A Little Bit Longer And I’ll Be Fine.

All this time goes by, still no reason why
A little bit longer and I’ll be fine
Waitin’ on a cure, but none of them are sure
A little bit longer and I’ll be fine

It’s just one of those days.

I Can Put You In The Log Cabin Somewhere In Aspen

I finished a task!!! And, it’s about time!

I wrote a letter to myself that I won’t read until the 1001 days are up.  I think that means the day after, since I have until April 29th to finish it?  Uh, I need to figure that out.  In the letter, I basically just outlined my reason for electing to do the 101 in 1001 and how I hoped this would help me grow.  Simple stuff, really.

Aside from that, things have been keeping on.  Lots of ups and downs, not necessarily with me but with life in general…especially where I live.  I feel as though there have been so many young deaths recently around here.  You never think that anything bad is going to happen to the people that you know.  You know, the good kids-the ones that have so much life ahead of them, so much to look forward to.  The best kids.  The ones with the infectious spirits and best attitudes.  It’s surreal.  These types of things shouldn’t happen to people so young, but not everything works out the way they should.  You never know when something that can jeopardize…anything…can show up, so what can you do?  Live and love unconditionally.  No regrets.  Do what makes you happy and I think that you’ll find that you’ll make others happy in return.  It’s contagious.

Yikes.  The whole thing is terribly sad.  I just wish it wasn’t so.  Sorry for the ambiguity, I just don’t know how much I really want to elaborate.  But, anyways, I’m going to keep chasing my 101 in 1001 list.

Why Not Take A Star From The Sky?

I’ve come to the conclusion that if I can swim in college, anyone can.

I have no muscle strength.  I am not conditioned.  And, I get my butt kicked by younger kids every time I step in the water.  It’s kind of ridiculous.  I’m not sure why, but I don’t really see any reason to give up.  I like this because I have a chance to work for something, even if I feel like quitting every stroke of the way.

Speaking of working towards something.  I was going to wait to mention this until I finished the list, but I accomplished on of the things last week without meaning to.  I decided to make a list of 101 things to accomplish in 1001 days.  I stumbled upon the idea somewhere online.  Instead of doing something like a New Years Resolution (which, never really works), you have a list of things that you’d like to accomplish…with a feasible deadline.  These goals/tasks/whatever aren’t necessarily easy.  They stretch you a little and challenge you.  I like being motivated and I like lists, so why wouldn’t I love doing this.  I’m so excited to be focused and do these things. I think that chasing these goals will toughen me up, and I definitely need that.  I have no street smarts, in a sense.

So, here’s my list:

Days Pass Like Water Through My Hands

Let these miles catch me if they can.  I don’t give a damn, I need you.

Shark week. Shark week. Shark week.  Normally, during this time of year, I’m away for my brother’s baseball Nationals and I fall asleep to shark week.  Probably the best week of the year.  But, no more AAU this year; it has been substituted by weekly trips to take pictures of collegiate summer baseball.

Not a bad exchange, if you ask me.  It’s been a nice getaway every week.  During the week, I go to work, try to motivate myself to swim (or at least run) , chill out at home, go to bed.  And, sometimes even see other people.  But, come the weekend, I can finally get away.  I escape to a place where no one knows me or my story and my life revolves around one of the Seven Wonders of my life: baseball.  I watch pitchers bring the heat and hit their spots.  I watch batters drive the ball to the opposite field and lay down the bunt.  I watch fielders dive, stop, and turn plays.  But, there’s more.  I also watch pitchers self-destruct and struggle to win a mental battle.  I also watch hitters try to make contact with the ball as they adjust to wood.  I also watch error after error as fielders bobble the ball or eagerly overthrow the ball.

Think Of It As Personality Dialysis.

This entire post the potential to sound incredibly pretentious. I promise you that it’s not meant to come off with any pompous overtones, though. Pinky swear.

I definitely realized that having some form of chronic whatever would not sit well with many people. I’m thinking specifically in terms of MG, since that’s what I am dealing with, but just based on interacting with certain people and listening to them talk about how much they hate their life because they’re stuck home after graduating, hating they’re job…yeah, I admit to making this assumption about them. I can’t picture them exactly loving their lives when they look disfigured and it can’t be fixed for an extended period of time. I can’t see them being humbled by this even remotely; all I envision is continuous whining and unhappiness about how they want it to be fixed. Especially when they so harshly condemn other people for their “inadequacies.” Actually, I just don’t know how they’d respond to myasthenia. I really don’t.

But, at the same time, I can’t imagine taking it immaturely. After all, I can’t change what’s happened. I can only change how I look at it and what I can take from it. It’s interesting how these things happen to those who can deal with them. I love my life. Well, it’s not ideal but I’d like to think that I appreciate more because of everything I’ve gone through. I’ve met some incredible people and I’ve learned a lot about myself. Sure, I get caught up in teenage strife and hate this stupid condition because it impairs me…I’m not perfect. But, I’d rather not whine about it. Okay, maybe I’ll just whine about it to my parents and on here. I feel like I complain too much, but I like how everything has worked out recently. I feel less like I have these chains binding me and I’m free to be the person that I want to be without the mark of “Myasthenic” branded on me. Not literally, because those scars aren’t going anywhere any time soon. But you know what I mean.

It’s Just A Rollercoaster, Anyway.

Be careful what you wish for.

When I was younger, I wanted thinner hair.  It’s not that mine was necessarily thick, I just thought that it would look better if it was just a little thinner.

