It’s hard to explain and put into words, but I sometimes find myself not quite feeling like the me I know. My body is under an enormous amount of stress and changes. I don’t even have a clear understanding of how the surgery is impacting my body right now. The pain is there so strong sometimes I can’t even gather a sentence in my mind. It’s very frustrating to feel trapped in this body I can’t communicate with.
In the ICU when I first woke up the nurse told me I would only need to wear the brace for a day or two. When the doctor came in and said I had to wear it for three months, no exceptions, they had a special one for the shower, my eyes got hot and I had to hold back tears. It seems a small thing to cry about at the time, but it was another example of control I don’t have over this situation.
I didn’t think adjusting to this brace would be so difficult. It impacts and changes everything I do. There’s also a layer of fear of what happens when I take it off for the few seconds to put on the shower brace. Since, I had that hard fall right out of the hospital I’m terrified of falling again. My hands, knees, and feet were so bruised and I can still feel the tenderness. Luckily, I had X-rays that showed nothing shifted in the fall. I got these yoga sock with sticky grabbers on the bottom and they work well on carpet.
I guess as I’m writing this I’m realizing how fragile I feel. If I wasn’t able to get my hands out in front of me in time and my head hit the floor I don’t even want to think about what that could’ve meant.
I’m trying to stay as independent as I can, but I’m in a season where that’s not really possible. I need help with everything and can’t be left alone by myself. I’m so grateful for my family and that they truly help me and never make me feel like a burden. I just thought I was past this place on my life and wouldn’t be back here for a long time.
I think from how big of a surgery and the fall my body is just hurting and covered in deep bruising. I’m constantly shifting positions to try to get some relief. I found pillows help a lot to sleep with. I prop myself up with the brace. Nights are hardest for me to sleep. All my doctors kept asking why and I had no idea. My mom gently pointed out she thinks from her observation it’s because I feel safe enough to sleep. When she said that it hit me so hard. That’s the truth. You think that having three brain surgeries would make you a “pro”, but there is still so much I don’t know. The hospital forgot to send the packet for a neck fusion, so I never got to prepare with that. The discharge papers are incomplete so we have to call the hospital again.
There’s just still so much unknown. My body is aching and sore. it’s definitely been through a lot and my stamina level keeps dropping. If I get up and brush my teeth I need to lay on the couch for a few mins.
It used to not be like this. I used to hike, run, horse back ride, always was trying new sports. I loved being athletic and trying new things. That part of me is gone. I woke up one morning feeling “off” and never got better.
I’m sad it happened when I was so young. Sometimes I feel like I’ve missed out on the young adult years. I see my peers hitting all the milestones while I feel stuck in an endless loop.
I get all anxious that there’s this deadline of life goals that I’m not meeting and a schedule that’s in constant change.
Sometime, I just want to feel normal. Not carrying a “rescue bag” for if I get an episode while I’m out. I would like to not always be hyper focused on how much energy I have and how to conserve it or stacking things so I can get the most done without triggering fainting. Some days my body feels so foreign to me.
I don’t know God’s plan for my life now or in the future. I don’t know why I got sick so young and then spent years with misdiagnoses that caused more damage. I don’t know why I feel like I’m on the outside watching inside all the time. These are questions I’ve brought up with God a few dozen times, but I never know the answer and I may never get to here in these shadow lands. But, the one thing I know with certainty is that even when I was begging God to heal me and all the nights I cry myself to sleep. He is there with me listening. I’ve come to the decision that I don’t need to know the “why’s?” It wouldn’t change anything. I would still be here sick and restless, and my God would still be loving me through it.
I’m far from perfect. I dont know why God has not healed me or if that’s in His plan for my life. I do know that He loves me. He loves me so much he became the Man of Sorrows and bore my sin and my sorrow to the cross. Now I have an eternal home with a loving Savior waiting for me.
I started this blog to give updates on what was happening with my health. But the more I write and the more I learn of life and meeting people , the more I know we are all suffering from silent wounds. It may not be several complex neurological conditions like me, but there is something in your life that is causing you pain. Maybe you’ve prayed and begged God to remove it but it stays. Jesus was a Man of Sorrows not just for me and a select group of people. He was a Man of Sorrows because he carried your pain, your sorrow and your sin with Him to the cross. He did that for you because he loves you.
“He was despised and rejected— a man of sorrows, acquainted with deepest grief. We turned our backs on him and looked the other way. He was despised, and we did not care.
