Letter To The Parents

Letter to the parents:

This posting is for all of you out there who are parents of girls with Turner’s or are soon to be parents of a little girl with Turner’s. This road you are on is going to be very long and have a lot of bumps in it.

If you are a parent that has found out that your unborn daughter has Turner’s, my thoughts are with you. From what I’ve gathered from the other butterflies and butterfly parents I have been in contact with this is the most difficult road. The doctor’s will say a lot of really scary things to you. They will tell you that the chances of this baby even coming to term will be slim. They may even suggest you contemplate termination of the pregnancy.  They will most likely tell you that if the odds are defied and the baby survives that she will have a very hard time fitting in and possibly have a difficult time with school. While these things may be true for some of us butterflies, it is not true for all of us. You must have faith that your little butterfly can defy all odds, because that’s what we typically do.

Now, I am a butterfly..not a parent to one so I can only tell you what I have observed and what I believe my own parents went through with me. Some of you parents may be very extraverted or outward about your concerns for your daughter, and some of you might be introverted or inward about your concerns for your daughter. Both ways are perfectly good, because either way your daughter will know you care. I recently realized that I had one of each type growing up. My mom was very extraverted about her concerns. She was very vocal about her worry and concern. My dad on the other hand was very introverted about his concerns and worry. What I recently realized was that he did that for a very good reason. When I was a kid, it may have felt like he wasn’t very involved. Now that I’m an adult and have a different perspective I realize that the way he was involved was very behind the scenes. In his own way he did certain things behind the scenes so that while the Turner’s may have affected my life, he was going to provide everything else so that nothing else besides the Turner’s would affect my life so much. Either way you are with your daughter is a good way.

There are other parts of being a parent to a butterfly I want you folks to know. You are going to be somewhat bombarded by doctors. Your daughter is going to need a regular pediatrician, a cardiologist, and an endocrinologist. She may also need more doctors than that at some point. These doctor’s may not always agree on certain treatments either. As the parent, it is your job to listen to all of them and decide what route is best for your daughter and fight for that decision. Most of the bumps in the road as a parent to a butterfly will have to deal with medical decisions. Never fun, but necessary.

I hope this has been helpful and has helped you prepare. May all your butterflies always soar and defy the odds.

It Never Goes Away

So by now we all know that infertility is one of the most having Turner's Syndrome. It's not easy for any woman to handle. There are several components that will literally tear a woman down emotionally. I'm not even going to pretend that this post is strictly about Turner's Woman dealing with infertility. This post is about how ALL woman typically deal with the infertility. Now, I have written a previous post about how infertility doesn't always mean you won't be a parent, and I hope you all read it and that it was helpful. This post believe it or not is going to delve a little deeper.

I'm a member of a few Turner's support groups on facebook and there is a repeat question that is constantly asked..."Does the pain of infertility ever go away?". Sadly everyone I have to report that at least for the woman I know who have fertility issues it doesn't ever one hundred percent ever go away. There are reminders everywhere you look too. 

Here is what I personally have gone through. When I first got test results back on my FSH (follicle stimulating hormone) levels I was immediately in denial. I thought that just because a hormone level was off it didn't matter. My mind told me that I could change those levels with diet or taking a pill or something. It didn't really hit me that hard.  A little over a year later I had a pelvic ultrasound done to find out exactly what was going on with my "equipment" so to speak. It didn't REALLY hit me until after I got the results of that ultrasound. That day I will never forget. That day made my heart break into a thousand pieces. My doctor had personally called me with the results instead of having the nurse tell me. She told me I have what is called a bilatteral uterus. This basically means that my uterus is divided in two. The ultrasound also revealed that my ovaries were either non-existent or at the most what they call "streaks". Between knowing what my FSH levels were, the bilatteral uterus, and basically being told I have no ovaries I broke down majorly. I spent a good half an hour straight balling my eyes out. I had to compose myself though, because I had to be to work two hours after the phone call was recieved from my doctor.

Of course you would think that you might have at maximum a couple weeks of devestation and then be back to normal, and that's true to a certain extent. The truth of the matter is that deep down I truly have accepted the fact that I won't be a birth mother. Here are ways that it will catch up with you though. At least for me, it's really tough to hear every time a family member or freind is pregnant. I am always genuinely happy for them, but at the same time it's always a reminder that I won't have the joy of posting an ultrasound pic on facebook of a baby that is growing inside of ME. It's a reminder that I will never get to look at my someday Husband and tell him that the baby is moving and reach for his hand to let him feel it. Something at least that also makes it hard for me is working in a grocery store. You may be thinking to yourself " How on earth does that have anything to do with infertility?". The truth is that it's very difficult to see all these young couples come in, I'm talking that they are my regular customers from soon after they meet, and slowly see them get married and get the whole happy ending when I know that there will be one key piece for me always missing.

