Recovery Playlist

When I was looking for some new music, I stumbled upon these perfect songs with lyrics giving me comfort and confidence to a lot of my feelings about recovery so far. To be honest each time I would have a harder day or my body hurting in same way, I would instantly worry that my surgery failed or that I had a re-compression. I share this because I had to realize I was living in fear. When you've been through a lot of waiting and hoping, which for me were many specialists and natural practitioners, countless tests and bloodwork, constantly changing diet and exercise, multiple imaging, exploratory surgeries, pregnancies, physical therapy, hysterectomy, medicines that didn't work, a PICC line, and an iliac stent, you are familiar with that feeling of praying that this is it. So of course it is just a habit hard to break after so many times I had been devastated of not figuring out what's wrong or being healed. 

"My rock my shield my firm foundation

I know I will not be shaken

You remind me

Where my help comes from"

 

 

I have to also admit also seeing so many others that have the re-compressions and need further surgeries, or end up having new problems, it made me skeptical that I wouldn't experience as well. It's actually why I've wanted to hold off advocating too much to other warriors suffering just yet because I always want to be 100 % transparent. This led to having doubt that I am qualified to help others down this road. After I read some Bible verses and found the songs below, this is when my faith helped push away that fear. God gives me so many confirmations that He's still working. Even during those previous very dark times where I didn't know how I'd go on or try again, God would reassure me. I ended up having to come to peace and accept my suffering because I knew there had to be a reason. I'll never forget telling my husband that God laid it on my heart that the vascular compressions were what I knew was wrong with me and no matter how many doctors, reports, venograms, or CTA's said I was normal, I wasn't. 

 

 

I've said this before here, but the fact is with these vascular compressions, the most successful treatments are mixed on long term results and not many doctors continue to follow patients afterwards. Honestly how do most surgeons even consider a patient a success? They may have fixed one of their compressions (the one they knew about), but what happens if they have further debilitating symptoms and the patient needs another surgery (or more) on another compression or two? What if there is complications a year out, three years out that causes them to lose a kidney? Is it success because they had a year of relief before having to do that? Also, what about all the previous surgeries a patient had with exploratory surgeries, misdiagnosis and the wrong treatments that actually may affect a patient ever being "cured" or "fixed" by the time they have the correct surgery? I mean there's only so much a surgeon can do for someone, which is why advocacy and awareness matters so they don't get to that point.

 

 

Some patients are the lucky ones who've been completely healed with no further issues, but the majority seem to have complications or even more compressions to pop up after surgery. Every situation can be different, but I believe the main component is that these patients have a connective tissue disorder. Unfortunately most doctors don't screen for this prior to agreeing to surgery. And because of this the surgeon may not adapt how they do the surgery in taking extra precautions. I had no idea how fortunate I was to get my EDS diagnosis before learning about vascular compressions. I thought for so long I was unlucky for having a hysterectomy before finding out. 

So much is still not understood about EDS, these compressions, the surgery, and recovery. The fact is a lot of the Facebook groups and other patients are the ones leading the way on helping others decide on diagnosis and treatment. They provide far more knowledge, direction, tips, and support than a doctor alone could provide.  Not to mention I've read more studies and research journals from these groups than a lot of the doctors are aware of sadly. That's why I believe doctors who don't understand how the support groups on Facebook are beneficial are doing an injustice to their patients. There's no way I would've found my surgeon or gotten a life-saving surgery without them.

With my EDS and chronic illnesses I don't know what the future holds, but I do know no matter what, I'll lean on God to get through it. I'm not going to be living in fear. I'm going to be grateful for feeling well now and take every day as it comes. If that means scar tissue or endometriosis creates further problems down the road, my questions, my research, my putting pieces together will help shape and guide the doctors and surgeons for the patients that go after me. I actually went into college Pre-med, and although I knew I had the work ethic, I didn't think I was smart enough to make it. Before I went to Germany, I had two doctors encourage me to use Germany as an opportunity to further the impact I have on the medical community, they believed in me. I never in a million years would've ever guessed that I could make a difference as a patient.

