Tag Archives: Spine Surgery

Plodding in the Desert

Hope Coloring Page

I’ve been spending time in the desert lately. Things have felt dry and parched and starving for refreshment. I’ve traveled this terrain enough times to know that there is purpose in it, but it doesn’t make the journey any easier.

Since the beginning of this year, I’ve felt a shift. That’s the only way I can describe it. Something is different with my health, but I can’t put it into words. My body feels tired all the time and it’s really hard to process that. I’ve shared these feelings with a few close friends and Chris (of course) but it’s made it difficult to write. I’ve needed a lot of me and Jesus time, with no other voices involved.

I’d like to tell you that I’ve sorted things out, but I haven’t. God’s given me a few incredible gifts along the way…things I think he knew I’d need to keep on pressing on.

One thing I do know is that along with this “shift” has come an even greater urgency for me to share with you how real God can be in your life and how very much he is needed.

It’s been a tough year so far with my health. I shared in my last post about complications with an infection in my foot. Shortly after that, I took a hard fall to polished concrete at my favorite restaurant on a date night with Chris. Ironically, Chris was about the only person in the restaurant to NOT see me fall. After a few weeks of feeling as if I’d been hit by a bus, I went in for X-rays to check out (what I thought) were cracked or bruised ribs. It turned out that I had a compression fracture in my vertebrae just below my fusion in my thoracic spine. The assumption is that is happened because of the fall, but much like a cracked rib, the only pathway to healing was time and rest. Months of time and rest.

Which brought us to the end of March in which Chris and I took a belated Anniversary trip to Puerto Rico. The warmer weather and steady climate did wonders for my pain, but the endless hours to lay around on the beach and “think” were a surprise I hadn’t bargained for. Finally on the last night of our trip, over an amazing dinner, I apologized to Chris for being so quiet the whole week (my timing is impeccable, I know). I told him the more I tried to figure out why I was so introspective, the more introspective it had made me. (Introspective is a fancy word for quiet and boring).

And then it hit me; this was the first time Chris and I had done a beach vacation…just the two of us, no family or friends…in five years. And in five years, my body has changed a lot. I had a major spine surgery that changed my entire neurological makeup along with shortening me an inch (still peeved about that one…) and an ileostomy bag placed. So to go on a vacation where you’re pretty much living in a bathing suit 24/7, was hard on me. I felt self-conscious and embarrassed (for Chris) the whole time. I was frustrated that I had to use my wheelchair so much, because getting around at the pool without my leg braces is hard and dangerous. The stares bothered me more on this trip than they ever had before. And it bothered me that it bothered me.

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And it hit me afresh like a tidal wave that my health is not getting any better, but in fact is getting worse.

I keep having this re-occurring nightmare where I show up at the office of my Neurologist. In my dream he’s a faceless individual…older, kind…but I never am actually called into be seen by him. The dream progresses (they improved the elevator in one of them…) and I see him in the waiting room, or at a coffee shop in the hospital lobby, but I never hear his diagnosis of me and I never actually get real clinic time with him.

It’s troublesome to me and I think it probably has to do with a pending appointment I have with a new local neurologist here in Milwaukee in June. I’ve had the appointment scheduled for several months now, after my primary doctor urged me to find someone to look into a tremor that I’ve developed. They think it’s further autonomic dysfunction due to my deteriorating nervous system, but it would be good to rule out any other neurological causes (MS, fibromyalgia, parkinsons, etc.).

And I think that’s when I start to come full circle about this “shift” I’m feeling. I think part of this shift is that I no longer have a great desire to figure all this out. I’ve gotten to a point where a diagnosis is just a name. I know there is no solution, no cure, and so it all seems so futile to me. But I have this internal wrestling going on inside because I would never want Chris or Promise or anyone that I love to think that I didn’t try my hardest to live the longest, healthiest life I could.

And so that is a small window into what my desert has looked like lately. Ironically, all of this comes after giving a talk titled “The Battle for Hope- How to Keep Getting Up When You Get Kicked Down” at our Church, Elmbrook, in early March. How I’ve listened to my own advice over and over and over. I’ve repeatedly told myself that it’s not about feeling God, but knowing the truth of God. It’s about making a choice to keep plodding along, even on the hardest, driest days….that somehow God will not let that go in vain.

