Me, Myself, and I
I was born a blonde haired, chubby cheeked, summer baby, July 5th ’93, making me 20 years young – though, I feel much older. I started off my life in an old trailer, in a small town, both of which I still reside in, and things were pretty normal for a time.
When I was four my mom thought I had lazy eye and took me to see an eye specialist. Turns out my lenses were both dislocated (ectopia lentis) and I was only seeing out of the edge of them. Not too long after that I was having two eye surgeries to remove both lenses and being evaluated for a connective tissue disorder (Marfan Syndrome).
The following September I started kindergarten and for the most part things seemed to return to normal. But the older I got the more mystery medical issues that would appear, until by 10 years old I was living with some form of pain everyday.
High school was fun for me while it lasted – like most teenagers I always had something going on and keeping me busy and happy. But, eventually an excruciating, constant, and ever worsening pain in my ribs forced me to continue schooling at home while we tried to find answers. Despite various trips to the hospital in agonizing pain, more tests than I could count and a plethora of degrading and heartbreaking doctor appointments – during which I was told “there’s nothing wrong with you” and “it’s all in your head” we wouldn’t find any answers for years to come. Today, I have a firm diagnosis: a connective tissue disorder. My doctors have always been fairly certain that my tissue disorder is Marfan Syndrome (I meet the major criteria having ectopia lentis and aortic root dilation), but the more new symptoms I develop the more they wonder if it could actually be Ehlers-Danlos Syndrome instead.
It’s been a long time since all of this started and though the health issues continue to pile up I’ve learned to live and cope with my disorder the best that I can. The rest of the details of the in-betweens and ups and downs are all in the blog posts.
Thank you so much for your support and readership!
– Katie xx