I didn't want to publish my first post without having other helpful posts available to read along with it. I know I've already kept quite a few waiting for updates the past few months so I thought it best to have the most popular inquiries shared all at the same time instead of delaying any topic someone was hoping would be discussed. In my experience when researching diagnosis and treatment for EDS and vascular compressions, once one question is answered, it always leads to even more questions. So my hopes in the way I'm sharing (and why I tried holding off on posting anything previously) is that I didn't want anyone to not have a full understanding and view of my surgery/recovery/and life now. Many of the subjects below aren't just a black or white, yes or no, or simple answer and explanation. If you don't know or haven't learned yet that illness can be complex, you are in the right place and I am praying all of these will give understanding and guidance.
I am officially one year post op! At the end of my last recovery recap post I wrote how I felt like I could finally say I am grateful for my suffering. I think the past 12 months of recovery I have learned to also appreciate the in-between. It by no means has been easy to have such a slow and long time to heal because I would battle a lot of doubt and fear, but I have seen the need for this part of my journey.
Week 6 (August)
The
biggest thing documenting-wise for this week was how my digestion started finally working correctly. That's when I noticed how I was actually
getting nutrients unlike before. I wasn't craving foods, I'd eat a few
bites and be completely content. My husband actually ended up having a
bum knee and on crutches the week after I got back so it was a huge
blessing in disguise I was feeling well enough to slowly start doing a
little more around the house and helping with the girls. Because of COVID-19, he was still able to
work from home until October 1st so our little family definitely enjoyed
that time together after being a part. Once I hit 6 weeks I
automatically thought I'd be good to go and no longer need to rest like I
had. Well, that was a little bit of a reality
check.
2 Months (September)
Each week I was feeling better and better and my appetite continued normalizing. Previously I'd eat a bigger meal than I had, but then be too full and end up skipping the next meal or two. I
definitely had more energy and felt like I could do a lot of things
after surgery, but would learn when I was overdoing it I'd be back in
bed. As time went on I was able to increase things I could do without
feeling it. I also was able to wear jeans!! This is actually a bigger deal than it sounds. Before surgery I could not handle anything tight on my abdomen for years. Last year especially I had to live in dresses and a pair of overalls because it was the only thing comfortable.
3 Months (October)
I made this update with a lot of details with symptom and pain improvement. I would say 3 months was pretty monumental. My scar flattened, but wasn't white yet. I was able to start taking walks here and there besides just doing things around the house. Also, my sweet warrior friend surprised me with this necklace and a card she translated and wrote herself in English (she lives in France). Chloe you have no idea what that meant to me 🖤
4 Months (November)
About this time is when I realized it didn't necessarily matter what I did, with this recovery I would just have harder days. Half way through this month I had a huge increase in pain and I couldn't get out of bed. I thought it was just another episode, but this one lasted way longer than the others and was by far the toughest part in my whole recovery. A blessing in disguise was that because of our hospital numbers for COVID-19 again, my husband's company sent him to work from home until at least February. So he was at home to take care of me and the girls, but also we were able to help control our exposure of getting it.
5 Months (December)
Three long weeks went by until I started feeling better and was palpating my abdomen like I usually do when I no longer felt the protrusion I had under my rib cage. I realized the extra pain I had felt must've been the fibrous tissue finally forming around the renal graft and it's like my body absorbed it. My upper abdomen actually felt better than ever and I noticed even if I overdid it, it was no longer sore like it previously had been. A week later the pain moved down along with the major fatigue returning so that confirmed for me I was now internally healing the iliac vein graft. Shortly before this my surgeon sent me a few pictures from my surgery and what it looked like when he placed my grafts. Seeing those definitely gave me an understanding why everything takes so long to heal.
