Cari’s #Journey2Better : Recreating Life with Ehlers Danlos Syndrome

⚾️❤️‍🔥🙌🏽🏆Super proud of my niece, Addison and her Team, look at that Championship Ring! 💎

They took down all of the other Madison County Teams to take the Championship! This girl is an amazing team player and a focused champ!! 💪🏽

I see a Future Champion of Life in the making! I’m one proud Auntie over here and I wish I could have been there!! A FaceTime Celebration is definitely a must today! 📱

🐶❤️ There is no one happier to have me back home to than this little girl❣️ I can’t imagine life without my , she truly is the best little in the world !! 🥰

❤️‍🩹🦓 The first 3 days after my tethered cord release surgery we’re definitely the toughest.

Despite being given meds for , I had a mast cell attack post op. My blood pressure, pulse, and fever spiked. My lungs began to fill with fluid and I was in so much pain I couldn’t stand the weight of my own body on the bed.

Despite it all, I pushed through and overcame it all to get stabilized. It wasn’t easy, but I gave it my all to push through and I made it.

Due to having crps , my body wanted to go into shock, but the , more mast cell meds, and extra pain meds got me through it.

It was hard, but I can do hard things and my eyes are dead set on turning around all the damage done from almost 40 years without diagnosis and treatments for Ehlers Danlos Syndrome.

I’m proud to be one of the patients contributing to understanding and medical knowledge that will change the future of this condition.

Shout out to my neurosurgery team for treating my Complex Regional Pain Syndrome, MALS, and SMAS seriously. It’s because of them I was able to make this happen
despite the comorbid conditions that made me so high risk.

Gofundme :
gofundme.com/f/journey2better-cari-luz

Medical PayPal : https://www.paypal.me/cariEDSjourney


•

❤️‍🩹🦓 5 Days Post Op : **warning, some graphic pics in swipe ** Transitioning off of the infusions used to help prevent spread and worsening of my CRPS has been difficult but semi smooth so far.

The Neurosurgery team has been very communicative with me on what I need, what’s working for me, and with how I’m tolerating the changes being made to convert me to regular pain management medications. We are adjusting my regular pain management as necessary to balance the changes and to keep things running smoothly. Today they removed the and sewed 2 stitches before I’d received anything for pain yet unfortunately. So I squeezed the crap out of .jess.k ‘s hand while they did it (pics in the swipe for those who want to see ). I’m so grateful to be making strides. So many symptoms seem to be improved and I’m so grateful to be where I am today. Without so much wonderful support, I don’t know how I’d do this. Thank you all so much! 🥰❤️‍🩹

Gofundme :
gofundme.com/f/journey2better-cari-luz

Medical PayPal : https://www.paypal.me/cariEDSjourney


•

❤️‍🩹🙏🏽🦓 Waking up this morning I could feel The Lord surrounding me in every way. I can feel every prayer from multiple churches, family, friends, all of you on social, and the community. It’s so humbling.

Today the Angels will be guiding my surgeons hands. I’m grateful for this man that God called to help the EDS family. God working through him has granted me so much more life and he continues to give life to myself and others through my journey.

I don’t even know how to handle the emotions of this day. In my moment of overwhelm a cardinal that I believe was my Granny Millie came to give me peace. I just wanted to express my for everyone praying for my release today.

Please catch the vlogcast interview today on The UnHerd Ones] YouTube channel at 5pm CT where I share what makes this surgery different and special from any other surgery I’ve ever had. I found out some heavy information about 3 weeks ago that changed everything I’m feeling today.

Thank you all for everything. .luz , .jess.k , and The UnHerd Ones] will be keeping you posted on my progress! A surgery needed for 40 years, today is the BIG day! Love y’all!!


•

❤️‍🩹🦓 So after a long trip to get here, I was DRAGGING yesterday …. I didn’t sleep well from surgery anxiousness, so I drank my UP to calm my nerves and to boost my flair over my flare! Lol 😆

Paul wheeled me in for my Pre-Op Appointment and Jessica Krukowski
held my hand the whole time. She has been an incredible help and emotional support for not just me, but Paul Loughlin Luz as well.

