Faith

Two Months Post-Op: Prayers, Delays, and The Surgeon’s Good News

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Thank you everyone for praying for my appointment with the neurosurgeon in Colorado. The prayers were needed. Travel was hard on my body.

We flew Sunday and rested Monday. Tuesday was appointment day. We were up at 4:30 a.m. our time to take a Lyft to the clinic across from the hospital for x-rays. It had to be done early so the radiologist could read it and send it to the surgeon to review before our appointment. Usually, I would get the scans done here and send them over ahead of time, but the office missed it.

After that, we walked to Starbucks to wait three hours for the neurosurgery appointment. We spent the time organizing my symptoms, notes, my questions, and questions from my physical therapists and neurologist.

After sitting in Starbucks for hours, we finally went across the street to the hospital. When we walked into the clinic, the receptionist turned around and called for a nurse. The nurse ran around the corner and said the surgeon was called into emergency surgery and I would need to come back on Thursday.

Right away, my mom and I said in unison, “We flew from Washington.” There was a scurry around the corner, and we waited a few minutes for a nurse to come and say that we could come back at 3:30.

We went back outside and had to figure out what to do while we waited. We didn’t want to take another Lyft just to come back later. We walked around a bit and then ended up back at Starbucks. It became a very long and exhausting day. I thought it would take up the morning and early afternoon, and then I would have time to rest before we traveled back home.

Finally, the time came to meet with the neurosurgeon. He is pleased with my progress. My scar is healing very well. The x-rays show that all the screws are in place and exactly where they need to be. We talked through my symptoms and how to treat or monitor them. We talked through the scary symptoms that sent me to the ER at OHSU. He had a fresh take and thinks they are related to post-surgical complications, not nerve damage. Most of the symptoms, he thinks, can be managed by medication and physical therapy. It was really good news and an answer to my prayer. Thank you everyone for praying with me for healing and through this very stressful time.

This is the most recent x-ray I had done in Colorado. The curving in my neck is from surgery and being in the brace. The brace is to keep those screws in place, while they solidify into place. I will do physical therapy in the future to strengthen and straighten the neck. The second screw going down is the one that gives me chills to look at 😬

I’m now able to lift 10 pounds and can start weaning off the neck brace. My neck muscles are very weak, so it’s going to be a slow process. The brace has a knob in the front that you can pull up and twist to adjust it up or down. Right now, the brace is supporting my head. During the day, I’m going to start turning the knob to make it loose, and then when my neck gets fatigued, adjust it back up (beginning with 2–5 minutes).

When my neck gets a little stronger and used to holding itself up again, I’m going to move to a soft collar, which doesn’t support your head as much but still protects it. Eventually, I will work to one of those travel pillows—not for support, but to keep my head movements in range.

Physical therapy is starting slow. I’m going for walks daily with my walker. 5 minutes out and 5 minutes back. There is also therapy for my eyes. I have a popsicle stick with the letter “A” on it. I hold it out in front of me and pull it toward me until it blurs, then I restart for a few sets. Then I do the same thing sideways. It’s going to be a long time to build up strength—especially since I was so deconditioned before this surgery, plus the other two surgeries. My body is weak, and this next year feels daunting. I probably have two years of 4–5 therapy appointments per week in front of me once I work up to them all. That will include balance/neck therapy, POTS protocol, speech/cognitive therapy, occupational therapy (handwriting, grip), and strain-counterstrain therapy. They almost all come with homework too.

I asked the surgeon how much longer he expected my pain to last and how high it should be. My pain is still incredibly high. My mom keeps a schedule and wakes me up throughout the night to stay ahead of the pain. I still wake up multiple times a night in pain, and there’s usually a point in the day I can feel myself wanting to slip into a meltdown like a child because the pain gets so bad it feels like I can’t talk. The surgeon said he absolutely expects it to be that high right now. He said to expect the pain to come down and feel better by the 6-month mark.

At 12 weeks, in December, I’m going to have a CT to check the bone graft and make sure it is still in place. That will also be when I have another check-in with the surgeon virtually.

