I've Been Left Behind

I feel bad. I've kinda been neglecting things lately. Like my blog. I've been feeling lost lately. I don't know if its the fact that I don't know where I am going to be doing my internship yet, or even if I will be accepted for one. And I've been awfully lonely lately. My mom lives 2.5 hours away. My best friends live 3 hours away. Normally that wouldn't be a problem, but I work on the weekends, so it would be hard to make plans to visit, when the week days would be inconvenient for them. I do have friends here, but hardly any I could call my best friends, and most of them aren't around that often. There is Jess, but she is usually busy with her boyfriend, or something else. Then there is Ryan, who was my best friend, before he broke up with me. I not only lost my first love, but my best friend. I'm lost. I don't feel a need to be here anymore. I keep trying to find roots in other people, trying to find a way to ground myself. But there is nothing there. I try to make connections with people around me, but it just doesn't click, but not for a lack of trying. I guess I just tend to go after the emotionally unavailable type. But it's funny, because for the longest time, I was the one who made myself unavailable. I was always rejecting people. But now the tables have been turned. I tell everyone I'm not looking for anything serious with guys, but deep down, I want something serious. Even though Ryan and I broke up 4 months ago, I want to find that special someone. I want to settle down. But its kind of hard when I know I will just have to pick up and move again in 6 months. And my biggest thought right now, is the fact that I want a baby. I want a kid. But this isn't anything new. Ever since I found out at age 14, that I can't have kids, its all I can ever think about. You never know what you had til its gone. Even though I never had the option, I wish nothing more than to have that option. I don't know. I just don't know where to turn. I've been right, I've been left, I've been wrong, I've been left behind, I've been up but mostly down.

My Heart Is On Rewind

It's been about a month and a half since Ryan and I broke up. We hadn't really talked much since. We did text a little bit to discuss when we were going to meet up again. We had set a day, and then he told me some bad news. He had gone to the ER a couple weeks before. He was having neck and back pain, as well as numbness in his hands, legs and feet. He got a ct scan, and the results came back abnormal. They found spots on his brain. They decided to run more tests, because they said it could just be shadows. But it could also be multiple sclerosis or even tumors. I was heart broken when I found out. I thought I was getting over him. But when I heard the news, my heart went back to square one. Or maybe I wasn't truly over him. All I can think about is being with him. I'm so scared for him. So I've decided to travel on saturday to see him. I'm trying not think about getting back with him. At this point I feel I just need to be there for him. But thinking about the possibility that it could be life threatening, has got me really questioning all of this. Do I really want to be without him? Because this news has shaken something up in me, and I am just as confused as ever. I don't know exactly what I want. I just know I want him to be ok, and for him to be in my life, one way or another. I'm just really worried :(

Life's Not So Common Questions

So with having CAIS, there is a lot of thoughts that run through my head. I've NEVER really questioned my identity as being a girl. I have NEVER seen myself as male. And I have NEVER seen myself liking girls. My mind definitely developed female, and identify as being straight in the fact that I am a girl who like guys. But there are just so many thoughts that come with this.

I want to know how I went 14 years without anyone ever noticing that I was different. I was very sick as a girl, and had a lot of blood-work done. How did the doctors never see elevated testosterone levels? How did they not catch that?

I think I am most scared to tell people about my condition because of the stigma that goes along with it. Being a "hermaphrodite". A hermaphrodite is explained as someone who expresses both male and female reproductive organs. The female reproductive organs include the vagina, uterus and ovaries. I never had a uterus or ovaries. I do have a vagina, but it's not a real one. It's blind ending. It's basically just a pouch. The male reproductive organs include the penis and testes. Usually those are located on the outside of the body. It's weird to say, but technically I had testes, they were just undescended. My sex chromosomes originally told my gonads to develop into testes, but because of the mutation on my X chromosome, they didn't develop into anything further than that. So how could i be considered a hermaphrodite, when I barely had any sexual organs. I did no have ovaries, uterus, cervix, penis, nothing. If we have to be called anything at all, I guess intersex would be better.

Another thing that really gets me thinking is the fact that I have CAIS because of a mutation. Because of that one mutation on my X chromosome, it changed my life forever. To start with, if I would have gotten an X chromosome from my dad (instead of the Y, which is what I got), I would have been a completely normal girl. If I would have gotten my mom's other X chromosome, I would have been a completely normal male. It's just crazy to think that because of that one mutation on my one chromosome, it completely changed my life. If it wouldn't have been for that, I would have grown up male, probably played baseball and football, and who knows what else.

