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.

A Hello From A While Ago

So I realize its been a while since I have blogged. I don't know, things have just been a mix of emotions lately. So this isn't really going to be about much, other than whats been going on. I promise to have one of the regular blogs up by this week.

Its almost the end of the semester here. We have about 2 weeks left of classes, and then a week of finals. On my to do list before I am done with the semester is to complete 3 lab finals, 1 paper, 4 lecture exams, and 3 final exams. Including labs, thats a total of 10 exams in the next 3 1/2 weeks!

Ryan's birthday is on friday. I had a nice surprise for him planned out, but it came in the mail, and it was a surprise to me! And lucky for me its non refundable. So i'm going to give it to him anyways, and probably take him to dinner at P.F. Changs or something like that. And then on Sunday, we will be celebrating our 6 month. I know to a lot of you, 6 months isn't really anything big. But to me, this is the first time that I have ever been with a guy for that long. So I'm pretty stoked. We will probably end up just doing dinner and a movie.

I finally found an apartment! I've been searching for a while now. I have to live by myself, because I don't know how long I will be living in Defiance. It may just be until December (If thats the case then I would be moving in with Ryan), or it could be until next May (when I start my 12 month internship). But I found a 1 bedroom, 1 bathroom that is right down town and is above a little store. I have a big bedroom, with a big living room. The kitchen is small enough for one, but is adorable. The only downfall is that there is no washer or dryer, and no set parking, but for the price, I am ok with that.

Well thats about all for now. Like I said, I will hopefully have an actual blog posted by the end of the week. Now, to just decide what to write about!

zì xìn

So I have a tattoo that I got my freshman year of college. It was my first tattoo, and it was just after my season from hell was over. I had been thinking about this tattoo for a while, and how I wanted to go about it. I wanted to incorporate the idea of "self-confidence" into my design. I had been struggling in my life. Between my rocky relationship with my dad, living 11 hours from home in Iowa, playing on a team that I hated (except for the girls on my team), and still coping with my condition. I cried home every other day on the phone to my mom. I was miserable. I needed some confidence in myself. So I got a tattoo that said "self-confidence" in Chinese. (We had a Chinese girl on the team, who made sure the design I picked out was accurate, and didn't say something else). That is what "zì xìn" means, self-confidence.

I decided on the tattoo that is in the picture above. I know it doesn't read up to down like normal, I just thought it worked better this way. I had it put across my lower abdomen, on the right side. I thought that getting it on my body permanently, it would serve as a constant reminder to keep my head up, and not get down on myself. I would like to say it has worked, but I don't know if it has really. I don't regret it at all, I just wished it would have done more for me I guess.

But no matter what happens, I still struggle. I am very self conscious about myself. When I look in the mirror, I immediately check to see if I see any "masculine" features. I check to see whether or not I look like a girl. In that mirror, I see my body. I had lost almost 20 pounds since last summer. But with our volleyball workouts, and all our weight lifting, I have been putting on weight. I don't think it's been bad weight, because I have still been eating just about the same as I was when I was loosing weight. But when I step on that scale and I see the number higher than what i've been working towards, it hurts. 4 years ago, I weighed over 25 pounds less than what I do now. That means last summer, I weighed about 40 pounds more than I did my senior year of high school. Even though I have lost weight, and I have gained muscle mass, I still feel bad about myself. I want to be skinny again. The other thing I see when I look in the mirror is the color of my skin, or lack of color. I am pretty pale. I think its definitely a combination of things, but I think its mainly because of my heritage (my family is mostly Irish, and the rest is pretty much German). My whole family is pretty pale. But I'm not comfortable with it. Everyone always makes comments. I have found myself making comments first, so that I don't have to hear the clever comment the next person is going to make. Beating them to the punch. I try to be ok with being pale, telling myself there is nothing to e ashamed of. But in the world we live in now, if you are not tan and skinny, you don't completely "fit in". I try not to feel the urge to tan, because I am scared of getting cancer. Between having the gonads being removed (which given time, could have turned malignant), and having a tumor on my salivary gland (in my neck, which was benign), I don't want to get any other kind of cancer, like skin cancer. But I honestly wonder if tanning will kind of help me. Not only making me feel better about my skin color, and hopefully kind of taking away some of the jokes that are directed towards me, but I also wonder if it would help me feel better bout the way my body looks. I've always been told that you look skinnier if you are tan, so I wonder if that would change my mind frame.