Yet it was our weaknesses he carried; it was our sorrows that weighed him down. And we thought his troubles were a punishment from God, a punishment for his own sins! But he was pierced for our rebellion, crushed for our sins. He was beaten so we could be whole. He was whipped so we could be healed.”
I got new x-rays and my staples out!! There was absolutely no damage when I fell. I just need to move slower. The skin around the staples was tender and ready for them to come out, so it was not that painful. I was able to have my neck brace off for a few mins while they took the staples out and examined the scar. Everything looks good. The scar is hard, but that’s because they retracted the muscles during surgery so they are cramping now and readjusting.
Staples out! The less painful removal out of the staple removal.
It’s still scary not knowing exactly what to do with this incision. This is my third brain surgery but a physical therapist and occupational therapist usually will come in and help you shower and show you how to move your body. (It’s a horrible awkward experience, but I’m all for safety). The therapists came in when I was in the ICU and said the would come back later when I was downgraded. I got downgraded and there was a bucket of shower items, but they never came to show me how to use them. There’s a bowl you used to brush your teeth so you don’t bend your neck and I don’t remember that, but this is my first neck surgery and it was all new to me.
That hardware is hard to get used to. Trust me I feel it 😂😭
This is another thing looking back that is ridiculous. the nurses were not sure if I could have ice packs. They kept retelling me I didn’t have a fever, so didn’t need one. I met with one of the PAs for the surgeon today and he said they get scared with neck braces and brain surgeries and don’t know what they’re talking about, but that I can and should use ice.
When I was discharged they also didn’t know what my shower protocol would look like and didn’t show me how to shower with a neck brace. I was told I was the only post neurosurgery patient in the neuro ICU, they were a bit unsure about those things and it seems like they were just focusing on making sure my vitals were okay.
My mom and Isla helped me shower my hair the day I got home. We were all a little scared. It was 4 days post opt and I had clumps of blood and inflammatory fluid cemented in my hair.
Today they looked over my x-ray and said that everything is okay after the fall. The brace kept everything in place. I also got a special brace for the show, more uncomfortable than the regular one, and I got some replacements covers for the brace so it won’t get gross. The brace goes directly over my incision so we have to keep it really clean.
The other thing is my throat is really sore from being intubated. I had spots all over my mouth and tongue, but thankfully they passed. Now I just have a hoarse voice and what feels like a thousand cuts in my mouth. I’m bracing before I swallow. They gave me a numbing mouth wash and some rinse which is helping. This is my third surgery, but there is still so much I don’t know. Grateful for the progress we made today and finally getting permission for ice packs. 😂
Making my way down the halls. The matching pjs with the neck brace was not at all planned, but makes me so happy.
Hello Friends, the surgery date was complicated. We showed up on the Monday the 08/08 for surgery. The insurance approved the surgery for my brain, but not the neck. There was some paperwork that was missed so the neck fusion was still pending. They still had me go through all the motions like I was having surgery. I put a gown on and got all my vitals hooked up and met with the whole surgical team. Then the surgeon came in, still on the phone with insurance, and said we had to postpone it until Wednesday. It was frustrating to work myself up and finally feel ready and then have to step out of the surgery bubble that was created to go back to “not yet”.
Tuesday night felt much longer than Sunday night did. My fear was much closer to the surface. I had not felt fear like that before the last two brain surgeries.
Wednesday morning finally came. We were up at 3am our time in order to check into the hospital by 5:30am. This time it all moved quickly. It was finally time to go. After I said all the I love you’s and hugs. I laid on a hospital bed as I was wheeled down a hallway where I passed all of the surgical team lined up against both sides of the walls waiting for me. It was a very emotional moment.
Me with my amazing Neurosurgeon.
The surgery itself had no problems and was five hours long and ended three hours early. They kept me in a recovery room downstairs until I was not fully under the influence of the anesthesia, my siblings were disappointed to miss that part. When they moved me to the ICU I was wheeled into an elevator with a huge family holding balloons and flowers. The nurse asked if we could catch a ride up with them to the Neuro ICU floor. They all happily agreed and the nurse told them, “this girl just survived her third brain surgery and we’re taking her to her family.” The whole family started clapping and cheering and wishing me the best. It was a wonderful way to leave the recovery room and change floors.
