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

Laundering Wishes

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“Wishes of one’s old life wither and shrivel like old leaves if they are not replaced with new wishes when the world changes. And the world always changes. Wishes get slimy, and their colors fade, and soon they are just mud, like all the rest of the mud, and not wishes at all, but regrets. The trouble is, not everyone can tell when they ought to launder their wishes. Even when one finds oneself in Fairyland and not at home at all, it is not always so easy to remember to catch the world in it’s changing and change with it.” ― Catherynne M. Valente, The Girl Who Circumnavigated Fairyland in a Ship of Her Own Making

Wishesedited

It’s a sunny New Year’s Day morning. Each of us woke on our own time frame. This is always gift. My “nest” chair is back by the window after taking down the Christmas tree and decorations yesterday. I am snuggled under my quilt with Twixie at my side, and my prince brought me a cup of coffee perfectly made the way I like it. After breakfast our family gathered around in the living room to begin the new year in our fifth year of making wishes.

Someone gave our family a beautiful silver ornament in December, 2010. It is engraved with the word “WISHES.” It hangs on a bright red grosgrain ribbon and opens to the words “DO COME TRUE.”

It was given to us in a year we had trouble imagining anything other than the hard day we were living. I had a difficult hysterectomy followed five weeks later by Danica’s second brain decompression and fusion. Danica was in a body brace and a wheelchair when we were finally allowed to leave the hospital. I had to quit my job doing database work for a company in DC to care for her 24/7. I made more money than Dan. My job was essential to our survival. We lived at my parent’s house the first month we returned from Cincinnati. Finally, we made the decision to return to our home for the holidays despite the challenges the stairs presented. During my hysterectomy my doctor found my colon infiltrated by endometriosis. He closed me up but told me I needed to see a surgeon at Cleveland Clinic. Instead of finding any relief from the first surgery my personal pain formed a crescendo compounded by the burden of lifting Danica in and out of her wheelchair and carrying her up and down our steep stairs. This was the first year we began to taste YOUR love for us. We were only able to go home for the next six months because of the support of many who knew our entire family could not begin healing without some months alone in our own space. We were able to stay until May, 2011.

We had been promised a Disney wish trip for our Danica sometime when she was well enough. New Year’s Day, 2011 we couldn’t fathom this happening. Four long months later Danica was given a release from her little body cage and her chair, and we planned our trip. Four weeks after my colon resection I was traipsing around Orlando trying to smile and keep the wish looking like a dream come true.

This ornament has become a family tradition. It is very special to look back at the one thing we hoped for in the coming year. We write our wish on a little strip of white paper with the year. The girl’s wishes have mostly been childlike. Two years in a row Delaney wished for a puppy. This finally came true! Danica’s wishes began like a three year old’s would. She wanted to meet the Disney princesses, and she did. Last year Delaney’s wish was also material as I would imagine an 11 year old’s would be. She wanted a cell phone. Danica’s took me off guard. She wished “for mommy to get better.” Every single year Dan and I have wished for the same thing. We want healing. Over and over again we’ve hoped for a year with less days hurting and more days living. 2014 was definitely a year of this.

We don’t share our new wishes with one another until New Year’s Day next year. My wish this morning was something completely different than healing, and I feel confident the rest of my family made laundered wishes too. Something has shifted in us all. We are changing and being changed. We are growing in faith and wanting first things. We are less cynical and more expectant. We have seen the goodness of God shine through every darkness. We have hope that is so much more than a wish. It is rooted in a belief God wants to bless us. He wants us to know Him more. He wants us to trust Him more. He wants us to praise Him more.

Bleached white wishes because of Jesus.

Do come true

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The Right Instructions

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“You mustn’t wish for another life.
You mustn’t want to be somebody else.
What you must do is this:
‘Rejoice evermore.
Pray without ceasing.
In everything give thanks.’
I am not all the way capable of so much, but those are the right instructions.”

― Wendell Berry, Hannah Coulter

Number 5

I’m falling into bed after my fifth plasmapheresis treatment. Today the dialysis floor was overflowing. They took me down to a room in an empty corridor in the ICU. I began to panic a little more than usual. One of my lines wasn’t connected correctly and blood escaped in bright red spatters. My veins and heart keenly felt the flow of life and plasma leaving and bags of albumin returning. I shivered under a pile of blankets. I was alone. My dad dropped me and Dan was coming to get me after work. I did not have my usual nurse. The woman today had only done this treatment one other time by herself. She was interested in learning, and it exhausted me to communicate even the most basic parts of my story in a way she could understand. Instead of shining the beauty of His saving and sustaining me day by day I was dim. All that telling made me wish I was somebody else. It made me wish for another life.

This is when hiding God’s Word in your heart counts the most. Lamentation 3:21-26 covered me.

Yet this I call to mind
and therefore I have hope:
Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.
I say to myself, “The Lord is my portion;
therefore I will wait for him.”
The Lord is good to those whose hope is in him,
to the one who seeks him;
it is good to wait quietly
for the salvation of the Lord.

Rejoice now?

Pray no matter what?

Give thanks for this?

These are the right instructions.

I am incredibly grateful for those of you who carry me on my mat to Jesus in these times. Your love and encouragement make me braver. Your support means the world to my family and I. We have never felt alone.

