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

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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Thorn in the Flesh

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I have been in the Texas hill country at Laity Lodge for The High Calling Retreat since Thursday. There is a marinating of soul needed before I can write more about this sacred experience.

Marilyn McEntyre encouraged us yesterday to cultivate a litany. I struggled and eventually put the pen and paper away and went to bed. This morning I entered the mostly empty and quiet main room in the lodge for worship. A humble and striking presentation of the Lord’s Table was waiting. Morning light slanted across the canyon illuminating simple pottery holding the sacraments.

I opened my Moleskin, and these words poured from my heart to the page.

I stood at a minimal wood pulpit and read:

I forget
Calculating a one to ten scale
Pain
Always five or more
Thorn in the flesh

I wail
Hiding in my locked room
Fear
Never going to escape
Thorn in the flesh

I fake
Entering the day with a smile
Obligation
Pretense of hopeful trust
Thorn in the flesh

I push
Dragging snapping bones forward
Wounded
Betraying my body to serve my man and girls
Thorn in the flesh

I retreat
Leaving behind the lonely place
Anxious
Breathing life in community and affirmation
Thorn in the flesh

I remember
Kneeling before the rugged cross
Redeemed
Believing His body and blood are for me
Thorn in the flesh

I expect
Lifting body, mind and soul
Healed
Knowing I am made eternally well by His
Thorn in the flesh

(I did not punctuate my words in any way while writing and wanted to share it here in the raw form.)

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Goodbye. The Last Post on Team Danica. Period.

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Posted at danicajean.blogspot.com on November 4th, 2014.

I’m home a week and a few days now from my eighteenth surgery.
Healing is slow.
Neck wounds and heart wounds seem inseparable.

My surgery was a success. My shoulder that was drooping several inches is higher. I have feeling back in my left arm and hand. I have not had one piercing headache or loss of vision since. All this points to the wisdom of the levels fused and how their instability was causing my symptoms. At the end of the day the protractor and the scans tell the truth most of the time. The rest is God working through a gifted man’s hands. I also felt very sure I needed to take the place offered on my surgeon’s schedule. I wanted to wait, but my gut told me I shouldn’t delay.

I am grateful in a way words stop being useful. I’ve been scolded for the wrong words, too many words, not enough words, and it tears away little pieces of what I’ve always tried to do here. Only God knows my heart, and I trust Him with it as I pray over posts and write and delete while I hold back not what I’m afraid of saying but rather what you might not be brave enough to read. This makes me an immature writer. I care too much. I hedge for one the truth ninety-nine need to hear. I think I’m growing into a different kind of brave. Only time will tell.

Mixed in all this neurosurgery stuff there was a catalyst pushing me towards something I believe God really wants me to do. Of course it has to do with writing. In the past few months He has been using clear sign posts of providence to push me in uncomfortable places making sure I get the point. The fork in the road doesn’t give me two paths. I don’t mean I hear voices from the sky or see writing on the wall. What I do mean is I have been on my knees drawing circles around a call. I have been committing to Him and begging for Him to direct my paths, and He started to answer by making only one path appear. Just one path. And I began the hard work. Here’s the thing. I truly needed to be more well, to have my arms and hands working, my head clear enough and in just a little less pain so I wouldn’t medicate away any clarity I needed for this daunting job.

Earlier this year I begged God for a spiritual retreat here in Ohio with some like-minded women who are also writers. Most of them are not published authors. They are women who share their faith day to day on personal blogs. Their desire for God to REFINE the very motives of their hearts in every word they share out on this almost infinite web space is what made me believe I was to attend this weekend of worship. Oh, and my Christa Wells was there. (I call her “mine” because her music has soothed my soul through the darkest days of my life.) I had scrimped and saved. I registered. I paid extra to have a room alone fearing mast cell reactions and anticipating needing more breaks. I had even decided I would drive myself. Salt Fork Lodge is not that far, a straight shot, and I wanted this so badly. Instead, I became very sick the week before the retreat. I ended up in Maryland for plasmapheresis and the beginning of IVIG in twelve of the most refining days ever, most of which I spent in solitude. I was very alone. I was tremendously sad, but I was really too sick to doubt there was some kind of cosmic mix up. I was given a chance for a treatment most could only beg for. Another woman who wouldn’t have been able to attend the retreat took my place, and I felt good about this, even grateful.

It was the trip last week that didn’t happen that crushed me. I had this opportunity to travel to Chicago and piece together the Storyline God’s been writing in my life but also to intimately learn from authors I greatly admire about their own journeys to publication. This was huge. I was sure God meant for the asking and receiving. I haven’t wanted anything so badly in a very long time. God said “Yes” to something I had prayed about and desperately wanted for almost a year. I couldn’t pay for this, especially in light of my new surgery, but it was being offered to me. A gift. There’s no way to write a better intro to the back story of how God worked to make my book a reality, right? Storyline was Wednesday through Saturday, exactly a week to the day from when I had my eighteenth surgery scheduled in Maryland, but I was confident I would push through and make it there. God didn’t get this wrong. I was going to do both.