My family was waiting for me in the ICU waiting room along with our former pastor from when I was 8 years old. He and his wife came to sit with my family while they waited. They brought pizza and cared for them during the surgery. They came by everyday even if it was just a few minutes to check on us. He met us at our Airbnb yesterday to help my mom and Isla move me out of the hospital. They were a beautiful testimony to just showing up and being a steady presence in the unknown. Just as God told us “weep with those whose weep and rejoice with those who rejoice”. When I got released from the hospital yesterday he helped us get resettled in the AirBnb.
Me, Pastor Fitz and Isla.
This next picture is the clearest x-ray image I have at the moment. It’s from yesterday morning at 3am. I get the stables out next week and will get more x-rays while I’m not fresh out of surgery on meds. The huge screws you see are stabilizing my neck.
X-Ray of Hardware. You can see the stables if you look closely and the plate. The lines are the neck brace. Getting an X-ray at 3:30 am right after brain/neck surgery was one of the scariest things.
It was mostly C1 that was unstable and could almost be fully rotated. So, moving down the X-ray the first screw is in my skull (cranial cervical junction) then C1, I had the bridge removed in the first surgery, but they could still screw it to the small remnant. C2, was screwed to C1 to stabilize it and my skull was screwed and strengthened. The top of the three long screws is into the CCJ (cervical cranial junction). The surgeon was also able to use the patch that was there from last time, so I didn’t need another skin graft and he didn’t need to go into my thigh. He did use synthetic bone for a bone graft and layered a collagen disc over the dura patch to help it heal and strengthen.
They gave me a new collar for my neck this morning cause the other one got a little messy. I’m going to get a second collar and extra pads and cushions since I have to make friends with this collar for three months. I thought it turned out funny that all my pjs I brought are greens and they coordinate.
The neck brace stays on for three months while the bone and screws set. 24/7 all the time no breaks. Sometimes I don’t notice it other times it’s all I can think about. Definitely going to take some time to get used to. It does help with pain. The second day in the hospital the physical therapist adjusted it up tighter to my face so my jawline was resting in it and it brought so much relief.
I stayed away from reading too much about the fusion because I didn’t wasn’t to freak out too much. I decided to just do it and push through it now. After seeing the X-rays I think that was a good decision for me. I was shocked. What they can do in spine and brain surgery is incredible. The neurosurgeon is truly remarkable.
I didn’t lose as much hair this time. The scar goes down longer, but it’s still looks like a clean cut.
Grateful for my family who has surrounded me with help. I wasn’t able to meet with the Physical Therapist or Occupational Therapist to learn how to shower, brush teeth, etc with the brace. So, we did our best last night when we got back to our Airbnb. Keeping my head in a neutral position is the hardest thing. My head feels very heavy and my neck is weak.
Me with Genna before she left to go back home. Loved having her with us.Isla helping me get in the car and putting my seatbelt on. She’s helping me with all those details.
It is critical at this time for me to not move my neck while the fusion is setting and healing. I didn’t know how to take a shower and I’m having to learn how to do all this “normal” stuff.
I did face plant last night and hit the ground really hard. I was able to get my hands in front of my face and I had my neck brace on, so I don’t think there was much damage to my neck. My hands and knees are bruised. I was next to my walker, but felt too weak and just fell over hard. It was terrifying.
My throat is also extremely sore and swollen from the breathing tubes. There’s a lot of sores in my throat and mouth. I’m struggling with the pain and fatigue. I’m not sleeping very well at night, my sleep seems to be better during the day. To be honest, this neck fusion is way more than I was expecting. I’m trusting God to walk with me through this, but the fall last night shook me. Please continue to pray for me as I navigate this long journey of healing.
God Bless,
Shae
“The Lord is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him.”
On a plane with Angel Flights to CO for the consultation.
Friends, thank you for praying with me over this appointment. My neurosurgeon is very kind and compassionate and understands what is happening in my body.
The long story short, I need another brain surgery. My neurosurgeon explained the MRI shows that directly under the titanium plate the tissue is collecting fluid like a blister. It’s about the size of a dime, but is causing Hydrolephusis (fluid on the brain) and irregular CSF flow (the fluid that travels around your brain and down your spine).