Our Hope remains.

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Today It’s Just Not So

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Justnotso

It is Christmas Eve morning. I’m sitting here in the glow of the tree lights with a TENS unit on my left arm and hand. A nurse hit my main nerve during a blood draw on Monday. I’ve had electrical shock pain every time I move my thumb since and my left arm is pretty much useless. I was back to the hospital before 7am this morning for more labs. The unit just called and wanted me to wait until 4:30pm for treatment. I broke down in sobs. They are going to try to get me in at 1pm. I will come home and fall into bed when it is finished.

In the past few weeks I’ve read post after post written by women on the subject of showing themselves grace when it comes to the crazy busy pressure of their family traditions, gift buying, gift wrapping, cookie making, parties, programs and their expectations of creating the overall look and feel of Christmas for their families.

I would give anything to be healthy enough to participate in this adrenaline fueled season. ANYTHING.

My Dan just finished vacuuming. He is emptying the dishwasher while he runs the first of several loads of clothes that need laundered. We have no food in our refrigerator. He will brave the grocery store for a few things today. Money is tight. He gets paid Friday. This is no different than any other Wednesday before pay day, but it is Christmas. The girls will go with him because my mom will be taking me to the hospital.

The girls Santa gifts, one each, are in a Rubbermaid high up in the garage. Dan will have to find time to hide away and wrap them with special paper. This is something I love to do. We usually have party food as a tradition on Christmas Eve. I make h’ordeuvres, crusty bread with brie and crab dip. Dan and I toast with a glass of wine. We open Christmas jammies. We sit snuggled around in the twinkle of our tree and light the last Advent candle while we read THE Christmas story. Danica is still a believer. She would write a letter to Santa and carefully put out his treats on a plate with a glass of milk and scatter carrots and reindeer food in the back yard. The girls go to bed early and don’t dare leave their rooms. It’s finally one more sleep. Dan and I wait until we know they are out and then bring the gifts from us and Santa out and stuff their stockings. We feel close. We know this season is a line break in our family story of loss and disappointment. We have tried to make it something meaningful and Christ focused and joyful no matter what.

This year is different. It seems even harder than 2011 when I was recovering from brain surgery and fusion and came home to my parent’s basement Christmas Eve for twenty-four hours with Dan and the girls. I was in such a fog I barely remember even being there. I remember my pain and short temper but knowing Delaney and Danica were mostly oblivious because so many people stepped in to surrogate that year. My dad played Santa and gifted us our dear Twixie. This made everything okay.

Dan is waiting for someone from Craigslist to come and buy his weights. They were his birthday present this year. Working out is his only hobby and the one thing that keeps him okay mentally. I don’t think it is a “Gift of the Magi” thing. He is just feeling the pressure. He’s thinking of a new year with my trip to Maryland on January 7th for a scan of my recent fusion and a visit with my neurosurgeon. He’s thinking of my canceled bone density scan and mammogram that will need to be done in January on a new deductible. He’s thinking of my cardiologist appointment in Toledo. He’s thinking of our first quarter trip to Cincinnati for Danica’s scans and visits when we still owe them from last year’s trip because it is always the beginning of her personal deductible. He’s thinking of how we floated a few bills to buy presents for the girls. He never thinks about himself.

I hurt for him most. He has loved past what someone should be asked. He has sacrificed every possible personal goal for a career or personal pleasure to be my husband and a father to our girls. Any moment he is not at work he is here serving us. Sunday he gently washed my hair over the sink, because I cannot shower. I looked straight into his eyes to understand how each assault on my body is one on his heart. We are one even though physical union is almost impossible in these times of illness and treatment. He has never once complained or made me feel an ounce of guilt about the long seasons of our life when the physical part of our marriage is completely unfulfilled. I ache. He aches. He would never walk away. When all the busy work is done, and a day is so hard we can barely breathe, he will curl up and sleep. He says sleep is the only place he isn’t hurting.

I appreciate all the notes of love reminding me that Satan is attacking my mind and heart with sadness. Thank you for pointing me to Jesus. It is not expectations about Christmas that cause my heartache or even the very real feelings of failing my husband and children when it comes to layering years of tradition as a foundation for their lives. Our walk is painful no matter what time of year.

I do not have amnesia. We do not have amnesia. God has provided for us every day. He has loved us through you over and over again as I have had treatments and surgeries. We are ever blessed in the midst of this never ending journey.

We are grateful for your love this season.

A friend brought cookie dough and decorating icing and sprinkles since I have not been well enough to bake. Dan and the girls did this together last weekend. She and her family also brought the girls a little money to shop for Dan and I and one another. Dan took them last Saturday, and it brought them great happiness. I’ve had many little meaningful gifts from friends reminding me to be strong and never give up. Family has sent gifts so there is an abundance of things for the girls to open under our tree. Everyone knows presents can’t fill the ache, but this is their way of saying they care. My dear Janet and her husband are cooking for us today so we will have a yummy dinner tonight. My parents have taken turns driving me in the early mornings for labs and afternoons for pheresis. This love reminds us we are not alone.

Right now is when I am supposed to circle around to something didactic about Jesus.
I should tell you I’m ever hoping and finding strength and grace minute by minute.

