I'm Back!

WOW! It has been a very long time since I've been on here. Almost 5 years to be exact! To be honest, after a while, I kind of forgot about this blog. It wasn't until just recently that I brought myself back into the blog scene, but for different reasons this time. I started a new blog called "Fibro Spoon Warrior". That's right, Fibro as in Fibromyalgia. On top of my rare and totally somewhat awesome diagnosis of Complete Androgen Insensitivity Syndrome, I can now add Fibromyalgia! I'll talk about this a little later on this blog, but if you are interested, check it out! It has really altered my life this past year. Nothing is the same for me anymore.

But now for catching up!

Lets see, I last wrote in December 2011. So, we will start there. I had just been dumped by that guy I claimed to be "Matched to be" with hahaha. Yea that didn't go so great. I began battling depression, as well as my first experience with mono. Man did that suck! In May 2012 I started my internship at another university, where I was studying to become a Medical Technologist. I began my clinical rotations at a local hospital in January 2013, and by June, I had a full time job in my career field! Life was AMAZING! I was so happy. I adopted my dog Teddy, I was done with school, and had started my career.

Then I decided to go to the national AIS convention. It was the middle of July 2013, in Boston. My mom decided to come with me as support, so I looked at it as a nice vacation with my favorite person in the world. I hated the convention. I was not ready, nor prepared for the emotional roller-coaster I was on. I cried every single day. I was having anxiety attacks, including one in my sleep (this is very significant, and I will explain why down further). Apparently, even though I had been dealing with this diagnosis for 8 years, I had not fully explored my emotional feelings about it. I had never gotten around to embracing it. I guess I just knew the facts, and hid it all under a smile. But when I started meeting all these wonderful people, and hearing all their stories, everything that I had buried was coming to surface. We were in small groups and people were talking about their own experiences, and I was dreading my turn. It finally got around to me, and I tried talking. I tried acting like I did with my friends/family when we would talk about my condition. But all I could do was cry. And not just a soft cry, I mean balling my fucking eyes out. All I could manage to talk about were how I had started this blog, and some people took my photos from it, and had conversations about them on other websites. They were trying to decide whether or not I looked like a boy. I was mortified when I had found it. And of all the stories, good and bad, that I could have chosen, I told that one. I was a mess. I realized I had not come to terms with my condition. Even after 8 years of living it, I was not ready for that convention center. And I'm not sure I ever will be ready. At least not in that big of a scenario. Maybe just a small gathering, I could probably handle that.

The day after we got back from Boston, which was a 12 hour car ride, I got the worst phone call of my life so far. It was my mom, and I could tell her voice was a little off. She told me that my dad was dead. That he had committed suicide. All that happiness I had found, was gone. I became an empty shell. My dad and I had a strained relationship. He had a lot of psychological demons, as well as physical injuries, that he chose to medicate himself with narcotics. He became addicted. I tried countless times to help, but he kept choosing the pain killers over his own daughter. My dad died alone. He had gotten sober, and we met up to talk. It was the most emotional 2 hours I had ever spent with him. I was so angry with him for wreaking havoc on my childhood. But we left on decent terms, with the intentions of getting together again. Until he called a few months later, asking for help to get money. Same story I always heard. That was the last time I ever talked to my dad. I hung up the phone on him. He shot himself in the head about a year later. It shattered my world. I always thought we had all the time in the world to reconnect. But with being sober, his demons were to strong, and he was too weak. The following couple years, I just kind of went through the motions. I called it "being on autopilot".

During my time in "autopilot", I bought a house. Mainly because I now had all of my dads possessions that I was unable to part with, as well has his dog Jasmine. So I now had 2 dogs, and a whole bunch of stuff, and needed a place to set roots. I remodeled this house. New floors, windows, painted the entire house, and completely remodeled the bathroom. All while on "autopilot". Looking back, I don't know how I managed to get through all that, but I did. I also was able to pass my certification exam, which is preferred in my field. So I am now a Certified Medical Technologist, and I even have fancy letters after my name, MLS(ASCP)CM.

I am now in a great relationship with my boyfriend David. We have been together since October 2015. He has been truly amazing. We initially bonded over working out. We met online, and had read on my profile that I did crossfit, and we began talking about the workouts. Then he introduced me to rock climbing. We went on kayak adventures. And we both started running. Our relationship is definitely surrounded by doing athletic activities. But now our relationship is evolving, because athletics are no longer easy for me anymore. As I said before, I've been diagnosed with Fibromyalgia. It has made it difficult to maintain my athletic level I once had. Some days I struggle getting through the work day. Other days, I have so much energy, and I can do so much. But those days have become more and more less frequent.

Well, that gives a lil info about the past 5 years. I'll be sure to update this more frequently!

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