6 Months (January)
First road trip since getting back from Germany to meet my niece. I finally felt like I was on the upswing of the difficult healing phase on New Year's Eve. Relief is an understatement to say that I was now in the clear for bowel obstructions or hernias. I was actually expecting a hernia since most EDSers I know that
have even a fraction of the length of my scar get one. I would say props to my
surgeon for sure :) I also did not have keloid scarring. I had one small
place that looked like it might, but flattened as well. I realized at this time my scar probably wouldn't turn white until I was closer to a year so I made sure that I continued listening to my body on what it needed after so long ignoring many signals and warnings. My surgeon told me EDSers feel things that most people do not and not to look at it as just a bad thing.
7 Months (February)
Started gradually doing a little bit of cycling at home and I had a stress test with my cardiologist, which actually felt good. I paid for it the next day, but I thought it was a good sign it was my legs giving out rather than my heart that usually was the case before surgery. I had my birthday this month and was feeling so incredibly grateful. Grateful to celebrate another birthday and grateful to be feeling better recovery wise.
8 Months (March)
Finally got to meet these amazing warrior friends in person! This is Staci and she and her daughter Tara created the SMAS nonprofit. I tear up every time I think about how she supported me and gave me so much peace and reassurance before and while I was in Germany. We met for lunch when I had to take my oldest to a doctor appointment. Tara ended up bringing her daughter who is the same age and the girls hitting it off made my heart so incredibly happy. They even brought two stuffed unicorns for both my daughters. I can't wait until we can get together again!
9 Months (April)
I could enjoy a mimosa without a reaction! I started noticing lots of things that had been triggers for me prior to surgery, would no longer cause me any issues. My friend had shared this also happened to her after her surgery in Germany. Another interesting thing that can happen when blood flow is fixed and brings inflammation down.
10 Months (May)
Not only did I venture to the store for the first time (we usually get groceries delivered), I took my girls with me, which was a huge milestone to feel like I could tackle that on my own. It went well!
11 Months (June)
Made the 6 hour car trip to Houston for my imaging and check up. It would go even better than we expected :) All clear to exercise because everything was healed and blood flow, grafts, and organs all looked great. We'd even learn that my severe chronic venous insufficiency in my legs had improved. Improved so much that there was no evidence that I ever had it. I had multiple doctors see and diagnose this before surgery and will never forget the first tech asking if I had diabetes because she was so concerned. I think it's more proof of what happens when you address what's actually causing the blood flow problems.
12 Months (July)
We took a family vacation to visit the in-laws and celebrate my surgiversary. This was the first time my husband got to take actual days off for vacation because he usually had to use all his time off for my appointments or surgeries. A trip and memories we'll never forget.
I decided I wanted to share about my word I feel like describes this season. Revived. God revived me, physically, mentally, spiritually. On our family vacation to Florida last month I was driving over the bridge to the beach with a coffee in my hand blasting music when the song above came on. The tears wouldn't stop falling. A song I listened to when things looked so dark and now it was a year later after my successful surgery where I was able to go on vacation, able to drive, able to belt it out in the car, able to drink a coffee. I was overwhelmed with emotions and gratitude (and still am) thinking back how God would always renew my strength. No doubt He is my revival.
"I will run and not grow weary I will walk, I will not faint I will soar on wings like eagles Find my rest in your everlasting name
You are my revival Jesus on you I wait And I'll lean on your promise You will renew my strength
I will run and not grow weary I will walk, I will not faint I will soar on wings like eagles Find my rest in your everlasting name
You are my revival Jesus on you I wait And I'll lean on your promise You will renew my strength
This is what I sent to my surgeon on July 14th 🖤 I
wrote here that I heard vascular compression surgery takes 3 months to
get out and about, 6 months to feel like surgery was worth it, and 12
months to feel better than you ever have. I am now over a year out and it was accurate for me. My scar has turned white and I do finally feel recovered, but it did take the full year (and the 1st 6 months was brutal).
Before I had all restrictions lifted, my
doctors and I wanted to make sure with testing and imaging that not only did everything heal completely and correctly, but that all my organs and blood flow along with the grafts looked good. I'm happy to report we did get that amazing news from multiple specialists (along with even some unexpected additional benefits/improvements).
