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.
I need to stress that Myasthenia is different for everyone. Just like everyone doesn’t present the same symptoms and weaknesses, not all of the same medicines for for everyone (just a bit of a bummer).
That being said, I have another video. I’m a little ambivalent about it, because it only has one account of Myasthenia…but, I’ll show it before I express my feelings towards it.
Myasthenia Gravis is an autoimmune/neuromuscular disease that results in extreme muscle weakness. It targets skeletal muscles: your arms, legs, fingers, toes, neck, eyes, face, lungs, anything that you move voluntarily. Your muscles get tired. So what? What exactly does that mean?
It means that you can’t move your muscles well. The motion isn’t quick and certainly isn’t strong. It’s as those you’re trying to lift weights that are 50 pounds too heavy for your strength. The only problem is that you’re not lifting anything but parts of your body. Imagine being so tired that you can’t physically move. Your body feels heavy and it takes effort to complete ordinary tasks.
That’s the best way I can explain it. Myasthenia, like any disease or disorder, affects people differently. Some muscles are more primarily targetted. So, I’m giving y’all some videos to show you what it can look like. Here’s video one. I’ll keep looking for good ones on youtube or elsewhere. This is a dog, before and after given a Tensilon test (the pup’s supposed to get better after given the medicine). Poor puppy.
Rocco Mediate. I’ll be honest, I don’t watch golf. I don’t like watching golf, it’s way too long for me. But, the US Open interests me this year because of this guy. He’s 45 years old and he’s never won a Major tournament. And, now, he’s tied with Tiger to win. I’d like to think that says a lot about his character and work ethic. He turned pro 23 years ago and, at an age of 45, he still isn’t giving up and is in contention. Against Tiger Woods. As in the number one rank in golf.
Mediate, on the other hand, is ranked 157th. What?
Yes I did. So I packed it up and brought it back to the crib.
I fail every time I jump into the pool. I have never felt so out of place in the water. It’s a weird. It doesn’t feel natural any more. I’m starting completely over. As in from scratch. I think it felt more natural when I was first starting to swim at the ripe age of 6.
Unfortunately, I don’t like failing. Failing is not in my agenda. So, right now, I have every inclination to give up. It’s too hard. I’m not seeing my work get me anywhere. But, I can’t do that because I want to win. I want to get past this. I want to get to the stage where I can push myself. Right now, I feel as though I’m just learning how to play the game. I’m impatient because I want to reach that I just want to be able to better myself, but I’m stuck in a place so far from average. My year off from any form of exercise resulted in such muscle atrophy and depletion, that I just really question their existence sometimes. I don’t recognize my body in the mirror. It’s very weird.
I’ve been told how hard it’ll be for me if I ever wanted to get back to the way I was prior to last summer. Hell, even prior to the Prednisone. I’m starting to see that, now. But, I like winning. I like proving people wrong. I like knowing that I defied odds and that I can be victorious, especially with so much against me.
I’m just frustrated because it’s not coming naturally. I can’t expect it to, but I’d like that to happen. So badly. I’ve said that after roughing it this past year, I can get through anything. I take that back. If I can do this, I can do anything.
Word on the street is that June is Myasthenia Gravis Awareness Month.
So, I did some research on it (my full-time temporary summer job has trained me well in my three days of work) to get verification and whatnot, since my job has made me suspicious of everything online that claims to be true. I found out some interesting things. First, I learned that the Duke doctor that my doctor speaks with a lot and speaks highly of is actually “a member of the Medical/Scientific Advisory Board of the Myasthenia Gravis Foundation of America…[and] internationally known as a MG clinical and research leader” (“The M.G. Rally”). How’s that for an MLA citation?
You probably don’t want to read about this for the fifty millionth time, but I’m making good progress. Before, I claimed that I didn’t want to be known for having this disease. I hid from it, refused to tell people about it or felt uncomfortable when it was brought up. But, now I really do feel more like this is just something that I am living with. Just another obstacle, quite literally (if that). It’s been a big part of my life, so it tends to come up in conversation- such as when people ask about school or anything else remotely related to this past year.
The reason I even mention this is because I openly discussed it with someone I just met at work. I was able to be really mature about it and act as though I’ve put it all behind me. Maybe I haven’t exactly put everything behind me since I don’t consider myself 100% (that’s the perfectionist in me), but I’m comfortable. I’m not longer ashamed or afraid of how people are going to react, though I’m sure I’ll probably turn into a hypocrite if my symptoms come back.
It’s a freeing feeling.
Things have felt a little tighter lately, muscle-wise. I think that it has a lot to do with the heat and my shrinking amount of sleep.
Leon Powe. Surprised? Me too. I thought for sure that it was going to be Coco Crisp for the Sox/Rays fight on Thursday (ha, not the best move but still funny). Or, possibly Paul Pierce for his return after absolutely destroying his knee. Or, Big Brown for winning the triple crown. But, the triple crown didn’t happen so I didn’t even need to worry about this one.
The Coco thing was going to be the winner until half time of the Celtics game. I love fights, even though I think they’re wicked stupid. But, his attitude was so nonchalant about it. I kept watching the fight over and over again.
My mood has been swinging like a pendulum these past couple of days.
I’m not constantly depressed about all of this crap, but there are times it gets to me. Such as, for example, when I can’t fit into the shorts that I bought last summer. I don’t want to buy new clothes, because I don’t want to have to face the reality of this. Even though I am definitely aware. I just don’t like the fact that all of these changes have been completely out of my control (stupid drugs).
But, there’s nothing better to pull me out of a one of these funks and get my mind off of my worries like a nice, competitive baseball game. No, but really. There’s something about baseball that’s comforting…maybe that I’ve known it for so long. It’s the one real constant that I can count on being there for me. It’ll break your heart, but you’ll always come back for more. And, I’m not gonna get into it. Too much nonsense that just doesn’t need to be said. The end.
And, I think I’ll leave you with a little Brad Paisley to sum up everything:
And oh, you got so much going for you, going right
But I know at 17, it's hard to see past Friday night
Good night, sleep tight, don’t let the bed bugs bite.
Posted by Little Miss Greedy 
Posted by Little Miss Greedy 
Posted by Little Miss Greedy 
Rocco Mediate. I’ll be honest, I don’t watch golf. I don’t like watching golf, it’s way too long for me. But, the US Open interests me this year because of this guy. He’s 45 years old and he’s never won a Major tournament. And, now, he’s tied with Tiger to win. I’d like to think that says a lot about his character and work ethic. He turned pro 23 years ago and, at an age of 45, he still isn’t giving up and is in contention. Against Tiger Woods. As in the number one rank in golf.
The Girl Who Loved…