cindee Snider Re. Used with permission.

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Life is a Gift. Gauntlet Story Feast

by

UnfathomablePlan

Welcome back to our Gauntlet Story Feast community.

This week’s story is from Pamela Fenner. Pam was my very first hero in this walk. In the initial research stages of writing Gauntlet with a Gift I went back to all the messages between Pam and I on Facebook and in email. As I read through them I realized over the years we had written a beautiful book of our own. She forged the way for me in her own neurosurgeries, and Danica, in many ways, paved the way for her daughter Eden’s surgeries. Through pages and pages of detailed medical research and information about doctors and hospitals, symptoms and diagnoses and medications and therapies there is a beautiful thread of faith and friendship. It is a sturdy life line held in the hands of two women who have intimately shared and grown through the most painful challenges. Pam is perhaps the most giving zebra I know. She is a support to many in their walks while at the same time tirelessly advocating for more research and better understanding of Chiari, Ehlers Danlos and other accompanying disorders among physicians and anyone else who will listen.

Pam will be heading back into surgery this coming Tuesday, April 7th, for fusion of her C5-C7. Please pray for her and for Dr. Henderson. Please pray for her dear husband and children. Please pray for strength and healing.

Life is a Gift
by Pamela Fenner

“Life is a gift. Regard it as such. Return the blessing through each life you touch. Every seed planted springs forth new birth. Allow your bouquet to cover the earth.”–Lorna Jackie Wilson

My world had been rocked to the core. One doesn’t imagine their life can change in the blink of an eye. I never imagined handing my daughter over to a neurosurgeon four times (now I know that number will only increase over the years). I never imagined that I would need a brain surgery, along with a spine surgery, to attach my skull to my neck just to stay alive five years ago. I never imagined more brain surgeries would be in store for my daughter and I. I never imagined more spine surgeries would be in store too.

Living with Chiari and Ehlers Danlos Syndrome teaches you to expect the unexpected. Be prepared when they check your heart they are going to find something major. Be prepared they are going to find something major in most of the other places too. EDS involves a defect in collagen which makes up the entire body so even your blood vessels will be affected. Be prepared to find out these conditions have no cure (surgery is only a bandaid) but worse, these conditions are poorly understood and lack research and funding. Be prepared to have to arm yourself with knowledge so that you can be the best possible advocate for yourself and for your children (you unknowingly passed this onto them) as it will become your job to bring everyone up to speed. You will fight for your lives until you make it to a doctor who understands and can help. There will be plenty of days when you can barely lift your head off of the pillow, but you will have to, because your child is suffering too and needs you. The surgeries, the daily pain, all of the medical appointments, dealing with insurance, the mounds of medical bills . . . they can suck the life right out of you. Just when you might start to see light at the end of the tunnel something else rears its head, and you are thrown right back into the abyss.

At some point in time you accept the hand that you have been dealt. You convince yourself that just because you have these conditions it doesn’t have to mean that they have you. You learn to put on a great game face, become quite good at suffering and smile to hide the pain. You become kinder as you realize that everyone faces battles. Theirs are just different from yours.

I have always had what I thought to be strong faith, but evidently God thought it could stand to be a lot stronger. The storms kept coming over the years and each time I would let worry, fear and stress consume me. I learned to live in “survival mode.” When my daughter’s Chiari symptoms were the worst I would go into her room several times a night to check on her just to make sure that she was still breathing. My son had blood sugar that plummeted (especially during the night), and I would go into his room and check his blood sugar while he was sleeping. I never slept back then. My daughter would have one surgery and start to do well, and then things would go haywire again, and she would develop a new problem. In my son’s case it took nine years to get to the root of his low blood sugar, a rare Carnitine deficiency. His doctor asked me if I was sitting down before she delivered that news to me over the phone. In the midst of things I had my own serious problems that needed attention, but we learned to survive daily by triaging who was worse. I squeezed in my surgeries when an opportunity would present itself, and the light at the end of the tunnel would start to dim again. The stories I could share are unimaginable to most, and unless you lived under our roof you really have no idea. Things never let up and the stress, fear and fatigue were draining. There was no end in sight. This was our life. This is our life.

Surgeries and treatments over the past few years have certainly been miraculous, helping so much, but when you live with chronic conditions, there never is an end in sight. The stories will remain unimaginable. Today, I no longer fear the storms. They have made me stronger and because of them, an indomitable spirit now resides inside of me. The storms have taught me that worry and stress won’t ever change the outcome, but that they will take away the day’s sunshine. I learned that fear doesn’t prevent death, but instead prevents life.

