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 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.”
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.
There was a HUGE answer to prayer today!! I finally got an appointment with a Neurologist after a year-long wait! I have only been able to see a neurologist twice since I was diagnosed with Chiari Malformation two years ago, and that was after I had brain surgery. Once Chiari was the diagnosis I was sent to a neurosurgeon.
I had my appointment with my doctor today and we discussed the issues with referral, all the systemic issues, and not being able to get an appointment with a neurologist until March. He told me that he was going to reach out and talk with two neurologists at OHSU that were recommended to him by the pediatric neurologist. He was also going to reach out to other neurologists too.
Before I had surgery none of the migraine medications I tried helped because my headache and pain were physically caused by my brain stem being compressed and squished by my skull. My brain decompression surgery fixed that. Post-surgery I am feeling other types of headaches that were probably overshadowed before.
My neurosurgeon and a neurologist both agreed that I have at least three different types of headaches/migraines. While my brain has been healing, I have not tried many headache medications, just one and it didn’t do much, it just left me groggy and irritable. Today, I asked my doctor if he thought there was a medication I could try for my constant headaches.
Since I have had brain surgery my blood pressure has been on the lower side. I have always been on the lower side of normal, but now I am just a few numbers off from it being a concern (my last reading was 97/56). Beta-blockers are usually what is used for migraine prevention, but my doctor said that a side effect they have is dropping blood pressure and heart rate, which makes him nervous. He did put me on a different kind of preventative medication, and I should know if it is helping in a month. It is not supposed to stop the migraines completely. It is just supposed to lower the pain down a notch and cut down how many migraines I get.
We also discussed getting a patient advocate to help navigate everything. We left the appointment and then about an hour later a manager from the office called and said that my doctor had talked in depth with her about the issues and she wanted to talk them through with us. After we talked, she asked if she could make a few calls and then call us back.
Five minutes later she called back with an appointment NEXT MONTH, on the 20th, with a neurologist at Good Samaritan Hospital in Portland. She said the neurologist said that he wants to go over everything and help find a root cause. Praise the Lord!! Thank you to everyone who prayed with me!!
I also had a great weekend! Yesterday, I went up north to a concert in Chehalis, WA with my best friend, Mercedes, to see Mac Powell and We Are Messengers. It was such a fun day and so refreshing and needed time with my friend. We have been friends since we were twelve when we met at Bible camp, the same week I gave my life to Christ. I have always been grateful for our friendship, but these last couple of years I see what a treasure it is from the Lord. She took good care of me.
The concert was amazing! There was this moment when I was standing singing songs that I listened to while I was waiting for surgery, hospital stays, and the times I could not make it out of bed or off the couch. There I stood in a crowd of believers worshiping the Lord for all He has done for me. He has been so faithful to me and steadfast in his love.
At the concert, a woman came up to me and said she felt the Holy Spirit wanted her to ask me about my health and to pray with me. It turned out that she also has a chronic neurological condition. The three of us ended up talking and praying together for two hours after the concert. It was beautiful.
We were also able to meet the lead singer of We Are Messengers, Darren Mulligan, which was amazing. We talked together for a few minutes, and I felt encouraged and hopeful afterward.
There were moments yesterday at the fair that were hard on me physically. I had a lot of nerve pain, headache, weakness, and numbness, but I was determined to have a good time and Mercedes was a great help to me. I even went on two rides which is something I did not think would happen. We spent a long-time walking lap around the rides trying to find the ones that would be gentle and less likely to trigger an episode. We went on the Ferris Wheel and a swing.
I felt it afterward, but it was not the overwhelming, sending me to the ER kind of pain. This afternoon I went for my weekly infusion and now I am going to rest and have a quiet week. God is good. His mercies are new every morning.
It is hard to believe that it has been four weeks (yesterday) since surgery. It feels like it happened yesterday.
