Answered Prayers

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

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