When to tell....

One of the most frequent questions I see Turner’s girls ask of each other is when to tell someone you are dating about it Turner’s and all that it encompasses. For me, I have always told a guy almost right off the bat. It tends to weed out two things……the first being if they are truly interested in getting to know you for you, the second is if they are really ok with everything that having Turner’s entails.

I have had two very different experiences with giving this information. When I told my ex-husband he seemed really ok with everything I was telling him. He had me soo convinced that of course we got married. Well, when it came to the time in the marriage that we really started talking about expanding our family he started showing his true colors. He started throwing the infertility in my face when we would get in fights. He had no idea how to be there for me every time a doctors test would come back with bad results. I was totally on my own.

With my boyfriend, he was absolutely amazing and understanding. I told him about a week or two into the relationship. Not only was hej sincerely interested in the information I was telling him, he looked stuff up about it all on his own! This really touched my heart. Now that we have been together over a year, we have been talking about what will happen in our future. We have discussed the children situation many times and every time I walk out of that conversation feeling completely supported.

I hope every single one of you butterflies has an experience like my second one. If you start hearing things that point you into thinking that the guy you are with is not really ok with going through adoption or IVF or any of the other options we have…then I’m sorry but you might wanna end that relationship, because as soon as one of those processes start they are going to get very overwhelmed and start saying things that are hurtful. I kind of check-in with my boyfriend every once in a while and ask him if he is still sure he feels he can handle one of these excruciating processes…every time it’s the same answer…” of course babe. We will be going through this together.” Part of our responsibility is doing our research and thoroughly explaining to the guys what these processes are like.

I hope this advice is helpful, I also hope it doesn’t scare you….that was not the intent. We must also have faith in our men ladies. Faith that they are being honest, and that from the beginning they understand what this entails and that they can truly handle it. May we always soar!!

Self-Esteem Booster

One issue that I have noticed, not only in us butterflies but in ALL women is self-esteem. This world is full of women who don’t know their full potential, feel bad about themselves, don’t think they are pretty, or don’t think they are worth a man spending time on them.

One thing I want ALL women who read my blog to know is that you are always worth while. You are always beautiful. You should never feel bad about yourself. You are always worth people spending time on you.

There are many possible reasons for low self-esteem in women. Whether it’s not getting approval from either one or both of our parents, a significant other that constantly tells you awful things about yourself, a sibling telling you hurtful things, whatever it is that puts your self-esteem low try to reverse it once you catch it. You catch it by realizing when think stuff to yourself like “ what guy would want to date me?”, “ nothing looks good on me!”. There are tons of negative thoughts that you could catch going through your head.

Now, how do you reverse it? First off, if you are in a relationship with someone who is constantly telling you negative things about yourself leave! Second, and this is gonna sound really weird but I swear to you that I have actually done this before, look at yourself in a mirror…..now repeat to yourself(whether outloud or in your head) I am worth while. I am beautiful. I am special. Just repeating those things can help. One other thing I do is to pick one thing that I enjoy to do and do it for at least 20 minutes everyday. It doesn’t have to be the same thing every day. It can be several different things, the important thing is that you do one specific thing for yourself for at least 20 minutes.

One thing I want to talk about is that we women need to always lift each other up, not tear each other down. Shoot, we should do this as humans not just women. It absolutely astounds me that we as human beings can talk crap behind each other’s back and destroy each other so easily. There is enough bad stuff in this world. Let’s not add to it by tearing each other apart. It’s just one small thing each of us can do to possibly make this world a little bit better.

I hope the tips I gave to help your self-esteem really do help. The way I see it is that if these tips helped even one person feel better about themselves then I’ve helped make a difference. As Ellen Degenerous says…Be kind to one another.

Persevere

Persevere. It’s a word we hear a lot of today, but don’t always know the true meaning of. People sometimes think that persevere is a synonym for success. Persevering can lead to success, but it’s not a direct synonym. Persevere to me means pushing past all the hard, disappointing, depressing, stuff in life to have a happy one no matter what.

Us Turner’s girls do have to persevere a lot. We push through things like having to go through heart surgery, putting ourselves through IVF or even going through the adoption process. We put ourselves through second guessing guys intentions sometimes. We deal with adapting our lives to our height. Bottom line is that us butterflies end up having to go through a lot of difficult stuff.

We are put through it for a reason though. That reason is because we CAN handle it. As much as we fight it and say that we simply can’t take anymore, we always get through it. We get through because we know the great good that will come at the end. You persevere through IVF or adoption, you get the absolute joy of being a parent. You get through the heart surgery, you come out feeling ten times better.

I guess what I’m trying to say is, no matter what hardship you are going through right now, know that you will get through it BECAUSE you are a butterfly. Do yourself a favor and think back to all the stuff you’ve already gotten through……amazing isn’t it? If you can get through all that stuff, what’s stopping you from getting through this? You can achieve and persevere through whatever you put your mind too. Have a good one butterflies, and may we always soar!

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!