My faith is much larger now. It is impossible to endure difficult times without huge faith. There is no longer a reason to live in “survival mode” once you “let go and let God.” I have been given the opportunity to see life through a different set of eyes. I now see everything I didn’t notice before when I was too busy and too distracted. When you don’t have your health you learn very quickly what a precious gift life really is. You begin to not take one day for granted. You realize that the secret to having it all is already knowing that you do. Perhaps I have been given a gift wrapped up in a daunting medical diagnosis.

BeautifulPam

Pam scar

About Pam in her own words:
I spent years trying to figure out the cause of my headaches and other symptoms after my son was born fifteen years ago. I was diagnosed with “Migraines” and “Fibromyalgia” back then. I had gone from living a pretty healthy life to a life full of symptoms that snowballed out of nowhere. My head pain and symptoms became much worse after the birth of my daughter six years later. She had difficulty with crawling and walking and at two years old was sent for a brain and full spine MRI. The radiologist handed me the report before we left the hospital. I will never forget that day. That is when I heard the word Chiari for the first time. I immediately Googled it when I got home. It was at the moment when I realized what I had been suffering from for years, and it was not long after when I learned about Ehlers Danlos Syndrome. In 2009, all three of us were diagnosed with EDS by genetics.

I am so thankful for the amazing support system of the online community that has been created by patients and families living with these conditions. I have met so many wonderful people on this journey who have been there for my family and I even during some of the most difficult days of their own lives. They “get it.” Sometimes no words need to be exchanged. What a beautiful gift, to be carried by others, when life has knocked you down.

If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

Photography by Cindee Snider Re. Used with permission.
Quote taken from Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life.

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Undone. Treatment Again. And a giveaway

by

Trauma

I began reading Michele Cushatt’s Undone: A Story of Making Peace With an Unexpected Life at the beginning of a challenging week. You may have noticed quotes from her book on the graphics for recent posts about our new Thursday community called Gauntlet Story Feast. I finished reading it yesterday while waiting at the hospital. Michele’s narrative is full of truth spoken into my mind and heart at a time when the lies seem much louder and more believable.

Her story is completely different from my own. It involves ministry, divorce, remarriage with a blended family, foster children and recurring mouth cancer. Still, there are quotes at the beginning of each chapter that I have woven into my own tapestry of faith over the years. Most of the Scripture she shares are verses and passages I have scribbled on index cards, in journals and highlighted and bookmarked in my tattered Bible. There are moments she bares her soul in such a way I can literally see my own reflecting back at me.

I’m heading back into the trenches of treatment. There are always weeks I dance around what I know is happening in my body, and there is always a moment when it becomes clear intervention is needed again. I get that heart pounding, mind racing, nausea inducing panic. Every time, I begin with a wail similar to Michele’s when the fears of her cancer returning, prompted by some kind of physical manifestation, would cause her to cry she just couldn’t do it again. Another surgery. Another treatment. Not again.

She candidly writes about trying to do all the healthy things she knew may bring some measure healing. I certainly have been dedicating myself to these things as well. Eating well, exercise, mental health counseling, consistent time in the Word and prayer and meaningful relationships with positive people have been my primary focus since my last round of plasmapheresis over Christmas and New Years. All of this is good. But when your DNA is glitched. When your cells have morphed into invaders. When God answers a resounding “No” to the pleading for Him to remove your thorn in the flesh you start to know

. . . the hard way, that sometimes trauma grows beyond a long walk’s ability to cure. The losses, crises, transitions, and upheavals extend beyond the arm’s capacity to hold. At times, even when your belief in and love of God run strong and true, your body just can’t take any more of the trauma.

The first time I had apheresis I was in-patient in Maryland. It was a year ago. Dan and I left our girls on Easter weekend to begin this new chapter in my quest for healing. I had a three pronged nearly foot long “Quinton” catheter placed. It hung from the side of neck and made every movement uncomfortable. I had eighteen surgeries under my belt by then, five in that hospital. Because my venous system is also affected by my EDS I require a PICC line for most things. I knew the interventional radiologist and trusted him and the team implicitly. Still, I had nothing to compare this placement to. Lidocaine doesn’t really numb me. I tell this to everyone who tries to use it. They never quite believe me. I’ve learned to bite my lower lip, hold back curse words and let people take the cut. I think everyone on the outside looking in at my life must somehow think it gets easier or less frightening or even less painful to go through these traumas over and over again. I’m telling you it does not.

