The Frustration of Forced Rest

The value of Grey

My eyes followed the delicate floral pattern of greens, browns, yellows, and periwinkle that scattered haphazardly across my pillowcase. Except I knew that this floral print that I was laying on was not formed on accident, but had an intentional pattern…a repeat…that I had identified. I had been studying it minute upon minute, hour upon hour, day upon day, and week upon week. I knew it better than anyone.

I could also tell you the placement of each knot in our family room wall’s wood paneling, the number of vertical gray slats that hung lifelessly across the door wall that led to an outside that I wasn’t allowed into, and every color of carpet fiber that was woven into the Berber carpet where my mattress lay.

I was ten or eleven years old and enduring, what seemed to me, like an eternity of solitude. My pediatric neurosurgeon had ordered me to be on strict, flat bed rest for one whole month. This sentencing was preceded by spine operations to (once again) untether my spine. I was dealing with complications of cerebral spinal fluid leaking out from my Dura, which led to severe, head-throbbing, nausea-inducing, headaches and would eventually require another spine surgery to remedy. Grasping at wisps of hope, my neurosurgeon had placed me flat on my back with a tight dressing of gauze and hospital tape that covered the squishy fluid pocket sitting beneath my skin on my spine. The goal was to relieve the pressure of the fluid pocket long enough for the CSF leak to heal on it’s own, sans surgery.

My parents had moved my twin mattress down to our family room and it was there that I was “stuck”. I grew restless of TV and found myself sketching bridal dresses out of old copies of BRIDE magazine. I read “The Diary of Anne Frank” and cried for hours at the injustice of her story. I tried to journal my own thoughts in a small fluorescent colored Lisa Frank diary, but my words fell flat in comparison to the sharpness of my inner turmoil. Every time I needed to go to the bathroom, my mom would bring a bed pan and help me catheterize myself. My friends would stop by after the 3pm bell and excitedly chat about all of the things I was missing at school. They’d leave and I’d miss the warmth of their companionship as the cold, isolated, overwhelming pile of “make-up” homework grew taller.

And so I’d lay there. I’d memorize the pattern of my bed sheets, the knots in the wood paneling, the slats in the blinds; and warm tears would roll down my cheeks because I was in a forced period of rest and isolation that I never wanted to be in in the first place.

Twenty one years later, I can look back on this time of solitude…of stillness…and be thankful for it and many others like it because those are the times where I met God. Those were the moments where I felt the most dead inside, but God was cultivating the most growth. He saw past a small broken little girl and saw the potential for a women who could fiercely love and trust him even when she knew the pain would never stop. He knew that these inconvenient moments of isolation were necessary to transform me into who he wanted me to become.

Maybe you find yourself in one of these periods of “forced rest” right now? I understand friend….they can be so frustrating. We live in a culture where resting is viewed as laziness, where solitude is viewed as simplemindedness, and where unproductivity is viewed as worthlessness.

I am here to buck every one of these notions because they are unbiblical and I have repeatedly experienced their untruth. It is in these moments that we have the potential to discover how personal God is, how much he longs for peace and joy to be the markers of our lives, and his yearning to give us eternal vision…not temporary sight.

If this is you today, will you do something for me? Will you ask God to show you something about himself or about his character? Will you thank God for the exact position you are in, even though every fiber of your being wants to curse him for it?

I promise you that he will not fall flat. He will not leave you empty. He will not disappoint you. It may take you twenty one years to see it….but you will see it.

Jeremiah 29:13 ” You will seek me and find me when you seek me with all your heart.”

Psalm 46:10 “Be still, and know that I am God.”

Mark 6:32 “So they went away by themselves in a boat to a solitary place.”

God began impressing upon my heart to share this with you when I read Psalm 4:4 in one of my times in the Bible. It’s not a well-known passage, but it struck something inside me. It reminded me of this lesson that I have learned. It says, “In your anger do not sin; when you are on your beds, search your hearts and be silent. Offer right sacrifices and trust in the Lord.” David says this because he has been spending a lot of time in forced solitude and isolation. He has been hiding out in caves and he knows the truth that if you are silent and honest in your hearts when you are alone, it is impossible not to find and know who God is. David has experienced that when he’s angry because of his circumstances, in silence before God, anger can be transformed into trust.