There will always be those people too who tell you" It's not the end of the world. You can always adopt.". I know they mean well, but the people who say that don't understand the half of how difficult an adoption really is.First off, the cost alone is substantial. Then you have at least a hundred different hoops to jump through. IVF is just as frustrating. Sometimes the embryos aren't viable, after transfer there is the high risk of miscarriage, and many more things that could still go wrong.

For me, on the day to day I don't struggle with it too bad. I handle it pretty well. It's when I see the pregnant customers at work though, or see on facebook about family getting pregnant. These things and a few others are my triggers for getting reminded about and not really feeling too great about it. For many women who suffer from infetility it makes us feel useless too. Makes us feel like we can't fulfill one of the major things that nature made us for. We worry if we have a man in our life that not being able to bear him children will make him run in the opposite direction.

For you guys reading that have a woman in your life with infertility I have only one piece of advise for you gents to help you out because I know this situation isn't a good one for you guys just as much as it is difficult for us women to go through. You guys sometimes feel useless in trying to make us feel better about the situation. The only thing you can really do is just be there for the woman in your life and assure her that you will always be there no matter what happens. Most of the time that's all we need to hear. We might need to hear it more than a few times though.

There you have it folks. A litte insight as to what you women can expect to go through as you wait for the test results to come back, when you do get the results back, and more. What helps me get through those days when I have a lot of reminders is journaling and reminding myself that my situation doesn't make me any less of a woman or person. I hope this post is very helpful to everyone who reads it and as always.......may us butterflies always soar!

The Heart

As many of you know, there are many health issues associated with Turner's Syndrome. There is everything from kidney issues, being diabetic, heart issues, and of course the reproductive issues. Today I would like to talk to everyone about the heart issues and possibly how to strenghthen your heart and prevent worsening the issues.

One of the major heart issues that can happen with Turner's its whats known as coarctation of the heart. Coarctation of the Aorta is when there is a narrowing of a section of the Aorta to an abnormal width. This can cause a dangerous flow of blood in the heart which will more than likely kill you. This is only one of the many reasons us butterflies need to take extreme care of our hearts.

To take care of our hearts takes a few steps. The first step is to keep a diet low in fat. If you eat a diet that is too high in fat, this could worsen the narrowing of the arteries already happening by the coarctation. Fat could easily build up and make the path through the artery virtually non-existant. I'm even going to begin to tell you to completely stay away from fat. Truth be told, I don't even follow that. What I can advise you to do is to eat lean meats when you feel like eating meat. Also, the milk you drink should be at two percent fat or lower. don't go through the drive through of fast food too much. That right there is an evil trap.

A second step in taking care of your heart is.......as you might have guessed excercise. The right excercise to be precise. Doing cardio is always good for your heart. What some people might not know is that there are two types of cardio. Those two types are aerobic and anaerobic. Aerobic is when your body is getting a lot of oxygen. This is good for your body to a certain extant, however you need to also balance it with a small amount of anaerobic cardio every once in a while. Anaerobic cardio is when you work your heart with little oygen. This may sound like a bad idea at first because you are seeing the words "little oxygen". The truth is that if you do SHORT bursts of anaerobic activity it's good for your body because it makes your body huff and puff and work for the oxygen making all the muscles in your body stronger, this includes your heart. Always consult a doctor with this information first, but I have been doing 30 second sprints 4 times and day only 3 days a week and I have been feeling a major difference!

If you want to learn more about what coarctation is and how you can prevent it if you have it, you can take a look at the wikipedia article I have linked to the blog. You can also always speak with your cardiologist who should be able to explain it fairly well. As always, I hope this was helpful and may your health stay strong. May us butterflies always soar!

Taking Off Those Extra Pounds

For some of us Turner's Butterflies, our weight can be a little issue. If you are like me and have been diagnosed with hypothyroidism ( underactive thyroid), losing weight can be extremely difficult. Trust me, ive tried just about every trick in the book.

You might be asking what the link is between hypothyroidism is and having issues losing weight. The link is very simple. The thyroid is a gland in your body that secrets the hormones needed to encourage your body to burn fat and make muscle. Therefore, if the gland isn't producing enough of the hormones you won't be able to lose the weight. I would like to share with a few things I have come across lately that have helped me finally lose weight.