When I repeated my treatment locally and out-patient in early September, 2014, we decided to have the line placed at my insurance preferred hospital for financial reasons even though the actual apheresis be at a local out of network hospital. My dad took me for a scheduled 7 am surgical appointment. There was an emergency that required the room, equipment and doctor and nurses I was supposed to have. The hours dragged on while I laid in my cap and gown in holding. Every once in awhile a nurse would poke her head in and tell me it wasn’t going well in there, and it would be a little longer. I had treatment scheduled at the other hospital at 2 pm. Finally they were able to take me back, but the entire room seemed disheveled. The nurses were exhausted from whatever they had just gone through. The doctor came in and said he knew I had to rush over to make my treatment time so he wasn’t going to use any sedation drugs at all, just a shot of lidocaine. I made my “it doesn’t work for me” plea. He brushed it off, and he took the knife to me. It was horrific. The entry for this tunneled cath was different. He kept getting the needle in but couldn’t get the angle right to jam the tube in. He was frustrated and I could literally feel the frustration in his frenetic efforts. I was bleeding. I could see it and feel it. I was freaking out and hot tears were running down both sides of my face into my ears. It was sewn lopsided and pulled and chaffed the entire time I had that particular cath. I developed a huge bruise around the area from the jamming and pushing of the tube. I swore I would never let that doctor work on me again.

My last round of treatment was late December, 2014. I didn’t care what the extra cost I knew I wanted the cath placed at the same hospital I would have treatment. They were so much kinder. They tried to give me some anxiety and sedation type drugs. I think they calmed me a little. I was still fully awake and very aware. The lidocaine was once again like a placebo. The doctor was much gentler with insertion. I still remember crying the entire time. Once of the nurses stood next to me and wiped my face with tissues.

Monday at noon I will have a catheter for a central line tunneled from a cut in my jugular all the way into my vena cava. This allows for multiple lumens so blood full of bad antibodies can leave my body and theoretically clean plasma in the form of albumin can enter my body all at the same time. Tuesday I will begin the first treatment.

The plan is to have five spread out over ten days. This has typically removed about 98% of my bad antibodies. What we know now through more cases and research is my body is slowly recreating these suckers and around 60-75 days after treatment I am back where I started in terms of the science and symptoms. The new recommendation agreed upon by three of my specialists, including my cardiologist in Toledo who I saw Tuesday, is we clean me out and follow immediately with an old chemotherapy drug. It is well understood. It is easy to administer weekly. It is easy to monitor for side effects and toxicity and would hopefully suppress the bad antibodies from returning. There are three other drugs we can try if this one is not tolerated. The time frame for this treatment would be six months or longer.

My parents are in Spain. My girls are on spring break. The logistics of this treatment are so hard because each day I have to go very early in the morning to get labs drawn and either sit at the hospital for hours waiting for a call from the unit for a time or drive home and wait and then go all the way back. We have Monday worked out with Dan taking off and my sister helping with the girls. Tuesday Dan will leave work and take me whenever they set a time for treatment. Even if the girls have to ride along and they drop me and then pick me up it will work. We had a little family meeting last night. Dan said, “We are just going to do our best. That’s all we can do.” There is no molly coddling our girls anymore about how this sucks. This is another break from school where all the focus is on their mom, and they have to stay still, be quiet, watch movies and wonder how the rest of their friends are having fun.

Thank you for the offers to help with meals. My friend created a Take Them a Meal schedule. The sign in is “Snyder” with the password “Help”. All our other needs are repetitive, and I weary of making them known. More than anything we need prayer. Please pray.

Michele writes at the end of her story,

Making peace with the unexpected life isn’t some trite, Christian cliche. It isn’t a beautiful string of words that look nice and shiny hanging around my neck. The kind of peace that weathers a furious squall by sleeping in the boat is both hard earned and God delivered. One story–and serving of manna–at a time. And by the mercy and grace of the one who walked me through all the storms leading up to this one, I can finally say, even as the rain soaks my face, “I am convinced.” He will not let me go.

Today I feel like I just can’t take any more trauma.
What I believe about God says I can.
I am convinced.

Our Hope remains.

When you are faced with a daunting trial what Scripture do you cling to the most? Will you comment here with a verse so I can feed on truth in the coming weeks? And will you use the share buttons below or quietly ask a friend to pray for my family and I? We are grateful. I am giving away a copy of Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life. Each comment of Scripture will be an entry into a random drawing Friday morning, April 3rd.