I was laying in bed last Sunday night, Chris silently sleeping beside me. My health and the future of my health felt like a weight on my chest and I was silently trying to muffle my sobs. I felt a nudge from the Holy Spirit to get out of bed and get on my knees by my bedside. Again, I knew it was God’s spirit because it’s not a thought that would naturally come from my human-ness. I mean getting on my knees is hard for me. It hurts. My left foot is at a permanent 90 degree angle, so it’s uncomfortable. Really awkward.

After a few moments of wrestling in my head with whether or not I was actually going to do this, I slipped out of bed and onto the floor. And I wept. And I surrendered my health to God, afresh…asking him to take it all. As I crawled into bed I had the most incredible peace where the heaviness had been. I wanted to read my bible but it was down in my car, so I opened up the bible app on my phone. Apparently the last time I had been reading it had something to do with looking up the verse we named Promise after; Psalm 145:13 NIV.

As my eyes read through verse 13 and into verse 14, my breathe caught in my throat. I had never paid attention to the verse following “her” verse but it read:

“The LORD upholds all who fall and lifts up all who are bowed down.”

I know that no matter what lies in front of me, or for however long this desert period lasts, God will lift me up if I continue to bow my life to him.

-Adri

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Chronic Hope

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(Printed in the Winter 2015 Issue of Just Between Us Magazine)

When you live with or love someone with a chronic illness, you soon learn that it requires you to make a plethora of unending decisions. When you reach the “D” section in your phonebook, the list of doctors seems endless. Some of these doctors are even programmed into your speed dial. Maintaining a “baseline” is important so there are tests and procedures that have to be repeated year after year after year. You experience physical pain week after week after week. There are questions and emotions that you have to battle day after day after day and sometimes moment after moment after moment.

 

Living with a chronic illness is exhausting. By definition it is constant, ceaseless, persistent, and unending.

 

One of the most challenging things for me about living with Spina Bifida is how many areas of my body it has affected. It affects my bladder, kidneys, bowels, legs, feet, nerves, and muscles. Recently it has begun to affect my neck and brain. I routinely see a neurologist, neurosurgeon, podiatrist, urologist, gastroenterologist, and physical therapist. On occasion I’ll see a shunt specialist, hematologist, and orthopedic surgeon. If I’m bored I’ll see my primary doctor.

 

Let me assure you that I know how exhausting it is. Especially when I stop to consider the fact that despite all of these appointments, there is no cure for my condition. Unless God decides in his infinite wisdom to heal my physical body, I will never “get better”. At most, I can attempt to maintain my current health for as long as possible.

 

This would be so depressing if it stopped right here.

 

But it doesn’t. God has provided a way for us, in chronic illness, to have chronic hope.

 

You see, God will use pain to develop you, but he never meant for it to define you. I have found that the days that I feel the most hopeless about my health are the days that I let my suffering become my sole focus. My whole purpose in living becomes wrapped up in trying to cure it, trying to maintain it, or trying to dull it.

 

On these days I have to take a step back and remind myself that God has created me to be so much more than that. I have to re-read passages in my Bible that fill me up with the hope that God is using all of this for something much bigger than I can understand. One of the things that I love about Jesus’ life is how he specifically chose people suffering with physical disabilities in order to display to the onlookers that he was the Messiah they had been waiting for. These broken lives mattered greatly to him and they became his tools in which his glory and power shone brightly. If you’re hurting today, my prayer is that that brings you so much hope and encouragement!

 

Not only does God promise to use your pain on a large scale, but he desires to use it in a very personal way too. He wants it to become the tool with which he molds you into a person that reflects everything about his character.

 

What would that look like? It would look like a person that is thankful for their doctors, patient with their caretakers, loving toward their family, and even joyful during their colonoscopy. It would look like a person who shows gratitude about the function they do have rather than grumbling about their limitations. It would be a person who cries tears of deep pain, all the while knowing peace is not based on the feelings contrived by their reality, but rather on the truth that God has laid out in the Bible.

 

It’s a person that I have begun to ask God to make me into. It’s a person who’s living with chronic hope.

 

2 Corinthians 4:16-17 says, “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.”

-Adri

To order Just Between Us Magazine, visit www.justbetweenus.org

 

 

 


Resolutions- “Whatever’s in front of me, I’ll choose to sing Hallelujah”

iPhone 762My “stats” page just informed me that it’s been three months since I posted a new blog entry here.

It doesn’t surprise me. I’ve been talking…crying is more like it… with God about a few things and have purposefully avoided writing. Not because I am scared to let you see into my brokenness, but because ultimately, what God has to say about it is what matters.

Sometimes I need to just stop and be quiet and listen to that voice inside of me that I know is God-breathed, because nothing in and of my human-ness would have formulated that thought in my head.

