Meet Chiari Warrior – Chrissy
September is Chiari Awareness month. Each day, I am going to share one person’s journey…in their own words. Chiari malformation is a condition where your brain herniates below the base of your skull, compressing the brain stem and spine. The symptoms are unbearable, at best, and there is no cure…
When I was 22 I was diagnosed with Systemic Lupus after the birth of my son. I struggled for months with being sick. I went to doctor after doctor with no answers. I became so ill that I ended up contacting the Lahey Clinic in Burlington Mass. They diagnosed me as having the Systemic Lupus. My family was devastated, I just kept my focus on getting better as I had a 9 month son to raise. I had to travel back and forth to Lahey for years sometimes twice a month to see the doctor depending on what complications arose from the Lupus treatment. We finally got the disease under control enough for me to start to live a "normal" life. Then in 2013 I started to notice my body struggling again to be healthy. I advocated for a Brain MRI as the last one done was when I was first diagnosed with Lupus. That's when they found the Chiari Malformation. I don't usually get sick but when I do I get some thing I've never heard of. It didn't end there either. They then said you need to come back and have a MRi of your C-spine. Where your brain MRI ends and your C-spine begins we've found a large mass. On the MRI of the C-spine they found 4 syrinx. They then diagnosed me as having Syringomyelia. I end up in Boston within a month or two. Saw Dr. Hielman. He recomended a brain decompression. I made the choice to have the surgery in hopes that it would help with my symptoms. I had the surgery a year ago September 2016. I still struggle with pain, headaches, nausea, difficulty swallowing, numbness of my extremities, the list goes on for us Chiari sufferers. My diagnoses of Chiari and Syringomyelia has impacted my life in so many ways physically, mentally and emotionally. I choose to focus on the positives of my experiences thus far and very much welcome the ones I've yet to hurdle. Being a "Chiarian"(yes I made this up!! LOL) is 24 hour a day 7 days a week kind of job, as we who have the Chiari can surely attest to that. None the less I'm grateful for my life and feel blessed to be a "chiarian" for with it's struggles and obstacles it's created in my life, I've found a stronger, determined and more mature me. "Without change there would be no butterflies." It's absolutely true. My journey with this disease has very much helped me to find my wings and inner beauty.
The disease has shown me what an amazing son I have. He's been my biggest fan and supporter since day one of being diagnosed with Systemic Lupus and then the Chiari and the Syringomyelia. He's shown incredible patience and humbleness when it came to helping me win in this battle against a never ending relentless disease. Growing up in this crazy world is hard enough never mind adding my stress to his plate. He made it look easy and kept up his grades plus participated in drama. Thank goodness for the drama shows. They helped us forget about the crazy chaos of the doctor appointments and tests. Thank you Kaden Maberry for showing me the power of unconditional love and support. I couldn't have done any of this without you. Your my daily inspiration.
I wish more people could understand this awful disease. Having chiari was not easy for many to understand. I lost my family, my friends, my home, my identity as a person. 6 months ago I became homeless as a result of leaving a unhealthy marriage. Trying to succeed on your own while having a debilitating disease is next to impossible. However I kept pushing and working hard to succeed none the less. August 28th I signed the lease for my first apartment. Success is a great feeling. Thank you to all that have helped me along the way.