Today

Today I feel like shit. My pain level is elevated and it is hard to push through the pain when it is this high. I have been to physical therapy, iced my neck, taken my meds, and used my TENS unit this morning - but, my head is driving me crazy. I do not have time for pain today! My mother, son and I leave for NYC tomorrow morning to go to the Chiari Institute for my eighth trip in the last five years. I need to pack, clean, bake, and go to a meeting at Logan's school. . . I don't think it will all happen (; So, the feeling of a hot poker trying to push my left eye out, the pressure building at the base of my skull, and the constant feeling that I need to puke are really making it hard for me today.
This may be the most frustrating part of my disorders (outside of the constant pain)- I have no idea when or where I will feel so bad I cannot function. I may feel great one moment, and then start to feel a slight twinge of pain rising. Next thing I know I'm feeling like shit and what I thought I'd be doing has to wait. (FYI: when I say "feeling great" I mean that my pain level is a 1-3, and I'm not ready to hurl) I appreciate the fact that I can walk, and be take care of my son everyday, but sometimes it all just pisses me off. I want to be able to plan something, and know I will be able to follow through. I want to wake up and not have my first thought be, "my f#%*ing head hurts." So, today I feel like shit and I'm a little mad about it. I think thats okay - as long as I let it go and remember all the reasons my life is amazing.
I am ready to go see my docs and check in. I wish thats all it is - a check in appointment, but I will also have MRI's to look at why my leg hurts at the surgical site for my detether, why I'm vomiting regularly again, and a few other things that have been going on. I'm not ready to hear what they have to say. If they say, "This is all due to permanent nerve damage. This is as good as it gets" that kind of sucks. But, if they say, "we found something, you need another procedure" well, that sucks too. I guess I'll just have to wait and see.
Wish us luck, did I mention we're driving? Oh yes - my mother, six year old, and I are driving from Indy to NYC, Long Island actually. We are guessing 12-14 hours with stops(: I'll post after my appointment on Friday.

What choice do I have?

I cannot tell you how many times someone says to me, "You have an amazing attitude for everything you've been through!" or "All of that and you seem so happy." What am I supposed to do - curl up in the fetal position and wait to die. I appreciate the encouragement, don't get me wrong, but what choice do I really have?
This is how I see it: I could wake up every morning, in pain/nauseous, and hate my life, be pissed at the world and never leave my bed. Or I can wake up in the morning to a day filled with the love of my family, the support of my friends, and choose to be happy about my life - as is. I get to stand up on my own two feet everyday. I can spend my days caring for my son, and many other things that more disabled people than I could only dream of - there are soooo many people out there much worse off than me. So, I don't really see the choice. Its up to me to see the good in my life or otherwise I would be pretty depressed most days. There are days I am not happy with life, or cannot get out of bed due to pain, but every time my son smiles or my husband gives me a kiss I remember that I am one of the lucky ones.
I truly believe everything happens for a reason. I don't know why I have spent my life in pain, dealing with a wide range of symptoms, or had multiple surgeries - but, I find meaning in it all. In some ways all this has helped me to appreciate the smaller things, the good days, and the little moments of true happiness in my life.
Next time you wake up in a bad mood, or you're sitting traffic pissed off at driver in front of you - remember there is someone out there having a much worse moment than you. Take the time to realize happiness is what we make of it. If you see you're life in a negative way, happiness will be hard to find.