Today it’s just not so.

My God hasn’t changed a bit.
He is holding all this in His hands.
He wrote my days when there were none of them.
He is working all things together for my good, Dan’s good, Delaney’s good and Danica’s good.
He is working all this for His glory.
It is true even when I can’t feel it at all.

This is the gift we will keep unwrapping long after the last ornament is put away.
Day after day; week after week; month after month into 2015 we will wake and run to the foot of another tree. We will sit beneath Calvary and see “When (we) are in the presence of God, it seems profoundly unbecoming to demand anything.”–Francis Shaeffer

Merry Christmas dear ones.

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When God Whispers

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“If there is a pattern in Scripture regarding whispers, it is that we serve a communicating God- a God of words. He created with a word, He healed with a word, He encouraged with a word, He guided with a word, He prophesied with a word, He assured with a word, He loved with a word, He served with a word and He comforted with a word. Throughout all of history, God has communicated, and He still is at it today. The issue isn’t whether or not God is speaking; it’s whether we will have ears to hear what He says.”–Bill Hybels

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Since my first pheresis treatment on Saturday I’ve had trouble hearing God. Overcome with depression this morning I set out to find His voice in this valley of pain.

The story of God’s provision for Elijah in chapter eighteen of I Kings has often encouraged my heart. I love how God continued to feed the widow, her son and the prophet with just a little flour and oil. When the son became ill to the point of not breathing Elijah pled with God about the “unfairness” of bringing this calamity upon a woman who had so faithfully obeyed. God allowed Elijah to heal the boy through His power. I think if you or I had witnessed one or both of these miracles we would boast there is no way we would soon forget God’s faithfulness and certainly would trust Him with any new challenges that might crop up.

In chapter nineteen Elijah was on the war path. Full of the Spirit he killed all the false prophets with a sword. The word came to him that Jezebel was plenty mad and out for his blood. Just like that Elijah was overtaken with fear and ran for his life. He traveled out in the desert, left his servant and went a day further. He found some shade and got real with God. “He came to a broom bush, sat down under it and prayed that he might die. ‘I have had enough, LORD,’ he said. ‘Take my life; I am no better than my ancestors.’ Then he lay down under the bush and fell asleep.”

This despair came from the euphoria of a battle won being followed immediately by a hardship that seemed to close the door on everything he had prayed for, hoped for, dreamt of and lived for. This is exactly where God brings His children to understand what they REALLY believe.

Once again we see the compassion of God as He sent an angel to care for Elijah’s physical needs. He ministered to him with several meals between naps until Elijah’s strength and resolve began to return. Elijah made the forty day journey to Mt. Horeb and set up camp inside a cave. When he woke God confronted him about his complacency and discouragement. I love how God said so bluntly to him, “What are you doing here, Elijah?” I know God has woken me up and said this to me before. “Seriously, Monica, What are you doing here? Why are you so afraid? Don’t you remember my compassion and lovingkindness? Don’t you think I have this plan worked out for my glory and your joy???” Elijah’s answer makes me chuckle a little. It’s like a child to answer the way he did, not remembering God’s question was rhetorical. He knows all. It wasn’t an information seeking question. Still, he said, “I have been very zealous for the LORD God Almighty. The Israelites have rejected your covenant, torn down your altars, and put your prophets to death with the sword. I am the only one left, and now they are trying to kill me too.”

God answered with a request, “Go out and stand on the mountain in the presence of the LORD, for the LORD is about to pass by.”

As if food out of nothing, the power to raise a child from the dead, strength to slay soldiers and just having his own personal angel minister to him was not enough God let him know He was going to show Him something only one other man, Moses, had ever seen. He would show him a real glimpse of the God of Heaven and earth.

Here’s the best part.

I can completely feel Elijah’s heart beating out of his chest as he waits.

Then a great and powerful wind tore the mountains apart and shattered the rocks before the LORD, but the LORD was not in the wind. After the wind there was an earthquake, but the LORD was not in the earthquake. After the earthquake came a fire, but the LORD was not in the fire. And after the fire came a gentle whisper. When Elijah heard it, he pulled his cloak over his face and went out and stood at the mouth of the cave.

A gentle whisper.

Not in the wind.

Not in the earthquake.

Not in the fire.

A gentle whisper.

God asked him again, “What are you doing here, Elijah?”

The realization set in. Elijah knew what God was trying to say. It wasn’t going to happen the way he dreamt. God’s plan was different all along.

Elijah wanted a spectacular showing of God. Instead God literally crushed Elijah’s own idolatry of needing his ministry to play out his way, because He wanted him to have greater joy. For all intents and purposes God ended Elijah’s ministry and passed his legacy on to someone else.

God seems harsh. Or does He? His provision for Elijah had been RELENTLESS. God’s purposes for his life were clear cut.

God’s glory.

Elijah’s greater good and ultimate joy.

Fast forward to the New Testament and chapter nine of Luke. Read the entire chapter. Wow, it’s good. But beginning in verse twenty-eight it begins to tell the story of the transfiguration of Christ.