My pain is under control for the most part, my neck still bothers me a lot and there are times where I feel like I can feel every strand of hair on my head. I have started to go off all the meds, which means I am able to start sleeping through the night. Before, I had to wake up several times each night for different meds. I am working hard now on getting my sleep routine back to normal. I am still taking naps, although not as much as before.
The Physical Therapist, at the hospital in Colorado, told me that this next year is going to be a year of unpredictable energy. He said that my first milestone would be two weeks and then four. I have hit the fourth week and I am now able to wash with shampoo that’s not baby shampoo. My hair is so happy now! I have a lot of hair and it didn’t like being washed with baby shampoo. I have lost a lot of hair and there has been lots of breakage. I am thinking about cutting some layers to blend it all together.
My next milestone is my first physical therapy appointment next week, which will mark five weeks from the surgery. They warned me at the hospital that there is still a ton of movement that I still cannot do right now, so not to feel discouraged when there is not much they are doing with me at the appointment.
A year ago, I would never have imagined that I would have brain surgery. There are moments where it does not feel real. It feels like a dream or a passing thought. Then I run my fingers over my scar and feel my hair that is growing back. It is still hard to believe all that has happened in such a short amount of time, for something that has been a struggle for almost 6 years.
It is a full year of recovery and I may not know what symptoms have/will clear up until this next year has passed. While surgery relives a lot of the symptoms, it is still not a cure. The neurosurgeon warned me that not all my symptoms may go away and some of my symptoms he said may or may not be caused by Chiari. It is hard to know for sure. Some of the side effects of the medications I’ve been taking, since the surgery, mimic Chiari symptoms. As I continue to heal and move away from all of the medications that layer will be lifted too
I am very hopeful though. I feel that surgery has already helped, even though I still feel some symptoms. I must keep reminding myself that I have a year to recover and heal. The brain fog I was having seems to be gone. I already feel more present in the moment, despite the exhaustion.
God has been so good to me through all of this. I have seen Him moving when everything seemed not to be moving at all. He has reminded me of His love for me through those around me. All of you who have and continue to pray for me, thank you so much for all of your love and prayers.
When my family and I first began discussing the possibility of making multiple trips to Colorado, the expenses required seemed out of reach. I had already made multiple trips to Seattle to meet with the neurosurgeon there and hit a dead end. I knew from the beginning that it would be different in Colorado, but I still didn’t know what it would like like. When we seriously discussed it and prayed about it, my mom said she felt confident that God would provide. Though so many of you, He has. Several times a donation would unexpectedly come in to meet the immediate need that we were facing. Often in the exact amount that was needed. God’s hand has so clearly guided this journey. Thank you to everyone who helped me financially. I feel so blessed and somewhat overwhelmed. I am still waiting to find out the full extend of the medical bills
Please continue to pray for me. I am still uncomfortable and in some pain. It is a hard adjustment to not be able to move and do as much stuff as I usually do. It is hard to watch life move on for everyone around me and then feel like it is moving really slow for me. Pray also that I would get some rest. I am still not sleeping through the night. My biggest request is patience for healing. The doctors said this would be a time of quiet rest and recovery, but I have not felt the rest lately. I am still waking up several time night and feel exhausted during the day.
I have been looking for the small blessings in each day. The last few days have been super sunny and warm. I have been able to sit outside on a blanket and enjoy the weather and the purple Chiari garden my mom and Isla planted for me. Watching it grow and and blossom has been a beautiful thing to look forward to watch.
May God bless you,
Shae Sobottke
I Needed The Quiet
I needed the quiet so He drew me aside,
Into the shadows where we could confine
Away from the bustle where all the long day
I hurried and worried when active and strong.
I need the quiet though at first I rebelled
But gently, so gently, my cross He upheld,
And whispered so sweetly of Spiritual things
Though weakened in body, my spirit took wings,
To heights never dreamed of when active and gay.
He loves me so greatly He drew me away.
I needed the quiet. No prison my bed,
But a beautiful valley of blessings instead -
A place to grow richer in Jesus to hide.
I needed the quiet so He drew me aside.
~ Alice Hansche Mortenson
Weathering Chiari 