Chronic Illness

6/10/15 – When The World Gets a Glimpse

Yesterday, I got my long awaited blood pressure monitor. It has been on my list of “must have’s” for nearly a year. I finally bit the bullet, so to speak – and spent the money on one that I found on Amazon. I am loving the one I chose (you can see it here).

When I found out what my standing blood pressure was, we shared it on Facebook. A lot of “oh my’s”. Even a “go to the ER” comment. While I have been quite sad and despairing today, what we must realize: this isn’t something new.


This is what life looks like, when one has a form of Dysautonomia and standing significantly lowers their blood pressure. It’s called Neuro – Cardiogenic Syncope.

Wanna know how it feels?

It’s scary.

It’s life-impacting.

It’s annoying.

It’s frustrating.

It’s saddening.

It’s hard.

And, it’s not something I get used to.

Knowing all that…

But, it doesn’t limit what Christ can do through my life. Despite how hopeless my health can make me feel, that much I do know. My health, as broken as it may seem, cannot limit what Christ can do in my life. In fact, my broken health and current concerns may only speed up the work of Christ in the life of others through what I do and say.

While I know these things…

I wish I had people to just rally beside me more often – to check on me, to tell me it will be okay, to see if I need anything, to talk with me. I hate the silence. I hate how alone it makes me feel. I know how hard it is – to not know what to say… People just might not know what to say, but the silence is deafening…

Chronic Illness

NCS Flare at Christmas Time

I am having a Christmas – NCS style. It’s okay. What does a Christmas NCS style even mean? Some of you may be wondering. Erm…. Lots of rest. Lots of enjoying Christmas gifts I got early – spent in front of my new laptop watching my new season of NCIS (season 10). It’s a blessing to have gifts that help the bad days to not feel… so… incredibly… bad. As long as I lay down, I am fine. Unless the arm weakness is super severe, then it gets a bit more discontenting…

To those suffering, how are you getting enjoy your Christmas day?

Today, we celebrate the birth of my Savior Jesus. My way of celebrating may look differently than yours. I may be severely reminded of all the ways I don’t measure up, but I don’t have to be. Jesus came for me, and that’s all that matters. It doesn’t matter how messed up or immeasurable I am to others or this world. All that matters is: He came for me! <3 Today, I just want to keep that on my mind…. as I remember all He is when all I am not consumes my thoughts like a mile long slow-moving train.

You have searched me, Lord,
    and you know me.
You know when I sit and when I rise;
    you perceive my thoughts from afar. (Psalm 139:1-2)

Chronic Illness

New Diagnosis: NCS

I always knew something was wrong with me. With all my symptoms, inability to stand, and everything else, there was no way that any of it was “normal”. There is just no way. I began searching for answers after quite a while of debilitating weakness in August 2013. That was the moment that I seriously tried to find out what was going. “What is wrong with me?” This was the turning point. I was put through a MRI of my brain (to this day I am not so sure it was clear like the report may have said). There were many other tests conducted, and came back “normal”. August of this year, I tried again. “What is wrong with me?” I would soon find out, but would I be able to really grasp it?

Finally, the last test I had would shed some light on what is going on with me. Why does it feel like I am dying? Why can’t I really do anything? Yesterday, I was told that I have neurocardiogenic syncope (NCS). Now I am not exactly sure what that means, other than I have a broken autonomic nervous system and my blood pressure drops upon standing. I will find out more in detail what all it is, later. One step at a time, I will get this figured out. God, my ever-present help, is the One who will help me to sort things out.

Lately in my reading plan, the one new concept that is standing out to me is wisdom. Are we going to be children of God who seek His wisdom? If I hadn’t kept seeking wisdom and continuing to search to find out what is going on with my body, it would be impossible to know how to treat it. I would still be asking myself if I was really crazy. God has been my provider through it all! The journey has been rough, but He has been my strength. Jeremiah 33:3 was my verse that I wanted to focus on during the test (tilt table) I underwent last week. “Call to me and I will answer you, I will tell you great unsearchable things that you do not know”. God knows what He is doing. We just need to be about seeking Him and His wisdom! He is our great Physician.

Even when we are tempted to give up, we need to keep going. Keep holding to Jesus, knowing He will get us through it! When we can’t go any further, He will be the One to carry us (when we let Him). Staying strong spiritually is so important for staying strong in the other dimensions of our lives (emotionally, mentally, physically, etc).