Chris and I are becoming more and more hopeful that this new lifestyle change will really help me with not losing the rest of my body to Ehlers-Danlos Syndrome. I was planning to slowly phase out the negative foods over the course of a month, but I'm thinking now it may happen over the next two weeks so that when I return home from birthing Charlie I will start Primal Living. This is where I'm at, EDS wise:
- Wrists - both are damaged beyond repair. Massive bone loss, tendon loss, ligament loss, cartilage loss, dislocated (sublexed) and separated from forearms. Will have both fused over the next few months.
- Right Elbow - Tendons and ligaments are torn and displaced, membrane is swollen, total cartilage loss. Will have surgery in the next month to 6 weeks to repair as much as can be repaired, remove some of the bones, and the membrane. Will need total elbow replacement surgery in 4-5 years.
- Fingers. On my left hand my index, middle, and ring finger "crunch" when moved, and cause tendon pain through the palm of my hand when used. Pain is becoming difficult to manage. On my right hand there is burning in my pinkie and ring finger that is caused by elbow swelling pressing on the "funny bone nerve". Pain and stiffness developing.
-Shoulder. Massive "crunching" when used. Right shoulder has been dislocating since I was a child. No cartilage left. Pain now developing in both shoulders, but lower down in the muscles.
-Ankle. Heard a pop in my left ankle about 18 months ago, since then off and on pain in my Achilles tendon. Gotten worse as I've gained weight this pregnancy. So bad the other day I couldn't walk without standing on my tippy toes.
-Knees. Occasionally pain and popping. Rehabilitated with PT last year and haven't had many issues since. Took many months to rebuild strength.
-Toes. Frequently dislocate and audible crunching when bent, especially on my right foot.
- Back. Sciatica that occurs frequently and causes mobility issues and has greatly weakened my left side.
The wrists and the elbow are beyond help without surgical intervention, but I'm hoping that the rest can avoid surgery simply by changing my lifestyle. I'm currently taking between 2 and 4 percocet a day just to manage the pain. The next step would be morphine patches and it's not a step I'm eager to take.
"melody," a poem
2 weeks ago