I think I have mentioned it before, but I'm going to talk about it again. With me identifying as female, and liking guys, that makes me straight. But if you were to look at me from a genetic standpoint, I would be a male who likes guys, which would make me gay? But if I liked girls, with being considered a girl, that would make me gay as well. But if I was viewed genetically as a male, and like girls, then I would be straight.

On another note, I am in a class called Natural Science Seminar. To graduate from my college with a science degree, you have to do a senior research project, unless you are getting a degree in Medical Technology (which is what I am majoring in). But I still have to take the class, which prepares you for your project. So I had to come up with a hypothetical experiment. I decided to use my condition as a basis for my project. It would be to look at my DNA, and see where the mutation occurred on my X chromosome. I would also be looking at my mom's DNA in order to determine whether or not it was genetically passed down. What I did not think about was the fact that I would actually have to present my idea to my class. I have to admit that I am pretty apprehensive about publicly talking about this (even though my class only has about 18 people, and instead of using my name, its just patient X). But I also think that it will be good for me. Because eventually I want to be able to tell anyone and everyone about my condition, and maybe this will be my first step in getting comfortable with it.

Where Does The Time Go?

Wow, it has been a long time since I have blogged. Well a little update. I started my senior year of volleyball this past week. We had to run 4 quarter mile sprints with a cumulative time under 6:20. I ran it in 6:23 :( I was sooooo close!! We just finished our preseason camp, and man am I tired! But its been good so far. We have a great team, great talent, and I can't wait to see what our team will be able to accomplish this year.

On another note. Ryan and I are on a break :( Things haven't been going good lately. We are really good when we are actually together, but that is usually only once a week. so we will be on a break until we can get some things figured out. I hope that it doesn't take long, because I miss him really bad.

Some random thoughts about CAIS...
...I think its crazy, mainly because i'm only 22, and I have to consider getting lubrication
...I find it crazy that my doctors have only given me 2 options for my hormone replacement therapy, when there are many different options out there for me
...A very random thought, but something that struck my interest. Lets say very much into the future, if doctors were looking at my skeleton, what would they discover about me? Would my bones say that I am male or female?

Statistically, I Shouldn't Be The Only One

I've been thinking a lot about the statistics behind my CAIS. We believe that my condition was passed down genetically, instead of it being a random mutation. If that is the case, that means my grandma would have to be a carrier as well. All carriers have a 1:4 chance of passing the mutation down to their children, and 1:4 chance of their children being a carrier. My grandma had 13 kids, so genetically, wouldn't it make sense that she would have had about 3 kids with AIS? And 3 kinds who were carriers of AIS? So even if my some miracle none of my mom's siblings have AIS, there is still a 12.5% chance that my cousins would have it. I know I have at least 20 first cousins, so that means statistically there should be 2.5 of us. But I don't know of anyone in my family. And on top of my first cousins, I have a crap ton of 2nd cousins. So where are all of my relatives with AIS?!?!

A Video To Replace My Words

So I recently came across a video online dedicated to women like me. I have yet to watch the entire thing, mainly because I started watching it about 10 minutes before Pretty Little Liars came on, but I just wanted to share it. You can watch it at...

http://www.megavideo.com/?d=A04WT7XU

Is This Working?

Wow. It has been a while since I have written anything. I don't know why, maybe its because I feel like this is just a waste. I was hoping that it would help someone, someone like me. I guess I will give it some more time.

I really want to meet someone in person who has CAIS, or any kind of AIS really. It would be so comforting to be able to openly talk to someone about everything, and not have to worry about them not understanding, or having to explain myself. A lot of people in my life know now that I have this, but I don't feel like they can understand what it is like to go through this. I think the best example I can think of is the hormone replacement I have to go through. I'm on an estrogen patch, that isn't exactly the most friendly, but its the best option i've come across so far. The problem is that it not only irritates my skin, but it also makes me feel nauseous in the morning. So I often find myself going weeks without using it. My mom asks me quite often if I've been changing it, but I don't always do it. I feel like its not me. I kind of wish we would have waited to take my gonads out. Mainly because it was a lot less of a hassle back when I had them. I didn't have to worry about estrogen. And I don't know if this is a direct correlation, but I feel like getting them removed made me gain weight, because of the estrogen.