The tissue they harvested from my scalp is too fragile and has worn thin. The surgeon says the cause of the fragile tissue is probably due to Hypermobile Ehlers-Danlos Syndrome (hEDS). This diagnosis would be the reason my body is not healing and accepting the titanium plate. The tissue surrounding the plate is too fragile. The neurosurgeon said we are going to do the surgery “ASAP, the sooner the better” (meaning as soon as they can get me scheduled- so urgent, not emergency). They scheduled me for the soonest appointment on the 25th of this month.
So, in 15 days I will be having my third brain surgery.
The surgery will require removing the plate because at this point the titanium plate is hindering my progress. The scar tissue and muscles are already adapted to their new position (think like training flowers with a trellis) and we need to give them more room to sag. The dura patch is also going to be replaced. He still is figuring out the details of the best way to do it, but he wants to double patch it. Preferably with my own tissue from my scalp, possibly from my thigh, and maybe putting a seal over it. He is going to really think through how exactly he conducts this surgery because of the high risk and my body not healing as expected.
A few weeks ago my scar flared up with red bumps and scabs that are still there. He said my scar is too thin and fragile. It looks what he would expect it to be after two months of healing, not over a year and a half ago. The surgeon said my scar may be bigger and wider, but it should be stronger and healthier.
While the idea of a third brain surgery is overwhelming and I dread it, I’m glad that there is a clear mechanical problem and a solution. We’re hopeful that the surgery will help me get back on track.
Please continue to pray with me. I’ve been struggling and have known there was something wrong and suspected I would need another surgery, but I’m also still reeling.
Here are some specific ways you can pray:
Peace. I know the physical pain that comes and I’m fighting moments of panic. I know it’s going to be a lot to physically push through and my body is already in pain and weak. There’s a whole road of recovery ahead.
Guidance with all the paperwork and insurance processing that needs to happen in the next two weeks.
I have to do bloodwork, chest X-rays, etc before I’m cleared for surgery. That those would go without a hitch.
The planning and logistics of getting to Colorado and staying for 16 days. The surgeon wants me close to the hospital in case any complications arise because of the risk of healing.
Strength from God and endurance. My body is aching and my symptoms are growing. It’s very daunting and there’s going to be a lot to push through and I’m weary.
For my family-going through multiple brain surgeries gets harder, not easier and it is traumatic for all of us.
Support. This is a lot to pull together in two weeks. If you can support in anyway please reach out to me and I can send you my Venmo or Zelle.
I’m so grateful for all of your continued prayers and support as I’m climbing this next mountain, or never ending mountain. Even though we don’t always understand His ways and sometimes the prayers are not answered in the ways we want, He is still walking with us and holds us close in His love.
God Bless,
Shae
Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
Hello friends! I have a HUGE development and potentially a chance at a major reduction of symptoms and a huge improvement in my quality of life.
I’m sorry for the delayed update. For a while everything was just the same. There wasn’t anything new to report. I was in and out of the hospital a bit and on and off bed rest. I didn’t want to share all of the negatives. But, no big developments…until recently. Now I am totally off bed rest and working on clear goals.
This is going to be a story.
Bear with me, because of my storytelling skills and it gets a little dense…
Back in the summer of 2020, before my diagnosis of Chiari Malformation and then brain surgery, the first thing my primary care suspected was a condition called POTS.
From the Cleveland Clinic:
“Postural orthostatic tachycardia syndrome (POTS) is a condition that causes your heart to beat faster than normal when you transition from sitting or lying down to standing up. It’s a type of orthostatic intolerance.
Each word of “postural orthostatic tachycardia syndrome” has a meaning:
Postural: Related to the position of your body. Orthostatic: Related to standing upright. Tachycardia: A heart rate over 100 beats per minute. Syndrome: A group of symptoms that happen together.”
“When we stand, gravity pulls more blood into the lower half of the body. In a healthy person, to ensure that a sufficient amount of blood reaches the brain, the body activates several nervous system responses. One such response is releasing hormones that help tighten blood vessels and cause a modest increase in heart rate. This leads to better blood flow to the heart and brain. Once the brain is receiving enough blood and oxygen, these nervous system responses settle back to normal.
In people with POTS, for unclear reasons that may differ from person to person, the blood vessels don’t respond efficiently to the signal to tighten. As a result, the longer you are upright, the more blood pools in the lower half of your body. This leads to not enough blood returning to the brain, which can be felt as lightheadedness (faintness), brain fog and fatigue. As the nervous system continues to release epinephrine and norepinephrine to tighten the blood vessels, the heart rate increases further. This may cause shakiness, forceful or skipped heartbeats, and chest pain.”