I also have been stressing a lot about school. In high school, I was a fairly studious girl, who earned a 3.7 graduating gpa. My freshman year of college I earned a 3.8 gpa. But last semester, I took Organic Chemistry I Lab, Microbiology with a Lab, Genetics with a Lab, and Anatomy & Physiology with a Lab. I balanced all that with playing a sport in college. And I barely slipped by. Now I'm taking Organic Chemistry II with Lab, Histology with Lab, and Pathogenic Microbiology with Lab. Needless to say I have a tough semester. These classes are not a walk in the park by any means. I work hard in them to barely get by, and its just so frustrating. I hate not doing well in classes. I remember when I would cry getting a B on an exam. Now I'm ecstatic with a B. I worry about eligibility for next year. I transferred to this school to play college volleyball. Not to have to sit out. I also worry about the student loans that I have to take out to pay for these schools. And I know that I need to get a job, but the thought of carrying one right now scares me to death, because I already have to balance out all these classes and volleyball.

I worry about my dad a lot. I haven't talked to him since Thanksgiving. I don't miss him really, its not that. I just worry about his well being. I heard he has to use a walker now in order to get around. I worry about that. I worry about whether or not he is eating. I worry about whether or not he will be alive the next time I am ready to talk to him. But fact of the matter is, I'm not ready to talk to him. I don't want to talk to him. And then there is Ryan. I have been trying to be brave through our kind of long distance relationship, but it gets hard. I hate only seeing him once every week or two. I love him so much, and I just want to be with him more.

I just want to experience being stress free for a while. But I don't know how to make that happen.

The Words That Aren't There

So it's been a while since I have written anything. Life has been crazy. Between midterms (4 exams). Homework. Labs. Volleyball. Workouts. And Ryan. So this is a little filler until I write my next short novel on here lol. Sometimes I just feel like i'm writing in a diary. That this isn't for anyone but me. Even though I started this to help other girls like me, and help others understand the different. But it has just been a way to help me cope, and understand.

On a different note, I have been having a fantastic weekend (This is my spring break!!) Friday night I got to meet with my friends in Grand Rapids to catch a Griffins game, which is hockey for those of you who aren't from around here. Then we headed to the bars. It was so good seeing all my friends. I barely get to see them anymore, since I moved to Ohio and what not. Saturday, Ryan came up here! We went to my high school for a lil workout, then went out to dinner at the Wheel with Mom. Ended the night watching movies. Sunday, we watched some more movies, took the dogs for a walk, and had a wonderful steak dinner that Mom made for us. I was so sad to him leave this evening. It was such a good weekend. The best I've had in a LONG time.

Well that is all for now. I will be sure to write back again soon :D

We Were Matched To Be

Yes, I know that I said we were "matched" to be, instead of we were "meant" to be. Because Ryan and I actually met on Match.com

It was almost exactly a year ago that I decided to join Match.com. I decided to join because I never got asked out by anyone, and I was tired of just meeting the average jo's at the random house parties. So I signed up for a 6 month subscription, and they had a deal where if you followed certain guidlines for those 6 months, and you didn't meet anyone longterm, you would get an extra 6 months for free. So I decided why not.

I talked to a lot of different people, met up with a few of them. Only one of the guys I went on a date with went past the first date. But after about a week and a half, that was over. So I kind of gave up on it, since I was moving to Ohio, and so I just did the minimum in order to get the 6 months free. I'm glad I did.

