When September Ends

I started this year with a new found motivation. And this new found motivation is slowly fading to this dull feeling of apathy.
I honestly need more time in the day to do all the things I need to/want to. As much as I love being in the show, it's really adding a lot of stress at the moment, because I have to go straight to work after rehearsal most nights, and then I work until ten, and I get home and stay up until all my homework is done. And that's usually pretty late.
I know I'll get through it though, it's just these few months that are going to be tough. But there's another show that I can try out for coming up. Audition dates are literally three days after we close. At this point, I don't think I'd be able to do it. Do I want to? Of course. But with my health the way it is, and the fact that my grades are really important to me this year, I don't think I can have this hectic of a schedule for another three months after this show is over.

This month was a bunch of lasts all strung together. The start of my last year of highschool, the audition and the start of my last highschool musical, and my last homecoming week of highschool. It's all a little bittersweet, but emphasis on the sweet. I honestly wake up every day and think of how amazing it will be when June is finally here. But it's still frightening, because of the uncertainty of my future. I try to just take it one day at a time (and those of you who know me know how tough that is for me.)

In other news, I'm going to be starting a vlog soon on youtube. :) I'm going to be talking about life with a chronic illness, and how to stay positive in a time of crisis, with bits about my life in it too. I'm really excited about it, so I hope if you read my blog you'll watch it! right now I just have some videos of me singing on my Youtube account, but I'll link it at the end anyway. :)

Thanks fo reading! Lots of love.

Taylor May <3

@Maylor_Tay on Twitter
@tay_may on Instagram
http://www.youtube.com/user/TMaylor?feature=mhee

Chronic.

For the record, this one could get a little nasty, please know that I'm not mad at anyone, but at the situation I've been put in.
And that I am still trying to be positive when it comes down to it, I just need to rant for a second.
Okay, here we go.

If you want to judge me, go ahead, but you have no idea how hard I try. Some people say that what I'm going through really isn't that big of a deal, and I do try to make it seem that way. I don't want to make people feel sorry for me and I don't want to be defined by my illness. Every day I do my best to get up and put a smile on my face, and be strong for myself and for the people who care about me.

But today, I realized that no matter how strong I am, no matter how positive I am- though it makes things a little easier sometimes- I'll never be free from my disease. We talked to a Bone Marrow Transplant specialist today at Children's Hospital of Wisconsin in Milwaukee, and he filled in the details I was fuzzy about with a transplant. Was I expecting it to be an easy fix? No. Don't get me wrong, I know full well that any type of transplant is no walk in the park, but I thought maybe it could be something concrete. Instead, I'm told there is a very high chance that I would end up with a different, vicious chronic illness, called GVHD, or Graft Vs Host Disease, or that I wouldn't make it through the transplant.

And these things were things I knew, too. But it just hit me today what this actually means. Why would I chance going through that entire ordeal just to be stuck back in the same situation, with a disease I can't get rid of for the rest of forever? When, lets be honest, as long as the pills are working I should be fine.

That's what I'm told at least. But what no one can tell me is what these medications, usually given to adults, considering this is an adult disease, are going to do to me in the long run. Medical science hasn't gotten that far yet. So that's no fun. Well, that, and the fact that they're so expensive, pretty much no Pharmacy wants to carry them. We have to get them sent to us special from the Children's Pharmacy or something like that. How the hell am I going to pay for this medication when I'm on my own? Most people who get this are in thier fifties and sixties, with thier lives all planned already and set into motion, with familes already, careers already. I don't have that luxury.

And I understand that no one has control over their lives, and that we're all subject to fate or God's plan for us, or whatever, but I still sit here and think about the fact that I don't even know where I'll be in a yar, let alone five, and I can't do anything about it, and I didn't do anything for my life to be this way. And I know it's not fair, and that no one's life is. But COME on. This is all so overwhelming right now, I can't breathe sometimes.

And I try so hard not to show it, because I really don't want people to feel bad for me, or compare their struggles to mine. Because we all are going through something. But I hear such stupid bullshit, and rumors about what people have said about me in the past, and I just can't stand it. All I want to do is love people. I don't want sympathy, or for this disease to be the first thing people think of when they see me.

All I want is the answers no one can give me. But, for now, I guess I'll just sit and take in the fact that chronic is pretty much the same thing as forever and ever.

Screw this.

I love you. I'm sorry.
Taylor May.

@Maylor_Tay on Twitter
@tay_may on Instagram