 

"Someday soon I'll look back and see 

all the pain had a purpose 

your plan was perfect all along

this is the truth I'm standing on"

"Every wall will break

All the darkness shake

All the joy will be renewed

So every knee let's bow

Raise a victory shout

For the King will make things new

I will call

I will call upon You

Whatever I face"

"All the tears turn into memories

And the chains, they fall down at Your feet

Right here, is where

What was broken, now is beautiful

What was ashes, now a miracle

When a fragile heart finds healing hands

The places numbed by pain start to feel again

Where you fell apart becomes where you begin

When a fragile heart finds healing hands"

"I'll take this pain for you

I will pull you through

I'll be with you 'til the end

Through the fire and rain

I will be your strength

I'll be with you 'til the end"

"The one who does impossible

Is reaching out to make me whole

Reaching out to make me whole

The one who put death in its place

His life is flowing through my veins

His life is flowing through my veins

I believe in You

I believe in You

You're the God of miracles"

"Even when I cannot see, you are moving

Even when I cannot hear, You are singing over me

Even when I can't hold on, You won't let me go

You are faithful, You are faithful

Hallelujah

My soul will sing

Hallelujah

You are good to me

You are faithful, always faithful"

"I am convinced that Your promises will hold together

And I will dwell in the hope of Your love forever

I am convinced that Your promises will hold together

And I will dwell in Your love"

 

 

"When sorrows roar and troubles rage
You whisper peace
When I don't have the words to say
I won't lose hope
When storms won't break
You keep Your word

 
Oh, and Your promises will keep me safe

Oh, I don't wanna miss one word You speak
'Cause everything You say is life to me
Oh, I don't wanna miss one word You speak
So quiet my heart, I'm listening

 

Your ways are higher
You know just what I need
I trust You, Jesus
You see what I cannot see
Your ways are higher
You know just what I need
I trust You, Jesus
You see what I cannot see"

"My heart and flesh may fail
The earth below give way
But with my eyes, with my eyes I'll see the Lord
Lifted high on that day
Behold, the Lamb that was slain
And I'll know every tear was worth it all"

 

 (Make sure to listen to 3:20)

"There's no use in chasing nickels and dimes, nickels and dimes
Riches all around you, open your eyes, open your eyes
You can't buy the piece you're after so don't even try
 

'Cause you'll find...

Big magic in the mundane
The big picture in a small frame
Everything is sacred when you take time to notice
Big love happens in the small moments
Big love happens in the small moments
You can't do it all, so just do what you can
You can't do it all, so just do what you can

 

Feel the sun on your face (Feel the sun on your face)
Bare feet on the ground (Feet on the ground)
I know you'll see beautiful things if you look around, yeah
Just look around
And you'll find"

 

 

The other night my husband and I were talking and he opened up about how scary the last few months had been and that he was also struggling with the fear I wasn't fixed after this surgery. I felt like so much great perspective came out of that conversation because it made us bring up all the times God has continued to be faithful in our lives, and that if we hadn't gone through what we have, we wouldn't take time to focus and enjoy what's really important and never take for granted those small moments ^. Or how we are blessed with so many things we've prayed for, but the prayers that didn't go answered were so much better HIS way.

There's so much I can't wait to share with you all how God was working and still is. I realized it's difficult summarizing for someone my story without tearing up. It's not because I'm sad or brings back terrible memories, it's because I'm so in complete awe of how God has given me this testimony and continues to put people in my path (even without leaving my house). Since I've been back home I've been reminded even more that I needed to have experienced so many of these misdiagnoses, disbelief, surgeries, dead ends because how would I have empathy or know how to guide others going through the same thing? If the first doctor I went to healed me with the first very surgery or medicine, would I understand or fight to read every single journal or learn every piece of knowledge on EDS or compressions? I was feeling a little bit embarrassed when someone would ask a simple question about their own health path and I would respond with what I felt like had to be information overload. But then they would give me feedback how it was helpful to them or those that finally have relief, it has shown me over and over how my suffering was worth it