My Story
From Surviving to Thriving
I was born with Ehlers-Danlos Syndrome, a hereditary connective tissue disorder affecting the collagen. I spent the bulk of 14 years in a hospital bed in my home, having 19 surgeries and taking up to 29 prescriptions per month, including 125 mcg per hour of fentanyl.
In 2017 I got Complex Regional Pain Syndrome after surgery on my right hand and had to find a way to minimize the symptoms in order to continue to live. I’d call my pastor almost every day and tell him I didn’t know how much longer I could choose to continue to breathe. Unlike with conditions that steal your life and make you fear you will die, CRPS made me afraid to live. I wanted to live but I couldn’t continue to live with too little sleep, being tortured and screaming in agony constantly.
My pastor was a great comfort to me in this difficult time. He told me two things that especially helped. He told me he wasn’t sure why I was suffering but the Bible tells us that God uses all things to work together for those who love God. He also said that we are to thank God. He encouraged me to thank God for what I was dealing with.
One day I finally listened, and I thanked God for the symptoms I have, for what I would learn from it and the compassion I’d be able to have for others dealing with such torturous and bizarre symptoms. I thanked Him for using it all for my good and His glory.
Soon after that I found PEMF therapy, which I describe as saving my life. When I added healing my gut-to-brain axis to PEMF therapy, I was no longer disabled by my conditions. I have since found other supplements that add to the strength of my healing.
I like to say I still have EDS and CRPS, but they no longer have me. I still have some symptoms, though slight as they are. You’d never know if I don’t tell you. Now I spend my recreational time roller skating, indoor skydiving, ax throwing, bowling (7 games in an hour even!), going up and down water slides and more. I run up stairs instead of using an elevator. God is now using everything I’ve been through, medical and otherwise, for my good and His glory, helping others to see their way through similar and other issues.
My hope is that I can help others to find hope, healing and most of all a relationship with God, who is the only reason I got through so much. I can do all things through Christ who strengthens me, and so can you.
My Ehlers-Danlos Syndrome
Loose, unstable joints causing dislocations and extreme joint pain.
Ribs coming out of place constantly.
Nerve damage from joints staying out of place and pinching nerves.
Internal fragility causing 8 hernias, adhesions and vascular issues.
Gastrointestinal issues.
Periodontal issues. My teeth were constantly pushing back into my mouth and often broke. My gums came off in chunks. Eventually I had all my teeth removed.
Scar tissue cleaned out from both of my knee joints. Hypermobility beyond the range of cartilage had caused inflammation and scar tissue.
Bilateral bunionectomies and foot reconstruction. The ligaments were so loose, the bones of my feet wouldn’t stay in place.
Joint fusion surgery on my right thumb.
Bilateral shoulder capsular shift to lift my shoulders back into place.
Several surgeries to remove adhesions from my abdomen plus seven hernias repaired.
Hysterectomy with ovariectomy.
24 teeth removed in the same day.
Vein removed from my left hand due damage caused by IV insertion and removal.
- Lump removal on my right hand, which was the injury that brought on CRPS.
My Complex Regional Pain Syndrome
General Body:
- Hot flashes where I would feel like I was suddenly so hot I could die. Everything is to the extreme with CRPS.
- Feeling as if a 2” long needle was pushing out each drop of sweat.
- Feeling as if I’m being electrocuted in my colon or on my spine. This would drop me in a heartbeat!
- My body feeling like it was buzzing with electricity.
- Random spots on me feeling like they are on fire.
- Wind on my skin feeling like sandpaper.
Brain/Head:
- It felt as if there was a lawn mower or motorcycle turned on inside my brain, so bad that I would grab my head and scream.
- It felt like my brain was buzzing with electricity. At times it felt like my brain was seizing up.
Eyes:
- Feeling as if I’m being stabbed with a round sharp ice pick through my eye, ear, temples, or violently through my body. Sometimes it would feel like a flat thick metal skewer in my eye instead of the ice pick.
Hands/Feet/Legs:
- Feeling exploding fire in my right hand and as if my left hand was being crushed in a vice.
- My toes felt like they were on fire. Heat would shoot up my left leg and my right foot felt broken.
General Body:
- Extreme nausea, as if every cell in my body was nauseous.
- The almost constant feeling of having a heart attack.
- Sleeping 0-2 hours per night, this lasted for 2 years.
Brain/Head:
- Dizzy spells and vibration/sounds causing brain shaking and other symptoms.
Eyes:
- Vision issues requiring glasses.
- Eyes shaking left to right.