The first thing you need to do if you have Hypothyroidism is be very good about taking your thyroid medication. If taken wrong the meds won't really do you any good. One of the things I hope your doctor or pharmacist instructed you on, was that you need to take your thyroid meds on an empty stomach and give it about an hour before you eat anything. For me this started out being difficult because I am also on medication that I usually take at the same time, but the other medication makes me extremely hungry. I had to learn to make myself wait just a little bit so my thyroid meds would have a chance to do their thing.

One thing I started doing recently that really helps is actually making smoothies with breakfast! My boyfreind makes these awesome smoothies that we share almost every morning. We usually put banana in, frozen strawberries, peaches, spinach, blackberries, and even apples. This one smoothie even split between the two of us has all the vitamins we need to kickstart our day, and believe it or not they taste amazing too!

Another thing I just kinda decided to try recently and worked, was cutting back on how much soda I drink. I actually try to stay away from a lot of sugar period. This isn't making the pounds totally melt off but it is helping.

Well, folks,  I hope these tips help you, and I encourage anyone to write me about how much these and other tips I have given have helped. I love to hear from you guys. It fills my heart with happiness to hear these amazing stories. May we butterflies always soar!!

A Little Encouragement

This week folks, I did something absolutely extroardinary. I did what's called " beating the deck". What is beating the deck? It is something that not everyone can do and feels absolutely amazing when you do. As you have most likely read in previous posts, My wonderful and amazing boyfreind is also my trainer, well he has this system where you use a deck of playing cards to determine how many repititions to do for an excercise. Jokers are 25 reps each hand, Aces are 20,Kings down to Jacks are 15 reps each hand and the rest are face value. In total, the deck contains 1252 reps. What I did to beat the deck was complete 1252 reps with a 14.8lb sledge hammer against a tire. The total weight I lifted was 8.6 tons!

You may be asking yourself what on earth does this have to do with being a butterfly. In my opinion, it has absolutely everything to do with it. If tiny me at a staggering 4'11" can move 8.6 tons worth of weight, I can do anything I put my mind to. Us butterflies constantly hear comments about how we can do certain things because we are too small. Just because we are small, doesn't mean we aren't strong both mentally and physically.

The way I see it, if I can do that amazing feat of beating the deck....the rest of you reading this can do something very similiar. I'm not just talking brute physical strength here. I'm talking about getting an A on that really important test, getting to law school or medical school, becoming a college or professional athlete, Whatever you set your mind to, if you have the right drive and determination you can always meet your goal.

Trust me when I say that beating the deck was both a physical and mental struggle. It took me just over an hour to hit that hammer against the tire 1252 times. About half way through my body was telling me to give up, I'd beat the deck another day. My brain on the other hand was telling me that I began the day telling myself that today was the day that I was going to complete this feat and I needed to do what I told myself  I was going to do. It took a lot, but I pushed and pushed and beat the deck the day I decided to.

I hope this story gives you a little incentive to go after your dreams, whether you are a butterfly or not. Us butterflies go through a lot of hurdles, but we can always jump over them...never go around. May we always soar!!!!

How To Adapt A Workout

Ok, lets be honest here, sometimes because of our size, us beautiful butterflies can't always do excercises how they were meant to be done. This only means that we have to modify them a little bit. I'm one of the lucky girls who has a trainer for a boyfreind so he helps me modify stuff he notices is a little difficult.

One of the things my boyfreind has suggested to me,( becuase he has noticed that my short arms and legs make excercises such as the bear crawl and crab walk difficult) is to simply hold the pose instead of actually trying to move around. For instance, instead of actually doing a crab walk, (which is when you have yourslef up off the ground wtih your back to the floor) simply do what is called a table maker. One other brilliant piece of advice he has given me is to make sure to do a lot of work on my legs. They can be a very valuable asset.

Another piece of working out that is extremely important is remembering to breathe. Sometimes you'll see these huge guys try to lift an enormous amount of weight in the gym....except they almost look constipated! That's because they haven't completely worked out a good breathing pattern for when they lift heavy weight. Having a good breathing pattern can also help prevent various injuries in the gym. There are various books out there on how to properly stretch before and breathe during a workout....please be safe.

Another aspect to us butterflies having to sometimes adapt, is switching up our arm positioning. Remember, if it doesn't feel quite comfortable, change where your arms are so that you are more comfortable doing the excercise. If the position of your arms is not comfortable you could hurt yourself.

One amazing piece of equipment to workout with that I have found is a called Lifeline Cables. They are very versatile and easy to adapt to your needs. You can do every single excercise that you go to the gym for and use machines with these cables. The best part is, you don't have to worry about those pieces of gym equipment such as the overhead press machine that the handle is too hard to reach for. I've only been using these cables for a short time, but they are amazing!!!