These last few weeks felt so turbulent and so exhausting. I have a long way to go, but I made it past the two-month mark. I’m so grateful for all the prayers and messages. I received messages of prayers and encouragement in the moments I needed them the most. I came home to a gift from a friend and a card from an unknown sender. I don’t know who sent the card or how you got my address, but thank you so much for the card and encouragement.

The last month has been about surviving, and I haven’t been up to responding much, but thanks for all the love and support. 💜

Shae

Whoever sent this card to me, thank you so much, for your thoughtfulness. I received it the day I got home and it warmed my heart.

Pre-Op Update

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Driving to CA for the specialized scans before surgery, next week.

During my post-op I had some bloodwork done. I received the results the following day, which shows that my liver is damaged. 

I called my doctor, but he was out of the office and I spoke with an on call doctor who doesn’t know me. 

Before the second surgery I hardly took any medication, now I take quite a bit. I don’t drink any alcohol because of how it will interact with my medications. One is a beta blocker for my heart rate. This doctor told me to stop drinking and I would be fine. The more I tried to explain I don’t drink, the more unconvinced he was. I felt like I was a cliché character who is committed in an asylum and tells everyone, “I’m not crazy!”

I decided to just wait till my doctor got back to the office. When he did he said he thinks it could be the medication I take for seizures.  I’m already weaning off of that for surgery. I also take a headache medication that could be contributing. But, when we talked to the pharmacist, she said I’m on such a low dose of both that she doesn’t think it’s the medication causing it at all. 

My doctor says it’s not enough to disqualify me from surgery, but once I’m through the woods with surgery I’m going to need to follow up on it and we are going to keep a close eye. It could just be my body under intense pressure and stress. 

Please pray for healing for my liver as we don’t know what’s going on with that.💜

Thank you,

Shae

Last Minute Travel For Specialized Scans

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Update: I had my pre-op yesterday. They did an EKG, chest xray, bloodwork, MRSA swap, etc. Now, that’s off my list!

Since the neurosurgeon thinks  undiagnosed EDS is why my surgeries keep failing,  I’m going for a special upright MRI, before the surgery on the 25th. They’re trying to decided if my neck is unstable and I need to have it fused. My mom called around found the closest place is in Renton, WA but they’re a 5 week wait. Renton referred us to a clinic in San Jose, CA that can get me in next week. 

We are now driving down to CA to get this MRI, so the surgeon can see it before surgery. Luckily, more likely God arranged, we have family friends  that live in the area that we can stay with. 

We are going to drive down Sunday, get the scans on Monday, and return Tuesday. Then we leave that Friday for CO. 

It’s going to be a lot for my body. 

This is all falling into place this morning and there’s still a lot of moving pieces and we are having to roll with the waves. Please pray for us as we are trying to accomplish everything that needs to be done before the surgery date.  My mom has been spending everyday on the phone going over details and the list of calls keeps growing. 

Please pray for clear communication between all the doctor’s offices, insurance, case managers, etc. It is overwhelming how many things need to be done and arranged for this to all workout.

Pray for safe travels as we go to CA and back and then on to CO. 

Pray for all the moving pieces and everything that is still up in the air. All the things that need to come together. 

Thank you for all your prayers and support. My friend made a GoFundMe to help with this very unexpected and fast approaching brain surgery.

3rd Brain Surgery Support

May God Bless you,

Shae 💜

Here We Go Again???

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Friends,

It’s hard for me to write this because I’m having to accept and acknowledge that a third brain surgery is rushing at me like a freight train. I wanted to wait until I had more answers.

I have been struggling with migraine/head pain, nausea, blurry vision, worsening balance, etc for over two months now. The pain dramatically drops when I lay down flat, but doesn’t go completely away. 

I’ve been to the ER 4 times now for pain relief. A CT showed a pseudomeningocele (collection of fluid) on the surgical site. My primary care doctor ordered a series of MRIs with and without contrast for follow up along with a CINE motion study (CSF flow- the fluid moving around my brain and spinal column). 

