Road Trip Playlist [2]

You can find the first playlist post here. This is the list of songs that got me through the past month. So many I would just put on repeat when I faced some kind of discouragement and needed God's reminders.

I have no words to say

Don’t know what I should pray

God, I need You

God, I need You

Oh Lord, my faith is tired

And tears fill up my eyes

But I will trust You, I will trust You

Whatever comes my way

You have taught me to say

Amen, let Your kingdom come

Amen, let Your will be done

And through the rise and fall

You’re God above it all

Amen, we’re singing Amen

When I can barely stand

You strengthen me again

I will seek You, I will seek You

Though troubles may arise

My hands reach to the skies

I will praise You, I will praise You

Whatever comes my way

You have taught me to say

Amen, let Your kingdom come

Amen, let Your will be done

And through the rise and fall

You’re God above it all

Amen, we’re singing Amen

We’re singing Amen

The pathway is broken and the signs are unclear

And I don't know the reason why You brought me here

But just because You love me the way that You do

I'm gonna walk through the valley if You want me to

'Cause I'm not who I was when I took my first step

And I'm clinging to the promise You're not through with me yet

So if all of these trials bring me closer to You

Then I will go through the fire if You want me to

It may not be the way I would have chosen

When You lead me through a world that's not my home

But You never said it would be easy

You only said I'd never go alone

So when the whole world turns against me and I'm all by myself

And I can't hear You answer my cries for help

I'll remember the suffering Your love put You through

And I will go through the darkness if You want me to

I won't just survive

Oh, you will see me thrive

Can't write my story

I'm beyond the archetype

I won't just conform

No matter how you shake my core

'Cause my roots, they run deep, oh

Oh, ye of so little faith

Don't doubt it, don't doubt it

Victory is in my veins

I know it, I know it

And I will not negotiate

I'll fight it, I'll fight it

I will transform

When, when the fire's at my feet again

And the vultures all start circling

They're whispering, you're out of time

But still, I rise

This is no mistake, no accident

When you think the final nail is in, think again

Don't be surprised, I will still rise

I must stay conscious

Through the madness and chaos

So I call on my angels

They say

Oh, ye of so little faith

Don't doubt it, don't doubt it

Victory is in your veins

You know it, you know it

And you will not negotiate

Just fight it, just fight it

And be transformed

'Cause when, when the fire's at my feet again

And the vultures all start circling

They're whispering, you're out of time

But still, I rise

This is no mistake, no accident

When you think the final nail is in, think again

Don't be surprised, I will still rise

Find rest my soul

Put your hope in God

Put your hope, put your hope in God

When I thought I lost me

You knew where I left me

You reintroduced me to Your love

You picked up all my pieces

Put me back together

You are the defender of my heart

When I thought I lost me

You knew where I left me

You reintroduced me to Your love

You picked up all my pieces

Put me back together

You are the defender of my heart

When I thought I lost me

You knew where I left me

You reintroduced me to Your love

You picked up all my pieces

Put me back together

You are the defender of my heart

What will it be like when my pain is gone

And all the worries of this world just fade away?

What will it be like when You call my name

And that moment when I see You face to face?

I'm waiting my whole life to hear You say

Well done, well done

My good and faithful one

Welcome to the place where you belong

Well done, well done

My beloved child

You have run the race and now you're home

Welcome to the place where you belong

What will it be like when tears are washed away

And every broken thing will finally be made whole?

What will it be like when I come into Your glory

Standing in the presence of a love so beautiful?

I'm waiting my whole life for that day

I will live my life to hear You say

Well done, well done

My good and faithful one

Welcome to the place where you belong

Well done, well done

My beloved child

I can't say that everything's okay

'Cause I can see the tears you're crying

And I can't promise to take the pain away

But you can know I won't stop trying

I'll be the angel by your side

I will get you through the night

I'll be the strength you can't provide on your own

'Cause when you're down and out of time

And you think you've lost the fight

Let me be the angel

The angel by your side

I know it feels like you're running out of faith

'Cause it's so hard to keep believing

But if I can bring a smile back to your face

If for a moment, you'll forget all about it

I'll be the angel by your side

I will get you through the night

I'll be the strength you can't provide on your own

'Cause when you're down and out of time

And you think you've lost the fight

Let me be the angel

The angel by your side

'Cause this won't be the last time

You'll need a little hope

But I want to be the first to let you know

When life has cut too deep and left you hurting

The future you had hoped for is now burning

And the dreams you held so tight lost their meaning

And you don't if you'll ever find the healing

You're gonna make it

You're gonna make it

And the night can only last for so long

Whatever you're facing

If your heart is breaking

There's a promise for the ones who just hold on

Lift up your eyes and see

And the sun is rising

And the sun is rising

Sun is rising

And the sun is rising

Every high and every low you're gonna go through

You don't have to be afraid I am with you (I am with you)