Promise came home from school, after returning from Christmas break, and announced (while standing on her chair, as she does with most of her “announcements”) that while discussing what “resolution” meant at school, she told her whole class what my New Years Resolution was.

My heart started racing. I broke out in a cold sweat as I frantically replayed in my mind, every resolution that I had mindlessly rattled off (serious or otherwise) over the past week. I’m not big on New Years Resolutions, but I am big on jokingly making them up.

Oops.

(Lesson learned. Promise is more social in class than I thought she was. I have no idea where she gets that.)

After coming up empty on what Promise could have possibly shared with her entire class, my anxiety was calmed as she said, “Oh you know Mommy, the one about getting an alarm clock and not keeping your phone on your nightstand.” *Cue a collective sigh of relief*

As is evidenced by the time stamp on this post, I am failing horribly at this “no electronics in the bedroom” resolution.

In the days and weeks that have followed that announcement, God and I have been having some more serious hear-to-heart talks about resolutions.

I’m not sure if it’s the fact that in 2 minutes I am turning 31, or if subconsciously my body just knows that it’s getting tired, but the weight of my health has been unusually heavy at the start of this new year.

I’ve struggled more than I ever have before with seeing friends and acquaintances experience physical healing in their lives, while my situation remains unchanged…if not worse. I’ve silently cried out the, “but why not me, God?” question repeatedly in my head.

If anything, I feel like my faith in God’s power to heal me is more confident now than it has ever been.

And the only answer that I’ve gotten is that that is not God’s plan for my life right now. Is he capable? Yes. The same power that raised Jesus from the dead, now lives in me. Of course he is capable. I believe that with my whole heart.

As my friend, Jill, so wisely shared with me a few months back; God has healed me. I can’t think of myself as being excluded from his healing. He’s healed me to the point that he knows I needed to be healed in order to accomplish his purpose for my life.

I am alive. I am walking. I still have my legs, as cumbersome as they may be. That is all a certain extent of healing that God has allowed to take place in my life.

It’s just not healing on my terms. Which is where faith and resolve come in.

The lyrics of this song by Bethany Dillon hit me hard the other day as the spilled out from my Pandora station while driving;

“Who can hold the stars
And my weary heart?
Who can see everything?

I’ve fallen so hard
Sometimes I feel so far
But not beyond your reach

I could climb a mountain
Swim the ocean
Or do anything
But it’s when you hold me
That I start unfolding
And all I can say is

Hallelujah, hallelujah
Whatever’s in front of me
Help me to sing hallelujah
Hallelujah, hallelujah
Whatever’s in front of me
I’ll choose to sing hallelujah

The same sun that
Rises over castles
And welcomes the day

Spills over buildings
Into the streets
Where orphans play

And only you can see the good
In broken things
You took my heart of stone
And you made it home
And set this prisoner free

Hallelujah, hallelujah
Whatever’s in front of me
Help me to sing hallelujah
Hallelujah, hallelujah
Whatever’s in front of me
I’ll choose to sing hallelujah

Songwriters: Leonard Winston Dillon
© Kobalt Music Publishing Ltd.
And so as I step into another year of living with all of this, my resolve is that “whatever’s in front of me,  I’ll choose to sing hallelujah”.
-Adri

 

 


Anything really means ANYTHING

My conversations with God have sounded a lot like this over these past few days;

Me: “So God, when you say “Do not be anxious about anything… you don’t really mean anything right? There are some really BIG things that it’s OK for me to be anxious about, right?”

Holy Spirit: “Nope. I really mean anything and everything.”

Me: “But God, you know the phone call I just got from my doctor the other day. I have trusted you with so many things in the past…I think I’ve earned being able to worry about this one.”

Holy Spirit: “No…really. I know you won’t be living my best for you if you worry about this. You’ll miss what I want to teach you in the waiting. I promise to give you what you need to get through today and that’s it. We’ll worry about the strength you need for tomorrow when you wake up tomorrow…”

Me: “Ok, well I’ll try not to worry but I probably still will. And besides, if I don’t worry, how am I supposed to pass the time between now and my appointment on July 22nd? I feel frozen, like this can’t be reality. My head feels like it’s outside of my body right now. How do I function feeling like this? All I want to do is sleep so I don’t have to think about it. And if there’s any way you could shut down Google between now and then, that would be awesome too.”