I had many symptoms at the time, but it only addressed about 40-50% of my full symptom list. That was enough for my doctor to want me to be aware of it. Then I went off to school, got diagnosed with Chiari, moved back home and had surgery. So in my mind POTS was off the table and not something I thought about very often because many of the symptoms overlap with Chiari. I have so many commodities, it’s impossible to pinpoint each symptom to the cause.
Since the second brain surgery in January 2024, I’ve been hit hard with lots of escalating symptoms. For example, when I stand my vision goes completely black and I feel very faint and will have to sit down or lie on the floor. It’ll happen even if I’m lying down and just shift to a sitting position. I’ve not been able to eat much, been very sound and light sensitive, my skin and eyes have been really dry, my bp is low, I am short of breath when I am not doing anything, and lots of brain fog and fatigue.
A few weeks ago I met with a pain doctor (my request, I was so desperate for relief and thought they could help with medical massages or things like that) and it went as bad as it possibly could. He told me it was a psychological problem and that I probably didn’t need the first surgery to begin with. He focused on the notes from the initial neurosurgeon in Seattle who wouldn’t do the surgery and told me not to get a second opinion. He didn’t seem to be very familiar with Chiari, so he talked about anything but Chiari.
When this pain doctor first walked into the room, he made some “jokes” that just didn’t sit right with me. About how thick my file was for someone so young and how confusing it was…hahaha. He said he was confused, so I must be too. Then he said that my problem is because of the syrinx (a fluid collection, like a cyst) in my spine and the patch in the lining around my brain is probably leaking and that I probably need a blood patch. If that’s the cause my symptoms would be different and I would probably need another brain surgery. Now, for those with Chiari and who have had brain/neck surgery you don’t want to mess with your spine like that without good reason and clear evidence. I’ve become very cautious with doctors who just want to poke and prod and throw a diagnosis at the wall to see if it sticks or to save time.
He also did an assessment and said I meet the criteria for EDS (Elhers Danlos Syndrome), but that no insurance would pay for a diagnosis. I’m not sure what “pay for a diagnosis” even means. EDS is something that comes up a lot. There is definitely is a crossover with Chiari Malformation and some of my other comorbidities, but I don’t meet all the criteria. The evaluation the doctor was using was an outdated and incorrect method of testing. I am very hypermobile and fit those boxes, but you can be hypermobile without having EDS. He also saw my referral for genetic testing and told me that there was no way I would qualify for that and that if I wanted to buy a diagnosis then it would need to be out of pocket. I felt completely misunderstood. I am trying to get diagnoses removed and looking for clarity, not to add anything.
I am not going back to him.
That same week I met with a geneticist who he took my history, reviewed my symptoms and decided I qualified for genetic testing. He also initiated an EDS assessment, but didn’t think I met the criteria for EDS. He said there are other types of hyper mobility conditions.
There are four ways the genetics test can go:
Nothing comes back.
One or more gene mutations.
A gene is flagged as a mutation, but there’s not any information on it and it’s unclear if it’s symptom causing.
Nothing comes back now, but as science keeps progressing and evolving something could be flagged in the future. It’s more for information gathering at this point for the future.
There are still so many unknown genes and information surrounding genetic testing.
Later that week I was sharing with a friend, who has POTS, what happened. She told me about Western States University and their POTS clinic, she shared they had really helped her get her POTS symptoms under control. She suggested we call right then and see about getting an evaluation appointment. This was on a Friday and I got in on the following Tuesday. I was stunned at how quick I was able to schedule an appointment.
We were there for five hours for the assessment. It began with a very thorough medical history, a neurocognitive assessment, a neurological assessment, an EDS assessment, and then a NASA Lean Test. One of the issues I’ve been having is getting a formal POTS diagnosis, because there is no one my primary doctor knew of in our area doing a tilt table test, which is what it sounds like and is the common diagnostic tool. There is a doctor at OHSU, but her waitlist is seven years long. The NASA test is a version of the tilt table test that NASA developed because for some reason all astronauts have come back from space with POTS. The NASA test is over 50 years old.
For the NASA test I wore a heart monitor and laid in a dark room with no talking or noise for 15 mins so that we could get a baseline of my heart rate, 66 beats per minute (bpm). Then I leaned against the wall with just my shoulders touching and my feet about a foot from the wall. Over the next eight minutes, while I stood there quietly and without moving, my heart rate jumped up an additional 76 bpm to 142 bpm and continued climbing. I couldn’t feel my heart rate climb, I just felt a little nausea and some mild dizziness.
