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January 8, 2014 / Ang


Oh hey, there.

I started this blog over the summer with the main task of just sharing anything I wanted to – mainly about my life, chronic illness, and surviving this struggle (such as the diagnostic processes and path to effective treatments). I tried to share about who I am then, from posting my story, fun facts about myself, and an about me page. A few things have changed since then, though, so allow me to reintroduce myself.

Hi. I still like to put on this false confidence thing from time to time so let me start with: I’m awesome. Okay, now that that’s out of the way it’s time to share more details. I’ve taken to calling my life the hot mess express just because my life is pretty crazy. Sometimes I feel like I’m getting in way over my head and I’m not sure how to fix that.  

I really want to become a teacher. I love working with students, and I’m actually about to start tutoring a college student when this semester starts – not just the high school kids I volunteer to tutor with the Upward Bound Math and Science program. I’m so excited about this because it’s going to make me feel like more of a productive member of society. I’m just not entirely sure if I’m going to be able to teach, and I feel like I’m in the same tizzy as senior year of high school when I have to think about my interests and my talents and try to choose something to do with my life. If I don’t finish out my undergraduate studies as an education major I’m still a little clueless as to what I’m going to major in. I have an idea for graduate school, though, I want to study sociology of education because it turns out that I think like a sociologist in my daily life and how better to take advantage of that and my interest in education than to combine them?

I dance. It’s one of my resolutions to dance more, actually. I love my studio, even if I feel awkward and shy around some of my fellow dancers. There is nothing better than a great dance though. You can feel the music, not just hear it, and there’s a connection with someone else and you just ROCK IT. I promise you that it is my favorite feeling in the world. Lately I haven’t had that feeling as much because I took a break from dance (against my will, I swear!) and now I still feel just a little awkward getting back on the floor like I’m missing leads (and I probably am, they continued to grow and develop as dancers while I turned into a couch potato). Eventually, though, I’m going to know what I’m doing and regain that natural high.

I’m a part of a group called “I Run 4 Michael;” and yes, it pained me to use the number 4. It’s a group where you share your accomplishments with a buddy who for whatever reason can’t be as physically active as you are and might need an inspiration. In exchange, your buddy acts as a coach. I wanted to get involved because I want to do something for someone else and I’ve been neglecting my volunteer work outside of UBMS lately, but also because this is a method of holding myself accountable for my physical activities – I have a wonderful little girl counting on me!

I still have Postural Orthostatic Tachycardia Syndrome (known from here on out as POTS), but we’ve decided that it’s probably secondary to a genetic kidney condition, Bartter’s. Bartter’s explains almost everything for me, aside from blood pooling and hypermobility which apparently strengthen my case for having some genetic issues causing my difficulties. I don’t really want to go see the geneticist right now, though, so I guess I’m counting on presenting the clinical picture as my diagnosis for the time being. As much as I counted on finally getting a diagnosis hoping that it would be the magical key to finding a cure: I’m incurable, we just have to work hard to keep up with managing my symptoms. It gets rough sometimes, knowing that I might always struggle to keep up instead of being the girl I used to be, but I just want to keep going.

I’ve been trying to find a job, but it’s hard to understand the nuances of employment with a disability so I’m worried about the interviews when they ask if I need any accommodations. I’ve also been putting in applications at various local establishments and been left in the lurch, so I feel almost unemployable at the moment. I swear I’m great, though. They wouldn’t ask me to come back to help with the kids if I wasn’t, would they?

I’m still passionate, I like to occasionally post my commentary on contemporary issues, and I can honestly say I’m not sure what I would do or who I would be without my best friend. He’s pretty much my rock.

I don’t know what else to say right now other than: Welcome! If you want to know anything else, please just comment or e-mail me and I promise I’ll get to it.


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