Hope with Chiari Malformation

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

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