About eight days after Jesus said this, He took Peter, John and James with Him and went up onto a mountain to pray. As He was praying, the appearance of His face changed, and His clothes became as bright as a flash of lightning. Two men, Moses and Elijah, appeared in glorious splendor, talking with Jesus. They spoke about His departure, which He was about to bring to fulfillment at Jerusalem. Peter and his companions were very sleepy, but when they became fully awake, they saw His glory and the two men standing with Him. As the men were leaving Jesus, Peter said to him, ‘Master, it is good for us to be here. Let us put up three shelters—one for you, one for Moses and one for Elijah.’ (He did not know what he was saying.) While he was speaking, a cloud appeared and covered them, and they were afraid as they entered the cloud. A voice came from the cloud, saying, ‘This is my Son, whom I have chosen; listen to him.’ When the voice had spoken, they found that Jesus was alone. The disciples kept this to themselves and did not tell anyone at that time what they had seen.

WHAT? How did I miss this all these years? These were the two men who had been granted a glimpse of God’s glory in their earthly ministries and both denied their deepest earthly dreams. It was as if God held out their greatest treasure to them in His almighty hand and then said, “Do you see it? You can’t have it NOW.” They appeared in glorious splendor talking with Jesus. Elijah was finally shown “the light of the knowledge of God’s glory displayed in the face of Christ.”–II Corinthians 4:6

It all makes sense.
This is how God works.
He often chooses to go after our greatest treasures and leave us with nothing else but a quiet whisper.
I have to admit. I am often pitching a fit too loudly to even remotely hear His voice.

Saturday’s plasmapheresis treatment was exhausting. This weekend has left our family aching. If I’m honest I’ve had hours when complete amnesia of God’s faithfulness comes over me. My heart cries out like Elijah’s, “I’ve had enough.” I wonder if God will ever allow me to see the desires of my heart fulfilled here on earth. Dan is sad in a way I can hardly bear. Delaney is feeling the weight of our life more than ever, and I worry it will breed resentment not more love. Danica is the only one childlike enough to still float. We bear this burden as seasoned warriors. We speak of it out loud. There is no pretending here. As Dan and I settled into our bed just now he said, “Let’s Notebook it.” If you know Nicholas Spark’s sweet love story then you understand. We would like to slip away together.

I’m looking for some crazy answer to come in on wind or an earthquake or a burning fire. He’s showing Himself daily in provision and healing and strength to fight and even angels who care for me with earthly graces. What if He’s holding out in His hand this thing, my health, the ability to ever really function normally again and then telling me, “You can’t have it now.”

This is where God has brought me to understand what I REALLY believe. What I do in these moments means everything.

God will not leave me here in these disappointments. I have a sure and certain HOPE. I will see Him face to face, and when I see Him I will be like Him. He has gone to prepare a place for me. Home. Health. Enjoyment forever. Exceeding, abundantly more than I could ever ask or think.

God is relentlessly pursuing me and whispering in my ear. “Do not lose heart. He that endures to the end will be saved. My strength is made perfect in your increasing weakness. I will be glorified the most and your joy will be the greatest when this is finally over.”

You are my God.
You are impossible to overestimate.
I believe in Your whisper tonight.

pheresis

Treatment two is tomorrow. Dan will work. The girls will go to my parent’s house. My dad will pick me up at 6:30am and take me to the hospital for labs necessary before the okay to proceed. My Janet will take me back at 1pm to begin pheresis. Thank you for your prayers.

Smoke photography by Cindee Snider Re. Used with permission.

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Hello Courage

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“But now you must be strong and not let your courage fail.”–II Chronicles 15:7

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There was very little sleep last night. The intracranial pressure so bad I had to focus on not throwing up. I tried not to cry. This makes the pain worse. My legs twitching kept me restless. My joints burning made every move agony. My mind and heart assaulted by fear and anger and self pity. This is what happens when fighting for treatment takes weeks from sudden onset. All the ground I feel I’ve covered towards healing and happiness is swallowed by more despair.

When I can’t pray I turn to music. Playlists of hymns and spiritual songs fill my thoughts with truth of God’s faithfulness and love and turn my eyes towards Jesus. I also turn to Scripture I’ve memorized. Reciting the promises of God bring my intense fear into perspective.

This morning I pushed my body out of my bed to get Danica ready for school. My head feels like it might explode. I believe this is not because perhaps my shunt isn’t working or the changing pressure due to weather but because my brain is swelling. All these things combined create the perfect storm of suffering. Dan rose very early to take Delaney to school for a field trip to Columbus. The roads were slick. He returned to make coffee and Danica breakfast, and he oozed fear. Everything our family has been through breeds this feeling that the worst will happen. We wrap our children in a bubble wrap of sorts that others cannot understand. Danica’s first words to me were about how her head and tummy hurt. I wanted to keep her home but how could I? She missed her Thanksgiving party and her Christmas program from illness. Her little heart was longing for her first grade Christmas party. She won’t have a parent there. Again. She said as she walked out the door with Dan in her swishy gold skirt, “Mom, I want to stay home, but I want to go.” How could I keep her home knowing I need to have my cath placed today and perhaps even have my first treatment?

My dad is on his way to get me. I am terrified of this puncture and placement. I am heartbroken this is happening to my family and I the week of Christmas.

I read this from Elisabeth Elliot in my quiet after everyone left.

