Tag Archives: Chiari Malformation

Keep Going

Hand pressing Keep Going“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face…You must do the thing you think you cannot do.” -Eleanor Roosevelt

This quote rings true with so many areas in my life right now, whether it be our journey into fostering, continuous struggles with my health or simply the courage to make various decisions that I know in my heart are the right (but not easy!) ones to make.

About a year ago I saw an orthopedic surgeon about pain that I experience in my right knee. It was nothing new but had been growing worse and so I was referred to him to look into it further. The belief was that due to the misalignment in my right leg, the joint was suffering damage, which could eventually lead to the need for a total knee replacement.

After gathering multiple X-Rays to try and determine if surgery could be done to correct the alignment in my leg, we were all quite astounded by the images that glowed back at us through the light box in his exam room.

The X-Rays showed leg bones that were strong, healthy and fully developed. The orthopedic surgeon, who has worked extensively with children at Shriners Hospital, was amazed at the a-typical results from a patient with my condition, Spina Bifida.

He further explained that his only conclusion for seeing such strength in my bones was owed to the fact that through everything I had never stopped using them. He said that when bone is stressed it actually in turn becomes stronger. It’s counter-intuitive thinking but we had the X-Rays to prove it.

“Bones are living tissue. Weight-bearing physical activity causes new bone tissue to form, and this makes bones stronger. Bones and muscles both become stronger when muscles push and tug against bones during physical activity.” -National Institute of Child Health and Human Development

Upon hearing his words, my mind immediately flashed back to countless times in the hospital after surgery where I had to “get up and walk” despite excruciating pain, to my parents instilling confidence in me by maintaining expectations for me to have the same household chores as my siblings, and then to my first week as a freshman in college in downtown Chicago. My apartment was only three to four city blocks from the EL (which took me to my classes) but to me it could have been three to four miles.

At the time, I wasn’t wearing any braces on my legs and each step felt like I had stepped in wet cement. That combined with the elements of weather made each trip to and from the brown line a mental and physical battle.

On each of those days, when life required me to get back on my feet and keep going, I often wondered if those activities might be the cause of me ultimately losing the function in my legs.

But here I was, years later, sitting and listening to a doctor tell me that those years could actually be attributed to making my legs stronger.

I can’t help but think about the direct correlation that this picture has to the rest of our lives. After all, the phrase “what doesn’t kill you makes you stronger” must exist for a reason, right?

I am constantly amazed at how God has created our physical bodies to reiterate the truths that He has laid out for us in His Word. Scripture repeatedly affirms this idea of suffering producing strength;

Romans 5:3-5 “More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

1 Peter 5:10 “And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.”

James 1:2-4 “Count it all joy, my brothers, when you meet trials of various kinds, for you know the the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.”

Romans 8:18 “For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.”

2 Corinthians 12:10 “That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”

The solution to correcting this knee pain ended up being more complex than we originally thought it would, so that is a surgery that has been put on the “back burner” for now.

But I was reminded of the important mystery of God’s redemption in the midst of pain;  that if we keep going in the midst of the suffering on this earth, God promises to bring strength to our soul.

-Adri


His Masterpiece

“What a reminder that we, in all imperfections, in all our inabilities– our disabilities– we are still HIS MASTERPIECES!” – Katherine and Jay of Hope Heals

I was nine years old and had been in the hospital long enough to make TV boring to a nine year old (that is a long time). I began sketching the characters on the cereal boxes that came on my hospital tray each morning…sugary cereals…I never got those at home. Toucan Sam, Tony the Tiger, Lucky the Leprechaun…I drew them all in watercolor pencils and the nurses hung them up on my hospital room bulletin board.

I was recovering from a series of four spine surgeries to untether my spinal cord and seal CSF leaks. I had contracted staff infection and lost nerve function to my bladder and bowels. The nerves that sent signals to my leg muscles had been irreversibly damaged, resulting in drop foot. It was going to be a long road ahead.

I began drawing more. I sketched wedding dresses out of “Bride Magazine” and copied illustrations out of “Alexander and the Terrible, Horrible, No Good, Very Bad Day”. Soon I had so much artwork that the nurses began hanging them in the patient rooms all across the pediatric floor.

That was the moment that I realized art could be both therapeutic for my pain and bring joy to others.

As I continued to fight to recover from these five surgeries and endure 18 more surgeries, along with major depression, art became as necessary as breathing to me.