I hadn't really talked to anyone from ohio, until I received a "wink" from RbeingJ. I remember looking at his profile, and I immediately was in awe by his pictures and his height! Then I read through his bio, and realized we had a lot in common. We began emailing that night, and he wanted to start texting, but I was cramming for a microbiology exam. So I told him I would text him the next day. And I did. We texted for a long time, because I went to California for a volleyball tournament. But we finally met up the first sunday we were back. We met up at a little restaurant, and had lunch. To kill sometime before his beach volleyball game at a bar league, we went to shoot some pool (I'm pretty sure I beat him). I watched him play some volleyball. Neither of us wanted to say goodbye, so we went back to his place and watched the movie "I Love You, Man". We talked pretty much during the entire movie. Our date lasted pretty much 8 hours. I enjoyed every minute. But I wanted  another 8 hours. That is when it all started, and the rest is history.

Later he told me he was also about to give up and cancel his subscription to Match. He had decided that he would browse through people one last time, and if he came up with nothing, that that would be it. That night he found my profile, and winked at me, and I winked back. He emailed me, and I emailed him back. If it would not have been for Match.com, we would have never met.

This is why I think our love formed so fast. We were "Matched" for each other. I think the only thing we didn't have in common out of the 21 categories was our political views. We have so much in common, and looking for exactly the same things. We connected before our first date even happened. I am happy that we met, because Ryan is everything I have been looking for in a guy. I couldn't be happier with him.

<3

Tummy Troubles :(

So because of my Hormone Replacement Therapy, I have to endure some side affects. The one I experience the most is nausea in the morning. Most mornings I don't really notice it because I have gotten so used to it, and can ignore it. But then I have mornings like today, and you get that feeling in the back of your throat. Ugh, so I can't eat anything at all. And I have to go do an hours worth of weight lifting here shortly. Bah. This sucks.

A note after the workout...

...Tough workout. I haven't been able to eat, and I still feel ill. I'm hoping I can feel like eating here shortly. Ugh I just wanna curl up in my bed til it goes away. Too bad I have Organic Chemistry lecture in an hour. And part of a paper to write. And study for my Histology midterm tomorrow. :(

I Was Dizzy...And Not Because I Was Blonde

So my senior year of high school, I was on the varsity volleyball team for Portland. It was towards the beginning of the season (December 2006), and I was struggling with our workouts. We didn't have very hard workouts, and I was in good shape, so I didn't understand why I was getting dizzy. It would get to the point where I had to sit down for a while during practice. My coaches and athletic trainer decided to have a meeting with me, and it took me completely off guard. They thought I had an eating disorder! They asked me if I was anorexic or bulimic. I understand why they could think this, because I was 6 feet tall and only weighed about 130 pounds. But they also knew I ate like a pig. I could eat 3/4 of a pizza all by myself!

They told me I was going to have to start weighing in before every practice/game. And if I didn't make a certain weight, I would not be allowed to participate. I was furious. So my mom and I made an appointment with my pediatrician. I told him what was going on, and he ordered for some tests to be done. I had them done that day, like blood tests and stuff, so it wasn't a big deal. I was able to make it back to practice in time. But practice was soon interrupted by mom. I saw her talking to my coach, and then they both waived me over. My mom told me that I needed to go back to the doctors, because of the blood test results. I was really scared because we had to leave right away. I can't remember who we met with, but I just remember them telling me I was Anemic.

Anemia is when you have a decreased number of red blood cells, or hemoglobin, in the blood. It also can be associated with iron deficiency. To be classified for having anemia at the age I was (18), I had to have under 12 g/dL, which is about 7.4 mmol/L. So if I have a hemoglobin level higher than 12, I am fine. But they told me my level was only around 5.5. Incase you didn't guess, that is EXTREMELY low. I guess if it would have dropped down to about 4, I would have needed a blood transfusion. They told me if I wouldn't have been an athlete, I would have struggled getting out of bed. They told me some of the other symptoms associated with Anemia. Some of the most prevalent was extremely pale skin (because you have a decreased amount of red blood cells, which add to the color of your skin), feeling fatigued all the time, as well as other stuff. It all started to make sense. I realized that I was sleeping a lot! They told me I was getting dizzy a lot, and tired more, because I wasn't getting enough oxygen throughout my body. Hemoglobin is cell that carries oxygen throughout the body, and it is directly related to iron levels. Since I had a fraction of the hemoglobin of a normal girl my age, I was also only getting a fraction of the oxygen. So you can see, that if you drop to low, it can be extremely dangerous.

