Songs

I am one of those people that God uses music to reach. Almost everyday I have Christian music playing in order to put my mind and keep it focused on Him instead of my trials. I now have started reading song lyrics. No music. Just Lyrics. I have found that it hits your soul in an entirely different way. you don't just get a tune stuck in your head but you read, absorb, and process the words that are said. It hits home and has shown me how amazing God really is. When you read it and it is truth, you feel connected to God in a different way. (Yes, all of you smarty pants this does not apply to every song but a large amount of Christian music)


Here is the lyrics of the words I just read that hit me like no other:


Theres a peace Ive come to know
Though my heart and flesh may fail
Theres an anchor for my soul
I can say, it is well

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagle's wings
Before my God, fall on my knees
And rise, I will rise

Theres a day thats drawing near
When this darkness breaks to light
And the shadows disappear
And my faith shall be my eyes

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagle's wings
Before my God, fall on my knees
And rise, I will rise

And I hear the voice of many angels sing
Worthy is the Lamb
And I hear the cry of every longing heart
Worthy is the Lamb

And I hear the voice of many angels sing
Worthy is the Lamb
And I hear the cry of every longing heart
Worthy is the Lamb
(You are worthy, You are worthy)
Worthy is the Lamb

I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagle's wings
Before my God, fall on my knees
And rise, I will rise, I will rise

PONDER PEOPLE PONDER. THIS WILL HAPPEN, IT IS NOT A FAIRYTALE; IT'S A GODTALE.

You are mine

Isaiah 43:1-2New International Version (NIV)


But now, this is what the Lord says—
he who created you, Jacob,
he who formed you, Israel:
“Do not fear, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze


I am having a difficult evening and then I came across this. Reading that God says I am His is blowing my mind. Then He continues with a list of promises. God is the only one that will always keep promises no matter what and as I sit here is awe of these promises I realize These are not tiny ones that could be forgotten but direct 100% without fail promises. God amazes me a lot. God summoned me by name and I am His The gravity of what that means is amazing.

Night time

Bed time is the worst part of my everyday life. It is a time where there is nothing to do but think; I am left processing how much I have been through as the fear creeps in, I realize that I am back in that valley with no end in sight again. It is a sobering thing to really realize you truly have no control over your body. It is not a control that we have ever had in the first place but we convince ourselves that we got this. Laying awake and thinking about how worn down I am and contemplating what my future looks like is a nightly thing for me.

In these vulnerable moments Satan comes in and makes me think things like: What if this antibody test comes back negative? Is that where the doctors give up and tell me it is all in my head?! Is there even another diagnosis I could have? I know I don't have the option of being cured except through the grace of God but is there any kind of treatment I can do? Am I going to have to exist on this earth living in a partially vegetative state forever? .....list goes on.

I have a fear that if this test comes back negative then my doctor will just say he doesn't know and give up on me like the countless doctors did before him saying all of it is in my mind. That is one of the most crushing blows to someone who is suffering and the only way to pick yourself up and walk forward is through God because I definitely will crumble if I hear that. Good thing God heals emotional pain and physical pain because that is a giant pill to swallow. I just have a lot on my mind right now with so many unknowns and mysteries it is hard to see beyond that. I try so hard not to think about my future because that is just too much. One day at a time, right here, right now I know God is pulling me through this and for that presence I am blessed. My "feeling like I have to prove everything" for anyone to believe me is a dark and lonely spot that only God can wash away.

I am waiting on all of my tests to come back and trying not to get anything stuck in my head as far as the results go. Sadly, I would like for it to be positive so I can start fighting in the correct way but I know life doesn't work how I want it to so I am mentally preparing myself for the negative test and then the "what to do now" conversation with my doctor. I should know the verdict by the 26th of the month. Please pray for my "feeling like I have to prove everything" attitude because it is exhausting. Pray for peace and comfort while I wait for the verdict and then the possible treatments that go along with it. Honestly, I am scared that nothing will be found and being beaten all the way back down to where I started. I would say my biggest prayer request is for peace and comfort as I put one foot in front of the other, remembering that God is still in control of my life.