The following pieces were all created throughout middle school and high school and express the unending roller coaster of emotions that I wrestled with; from despair over seeing my body disfigured and cut open, grief and mourning over losing function, perseverance and determination to get back up and walk again, and periodic choruses of joy in the midst of my depression.

falling apartfoot

laughlegsselfspine

So when I saw that Katherine and Jay’s LA based ministry, Hope Heals, was having a “call for artists” to donate artwork that could be auctioned to raise funds to send families with disabilities to their summer camp for FREE… you can understand how I felt I didn’t have any other option but to submit my artwork. This opportunity combined my two greatest passions.

I honestly did not expect my painting to be chosen and included in the live art gallery auction held this past Saturday, April 22nd, in LA. So, when I opened the email saying it had been chosen, I literally screamed (Promise was in the kitchen at the time…so you can ask her for an imitation of my reaction).

Below is a photo of the acrylic painting that I donated

the islands 1the islands 2

(12″x36″ acrylic on canvas)

This is a newer style of painting that I have been doing. The images are simply out of my mind. I love them because I feel like they represent the mental healing that I have experienced from the depression that I struggled with for years and years.

It is such an honor that it is being used to hopefully provide some degree of emotional, mental, or physical healing in another persons life through the ministry of Hope Heals.

You can view all the art entries that were auctioned off by clicking here. 💕

“For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.” Ephesians 2:10 NLT

-Adri


I’m Not Home

Female Runner Feet - Running on the Road - Women Fitness

(Caution: In a few paragraphs there will be a picture of my actual colon. If you get queasy, you may want to scroll quickly)

I am in so much pain.

Not because I had my entire colon removed three months ago, but rather because we joined a local gym and I’ve been “working out”. My quads are so sore. I put “working out” in quotations because I am ridiculously weak so at this point I consider it “just building up endurance”.

March 1st marked three months since I had over 4 ft. of large intestine (or colon) removed from my abdomen through three small laparoscopic incisions and one large incision on top of my C-section scar. It was my 23rd surgery.

( picture of my completely empty colon, upon immediate removal of my abdomen… it’s a little insane that all 7 lbs of THAT came out of me! )

The surgery went smoothly and I am thankful to have it behind me. There is always a risk of significant blood loss due to the vascular nature of this organ, but thankfully that risk never materialized. I was in the hospital for four days and had a few very significant events happen during that time (but those will come in another post).

Four weeks after my surgery (which has a six to eight week recovery time) we drove to MI to spend Christmas with my family. At the end of January, I started teaching Fashion Illustration II at Mount Mary University at the start of our Spring 2017 semester. Life’s brisk pace has continued as our family recently completed the necessary requirements of becoming foster and adoptive parents in Milwaukee County (a journey we started in October of 2016…also for another blog post) and Chris and I took a trip to Maui, HI to celebrate our belated 10 year wedding anniversary that occurred in September.

Life is finally starting to return to “normal” and by that I mean “manageable” and every morning I find myself staring into my bathroom mirror at a body I don’t even recognize.

There are new scars where scalpels and metal probes have pierced. There is skin that used to be supported by ribs and is now a helpless victim to gravity. There is still swelling (or built up scar tissue, I’m not sure which) at the incision site where they removed Promise from my body over eight years ago. And of course, there’s the flesh colored 3″x3″ sticker that covers up the portion of small intestine that will forever protrude from my abdomen and connect to my ileostomy bag … something that will now (at the age of 32) be a permanent fixture on my body.

It used to be that I only had the surgical manipulations of my body working against me. Now I have those and the natural process of aging.

If you add all of these changes to the deformities in my legs that I’ve lived with since Junior High School, the sight I see staring back at me in the mirror can be a little discouraging. I may look thin in clothes but I don’t feel strong or toned.

I don’t think I’ve ever written a blog entry revealing my insecurities about my “post-23 surgeries” body. Frankly, it’s because in the eternal-scheme of things this body will crumble away and there are more significant things to write about. But it is something I struggle with and have struggled with since my early teenage years.

I know that I looked for a woman living with a disability that could have been a sounding board for me at those vulnerable ages and seasons of life, so maybe I can be that for someone else.

One mental exercise that I do regularly is silently listing in my mind, all the reasons that my body is awesome. (cue the “Everything is Awesome” song from the Lego Movie). It sounds a bit silly but it helps! Instead of seeing legs that look underdeveloped and strange, I re-inforce to myself that I see legs and feet that have endured over 13 surgeries, three years of walking in Chicago, and carrying my (now eight year old) child to term for nine months. That is just one example. I take each body part that I’m feeling insecure about and do that same mental practice to it.

Am I completely satisfied with my body? No way. Am I thankful for what it’s overcome? Absolutely.

With all of that said, there is always room for improvement and I believe that our bodies (no matter how beat up) are temples of the Holy Spirit. We are told this in 1 Corinthians 6:19-20 and so we need to take care of them.