The MRIs show that there is a fluid collection on my surgical site. I reached out to my neurosurgeon in CO and mailed him my MRI scans. He called me this week and wants to see me in person. I got an appointment with him in the first week of August. I’m also on the cancellation list so I could get in sooner. 

There’s a leak somewhere in my dura (lining around the brain that was patched) that is causing this collection of fluid and it probably needs a surgical repair meaning a third brain surgery. 

I met with my primary care yesterday to come up with a pain management plan until I meet with the surgeon. He put a referral in for the infusion clinic again (getting hydration and migraine medication). I’ve stopped all of my physical therapy for now until I’m cleared to go back. 

This waiting period is so hard. I just want to know what is happening and I’m having to wait for answers and waiting for the outcome. 

Thank you for your continued prayers on this very long journey. 💜

Shae

“God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.” 

~ Psalms‬ ‭46‬:‭1‬-‭3‬ ‭

My Lament

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Hello everyone! This post is going to be a little different. I don’t have any big health updates or huge prayer requests. Many people ask me how I am and how I am really doing. That is a hard question for me to answer. I usually reply, “I’m fine” to keep it simple. Recently, I’ve begun to reflect on why it is so hard to answer that question.

I started this blog to post group updates to save time. Then I caught a glimpse of the dark chronic illness world, on social media, and decided to also use this blog to bring some hope to others who are struggling with chronic health problems. As I’ve shared my health struggles and some of the fallout from my diagnosis, I’ve tried to keep it in a somewhat positive light. While sincere, that is only part of my story.

Here’s my honest answer for, “how are you? These are some of my late night thoughts that loop in my head.

There is a heavy grief I carry around with me: the grief of the diagnosis, the grief of brain surgery, and the grief of exile. The hope of life being “normal” followed by the disappointment of a failed brain surgery, more complications, and then a second brain surgery with its continuing fallout. The grief has been hitting me hard. I’m sad for the life I lost and the future that will never be, I’m angry over that loss and I’m angry that I feel so off kilter. 

After my first surgery, I started therapy to talk through the trauma of the diagnosis and surgery. I learned that when someone is faced with a heavy medical diagnosis they go through the same stages of grief they would if someone died. Denial, anger, bargaining, depression, and acceptance.

  1. Denial That gut wrenching feeling of shock. Not being able to wrap your head around it. Pretending it’s not there or not that bad and trying to convince yourself there’s an easy fix or maybe pretend it doesn’t exist.
  2. Anger: I felt a little angry in the beginning, but I think I was in shock until I was wheeled into the operating room. Initially I felt like the rug had been pulled out from under me. But I’ve been feeling the anger more. I was told I would return to college and work after four months. I’m still waiting. It’s been four years and the path back is still not clear. So many “whys?” “Why is this going on so long?” When I had my second surgery the question was, “why do I have to go through this again?” “When do I get my life back?” I felt and still do feel anger at the medical establishment for how slowly things move and things getting missed. I am frustrated with the slow healing and my body that seems to have a will separate from my own. Wrestling with God’s timing being so different from my own. Deep in the late nights when my insomnia won’t let me sleep, all the questions, fears, and doubts come to a boiling point and I feel like I’m about to be crushed under the weight of it all. Why has this gone on so long? Where is the healing? Why are there so many unanswered prayers?
  3. Bargaining I’ve definitely had my fair share of “I’ll do anything” and countless prayers of pleading “what ifs?” or “if only.” I could do so much more if I wasn’t sick.
  4. Depression This one is a little tricky for me. This was my initial diagnosis when the doctors didn’t know what was happening so just threw that label on me. This one is harder for me to acknowledge, but come on, I’ve had two brain surgeries, it’s there.
  5. Acceptance There are times when I feel like I’ve accepted this whole thing and I feel a sense of peace. This is my life now and I am establishing how to cope and live with it. I see all the blessings in my life and how the Lord has carried me through all these trials.