I remember back in
July 2019 at my cardiologist's appointment the intern asked me what my
quality of life was. That was actually the first time I was ever asked
that at an appointment. I remember trying to think about it and at first
said "well, it's ok because I have two daughters and they keep me
going." Then the intern started asking more direct questions, are you
able to stand and do chores and my sister-in-law who was with me said
"Marlee, be honest." It wrecked me. I realized my quality of life was
poor. I think the next appointment after that they asked me for a number
and I said 3, which at the time looking back know that wasn't even
accurate.
I had a friend ask me recently the same question of what it
was right before surgery. I couldn't believe it came out of my mouth, but it
was a 0. She then asked me what my quality of life is now and I shared a 6 or 7. She said
"that's huge!" And that she's read that a 7 is actually an EDSer's 10. I then
felt the need to explain my life is still different with fatigue and
all that I can do and my comorbidities, but she understood this because
she knows EDS. I had another friend six months ago ask me if I'll always continue
needing my cane. At that time I did tell her that it could improve once I
started exercising and physical therapy back
up, but after thinking about it more, I realized I hadn't really been
honest with her or myself.
I think a part of me still fought that it's ok to
need adaptive tools and that every day can look different for me. My PT told me one day I may need a wheelchair and that
another day I might not need anything, but to listen to my body and not feel guilty or that I'm failing if I do. It
doesn't mean my surgery didn't work, it means I'm finally being kind to
my body after years of needing assistance, but not knowing why or that
it was real. A big part of the reason it's hard and scary to use something like
a wheelchair is that some people assume you are faking illness if you
can stand or walk. Honestly I didn't realize people used wheelchairs even if they could move their legs, they are called ambulatory wheelchair users. I learned if I didn't use a wheelchair I
wouldn't be able to be out of bed or the house, or actually function when we got
home (or the rest of the week). The freedom that mobility aids give, most EDSers once they actually use one, are mad they didn't start using one sooner.
I have written and rewritten this whole post a million times, especially once I get to this part. I think it would just help to share this quote from Jennifer Brea-
I felt that it would be a missed opportunity if I didn't explain how I did win one battle, but I still have an enemy I'm up against. Now that my doctors and I know that surgery on my multiple vascular
compressions
was successful, what is the latest on my health?
I have always made
sure to include even though my operation was needed
and gave me quality of life back, I still have Hypermobile Ehlers-Danlos
Syndrome, which caused my compressions. I have
started describing EDS as a whack-a-mole. With EDS because it's
multi-system, patients are usually affected by a lot of different
comorbidities. We have to decide what is at the top of our to-do list
causing the most severe pain/symptoms at the moment or interfering
with functioning (or what could cause irreversible
damage if let unaddressed or untreated). The problem with my list is that a lot of the diagnoses I need to look into, they are rare as well and can be difficult to find the right specialist knowledgeable enough to diagnose or even willing to treat you just like the compressions. I did receive 2 new diagnoses recently, but would like to get the other ones figured out before sharing all the details.
I planned to start having uninterrupted time to sit down to write posts, answer comments, research more about other diagnoses, and schedule those new doctor appointments once my
oldest started kindergarten. The last six months I wanted to really soak
up as much time with my family and make as many memories as possible,
which we definitely did 🖤 As life goes with throwing curve balls,
because of the current situation with COVID where we live, I am
actually going to be teaching both girls at home instead for now.
There's no
way I could be doing it
if I hadn't corrected my MALS, SMAS, NCS, MTS, and PCS last year. I
have to admit that I am really excited to use my teaching degree
again and pour into the girls a little longer after feeling like we
missed out on a lot of those things when I was so sick.
Something that I wanted to make sure I shared in this post is that I would not realize seeing all the doctors I did when I was in a bad way prior to surgery would actually work in my favor. There
were a lot who didn't believe I had the compressions or that any of my
symptoms or pain was that severe. This past year when I saw some of those doctors again, they couldn't believe the difference in me and wanted to
know all the details about my surgery and my story. I would've never guessed at the time that them witnessing how sick I was and how I'm doing now would help spread advocacy and awareness. I think that is
good lesson that you just never know the why in our suffering.
