Acceptance

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My first symptoms showed up at about 4 or 5. Alopecia and skin discoloration. Slowly it progressed and at about 10 My parents began the search. I was officially diagnosed at 12 by doctors at UCLA. I was then sent to UCSF and went through several teams of doctors doing research. I call ot my guinnie pig years. In the end all I got from them was that it would progress and then a vague promise that the progression would stop when I stopped growing.

At 14

I had some fat taken from my rear end and had it implanted in my right cheek. It wasn't much but did help me get through the rough teen years. My mother was a basket case. Crying all the time about my life being ruined. No man would want me. It was so frustrating but it pushed me. I decided I was going to be the sweetest most helpful person you could ever imagine. And it worked. I dated and had tons of friends. 

 

At 17 my brain became affected. Daily migraines that are unimagionable. Seizure that presented like strokes. Confusing, scary, and painfull. Control meds the rest of my life. In my early 20's I spoke with various surgeons about reconstruction but it never panned out. Generally due to the refusal of insurance company to cover "cosmetic" surgery.

 

In the end that's ok. I've accepted that there is so much more I want to do with my life then spend it in rehab or hospital beds. I have an awesome husband and 2 perfectly healthy kids.So if you see me, it's rombergs as its come to me. The fat graph is long gone. But I am surviving, making friends, and feeling love every single day.