Something I’ve learned about grieving is that you don’t always go through the stages in order. Or you can work through one stage and feel like you have moved past it only to cycle through them all again. You will run through the cycle multiple times. 

Before my second surgery and before I knew the first one failed, my therapist told me that I hadn’t allowed myself to lament. That I needed to let myself feel the grief. She encouraged me to do what King David did and call to mind all the good things and the ways God has been good to me. The prophet Jeremiah also did this in the book of Lamentations 3:19-23,

 “I remember my afflictions and my wondering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet, this I call to mind and therefore I have hope: Because of the LORD’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.

It’s hard for me to admit the struggle and the internal battle because I don’t want to drown in negativity and bitterness. That would be a pretty easy ocean to drift in. There are times where my faith is tested and times where I feel so weary that I feel I have nothing left in me. There’s a part of me I recognize as sometimes fronting it, that denial stage, and I just want everything to be what it was and “normal.” Then there are the moments of anger, when I feel the world moving on without me. 

I read a quote recently from C.S. Lewis,

“I sat with my anger long enough, until she told me her real name was grief.“

That was the lightbulb moment where I realized that this restlessness that I can’t quite put my finger on is grief. Grief over my diagnosis, multiple brain surgeries, endless recovery, all the fall out in my close relationships and grieving the life I lost to this illness. 

But I’ve also learned the Bible is a book of suffering. Oftentimes, we tend to focus more on the victory we have in Christ and the celebration and neglect the parts of suffering. Jesus himself was described as a man of sorrows acquainted with the deepest of grief. He cried out on the cross in his final moment,

“My God, My God, why have you forsaken me?” (Mark 15:35)

I’ve begun to try and model some of my journal entries like David’s laments in the book of Psalms. To bring my troubles and anguish to God. All of it. The hurt, the anger and sorrow, and then to write about what I know to be true of the Lord’s character. The tender mercies in my life. I’m definitely struggling. Adjusting my view on how my life would go and changing my expectations.  My schedule stays the same each week. Four days of physical therapy plus any additional scans or appointments. Then the rest of the week I am at home resting and managing my symptoms as they come and physically recovering from my PT workouts. I can feel pretty isolated and cut off from the “rest of the world.” I feel lonely and I struggle with wanting to do more, but still being limited by my symptoms. Sometimes, everything just feels monotonous, even my prayers. It’s hard to admit that. 

I realized I can’t keep waiting for some big shift or change to happen in my life. I feel like I’m always waiting for something barely in the distance that I can’t quite see that will change my life. I guess I’m starting to work towards the “acceptance” part. So, perhaps that is a prayer request.

Recently, I went to a concert and did my usual concert preparations by googling all the artists and listening to their music. I found a song that hit so close to my heart that I had to pause it and breathe. It beautifully and hauntingly articulates the sorrow and grief of loss. The struggle of believing, but lamenting the loss. The song is called, “Nowhere to Be Found,” by Australian Christian singer/songwriter Nathan Tasker. After the concert we were able to meet Nathan Tasker and talk with him about his song and the impact its made on me and my family.  

I took a fall with no safety net
I felt my face hit the ground
After a second to catch my breath
I felt you kick me when I was down

Losing a loved one is hard enough
Three pushed it over the edge
So I carried the footprints of my daughter and son
To the place where they say you live

But you were nowhere to be found
Nowhere to be found

When the long line of dinners came to an end
We made a meal of our own
Out of cold habit we both bowed our heads
And felt the silence of our home

Where you were nowhere to be found
Nowhere to be found
Nowhere to be found

Am I not shouting loud enough?
Is there more than the top of my lungs?
Oh I used to feel your love
Where has it gone?
Nowhere to be found

Now I look at the world like a crystal ball
Usually from the outside in
I see people I love get the life that I lost
And I try to be happy for them
But it feels like a town unacquainted with grief
Protected like a child in the womb
Oh but looking for you hanging around on those streets
Is like looking in your tomb

Where you were nowhere to be found
Nowhere to be found
Nowhere to be found
Nowhere

This song says everything I can’t. The parts of my grief that I am still processing and don’t have the words to describe. The doubts of where is God in all of this? The pain of watching those you love move on while you feel stuck and hollow. I love the part of feeling like you’re in a town acquainted with grief and the comparison of how looking for Jesus there is like looking in His tomb, where He was nowhere to be found.

