Tag: CCI

Ehlers Danlos

Dental Braces Look a little Different with EDS

By Go Love TeachJanuary 30, 2019

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Educator friends, my college students and I have a page over @goloveteach . Find us there to see all of the amazing things they are up to! ❤️ #highereducation #academic #goloveteach

I knew I always loved dogs. However, I didn't fully understand the fullness that a dog can bring into someone's life. Our furry, four-legged little fluff we call, Remington, has been the best therapy. She has offered so much humor, wonder and mischievous puppy trouble in the midst of such adversity. Over the last 5 months, I've learned about Craniocervical Instability and what it means for me day to day. I have also learned about hypermobility connective tissues issues such as Ehlers Danlos and now see the fingerprints of its presence in my life for so many years prior to knowing its name. The newness of CCI has been a learning curve. It's rare. It is not commonly understood and it often goes misdiagnosed. Hardest of all is understanding that it is not like other injuries or ailments I have had. It doesn't get better, it doesn't go away. It waxes and wanes, leaving me at times canceling plans or fearful of making them. I've learned that the face of chronic pain can be camouflaged under a smile. And, that it can be confusing for those around when they see the on again, off again neck brace. While there are many unknowns, what remains controllable is the attitude in which I approach the road ahead and whether I succumb to fear or a deep faith. So, like this precious little furry friend of mine, I feel kind of new here. Suddenly, I don't feel at home in my own skin. My strong mind is hoping that my weak body will catch up. But, if not, my attitude remains in my control and so does my choice to make the most of the life I have been given. While I continue to smile my way through it, I am going to talk about the pain of the struggle. That gap, between the pain and the smile on my face, is where God's great grace rests in me. While Remi continues to navigate this new world around her, she brings us hope in tail-wagging laughter & healing through the eyes of an overly optimistic puppy in all situations. #craniocervicalinstability #ehlersdanlossyndrome I have found so much encouragement from @ehlers.danlos @gonnetopots @mysteryelles @lara.bloom

I just found @gonnetopots yesterday and I’ve found so much comfort in seeing her JOY in the midst of such great pain. I found she can articulate her story so well when right now I find myself at a loss for words. Posted @withrepost • @gonnetopots i am very thankful for answers and hope. but craniocervical instability is scary. i am still processing my diagnosis. most of the time, i’m “okay”. but sometimes, i cry. like big crocodile tears. i worry about the future. and having this very major surgery. i want it to all go away. i’m still accepting my “new” reality. but God grounds me, and gives me peace beyond words. He helps me to keep smiling through the pain. i know He wants this to be a part of my story. i hope i can glorify Him through it 💚 #craniocervicalinstability #keepsmiling #godsgrace

This hit home for me today. Posted @withrepost • @gonnetopots “and if not—He is still good” there is so much truth in this. sometimes we pray for relief, and we don’t get it. sometimes we pray for answers, and they don’t come right away. and it’s DIFFICULT. but it doesn’t mean God has forgotten us. when i first got sick, people always told me (with great intention) “you’ll get better soon” or “you’ll be back at it in no time”. i wanted to believe them, but unfortunately years later i am still sick. i have so much hope for healthier days, but Gods plan comes before mine. i need to trust him with my story, no matter what. these trials have brought me a new perspective, and have helped me to find joy even in the smallest things. i’m not necessarily thankful for all the things i’ve endured, but i’m thankful for what they’ve taught me. He is still good. this shirt from @graceandbrace reminds of that 💚

I ran to the store and left her under the watchful eye of Daddy Daycare. Apparently, our rules are slightly different. In the tub you go...

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