John Ortberg said, “Waiting is the hardest work of Hope.”.

Psalm 37:7 “Be still before the LORD and wait patiently for him; do not fret when men succeed in their ways, when they carry out their wicked schemes.”

Rest well friends.

-Adri


Top Ten Ways a Disability Prepares You for Motherhood

Milwaukee_Logo_Stacked_Black

Recently, I was asked to write monthly for a blog called MKE (Milwaukee) Moms Blog. The site is a local resource for moms in the Milwaukee area; a place to find support, advice, and connect with other women both through screens and in real life. You can learn more about the site by clicking here. It is a sister site of a nationwide site called City Moms Blog Networks. If you don’t live in mke, you should check it out and see if they have a site in your city!

Writing for MKE Moms Blog has proven to be a fun adventure thus far and provides outlets for me to write about topics other than my pain (because believe it or not…my life does not revolve completely around my disease) and to use humor in my writing. Humor has been key in getting me through so much of the pain and so it’s fun to be able to share a slice of that.

My first post, “Top Ten Ways a Disability Prepares You for Motherhood was featured on the site yesterday. As medical technologies progress at the rapid rate that they are, we will continue to see an increase in women with a wide array of abilities (or disabilities) enter the mommy community. Hopefully this post will shatter some of the pre-conceived notions you might have about parenting with a disability. While there is no doubt that it comes with challenges, I’ve found that so much of what I’ve experienced has prepared me for motherhood better than any parenting book ever could have.

You can also read my bio and get to know the other (amazing) contributors by clicking here.

Happy Parenting!

-Adri


“Just Between Us”

We are currently in the midst of a semi-major construction project; finishing our unfinished basement. In addition to doing this, we will be re-configuring several rooms in our house to better fit our needs and lifestyle. While all of this may sound fancy and exciting, it really just translates to one thing; our house is a freaking disaster.

As I was attempting some semblance of order, I found myself rummaging through our bookshelf in the office, tossing into a box those books that no longer needed a home on our shelves. During this process, my fingers stumbled onto the bindings of some familiar high school and college journals.

I flipped to the first entry in a worn black journal that I knew dated back to pre-college days. The first entry said this;

“An autobiography…what a looming task! All I know is that it is something I must write. This may never be published or even read by more than a few people, but it’s the only bandage big enough to cover all my pain.”

The words came back to me quickly. I remembered laying in my old bedroom, periwinkle colored walls surrounding me, while I scrawled them with a pencil just days before I was supposed to have what would have been my sixth major spine surgery. That surgery ended up being canceled the night before it was to occur and I desperately needed an outlet for my feelings and emotions.

Unfortunately, one of those outlets at that time was the sharp end of a metal bobby pin against my wrist.  The other outlet was this blank lined piece of journal paper.

As I continued scouring my journals, I came upon entry after entry identifiable only by my handwriting. They were full of a hurt and anger that I no longer feel inside. I had written them in some of the deepest corners of my depression while in college.

I tell you all of this because I want it to be a testament to the enormity of God’s work in my life. Of his ever-sustaining love and compassion toward me, even in those very dark places.

Without his grace and redemption, it would be absolutely inconceivable for me to share this next part with you.

This past spring, I was invited to write a quarterly column for “Just Between Us” magazine. Started by Jill Briscoe at the age of 55, JBU celebrated their 25th anniversary of “encouraging & equipping women for a life of faith” this year. In the process of re-formatting the layout of the magazine, they asked if I’d consider writing a column dealing with physical suffering and God’s plan for it in our lives.

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After discussing it with Chris and praying through what a commitment like this would look like (and thinking of about 100 people more qualified than me to write this), I agreed to the terms and submitted my first column. It was just printed and distributed in the Fall 2015 issue.

jbu article

Head Shot Photo Credit: Robyn Vining Photography LLC

I had been a subscriber to JBU prior to being a contributing writer, but it was fascinating to learn more about the magazine. JBU is distributed to over 65 countries throughout the world and translated into many of these countries native languages. It started as a ministry tool to encourage pastor’s wives and continued to broaden to the scope of women it currently covers. What is even more amazing about JBU is that, in a publishing industry that can be cut-throat, the magazine has not only survived but continues to flourish with a staff of six women and a host of donors and contributors.