There’s still an empty tomb and there’s still joy and new mercies that come in the morning. That is the pattern of lament. You address God, issue a complaint, a request, and then an expression of praise or trust in Him. We pour out our hearts – all our grief, anger, and sadness- to our God who listens and cares. We turn to him in our sorrow and then conclude with the hope of what we know is true of Him and His character. Lament turns us towards God while our grief and sorrow tries to pull us away. But, we know that God loves us and this life and its troubles are not the end for us.

Your Sister in Christ,
Shae

Stir Crazy

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Here is some of the nitty gritty of my recovery-

These last few weeks of my life have been so hard. I’m bed bound most of the time and even with the pain meds I’m still feeling a lot of pain. I’m mostly lying in bed. Isla moved out of her room so I could be on the first floor and not have to confront the stairs. I keep falling and I’m relying on my cane.

My mom got me some sketch supplies and watercolors cause I was going crazy just laying in bed. I got a lap desk off of amazon that’s adjustable, so I don’t have to look down.

I am not supposed to move my head and neck much. I can do small “princess nods”, but I can’t see the floor when I walk or twist my neck and body. Using the cane has been so helpful with my balance and fatigue.

I’ve been out of the house a few times for medical appointments and once for a dinner. I go on car rides to the store or pharmacy and wait in the car, just to get out of the house. It takes a lot out of me.

My fatigue is high and my energy is very low. I have a hard time standing for too long. Sometime, my head gets heavy and I need to lay it down or my vision goes black and I feel like I’m about to faint. I’m supposed to take it easy, but still walk a little. As soon as I start moving, the pain and symptoms definitely get worse.

My insomnia is worse than ever. It takes forever to find a comfortable position to sleep with pressure on my neck and head. I’m constantly waking up to adjust the pillows and blankets, get ice packs and take my pain meds. I’ve also been having a lot of nightmares that are making it harder.

Isla comes and sits with me, but she always makes me laugh so hard I’m scared I’m gonna tear some stitches.

We’re home now and made it through surgery, but in a lot of ways we are still in the thick of it.

I’ve had several doctor’s appointments and there’s been a ton of pharmacy runs.

The insurance is pushing back a lot on some of my medications.

Over the weekend, there was a mess up with the prescriptions and we thought we had more refills than we did. The bottle had multiple refills written on it but the pharmacy, said there system can’t process that.

I had to call my doctor and because it was the weekend they said that it would be better for me to just go to the ER than go through the on call doctor. Which we did. They gave me just enough to get to Monday to talk with my doctor.

My doctor did everything he could on his end, and it got sent to insurance who is denying it.

We are all stuck in this cycle of it goes to my doctor, to the pharmacy, then to insurance and the back again. Please pray that this all gets sorted out.

Just a few more weeks and I’ll be through the worst of it and on to the next chapter of healing and working with a physical therapist. I also be able to wash my hair with something other than baby shampoo.

Thanks for all the messages and checking in with me. Sometimes it takes me awhile to respond, but it really does encourage me. 💜

Shae

Readmitted

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Sorry for the late explanation. I needed some time to calm down, restart and get and travel home.

Very long complex story, but I was readmitted because i had not had a bowl movement since before surgery. They released me before that happened saying it would at home. It never did. We called and they said if it was painful to go in, which is was so we did. We thought it would be something they took care of in the ER and we would be out that night. They came back in and said because of all the stitching neurosurgery wanted me readmitted for observation.

So, I was readmitted a scans showed a Seroma (fluid collection at the surgery site) that the ER was concerned about. The surgeon later told me that it’s very common and they would be surprised not to have one. That the ER always makes a big deal out of it.