It was hard appt for me. It was amazing in how supported I felt with a 4 hour game plan meeting among the directors of of my surgery and recovery team : One from Internal Medicine, my Hospitalist, my Anesthesiologist , and my Head Neurosurgery Nurse.

It’s enlightening in many ways to prepare for a surgery in this way. On one hand it eased our concerns in receiving the support I’ll need from my team. I have developed a long list of extensive needs and risks. I’ve never experienced this kind of compassion and planning for an event free operation.

On the other hand it’s extremely sobering to recognize just how serious of a patient Ive become.
I wonder how I ever got here after living such a “healthy” life for so long…

I saw the complexity of my condition laid out before me in a 4 solid hour event with a 4 person team going over everything I’ll need for this. God please protect me, grant me healing, and give me the strength. 🙏🏽❤️‍🩹🦓

Gofundme :
gofundme.com/f/journey2better-cari-luz

Medical PayPal : https://www.paypal.me/cariEDSjourney


•

🏕❤️‍🩹 We made it safely to Charleston! Here is the view at our campsite that we will get to enjoy through my recovery! Im really happy to have my 2 favorite people here to support me through this surgery ( .luz & .jess.k ) !

My , Jess , will be able to continue on her own while she’s here so we’re definitely in this together! 🤪

Having a best friend to go through all of this with, that deals w all of the same issues, and the same journey is priceless. Plus she keeps me out of Paul’s hair 24/7 😂

It’s definitely time for some much needed rest before we get more settled in more. The journey to get here from home is a long one and we cannot wait to share more!

Being here and the sacrifices made are worth every for a better quality of life.


•

I’m here with my Chronic Twin, Jessica Krukowski who is joining me in my latest chapter! It’s 5 days till my in Charleston, SC and we are relaxing at a cottage in Columbus, Ga. 💕

A friend of mine weve met along the way now donates a place for us to relax each way on my . Each time we are either traveling to my specialist or home, she gifts us a gorgeous room (or one of the cottages) at her Bed and Breakfast. It’s the perfect halfway point opportunity to take time for us, to catch our breath, and to rest.

As Jess and I have learned, not just in meeting each other, but with blessings like this ; You never know in what ways God will pave the path, creating a way to make things happen when you have and embrace your journey.

Both of us stepped into this not knowing HOW we would be able to make it work. All we knew was that our life depended on it and we chose to start. The rest has fallen into place along the way and has been full of .

When you don’t know how things will work, just start. Step out in faith and allow the rest to come as you go. Just like meeting my friend by staying here a couple of times, we would have never imagined that she would bless us with a gifted place to feel like a princess.

More valuable than that, her friendship is something we would have never gained had I not gone through this journey. There has been far more blessings than setbacks on this path and at this point I wouldn’t change a thing about this life.

When we embrace our journeys, we never know the beautiful places it can take us to or the amazing people we will meet along the way. Love the path you are on and open your heart to the beauty that surrounds you in it.




•

•

Hey y’all!

Cori here with The UnHerd ones. My daughter and I had the honor to spend part of my day with Chip Norris and his staff at the Norris Lab today. The strides they are making is remarkable. It’s even more remarkable that most of their staff has EDS themselves. I was so moved.

Thankful for The Norris Labs efforts to help our community and their support of our efforts to help our community as well. ❤️🦓💪🏼

😱🙌🏽😍💜 OMGOSH!!!!!!!!! THEY’RE DOING IT!!!!!! They’ve identified an hEDS gene candidate that’s going beyond anything they’ve ever studied! 🙌🏽🙌🏽🙌🏽 Y’all this is huge! I participated in a research study and toured the lab last fall before my fusion and have been in contact with the lab and helping them in any way I can! Now they have broke ground and are making headway on the biggest thing to happen for my condition in YEARS!!!

Join me on podcast we are doing on our YouTube channel tomorrow as gives us all the details!

This is so critical for the future of ⁣!!!! There hasn’t been a candidate with this much hope for a genetic test until this very moment!!! If you or your doctor suspects you might have it, very soon there is hope you will be able to be genetically tested!!!!! 🎉🎉🎉🎉

🇺🇸❤️ So grateful to all that have served for my to chase my , my , my , and ! Every single day I’m always thinking of the less fortunate and the opportunities I have in this war on . In the sacrifices I’m making as a trailblazer to pave a path forward for the community , my heart overflows with love for our heroes that pave the path forward for our country! Today we are honoring those who serve our home. Our hearts are with you and those who sacrifice alongside you.