Also my closed doors. Oh there.were.so.many. I couldn't
understand at the time why I had to experience them, I was beyond
devastated again and again. Not only have I been shown exactly why those
surgeries or surgeons weren't the right option for me, but it opened my eyes that God was protecting me. Although I would meet some
not great doctors along my path trying to get diagnosis and surgery, I
would also be introduced to doctors that I'm now so fortunate to have on
my team. Even if they may not have much knowledge on the
compressions or EDS, they are in my corner and help me
in any way I need them. I even have
appointments I actually look forward to, which still blows me away. I know I can seem critical about the medical community at times, but the fact is there are doctors out there who want to help patients. I don't want to just complain or point fingers, I want to educate, give options, and create change and wow has God been making a way to do that. This past year what I'm seeing is that those closed doors for me are
leading to open doors for others.
You may have noticed a theme in all the songs in this post. I couldn't be more grateful to be living again and never take it for granted this gift because I know so many would give anything for that and dream about it. I can't begin to tell you how surreal it is to be doing so many things I wasn't sure I'd ever do again like going to the beach and swimming in the ocean with my husband and daughters. For those warriors (or parents of warriors) still searching for answers or direction, I know you are trying to come back to life. There is hope. Please don't give up. What if the miracle's a moment away?
I asked those that reached out the last few months what they would
like to see on my surgiversary post. The consensus was everything
haha. So that's what I'm going to try to do :) I have a 4 part series
that I will be sharing soon. My readers have probably learned I like
things
organized and arranged in an efficient way. When people message me with
questions or asking me to share about my experience, I've learned
it's so much
easier on me without having to try to remember everything
and helpful for them (so they can also refer back to instead of
rereading through messages) if I can point them to just one place on my
blog to find everything. What should you expect for the Surgiversary Series? I wanted to publish a few other posts that people have specifically requested first, but here's a preview of the topics: More explanation on how I'm doing with symptom improvement, my full story that led to Germany, additional tips or things to know about diagnosis and surgery, and what is in the works for multiple vascular compression advocacy/awareness. Stay tuned.
Before I get into the actual list, I would like to say that I have friends who've finally gotten pain and symptom relief with different surgeons than I did and my heart is so happy for them and vise versa. I want support and community to be the number one thing that all of us compression warriors influence, especially during recovery. I don't think anyone has to get the same surgery that I had or that it's the only option. For those people that are more complicated or have been only met with disbelief and feel like there's nowhere to turn, I want you to know I was in that same place. My EDS doctor and I have put together a team of specialists to create a path for those who aren't getting the help they need with multiple compressions, but could never make it to or afford to go Germany.
"Your hardest times often lead to the greatest moments of your life."
-Roy Bennett
I have shared a few times how tough this surgery and recovery is, but there's a reason. I hoped with my operation that I would just have the chance to be around for my husband and daughters a little longer, I never foresaw that I'd have the improvement or progress I've had. When I was discouraged anytime those first 6 months, I was reminded of the miracle God did for His
people when he parted the sea. Even after providing over and over again,
the people in the desert still lost their hope and faith. God made a
way for me to get to Germany, I couldn't give up on the rest of what He has
in store for me because it gets difficult again. I would say that
during this recovery, you will also be healing more than just your body. Even though I speak on the recovery subject here and here, I wanted to create a list all in place for whoever might be going through it right now.
1. I'm going to repeat this again because I think it's a good timeline and was correct for me - It took 3 months to start getting out and
about, 6
months to feel like the surgery was worth it, and 12
months before I felt better than ever. Other people are going to think you should be healed immediately
(probably even some doctors), but this isn't like any other surgery
recovery. Even after all the different surgeries I've had, 6 weeks was
always about the time it took for me to feel recovered, but for this, even when I hit 6 months, I knew that it'd be at least a year.