During my 23 hour stay, I was not fed or given any fluids through an IV or a cup of water. Whenever I hit the call light button it was ignored. The doctor came in for around 3 mins and said all my problems were because I have an addiction to pain meds. (The one I just started taking after brain surgery on Monday). The only thing this doctor did was cancel ALL my meds for 10 hours. I went without pain meds other than Tylenol. There were a few medications the nurses even told me that had no idea what those were for and I had to explain how during brain surgery they stopped my CSF flow and I lost of CSF fluid so they filled me back up with saline and it takes time for the to become CSF, so that medication they stopped was to prevent the headaches that go with that. I asked for my meds several times and was always told to just wait for them to ask the doctor. They also asked the doctor if I could have a small bowl of oatmeal and an IV for hydration. They finally came back and said they could see the doctor was reading their messages, but not responding. They said we could fire her and get a new doctor, so I formally said that’s what I wanted to do. Another couple hours and they come back to say, I can’t fire her because she is the only doctor working that floor right now. They also let it slip that the doctor had also gone to empathy training before.

It gets to be a whole mess of meds being ordered and then canceled “this” is gonna happen but nothing does. I am in so much physical pain, starving, dehydrated and I don’t feel safe. I could write a whole post on medical gaslighting. It’s real and dangerous. I felt scared and so I stood out of my hospital bed and started taking off all the monitors and got dressed. I told my mom I wasn’t safe and was leaving. That I would follow up with my primary care back home who I love. There was no clear reason why I was in the hospital. I had already met my goal and was declining from no food or water. The nurses kept wanting me to stay for the next shift because there would be a new doctor and I could be reevaluated. They convinced me to have a meal and to just wait for a few hours or a new doctor. I did. Only to find out right before it would be the same doctor. I think they wanted me to stay because once you hit midnight again the hospital can charge for another full day even if I’m only there for a few minutes after midnight.

The doctor finally started sending in meds, but smaller doses than I take (according to the plan created by my neurosurgery team). I told my mom I was done with this pettiness and just wanted to go home where I know my parents can take care of me. I was physically not in that much pain and suffering at home.

One of the nurses I love checked me out before midnight and we got the number to call about that doctor. When we go back in two months for the follow up appointment I might want to follow up with what happened in person cause that was wrong. It took days to get my pain manageable again. I also have other conditions like POTS and fibromyalgia that were caused to flare because of the lack of care I was receiving. I have to be on it with my health. With the foods I eat, hydration and medication. Not even mentioning brain surgery. I was denied all of that under this doctor’s “care”.

I’m sorry it’s taken a couple days to update about this. I’ve had nightmares about it and it’s still real upsetting me to think or talk about it.

Shae 💜

Hanging on by a Thread

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I can feel my strength getting weaker. My heart getting heavier. Every day is getting harder. I’m having to use a cane now to help with my balance and lightheadedness. There is so much breaking my heart from my illness and physical pain and the impact this illness has had on relationships. 

Life’s just hard. I’m trying to take it day by day, but that sometimes turns to hour by hour. The ground is feeling more unsteady with every step forward. 

Sometimes I feel so shaken and fragile as each day brings me closer to the brain surgery. I’m feeling so weary and tired. I wish all of this was already behind me. 

(Here’s an inside look into how my prayer goes sometimes)

I was praying earlier about my struggle and questioned why this was happening to me again. Why does it feel worse than before? I asked God to give me the strength I don’t have and to carry me now because I’m too tired. I told God I felt like I was only hanging on by a thread. That there’s no way out for me. 

I thought about that phrase “hanging by a thread” for a second and began to imagine a thread and the image in my head took on the old hem of a tattered robe.

The woman in the Bible who bled for 12 years and touched the robe of Jesus was my first thought. 

Honestly, that story has become a hard one for me to hear and read. There has been some unintentional misuse of that story towards me. I had someone I know compare me to the woman. They told me that if I just had more faith and decided to reach out and touch Jesus’ robe, I would be healed. 

