Brain Surgery Recovery

Mummy in the Hallway

weatheringchiari2 Comments

I’ve been having horrible pain in my head. There is a sensation where it feels like I’m laying on a tennis ball. It’s on the back of my head and off to the right side. It’s been like that since surgery, but it’s been getting worse and making it harder to sleep. The pain started moving to the front of my head and my vision became distorted yesterday.

It was one of those situations I’m constantly finding myself in of where I’m trying to assess and analyze my body and decided if I need to go in to the hospital or not. I know that this is complicated and needs to be addressed by the neurosurgeon. I tried calling them several times over the last two weeks, but haven’t heard back.

Yesterday, my nausea and pain were so high. I went to the ER at OHSU just to be sure everything was “okay”.

My mom took me around 6pm last night and we got home this morning around 5am. I met with the resident who thoroughly went through my history and came up with a plan to do a “migraine cocktail” through an IV and to do some bloodwork and a CT scan.

After the IV was started and the CT scan was done they sent us back to the waiting room for a few hours and I tried to sleep in a wheelchair with an IV drip bag.

The room was full and really noisy. One person loudly read from the middle of his crazy book, with commentary, for all of us, whether we were interested or not.

I had been told to go to the desk when my saline was done. When my bag was still half full, a nurse unexpectedly came and took us back to the back. She said she needed to find me a bed so I can lay down and get some rest. Three other nurses met us in the back and all worked together to make up a bed in busy hallway and arrange everything around me to make me as comfortable as possible.

It was completely unnerving. My mom and I kept making big eyes at each other, over our masks (required at OHSU). We knew they must have seen something in the scan and we knew we had to just wait for the doctor to come back to talk to us.

The bed was a bed pushed against a wall between two rooms in the noisiest hallway.

They tucked me in with tons of blankets and a towel draped across my eyes and a mask. A nurse walked by and commented that, “a mummy haunts the halls.” To some that may look like torture, but the few hours of broken sleep in that hallway was some of the most restful sleep I’ve had in weeks.

One of the nurses who helped set me up, told me that if he just saw me and didn’t know my story he would think I wasn’t in serious pain, but knowing my medical history and surgeries he knew I was just being very stoic. My mom said that if my pain level is at 3 or 8 I look the same. He said he kind of admired it, but he was also concerned cause he thought if I was in pain or needed anything I wouldn’t show it or ask for help. I told him my primary doctor has told me that is a problem because I present like I’m feeling well when I’m struggling. The nurse told me to remember “the squeaky wheel gets the oil.”

Once I was set up, the doctor came and told me that there was a finding of a fluid pouch on the outside of my skull and another inside. I knew of one of them from when I was readmitted in CO, they did a scan and saw a seroma, which the surgeon said was normal after surgery.

The ER wanted to run some more tests and consult with the neurosurgery department. They had sent the CT scan to be read by two different radiologists and got “wildly different” readings on what they were showing. The ER wanted to admit me, but didn’t have enough information to do so.

The neurosurgeon came and ask some questions and wanted an MRI for more details.

I did the MRI around 2:30am and was brought back to the hallway. Then a Neurologist went over all my meds with me and tried to help me figure out what meds to take for what symptoms. She made a few adjustments and some new suggestions.

I was responding to the migraine cocktail, so they could treat the migraine and dehydration (from the nausea). They think there was a migraine layered on top of the surgery complications, and I’m still healing.

We came up with a new at home rescue plan and prevention plan specifically for migraines to try as a first line of defense, until I meet with my neurologist. The migraine meds weren’t working before surgery, so we’re trying them again to see if they’re more effective now, after surgery.

We waited a few more hours for the MRI report, but OHSU computers and system was down for updates. They could read the report from the radiologist, but couldn’t access the scan. They think it showed the two pockets of fluid, they one on the outside, the seroma, may actually be smaller than in CO, they just couldn’t confirm it. So if that’s true, that’s good news!

Still not sure about the other one, inside my skull, though. They said to follow up with CO about it because my “anomaly is unique”. They think that the extra fluid is causing the extra pressure and pain. Their immediate concern was if there was a CSF leak that would require immediate intervention.

The neuro team came back to the doctor and said they thought it was a surgical issue and to follow up with CO. The doctor said if the MRI report was reread they would call us, but I was able to go home.

We spoke with the surgeon’s office in CO this morning. We are going to send a disk of the scan to them so the surgeon can compare it with the scans from their hospital.

So my next steps are following up with neurosurgery at OHSU, my neurologist, and my primary. Then returning to CO in April for my follow up with the team there.

Overall, it was a really positive ER experience. I have not been to the ER at OHSU before and I felt very cared for there.

A friend texted me while we were pulling into OHSU and asked how I was doing. She got a prayer chain going for me and two families showed up at our house with food today. We really needed and are grateful for the friends and family that rally around us. 💜

God bless,

Shae

Stir Crazy

weatheringchiari1 Comment

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

Home & Recovering

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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.

God Bless,

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

TOMOROW IS THE DAY!!

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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.

https://www.gofundme.com/f/support-shaes-brain-surgery-and-recovery

Simple Kindness

weatheringchiari1 Comment

These last few days, leading up to this morning, I have been filled with stress and anxiety over the neurology appointment scheduled for this morning. I could not imagine how the appointment would go – whether good or bad. My prayers over the appointment have been simple. I feel like sometimes I do not even have the words to to pray what I am feeling. My prayer was for a kind and understanding doctor and a clear next step.