2. I think the most difficult thing mentally for this recovery is that if I had a good day, it made me think it would only be better from here on out. Then when that didn't happen (if you are like me and have tried a million other things or surgeries that ended up not working), I would instantly think something was wrong or this was now my new normal. Better from here on out did happen eventually, just not until the fibrous tissue formed around my grafts at 6 months. I was actually told that it takes 266 days for the internal sutures to dissolve. This brings me to my next on the list:
3. Everyone is different healing wise. There are so many factors that can
come into play - age, previous surgeries, EDS and other comorbidities,
how bad or long someone had the compressions, which compressions, diet, resting, someone's body adapting to the grafts. For me my renal vein graft bothered me so much more than my
iliac vein and digestion wise I felt like I had it easier than some. But
man oh man, energy, or lack thereof I should say. That was usually my cue something internally was
going on. A little friendly reminder is that you aren't completely
healed until your scar is white if you want more of a visual how you know.
4. Nothing is too small for progress, remember that. Even a more painful day meant progress.
Something I had to learn, sometimes the days I was most fatigued or
hurting extra randomly (or digestion was being weird again or non
existent), a week or two later I felt more difference and would go "oh, that's
what was happening." What I'm here to say is to not
lose sight of the big picture during recovery.
5. Let go of expectations - healing, energy,
productivity, posting or responding on social media, returning calls or texts. I majorly struggled with the guilt, but I knew
those that loved me truly understood and I would eventually get back to them when I was feeling well or when my hands weren't full with my girls.
6. It's ok to ask for help. Help when you are discouraged, help with cleaning, help with cooking, help with groceries. Recovery meant we only got groceries delivered (and meals delivered a little too often when I was having a hard time) because we knew how important rest was when I felt that way. I would suggest making a list for family or friends who've offered or asked if you need anything. Some ideas might be taking out the trash, bringing groceries in or putting away, lifting or moving things that are heavy, picking your children up (this one was so hard not to do personally), or even laundry I had to be more careful. I'm going to let you in on a secret. My house was a disaster. I'm a little shocked I am admitting that because it is embarrassing and was overwhelming, but you know what? There were more important things like making sure I eventually would be able to do all the above things again one day, but not if I didn't let my body heal first.
7. If you overdo it or did do something you shouldn't have, and you feel it or start to worry something is wrong, it's totally ok to get peace of mind that blood flow, grafts, (or transplanted kidney if you had AT) are still good by getting labs or imaging done (and sending to Sandmann if that's who did your surgery). *We are very lucky in that we can contact our caring surgeon by email about a problem because he is responsive to help give you peace or direction if he thinks something is concerning.
8. Something I always want to mention to others to be aware of because if you have EDS and compressions, there's a good chance POTS or MCAS will follow if they haven't already showed signs prior. Surgery is very traumatic on the body, especially if you have EDS, but it can actually cause other things to amp up afterwards. I realized since I was already aware of those diagnoses of mine and their symptoms (and how to keep them under control), that I could separate them from my healing symptoms and pain.
9. To go along with this, I would also locally (before surgery if you are able to) find a doctor who might be willing to give you fluids and discuss possible weight loss right after surgery, how you will combat that. If a PICC line might be needed and TPN to supplement (depending on your pre-surgery weight), but to keep your strength up because some people will have vomiting or dumping syndrome. *If you are going to Germany, I would try to find a doctor who's willing to prescribe you pain medicine for traveling back after your surgery because new regulations unfortunately prevent Sandmann doing this anymore for his out of country patients (in case you had already been on pain medicine for the compressions because a lot of us are).
10. When you are in it, the hard times feel like it will never pass - Start journaling and documenting right now, anything and everything. That
way you can notice any progress when you are in those stuck phases of
healing and getting discouraged. A huge issue with these compressions is
so many doctors don't understand how many things are affected by lack
of blood flow so some things you had no idea would get better, may. Heart palpitations to migraines were just a couple improvements I hadn't expected, but so very glad they did 🙏
11. Pain control matters. You can't heal or sleep if you are in too much pain and like I've said, it's normal the first 6 months. Do not feel guilty for using pain meds [I am not a doctor and that is not medical advice]. I battled a lot of shame actually sharing about that because of the terrible stigma attached, but I made it to surgery because I had them (and finally a doctor who understood and believed my pain to even prescribe them that I know some aren't lucky enough to have). If medicines don't seem to work on the pain, it may be worth it to get a genetic blood test done to see if you over metabolize or don't metabolize certain ones as well. This can even help navigate what might be your best bet to try or proof to your surgeon you aren't exaggerating.