These last few years, I have had many people tell me things like that. If I just had more faith, prayed more, or confessed my sin I would be healed. Someone even asked me what my parent’s unconfessed sin was. 

I slowly began to realize I felt like the woman who was isolated from her community and church. She was known for her illness. It’s been really hard and I struggle sometimes to be in church or with a group of believers. I feel insecure and tainted somehow. I feel like everyone knows my prayers haven’t been answered and I’m marked. I know this is irrational thinking, but the insecurity, feeling different from my peers, and not having a “normal” young adult life 

It is easy for me in the moment when these things are being said to brush it off, but with my insomnia and the fatigue at night, the lies begin to distort the truth. 

I lie awake and wonder why has God not answered my prayers. Did I do something wrong? Am I not enough as I am?

I read a book by Costi Hinn called, More Than a Healer. I loved how he described that way of thinking. This is my summary, but he describes that way of thinking as making God’s love transactional. That we have to do or say the right things for Him to bless and take care of us. 

The one thing above all I have learned from this experience is my faith is not built on anything other than the tender mercies and love of Jesus. We are not promised a life free of worries and pain, but we are promised the unconditional, never-ending love of God that surpasses all understanding. 

I find myself avoiding the story of the woman who touched the robe of Jesus because it would make me feel angry and confused about why healing hasn’t come for me. I don’t know and I may never know. Full healing may never come for me on this side of heaven, but I know it will come. I have a promise of a future with a new body and no more pain. A place with no more tears and heartbreak. 

When I was praying about having on by a thread and then thought of the woman and the robe, this time I thought of Jesus’ robe tattered and worn with threads hanging off the bottom.  He was described as a man of sorrow. He carried the sorrows of the world. My sorrows. 

I realized that yes, I am hanging on by a thread. The thread of the robe. The robe of the one who will lead me to life everlasting. 

The Book of Job is one of my favorite books of the Bible. One of my favorite passages of scripture is after all of Job’s questioning and debating, God answers him through a whirlwind. He asks Job a series of questions showing the full awesome power of God and the smallness of man. In God’s love, he restores Job’s life. Job ends by saying, 

“I have heard of You before, but now I have seen You with my own eyes.” 

Thank you for all your prayers and support,

God Bless, Shae

Come What May

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I love concerts, the planning and anticipation. Going to events is different for me now. I have to time it and plan for days of rest before and after the event. At a concert, I am trying to be fully present in the moment, but at the same time tuned into my symptoms and trying to manage them, so I can be there. I have polaroid sunglasses that my physical therapist recommended I wear, even indoors, to help with overstimulation. Often, I have to leave and find a quiet place to take a break. 

Isla and my mom are my music buddies. We always share new music and talk through everything about the songs. One of our favorite bands is We Are Messengers. We’ve seen them in concert several times and love them. Their songs were on my playlist I listened to in the hospital after my first brain surgery. 

They came to Oregon back in October, so Isla and did some dog sitting to get tickets. 

The week before the concert was when the first MRI came back with the findings of a fluid collection. I was scheduled for a neurosurgery appointment, but still had to wait a few weeks. I was already feeling very sick at that point and could tell my physical symptoms were getting worse. 

I was disappointed that I felt so sad and heavy during this concert that we had all been waiting for. I don’t go to many big events like that, so it was a big deal. A lot of planning of symptom management and coping went into this. My doctor says it’s good for me to have an event or something to look forward to that will help keep my mind occupied. 

 I was so upset that to have this MRI  hanging over me the whole night. I always have this feeling of wanting to be fully present and not miss anything, but I feel like I’m always able to be fully in the moment. I think that comes from losing and missing out on so much because of my illness. 

It was an amazing concert and we had so much fun. There were a few times I had to sit down and close my eyes. I popped an instant ice bag on the back of my neck to help calm some symptoms that helped. They played one of my favorite songs, Come What May.  But standing up and singing “come what may” while you’re waiting on an appointment with a neurosurgeon to discuss a collection of fluid in your brain, was easily the scariest moment I have ever experienced in worship. 