Those prayers were answered! The neurologist was so kind and gentle. He listened. I brought my notes compiled from all my symptoms, that I am always asked to keep. He went over all of the symptoms with me and asked me follow up questions.

He started the appointment by telling me that he spent some time reading through my records and that he thought he had a good idea of what’s been happening. We talked about Chiari Malformation and he asked a ton of questions about my symptoms before surgery and how they have changed after surgery. He did a physical exam and then I gave him my printed notes I brought.

He took a few minutes to read them and the said that my symptoms are “intriguingly frustrating”. We discussed the symptoms and he did another physical exam and said that he would like to do some more testing. I am still waiting for the EEG that was ordered at the last appointment, they gave me the number to call and check in with that.

The neurologist also placed an order for a four hour neurocognitive test to evaluate and get a baseline of where my cognitive symptoms are at.

The neurologist did not give me a diagnosis or share too much of what he was thinking. I really appreciate and respect that, especially after having so many misdiagnosis’s and doctors jumping to wrong conclusions, or thinking out loud. I follow up with him in three months.

The after visit notes were the most comprehensive I have seen. He restated the key parts of my notes I brought and summarized my new symptoms really clearly. In his notes he wrote that he thought I would benefit in the future with a multidisciplinary team approach because of the complexity.

While I still do not have a solid answer, I do have a next step and I felt heard by the neurologist. Thank you to everyone for your steady prayers and encouragement.

Blessings,

Shae

“But the LORD stood with me and strengthened me.” – 2 Timothy 4:17

Speak to My Heart

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There was a breakthrough this week!

I am grateful to share good news! Physically, this week has been a rough one. I’ve been struggling with a migraine, nausea, head pain, numbness and tingling and a heavy fatigue. I had the infusion clinic on Monday, physical therapy and did my second round of the Emgality injection on Tuesday. I’m really working hard on building my neck muscles and I’m sure that has contributed to the headaches. 

Now the good news -A few days ago, we followed up with calling the neurology department (my primary care’s office asked us to) and requesting a conversation with the manager to discuss my last appointment. We put a request in and they said it would take a few days to get back to us. That was no problem to me because my hopes were pretty low. I’ve been feeling a lot of despair over this whole situation. 

Yesterday afternoon, we got a call back from the manager of neurology and neurosurgery wanting to hear what we had to say. We spent over an hour on the phone with her and shared with the whole story of my diagnosis and the lack of care I’ve had. I was getting restless during the call, I felt a sinking feeling descend on me and dread over the outcome. 

My physical therapist said that I should ask about a “care coordinator”. I have talked with my primary care’s office and asked about a case manager they said that is for people with a chronic diagnosis. Afterwards we realized that would still apply to me. I’ve just been coming up against so many roadblocks. 

The woman we talked with yesterday was so kind and understanding. We told her that I want the inaccuracy in the notes from my appointment fixed or a note in there saying it was inaccurate. We also went over how I have been stuck going back and forth between being sent to neurology and neurosurgery. 

She listened to us and then laid out her plan. She asked if she could scheduled me for an appointment with a neurologist who is new to our system, but has a ton of experience as a neurologist. She said he is known for his bedside manner and would listen. She said that’s who she would send her child to see. She also said she would have a pre meeting with him to go over all my notes and records before I met with him. 

She asked if I wanted to look him up and research him and then call her back to schedule. I just wanted to schedule, I’m tired of waiting.

She told me that she will be my advocate in the system and to call her for anything. 

The appointment she scheduled me for is this Thursday!! I was not expecting it to be that soon. 

I am still wanting to be hopeful, but I’m feeling cautious. I am praying this time will be different and a step in the right direction. Please be praying with me for this appointment. I have been listening to Austin French’s song Rest For Your Soul because it speaks to my heart. I have been feeling so troubled and weary over everything. I am praying for change and waiting on a miracle, with a list of unanswered questions. I never imagined that I would be diagnosed wit a chronic neurological condition or have brain surgery. This is not the life I imagined for myself or wanted. It has really been weighing on my mind and heart and I just feel weary and burdened. I am clinging to the promises of God. That He will be my shelter and my peace. That I will find rest for my soul and a peace in Him, because I do not carry this alone.

Are you tired and troubled?
Weighed down by a heavy load?
Praying for change, searching for faith
Waiting on a miracle

Are you drowning in questions?
Can’t believe where the road has lead
There’s one who knows, the heavy you hold
And He says

“Come to me
All who are weary and heavy burdened
All who are hurting
Come to me
I’ll be your shelter
My yoke is easy, my load is light
And you can find rest for your soul
Rest for your soul”

There’s a peace that can hold you
And a power greater than your own
When you feel so small, back to the wall
That’s when Jesus calls

“Come to me
All who are weary and heavy burdened
All who are hurting
Come to me
I’ll be your shelter
My yoke is easy, my load is light
And you can find rest for your soul
Rest for your soul”

You were never meant to carry that weight alone
You were never meant to carry it on your own
Come to the cross, lay it at the feet of Jesus
Come to the cross, lay it at the feet of Jesus
There is one who knows, the heavy you hold
And He says

“Come to me
All who are weary and heavy burdened
All who are hurting (hurting)
Come to me (come)
I’ll be your shelter (I’ll be your shelter)
My yoke is easy (ooh)
My load is light (my load is light)
And you can find rest for your soul (rest for your soul)
Rest for your soul” (rest)

“Rest for your soul (rest for your soul)
Rest for your soul
And you can find rest”

Rest For Your Soul, song by Austin French

Answered Prayers

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Friends,

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.

Be blessed,

Shae

Valley of Blessings

weatheringchiari3 Comments

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