❤️ Sometimes life feels so overwhelming in everything we go through, no matter our life, we have battles. I’ve had to learn to really stop and think about just how many blessings there are to count.

Like having not only a husband that loves me through this crisis, but also gets my obsession with a wood burning ! He loves to give me that comfort when I’m here and on the road w our fire pit! I’m grateful for him, this firewood, and our home for however long we might get to keep it while dealing with my health battle.

It stays cool enough inside for me to burn up to the early summer. My dad always burned a fire with me while I was growing up and it brings me comfort no matter how much pain or suffering I experience.

He gets that it’s not just a fire to me. It’s something that wraps warmth around my soul.

💜🦓 Had a blast staying w my a few days! I had my appointment at on Tuesday and got the opportunity to visit till yesterday!

As always ; we acted crazy, had fun, laughed our heads off, cried together , and spent some flare days on the couch binge watching the best of Netflix!

I can’t wait to hit the road again together in next week! It’s almost time to go kick some more b***y with my surgery! This will detach my spinal cord that has been a problem causing and now debilitating birth defect I’ve lived with undetected for 39 years!!! 😳🎉💪🏽

Always seize the moments you have in your journey to make memories of the good stuff! Its what you’ll remember the most looking back!! 🙏🏽💜🦓

🥰🏡 Things moved so quickly as I wrapped up diagnostics at Mayo and saw the specialist. It got so confusing on what to do, when, and where would I be, but we are able to be home for a few weeks and another chapter of my journey is all wrapped up in a pretty bow! 🎀

It’s hard to fathom the chain of events that occurred when my GI tract declined after my Skull - C3 Fusion. Dealing with that while recovering from one of the most painful and complex surgeries I could have was quite the ride!! 😅 I feel so blessed in all the answers I was lead to along the way, for the opportunity, and for the support I’ve received that got me through it! I wouldn’t be here without all of that and I hold you all so dear in my heart. ❤️

It’s still so hard to believe that I almost starved to death and that I have a feeding tube now, but that’s going to have to hold me over because my neurological system is declining rapidly and I’ve chosen to move forward with my spinal cord release before I will move into the Gastro Vascular Surgery to restore proper function to my organs. So, I’ll be having the Tethered Cord Release on June 16 in Charleston. It should take me 1 month to recover enough to move forward with the 4 Part (let’s just call it an Artery/Gut Overhaul).

For now I just want to see my family, my friends, and I want to focus on the blessings that lead me to this point. All I can do is pray for the strength I’ll need in the next chapter of my . Facing 2 back to back major surgeries, one of them from all that is insane, is not one of those things that we can ever truly be prepared for, especially when I just came out of one and that pain is still a very detailed memory. All I know is that God will get me through it. He gives us what we aren’t able to have without him, Happy Sunday to you all! 😇🙏🏽💜

Gofundme :
gofundme.com/f/journey2better-cari-luz

Medical PayPal : https://www.paypal.me/cariEDSjourney

🤷🏽‍♀️ Every. Single. Day..... but life keeps moving, so that makes us . We battle this beast 24/7. We push through and to keep going. We latch onto and we refuse to give up. 💪🏽

** Follow podcast on YouTube , TT, FB, and IG to learn more and for an opportunity to share your story. It’s time to Be Herd! 💜🦓

🦓 May is EDS awareness month. I had signs and symptoms my whole life yet I wasn’t officially diagnosed until I was 38 years old leaving me to suffer the consequences of a condition left to play out.

Even though EDS is not considered rare, it is rarely diagnosed leading to a decline in preventable symptoms and conditions. This is the norm w and a lot of times people aren’t diagnosed until their 5th or 6th decade or never.

Know the signs of EDS and feel free to reach out to me for any questions. Once I knew the signs, I noticed just how many people in my life have also had the signs as well. Awareness is everything with a condition that impacts enough people that we all usually know not just one but a few people who either knowingly or unknowingly have it.