Well ladies, I hope these tips and tricks help you get or stay healthy. Sometimes instead of asking the world to adapt to us, we need to adapt to it.

May us butterflies soar!!

What Can Tell You About Adopting

One of the things I have talked about in previous posts is that us butterflies have plenty of other opportunities to become mothers. One of these very key opportunities is through adoption. Now don't get me wrong, adoption is not the first choice for everyone....but it is my first choice and I will explain why. I will also give you a little information on how to go about it yourself should you choose to.

Adoption is my first choice for more than a few reasons. The first reason is because there are way too many children in this country already who need someone to show them love, kindness, and that the world can be an amazing place. The second, is that when you compare the cost of adoption and I.V.F they are roughly the same. If you ask me though, you have a better shot at becoming a parent through adoption than you do through I.V.F. Now, don't get me wrong, I completely understand why someone would want to choose I.V.F for themselves. I would be lying if I didn't admit that at some point I had considered it myself. In the end though, adoption won out for me. One last reason I have chosen adoption is because the government(U.S) pays you back a certain amount of the adoption fees when you file taxes the following year. I know that sounds like a selfish reason,but what I would do with that tax break is put it in a college fund for the child.

Be prepared, because adoption is a very lenghthy and difficult process. The first step I would reccomend taking is doing a simple google search for a local adoption agency. Do your research though, find reviews and maybe even try to speak face to face with someone who has used that agency. The agency itself will help guide you through the process, it is part of their job. The next step I would reccomend is finding a lawyer who specializes in adoption. Very few people know this, but lawyers are required by law to log a certain amount of "pro-bono" work each year......there are a good amount of lawyers who make doing adoptions a good part of that log because it's their way of giving back to the community. After you've found your agency and lawyer, set an appointment for an in home study. Your lawyer and agency will help you know who to call. This is the most difficult part of the process. When you go through an in home study they literally look at EVERYTHING. They observe how you and your partner interact, the cleanliness of your home, if you have enough space, they look at your finances, they do a federal and state background check, they dig into your medical records...especially if you have a psychological history. After the home study it's mostly waiting on a bunch of paperwork to go through the court and is a giant waiting game.

One way to make the adoption process go quicker is to be a foster parent first. You still have to go through a bunch of stuff to get certified and all that, but because the steps for fostering and straight adopting are pretty much the same, it makes everything go faster with the courts once an adoption is attempted.

There you have it folks, what I know and can help you with when it comes to adoption. It's not a whole lot, but I hope it was helpful. This is not the only option we have, but it's a pretty darn good one.Until next time folks.....May us butterflies always soar!

How To Become A Little Stick Of Dynamite

Alright ladies, time to get extremely real. How many of us have heard throughout our lives those typical, somewhat condesending remarks. We all know the ones..."You can't do that, your too small.", " You can't lift that, your too weak.", or comments like " You can really do that?". Now, us butterflies have many disadvantages, but we can knock those disadvantages out one by one simply by turning ourselves into what I call little sticks of dynamite.

Now, we all hear it from our doctors that we need to live as healthy of a lifestyle as possible, because we already have so many health issues. Whether we want to admit it or not, our doctors are right. This is a lesson I have had to learn the hard way. When I turned 21, my doctor had to put me on medication for diabetes. Now, I'm not full blown diabetic but I was close enough to need medication. It started hitting me how bad my health really was. I would go on and off diets and excercise routines for a good 4 yrs before I finally thought to myself " What the hell am I doing? I still eat like crap, I haven't really lost any weight because I keep losing and then just gaining it right back. And, im still on the diabetes medication. If I don't wake up soon and truly fix this, I will end up diabetic."

So I began slowly changing my eating habits on my own. I stopped going through the drive thru after work do much. I also started packing my lunches for work sometimes. You see, I work in a grocery store, so when I don't pack a lunch and buy something instead, there's the evil service deli. That food back there is just as bad for you as a drive thru. Slowly over a couple of months I lost about fifteen pounds. Then, I met my amazing boyfreind Ben. He just so happens to be a former personal trainer. He should me some amazing workouts that even really out of shape people can do pretty easily. He started out showing me sort of yoga routines. Then we went to something called VRT(visual resistance training). VRT has got to be one of my favorites! You don't need a single piece of equiment! All you do is picture in your mind what you want to be lifting, then you flex your muscles as if you are acutally lifting whatever it is you want, and put your body through the motion. We have fairly recently started doing workouts where we use a deck of cards to determine our reps, and swing a sledge hammer against a tire! That one is awesome too! You really get out some aggression. If you would like to learn more about his training methods, visit Ben at powerandmight.blogspot.com or his full website at ben-bergman.branded.me. He has many tools to help transform you into that stick of dynamite.