I was not feeling very “symptomatic” that day, it was actually my best day in weeks and I was worried the testing would not capture whatever was happening to me. That was not the case. 😂 They cut the test two minutes early and instructed me to lay on the table so my heart rate could come down to normal. Then I was led to a room to talk with Dr. Bill Moreau.
Dr. Moreau did something that no other doctor has done before. He told me he was going to tell my story back to me from what he understood and he wanted me to correct him where he was wrong. He began from when I first started getting symptoms at 15 and went all the way up to now. He had the full picture and understanding that no other doctor I have met with has been able to grasp and understand. I was floored by his insights into the different phenomena I’ve experienced with my body. He explained things to me that I had even stopped bringing up to doctors because they just kind of stare at me and move on.
The reason why he understands so much is because he is a researcher and Sports Medicine doctor who runs a Concussion Clinic. He was part of the NFL International Think Tank on Concussion Research that changed the way concussions are treated. He was also the Vice President of Sports Medicine at the United States Olympic Committee for ten years.
Brain surgery (surprisingly…) counts as a brain injury (mild traumatic brain injury)(mTBI) )along with the actual compression of my brain for who knows how long. It honestly seems like such a simple solution and kind of obvious to be treated as having a brain injury, but for some reason that hasn’t been the case. I have no idea why no one has approached my case through a brain injury lens, but it makes sense and it has opened a whole new world of recovery to me. It is a huge answer to prayer.
Dr. Moreau diagnosed me with Dysautonomia, POTS is a branch of that. Some people develop Dysautonomia after a brain injury. 1 in 5000 people have it. He explained that research on it is moving from the fringe of science towards the middle because so many people have developed it as a result of Long Covid. He told me it is not in my head and that the symptoms they are measuring are things like my heart rate that I have no control over. He said it is impossible for me to make my heart rate jump like that. I know that, but it felt really good to hear it from a doctor. He shared that he isn’t going to be going off of my feelings, he is going to be working with measurable criteria. He used a computer analogy. He said that my processor and memory are working, but the CPU is broken. They will help my brain rebuild the pathways between the two.
Dysautonomia is the missing piece that contains a reason for all of the random symptoms I have been experiencing that my doctors have been struggling to understand. This chart captures most of it, it is just missing sleep.
“Dysautonomia is a nervous system disorder that disrupts autonomic body processes. These are automatic functions like your blood pressure and heart rate. Having dysautonomia means these functions don’t work properly, causing disruptive symptoms. These symptoms are often manageable, but diagnosing and treating dysautonomia is sometimes difficult.”
He also asked me to be part of a POTS study to show the need for active interventions (PT) so your brain can heal. I agreed. The idea is to create new neural pathways and to teach my brain how to not freak out when I move.
So, I’ve started this protocol where I go twice a week. My calves are wrapped with 6″ ace bandages for compression and I wear a heart monitor. I work one on one with a resident who leads me through a series of exercises for 60-90 minutes. The first two weeks are supposed to be the hardest as your body adjusts and your brain is pushed.
The other big thing the doctor recommended is getting prism glasses. He could tell by looking at my eyes that they weren’t aligning correctly. He explained that if we were sitting side by side with our eyes closed we are both running at 100 horse power. When we open our eyes, I lose 40 horse power as my brain tries to compensate for the misalignment.
He referred me to Dr. Elizabeth Powers, a neuro ophthalmologist who specializes in helping people with brain injuries. I met with her and she again did a detailed history and a lot of testing. She explained that the Dysautonomia is causing my body to be stuck in fight or flight, so we have to work on calming my body down. I started wearing the prism glasses a few days ago. They are tinted a mango orange and I wear them over my contacts. Glasses with an orange tint block out blue light, which helps our bodies’ circadian rhythms get back on track easier and should help improve my sleep. I am still getting used to them because they are physically retraining my brain to see in a different way. I should notice a difference in 3-4 weeks.
Dr. Powers also recommended blue light therapy for my eyes. She said that it will help to reset the biochemistry of my brain. It helps to reduce daytime drowsiness, brain fog and should help me sleep better. I am scheduled to start that next month.