Photography by Cindee Snider Re. Used with permission.
Quote taken from Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life.

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Silent Entrapment. Gauntlet Story Feast Begins

by

Flaws

Welcome to our first Gauntlet Story Feast.

Suzanne has been posting her beautiful poetry and prose on medical message boards I belong to for some time now. When I stumble across her words I always discover something I have wanted to say and could never quite express. In the piece she shares with us today she captures perfectly the inner dialogue of knowing something is very wrong with your body but trying to argue it away because you, along with so many doctors and your family and friends, don’t want to believe it’s true.

Silent Entrapment
by Suzanne Blackwell Anderson

How could this be? Silent entrapment, what? Out of the blue, unforeseen, from behind, like a slap the night. Can’t they see me, can’t they find me? I don’t understand; it should be plain, right in sight. Why the pain with no answers? Is she crazy? She must be. Whiplash, that’s not real. It can’t entrap, it’s minor, don’t pretend, get a grip. The anger, resentment as the world crumbles down. You’re not hurt, don’t fake it, it resounds oh so loud. Alone in the solitude, so deafening, like a shroud; blankets to settle like lead on the ground. The pain, oh the pain, descends like a cloud; thick, dark, angry as it swirls all around. I’m sorry, you’re crazy it’s all in your head. These tests they don’t reconcile with the pain you have said. The dungeon is dark, I can’t find my way out. It there light, is there hope? I fear not and dread.

Then on the horizon I see far away, a small trickle, a God-send, could this be real? I know I’m not crazy, it’s real, OH SO real. I’m riddled with pain from without and within. Please help me, please help me I cry deep inside, though my voice is small and my hope is so thin. Such gentleness, kindness and strength all in one. Like a knight in the darkness, a beacon, the sun. Yes, hope. Yes, light. Yes, truth will prevail. You’re not crazy, it’s real, see here my dear. Don’t worry, it will pass like the cold winter’s night. Spring time will come, I promise, hold fast. Don’t give up, don’t cave, you’ll make it, I’m sure. Hold tight through the night for the dawn’s early light. It breaks forth, now I see it! It’s there up ahead. I’m gleeful, with joy; I break out of the shell. My hope is restored, and my pain is withheld.

So much I have found in this dark winter’s night. Deep treasure was buried inside the veil that my vision can’t see, so please do not wail. It’s good, it’s good, this treasure inside. The sunshine, the sunshine it’s beauty provides. Unearthing, unearthing cannot be so pleasant, but deep with inside are the true gems of this life. The rarest, most precious they’re there; you will see. Hold on, hold tight don’t give up in the night, your Master the Creator, He created all these. They’re for you, just trust Him, PLEASE trust Him, He’s good, you will see. He’s the Potter, the Painter the Maker of these. The rarest, most precious for those who believe.

How can I ever thank Him enough? So grateful, SO GRATEFUL, my heart over-flows, like a river in spring time as the snow softly goes. Such compassion, caring and goodness I see. Like none other I’ve known in this journey of life; my good Father in Heaven who sees down below. The entrapment, the whiplash, like a thief in the night. I’ll help her, my princess, and then she will be, forever redeemed from the pain deep within and the pain from without. Like a shawl I’ll remove to uncover true light. My beauty for ashes forever she’ll be.

SuzanneBAnderson

About Suzanne in her own words:

I began my journey with debilitating chronic illness in my early thirties. I had five young children in tow at the time which made it all the more heart-wrenching. I spent most of that decade attempting to regain my ability to thrive. I was ever so grateful for a small window of reprieve during my early forties, but when I was forty-seven it came to a screeching halt. All the ground I gained came crumbling down with such force I didn’t know if I would ever bottom out. When I finally did it felt as though I was buried in the rubble of an earthquake. I can’t imagine these subsequent years without the support of my online community. Not only do I consider these dear, dear ones my friends, but I consider them my family. They have been my life-line many times over and over again.

If you are walking a Gauntlet or are close to someone who is and would like to contribute to our Thursday community please email me at mkayesnyder@gmail.com, and I will send you the instructions for submitting. Share with anyone you know who might like to join our Gauntlet Story Feast. (Please use the hash tag #GauntletStoryFeast when sharing so we can find and follow one another.) Our Hope remains.

Photography by Cindee Snider Re. Used with permission.
Quote taken from Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life.

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