12. Diet and supplements also matter. As much as the surgery can correct problems, recovery is almost rivaled in importance. You really want to try to keep the inflammation down and give your body the best chance. I did a lot of things before surgery that I felt helped my recovery and feeling well now. If you can, even doing blood work to see if there is any deficiencies (some can even increase pain you experience during recovery). I do know a couple warriors that did find out they were low in something and it made a difference supplementing or adding something in. If you have questions or would like any guidance, I'd be happy to share more or you can contact my cousin who is a Nutritional Therapy Practitioner (FNTP) and has learned the same things through her own journey with chronic illness (you can check out her Instagram that has a ton of great tips as well).
13. Come up with what inspires or focuses you in those down times, or what does the opposite, and set boundaries. I know it can depend on the person, but does social media make you feel worse when you are in bed and see all the people out doing all the things? Mental overdoing is just as bad as physically overdoing it, I had to learn the hard way. Do you have a music playlist? If not, here's mine. Also distraction is very needed. Allow yourself to binge watch shows or whatever can do the trick (when I'm in pain, reading is out of the question). And don't ever underestimate the value of a hot Epsom salt bath (my friend Emma always shares this). The times nothing is cutting it, this always does for at least the time I'm in it. Also find the positions that you can alternate and switch into to give a little relief in the meantime. For me it can be Happy Baby, Child's Pose, or Reclined Goddess Pose and multiple pillows can help find something comfortable.
14. The most valuable thing to remember during compression surgery recovery is that you have support and community if you need it. Sometimes it's the biggest comfort just to know someone relates to exactly what you are experiencing and that you aren't alone (and to give you that little extra encouragement when we need it the most). Here's the Facebook Support Groups I'm in and the Scholbach/Sandmann Support Group if you went to Germany. I love that the SMAS Non-profit also sends cards in remembrance of Lisa Brown if you had surgery or would like one on your birthday. And last...
Give yourself grace. You did it. You made it to and through surgery and I'm so proud of you because just making it to this point is HUGE. Those of us that have finally got a glimpse of the light at the end of the tunnel are here to show you that you will too.
"Saw the end of the tunnel Didn't think that I could make it out Got so used to the dark I was scared of what the light would do now
I couldn't piece me back together With some bandaids and a roll of tape Sittin 'round wishing it all away Believing there was something better, better Just took a leap of faith
Now I'm healing Now I'm healing I'm here unashamed I found strength through the pain What was broken is standing again And I'm healing Now I'm healing
Gave myself some grace And my soul began to feel the change I let love flood my heart Like the Sun upon a tear-stained face
I'm slowly learning to be grateful Found some purpose in all the hurt Now I'm rediscovering what I'm worth Just takes one step to turn the tables But I had to take it first"
Why Chronic Pain Overcomer? My sister helped me come up with the name
when I was enduring the worst pain of my life from multiple vascular
compressions. Even now, although that pain has improved this past year
from surgery in Germany, I still have EDS and will battle chronic pain
the rest of my life. But let me tell you I have so much hope. We all experience pain in our life, it might be
suffering with our health, it might be other hardships, or even great loss. I chose
the verse John 1:5 to represent Chronic Pain Overcomer because there's
no way I would still be here or continue to overcome without my faith. For my first post back I thought it would be important to share my goal
for this online space.
We all will have stories of suffering, it's just what we do with that suffering. I
want to be the reason someone decides not to give up. I want to give knowledge and tools to advocate for oneself to get answers. I want to change how illness is viewed and understood. I want warriors to not only feel less alone, but that they have a safe place. I want people who aren't impacted by sickness to gain empathy and new perspective towards those who do experience. I want to educate family and friends in case they share my story or about one of my syndromes to someone who has unexplained symptoms and it turns into them getting belief and treatment. I want to share songs that inspire others so that listening to one on repeat could be the only thing that gets them through another day or night.