I’m also still working with an Occupational Therapist, who is helping me with things like time management. We made a binder where I can visually see the days and my activities with places for notes. We’re putting together a tool box too with things like grips for helping me hold my pens and various ear plugs to help with sound sensitivity.
I’m still doing physical therapy for balance and mobility with the physical therapist who I’ve been working with for almost three years now. She is amazing and has been a key part of my team on this journey. There is also speech therapy and strain counter-strain therapy to help with overall pain relief.
There are still many symptoms I’m struggling with and some days are better than others, but I’m learning to manage it. I’ve made a bag I carry with me filled with ice packs, ear plugs, electrolytes, vomit bags, ginger drops, and anything else that might help me when I’m out and about, going to appointments and trying to live my life.
The hope is this clinic will be able to help me. I should know in two to three months if my body is responding or not. If I am a “responder,” then I will continue with the Moreau Protocol for the next 1-2 years. There are no guarantees, but hope that I will eventually be able to drive again and go back to school.
Prayer points:
Endurance I’m feeling exhausted. This protocol is a lot of work and I’m tired. I’m in my second week now and some days my symptoms and head pressure are bad and I lay down with an ice cap on my head. I also go to the other therapies, so next week there are five appointments.
Response Please pray that my body responds to this therapy and that I can enter into the long term treatment phase.
Hope It’s still a lot to process and I feel excited, but also a little bit of some “tempered hope” as it was said to me. I’m trying really hard to keep going and to be hopeful but at the same time there’s a part of me that doesn’t want to hope too much. I don’t want to get my hopes up too high like I did for my first surgery. It’s mentally exhausting.
Trust Going back to looking at the way I ended up at the clinic and how fast I got in with them and then quickly in with the neuro optometrist and I’ve already received the glasses two weeks earlier than expected, it’s clear God has a hand in this.
My mom took me to see one of my favorite bands, Cain and they sang a new song called, “Wings.” I thought it was funny because when you look up POTS and Dysautonomia memes there’s sayings about being “allergic to gravity.” “Wings” is a new song about feeling heavy and having troubled times always trying to bring you down. Then about how we’re gonna fly with wings like eagles because “gravity” has no grip and then to soar to new horizons.
Thank you all so much for your continued prayers and support. This is a long journey and I am glad I am not doing it alone.
God bless,
Shae
This is my song for this next season.
"Wings" by Cain
“Heavy days, heavy heart, got that heavy burden Weighing on my shoulders now Troubled times, troubled mind, got that troubled feeling Always tries to bring me down
The world can wait 'cause I'm gonna wait on You I feel my spirit lifting when I do
I'm gonna fly with wings like eagles Soar high above it all Gonna rise to a new horizon Yeah, watch my worries fall Gravity ain't got no grip on me 'Cause I've got wings Oh, you know I've got wings, yeah Oh woah
I might be down here, feet stuck on the ground here But You keep my head above the clouds All of the problems, way too big to solve 'em Are so much smaller looking down 'Cause only You can change my point of view I feel my spirit lifting when You do Oh-oh I'm gonna fly with wings like eagles Soar high above it all Gonna rise to a new horizon Yeah, watch my worries fall Gravity ain't got no grip on me 'Cause I've got wings
Yeah, I've got wings Oh woah Mmm
Here we go
I feel the roof coming off of this place Coming off of this place I feel your spirit renewing my strength Yes, Lord I can hear heaven is calling my name Yeah, yeah
And I feel the roof coming off of this place, yeah And I'm gonna fly with wings like eagles Soar high above it all Gonna rise to a new horizon Yeah, watch my worries fall Hey Gravity ain't got no grip on me Oh yeah, oh yeah 'Cause I've got wings
We made it to Colorado, for the follow up with my neurosurgeon.
By the time we got here I already felt like I could sleep for a week. The flight was brutal with turbulence. Probably one of my worst experience with turbulence on a commercial flight. It was hard on my body and I’m feeling all the travel in my body. Then because I have the wheelchair service, they meet you while you are deboarding outside the plane.
The man pushing the wheelchair, when we landed in CO, was the fastest moving man I have ever had push my wheelchair. We were at the Denver airport and he said “this is the way fastest way to go”. Meaning going against the flow of tired and grumpy people and cutting corners. I got really bad motion sickness and almost taken out a few times by unsuspecting passengers with hockey and ski bags, and a few close calls with strollers. 🫢
I was so worried about losing my mom, was who following us with our luggage. I feel a lot of vulnerability in situations like this where I can’t turn my head around and have the reassurance she is still with me. It was a very stressful situation.