The other reason I decided to turn myself into a stick of dynamite is really quite funny. I love to see the look on peoples face when they see me do something physical and say " Holy crap! You are tiny, and very strong!". For example, one day I was helping a few of my checkers out by bagging groceries for them. There was a customer who needed a twenty pound bag of ice and a ten pound bag of ice. I grabbed both bags of ice at the same time. The child that was with the customer said " Wow mommy, she is really strong!" and the mom replied " Yes, she is very strong!". It's moments like that that make me feel amazing. And I'm just starting my dynamite journey. I can't wait to see how strong I become in the coming months.

Us butterflies may always be small, but we don't always have to be weak. You don't need a personal trainor to become that stick of dynamite either. Just visit my boyfreinds pages and you will be given many tools to help you become a stick of dynamite all on your own.

May us butterflies always soar!

How To Survive An Average Sized World

As many of you have most likely experienced, us butterflies sometimes have a difficult time reaching things or doing certain things thanks to our being " vertically challenged " if you will. Throughout my life, I have learned little tips and tricks that I would love to share with everyone. The first and most important tool we all need in our homes is......a step stool! believe it or not it comes in handy more often than you think.

I personally use a step stool several times a day. to reach high cabinets, get that last little bit of laundry out of a top loading washer, clean high places, and soo much more. When I was younger though, the step stool didn't even help much. One of my chores as a kid was of course to unload the dishwasher and put everything away. Well, I was so small that I had to use the step stool to get onto the counter and then be on the counter itself to put everything away. My dad didn't like that one too much at all. He was always afraid that I would fall off the counter and hurt myself. I even had to use the step stool to just wash the dishes, so i could see over the sink well enough.

Another interesting obstacle for us butterflies is driving. At least from what I have been through, it's hard to find a car that I can both easily see over the dashboard and touch the peddles. I usually end up drivng little compact cars. Although, one time I had this really awesome SUV. I could get away with driving because both the seat and the gas peddle moved and adjusted. For some cars, I just throw a pillow under me! There are many ways for us to be able to drive though.

The most interesting place to try to adjust, at least for me, is work. I work in a grocery store, so lots of things are high. When a customer asks me where an item is, and it is on the top shelf, they usually just smile and thank me for showing me where it is. I wish I could go that extra mile though and actually get it down for them. My work place is pretty cool though, I'm lucky. They have step stools in almost every department to help me out. Some work places aren't like that though, so you might want to just ask your boss if its ok if maybe you just bring in a step stool.

There are many obstacles for us butterflies already, so let's not continue to make high places another one. I hope these tips and tricks help. May the butterflies soar!

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.

My diagnosis

       My diagnosis story is most likely different from anyone elses. Not because the story is way out there or anything, but because each of butterflies are unique and so are our stories. I was diagnosed with Turner's Syndrome at the age of five. It all started with a simple check-up appointment with my pediatrician. He was listening to my heart and he heard a murmur in my heart. As my mom tells me, he thought he had heard the murmur when I was two, but dismissed it.
       
     My pediatrician then sent my mom and immediately to a cardiologist. I was immediately brought in for an echocardiagram. After the echo was done, we got to see the doctor and discuss what he saw on the echo.He began telling us that he didn't see anything major wrong other than two of the three valves on my aorta were fused and I had a very small pin hole that needed to be looked at every so often. The particular cardiologist that my mom and I were sent to just so happened to have a few patients who had Turner's. As he was speaking with my mom and I, he suddenly asked if he could take a closer look at my hands, feet, and neck. After he looked closer, he told my mom that he didn't want to alarm her, but he wanted to send my for what is called a karyotyping test to see if I had something called Turner's Syndrome. He then proceeded to explain to my mom exactly what Turner's was. He also explained that there were two different versions of Turner's, Classic and Mosaic. He also explained the difference between the two.
         
     The next day, my mom took me to have my blood drawn for the karyotyping test. A couple days later we got a phone call that the lab had messed up while performing the test and they needed us to come back in to re-draw my blood. My mom was of course a little angry. We obviously went and did the re-draw. We then had to wait like a week to get the results back. My mom was very anxious and worried theat entire week. She didn't totally understand what could possibly be wrong with her little girl. Then the call came and it was official.....I had been diagnosed with Mosaic Turner's Syndrome.