Speak to My Heart

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

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