The Most Difficult

The hardest part of having Turner's for me has been the infertility. I was only about 15 when I was told that more likely than not I would not be able to have my own children. Being that young I tried to tell myself that the doctor's were wrong, I would be one of the chosen few with mosiac Turner's that would get pregnant. I always held out the little speck of hope.

When I was first put on the birth control and fairly easily got my first cylce, I honestly bacame even more excited. That fact made the sliver of hope grow. Through my teens, I focused on the tiniest of chances that I would one day become a mother. When I babysat neighborhood children, I would force myself to treat and talk to them as I pictured myself doing someday to my own children. I held this hope until about two and half years ago.

Two and a half years ago, I wanted to actually start going through the tests to find out exactly what my chances were to get pregnant. The first test I had my doctors do was test my FSH( follicle stimulating hormone), when I got the results back I was somewhat devastated. My doctor had told my that my FSH levels were at a post menapausal rate. I shrugged it off though, because I hadn't been on my medication so I figured if I got back on my meds the levels would change. The second test that they ran was a pelvic ultrasound. For those that don't know, a pelvic ultrasound is basically the same thing as when a woman is pregnant, but you aren't looking for the baby.The results of this test really devastated me. I was told that they couldn't even see my ovaries, either they were only streaks......or they didn't exist.

The devastation I felt on those occaions was inmeasurable. I wanted to curl up in a ball and hide. It had hit me that I would never experience the joys of pregancy. I would never have sonogram appointments, I would never feel the baby kick, I would never have the man in my life feel my stomach to feel the baby, and the biggest one of all......I would never experience giving birth. To be brutally honest, the devastation never has ever really left my heart. I'm at that age to where all my freinds are getting married and having children. Most of the girls I went to school with already have 2 or even three kids. Sometimes I get thrown back to being the outcast.....I'll be the only one of my family and freinds to not have my own children. Most of the time I'm ok with it, I've accepted it. The times it usually starts hitting me agian is when I found our about another freind of family member having a baby. One of the hardest days of the year for me is mother's day.

I'm not gonna sugar coat this, this is the absolute worst part about Turner's for me. I'm not the only girl with Turner's who feels this way either. If you look at message boards and other blogs you will hear a lot of the same things about the infertility that I am telling you now. From what I've noticed, the infertility is a big reason that most Turner's girls end up finding careers that somehow involve children. My advice to all who read is this, find a good councelor to help with the grief and help you learn to accept the horrible truth. A really good councelor can also get you in touch with resources such as adoption, foster care, and IVF. I know it's definitely not the same, but if you want to be a parent bad enough....you have options.

How My Life Has Been Affected Part 3

Now, from what i've told you in the previous two parts of this story, overall Turner's hadn't really affected me up until I was fifteen. Right at about fifteen is where I really started being affected. A lot of stuff came to light about the Turner's when I was fifteen. I was a fifteen year old taking medications for my thyroid, as well as birth control. I was just starting high school too which was a bit of a battle on it's own. The bullying only got worse as I got older too.

My freshman year of high school was a bit of a pit of hell. As if I wasn't smaller than everyone as it was, most of my class hit growth spurts the summer before we started high school. I had also finally started having monthly cycles like the other girls my age that year too. I remember when I had my first couple of cycles the girls were amazed cause most of them had been dealing with that issue for a couple years. I also hadn't really told a lot of my class about the Turner's syndrome until now either. I didn't need my classmates to have yet another reason to think I was different. I didn't really have a choice though when high school started because the differences really started becoming obvious. I never really felt like I fit in at all in high school. I was always treated like an underclassman because I was so much smaller than everyone. People were always asking why I was so short and how tall I was. It was kind of annoying to constantly answer these questions. This kind of stuff just continued all through high school. It didn't help that my parents split halfway through my freshman year....I had to move and start a new high school where nobody understood me.

The high school I went to for my sophmore and junior years was really cruel. I was called "umpa loompa" and other hurtful names behind my back. Between the name calling, constantly feeling like I didn't belong, and my parents split, I ended up in a very bad depression throughout most of high school. I never attempted suicide or anything, but i never wanted to go out and be a "normal" teenager. I usually stayed home with my nose in a book. I always had a bad mood, I hated the world. I was also a very stressed out teenager because I had to attempt to accomplish a ton of homework as well as work a part time to help my mom out. The depression got so bad, I was constantly having thoughts of suicide. I should let you all know that girls with Turner's are sometimes prone to depression. What got me through that the depression was knowing that I was too damn young and I there were so many things I knew I wanted to accomplish.

One of the things that got me through that I wanted to accomplish was going to college. I started community college right out of high school. I started out going to school to become a paralegal. College started out just like high school, I still didn't fit in. I was still treated like I was at least five years younger than I really was. I was still answering the same questions from high school too.I mainly just went to campue and got through classes, I didn't really interact with anyone from classes. I never joined a study group or anything. Shortly after I started college, I met my now ex-husband and things started to change. I snapped myself out of my depression mostly but I still had my moments yet at the end of the day I could still be me.