More than this I would have had time to spend with a woman who visited me on the worst day of my above mentioned hospitalization in the spring, A beautiful spirit who came in with her classic khaki trench and blue peep toe TOMS and didn’t even flinch to see the mess I was. She had been reading Team Danica for a while. Her own daughter has had a Chiari decompression. She and her other daughter suffer from EDS as well and all that goes along with our disease. She told me as she dropped on her knees on that filthy hospital room floor I had to write. I wanted to quit it ALL that day, and she came in her own pain and told me straight up God had something I needed to do. This thing we live has a way of making fast friends, tight friends and forever friends. She lives in Chicago and just about as much as I wanted Storyline I wanted time with this friend.

I could have told Dr. Henderson when I saw him on Monday I just needed to wait for this surgery, because I told God “Yes” to this other thing. I didn’t. I was in enough pain and felt urgency in my gut to take this time he’d planned for me on Wednesday. While I was leaving the office that day I ran into a woman I met in the spring as well. It was a “God wink”. If you don’t believe our times are really ordered by minutes and hours ask me about this woman. She remembered me. We spoke briefly waiting for her daughter to be wheeled out in her chair before having another seizure. We spoke quickly of faith and trust in the exact same good God. What this woman does and the life she leads put everything in perspective for me. It also reminded me why this book I’m writing matters.

I still thought the Chicago trip would happen after I came out of the operating room. I’m one of those super positive, very awake and ridiculously unaware of initial pain people following anesthesia. I think it’s because they have to give me so much to get me and keep me under. My EDS makes me metabolize medication so no amount of drugs is really enough. I know this has saved my life a time or two in a different kind of way. The two thumbs up thing is probably annoying to anyone else around me in the recovery room. I learned it from my brave Danica and keep the tradition alive. It only became clear a few days after my surgery how much harder it was on me than I expected. For some reason the anterior cut, the swelling in my neck and in my throat and a strange spiritual and emotional pain pushed me into a final realization. I canceled my flight, my hotel and called my friend. Storyline was a real “No”.

This will be the last post on Team Danica. I’ve tried to do this before and the timing was not right. Because of my own health issues along with a web developer that didn’t see my vision, and a real sentimentality about our little blogger home here I kept updating but most of the writing has been going on in another place. In a few days a new website will be launched. Please forgive me for the first month as I cringe while I try to get the word out in repetition. This is way out of my comfort zone. I hope you will come over, because I know for sure God’s not done with me yet. The new website will be fundamentally different and more fun than just telling stories. I think you’ll love it. Some of Team Danica’s posts will be edited and used in part in publication and the rest saved as a beautiful story of God’s Grace and goodness to my family and I and infinite love from all of you. You have humbled me and blessed me by walking along side us here. Thank you.

I will end with a long passage I began with on this blogging journey over four years ago. It is from Shauna Niequist and her Cold Tangerines. I would have been her guest at Storyline last week. Her words are woven in the fabric of our story. Please read them and read them again. Team Danica is like the story of God and your story is too. There’s something past the pain and suffering, and it’s blessing. It’s all blessing. It’s always Grace.

When you realize that the story of your life could be told a thousand different ways, that you could tell it over and over as a tragedy, but you choose to call it epic, that’s when you start to learn what celebration is. When you see in front of you is so far outside of what you dreamed, but you have the belief, the boldness, the courage to call it beautiful instead of calling it wrong, that’s celebration. When you can invest yourself deeply and unremittingly in the life that surrounds you instead of declaring yourself out of the game once and for all, because what’s happened to you is too bad, too deep, too ugly for anyone to expect you to move on from, that’s that good, rich place. That’s the place where the things that looked for all intents and purposes like curses start to stand up and shimmer and dance, and you realize with a gasp that they may have been blessings all along. Or maybe not. Maybe they were curses, in fact, but the force of your belief and your hope and your desperate love for life as it is actually unfolding, has brought a blessing from a curse, like water from a stone, like life from a tomb,like the actual story of God over and over. I would never try to tell you that every bad thing is a really good thing, just waiting to be gazed at with pretty new eyes, just waiting to be shined up and- ta-da!……..there is something just past the heartbreak, just past the curse, just past the despair, and that thing is beautiful. You don’t want it to be beautiful, at first. You want to stay in the pain and blackness because it feels familiar, and because you’re not done feeling victimized and smashed up. But one day you’ll wake up surprised and humbled staring at something you thought for sure was a curse and has revealed itself to be a blessing-a beautiful, delicate blessing.

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Please note: http://www.teamdanica.com is already a dead site. You will no longer be able to access any old posts there. http://www.danicajean.blogspot.com will remain live for a little while longer.

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