Fear arises when we imagine everything depends on us. We assume burdens God never meant us to carry. How much better to take whatever is troubling us immediately to God, confess our helplessness and perplexity, and do the next thing.

Today I will do the next thing. Will you please pray I will lay my burdens down and rest in His faithfulness and great love for me? Will you ask God to comfort my husband, protect my children and give us all comfort and peace in this?

Here is my prayer in Elisabeth’s words.

Lord, You well know how my flesh and my heart shrink from suffering, and how prone I am to forget that I once determined to follow one who was crucified. Yet in Your human flesh, dear Savior, You, too, shrank from the bitter cup your Father offered. I humbly ask You to strengthen my weakness, forgive my hesitancy, and open my understanding that I may gladly receive the small share of pain which is mine.

Here is the song I played over and over last night.

Earth has no sorrow Heaven can’t heal.

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Too Much To Ask

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it seemed too much to ask
of one small virgin
that she should stake shame
against the will of God.
all she had to hold to
were those soft, inward
flutterings
and the remembered sting
of a brief junction–spirit
with flesh.
who would think it
more than a dream wish?
an implausible, laughable
defense.

and it seems much
too much to ask me
to be part of the
different thing–
God’s shocking, unorthodox,
unheard of Thing
to further heaven’s hopes
and summon God’s glory.
–Luci Shaw

Tonight I am facing plasmapheresis treatment again. I could have my cath placed as early as tomorrow. It is hard, and it brings risk, but it has also brought me the most healing and the best months of life. My counselor said today, “Do you know what I’m hearing? I’m hearing you fighting to be well because you have purpose.” It is true. I am completely committed to finishing the book in the first quarter of 2015. I need some measure of strength and health to do this.

I wrote in an earlier post the reasons I don’t ask God “Why?” anymore. Still, I wonder if maybe, just maybe. this is too much to ask of me. I wonder if it is too much for God to ask of my husband and children. I wonder if it is too much to ask of all of you who have loved and prayed and supported us for years on end in a story that is never finished.

I remember.
This is more than I deserve.
This too is Grace.

Madeleine L’Engle wrote,

We are all asked to do more than we can do. Every hero and heroine of the Bible does more than he would of thought it possible to do, from Gideon to Esther to Mary. It is only after we have been enabled to say, “Be it unto me according to Your Word,” that we can accept the paradoxes of Christianity. Christ comes to live with us, bringing an incredible promise of God’s love, but never are we promised there will be no pain, no suffering, no death, but rather that these griefs are the very road to eternal life. In Advent we prepare for the coming of all Love, that Love will redeem all brokenness, wrongness, hardness of heart which have afflicted us.

Tonight I will beg for a heart as willing as Mary’s. Yes, God, even this strange thing I do not understand. Do this thing in me. Use it for Your glory. Burn through every selfish ambition I have to be healed for personal gain. I trust you with this body. I trust you with my family. I trust you with our needs. I trust you with this book. I trust you with my eternal soul.

Be it unto me.

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Calvary Stills All My Questions

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Calvary

I have been reading Amy Carmichael’s Rose from Brier again this week. Of all the gems in this little book there is one chapter I run to over and over again. Through the years it has taken root in my head and heart and finally silenced my “Why God???”

What, then, is the answer? I do not know. I believe that it is one of the secret things of the Lord, which will not be opened to us till we see Him who endured the Cross, see the scars in His hands and feet and side, see Him, our Beloved, face to face. I believe that in the revelation of love, which is far past our understanding now, we shall “understand even as all along we have been understood.” And till then? . . . There is only one way of peace. It is the child’s way. The loving child trusts. I believe that we who know our God, and have proved Him good past telling, will find rest there. The faith of the child rests on the character it knows. So may ours; so shall ours. Our Father does not explain, nor does He assure us as we long to be assured. . . But we know our Father. We know His character. Somehow, somewhere, the wrong must be put right; how we do not know, only we know that, because He is what He is, anything else is inconceivable. . . There is only one place where we can receive, not an answer to our question, but peace–that place is Calvary. An hour at the foot of the Cross steadies the soul as nothing else can. “Oh Christ Beloved, Thy Calvary stills all our questions.” Love that loves like that can be trusted about this.

A Father who loves me enough to give His only Son to die for me can be trusted. And so once again I lay it all down here at Calvary. I surrender my body to Him, a living sacrifice, and offer thanksgiving for this pain which helps me see more clearly the price that was paid for my sin. I breathe gratitude for an affliction that keeps my eyes fixed on things above and not on this earth.

I am slipping further away from the health He lovingly granted through my last plasmapheresis treatments in early September. I have been very ill since I returned from Texas. I am on my third kind of antibiotic but my blood titers are back up. This means I was reinfected at some point. I will see the doctor who helped me arrange local outpatient pheresis tomorrow afternoon. The risks of pursuing this again are clear. The beautifully designed network of veins and arteries in my body are faulty. They are lacking the collagen to keep them strong. They heal poorly after being punctured or cut. The only way this treatment works is using a catheter that is large enough to allow blood and plasma to enter and leave your body at the same time. It is placed in my jugular or large artery very near my heart. Every time we slice we are taking a risk. I weigh this with my desire to have more months of wellness and perhaps a body that eventually learns to fight infection on its own. I believe this can happen. This is how I pray for healing.