How TS has affected my life.....part 2

In the last post, I spoke about how Turner's had affected my life from diagnosis to about age 10. As you may have gathered, as I have gotten older it has affected me in different ways.  This post may contain some information that gets a little personal for people: but I want to share it anyway, because when I was growing up I wish someone had shared this information with me.

Most people know that when you are in either fifth or sixth grade, your school nurse will show the boys a certain video, and the girls a certain video. My school nurse showed us the videos at the end of the fifth grade year. After seeing these videos, most of us go home to mom and dad with a ton of questions. My parents didn't quite know how to answer these specific questions for me.For those of you who don't know, girls with Turner's syndrome hardly ever go through puberty naturally. Most girls with Turner's have to have some sort of Hormone Replacement Therapy(HRT). My parents decided along with my doctors that we should wait as long as possible to see if I would start puberty on my own before starting me on an HRT.

While we were waiting to see what mother nature had in store for me, my pediatrician wanted to run a couple more tests to see if anything else that typically happens to girls with Turner's was going on with me. The first thing he wanted to check was if my growth platelets had started "capping off". The reason for this test was because if possible he wanted to start me on growth hormone therapy. Unfortunately for me, my growth platelets were too far capped to do the therapy. Some of you have probably been doing research and are having mixed feelings about growth hormones. Those mixed feelings are very understandable. From the research i've looked at, it seems as if the hormone therapy does work, but only if you start it early enough.

The second test that my pediatrician wanted to do was just an ultrasound of my kidneys to make sure I didn't have any abnormalities in my kidneys(Horseshoe kidney). With that test we were in luck, I didn't have any issues.

As we were kind of waiting for mother nature to take it's course as far as puberty goes, I started noticing all my freinds one by one starting puberty way before me. Some people might be asking " what's the big deal? It sucks being a girl during that part of the month!", which normally I agree with. When I was a teenager though, it was this one more thing that made me totally feel left out. First, I was always the smallest in my class, I was known as the teacher's pet, now this? I felt like a total outcast. I just wanted one things to go "normal" for me. Then when I turned about 14, since mother nature hadn't taken it's course, I was put on a form of Hormone Replacement Therapy. For me, my pediatrician started me on premarin to get my body to begin my cycles, I was simultaneously starting birth control for the estrogen replacement to continue having my cycles. As you can probably guess, my dad wsn't too happy with his 14yr old daughter being on birth control......mom took care of that.

Between not starting puberty on time and always being the smallest, I have never quite felt my age. Let me tell you, it's not always fun. For example, my best freind and I, along with her fiance walked into a sotre once, mind you I am the oldest out of the three of us, the clerk ended up assumimg I was the daughter of my best freind and her fiance. If you were to talk to me face to face though, you would probably say that I am quite mature and intelligent beyond my years. The joke around the house when I was growing up was that I was something like thirteen going on thirty.

One thing I want everyone who reads this to remember, that despite all these struggles that I've gone through with the Turner's, I always stay true to who I am and not let anyone bend me. Sure the short jokes and comments about my height and comments on how young I look can get to me some days, but for the most part I just let the haters keep hating and do my own thing. I do my best to remember that the comments and jokes usually come from people who know nothing about my situation and they usually don't mean to be rude, they are just curious.

Stay Tuned For Part III.......

How my life has been affected....part 1

As you all may have read from the previous post, I wasn't diagnosed with Turner's until I was 5 years old. In a way, the doctor's didn't notice anything out of the ordinary with me until then. Right before i was officially diagnosed, my pediatrician began to show concern because i wasn't in the "average" area of the growth chart for kids my age. At that time, the height was his only concern. The height wasn't really a big concern at first though because most of the women on both sides of my family are fairly short.

The height remained the only small concern until I was diagnosed. Other than being short, I was exactly like the other kids in my class. When I was diagnosed, the doctor had said that i might have trouble in math and reading comprehension.I have never really had any issues comprehending books, and retaining the information. The math issue though i did end up having issues with, although not until I reached about 8th grade. Since then, at least for me, it depended on the teacher for math. Some teachers I clicked with and could understand math really well, others i didn't click with and that is when my grades in math would fall.

My classmates never really noticed a huge height difference until we were in about the fourth grade. That's when the distance between their height and mine started to get dramatically bigger. I began being called "shorty", "shortstack", "small fry", and pretty much anything else height related. Sometimes I didn't mind because it was my freinds calling my those things in a playful, good natured way that never hurt my feelings....other times those names were like daggers.

For me, Turner's did not affect my early life too much. I was your average kid. When I got older however, is when it definitely started affecting my life.