I could go on and on and ON about this magazine and how God is using it, but instead I invite you to explore it for yourself at http://www.justbetweenus.org .

jill and me

As I let my mind reflect on the memory of the words that my hand etched 15 years ago, I am filled with thankfulness for the opportunity that God has provided through my column, “Chronic Hope”. It’s been an answer to prayer that I could never have conjured up. An answer to that prayer that I cried desperately in my heart when I was 9 years old: “God, you have to use this pain for something good, or else I don’t want to live anymore”.

It’s humbling and overwhelming to know that he is and always has been using my pain.

I know I won’t understand the half of how he’s used it until I’m in heaven, free from the chronic hurt, but for now I take great comfort in the chronic hope it brings to my life.

“The Lord gave the word and great was the company of those that published it.” – Psalms 68:11

(JBU’s founding verse)

-Adri

*Due to this opportunity, I have changed my blog URL to http://www.chronichopeblog.wordpress.com*


The Other Side of the Operating Table

It’s hard to settle into sleep tonight. It always is on nights like tonight. I’m not a stranger to these feelings.

It’s the evening before surgery. My mind is swirling with images and emotions that I subconsciously bury deep inside until I’m facing surgery head-on again. Only then do they reappear in detail, almost as if they occurred yesterday.

But tonight is different. This time, I’m not the one physically having the surgery.

Tomorrow at 11 am eastern, I will be on the opposite side of the operating table and it’s a place that I’m finding is uncomfortable to be. Especially because the person having surgery has been on the opposite side of my operating table since I was three months old.

surgery 11surgery 12  surgery 9 surgery 8 surgery 7 surgery 6 surgery 3 surgery 2

Tomorrow, I will watch my mom put her clothes and belongings in a plastic personal belongings bag in exchange for a ill-fitting hospital gown and light blue grippy socks.

I will watch as she climbs under the paper thin sheet of the cot and lays her head against the stiff pillow.

I will watch as the nurse comes in and asks if she’s cold and if she’d like warm blankets put over her. I’m guessing she’ll say yes. She doesn’t like being cold.

I will watch as they slide an IV needle into her vein and start the slow drip of antibiotics and pain medications that will flow into her blood stream.

I will watch as the surgeon and anesthesiologist come in the room and explain the operation. Then I know my dad will ask if we can all pray together, because that’s what he’s always done and we’re a family that believes in the power of prayer.

Then I’ll reach over and squeeze her hand. A hand that has held mine so many times.

I will watch as she gives me a smile and I’ll give her one back and whisper, “I love you very much and I’m proud of you”.

I will probably feel a warm tear roll down my cheek as they wheel her into the operating room and I know for certain that I will be wishing that I could take her place.

But then I don’t know what I will do because it’s a place I’ve never been in before.

But I do know that when she wakes up, I will be there to wipe the hairs off her forehead and tell her that she did a great job.

I will feed her ice chips because her throat will feel like sand paper.

I will get the nurse when the pain seems unbearable.

We will probably name her IV machine. Because that’s what we’ve always done.

I will be there to steady her when she’s forced to get up and walk for the first time.

I will catch her vomit if I need to. I know how nauseating anesthesia can make you.

Once she’s feeling a little better, I’ll bring her a peppermint patty from the gift shop, because that’s what she always brought me.

I will watch her sleep and while she does, I will read my Bible and pray. Because that’s what I’ve always seen her do.

surgery 4

Friends, please cover my mom in prayer tomorrow at 11 am eastern time. She is having a complicated cranial surgery performed to correct a rare condition in her inner ear. The surgery will take approximately 3-4 hours and the risks are many. She will be in ICU for 1-3 days and the hospital 4-8, depending on the severity of her condition once they are “in there”. Pray for full restoration of her hearing and a “better-than-expected” recovery. Pray for stamina for my dad. Pray for the surgeon and nurses. And I know my mom would want me to ask you to pray that whatever happens tomorrow would bring God glory.

Because that’s what she always prayed for me.

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(This verse has been a rock for my mom throughout these past 6 months)

-Adri


False Guilt and Grace

Mom Guilt. Self-guilt. FALSE guilt.

I can’t fall asleep tonight until I get all of this out on “paper” because…call it whatever you will… this guilt has wreaked havoc on my day and my soul and I can’t help but think that there is another person out there tonight who needs to hear some of what God’s been telling me about this.

I also want to shatter any false notion that social media might have portrayed about me having this whole “living a life with chronic pain” thing figured out. I do not… I repeat, I DO NOT… have it figured out.

But I do have a God who is abundantly giving in both the areas of forgiveness and grace.

Let me give you a little backstory on how I spiraled into today. This past weekend we vacationed up in northern MI with my side of the family. We’re scattered throughout different states and we keep multiplying our offspring, so we rented a home on the water in order that we all could be together. During the course of trying to make good use of that waterfront access, I climbed (or rather crawled) over some pretty rocky terrain in order to then plop myself on a jet-ski, cozied up behind my husband, to take a little spin around the bay. (It’s important to note that part of my reasoning behind doing all this was out of GUILT that I had slept until noon that day because my body was tired and so I felt I needed to make up for that). We had a really fun time out on the water and I have no regrets about going.

But the next day, as my feet hit the floor, I felt a sharp pain in my ankle/heel. Shaking it off as “just nerve pain”, I strapped on my leg braces and limped about in the cute downtown area, filled with quaint little tourist shops.

The pain in my foot has persisted and it’s leading me to believe I strained a muscle in my foot while trying to get down the rocks and onto the jet ski. It’s frustrating because I was just attempting to do something “so normal” and I am paying for it in such a huge way.

It’s been painful to walk for two days now and the pain is starting to wear at me. I’ve spent the majority of today laying on the couch or in bed resting and sleeping, trying to give the muscle a chance to recover.

But it’s summer time and I have a six year old daughter at home that can’t fully comprehend why I need to take breaks. It’s frustrating to her that I’m always “resting”, which in turn exasperates my frustration with the situation even more. Even though it’s literally a perfect day out (the kind of day we wait 9 months to get here in WI), I find myself on the couch watching “Beethoven’s Christmas” out of desperation to “DO” something together with her. Once that’s over, we move on to crafts that I can do while laying down, but that only lasts so long. She’s restless. I’m restless. My foot is throbbing. My head is filled with so much pressure. Every complaint from her about “not knowing what to do” is like a hammer to my skull and I GET CRANKY. I get impatient. I get snappy.

And before I know it, my good friend GUILT is snuggled up all cozy next to me on the couch. “Why can’t you be like the moms you see on your instagram feed?” … “They’re taking their kids to the state fair on a beautiful day like this”…”You realize this is going to harm Promise FOREVER, don’t you?”…”You should get up and fight through the pain”… “That’s pretty pathetic that you can’t even enjoy a beach and sand without it causing you so much pain”… “If you had been able to have more kids, Promise would have someone to play with”… and on and on and on. All day the messages that guilt feeds me swirl and fester in my head.

I send my friend Dawn, a desperate text message asking if there’s any way she can pick up Promise for a few hours to play and she graciously and cheerfully obliges.

But guilt rages on. Guilt about sleeping…again. Guilt about not being at the park playing with them. Guild about not being up cooking dinner. GUILT ABOUT NOT BEING ENOUGH.

I’d like to say that when Promise returned home from playing, I had my attitude straightened out, but I didn’t. My pity party and self-induced guilt was RAGING and my cranky, selfish attitude continued. Only this time, Chris was blessed enough to be the beneficiary of it as well.

And that pretty much was my day. Pretty ugly, right?

But see friends, that’s where God steps in. I am so thankful for him and for his Holy Spirit nudging me. I’m so thankful that he doesn’t let me go to sleep without walking into Promise’s room, kissing her sleeping head and then apologizing to Chris for my cranky attitude.

As much as I hate that GUILT has controlled my day, I know that GRACE will redeem my day.

And while it’s tempting to let my physical pain be the excuse for being short, un-loving, selfish, and impatient with my family; the truth is that it is no excuse. I am human and sinful. I need to ask for forgiveness for those things, both from God and from my family.

Once I have that sorted out and taken care of, I can realize that there are also things that guilt has been telling me that I need to ask for forgiveness for that I actually don’t.

I don’t need to feel guilty that I needed a day of rest. I don’t need to feel guilty for climbing down rocks. I don’t need to feel guilty for watching a Christmas movie in August rather than going to the State Fair.

“God does not demand that we keep up with anyone else. God only asks us to be faithful with who we are [and what he’s given us]- with all our limitations…If we are accusing ourselves, we are outside of God’s will for us, for our Comforter wants us instead to find hope and wellness through grace. Whenever we are made to feel guilty about matters that are unrelated to our actual sinfulness, we know that this sense of blame does not come from God, but from the temptations of the accuser” – Marva Dawn in Being Well When We’re Ill

Tomorrow morning I will have to wake up Promise in order for us to drive an hour to see my podiatrist in IL. I know false guilt will want to buckle into the passenger seat for the drive down.

But I’m thankful for God’s grace. That his mercies will be new in the morning and that I can (through His strength) attempt to control my attitude, despite the pain that I cannot control.

-Adri


Ruth’s Wheelchair

“Sister Lea and Ruth sends you greetings and a very big thank you.” – Sister Lucy, Amukura Orphanage

It brings me so much joy to share these photos with you of Ruth in her new wheelchair. Thank you for all you did to aid in her being able to have this!

For the backstory on this precious little girl and our effort to bring her a wheelchair, click on Dinnertime Leftovers and Twelve Dollars, But God… But God… But God…, and Pennies with Promise

ruth wheelchair 2 ruth wheelchair 1

-Adri


“That’ll be a great day…”

Tonight I’m writing out of a place of a lot of pain and hurt. I wish I could tell you that I’ve spent the day reveling in the joy of a flawless blood report, but that just wouldn’t be true. This is the part of living with a chronic condition that is so hard. It’s hard for me to try to formulate all of my thoughts into coherent sentences, but if I didn’t try, I’d only be sharing half-truths with you. I’d be attempting to make myself look stronger than I am, when the truth is right now, I feel crushed.

But I know God can use my crushed state of mind, too. It’s all or nothing and for some bizarre reason, I’ve chosen to share it all with you. Maybe it’s because I keep hearing over and over how God is using it to encourage those of you who are struggling with something that is chronic in your own life. It doesn’t change. There doesn’t even seem to be an end to it.

So for me not to share these feelings with you would make it out to seem like I am not human, that depression is not still a reality in my life, and that I don’t desperately want to be free from this stupid human body. (It’s not stupid. While I am so frustrated with it right now, I know deep down that my time here on earth in this body is a gift and a privilege.)

Let me explain why today was so hard, because I’m sure a few of you are completely bewildered right now at how I could be feeling all of this when I’ve just been told that I don’t have cancer.

This morning at my hematology appointment we received great news. A perfect echo of my heart and a stellar blood report. I’m healthy as a horse as far as my blood goes. This should be AWESOME, right?! Yes. And No. It’s complicated. Obviously, I don’t want to have Leukemia. I feel like I shouldn’t even have to say that, but I will, because I don’t want you to misread this next part of what I’m going to say.

Every time I start experiencing a new symptom and then the test results come back “normal”, it means another part of my “normal” function has died. And that is HARD.

It is hard to hear that these constant night sweats are most likely a result of my autonomic nervous system continuing to decline. It is even harder to hear that if that is indeed the case, there is no way to treat it. A part of my “normal” is dying. Again. And as I’ve said before, that takes some grieving time.