Delaney’s choir program is tonight. Her outfit we paid extra shipping for has not arrived. (Please God, could you send UPS before 6:00 pm???) Once again someone will send me a disc with a video of my darling girl singing. I will be missing life. This loss builds into a crescendo when it has been years and years of what often feels like failure. This is what I wanted to do well. This is what I had finally surrendered to as my “High Calling.” After working outside the home in search of affirmation and success God finally healed my divided heart and focused it on being Dan’s wife and Delaney and Danica’s mother.

As I sat at the foot of the cross today I remembered my pride and self sufficiency before all this began in earnest. I see how He has lovingly confronted my striving heart with deep need to humble myself and become dependent on others, including my husband and children, for even very basic things. I look full in His face. I don’t ask “Why?” His love for me stills this question forever.

“Love that loves like that can be trusted about this.”

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A River I Could Skate Away On

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“For the choir director: A psalm of David, regarding the time he fled from Saul and went into the cave. To be sung to the tune “Do Not Destroy!” Have mercy on me, O God, have mercy! I look to you for protection. I will hide beneath the shadow of your wings until the danger passes by.”–Psalm 57:1

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It’s been a day of fitful sleep. I am trying to heal even though after all these years I’m not sure this is something you can “try” at. In my waking I feel angst and a gnawing worry I can’t explain. I haven’t had these feelings for months. I know for sure they come with the sickness worming into my brain.

I feel sad about Danica and I missing her program last night. It seems another golden moment was lost in a sea of memories of being sick and in bed.

We are missing a Christmas party tonight. Dan and I need to see one another like this. We need to dress up. I need to shave my legs and put on lipstick. We need to flirt in the company of others and slip out early because we are wildly in love. We need a connection that is not me needing and him serving. I want him to see me for even a few hours as laughing and lovely. I want to lay so close to him we are one. Do you know how little kissing happens when you have Strep throat for years on end?

Delaney needed to go shopping today for a black skirt and a white shirt for her choir recital on Thursday. I couldn’t take her. Once again we searched online and prayed something we chose will fit. We payed extra for shipping to make sure it will arrive on time. No fun. No bonding and a Starbucks after. Instead we had a fight about picking the cheapest thing and about tights. I hated it. I hate how it feels to still be so unable to do “real” life for her.

I’ve ached to be back to corporate worship after my genuine encounter with community at my retreat. Tomorrow I will miss another Sunday. I’m beginning to think regular church attendance isn’t ever going to happen for me. Dan takes the girls, but they are floating in and out. I am not along to build the relationships, get us involved in groups or open our home for hospitality.

Monday I head to the hospital for a bone density scan. After five years of no estrogen these bones are as weak as my collagen. It’s a cascading betrayal of my body. Thursday I see my gynecologist. There’s a small lump. I’m thirty-nine. All the normal things are piled on top of my ever complicated health profile.

I am called to count it ALL joy. Even this. Sitting at the foot of the cross how can I demand what I think this season should look like. How can I demand anything?

I have Joni Mitchell singing in my head.

It’s coming on Christmas
They’re cutting down trees
They’re putting up reindeer
Singing songs of joy and peace.
I wish I had a river I could skate away on . . .

I believe God meets me here.
He knows my hurting heart.
He understands my physical pain and my mental anguish.
He gets how badly I want to run away.

. . . I wrote the above post on Saturday. Like much of what I write I wasn’t brave enough to publish it. I’ve been reminded by many since. This honesty is why you read here. I rescheduled my bone scan. I’m just not feeling better and even worse in some ways. I’m sad. I’m afraid. He is the same.

I read this morning from Paul David Tripp’s devotional book New Morning Mercies.

“If Christ is your life, you are free from the desperate quest to find life in situations, locations, and relationships . . . So instead of wasting time on that endless quest for life, (or the “trappings” of Christmas) you have been invited to enter into God’s rest for the rest of your life. Rest in your identity as His child. Rest in His eternal love. Rest in His powerful grace. Rest in His constant presence and faithful provision. Rest in His patience and forgiveness. Rest.”

I won’t run away. I’ll run under the shadow of His wings and find refuge there. I’ll rest.

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Nothing is ever black and white. A giveaway for zebra heroes

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“Heroes didn’t leap tall buildings or stop bullets with an outstretched hand; they didn’t wear boots and capes. They bled, and they bruised, and their superpowers were as simple as listening, or loving. Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else’s. And maybe that one act could lead someone to rescue you right back.”–Jodi Piccoult, Second Glances

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“When you hear the sound of hooves, think horses, not zebras.”

This phrase is taught to medical students throughout their training.

In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.

But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions. Ehlers-Danlos Syndrome is considered a rare condition and so EDS sufferers are known as medical zebras. This identity has now been adopted across the world through social media to help bring our community together.

This morning I am keenly feeling my stripes.