I had to meet with a dietician, to discuss how I was going to reverse this. I had to take an Iron supplement daily, which was 65mg. I had to eat foods that were high in Iron, like tons of cereal and peanut butter. They wanted me to eat a lot of salad. Even though the answer wasn't the best, at least I had something to show my coaches. Prove them wrong. Show them that it was nothing that I was doing to my body. I also had to see a lot of different doctors, to try to figure out where I was loosing all this blood. Most women that have anemia is because of their menstrual cycle. But I don't get menstrual cycles, so there had to be another reason. We still haven't figured this out. But I did have to see a ear/nose/throat doctor, and they found something else. I had a mass in my throat, and its not supposed to be there (but I will save that for another post).

So even though I was working to increase my iron and hemoglobin level, we had to figure out how this would effect my volleyball. I was able to practice (and not worry about having to weigh in), but I had to say something immediately if I ever felt too exhausted. I wasn't allowed to play back row. You could see my fatigue when I would play in tournaments. It would take every once of energy to hit the ball. At the end of the tournaments, when I would hit, I would practically fall to floor. Ok, I didn't fall or anything, but I would be crouched so low because of my lack of energy. I was pretty much squatting. I still hit really well, so that was good. After a while, my hemoglobin levels got high enough to get me out of the risk zone. But I am always worried about a relapse, because I guess once you are anemic once, you will pretty much always be near that border line (or so i've been told).

I am happy to say that I don't have to take Iron supplements, and I don't have to track how much I am consuming from food anymore. I am not anemic, as of now. And I hope it stays that way.

My Missing Card

Everyone has those cards they were dealt when they were born. But I wasn't given one card in particular, or you can think of it as one of my cards prevented another card. This card is babies.

So one of the hardest things that I have been going through lately is the fact that i can't have kids. It seems like everyday now, there are just constant reminders of this. Whether I am in class, and we are talking about why breast feeding is more beneficial for new borns, when it comes to their immune system. Or seeing little kids running around on the court at a basketball game. Or going out at night with a girl who has a child. Constant reminders, everywhere I turn. I don't know why it is effecting me so much more right now, than it has in the past.

Maybe its because Ryan told his mom about my condition. Its not the fact that he told her that bothers me, because I had asked him if he was going to tell her. But its more because I know how much she wants grand kids. Ryan has told me many times, that his mom always asked him when he was going to give her grandchildren. Way before Ryan and I ever met. I hate it. It's the one thing I wish I could do more than anything. I would never be able to give Ryan kids that are his. Sure, I plan to adopt, but who am I to take away the chance of having a biological child, because it was taken away from me. This leads to having a surrogate mother. Which is fine for me, because who wouldn't want to have little 6'9 kids running around. It just bothers me, that no matter what I do, I can never have a biological child of my own. I can never say that they have my eyes, or my nose, or anything like that.

The thing I am not looking forward to is when all my friends start to have kids. I know that is kind of selfish, because I am going to be happy for them no matter what. But when my best friends start having kids, I think that is when this is going to be the hardest.

I had done a little research a while back. I found out that the medical field is trying to create a successful way for sexual organ transplants. They had successfully completed this in many animal trials. I believe they have begun working to do human trials, but haven't done much research on it since. I just wonder if I would even qualify for something like that. In order to have a transplant, they have to be able to have something to attach it to. Since I have never had any sexual reproductive organs in my body, I don't know if they could even attach the organs to anything. And if not, would they be able to create those "hook ups"? And I know that even if all this were possible, they would not be biologically mine. The eggs would not have my DNA. But I think that it would help with the sense of helplessness by being able to carry a child for 9 months, and give birth to a baby. But that is a very big long shot, and probably extremely expensive.