💖🐶🎂🎉It’s so hard to believe this girl is 7 years old today! 😱 I’ll literally never forget the day we got her, she was only 4lbs and was so teeny I was afraid Id accidentally step on her and kill her! Lol She was always under my feet wanting love!

She’s been the most amazing in the world and has been by me and .luz through everything and for our entire marriage plus 1 year! Year 6 was a difficult year for Dolly, losing her sight and becoming fully blind due to . However, she has bounced back better than ever and I wouldn’t have expected anything less from her! She’s our true pride and joy that’s for sure! 🥰 Love you, !!

I haven’t had time for things to sink in yet after (FINALLY) wrapping up diagnostics at Jacksonville , but we made it to Florida for my follow appointment with my and specialist. Tomorrow is the big day that I learn what lies in the near future for me as far as GI surgery goes. 😬 On a positive note, this hotel room we got has a gas fireplace! Yes I know, it’s warm down here, but if you know me, I’m the type to crank the AC just to have a fire to calm my nerves! I’m pretty obsessed with them to a fault ... poor Paul. He isn’t near as cold natured as I am.... 😂🙏🏽 Prayers appreciated for my fate, but also for Paul since I might totally burn him out tonight.... 🤣😅

Gofundme :
gofundme.com/f/journey2better-cari-luz

Medical PayPal : https://www.paypal.me/cariEDSjourney

💖 Have a dream? What’s holding you back? Remember we go where our goes so don’t let , discouragements, the time it takes, or distractions get in the way in the way and keep your eyes on the prize. Have the nerve to take the first step and to keep going!! 👊🏽

Was laying in the bed feeling bout half dead, drank an UP and now the whole camper is CLEAN!! 🎉 Sheets/Blankets, bathroom, kitchen, floors, organized medical supplies, and everything!! That’s what’s up! 👊🏽 (and don’t worry, I used my “featherlight” vacuum lol) 😂😂



@ Jacksonville, Florida

💪🏽🦓 5 months ago today I was wheeled into SICU following an Occipitocervical Fusion, one of the riskiest surgeries you can ever have, to stabilize the hypermobility in my neck that was putting pressure on my brain stem, spinal cord and nerves. The CFS Fluid around my spine was getting blocked in several places and I was at risk for internal decapitation, stroke, paralysis, and sudden death.

Just one more trip and fall and it could have been all over for me so the fainting spells were definitely keeping things very dangerous. I had to fight hard to discover my own diagnosis and I located 1 of only 4 experienced, highly specialized neurosurgeons in the U.S. to confirm my diagnosis.

My only option was to fuse my neck from skull to C3 and I never had the chance to do PT to prevent or rehabilitate the problem. This was due to a lack of General knowledge among the medical community of this condition that happens in 1/15 EDS Cases.

I’m now in a similar life threatening situation with and . I have fought once again to get to diagnosis and treatment is being discussed. I will never give up and you shouldn’t either.

Should you ever find yourself in a situation with “no answers” where doctors tell you “nothing can be done but to treat the symptoms”, fight for your life. Had I not fought, I wouldn’t have lived and I wouldn’t have the chance to beat this latest battle either.

A lot of times answers are out there, we just have to fight to find them, especially with such a newly studied condition like . God works incredible miracles through our suffering. He always turns into a .

Gofundme :
gofundme.com/f/journey2better-cari-luz

Medical PayPal : https://www.paypal.me/cariEDSjourney

❤️ Being reminded of just how many amazing people we are blessed by is something I like to be surrounded by every single day! 🥰

Thank you to everyone who has sent us cards and well wishes!! 😘 I’ve been placing every card on the fridge and cabinets of to create a collage of encouragement!! I’ve also been collecting inspirational stickers to compliment them!

One of my favorite cards is from our Fertility Clinic that helped us through 3 failed IVF rounds before I knew This battle was coming. They are storing our little adopted until we are able to find the angel that will help us bring them into the world. I fight to get better for those babies all day every day so we can meet and raise them as soon as I win this war. 🙏🏽💜🦓💪🏽

Gofundme :
gofundme.com/f/journey2better-cari-luz

Medical PayPal : https://www.paypal.me/cariEDSjourney