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Jordynn Cooley

Hey Readers ! My name is Jordyn. I am from Seattle Washington but I live in Mill Creek Washington now . I was born with Myelomeningocele Spina Bifida, Hydrocephalus and Arnold Chiari 2. I have a VP shunt

Growing up as a child with Spina Bifida was hard for me. I learned to just deal with it. I was pretty lucky when it came to the Spina Bifida. The doctors told my mom I wouldn’t walk. But I proved them wrong.

I was delayed. School was always hard for me because I had a learning disability. I was always slower than everyone else. But I made it through . I graduated high and went to college .

In my life time, I have also I’ve had 3 or 4 shunt revisions. My most recent surgery was in 2015 on my shunt. The catheter that’s connected into the brain was massively clogged. I wasn’t showing the normal symptoms of shunt malfunction I never have. The doctor went in and did an exploratory surgery basically and just happened to find it.

Arnold Chiari Malformation 2 didn’t affect me until after finishing high school. I had my first decompression surgery in May of 2014. The first decompression wasn’t done correctly. So it’s been giving me a lot more issues since. I had to stop working and stop going to college because I couldn’t concentrate and I was constantly in pain.

It was hard for me having to stop going to college, because I love learning new things. With everything going on with my health getting worse it was all just too much for me .I had my second decompression last April. They had to fix what the last doctor messed up the first time. It seems like I’m at a constant decline.

I just got diagnosed with POTS last week. And to me it’s just adding another thing on my plate that’s overfilling with issues. For those who don’t know , POTS stands for Postural Orthostatic Tachycardia Syndrome. It’s a form of Dysautonomia that is estimated to impact between 1,000,000 and 3,000,000 Americans, and millions more around the world. POTS is a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing.

I like learning new things. I like to read. I also like Crocheting. I like doing bead art projects where you match the symbol with the colored bead and it creates a picture on a canvas. Even doing these things has been a struggle though and takes a lot of patience.

Some of my goals that I have are to figure out what all I can about my health issues. I also want to figure out how I can make my life better with it. But it’s also part of my struggles. I’d like to eventually work up to working a few hours a week if i can. I hate feeling like I can’t do anything.

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