In the moments you're so weak you feel like stopping

Let the hope you have light the road you're walking

You're gonna make it

You're gonna make it

The night can only last for so long

Whatever you're facing

If your heart is breaking

There's a promise for the ones who just hold on

Lift up your eyes and see

The sun is rising

And even when you can't imagine how

How you're ever gonna find your way out

Even when you're drabbling in your doubt

Just look beyond the clouds

And every step every breath you are there

Every tear every cry every prayer

In my hurt at my worst

When my world falls down

Not for a moment will You forsake me

Even in the dark

Even when it's hard

You will never leave me

After all

After all You are constant

After all You are only good

After all You are sovereign

Not for a moment will You forsake me

Staring down the face of fear

Gotta keep breathing

When the negative is all you hear

Gotta keep believing

'Cause in the dark there is a light

Your truth it keeps on burning bright

Brave enough to fight the fight

And shout the battle cry

You'll never stop me I'm a warrior

When I fall down I get stronger

Faith is my shield, His love is the armor

I'm a warrior (I'm a warrior)

I'm a warrior (I'm a warrior)

I'm a warrior (I'm a warrior)

Every scar on my skin

Is a beautiful reminder

Of a moment when I didn't give in

And I walked through fire

'Cause in the dark there is a light

Your truth it keeps on burning bright

Makes me brave to fight the fight

And shout the battle cry

You'll never stop me I'm a warrior

When I fall down I get stronger

Faith is my shield, His love is the armor

I will keep the hope alive

I will find the strength inside

I will keep the hope alive

I am a warrior, I will survive

I will keep the hope alive

I will find the strength inside

I will keep the hope alive

Warrior

You'll never stop me, I'm a warrior

When I fall down I get stronger

Any of these that's your favorite or a certain lyric speaking to you lately?

Breakthrough

 

Three weeks ago I came across this song. I knew it was God speaking to me that something big was about to happen and to continue to stay strong. Yes, the reality is I am still in pain, BUT there's been a huge breakthrough in a lot of my other health issues and a breakthrough in getting answers why I have such severe debilitating pain. There's still a lot more to be done and figured out, but we've come so far since my first diagnosis of EDS in April and the start of all the vascular testing in July.

• My MCAS (Mast Cell Activation Syndrome) has drastically improved thanks to my amazing allergist trying to a combination of medicines that has decreased my rashes and reactions.
• My cardiologist decided to have me try a medicine that is a patch and it has also drastically improved my POTS (Postural Orthostatic Tachycardia Syndrome) symptoms so my chest pain has been non existent and I haven't been as dizzy so I can stand for longer periods. It's an even bigger deal because I normally don't tolerate any medicines because of my MCAS. 
• I got approved to take part in the first exercise hypermobility EDS research study through a university with an 8 week Pilates course. I'm so excited to finally help in that way to hopefully lead to useful data and feedback.
• I now have a local doctor who is supportive and my advocate thanks to my other Dallas doctors.
• I'm glad I decided to have an eye and dental appointment because I was having some issues and we know now they are caused by EDS and we will need to continue to be watching them.
• Most of my appointments are complete for now (besides PT) so I'm just waiting for last EMG test on my arms to check for neuropathy and then I will be able to send in all my very thorough paperwork to my geneticist. The geneticist will write up a detailed report explaining with research how EDS has caused all my issues and if my insurance covers it, he will send a genetic testing kit.
• The previous post I explained about finally having proof of my Nutcracker and May-Thurner Syndrome thanks to the CT angiogram. I found out I was able to drop off my 5 previous scans to that radiologist so he can look over them and compare to the one he just did. Hopefully will find out any edits made to the report next week. 
• Everyone always asks what's next, now that we know, can we fix it? That is going to take some explaining that I've saved for the another post 🙂

I love looking back at old blog posts like this one and seeing the journey where I had so much opposition, but because of God and my faith, I was able to see through all of it and know that He is faithful and that a breakthrough was coming.

