Praising Him in the storm

Praising Him in the storm Follow along my journey of living life with vascular Ehlers Danlos, and how God is still good!

Pain is exhausting!! Today is one of those days I don’t have the strength to fight, where the pain wins. I’m laying here...
08/21/2024

Pain is exhausting!! Today is one of those days I don’t have the strength to fight, where the pain wins.
I’m laying here trying not to move because EVERYTHING hurts… even typing this hurts… these days are hard! But it reminds me how truly thankful I am for Jesus! He’s already won my battle with pain! When it’s time I’ll rest safely in his arms! It hurts my heart to think of how hopeless you would feel, and how alone you would feel if you didn’t know Jesus!!

This is such a good explanation of a chronic illness like Ehlers Danlos.
05/11/2024

This is such a good explanation of a chronic illness like Ehlers Danlos.

Day 3 – Zebra StrongThe zebra is our symbol and we are Zebra Strong. No two zebras have identical stripes just as no two...
05/04/2024

Day 3 – Zebra Strong

The zebra is our symbol and we are Zebra Strong. No two zebras have identical stripes just as no two people with a type of EDS or HSD are identical. We have different symptoms, different types, and different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with these conditions, reducing the time to diagnosis, and improving pathways to care.⁠

⁠Living with an EDS or HSD is not easy. Being zebra strong is facing challenges with EDS or HSD, facing struggles and difficulties daily. Being zebra strong is making adaptions to continue doing things you love, or adapting to no longer being able to do things you may have once done. Being Zebra Strong is finding strength in the face of adversity, or just weathering the storm.

These are some shirts we had made. I’m thankful for a family that supported me, and fights with me!

What are the types of EDS?The current classification includes 13 types of Ehlers-Danlos syndrome (EDS). Each type of EDS...
05/04/2024

What are the types of EDS?

The current classification includes 13 types of Ehlers-Danlos syndrome (EDS).

Each type of EDS has its own set of features with distinct diagnostic criteria. Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility.

🧬Arthrochalasia EDS (aEDS)⁠
🧬Brittle Cornea Syndrome (BCS)⁠
🧬Cardiac-valvular EDS (cvEDS)⁠
🧬Classical EDS (cEDS)⁠
🧬Classical-like EDS (clEDS)⁠
🧬Dermatosparaxis EDS (dEDS)⁠
🧬Hypermobile EDS (hEDS)⁠
🧬Kyphoscoliotic EDS (kEDS)⁠
🧬Musculocontractural EDS (mcEDS)⁠
🧬Myopathic EDS (mEDS)⁠
🧬Periodontal EDS (pEDS)⁠
🧬Spondylodysplastic EDS (spEDS)⁠
🧬Vascular Ehlers-Danlos Syndrome (vEDS)⁠

Each type of EDS is caused by variants in specific genes that provide the instructions for making collagens and related proteins. Some types of EDS are associated with multiple different genes. The genetic cause(s) of hEDS have not been identified.

Day 2 of EDS awareness month.

My name is Christine and I live in a small town in southeast Georgia. I’m a wife of 24 years, and mom to lots of babies ...
05/03/2024

My name is Christine and I live in a small town in southeast Georgia. I’m a wife of 24 years, and mom to lots of babies ❤️
Day 1 of EDS awareness month❤️
The Ehlers-Danlos Society

Sharing in hopes that one day we would have more knowledge, better treatments, and Lord willing a cure!
02/28/2024

Sharing in hopes that one day we would have more knowledge, better treatments, and Lord willing a cure!

Learn how to Show Your Stripes on Rare Disease Day

That’s me! God made me special, and He loves me very much!
02/25/2024

That’s me! God made me special, and He loves me very much!

Learn how to Show Your Stripes on Rare Disease Day

First hospital stay for 2024. I’ve been having lots more chest pain, and trouble breathing. I made an appointment with m...
02/05/2024

First hospital stay for 2024.

I’ve been having lots more chest pain, and trouble breathing. I made an appointment with my doctor to see if we could figure it out. He initially thought it was pericarditis. An infection of the sac around your heart. Thankfully the labs, echo, and chest X-rays came back clear. Last night the pain got much, much worse. Off to the ER to get some help and Lord willing, answers. Just finished my echo, and getting ready for my nuclear stress test. The silver lining… I get to share my story, and all that God has done for me.😊❤️

Things are not always glamorous. Loving and trusting God isn’t always easy. This is where the rubber meets the road. This is a pain level of 9/10. This is praying with everything in your body to get even 5 minutes without pain. This is praising Him in the storm.

