Friday, August 9, 2013


Today is my birthday, well for another 40 minutes, which may or may not mean it will still be my birthday when I finish this blog post. 

Earlier this week I believe I promised some sappy birthday post and this may or may not turn into it. But this is the birthday post you're getting. So deal with it. Well, now that I'm formulating in my head, I'm pretty sure it's gonna be pretty sappy. 

So like basically, I know everyone dies. But on July 1st when I found out there is a  very real possibility that I may die quicker than I thought I was going to, or that if I didn't die quicker than I thought I was going to that pretty much every day (well not like each day, but like each month or year, or whatever) was going to be a little more painful, a little more functioning lost, a little less normal than my already a little less than normal life...I had a little depression, then I had a little wake up call. 

I started 'exercising' (read leg lifts and crunches in bed), I started eating better (for a while until this week), I started being happy, I cut drama out of my life. I made the choice to be happy. And, most importantly, I made the choice to follow my dreams. Ya know why, because I ain't dead yet. 

Many with Pure Autonomic Failure, according to Vanderbilt University, live at least 20 years after initial onset of symptoms (and most live well beyond that with proper management of symptoms, this is not me saying I am dropping dead in 20 years, hence why I'm still following my dreams). 

Even if I do drop dead in 20 years, that is 20 years from now. What am I supposed to, pack up all my stuff, lay in my bed with my dog, my iPhone, and a calendar and start counting down the days...if that were the case I would be down to 19 years, 10 months, and 22 days since I was diagnosed...but who knows when I technically started displaying the exact symptoms. No one knows the day or the hour but my Lord. And that is not how I'm gonna spend my last 20 years for sure. Plus, who knows, I could step out in front of a bus tomorrow and this blog post could be for naught, right? No one knows. 3 years ago I sure didn't think I would be writing this blog post ever. I thought I was invincible. I thought I was going to be spending 30 years teaching those with disabilities, not the one being so disabled.

Anyways, all this is to say, that finding out so close to my birthday has made me really think about the value of a birthday. The meaning of a birthday. What it means to truly value life. To not want to waste what you are given. Even if you aren't able to do much. There is a plan for you if you are here. So I've spent the last month trying to focus on my plan, but it hasn't been easy. 

There's been a lot of reasons, but that's a different blog post. On to this blog post. 

I decided a couple weeks ago that I was going to do 28 Random Acts of Kindness for my birthday this year, which I am, I just couldn't do right now because I'm out of money in my bank account. But I am going to do it throughout the month (and do a blog on it). So you may be getting an act of kindness coming your way at some point this month :) This is one way I'm living and celebrating the value of life. I want to prove that life isn't about me, it's about others. Everyone can help someone no matter how big or small. 

But as we've gotten closer to my actual birthday, things have gone down hill fast.

 I've had a terrible, horrible, no good, very bad week. A lot of reasons, again for another blog post. But then, there were great things too. That helped me remember the value of my life and that I really am as ambitious that people keep telling me I am. 

See, it's always been this running joke that I'm kind of an over achiever. It's kind of been a joke that I've been a little type A. It's kind of been a joke that I'm a little ambitious. 

So the first great part of my birthday week, of course, would be getting a present from my best friend in the mail for my birthday (which she insisted I open right now and not wait til my birthday to open)...and part of it is a t-shirt from Under Armour that simply says "Ambitious". It's a running shirt. It is to wear to train for the half marathon that I will run/walk by the end of next year with my friend Beth. Because that might be considered a little ambitious for someone that can't stand up for 5 minutes without passing out, but it defines me on a deeper level too. 

Ambitious (adj): Having or showing a strong desire or determination to succeed.

Yeah, that might be me. I'm the person that can't give up no matter what you tell me. Seriously, it's not going to happen. You cannot tell me I am disabled, I'm just differently abled. I will find a way to do it, if I want to do it. It may not be the normal way to do it. But it will be a close second. It may take me 1.25 years instead of 3 months to train for a half marathon that I will most likely have to walk most of and will most likely have to stay in bed for a month afterwards at least because of dysautonomia, but I will do that. That's called ambition. 

Yesterday, I decided that I was going to coordinate one of the events for October's Dysautonomia Awareness Month on Campus, and raising money for Dysautonomia International. I'm hoping to get some help from some people in the program. Right now the plan is to do like a "Cupcake wars for a Cause". We are going to have people enter to bake their best cupcake in a timed setting with secret ingredients and then they will sell them during lunch and dinner and which ever team sells the most will win a gift card and all the money from the entry fee and the sold cupcakes will go to Dysautonomia International. 

Today, I woke up and went to my saline infusion. It took up like 4.5 hours. While I was at my infusion Beth came to visit me and she brought me chocolate and we declared (loudly) that I was not going to be sick on my birthday. So I decided that I was going to not not feel good for the rest of the day. 

I finished my infusion, went out to lunch with mom and some of her co-workers at Monical's and got some yummy gluten free pizza. Then I went to the chiropractor to fix my oh so broken back (again another blog post). Then I ran some errands and came home to take a nap, I needed to save those spoons for my party. 

Then we went to my aunt and uncle's house for a cookout and what was supposed to be a swim party, but it was raining and pretty late, so that part was left out. We stayed until almost 10 o'clock. I can't remember the last time I stayed out until almost 10 o'clock at night. That in itself was ambitious. 

I think I'm going to make my "theme" of this year 'Ambitious'. In this year, I will, God willing, finish my thesis, finish my last classes for dietetics school, start and finish my dietetics internship, maybe find a way to at least work maybe one day a week somewhere, train for a half marathon, learn to manage my pain, be a better me, and hopefully many, many more things. These are all very ambitious things for a 'normal' person, let alone a person with so many chronic illnesses. So bring it on year 28. Let's do this, I've never been stopped yet, and a little stupid disease and gonna stop me now, I gotta lot of living left to do! :) 

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