"I've been staring at the world, waiting I've been looking for a change lately All the trouble and all the pain we're facing Someone gotta be the hope and someone gotta be the light
Too much light to be living in the dark Where are we going? We ain't getting very far Why waste time? We only got one life"
"I will carry you
Through your darkest night
When you're terrified
I will carry you
When the waters rise
When your hope runs dry
I will carry you"
"Let me tell you, all my friends About this joy I'm living in Let me take the mic, go on and testify How I was dead and then I came to life No more living in the dark of night Now everything's alright"
"He makes a way where there ain't no way Rises up from an empty grave Ain't no sinner that he can't save Let me tell you 'bout my Jesus His love is strong and his grace is free And the good news is I know that he Can do for you what he's done for me Let me tell you 'bout my Jesus And let my Jesus change your life"
"Sometimes it's hard to breathe All these thoughts they shout at me Try to bring me to my knees And it's overwhelming Darkness echos all around Feels like everything is crashing down Still I know where my hope is found And it's only You
Ooooh You say You're working Everything for my good, and Ooooh I believe every word
'Cause even in the madness There is peace Drowning out the voices all around me Through all of this chaos You are writing a symphony A symphony"
"I wouldn't say I would've chosen it That time I hit the bottom and it hurt a little bit Funny how being down can make you look up But now I'm better for it
All I could see in the moment was My heart and how it felt ripped open, I'll admit I found You down low in the brokenness And now I'm better for it
I count it all as joy even when I'm in the flame 'Cause I know You always
Gimme, gimme, gimme grace when I need it Hindsight 20/20, now I see that You let me be where I've been So I can be all that I am Gimme, gimme, gimme faith to believe that When it hurts, there's a real good reason You let me be where I've been So I can be all that I am Better for it
Yeah, I used to think pain was a consequence But now I kinda think it might be the perfect gift You use to get me straight to You And I'm better for it
I count it all as joy even when I'm in the flame 'Cause I know You always
Gimme, gimme, gimme grace when I need it Hindsight 20/20, now I see that You let me be where I've been So I can be all that I am Gimme, gimme, gimme faith to believe that When it hurts, there's a real good reason You let me be where I've been So I can be all that I am Better for it"
"Even in the darkness, You will be my light Even when I'm hopeless, You will be my guide I will not be shaken, I will not be moved Even in the chaos, I know that You're good"
"Cause I've seen too much Now I can't deny He's come through every single time From the beginning until the end He did, He will, He can
Did He move every mountain? Did He part every sea? Yes, He did So yes, He can Did He defeat the darkness? Did He deliver me? Yes, He did So yes, He can"
"Everybody wants to tell me what I need to do The only one I need to be listening to is you So I'ma take your hand and I'ma let you lead me through Oh-oh-oh
No matter what the pressure, pressure You will always be the answer, answer Only you know how to steady me Ready my heart for everything that's coming my way Help me trust that you're ahead of me Going before my feet with every step I take"
"All of my joy, all of my peace
All of my purpose
All of the confidence in knowing that he's working
All of the healing in the middle of the hurting
At the end of the story, all the glory he's deserving
The battle's on I know that it's for real
But I'm standing on the rock that never shakes
The dark is always gonna try to steal
But I'm not afraid"
"Father, You say everything is gonna be alright But my circumstances say I won't last through the night I need Your word to hold me now, need You to pull me through I need a miracle, a breakthrough, I need You
They say You hold the whole universe in Your hand But my world's falling apart like it is made of sand Am I small enough to slip through the cracks? Can You take my broken pieces and put them back?