“Do you not know that your bodies are temples of the Holy Spirit, who is in you, whom you have received from God? You are not your own; you were bought at a price. Therefore honor God with your bodies.” – 1 Corinthians 6:19-20 (NIV)

This verse encompasses much more than simply the physical health and appearance of our bodies, but I do believe that it is a key element.

This is a new(er) way of thinking for me. Before correctly diagnosing my major depression and starting the medication that has aided in the healing of my mental health, my views towards my physical body ranged from compulsive and obsessive (i.e. my legs are so skinny due to my lack of calf muscles so I need to keep the rest of my body equally as skinny, even if that means barely eating, in order to stay proportionate) to indifferent and apathetic (i.e. if I don’t take care of my body, the quicker it will deteriorate and I can leave it behind through death). These feelings aren’t easy to admit, but they have been true at different seasons of my life.

I am thankful for the healthier view I now have about my physical body. I truly want to be as strong and healthy as possible in order to continue to climb the stairs in my house, foster children, watch Promise grow up, be an active and fun life partner to Chris, etc.. I know that being a good steward of the body God has given me, includes doing what I can (I emphasize this because I KNOW how limiting chronic illness can be and only you can truly know what your body is capable of) to keep it functioning at the healthiest level it can.

I know it’s ultimately a losing battle (it is for all of us, isn’t it?) but I want to “go down swing’n”.

The gym has the keen ability to push every insecurity that I have about my body to its highest threshold. I have to adapt almost every exercise that is shown to me, which immediately sets me apart from everyone. My legs from my knees down are simply dead weight that are void of sensation and movement, making them cumbersome at best. If I decide to swim, I am put in the “injured and elderly” water aerobics class and struggle to walk to the pool without my leg braces on, knowing that immediately after the class I’ll need to change my ileostomy bag because the adhesive will be soggy. I understand that people stare because they are curious and I honestly hold no grudge or ill-will against those that do, but it still hurts every time I see the direction of their gaze.

Essentially, the gym is a constant reminder that this place and this body are not my home.

I am thankful for a husband who loves me, a daughter who looks up to me, and friends who come alongside me to my pilates classes even if I’m bound to stand out a bit.

If you’re living with chronic pain and struggling with your self-image, I want to tell you that that is normal. Even though I don’t talk about it often, it’s often on my mind. I believe that it is another way God uses our suffering to transform our minds more and more into his perfect and unblemished likeness.

Give yourself space and time to grieve the physical appearance you hoped to have, but you must get up and keep pushing on, knowing that this in not your final home. Take care of it but don’t become obsessed by it. View it in humor and not in despair.

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.” – James 1:2-4

-Adri

 

 

 

 

 

 


An Eternal Perspective

FullSizeRender.jpg

(Written in August 2016)

Two years ago I agreed…actually sought out…to have a surgery that I had always considered a “last resort”. However, my health had reached a point where it now sounded like a dream.

Since my second spine surgery in 1995, I had lived with severe constipation due to nerve damage done to my bowels and bladder. The damage was irreparable. So at the age of nine years old, I learned how to self-catheterize and do a bi-weekly bowel routine that consisted of a large dose of laxatives followed by 10-12 hours of cramping, nausea, vomiting, dehydration, and occasionally blacking out.

Mentally, this routine was brutal. Physically, it became unbearable. I did this bowel regimen through high school, college, into marriage, through pregnancy (the worst), until Promise was six years old. (There were nights where I even nursed her while on the toilet! I’m sure she’ll love hearing that when she’s older.)

The day following this routine, my body would be completely exhausted. Once my Chiari Malformation was diagnosed, we realized that the continuous straining on these nights was exasperating the symptoms of this brain malformation. We knew it was a cycle that could not continue any longer, both in order to preserve my health and to improve my quality of life.

So in November of 2015, after much testing and discussion with my colorectal surgeon, I had a loop ileostomy placed. It has been a life-changing procedure that (even with its challenges) I am abundantly thankful for.

Recently I began having cramping, nausea, and vomiting. After two weeks of experiencing this, my colorectal surgeon sent me for an X-ray that confirmed I had stool in my colon. I was blindsided and shocked by this news, because I didn’t know this was possible after an ileostomy.  I have learned that with a temporary ileostomy (it can be re-connected to my colon) this can occasionally happen.

All of this has launched us into a (sooner than expected) discussion of when to go back into surgery to create a permanent ileostomy by removing my colon and rectum.

As I worked through the questions and emotions of removing these organs and my body changing, yet again, I felt tired and weighed down.