Holy Spirit: “Keep talking to me about this. Get into your bible and really see what I have to say about this. Ask other people to pray that I give you the strength and peace you need. Then when you are sleeping, people will still be praying. I’m not going to withhold peace from you. It is possible to have peace and still function during this waiting period. We’ve been here before… many times. Look how close we’ve grown because of it. Trust me. And DON’T Google it. Just DON’T”

This conversation started after a phone call that I received this past Wednesday from my primary doctor. I had gone in the day before to discuss night sweats that I’ve been having. They started after my spine fusion three years ago. They were sporadic and occasional at first but have increased in frequency and severity as of late. If I go 2 or 3 nights without having one, that’s a good month. And it’s not like I’m just getting hot at night. I wake up and my pajamas are wet, the sheets are soaked, and I can feel sweat trickling down my skin. So I finally decided it was probably good to have it checked out. Chris decided it was probably time, too… poor guy.

After my exam, my doctor and I agreed that there didn’t appear to be anything to be concerned about, but he’d run a complete blood panel, just to be thorough. During the visit we were able to rule out the possibility of the night sweats being caused by early menopause or my antidepressants. I left his office with us agreeing that it, most likely, was just my autonomic nervous system being its crazy whacked out self. During my last surgery, they hacked through some pretty major nerves and disrupted my nervous system quite a bit, so this explanation would be totally legit.

So I was a little taken aback when I received a voicemail from my doctor the next day,  asking me to call him back. “Nothing urgent” he assured me, but he needed to discuss the results of my blood panel with me.

When I called him back, he said that one of my white blood cell counts was moderately elevated. He asked if I had asthma or was experiencing any seasonal allergies? Nope. Could I have a parasite? Was I having Diarrhea? Well I have an ileostomy so that one’s a little tough to tell 😉 But no, I hadn’t noticed any changes in my stomach or bowel function. After we had covered all of those fun topics he said, “Well normally I might just ignore the elevated levels, but since you are having the night sweats that are getting worse and the fact that it started after your spine fusion, I think we should be thorough and have you see a hematologist in our oncology department. Sometimes this elevated type of white blood cell can indicate a underlying bone marrow infection or cancer.”

He gave me the name and number of the hematologist and as I hung up the phone and went back to blow drying my hair, the weight of everything that he had just said came down hard on me. Oncology. Hematologist. Bone Marrow. Fusion. Infection. Cancer. I picked up my phone and texted Chris. He called me right away and together we let all of those words sink in.

I knew his mind would be flooded with the same thoughts mine would because he was sitting right next to me four years ago when my neurosurgeon was listing the risks of cutting my spine in half and fusing it back together. He had explained that rather than grafting bone marrow from my hip for the “glue” for the fusion, he would take bone marrow from bone he was removing from my spine and ribs and mix it with a synthetic bone paste that in a very small percentage of people, was thought to increase the risk of cancer. But on the flip side, mixing this paste with my own marrow would provide a much stronger fusion and with my bones being as small as they are… we needed that.

Chris and I knew the risks. With surgeries that major there are always risks. But now all of those words came flooding back into our minds with a new urgency. In addition to this, I had mentioned to Chris about 4 or 5 months ago that there was an area of bone on my thoracic spine that was really tender and painful. It’s still there, but I had been ignoring it because … well… I mean they CUT ME IN HALF. I didn’t want to be overdramatic about a sore spot. I had even had my PT work on that area a few times, just to make sure it wasn’t a knotted muscle. Now my stomach felt knotted as I recalled the fact that bone tenderness could be a symptom of Leukemia.

After Chris and I were done talking I called my Neurosurgeon in Chicago just to loop them in. They said to go ahead and be seen in oncology and keep them updated because these symptoms are definitely abnormal. If they do discover some sort of bone marrow infection, it could infect the hardware in my spine which would be devastating.

Then I called the oncology department and set up my appointment. It’s July 22nd at 3:15 pm and I covet your prayers for both the appointment and for the waiting time until then. We are not new at the waiting game. I learned so much in our journey with diagnosing my Chiari, but it’s still not easy to think about having to go through another health situation that requires so much patience. Again, because of the complexity of my case, everything is difficult to diagnose. For each new symptom, there could be at least two possible causes. This can lead to major mind games going on in my head. There are moments where I feel almost certain that when we walk into my appointment on the 22nd that he will say, “There is absolutely nothing to be concerned about”. Then moments later, I feel pretty confident that he will want to look into this more; do a more extensive blood test, bone marrow biopsy, or CT scan of the tender area.