Give me faith to believe You are on my side Open my eyes to see You working in my life Let the past remind me You never fail Tell my soul "It is well" (oh)
Y todo va a estar bien Everything will be alright The whole world's in His hands Your whole world's in His hands In the darkness and the trials He's faithful and He's true Your whole world's in His hands Y todo va a estar bien (everything)"
"Nothing is wasted, there's always a plan
He has a purpose you may not understand
He's never been closer if you just hold on
He'll take you deeper, He'll give you a song
'Cause here I am still standing
So believe me when I say
If you shatter
Every piece of you that's on the floor
He can restore
And after
You'll be even stronger than before
He can restore
What'd shattered
If I am still here standing You can believe me when I say That He is more than able to redeem Your every pain"
"Deep within my heart, I know You've won I know You've overcome And even in the dark, when I'm undone I still believe it
I live by faith, and not by sight Sometimes miracles take time
While I wait, I will worship Lord, I'll worship Your name While I wait, I will trust You Lord, I'll trust You all the same
When I fall apart, You are my strength Help me not forget Seeing every scar, You make me whole You're my healer"
"Oh, I must be quiet enough to hear the sound
The song inside my soul
I'm going to write it down
I'm going to sing it
Loud
I'm going to sing it
Loud
No matter where you land or how far you may fall
You have heart, you have hands And the highest calling of our lives Is to find the grace at the very place we stand And rise I'm going to sing it Rise I'm going to sing it Rise We will rise"
"Yeah, God from age to age Though the earth may pass away Your word remains the same, yeah Your history can prove There's nothing You can't do You're faithful and true
Though the storms may come And the winds may blow, I'll remain steadfast And let my heart learn when You speak a word, it will come to pass
Great is Your faithfulness to me, woah Great is Your faithfulness, from the rising sun From the rising sun to the setting same I will praise Your Name, oh Great is Your faithfulness to me
Oh oh, Your faithfulness It never runs out, it never runs out (yeah) Oh oh, Your faithfulness, oh oh It never runs out, it never runs out It never runs out, it never runs out
I put my faith in Jesus My anchor to the ground My hope and firm foundation He'll never let me down, no"
"I know you think there’s no hope, but that ain’t true (Jesus saves!) I know you feelin’ regret (Like I) brought this all on myself (Like I) messed it up big time, and this time I don’t deserve God’s help (Thinking) how can God forgive me after knowin’ what I did (can He?) After knowin’ that I hid from Him, and I stayed away and backslid (Listen) Jesus came for the sick (So true) Jesus came for the weak (Amen) Jesus came to give good news and to set the captives free (Amen) Jesus came for the poor (Amen) Jesus came with the keys (Amen) Jesus came to remove the chains so the prisoners are released
Everybody’s got a blank page A story they’re writing today A wall that they’re climbing You can carry the past on your shoulders Or you can start over Regrets, no matter what you goin’ through Jesus, He gave it all to save you He carried the cross on His shoulders So you can start over"
"I refuse to keep this buried deep inside of me Yeah this little light of mine, it's time to let it shine a bit 'Cause there's no point in hiding it, it's everything I am The source of all my hope and it's the reason why I stand And I pledge allegiance to be somebody real There's no more holding it back, I'm showing them how I feel 'Cause love is more than a word it's a noun, and a verb and hiding it is absurd Ya heard
Ready or not Here, here, here, here I come I'm about to show you where the light comes from oh oh ready or not, here, here I come This is who I am, I won't hide it I'mma take it all over the world To the young, to the old, every boy and girl Ready or not, here, here I come I'mma show the world where the love is
Ready or not"
I want God to use me in ways I didn't know was possible. I'm still in awe
how God has given me fulfillment and purpose from my darkness. I definitely
still have to tuck that fear and doubt back down each time I
share or make a post. It's so scary to put myself out there, but I have
seen how getting out of my comfort zone and following His nudges makes a path far greater. Although I could still come up
with every excuse why it's not the time right now to jump into writing again, I know
it's His timing. So ready or not :) If you are still overcoming, I
hope this blog can help comfort and encourage, and most importantly help
you see light in the darkness.
If you want to save or continue listening to the soundtrack: -> YouTube -> Spotify