I cried. I slept…a lot. Then I woke up and I knew that crying and sleeping were beneficial for a time, but I also knew they couldn’t be my long-term solution for working through this grief.

Promise was at an impromptu sleepover and Chris was out of town. It was 11 pm (but I had slept all day) so I turned on my “Meredith Andrews Pandora Station” as loud as it could go and began doing the dishes. Those of you who have struggled with the heaviness of depression can understand what a huge step this was. All I wanted to do was crawl back under my covers, but I thought I’d try praising and thanking God…not even for the situation…but simply for who He is.

I realized in that moment, even if I couldn’t thank him for this new hurdle yet, I could still thank him for his character and his promises. Those are not affected by my circumstances.

As I sang, I cried some more, and then I felt his peace and joy wash over me.

There is a reason that “Praise” and “Thanksgiving” are mentioned as commands so many times in the Bible. They are vital to our health and can change our perspective when our situation is unchangeable.

The book of Revelation is a “revelation (in Greek, apocalypse) from Jesus Christ”** or a prophecy recorded by John. In Revelation 7:9-13, it describes the saints that have endured suffering in the name of Christ, have come out of the tribulation, and have had their robes washed white by the blood of Christ. And they are on their faces before the throne of God saying,

“Amen!

Praise and glory

and wisdom and thanks and

honor

and power and strength

be to our God for ever and ever.

Amen!”

– Revelation 7:12 NAS

I was reading a commentary on this passage and there are two powerful observations about this group of verses;

“1. They acknowledge the glorious attributes of God-his wisdom, his power, and his might.

  1. They declare that for these his divine perfections he ought to be blessed, and praised, and glorified, to all eternity; and they confirm it by their Amen. We see what is the work of heaven, and we ought to begin it now, to get our hearts tuned for it, to be much in it, and to long for that world where our praises, as well as happiness, will be perfected.” – Matthew Henry:: Commentary on Revelation 7, Blue Letter Bibl

Stuart and Jill also reflect on this idea of “getting our hearts tuned” for heaven while here on earth, in their recent book, “Improving with Age: God’s Plan for Getting Older and Better”. They say,

“Consider this possibility: Could it be that wasting away physically and being renewed spiritually are equal and opposite realities? Could both these processes be preludes to, and reminders of, the physical return to dust and the spiritual return to the Creator? Are we living now in processes that will be completed later in eternity?”

Praise and thanksgiving towards God in the midst of our suffering will transform our perspective to that of an eternal one and give way to chronic hope.

 ** “How to Understand the Bible: A Simple Guide” by Mel Lawrenz

-Adri

**Printed in the Winter 2017 Issue of Just Between Us Magazine. JBU is a magazine designed to “encourage and equip women for a life of faith” and was started by Jill Briscoe 26 years ago. To learn more about JBU, visit their website, and/or subscribe, click here.”

 


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.

puerto rico

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


Desiring the Healer more than the Healing

dandelion

One of the hidden gifts of suffering is empathy or “the ability to understand and share the feelings of another”. As my physical body continues to deteriorate and lose feeling, my heart becomes stronger and more sensitive. It’s a beautiful contradiction that shows, once again, how God is working out all things for the good of those who love him (Romans 8:28).

This empathy isn’t reserved only for people who are presently intertwined in my life. It gushes out whenever I hear or read about someone who has or is experiencing physical pain similar to mine.

Since the Bible is filled with stories of broken, pain-filled people, I’ve discovered that empathy plays a key role in scripture becoming personal to me.

I was reading in Acts 3, a story that I’ve read several times without feeling any emotional attachment to. This chapter chronicles the story of a crippled beggar who is miraculously healed during his encounter with the true Healer, through the apostle Peter. You can read it below for yourself;

“Now a man crippled from birth was being carried to the temple gate called Beautiful, where he was put every day to beg from those going into the temple courts. When he saw Peter and John about to enter, he asked them for money. Peter looked straight at him, as did John. Then Peter said, ‘Look at us! ‘So the man gave them his attention, expecting to get something from them. Then Peter said, ‘Silver or gold I do not have, but what I have I give you, In the name of Jesus Christ of Nazareth, walk.’ Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. ” Acts 3:2-7

As I read through this story again, my heart caught in my throat at that last phrase… “instantly the man’s feet and ankles became strong.

