I have always dealt with headaches, describing them as "my brain hurting". I went along thinking ok this is life, get used to it. I've had to be taken by coworkers to the ER because the pain was so unbearable I couldn't stand to finish by shift. Fast forward to 2016 being pregnant with Jaxson I developed what I thought was carpel tunnel. My OB referred me to a neurologist and started meds. Tried several and nothing helped, symptoms started to progress to shoulder/neck pain, memory loss, hand weakness, shaking, numbness and a lack of circulation feeling to all extremities. I dealt with this for 2 years without my neurologist listening to what I had to say. 2019 she referred me to a hand surgeon, pretty much washing her hands of my case. I am so thankful for this moment because I finally had someone that listened to me and believed me when I said "this is NOT carpal tunnel". I was finally diagnosed with Chiari Malformation Type 1 by CT of my neck. So I'm thinking ok I have no idea what this is and was referred to a neurosurgeon who gave me 2 options: pain medication or surgery. Well that was 2 NO's for me. There is no cure for this.
I battle some form of pain everyday. Some days are worse than others. I utilize all CBD products but truthfully nothing ever takes all the pain away. With my job and kids taking pain pills every day is not an option. Coming towards the end of my pregnancy where the retaining of fluid is inevitable my battle is harder and harder every day. I have been blessed to have a healthy pregnancy and pray for a safe natural delivery.
Today I was able to be apart of the 5th Chiari Awareness Parade and join the Chiari Smiles Foundations Support Group lead and founded by an amazing woman Dawn Keys.
With this disease and lack of knowledge/awareness you feel alone, you become depressed, you look normal and may have a smile on your face but inside you are battling some of the worst pain you can imagine. How can you explain that to people? I am so thankful for finding this group. Thank you Chantay Haywood and Heather Taylor for sharing this group and your journeys with me. Also a huge thanks to my cousin Ashley for coming with me today.
And Lastly, I serve a Mighty GOD, a Healing GOD. I speak and claim healing over my body 🙏 🙌
#chiarismiles #chiariawareness #chiarimalformation #chiaristrong 💐
Thank you Stephanie for allowing us to share your story. We love you so much and can’t wait to meet your precious baby soon.
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Congratulations Stephanie 🥰🥰🥰🥰🙏🏼👏🏼 Luke is here everybody 💐💐💐💐💐💐☀️
