Weathering Chiari

Hello friends,

I know it has been a while since I have posted an update. It is still a challenge to keep up with messages and reaching out, being social, but I do read everything, and I appreciate and love all of you. It can still feel overwhelming, and I tend to need long breaks from my phone because of the headaches and nausea.

I went as a leader to the YoungLives camp recently. It was an amazing week! I did a whole lot better than I thought I would. I did have a weird “neurological episode” the last two days I was there, but I was able to get an IV infusion there with my usual meds and that helped. I came home and slept for a solid two days, but then was able to slowly start getting back to my normal routine. Which is huge progress!

The appointment with my doctor a few weeks back went well. I have been waiting for an appointment with a neurologist and have not gotten anywhere, so my doctor had the idea to refer me to a pediatric neurologist (because I am under 25) he has worked with who he thought might be a good fit. He thought that if she was not able to see me because I am out of her age range at 23, she would know who to refer me to instead.

So, it gets a little complicated but here is what happened. The neurologist I had at Legacy retired last year so I was referred to another one who also ended up leaving but he referred me to a different neurologist who I have been waiting to hear from. I got a letter in the mail this week from the second neurologist, who I already knew was leaving, telling me that he was leaving and that I need to find a new neurologist. I was confused about why I was receiving that letter if that is not who my referral went to in the first place.

My doctor called me this morning to tell me that the pediatric neurologist only sees patients under eighteen, but that the referral to the neurologist (the one I thought I was waiting on) was approved, but it was odd because it says in their system that they are waiting on me to call them.

We have been waiting on them to call us. We have called my doctor’s office several times to check on the referral and called the neurologist’s office, who told us they are not scheduling for two months and would call us.

So, we called the neurologist today and they said they are unable to schedule me because I do not have a referral. We were so confused because my doctors said the referral was approved and to call. The neurologist’s office said they could see that a referral from my doctor was placed on 7/16 at 12:45 pm but that immediately after at 12:50 pm someone in my doctor’s office wrote “do not schedule” on the referral. The neurologist’s office explained that that moved my file to a “canceled” area and so there is no current referral.

We immediately called my doctor’s office who said they could see that it was “accidentally switched” to “do not schedule” in their system. They said that my doctor needs to write me a new referral now. This is so beyond frustrating.

It is mind-boggling to think that I had brain surgery over a year ago and have only been able to see a neurologist twice. Who so causally misdiagnosed me with ALS and even then, was only able to talk about two symptoms with me.

I am lost in the healthcare system.

My doctor’s office scheduled an appointment for me with the doctor on Monday to talk through all of this and we are waiting for a manager to call about a “break in the system”.

In the meantime, I am still having headaches/migraines and a ton of neurological symptoms some of which are progressing and some new ones. The infusions have been helping, but that is not a long-term plan. My physical therapist thinks that because the infusions give me some relief, I can be a little more active and work on physical therapy exercises at home. Which helps to keep my pain and nausea down enough for me to be able to do things like physical therapy. A bright spot in all of this has been my physical therapist. She has been amazing, understanding, and caring. I am grateful for her.

Fatigue is still a big struggle for me, and I must constantly balance what I do and where I put my energy. It is hard not to feel the pressure to want to do everything and not miss out. There are so many people who seem to try to understand, but don’t really get it. They say I look well and do not get past that. There are also people who believe if I prayed more or was more something somehow that God would heal me. Amid all of this, I still know I am enough for God exactly the way I am. His love for me is not measured by my current disability. I am working on letting myself rest and knowing it is okay to take breaks. I also know that my condition is not a reflection of how much faith I have.

There are these moments where I feel this overwhelming stress and panic when I think about all the unanswered questions like, what is causing all these symptoms? Then dealing with my symptoms and all the appointments that need to happen and are not happening. Everything is a complete mess, and I am lost in the healthcare system.

Earlier today, I teared up listening to this part from We Are Messengers’ song, Close.

God, You know the the tears I’ve cried
And the times I couldn’t breathe
Oh, You never left my side
So I rest here at Your feet

I know You’re working all things for my good
In the way that only You could

Maybe the why just don’t matter
What if it’s not for me to know
Maybe the point is just to trust You
Find the faith to let it go

Cause sometimes falling feels like flying
It’s the only way I know
So I won’t hurry through the heartache
If it’s what it takes
To draw me close
To draw me close

Thank you all for hanging in there with me on this journey. Your prayers are impactful, and I am grateful for them. I feel God’s hand on me every day.

God bless you all,

Shae