1 Year!

It's been a whole year since my diagnosis. I think I have everything down now. I've learned a whole lot, and not just about my disease, but about genetic diseases in general. I actually haven't gone through all of the stages of grief yet. Denial and bargaining were never in the cards though, that's stupid.

I've changed quite a bit, and I'd like to say it's for the good, but it isn't. I'm even less patient now and somewhat more aggressive. I have less compassion for people who smoke. Every time I get a headache (and I read an actually study about this, it's not just me!), I worry I'm having an aneurysm rupture/stroke. I also value the human body less and my back and stomach hurt more now. I'm not sure if it's the disease progression or because I know what's happening. Maybe both. My kidneys are set to grow .7cm a year. I try not to think about my future as much because I don't think I'll be too fond of it.

But there are some good things, too. I'm way more patient with myself. I feel vindicated and relieved after so many doctors blew me off. Like...after every UTI, a nurse would tell me: "You know you need to wipe front to back." Duh, but I'm coming in with UTIs all the time, so what is she supposed to think? And doctors thought I didn't take my medication properly, because I'd sometimes get them consecutively. I occasionally imagine going back to all the Instacare clinics and saying: "You're all stupid!" But honestly, how would they have known?

I don't put nearly as much pressure on myself to be like everyone else or to please anyone. If I don't want babies, I have an even better excuse than I've ever had before. No one can judge you for that (well, some people still can) if you've got a genetic illness. I don't care about finishing a bachelors degree. I don't care about pensions or anything old-people related. I don't have to worry about getting old anymore! I have an instant connection with 1 in 500 - 1 in 1,000 other people, and I can somewhat relate to other people with other genetic illnesses. I have compassion for them, especially if theirs is worse than mine.

I don't care about stupid things anymore. Not that there were many, but now if someone judges me for sleeping as much as I do, I can just roll my eyes and move on. I only really care about spending as much time as I can with my husband. I want to just be happy and enjoy and value my body before it destroys itself. I just want to start living and doing the things I've always wanted to do. And I think that's the most important thing of all.

I doubt I've learned everything I'm supposed to yet, but hopefully it's been worthwhile for me to share what I do know. Cheers to another year of learning and a lifetime of adventure!

- Vanessa