I had brought some stuff to work on in the plane, but could only read while everyone was boarding, (we sat in the very back) and during the few times the plane didn’t feel like a roller coaster.
We made it to the hotel and then settled in after we went to the only food open on Easter, which was a sports bar, full of older men, with a playlist of N’Sync, The Fray, and Jordan Sparks, and a lot of early 2000s. The playlist did not fit the vibe of the place and the people there. 😂😂
I was still feeling worked up from the stress of travel and the nerves and anticipation of tomorrow’s appointment, so I opened a scripture word search my friend sent me. It arrived the day before we left, God’s perfect timing, because I did not expect what she did.
My friend, wrote me a beautiful message on the inside of the cover and then covered the book with clever jokes written on sticky notes. It brought tears to my eyes and I laughed so hard my mom wanted to see why.
These are the thoughtful gifts and creativity that shows up when I need it, because God’s people follow His promptings. This was a reminder to me of how a small thing like a word search puzzle and jokes on sticky notes, can have such a heavy impact on someone. Thank you, Hannah!! 🤍🤍🤍
Today will be a day of rest and preparation for our appointment tomorrow. We have our list of questions and concerns we have to discuss with him and I will finally get the whole story of what went on inside my head. 🧠
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.
Hey everyone, This is Genna, Shae’s younger sister. She asked me to compile the updates my mom and I have posted on social media over the last few days and post them here.
January 14, 2024
The other GoFundMe had some problems, so my friends Amy and Heather have organized a new one. Here is the link. I am only 2 days away from 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.
January 15, 2024
Shae went into surgery around 1:40. Should be about 4-6 hours and then she’ll go directly to ICU. I’ll post updates as we get them.
This post comes to you from Shae’s personal PR team, mainly from Genna
January 15, 2024
Shae is out of surgery! The doc said it was super smooth and that he thinks a lot of good was done today. We are now just waiting for Shae to wake up and be moved to the ICU to begin her recovery.
This post was once again brought to you by Shae’s PR team, again meaning Genna
January 15, 2024
Hello everyone, it’s Shae. Genna is helping me with my social media and updates, while I’m in the hospital and the beginning of recovery. I’m a little loopy with meds and I’m sleeping a lot, which is good. So far, the pain management is working, but my pain is really high which is why I am awake.
I wanted to come on and say thank you. My family has been reading me all the comments and messages. I feel so loved and blessed by all of you. 🥰 Thank you for your love encouragement and support. I can feel the prayers of God’s people lifting me up.
The medical team asked me what music I would like to hear when I woke up from surgery and they were playing worship. The ICU is close to visitors right now and I am alone. I’m doing okay. My vision is blurry so it hard for me to much right now, but I wanted to asked if anyone has a favorite quiet worship song I can play tonight. Or a favorite scripture? Genna will help me reply to everyone tomorrow. I just need some encouragement right now. 💜
January 16, 2024
Recovery is underway! Shae is stable and cleared to leave the ICU today. Her oxygen levels dropped pretty low last night but they were able to get her back up to normal. Shae being able to leave the ICU today is such a blessing. For her last surgery, it was three days before she was cleared. They will be moving her to the Neuro floor for monitoring.
Steady updates brought to you by Shae’s PR representative
January 17, 2024
Shae Sobottke had a rough night. They thought she might recover faster because she’s so young, so they moved her after we left last night, but she lost a lot of CSF fluid during the surgery and was fragile when she went in. It’s taking a while longer for her to recover and she’s not drinking enough, so they added IV fluids and they moved her back to IV meds. After the meds, she immediately fell asleep. She will probably be there an extra day now. One of us will be able to stay with her tonight and advocate for her. Thank you all for your prayers and support. 💜 *Random hospital pic because I don’t have anything else and I’m too tired to figure it out.
This update is brought to you by Shae’s other PR representative
Right now Shae is resting after her rough night and is making plans for relaxing after she leaves the hospital. Recovery is moving forward but is a touch slow going after her lack of IV fluids last night. We are doing everything we can to keep her comfy and will give updates as needed.
This compilation of updates comes straight to you from Shae’s PR representative, the younger but not youngest sister
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.”
Weathering Chiari 