My husband says I’ve had “rock star” access to almost every specialist you could find for my complicated Ehlers-Danlos condition. My neurosurgeries have been performed by arguably the most skilled and compassionate leader in the search for the most whole life for EDS patients. I see the best cardiologist. I’ve explored all the other aspects of this DNA mess including genetics, hematology, gastroenterology, mast cells, gynecology and autoimmune disorders. This list is not exhaustive, but it gives a small window into how systemic this disorder can be in some patients, especially those of us with mixed type EDS. Because of Danica’s early Chiari diagnosis and her first brain decompression failing I was thrust into a life of research and battles in a war I would have gladly given my own life for. I call Danica my first angel in this journey, because if it were not for her suffering and her bravery I may have never found my own diagnosis explaining the decades of pain I had already walked. I call YOU my second angels, because you helped my family and I untie impossible knots by listening, loving, praying, supporting financially and always Hoping.

I sometimes wonder what it was like to be chronically ill before the internet. It has really only been in the last ten to fifteen years we have been able to search our symptoms before a doctor’s appointment or run to WebMD after a diagnosis and then find a support group immediately of people who have the same illness we have. We have access to medical research and journals that were only available in print and to a select few prior to the information age. We’ve become experts in ways even our best doctors cannot. More recently social media emerged. In addition to the wealth of knowledge we also have countless facebook groups, public and private, to ask questions about our diagnoses, share information on the best physicians and our experiences with them, post imaging and swap medical articles related to our illnesses. We have hashtags for our conditions. We create YouTube videos to raise awareness and give others outside our sick community a window into what day to day life is like. We create fundraising pages to share and be shared in an effort to pay some of the exorbitant price of continuing our fight for the most whole life. We have caringbridge pages to keep family and friends updated during surgeries and treatment and some of us have chronicled our journey with great candor through personal blogs. Just when HIPAA is cracking down even more harshly in medical settings, we, as patients, are going further and further down the road of willingness to open up about our personal health information with anyone and everyone who will listen.

I was one of the early ones in some of these groups. There were just a few zebras who had gone before me. Now, there are thousands and more are being diagnosed every day. The awareness is working. One by one our general practitioners are learning through us we do not just have fibromyalgia, migraines and psych issues. We are fundamentally broken at the cellular level in a way that affects every part of our bodies.

My old blog Team Danica had thousands and thousands of visitors because I was writing faithfully about our journey diagnosis by diagnosis in a narrative that explained this life in the reality of the pain but also through the lens of Hope. It documented the progression of comorbid conditions and the fight to see specialists who believed in their connection to EDS. Google search engines brought almost anyone typing in key words related to Chiari or EDS. People began emailing me and finding me on facebook and asking for help. I will admit in times when I was most ill I could not support all the people who needed help. I felt guilt but also sadness there was no place for them to go. A dear fellow Zebra created a private place on facebook called “Beyond the Measurement. Chiari, EDS, & Chiari w/EDS.” When I joined I know we had under 100 members. Today there are 2,609 members and exploding. It is a place of heroes rescuing heroes. I am proud of Robin Armstrong Griffin, her vision and the countless hours she donates to keep this safe and nurturing place going.

My book, Gauntlet with a Gift, will be the first book in narrative form taking a newly diagnosed person through the journey in medical diagnoses and specialists but also through the mental, emotional, relational and financial struggles we fight daily. It is a beautiful and sometimes unbelievable story meant first for my fellow warriors, second for the people who walk along side us trying to understand, and lastly for anyone wanting to be inspired by hidden gifts in a gauntlet of suffering that truly has no end in sight.

When I was in Texas on retreat one of the first people I met was a dear mom who has four children in the early stages of diagnosis and treatment. I was praying for affirmation from God about the direction of Gauntlet with a Gift. One of the reasons I wanted to attend this retreat was knowing Marilyn McEntyre was leading sessions. Her background in medical humanities made her a perfect resource for this work of love. Once again God answered exceeding, abundantly above all I could have asked or thought through this connection. The last day of the retreat, after we had spent rich time together on Saturday, she brought me her book Patient Poets. Illness from the Inside Out as a gift. She did not know I purchased this book from the Laity bookstore and had been pouring over it. I have already bought copies for friends and am giving one away here today. It explores the emotion behind our lives of pain and our fight for being just a little more well.

The past week I’ve spent time on many phone calls with people all over the United States looking for the wisdom I’ve gained because I am steps before them in this fight. I have directed two local woman referred to me from friends who are very sick and desperate for a real reason. I know they have connective tissue disorders. Last night I logically walked a friend through the next thing she needs to do. She is a woman who knows all I do but has less support and different circumstances making her battle more fierce. When you can’t lift your head off the pillow it’s so hard to do the next thing. I am also watching my younger sister finally realize she has many of the same conditions. Months ago I bought her an Aspen collar. She is waiting for a May appointment with my neurosurgeon. Every time I see her I feel a form of post traumatic stress, because I want to give her all the access I’ve had. Her story may look very different than mine. Knowing all I know I just want to hand her any relief I can.

I am feeling compassion fatigue. God is showing me the best and most beautiful way I can help is finish this book. This is why I stopped writing at Team Danica and moved here. It is also why at the beginning of the year I will have to turn off notifications from the support groups, silence my phone and do the very hard work of retelling our story along with detailed medical information and vignettes of the caring physicians and other patients who have saved us, all heroes untying our knots.

I was blown away by the nominations posted in the comments of my Big Box Giveaway. If you haven’t read them take a stroll over there. I know I said no more giving this year, but I was inspired to do one more after all the talks I had last week.