I would just give everything I have to be able to reproduce. Even if the only possible time I could have a baby was when I was first diagnosed, just a freshman in high school. I would gladly give up all the athletics I have participated in, all the traveling I have done (between living in Iowa and going to California and Arizona for tournaments). I would have given up anything. But that is not the case, and I am happy with life besides not having kids. I have experienced a lot, I met my amazing boyfriend, and I've grown as a person.

Your Lie. My partial truth.

            Obviously, for a very long time I was ashamed of telling anyone the truth. I was afraid of what people would think. So for the longest time, the only people who knew besides my doctors and I were my mom, father, step-father, and grandma. To everyone else, whether they asked or I thought I should tell them, I lied. I guess I didn’t completely lie, but I didn’t completely tell the truth; just half of the truth.

            I would tell them that I didn’t have a working reproductive system. This meant that I could never have kids, or periods or anything. And I would say that I have to take medicine to help with my estrogen. If I were really close to you, I would tell you that I was born without a reproductive system at all. So as you can see, I never told anyone what was wrong with me. Just shortened versions.

            How could I expect others to understand and accept it, when I was ashamed of it myself. It wasn’t until recently that I realized I had nothing to be ashamed of. It was nothing I did. It was nothing I could control. It’s genetic. I’m still a woman, even though my DNA says otherwise. Gender is much more than just what your chromosomes say. My favorite example that I have heard involves filling out applications. When I am filling out paperwork, and I come across that section that asks for sex, I never hesitate. I check female every time. There is no question about it in my mind. I am a woman.

Complete Androgen Insensitivity Syndrome (CAIS)

            CAIS is a genetic disorder. It is usually passed down through the mother. It only effects genetically XY patients. Since it is a recessive trait, it is impossible to be XX and have CAIS. There are other versions of this Androgen Insensitivity Syndrome (mild and partial), but are more rare, and is not the case for me.

            The mutation that causes CAIS is usually located somewhere on the X chromosome. Androgen is a type of the male testosterone. It is what is responsible for male development of the gonads, hair growth, body odor, and oil production. This mutation on the X chromosome prevents the body from recognizing the androgen (testosterone) in the body. Since the body does not know what to do with this hormone, it is unable to use it to develop like a normal male. So basically, even though the body has hormones running through it, it might as well not be there, because the body doesn’t know how to use it. Since the body can’t recognize the hormone, the germ cells didn’t know how they were supposed to develop. They began developing into gonads, but stopped because it didn’t know any better. When the body doesn’t have any hormones in the body, the body decides to develop female. So even though I had gonads, my body started to develop female characteristics. My outward appearance has always looked female, and I have never had any type of surgery to alter the way I look.

            So even though my genetics say I have a male sex chromosome, I am 100% female. I have a vagina (not a penis, balls, or anything like that). I can have normal sex, and I was one of the few that didn’t have to use dilators. I don’t grow much hair besides on my head, arms and legs. I will never have armpit hair, and will always have sparse pubic hair. The hair on my head will never get greasy. My body lacks the ability to produce the oil that builds up in hair, which makes it look greasy if it’s not washed often. I have also been told by others that is the reason why my skin is so naturally soft. But this is also why I have really clear skin. Sure I will get a pimple every once in a while, but because my body doesn’t produce the same amount of oil like everyone else, my skin will always be really clear. I also don’t have a lot of body odor. I could go without using deodorant, and you would never know; even after a tough workout. But I still do use it when I’m active, because I’m still scared that I will stink. And no one likes being the stinky kid! The most obvious plus to having CAIS is that I will never have a period, ever. I will never have to buy tampons or pads. I will never have to buy a pregnancy test. I will never have to go through the cramps. But that also means I can’t use that as an excuse :( HAHA. CAIS patients are usually taller than normal. I am 6 feet tall. I was the 2^nd tallest girl in my graduating class. Before the surgery, and before estrogen is started, CAIS patients are usually extremely skinny. My senior year of high school, I was 6 feet tall, and only 130 pounds. According to BMI, I was underweight. I still wonder what my body fat % was. I'm sure it was pretty low.