Yesterday morning I woke up and my head was pounding… but I was able to push through it and get some stuff done. As the ...
12/28/2023

Yesterday morning I woke up and my head was pounding… but I was able to push through it and get some stuff done. As the day progressed it was getting more and more painful. We were having a Christmas meal with family, I was present, but mainly focused on massaging my head, and letting the kids enjoy themselves. We got home, and Chris and Isaac got me up the stairs, and it felt like any willpower I had was gone. The pain went from a 9 to a 20! Chris and the kids were all in bed, so I was trying all the tricks I know. Hot shower on my head and neck, migraine salve, medicines, drinking lots of water and electrolytes… I tried a dozen times to lay down, but I couldn’t get enough relief to sleep. Finally at 4 Chris woke up to get ready for work, and I was sitting in my wheelchair in the hallway trying not to cry, because that would just make my head hurt worse. He was amazing!! He helped massage my head, and got me some different meds to try. By 5 my pain was down to a 18… but I was able to lay down, and he gently stroked my head and held me and I was able to fall asleep… we were going to go to the ER, but the pain meds there would have just added to the headache… and I’m terrified of another helicopter ride! Yes, I know that’s not a good reason, but you don’t exactly make the best decisions when you are in that much pain. We figured I would sleep for 30 minutes to an hour, and then he would take me in. I woke up at 5:15! 😱 and the pain is back down to an 8.
These headaches are very appropriately named as sui@ide headaches!! It’s been several months since I’ve had one, and for that I am truly thankful!!
I am truly blessed with my Christopher! He works so hard to provide for us, and caring for me!

So yesterday was a whole lot different than I was expecting… I had called the eye doctor about the big red floater in my...
09/21/2023

So yesterday was a whole lot different than I was expecting… I had called the eye doctor about the big red floater in my eye, and they gave me an appointment at 8:30. Gabe was able to take me to the office, and I got checked in. I was a bit nervous, but not too bad. And thankfully the office staff is amazing! Chris’s cousin Meghan was working, and she brought me into an exam room. She asked some questions, and then gave me the glasses where it covers one eye. She covered my left eye, and I looked out at the light box on the wall, trying to read any of the letters on there, and the entire box was lighting up red. I couldn’t see anything except the red. She turns it to the biggest letter, so it takes up the whole box, and still all I saw was red. So we did the other eye, and thankfully it was ok. She took me to the room where you wait for the dialation drops to work. At this point I was panicking just a bit… well maybe more than a bit… so I texted Chris, and my sister in love, and two very dear friends asking them to pray with me. I get called in to see the doctor, and she was very matter of factly looking in my eye. Usually she will make small talk or jokes with me, so this raised my anxiety even more. She confirmed what we feared, I had an active bleed in the very center of my eye, and that’s why it was blocking my vision. The pocket of blood was still there on the outside of my eye, but thankfully had not burst yet. She explained everything and answered all the questions I had. Then it was decided they would put an injection in my eye to try to stop the active bleed, and hopefully allow it to start absorbing. But she did warn me that unfortunately my vision in that eye will never go back to normal, but it should get better. They took me into a procedure room, and started getting me ready… numbing eye drops, numbing eye gel, iodine, then a gadget that holds your eye open. As much as I hate it, and it’s uncomfortable, I’m super thankful for that doohickey. Because all I wanted to do was close my eyes super tight to protect them from the needles… it was over in about 5 minutes. I got bandaged up, and Gabe drove me home. It was pretty sore, but mainly it felt like the world’s largest eyelash stuck in my eye, and there wasn’t a single thing I could do.

I’m so thankful that God gave doctors and researchers the knowledge to help people like this.

Funny fact… I had to sign a form saying the medication wasn’t created for this purpose, but that I still wanted to use it. What was the intended use of the medicine you ask?? Colon cancer… so the researchers had their heads up their butts? 🤦🏻‍♀️😱🤷🏻‍♀️

Living life one day at a time, and praising Him in the storm. ❤️

09/19/2023

One of the things that has been on my mind a lot is keeping my eyes upon Jesus. Most of the time I do great! But lately it’s been a little tough. One of the fears I’ve battled since I was a little girl has been losing my sight. Unfortunately between the vascular Ehlers Danlos and the blood thinners I have to be on to help prevent more strokes I have bleeding in my right eye that has significantly impaired my vision. If I’m being honest, my flesh is terrified! It makes every day tasks very hard. There is a possibility that the blood can be absorbed, but no guarantee. I’m also not a candidate for the surgery that is available because I’m so high risk to put under anesthesia.
So now I sit, crying out to Father God, begging him to restore my sight. But also realizing that if God chooses not to heal me, that He is still a good and merciful God. My ailments, and journey do not change His goodness.
Today I am choosing to use the red haze I’m looking through to be a “lens” of Jesus, so I can see His glory all around me.

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Jesup, GA
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