Included is a beautiful piece of Kelly Rae Roberts art framed and behind glass with the message “I choose hope.” A copy of Marilyn Chandler McEntyre’s book Patient Poets, mentioned above. A Zebra mug like the one my sister recently gifted me. It has a zebra on the front and our motto on the back, “Nothing is ever black and white.” Also my favorite Tazo tea, Joy. a perfect blend of black and white tea and a little zebra ornament for the tree. Oh how difficult the holidays are for us!

Here’s how to enter for the special zebra gifts you see here to be mailed to one of your own heroes.

1. Comment below on this post about an EDS or Chiari hero who has inspired you and helped untie your impossible knots. I will be randomly choosing a winner after midnight Thursday so I can mail this care package on Friday.

2. Many of you are personal friends on my Monica Roberts Snyder facebook page or followed Team Danica. Click on the facebook link at the top right of this blog and “like” my new writer page. This is where you will get updates on the progression and publication of Gauntlet with a Gift. Subscribe to receive new blog posts by email on the right side of this post.

3. Share this with your zebra friends! Our Hope remains!

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Leaning Toward Jesus

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“So when those bad things happen, if you lean towards Jesus–if you incline toward Jesus, if you rest in Jesus–you get the Gift of Jesus, like an ark of love, holding you, carrying you, raising you gently up through any flood of sadness that fills the world.”–Ann Voskamp, Unwrapping the Greatest Gift, Advent Day 4, “God’s Tears”

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It has been a hard day. I am sick. What began last week as a respiratory thing I thought I was fighting quickly turned into something uglier. It started with brain pressure Tuesday night and ebbed into a super deep sore throat, headache behind the eyes, neck on fire, heart that hurts along with frantic OCD behavior, insomnia and despondent thoughts. If you are new here and did not follow my old blog you may not understand this is not just an unfortunate bout of illness. This is an attack on my body from a formidable opponent. A simple infection has the power to snake slowly into my brain and settle anywhere in my connective tissue. It has been four months since my last plasmapheresis treatment.

My husband had to leave work to get my girls from school. My appointment was long. I got a first shot of antibiotics and will go back tomorrow for another shot and take my Danica who most likely has Strep as well. My incision is hot and angry. The concern is cellulitis, Strep or Staph (I’ve had MRSA multiple times) inside my incision. When I went to get my prescriptions they weren’t ready. Salty tears ran down my cheeks. I came home as it was getting dark.

There were still mom things that had to be done. Danica needed a bath and her hair washed. Her Christmas program is tomorrow night. We got her dress out and little sweater and tights. I went to find a pair of dressy shoes, and there were none that fit her. She is my hand-me-down girl. We rarely buy her anything. Between Delaney’s old clothes and her cousin Mia and friends at school passing things to us, she is well dressed. We have half a dozen pairs of cute dress shoes in the bin. Her little feet just slid right out of every pair. More tears. Add stopping at Target after the doctor tomorrow at 8:20 am to grab dress shoes to our list. My dear friend Christy, who lives in Chicago, texted to check on me. She offered to run out and buy shoes and overnight them. Seriously, in this oh so hard life God has surrounded me with the most loving people. Of course I told her that was ridiculous. I loved it because it was so insane. That’s how Jesus loves us. No matter how sick Danica and I are we both need this Christmas program; just fifteen minutes of her on a stage and me in a pew and the feeling of normal.

After the day we all had, the last thing we wanted to do was gather around for Advent. Especially me. This is exactly why the discipline of ritual is vital. We need it most when we don’t feel it at all. It was my night to read, and I did with a barely there, oh so painful throat. It is day 4, and we are face to face with a God who saw so much wickedness on the earth he cried a flood big enough to cover the entire globe. There was one man, not a perfect man, a sinner, but one who found favor, and he was saved in a wooden ark.

Already we’ve gone from the tree in the Garden of Eden to the wooden ark. We are slowly making our way to Jesse’s stump and a seed child laid in a wooden manger, our Savior who lived to die on another tree. This is beautiful; finding our way to Christmas from the very beginning.

I could lean two ways tonight. My flesh tells me to lean toward anger and fear and despair. My God says to lean hard into Him.

I think of the beautiful words penned by Octavius Winslow my friend Violet sent me early in our Danica journey.

Child of My love. Lean hard. Let Me feel the pressure of your care. I know your burden, child. I shaped it—I poised it in My own hand and made no proportion of its weight to your unaided strength. For even as I laid it on, I said I shall be near, and while she leans on Me, this burden shall be Mine, not hers. So shall I keep My child within the encircling arms of My own love. Here lay it down. Do not fear to impose it on a shoulder which upholds the government of worlds. Yet closer come. You are not near enough. I would embrace your burden, so I might feel My child reposing on My breast. You love Me. I know it. Doubt not, then. But, loving me, lean hard.

Oh how I’m leaning.

“When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown! When you walk through the fire of oppression, you will not be burned up; the flames will not consume you.”–Isaiah 45:2 NLT

Is God asking you to “lean hard” into Him during this season? Does the discipline of liturgy help you push through days and nights when you don’t “feel” like looking to Him?

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