            Well, I just told you about all the positives. Now its time for me to mention the drawbacks of CAIS. The main one, and the most obvious, is the infertility. I will never be able to have children of my own. To some, this is not a big deal. But I would give anything to be able to have a child that is biologically mine. I would give up all the athletics I’ve participated in, even if that meant having a baby at 14. But it will never happen. Women with CAIS are said to have bigger bodies once the HRT has begun. This biggest aspect is these women are said to have large breasts. I mean HUGE boobs. I however, have been on HRT for 8 years now, and am still an A cup. The estrogen also makes you gain weight. I definitely gained after college. But I am proud to say that I have been losing some weight in the past 7 months.

Hormones: Who needs em?

            So because all of the hormones that I had in my body were taken out with my gonads, I had to have a plan to get my estrogen from external source. I started out taking an estrogen pill. I had to start out on a low dose, because my body had never had estrogen before. Eventually the dosage was increased, and so did the side effects. It was nice because my boobs started growing (but very slowly). But the side effects were not that enjoyable. I felt nauseous every morning. It would take about 2-4 hours after I woke up for the feeling like I was going to throw up to go away. This was pretty much everyday. Along with that, I would also get bad headaches. But that was all I can remember of the pill form. I would forget to take it a lot of the time, since I had to take it everyday. So I thought it was time to ask my endocrinologist about alternatives.

            She suggested to me a patch that I would wear, and it would give me all the estrogen I would need. This is what I used now. I have to change it twice a week. It goes on my lower abdomen, just above my lady business. I can’t have hair where I apply them, because it would hurt really bad to peel them off. But with my CAIS, I don’t have a lot of hair down there anyway. There are side effects to the patch as well. I still sometimes feel nauseous in the morning, but not as often. But I got so used to not eating in the morning, I am never hungry when I’m not feeling nauseous. I get some bad headaches still, but they are not as frequent as when I was on the pill. But I do sometimes get dizzy, which is also a side effect. I bounced back and forth between the pill and the patch for a while, but I have been on the patch for a while now, and don’t plan on switching until they come up with alternative that is more long term.

Why is it that when we know we should be paying attention in class, we daydream the most. I find myself thinking a lot about my condition, Ryan, getting my own place this summer, and a puppy. They say a dog is man's best friend, and they will keep you good company. So why not get one if your feeling lonely. Yes, it may not be the most convenient thing, but isn't that part of life. Having things that aren't convenient? It's all about making the choices in your life work. I want to do what makes me happy. And I think that having a little guy who is around all the time, and loves you unconditionally, would be a great addition to my life. I find myself missing my puppies back home a lot. Even though they have their little quirks that get annoying, its those things that I miss the most.

A Heart For Today

Today is Valentines Day. I didn't really get to see Ryan today, but we got to spend most of the weekend together, so that is fine with me :D We had a wonderful time, and I hope everyone is having a fantastic Valentines Day. On saturday we saw Gnomeo and Juliet, then got pizza afterwards. The movie was cute, and I loved the little bunnies, just ask Ryan lol. On sunday, Ryan surprised me with tickets to a Toledo Walleye hockey game. We sat front row, right by one of the nets. Some funny things happened. We all had our beers sitting on the ledge by the glass. I noticed they were skating over to us, so I yelled to grab your beers, and grabbed my own. However, Ryan wasn't as quick. Needless to say, he was covered in beer, as well as the floor at our feet. We got some dinner across the street from the arena, then headed back. We ended the night watching movies and eating the cookie cake I made for him. Needless to say, it was the best Valentines Day i've ever had (mostly because I was with Ryan, but also because it was my first one that I was actually with anyone). It is also just days until our 4 month. To some of you, 4 months may not be a big deal. But for someone like me, who has never been in a serious relationship until now, everyday is something new. But this is one journey that I am happy to be taking.

On another note, I thought instead of writing something about my story with the condition, I would talk about something else. I found an article while browsing online. "When the Perfect Woman is Genetically Male" by Jena Pincott. This article doesn't describe everything about me, but it's pretty damn close. I liked it a lot. It's this article that I found out about other blogs out there that were written by actual girls with Complete Androgen Insensitivity Syndrome. It is what helped me decide that it was something I wanted to do. That is part of the reason why you are reading from this blog now.

http://jenapincott.wordpress.com/2009/06/01/when-the-perfect-woman-is-genetically-male/

I thought that I would also give some of the best and worse things about having CAIS.

Pros:
*No periods
*Clear skin, pretty much no acne
*Soft skin
*Tall
*Athletic
*No hair in the arm pit area
*Little hair growth down there
*Can't get any cancer involving the uterus, ovaries, fallopian tube or cervix

Cons:
*No babies of my own (this is the worst)
*Hormone Replacement Therapy
*At risk for osteoporosis
*Social stigma with condition

The Surgery

            It’s called a gonadectomy. I had to go to Ann Arbor for the surgery, because they are some of the best in the area. They told me I was going to be able to go home that very same day. I was scared. And nervous. But mostly scared. I remember I had a FEAST the night before, because I had to fast starting at midnight. We arrived at the hospital that morning, and I made sure I had my favorite teddy bear with me. His name is Grandpa bear. My Grandpa gave him to me when I was just a little kid, sick in the hospital with pneumonia. I still snuggle with him all the time. But now its because my Grandpa is no longer alive, and I miss him dearly. But anyway, I don’t remember much of that day. But I do remember them wheeling me to the operating room, toasty warm in those amazing heated blankets, holding my little teddy bear. I remember them putting the mask on me that was going to make me fall asleep. It was extremely crazy, because of what I saw when I was going under. I remember seeing all the doctors and nurses around me, and seeing their faces. The next thing I know everything started spinning, and it was just their heads that were spinning around a black and white pinwheel. Crazy huh.

            The next thing I know, I’m starting to wake up, back in the recovery room. I struggled trying to stay awake, so I slept on and off for most of the day. Eventually they got me to stay awake, and after a while they released me. I remember being confused, because they told me they were going to be making small incisions on my belly, below the underwear line. I lifted up my shirt, and I had 3 incisions right in the middle of my stomach. I had 2 that were more on the sides, and a bigger one right along the bottom ridge of my belly button. You can’t really see the 2 small ones anymore, but the one on my belly button is still really visible.  It took a long time to heal. The cuts they made healed up fairly fast, but because they cut through all my muscle to get to my insides, it took a while for the pain to go away in my abs. That summer was rough, because I couldn’t participate in softball like I did every summer since I can remember. I remember trying to pitch one day with my dad. I was able to throw 3 pitches, and then I fell to the ground clutching my tummy, because I was in so much pain. That was about 2 months after the surgery.

            With the surgery, they had to make the 3 incisions to take out the gonads successfully. The 2 on the sides were where they put the tubes that put gas in my tummy, so my belly would get big, and they could move around easily with the laparoscope. The laparoscope went through the incision on my belly button. That is where the pulled the gonads out. They did a biopsy on it, and I think that said it was not malignant. But obviously it would have taken a while for it to develop into cancer. They told me I was going to have to go on a hormone replacement therapy (HRT). I would have to take estrogen supplements for the rest of my life. And believe me, they are not the most pleasant things to take!

Finding Out I Was Different

            This goes back to when I was only a freshman in high school. I was 13, and very close to my 14^th birthday. Even though I was a teenage girl, I was not like most girls. I hadn’t started puberty yet. I was fairly tall, I think around 5’7 or 5’8. I was as skinny as a rail, and virtually had no boobs. I didn’t have any auxiliary hair (arm pit hair or hair down near my lady business). But most importantly, I hadn’t started my period. My mom and I were kind of concerned, so we made an appointment with my pediatrician. He didn’t have any answers for me, so he ordered for some tests to be done. I know I had an ultrasound, but can’t really remember what else they may have done. But I am fairly sure they also had me do some blood tests.

            The day of my tests, I was told I had to drink a lot of water. I mean a lot! And I wasn’t allowed to pee. They needed my bladder full, so when they did the ultrasound, there would be some contrast to everything that was inside of me. They couldn’t see anything, so they had me go to the bathroom and empty my bladder bout half of the way, and let me tell you it was a relief! When they put that cold jelly on my belly, it made me have to go so bad! After they had done some more looking, they said they found something, but they left it at that. I thought everything was fine, and so we left the hospital, without a single concern about anything involving my tests. I knew it would take a little while to get the results back.

            Some time passed by, and a lot had happened in my life. I had tryouts for my high school volleyball program, and I ended up making the freshman team. I had just turned 14, and it was almost time for Christmas break. I don’t remember exactly when the conversation occurred, but I remember exactly how it happened. You see, my parents had been divorced for about 4 years by this time, and they were rarely ever in the same room with each other. So when my mom drove me to my dads house that day, to have a conversation, I was utterly confused. I actually thought they were going to tell me they were going to get back together. Jeeze, was I wrong. Way wrong. They started emphasizing a lot of facts to me. Telling me that I was a young, teenage GIRL. I have been a GIRL all my life. I will always be a GIRL. Then they told me they had met with a specialist. Now I had seen a lot of specialists in my life, because I was sick a lot as a child, between my asthma, ear infections, pneumonia, the whole nine yards. So all I could think about was what specialist it was this time. They told me it was regarding the tests I had done just recently. They said that the doctors couldn’t find the normal female organs. They couldn’t find my uterus, ovaries, or fallopian tubes. I later found out that I also don’t have a cervix. But just like every other girl out there, I have a vagina. My parents told me that what the doctors had thought was my female organs, was actually something completely different. They were gonads, that were in my abdomen (I will get more into the science of this later on). They told me that when I was conceived, I was born with an XY chromosome (normal females are XX, normal males are XY). Needless to say, I was extremely confused.

            I was told that I had a condition called Complete Androgen Insensitivity Syndrome. It is usually genetically passed down, through the mother. The doctors told us this was the case for me. It only effects XY genotypes. So basically, according to my sex chromosome, I was not supposed to be a Meghan. But there was a mutation on that X chromosome that prevented me from developing like a normal XY. Since this occurred, the default development for life is female. So when I was in my mom’s stomach, I began to develop like a normal female (except for my reproductive organs). I was born looking like a normal female. I grew up like a normal female. The only reason we found out was because I hadn’t started my period. So my parents told me we are going to have to meet with an endocrinologist, to discuss what steps would have to be taken with my condition.

            I just remember being in shock. And crying, all the time. I was confused about who I was. I felt like something was missing, and often found myself with my arms wrapped around my lower abdomen. I think its because I realized I did have something missing. Something that I will never get to have. But basically, I just cried a lot.

            I remember going to the endocrinologist, and having her try to explain this all to me even further. I was still confused. But was told that I was going to need to have surgery, to remove the gonads. She told me that if I didn’t have them removed, it would most likely lead to cancer. So we scheduled my operation for that summer. I didn’t have to do much in the mean time, just learn to deal with my new demon. 

Lets start this out with some facts about who I am :)

*I am a young woman

*I am 22 years old

*I was born in Michigan

*I currently play volleyball for a college in Ohio

*I am earning my degree in Medical Laboratory Sciences

*I am 6 feet tall

*My weight isn’t important, except that I have lost 20 pounds since summer :D

*I have an amazing boyfriend named Ryan

*I love music, but mostly alternative rock

*I have attended 4 different colleges in 4 years

*This is the first time I have publicly, and freely, talked about my condition

*I have Complete Androgen Insensitivity Syndrome (CAIS)