I couldn’t sing it and I felt so angry. Angry with my life, for the life I lost, the life I have with this illness and how unclear and scary the future seemed. This is not the life I ever imagined for myself and there’s times I resent it. I resent my illness and the struggles it brings both physically and in relationships to with people who are close to me. It’s so isolating. 

I wrestled with God so much during that song. I think I was angry with Him too for how heavy everything felt and how I can never see a stopping point for this pain and struggle. Angry with how abandoned I felt. I was also angry at myself for not wanting to sing the phrase “come what may”. It was just too real and too scary. I kept thinking to myself can I do that sing that with sincerity and I am dreading my future. 

I remember pleading with God that I wanted nothing more coming my way and begging for a break and for some relief. To let things be calm for a little while so l could feel like I wasn’t constantly barely keeping my head above the water, about to go under any moment. 

I remember during this song feeling a heavy foreboding feeling sinking into me and I just knew something was wrong. Something was wrong with my body. I knew then the MRI scan was something more serious than I wanted it to be and that something was coming. In the middle of the song, I felt an overwhelming panic and despair, I dropped into my seat and wept. My mom and sister sat with me and we prayed together. 

On the way home we talked about the concert and that moment. I explained how that was one of my favorite songs, and my thoughts in that moment. It’s easy to sing songs like that when you feel far removed from trials, but it’s different when hardships they feel like they’re about to drop on you at any moment and crush you. 

Isla in the back seat quietly says, “it doesn’t change the meaning of the song. The truth is still the same.” She’s right of course, but I have struggled with that song ever since that night. It honestly made me feel angry and restless. I didn’t want to be confronted and think about the possibilities and questions it brought up. The big one was if my faith strong enough to be able to proudly and fiercely say to God, “come what may” knowing that I was probably up against another brain surgery and brutal recovery. 

I think I was feeling guilty for my faith feeling worn and lacking. I know that God is perfect in His love and would be faithful to me, but it all felt like too much. I didn’t want any more pain and suffering. I want my life before all of this illness back. 

A few weeks after that concert, is when I found out that the fluid collection is caused by a leak in my dura (the inside lining of your brain) and is still actively leaking and slightly growing. There’s scar tissue, and decreased CSF flow, which could be caused by the scaring or the fluid, possibly both. This is why I feel so sick and have developing mobility issues. I’m using a cane now. 

I heard “Come What May” on the radio a few days ago, right before we left home to fly to Colorado for surgery. My family was in the car, so we listened to it. 

This time though I heard it differently. The part of the song that I heard the loudest was “you’re still my rock, my hope remains, I rest in the arms of Jesus. Come what may.” The truth of that sank deep. 

He’s my rock in this time of suffering. There is nothing I can do to change this situation. I can’t stop the need for brain surgery or cure this incurable condition, and the changes and new symptoms, God does not change. God’s love and faithfulness to me has nothing to do with any of my abilities or lack of, it has nothing to do with my fears and the endless questions of what if’s. My hope is in Him and Him alone. He is the same on the mountain tops as he is in the valleys. 

We are now for CO for me to have my revision brain surgery TOMORROW. The surgery is to remove the fluid, scar tissue, and part of it is exploratory to see exactly where the leak is and what is going on and causing the blockage. 

Please pray for me.  Pray for my family. It’s not my first brain surgery, so we know in some ways what to expect, which is terrifying, but there is still so much unknown. I feel scared and dread for what’s coming, but also hopeful that this will be that last surgery and bring some physical healing and improve my quality of life. 

So, while this is not at all what I would have chosen for my life and I’m scared, and don’t know what the future holds. I can say that God is still good to me. I see his tender mercies and His love for me. 

Sometimes sorrow is the door to peace

Sometimes heartache is the gift I need

You’re faithful, faithful

In all things

In every high, in every low

On mountaintops, down broken roads

You’re still my rock, my hope remains

I’ll rest in the arms of Jesus

Come what may “

Thank you all for your continued support and faithful love and prayers.

Shae