At this point, you might still be confused and asking, “Couldn’t there still be a possibility of a treatable bone infection?” Maybe. But after a few hours of phone calls this afternoon to doctors and nurses both in Chicago and here in Milwaukee, the verdict is leaning toward not doing a bone scan or looking for infection. The chances of an infection three years after surgery is almost unheard of. Plus, we’re lacking a lot of “concrete evidence” of a bone infection (as one nurse put it). I am not having fevers, the sore spot on my spine is not red or hot, etc. So where does that leave us? Exactly back at where I started when I walked into my Primary care doctor’s office one month ago; with a high likelihood that this is another ramification of a nervous system that is shot and worn out and continuing to fail.

And so that is what I’ve been sitting with this afternoon and evening. The heaviness of THAT. My antidepressants have made my mind function well enough for me to know that depression is hovering. I know the signs. My antidepressants are doing their job. They allow me the grieving time that I need, staying crumpled up in my bed, letting the painful reality of this new loss wash over me. By God’s grace and beautiful love, my mind is able to separate and sort out that it is OK to feel like this for a while, that it’s OK to fall asleep for six straight hours in the middle of the day, but that it’s also necessary for me to wake back up at some point, even though every part of my flesh would just like to be home, forever asleep, being comforted in the arms of my sweet Jesus.

If you’re in a place where your mind isn’t able to think like this or sort out these confusing feelings, please tell someone. I remember the place you’re at right now, and on nights like tonight, I’m very aware of the enormous difference that telling someone can make.

You need to know all of this because if you are in a really dark frame of mind right now, it is possible to move to a point where you realize it’s OK to feel the hurt without trying to numb it. And then from there you might be able to move to a place of realization that not only are you allowed to feel emotionally weak, but it’s a good thing because it allows God’s strength to be poured into your weakness. Your dark moments will probably always come and go, but you’ll start to get into a rhythm of mourning and then being filled up with God’s redeeming strength for tomorrow. It’s a process, but it IS possible.

Chris gave me the sweetest gift tonight. As he gathered my crumpled self into his arms, he simply said, “That will be a good day when you’re finally home, won’t it?…no, actually that will be a great day.”. All I could do was nod my head as warm tears spilled off my cheeks onto his head. He gave me the gift of knowing that he understands that this life is hard for me and that there is an eternity waiting for me that will be so much better.

But God chose to wake me up again and I know that while I’m exhausted, his constant mercy and goodness will be there in the morning. And so that’s what I find deep joy in. Not acing a blood report, but in the fact that the blood Jesus spilled for me on the cross is allowing me to wake back up again.

-Adri


A Restful, Invigorating Inner Climate

Two weeks ago tomorrow Chris and I found ourselves walking into the Columbia St. Mary’s Cancer Center building in downtown Milwaukee. Having spent a considerable amount of my life in medical buildings, I was struck with how peaceful this particular clinic was. The east wall of the waiting room was solid windows that displayed an impressive stretch of the Milwaukee Lake Michigan beachfront. There was a courtyard with cascading waterfalls and fragrant flowers. As I walked through the “chemo area” I noticed boards on the wall where patients could post notes about things they were thankful for. I couldn’t help thinking that maybe all hospital buildings should embody this same concept.

The appointment went as well as it could have. My doctor was kind and personable and even has a seven year old child, to boot!There was nothing glaringly obvious indicating cancer but on the same token, he wants to look further into the cause of these night sweats and my elevated eosinophil count. The type of night sweats that I’m having are typically indicative of something awry with my immune system. We talked through our game plan, which is essentially a few months of lab work, scans, possible biopsies, and lots and LOTS of waiting.

Tomorrow (Wednesday, 8/5 at 10:15 am) Chris and I will meet with my hematologist, again, to discuss the results of a blood smear that he ordered at my first appointment. For the past two weeks, he’s been studying my blood under a microscope, trying to discern and observe how my white and red blood cells reproduce. I’m continually fascinated by the way God has created our bodies and the knowledge he has given doctors. Tomorrow we will find out if my cell reproduction is normal or if there are irregularities. This will be a good indicator of whether or not there is a blood disease or infection going on. If he has noticed something “off”, I will go in for a bone marrow biopsy that would be extracted from my hip, in order for him to then study my stem cells. If my blood looks normal, I will most likely proceed to seeing a bone specialist to try and determine if these night sweats could be caused by a slow moving, underlying bone infection.

