Sometimes I really can't help but feel upset with my circumstances. PKD is "the most common life-threatening disease", affecting 12.5 million people, but I feel like I'm alone. Extremely supported, but alone. I don't have anyone to ask about it. I don't have someone who's lived with it. I can only get my answers from others on the internet who I have no idea if theirs is worse than mine or better, what their history is or if it's a new mutation, or what their progression rate is...there are just so many variables. For me, it's not imminent, since I'm only 21, but I know that it will get worse. I don't know how quickly it will come or how bad it will get, but I know it's coming and that is scary.
As it is now, I can immediately remind myself how hard I hoped for a diagnosis. How happy I was that they could put a name to what was bothering me (at least some of what was bothering me). It's not treatable like I hoped, but it's something and I'm glad they could find it so I could even make choices regarding my next steps in life (and death). A lot of people don't get that.
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