My feet and ankles have not looked or functioned normally since I was about eight years old. The appearance of my feet in the past few years would send a “normal” person racing to the ER. I have a very limited amount of sensation in them and an even more limited amount of motion. I have poor circulation, so most of the time, my feet are a purple-ish blue color and cold to the touch. I have periodic neuropothy (similar to a diabetic foot), arthritis from previous operations, scars, and occasional nerve pain that is so intense it will cause my entire autonomic nervous system to overreact, leading to severe muscle cramping all over my body, numbness, headaches, etc.

feet

To put it simply, they are a burden. About two weeks ago, they became even more of a burden when I developed a tiny crack in the dry skin on my left heel. We had a cold snap up here in WI and temps were in the double negatives for a few days. This sudden drop in temperature caused the skin on my heel to crack open, which is not uncommon. However, because I cannot feel pain in that foot, I wasn’t aware of the crack. One morning I woke up and my foot felt different…different than my normal. My ankle felt like it had been bit by something and was having an allergic reaction. It felt hot and stiff and as the day progressed, the redness, swelling, and stiffness only increased.

Once I discovered the crack and realized what was actually going on, I knew that I needed to have it looked at immediately. While a crack like this in a normal foot would be painful and a nuisance at most, in my feet I knew it could quickly spiral into an infection that could put me in the hospital, surgery, or even an amputation if it wasn’t treated early enough.

After obtaining a last minute appointment with a local podiatrist and confirming through X-Ray that the infection had not spread into my bones or muscles, I was put on 24-48 hours of bed rest and two strong oral antibiotics, with the back-up plan of going to the ER for IV antibiotics if there wasn’t immediate improvement. Thankfully my body wasn’t resistant to the oral antibiotics (a risk because of how often I am on them for UTI’s from self-catheterizing) and the infection began to subside.

While the infection cleared, I began to have burning and stinging around my stoma (the opening in my abdomen where my small intestine “hangs out”). Since my digestive system now gets rid of waste before it goes through my colon, everything comes out in a semi-digested, watery state. The colon is what absorbs the majority of water and left-over nutrients, so when waste comes out of my stoma, there are still active digestive enzymes that can eat away the flesh on my abdomen. My body has adapted to this change, but when the oral antibiotics began to flush through, it aggravated my skin creating a 1/4″ of raw, open skin around my stoma. Needless to say it hurt quite a bit. It also made it difficult for my bag adhesive to stick, so while my infection was clearing, I now had a new issue at hand to deal with. On top of all of this, my right heel developed a crack in the skin as well.

All of this, because of something that is so “normal” for most people.

I tell you all of this in order to give you a glimpse into why I suddenly connected with this crippled man whose feet and ankles had failed him.

Out of empathy, I could imagine his excitement as he felt warm blood rush through his veins and strength surge into his feet that had felt “dead” for so long. But even more than that, I know the prolonged joy that would have come over him because not only did he experience healing, but he encountered the Healer himself.

Singer/Songwriter Natalie Grant had the lyrics to one of her songs in one of her Instagram posts. It said,

“Help me want the Healer more than the healing, Help me want the Savior more than the saving, Help me want the Giver more than the giving, Help me want You, Jesus, more than anything.”

Through this man’s story and because of the empathy I had toward him, God nudged me with a truth that I needed to be reminded of. God wants me to know Him and desire the healing of my soul more than the healing of my body. No, it’s not wrong to want physical healing, and I am so thankful that my feet are beginning to heal. But that can’t be my focus.

If you look back to the first few verses in this story it says, “When he saw Peter and John about to enter, he asked them for money. Peter looked straight at him, as did John. Then Peter said, ‘Look at us!’. “

This crippled beggar noticed Peter and John come into the temple, but his gaze must have shifted from their faces downward to the earthly possessions he could get from them, because Peter tells him to look at them. I imagine that he was also looking down, ashamed of what he was. I think Peter wanted the man to look at him in order to see the power of the risen Christ that was living in him. He knew that ultimately that is what the man needed in order to be healed and to restore his dignity.

So often, I let my gaze shift downward and I forget that growing my relationship with Jesus is my ultimate goal.

If you continue reading Acts chapter 3 and into Chapter 4, you come to verse 4 that says,

“But many who heard the message believed and the number of men grew to about five thousand.” Acts 4:4

The “message” that this verse is referring to is the message of the gospel that Peter and John were able to then share with the people who “were astonished and came running to them…” as a result of  witnessing the miraculous healing in this beggar’s life.

If this man had refused to shift his gaze upward to Peter and John, he may have encountered a small amount of money…maybe enough to buy a meal to temporarily satisfy his hunger…but he would have missed the opportunity to encounter the Holy Spirit who would reset the entire course of his life and in turn, touch five thousand more hearts that day.

I don’t want to miss an opportunity like that because I’m looking down.

Do you?

-Adri


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

 

 


“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.

photo 1 (1)

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*


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


%d bloggers like this: