2013 Year in Review

Dressed up for Wedding

Happy New Year!  It is a few days into 2014, and we have all made it through the holidays.  This year in Iowa it has been a cold winter.  Since I have been holding up indoors, I have taken time to reflect about things I have learned about myself in the previous year.  This past year doesn't seem like a spectacular one at first glance.  The day to day of life sometimes  takes the awe out of things.  I am the first to admit I sell myself short on my achievements (something I am working on).  Here are some of my highlights of 2013:

In the spring, I agreed to participate in a dance for an Indian wedding celebration for the gathering of the family and friends the night before the wedding.  Our little group represent the friends of the bride from our area.  We met for weeks to learn choreographed dance routines we performed for the bride and groom to be!  I truly enjoyed spending time with the women I danced with, learning the routines, and being apart of their wedding in a small way.  It was a joyous occasion!

Happy to be done with the Pigman!

I started the summer off with finishing a tremendously windy sprint triathlon.  I completed this triathlon before in agreeable weather conditions.  I am a slow triathlete, so my goal is usually to not drown and just finish.  My goal for the 2013 Pigman Sprint was to finish and beat my time from the previous year, but with the weather conditions my goal changed to being "just to finish!"  I was focused on the bike portion of the triathlon just to keep moving, even when it seemed like the wind was making me go backwards.  I was proud of myself for sticking to it, and finishing before some of my "competition".

Another awesome experience for the year was attending the AIS-DSD conference in Boston, MA.  I wrote up my blog post about attending the conference.  But I cannot express how I benefited from going to the conference, and how it helped build me into a stronger person.  I totally plan on going to the one next year that is going to be in San Francisco and want my mother to go along with me this time.

Some harder lessons were learned when I went on a trip to South and North Dakota and had signed up to do a triathlon on the way to visit the in-laws.  The swim portion was significantly longer than I had done in the past, and after my first triathlon was finished in June, I had not continued with training to prepare myself for this one.  My husband and I arrived to South Dakota and were preparing for it, we arose that morning and as I was surveying the swim portion and surroundings, I backed out of it at the very last second.  The start horn went off and I couldn't get in the water.  I was unprepared and afraid.  It is OK to back out of things, but it's OK to say no earlier than at the starting gate.

Later in the fall, I took the reigns at works while my supervisor was out recovering from surgery.  I attempted to do the best I could being in charge at work.  Until I got sick with a really bad cold!  It's difficult being in charge of housing cancer patients when you are also sick.  You have to take care of yourself, and make sure things are still going on as they should at work- without exposing the patients to your sickness.  I had some excellent coverage with the staff, so I could hide in my office and do administrative things.  Once I lost my voice, I stayed home for a day and a half to rest.  Also, I had to examine my role as a leader at work when one of my volunteers asked me to answer questions for a paper she was writing on leadership.  It turns out, as a self-conscience, over weight, intersexed cancer survivor I had a hard time seeing myself seeking out a leadership position.  As a social worker, I wanted to work with cancer patients and their families- which had led me to where I am today.  But now that I am in my role at work, I truly am loving it as the past couple of years have gone by.

The last major positive step for our family was filling out an adoption registration form.  It is the very beginning phases of a process that can take a couple or few years, but as soon as we me the qualifications of being married for 3 years for domestic infant adoption we sent in the form!  I will use this blog to update on the status of this process as well in its various phases.

2013 was a year full of ups and downs, but this is to be expected.  Overall I am happy with the year gone by and feel blessed for the experiences I had and the people in my life.  I am also working on my dedication to this blog I had started.  It was easy to talk about the story of my past, but once I got passed that it was difficult to continue with topics and formatting.  So, I will continue with writing and see where it takes me.  It will be a mixture of  things about my life as I move forward with it.

all Smiles in North Dakota!

My First Conference

Ever since I joined the Androgen Insensitivity Syndrome support group, I knew there was an annual support conference they held.   I was finally able to make the conference this past summer, which was held in Boston.  I was excited to go to the conference for many reasons.  First of all, I have been communicating and receiving support online for close to ten years, Boston was a city I have always wanted to check out, and my husband was going with me and we were making a vacation out of it!

Getting to Boston and taking off work was one thing.  The people who know of my AIS diagnosis knew about the conference and my excitement for it, but others just knew I was going on vacation to Boston, but didn't really know why.  I knew that I was finally going to meet many other affected women with AIS.  Up to this point, I had only met one other person in real life and participated in the online community.

Once I got to Boston, my husband and I had some time to settle in and take in some sites.  I love the city, and get quite jealous of people that get to take the metro to work.  As the conference grew closer, I was ready to learn and get involved.  I had a few other attendees warn me about taking breaks and taking care of myself if I felt overwhelmed or exhausted by the experience, but knowing myself and with my social work background I knew that I was at a good place to monitor if I was having those thoughts.

I attended sessions about feeling different, discussing fertility options, mental health resources, and most importantly- sharing your story.  I was finally in a place where I could openly share my story from start to finish and listen to the story of others.  I was in a room full of women nodding my head and thinking "you sound just like me!"  It was an amazing feeling to bond and unite together in such a setting!  I also got a kick out of seeing the youth who attended the conference, and noticing through the education, support, openness with their families about being born intersexed, they seem much more confident than I ever did at their ages.  I hope they continue with that attitude.

Intersexed advocacy was a hot topic at the conference, and starting with bringing our stories to the public.  We are silent in the population, because there is fear and shame behind gender ambiguity.  Some amazing people have started to share their stories online on a website called the interface project- http://www.interfaceproject.org/.  We want to increase education and awareness in the general public for what it means to be intersexed and make sure we maintain our rights as human beings.

The most fun times were when we got to hang out and socialize and just get to know each other.  We all have this major thing in common, but we are all so different with our personal lives, where we live, our hobbies.  WE ARE SUCH INTERESTING PEOPLE!  It's a wonderful thing to have this conference to bring us together- too bad it's only once a year!

Finally, I had mixed feelings about having my husband with me.  I knew I was going to have a different experience at the conference alone or with a friend who was born intersex.  He participated in his own sessions and did his own thing at times.  Some of the other parents saw him as a role model of someone who accepted his intersexed wife for who she was, giving them hope for their daughters (which was cool, but every relationship experience is different).  Overall, I am glad he went because we got to have some discussions as a couple that validated our marriage and feelings to one another.

I left the conference feeling validated and empowered.  I have grown as a person and as a couple.  I plan to go to more in the future, starting with San Francisco and hopefully bringing my mother with me.

Leo and I After Finishing a really HOT Boston 5k

Happy Intersexed Awareness Day!



I have joked in recent years that October is the "month of Amy" as it starts off with my birthday and ends with my remission day.  My remission day is when I had my last chemo and I was set free from cancer treatment.  But then I got married in October.  But also October hold Intersex Awareness Day, which is the 26th!  So many reasons why this is my favorite month and to celebrate- besides pumpkin spiced lattes!!

No, I didn't get any presents today or anything special for being born intersexed (the day isn't over yet!)  But I would like to talk a little about why this day is so important.  We as intersexed people have a voice.  Many of us are afraid to use it.  Our voices have been stifled since we were born and our parents and those who love us very much were afraid of how society would view their babies that were born differently.  Things have started to get better, but there is still stigma and many intersexed people still feel like they cannot be themselves and compartmentalize how open they are with friends, family, and others in their lives.

Our community is also trying to increase advocacy with medical issues so we can have more control over our bodies.  One big example is people born with variations of sexual anatomy should be able to choose what they want to be and not have it assigned to them.  Another issue is having medical staff willing to work and try different hormone options.

The last reason why a day such as today is important is that many people don't know we are out there or even think twice about us.  We are a secret part of the population that you can hear in statistics or in theory, but many people have never put a name or a face to it.  We are out here.  We exist, and there are quite a few of us.  We have rights.  We continue to grow more stronger and more confident each day.

Finding Love

October 9th, 2010 was a day for many years I thought would never happen.  I got married to my husband, Leo!  We met through an online dating site, and I wasn't sure if we were going to be a good fit because he is younger than me and because of his "non" religious status.  But there was something intriguing about him and I wanted to get to know him better.  It wasn't love at first site, and Leo wasn't even sure if he was attracted to me at first (as I recall).  But the more time we spent with each other, the more we wanted to be with each other.


After dating for about five months, Leo proposed to me in the gardens in the Getty Museum while on vacation in Los Angeles.  I said "YES", and it was perfect!  There was only one problem...I hadn't told him about being intersexed yet!   Everything I knew about him up to that point led me to believe he had accepted me for who I was.  I told him about being a cancer survivor and not being able to have children of my own, and he was already on board with adopting someday.  But from fear and stigma I was not up front right away about being intersexed with him, which is something I deeply regretted!

I finally divulged my secret to him late one night while lying in bed.  I worked up anxiety about telling him and was having a hard time getting to sleep.  So I knew a long sleepless night was going to be ahead of me if I didn't say something!

The fear of telling someone I loved I am interesexed, and how they may react kept me from getting close to someone for so many years.  I have finally put myself in the position to overcome these obstacles and push beyond my comfort levels.  But being in a relationship and eventually getting married were things I truly wanted, and I am glad I took the risk even though I wish I had handled some of the things differently.  I also recognize that I had a positive experience, and an grateful my husband accepted me for who I was.

I wish there were more men out there like my husband, as regular and humble as he is.  He is also open-minded and a self-proclaimed feminist  Together we make a great team.  Together I am free to be myself, openly and even loved for just being me.

The Realization

My light bulb moment about what it meant for me to be born intersexed came when I was 24.  I was working with young adults in HIV/AIDS prevention, and I was in my office and decided to do an Internet search for the term "Complete Androgen Insensitivity Syndrome", which is what I have seen listed in my medical charts.  And BOY was I in for a surprise.  This was the first time I was presented with the terms "intersexed" and was educated that although I developed as a woman, my chromosomes were male.

Up until that point, I had learned bits and pieces about my body and reproductive abilities along the way.  My parents told me before I was 12 I was not going to be able to have children and get my period like the other girls, and I would have to have a surgery in the next couple of years...but it wasn't too clear as to why.  But then came my cancer diagnosis and that took the spot light away from my reproductive health concerns.  I started taking hormone replacement therapy (hrt) and thyroid medication (due to having radiation to my head/neck) and didn't really think much of it because I was really good at following the orders of my doctors.  Because heck...I just wanted to get through my cancer.

I have a memory of going to a doctor appointment as a teenager with my endocrinologist and the resident told me I was born with male chromosomes.  I think that was their big moment of educating me about my condition, but it didn't register with me at all.  Maybe because I came close to failing biology in high school?  In all fairness, it was a quick mention about having male chromosomes and no follow up education or offer of mental health services for emotional support.

Things have gotten a little better over the years for intersexed people to learn about their conditions, but there needs to be some solid guidelines health professionals to follow for educating families and their patients.  Most intersexed people would agree the best way to do this is open and honest education from the diagnosis and continued emotional counseling and support.  There had been too many intersexed people who learned about their diagnoses by doing their own research because they were never told directly by health professionals what was going on with their bodies, and their families were also told by these same doctors to not talk about it.  We are starting to move past this and that is a good thing!

This realization and Internet search at the age of 24 led me to a special place.  An online support group of other women just like me!  I touched base with the group and was quickly accepted.  I knew I wasn't alone and learned many other women out there had stories like mine.   But for many upcoming years I held onto this information like a secret.  Afraid of the unknown of what would happen if other people knew that about me?  My friends would like me for who I am, but what about love?

My Dating Life

This post should actually be titled my "lack of dating life". I will also start off by saying, yes, I am married to a man and am attracted to boys and have always been. That has been my personal preference, even with my male chromosomes. With everything that was going on medically, socially, and psychologically during my teen years, I had developed a timid personality about dating early on.

I would develop feelings and crushes towards different boys, but would never have the courage to act on them. I directed my time towards my family, friends, and education. It wasn't until I was in my mid-twenties and tried online dating and realized it was a tool I could use to put myself out there that I was comfortable with. More comfortable than going out to bars and talking to random guys while out with my girlfriends. There were some successes and failures with online dating, but I did eventually meet my husband online and we'll be married for 3 years this fall.

The next thing I knew my 20's were ending and I still hadn't had much experience with serious relationships. At my 30th birthday party a friend of mine brought a guy who I was acquaintances with and we started to date. I developed deep feelings for this man, and we dated from the fall to the spring. But I recognized some red flags, and never told him about being intersexed. He was divorced and had a child, which he kept at arm's length and also drank too much at times. I never told him about being intersexed because I didn't know how he would take it. With all things considered it was my first long term adult relationship, including long term sexual relationship. Things fizzled after about six months, and I found out the next fall he was engaged and getting married very soon! I was shocked and very hurt! In the end it was for the best, but this was the platform that initiated my confidence to put myself out there face my fears.

Dating for intersexed women can be a challenge. You have to deal with a valid fear of rejection from disclosing information to a partner who you may be in love with. They can either love and accept you for the intersexed person you are, OR rejected you. This situation may be true in many relationships where there is a potential for rejection. But many people aren't holding onto something they feel is a big secret about themselves, or something that has a stigma behind it. It may take a strong partner to be fully accepting of marrying someone who tells you "I am intersexed". But if you can work on the fear of rejection and put yourself out there, if you find the right person...it can be totally worth it!

Higher Education

After high school, I attended Kirkwood, a community college and lived with my parents.  I still had some friends in the area, and we had a good time together.  We were young and were having fun.  But I was still recovering from my chemotherapy treatments.  I would get short of breath even walking to classes and going up a hill and stairs on campus.

At Kirkwood I studdied Disability Services, but my long term goal was to work with cancer patients and their families.   I focused on catching up on the subjects I fell behind in in high school (math, science, Spanish).  I went to school all year round, taking up to 18 credit hours each semester while holding down a part-time job.  I had a balance of classes I enjoyed and even excelled at.  I was proud of myself when I graduated and had my associates degree, but I wasn't going to stop there, I wanted to keep going!

I went on one college visit to Wartburg College.  I loved the campus, and the social work program I ended up majoring in.  I applied and got accepted.  I was excited with the opportunity to go to school there, but nervous because I was a transfer student and had never lived away from home before.  Thankfully, I had a really great roommate who was fun and easy to get along with!  At Wartburg I did well in my social work and most of my other courses.  The two years flew by and were some of the best years of my life!  My most challenging time in college came during my final summer social work internship when I was doing hospital social work.

Months before I started my intern, I noticed a breast lump, but in fear I didn't tell anyone and bottled it up.  I broke down and told my parents that summer during my intern, which led to some emotional uprising.  I had been struggling in my intern before that, but now my social work supervisor at the hospital questioned whether or now I should quit!  I had plans to move to St. Louis at the end of the summer, and start graduate school at Saint Louis University.  I got through my health situation, my breast lump was removed and non-cancerous.  But finished the rest of my internship with much support from my college professor and lots of anxiety.

My two years at Wartburg flew by.  I was again proud of my achievements when I graduated, as I was the only one in my family with a college degree.  That August, I moved to St. Louis to start my masters program.  I was enthusiastic about being in the program and majoring in health/mental health, but at this point I was totally unsure about my path in social work.  Until that summer, I thought hospital social work was where it was at if I wanted to work with cancer patients and their families.  I attempted to maintain a positive attitude during that year and a half program, but my insecurities and stress remained high, and my stress eating started to become more of an issue.

By the time I graduated from St. Louis University, I was overjoyed with my accomplishment and the fact I achieved my goals and overcome so much!  But I started to feel lost and confused about my career path.  During college, I had been working at group homes and people with disabilities, which I truly enjoyed, but my hopes and dreams of being a medical social worker would eventually diminish.  The rest of my career ambitions are for another blog post, but I definitely learned a lot about myself during my College and grad school career.