I also had an echocardiogram about a week ago to ensure that “all is well” with my heart and the vascular system that moves my blood in and out. This was precautionary more than necessary. Precautionary, so as to make sure that no sneaky infectious bacteria has decided to settle in and set up shop in my arteries.

An echocardiogram can only show what is physically taking place in my heart, though. If someone could invent an echo that showed the emotional and spiritual well-being of my heart, the results would look a lot like the cancer building I described above. On my heart wall, you’d be able to see a large “Thankful Board” on which I’ve been mentally posting little notes. One of the notes would have a quote scrawled on it that says,

“I’ll be praising God for all eternity, but only during my brief time on earth can I bring Him joy through praising Him in the midst of pain.”

This is a quote from the book “31 Days of Praise” by Ruth Meyers. After reading it, I immediately posted it securely to my heart wall.

I really have no “gut” feeling about what tomorrow’s appointment will bring. But I do know that God has been conditioning me for over 20 years to praise Him in the midst of pain, so no matter what the results of my blood work show, that is what I’ll do.

“Even in troubled circumstances, or when God does not choose to work in spectacular ways, praise can help us view our situation through different lenses. It can help produce within us a restful, invigorating inner climate.” -Ruth Meyers


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


Today I’m Looking Up

I spend quite a bit of my day looking down. Especially when I walk, I’m always looking down.

My sensation in my feet, because of nerve damage from my spine surgeries, is almost completely gone. I can’t trust the nerves to communicate accurately to my brain, so my body compensates through using my vision. I want to be sure I’m not walking on unsteady ground, about to trip over a misplaced toy, or step on something sharp or hot.

One thing I’ve noticed about this habit, though, is that when I’m constantly looking down, many times all I can see are shadows. The sun or light source is always above me, but objects and even my own body get in the way of that light and cast confusing shadows where I’m trying to walk.

photo 1

I like to think of myself as a person who doesn’t fear a whole lot. But recently I’ve been aware that I do still struggle with fear. I’ve been experiencing increased nerve pain in my feet that pulses relentlessly when I’m trying to sleep and pain in my knees from the misalignment of my feet and legs. I’ve been looking down a lot, trying to figure out how to stop this pain. Every time I look down, rather than finding answers, I am washed over with new fear. Primarily the fear of getting older and how that will affect my body.

There are other fears I’ve been struggling with. Decisions of where to send Promise for school next year. It’s been a rough year of Kindergarten and I fear making the wrong choice for her for first grade (and on). I’m fearful towards the possibility that my mom, who has been struggling with hearing changes for the past 3 (+) months, may need a complicated surgery on her head and ear. I’m constantly looking down at my phone or my laptop, searching for answers to these fears, but I am always just left with more confusion and fear.

I know that constantly looking down isn’t working for me. I need to look up, directly into the sunlight or Son’s light. That’s the only place that confusing shadows cannot exist.

photo 2

This morning I looked up every verse on fear that I could find in my Bible. I used an online tool http://www.blueletterbible.org to help me trace the origin of the word “fear” in both the Old Testament and New Testament. I came away with the following takeaways;

1. The only fear that should exist in my life is the fear of the LORD… of Yahweh. This word “fear” in Hebrew is “yare” which means to “have reverence”, “awe”, “dread”. This fear is healthy and vital for my life because it will lead me to the wisdom that I need and desire.

2. There is no room in my life for the “phobo” type of fear. The fear of people and what they can do to me. This type of fear will only tangle me up (Proverbs 29:25). I need to take this fear and replace it with the fear of God. The reverent awe of God. The understanding that God is the one who ultimately controls everything, most importantly life and death.

So today on this beautiful sunny day, I’m going to look directly into the light. Will you?

photo 3

I also ask that you pray for clear answers for my mom’s ear on Thursday. These tests will determine if her condition can be fixed through a non-invasive surgery or if she will need the more complicated surgery. We are obviously hoping and praying for the former option.

Thank you friends and enjoy your day in the sun!

-Adri


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