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. 💜
I’m home now since Thursday night. Thank you all for the constant prayers and the steady support and love.
I’m exhausted and have been sleeping most of the days away. My body physically feels worn. It’s hard to move, but I’m making myself go up a flight of stairs and just want to walk around. Some days are easier than others. If I lay still with an ice pack and some meds I can manage. It’s the moving around part that’s hard.
Isla has been so gracious and is letting me sleep in her room in the lowest level of the house, my room is on the highest floor. Which freaked out everyone (including the medical team).
A few family and friends have briefly stopped by, but I am mostly sleeping. I don’t actually remember all the details of my first surgery, but I really don’t remember sleeping like this.
I have to wash my hair and incision every day with this baby wash type thing. One of the nurses told me to be prepared that I am going to lose some hair in the coming months from the medication and my body being under stress. That happened last time, so I’m ready for that. I already cut my hair shorter so it’s easier to manage and grow out.
I saw my primary care doctor yesterday. My incision is a little swollen, but we’ll just watch it for now.
I made a playlist of everyone’s suggestions and I play it all through the night. It’s very eclectic and lots of it is new to me and gives me lots to think about.
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.
The other GoFundMe had some problems, so my friends Amy Munoz and Heather Hartrim-Lowe have organized a new one. Tomorrow is the day i am having my second brain surgery! We barely made it out here to Denver, because of the weather, but we are here!
We appreciate all of your support, it’s taking a lot to be here and the expense of the surgery itself. They need me to stay out here for two weeks to make sure there are no complications. Then I will have a 10 day follow up appointment with them where they will remove my staples and do an evaluation to clear me for the flight home. I also need to come back to CO in two months for a follow up appointment.
I’m using a cane now because I have developed some mobility and balance issues. I’m losing the fine motor skills in my hands too and barely able to write with a pen. My ability to do math and keep track of time is gone right now, adding 2+5 is beyond me and time is confusing. There is short term memory loss also. The headaches are nonstop because of the fluid blockage in my brain. Hopefully, this surgery will heal and restore those things or at least stop the progression and will greatly improve my quality of life.
We would like to cover January 15, 2024 in prayer for Shae as she goes in for her 2nd brain surgery. Please join us in praying for Shae: every part of her procedure and recovery, the doctors and nurses, hospital staff, hospital, operating room, recovery room, and Shae’s family. Let us pray that in all things God’s will be done.
Shae had brain decompression surgery in March 2021 for a rare condition called Chiari Malformation (kee-AH-ree mal-for-MAY-shun) Type I. Since then, Shae has experienced complications, including a leak and scar tissue that is growing like a weed at the site of the previous surgery.
Last year Shae had over 135 medical appointments which does not include the ER and urgent care visits. There have also been dozens of trips to the pharmacy and calls to doctors and insurance, not to mention all of the scheduling. It’s overwhelming!
Shae is going to a specialist in Colorado who is familiar with this rare complication. Shae hasn’t been able to work or return to school and needs support for travel to Denver and upcoming medical bills.
Shae’s 2nd surgery is scheduled for January 15th, 2024. The goal of this surgery is to remove the scar tissue and replace the initial duraplasty (the outer covering of the brain). The hope is to stop the cerebral spinal fluid leak. In addition, exploratory surgery will look for additional complications. After surgery Shae will need to stay in Colorado for ten days. At her ten-day follow-up exam, the doctors will assess her recovery and remove the staples before releasing her for travel home. Shae will also need to go back to Colorado for a follow up in two months.
Please consider helping Shae and her family financially as they navigate this extraordinary medical journey.
Weathering Chiari 