"Hey there fear

I've seen you here before 

You keeping coming back

And knocking at my door

For so long, so long

I've been trying to soar

With my hands tied up and my feet held to the floor

But I'm feeling' like a breakthrough is coming

I can see that a breakthrough is coming, coming for me

Cuz my heart, it was made to fly

Destiny can't be denied

I'm tired of waiting

I am overdue for a breakthrough"

Health Update 11/22/2019

Oh, hey there November. I'm currently laying in bed trying to distract myself while in a "flare up" as we are calling them just like when I went to the ER. Unfortunately this is #4 since September and no one has figured out what they are or how to prevent them. Earlier we had to decline plans with friends again for dinner and playdate for the girls, which is hard when it seems like an often occurrence the past year to have to request a rain check on any social outings.


I haven't really mentioned on the blog yet about a women's retreat I went to with my sister in April before my first rheumatologist appointment. On the last night of the retreat I will never forgot one of our group leaders telling me she had a prophecy for me.

"Hope deferred makes the heart sick, but a longing fulfilled is a tree of life" 

Proverbs 13:12 the verse above she gave me and explained even with a specific diagnosis, that I would still believe in God's healing. Today I actually had the realization, that oh, that prophecy was even more correct than I could ever imagine. Shortly after the retreat I would get my EDS diagnosis, a chronic illness that isn't one you can just take medicine for or has a cure. It's even more ironic that the song I've been listening to lately is "Even If" and I had never heard the testimony behind it until I finished writing this post and was looking for something to connect it all. What I wrote before listening to it just now was "My hope no longer was in healing because I know He can if that's His will, but I actually was given a fulfillment of my longing to have hope in Jesus. Through that he gave me a purpose to give others hope in the wait." 

When I last posted I had told everyone I was waiting for my venogram, had gone to the ER because I had new symptoms and unbearable abdominal pain, and just saw my mom's doctor who was willing to help me with pain relief until I had the procedure and more answers.

 

The venogram showed May-Thurner Syndrome with a 90% compressed left iliac vein and one large collateral vein. The interventional radiologist did not find any Pelvic Congestion Syndrome or Nutcracker Syndrome, which was a little confusing because my previous doppler ultrasound showed a different story. I actually had to be put out for the venogram (and the recovery was quite difficult), but after I was awake, the doctor told me what he found and said we would do a phone appointment in 2 weeks to decide what to do next and if I would want to do a stent of the iliac vein. Let's just say we still have not had that discussion yet.

My cardiologist wanted to see me immediately after he learned I had an ER visit. Thankfully he finally ordered a CT angiogram (what a vascular surgeon will need) that he expected my interventional radiologist to do along with the venogram. I just got the CT angiogram report last Friday at my follow up and it showed both left iliac vein and right iliac artery compressions along with a greater than 50% compressed left renal vein. I've known my recent "flare ups" have had to do with these because of limited blood flow to the organs. It makes me feel just a little bit better when I read and hear one of the leading vascular/transplant doctors in the country say that Nutcracker Syndrome or Loin Pain Haematuria Syndrome (LPHS) is “possibly the worst pain known in medicine.” 

I will go into more detail on how God was working through all of this in a future post, and it was so validating to finally have more pieces to the puzzle of what's wrong, but there still were a couple compressions not found in the CT angiogram that will take more opinions and therefore a longer wait.

"They say sometimes you win some

Sometimes you lose some

And right now, right now I'm losing bad

I've stood on this stage night after night

Reminding the broken it'll be alright

But right now, oh right now I just can't

It's easy to sing

When there's nothing to bring me down

But what will I say

When I'm held to the flame

Like I am right now

I know You're able and I know You can

Save through the fire with Your mighty hand

But even if You don't

My hope is You alone

They say it only takes a little faith

To move a mountain

Good thing

A little faith is all I have right now

But God, when You choose

To leave mountains unmovable

Give me the strength to be able to sing

It is well with my soul

I know You're able and I know You can

Save through the fire with Your mighty hand

But even if You don't

My hope is You alone

I know the sorrow, and I know the hurt

Would all go away if You'd just say the word

But even if You don't

My hope is You alone"