But the one thing that Chris and I DO know for certain is that God is still completely in control. This is not shaking him one bit. He will continue to use this for his glory and kingdom work. We are thankful that I have doctors that want to be thorough. And as my friend Erin said, God has only asked me to walk the road of waiting right now. Nothing more.

So in an earnest effort to do that and only that, I write about this not to compound the worry and “stir the pot”, but to ask you to pray. Specifically pray for mental strength to continually bring my anxiety and worry to God with Thanksgiving for all he has already done in my life and all that he will continue to do. Please pray that answers will be clear and that God will provide the physical strength to tackle whatever is next… whether it’s cancer or just having to live with a overactive autonomic nervous system.

“Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done” -Philippians 4:6 out of The New Living Translation Bible

Much love,

Adri


:: Remembering the surgery that taught me so much ::

“The worst part of holding the memories is not the pain. It’s the loneliness of it. Memories need to be shared.” -Lois Lowry, The Giver

Chris, Promise, and I just returned from a ten day vacation in southern CA. The re-connections and memories that were made while we were there were needed. It was a sweet ten days; a mixture of laughing, morning dance parties in our hotel room, local attractions, sailing, time with extended family, warmth, and new friendships. The sun did far more than heal my Wisconsin-induced Vitamin D deficiency.

During our time with Chris’ Uncle Brian and Aunt Janelle, I had the privilege of meeting Janelle’s “fab five”. A group of ladies joined by their love for Jesus and the way he’s working out his kingdom in their lives “beyond, beyond, and beyond” what they can imagine (as they like to tell me). Their names were familiar to me. Some I had met, some I had painted for, some I had rcvd emails from with encouragement that they were praying for me. I was thrilled to meet them all face-to-face, sit outside with my iced latte, and share more about how God is bringing hope into my suffering.

They were patient and gracious as I stumbled over memories from all that my body and heart have been through. They were engaged and shared pieces of their own suffering and redemption. Janelle took on the arduous task of entertaining Promise, so that I could talk uninterrupted, but would periodically interject her own memories, specifically from my last spine surgery.

Her memories were like little gifts that she was unwrapping and handing to me. Things that I could not have remembered because of narcotics and pain.

There’s something so healing about sharing memories with others. These memories may seem repetitive to the listeners who don’t understand their significance, but memories are important.

By the time I post this, it won’t be March 22nd anymore, but March 22nd is a day that floods me with memories. In addition to being the birthday of two of my closest friends, it marks 3 years since I had my 7th spine surgery… the surgery that was physically and emotionally brutal for me.

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When I share my story with women, I like to say that it’s the day that they cut me in half. Dramatic? Maybe. But not far from the truth. They shortened me by an inch, removed my ribs, cut some of my most major nerves, put PIC lines in me, drains in me, screws in me, rods in me, and then three days later, asked me to try to stand up.

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It was pain more severe than I’ve ever thought possible. Pain that drove me to my knees in tears of thanksgiving a month later as we remembered Jesus’ brutal beating and crucifixion on Good Friday and then resurrection 3 days later on Easter Sunday. How did he bare all of that pain? His spine was ripped into with shards of metal, glass, and bone. His human body was ravaged with pain and he did it all (without narcotics) for me.

It was the surgery that first broke my “mama’s heart” when Promise was too scared to even come near me. She was three. I was broken… mended back together by a back brace and supported by a wheelchair.

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It was the surgery where the anesthesiologist gave me a “free eyebrow wax” while removing the tape that held my eyes shut during the 9 hour procedure.

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It’s the surgery that showed me how much Chris loves me. It’s the surgery that taught me that I can’t shelter Promise from experiencing pain (and that that’s good!). It’s the day I lost the majority of feeling in my back (it now feels like a slab of rubber) but gained new motion in my left foot. It was the day that my Neurosurgeon breathed a sigh of relief that my spine had fused well, despite this only being the 8th surgery of this type done in the country. It’s the surgery that forced Chris and I to make a decision and believe with our whole hearts that God loves me more than I know and would allow the results that He knew were best. It’s the surgery that still, to this day, causes me much pain, but I am walking (and have found Andy Kerk at Body Mechanics to help with that:))

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It’s the surgery that propelled me into facing my depression and seeking help. It taught me that God is fully capable of physical healing, but sometimes chooses not to (and that’s OK). It’s the surgery that confirmed that (at least for now) Promise would be our only child.

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It’s the surgery that 3 years to this day, I don’t regret (yet have questioned) and am wildly thankful for (as backwards as that may seem).

Thank you for letting me share my memories with you.

-Adri


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