Well.  My wish has been granted, but at a bit of a cost.  It’s definitely thinner, but it’s like it has a mind of its own.  Which means that hairline on my forehead keeps receding.  And that current thickness is about to deplete.  I knew this was happening.  I tried taking Biotin, then some other ridiculously expensive hair supplement…but, to no avail.

I really started noticing this last week.  I went to the mall with a bunch of my friends and, well, I officially hate malls.  Malls are a big no-no for people who don’t or don’t like to look in mirrors.  When we got to the mall, my hair was wet that’s when i really realized that there is a huge difference in hair (volume, hairline, etc etc) between me and the girls that I was with.  When did my hair get so bad?  I watched it fall out, but never saw it get this bad.  I put my hair up now when its wet and I’m convinced that it’s not there.  Yikes.

So, that puts me in a predicament.  What on Earth do I do now with medicine.  Before, I figured it wouldn’t be that bad to just combine something with the CellCept because it’s working minus the facial muscles.  That way I could have my little boost to perk that smile right back up.  But, if hair loss is really this big of a factor with the CellCept, I’m not sure if I really want to stay on it.  Then again, I’m also a little torn because I don’t want to miss work (I need money!) and I don’t want to give up taking pictures on weekends.

Hmm.  Let’s just get this fixed.  That would be pleasant.

Don’t Go Around Breaking Young Girls’ Hearts

I got everything I asked for.  I asked and my doctor offered me ways to improve my symptoms.  They are as follows:

1. 5-10mg burst of Prednisone
2. Plasmapheresis
3. Add on/gradually switch to rituximab
4. Cyclosporin

I vote that 1 and 4 are out of the picture.  So, there leaves me exactly in the position that I wanted to be in.  Except.  Except, I’m much happier right now than I ever anticipated.  I figured that, were these options presented, I could just get it over with this summer and be perfect for the fall.  But, I’m at a state where I don’t want to put my life on hold again and only be able to wash my hair in the sink for the next month.  I don’t want to give up my weekends of going to take pictures.  I love doing that and I haven’t been this happy since probably before I got diagnosed.  Or, it seems that way at least.  I don’t want medication to throw me for another whirlwind.  I’m not ready to do that again.  Plus, I’m just starting to get my stroke back.  Swimming is progressing and I don’t want to lose everything I’ve built up (though, admittedly, I don’t feel like it’s much).

I need to keep having fun.  I have loved this summer and what it has had to offer so far.  What do you do when you everything you have ever asked for and truly desired is in your reach, but suddenly aren’t so sure if you should grasp it?

Your Hair, Your Eyes, Your Old Levis

Clearly, I was fooling myself when I thought that I could keep up with a new highlight ever week.  I also never anticipated being busy this summer.  So, there you go.  I’m going to stop…mention something I find noteworthy every once in a while.  That kind of deal.

I was thinking today about when I first came down with Myasthenia.  I’m pretty sure that my saving grace was that I was in pretty decent shape before I started getting weak.  My legs and arms kept getting tested, but I’d pass with flying colors- I’d show virtually no symptoms of Myasthenia, though I felt weak as ever.  I really think that was because I was weak in comparison to how I was before that, but in the realm of myasthenic patients, I was healthy as could be.  It’s really too bad that no comparison could be made between before and after.

More is going on, but I gots ta pack up and go!  I’ve been loving this summer.  I don’t think that I could be much happier with it.  It’s everything I could have asked for, really.  And, I wish everyone that stumbles across this a HAPPY 4TH OF JULY tomorrow!  …I spent way too much time doing that.

I Don’t Know How To Make A Feeling Stop.

I know I haven’t written anything lately, I’ve been busy and there’s been too much on my mind.  I said that for my own reassurance.  I don’t have a lot of time on my hands right now to say everything that I’d like to, but I did want to mention one thing:

Please, don’t ever give up on yourself.  It’s so easy to convince yourself that you aren’t good enough or that something is impossible.  That’s taking the easy way out.  That’s giving up.  If you want something, go after it.  Make yourself vulnerable.  Let yourself fail.  Put everything that you have on the line and don’t take no for an answer.  Things aren’t going to fall into place just the way that you want them to.  It doesn’t work like that.  You are going to become uncomfortable in your pursuit of accomplishing your goals.  You’re going to want to give in and succumb to failure.  But if you want it, and I mean really want it and are willing to fight for it, it will happen.  Not right away, let’s be serious.  All good things take time.  But, there is no reason to give up because you don’t think that you’re good enough.  You want to be great?  Then, BE great.  You have talent.  Use it.  Make something of yourself.  Do if for yourself.  This is your battle to win.

This is all cliche and has been said before, but I’ve been there.  I’m there now.  And, I’m trying to fight it.  You need to fight it too.  You have something to prove, something to offer.  You just need to believe it.

That’s When I Love You.

I’d say that, for the most part, I’ve done a good job accepting everything that’s been dealt to me. I have my 18-year-old break down moments, but what do you expect…I’m 18 years old. I understand and accept that this isn’t going to change at a snap of anyone’s fingers. As much as I’d like that to happen, I’m okay with that. I like to think of it as a nice, challenging hurdle for me. I’m proud of what I do day to day and have periods where this doesn’t cross my mind.

I don’t want to accept it and just let it take over. I want to keep fighting it. I feel as though accepting the condition is almost to embrace it and let it have it’s way. Well, it’s not going to. I like winning and this is a game that I refuse to lose. I am so hellbent and determined to regain the reigns of my youth and not have my life be dictated by my limitations. I have no limitations, who are you kidding.