Field Trips and realities

sometimes I forget that I'm sick. My dad took me on a field trip on Saturday (Some people are crazy and willing to take me in public even with my declining social skills.) we went to pere Marquette and stopped at a lookout, we get out of the car and went to walk and then my dad and I just look at each other and he was like oh you can't do the stairs can you? nope. So he went and took a few pics and then we spent the rest of the time driving through the park to look at the beautiful leaves. It was amazing to be out in God's creation vs. my bed! Yes, it makes me crash later but sometimes you have to choose to get out and do things even though a crash will follow. It is good for the soul.

I still just can't wrap my head around the fact that my life has changed this much and just walking up stairs leaves me ready to collapse. It was such a sudden change that I don't think I really absorbed it. Now I get frequent disappointing reality checks such as the one above. Prior to my seizure I did not even know that conditions of the nervous system exist in the first place and the toll they take on every part of your body; Everything is affected. It is a brutal and unpredictable disorder that there is no cure for. Treatments? yes but no cure. God is all powerful, I will never say there is no hope for POTS and an unknown diagnosis because there is always hope in Him. Without Him I don't know how people get through this. The peace and comfort that Jesus gives keeps me going. If I didn't have that my life would seem pointless and my sufferings would be for nothing.


Job 11:18
You will be secure, because there is hope; you will look about you and take your rest in safety.

Job 36:15
But those who suffer he delivers in their suffering; he speaks to them in their affliction.

Jeremiah 15:15
Lord, you understand; remember me and care for me. Avenge me on my persecutors. You are long-suffering—do not take me away; think of how I suffer reproach for your sake

Psalm 4:8
In peace I will lie down and sleep, for you alone, Lord, make me dwell in safety

Psalm 62:5
Yes, my soul, find rest in God; my hope comes from him.

Without all these promises and the best kind of support from Jesus. I would be very lost and hopeless. Hopeless is such a strong emotion to feel and it slowly eats at your heart and changes the person you were meant to be. In God there is an infinite amount of hope. More than you would ever imagine you just have to seek it.

faithful

I have never been good in things that have a waiting time.I have been very nervous and anxious and everything under the sun when I saw the POTS as the result of the tilt table. My heart had dropped thinking here we go again, he is going to tell me it is only that and my blood pressure drops just come along with it and we can't do anything about it. Obviously, I have been told a lot in my life that things are all in my head and I was terrified that was happening again. God never gives up on us and wants us to hand over this "control" that we think we have. I like control. God reminded me to just trust despite what you think is going to happen and the following message took my worry away and reminded me how important it is to give things over to God. This is the response from my doctor that I have been waiting for and freaking out over:

'We have not yet ruled out AAG. Lets see what the antibody shows.
It cannot just be POTS with low BP, despite the tilt results."

Basically, I do have POTS but I have something else as well that is making my BP drop. That is what we are testing for. So, yes I have 2 syndromes because just having one is not allowed. God gave me this peace despite my previous lack of trust and for that I am so thankful.

Confusion

Apparently my neurologist is out of the office till Monday but he still answers emails. I asked for my tilt table results and his response has me all kinds of confused and discouraged. "tilt confirms POTS" ummmmm I have like 5 papers from you that say it cant be due to my blood pressures. Like this: "I can not make a diagnosis of POTS in the setting of OH" (low bp) and this "The original Tilt test showed hypotension and tachycardia, not clearly POTS".......I sent him an email about all this and probably won't hear till tomorrow. This left me feeling so worn and defeated.

There is a possibility that he is not engaged in what he is doing and wasn't looking at my chart because he is out of the office. he doesn't have to be so focused. Please pray for me for peace until I hear back because as of now it is going to be a tough night. Pray for the right answer whatever that may be and acceptance on my part.

God's funny

God is trying to teach me to be patient and rely on Him; knowing He is in control. I have been waiting for my package from Athena and I got a call today saying that they will schedule me for next week in the hopes that the package arrives. I got so frustrated because this is for the antibody test and that's the most important thing. In my discouragement God is amazing and the package arrived right after all this and I got squeezed in for tomorrow instead. They draw blood at home and then we ship it and it takes from 3-5 weeks to get the answers.