February 2023 – Life with Charli

What is Turner Syndrome: Coping with a Chronic Condition

Picture taken from Unsplash

Hey everyone! February is Turner syndrome awareness month, and March is Women’s Month. I’ve shared a little bit about my experience with being a Woman with Turner Syndrome on this blog before, but for this post I thought I’d share a little more about my experience with the condition and how I cope with it. I hope it will be helpful to someone!

What is Turner Syndrome?

Chromosomes are one part of the body that determines sex. It is well known that a Y and X chromosome means a boy and two X chromosomes mean a girl. Turner Syndrome is when a girl is born with only one fully functioning X chromosome. The other X chromosome is either partially or fully missing. Without a second fully functioning X chromosome, a girl’s body is unable to produce the hormones she needs to develop normally.

This can lead to a lot of complications, because not only do these hormones help girls go through puberty, they are also needed for health, especially bone health. Due to the complication that can be present in Turner Syndrome, around 10 percent of all miscarriages are caused by the condition and 99 percent of fetuses with Turner Syndrome are miscarried. Some fetuses with Turner Syndrome who manage to make it to term get diagnosed at birth or even in the womb because of complications caused by the condition. I was diagnosed when I was a teenager. That is the time when many girls with Turner Syndrome are diagnosed, because that is around the time they should be going through puberty.

How I Manage my Condition

As previously mentioned, Turner Syndrome can lead to a lot of complications. In my case, two big issues are with my thyroid and my bones. Those issues have led to fatigue. I feel tired a lot. That has become an increasingly bad problem because of the responsibilities I have. Also, I’m a bit of a perfectionist, and I’m used to working hard. However, my issue with fatigue has been forcing me to pay more attention to my limitations. I’m learning to be ok with taking extra breaks and to feel comfortable with accepting help. Needing more rest or help does not mean I am weak or any less of a person.

Since I have a weak constitution, exercise is very important. This is an area I struggle with very much, but one activity I do enjoy that gets my blood pumping is dancing. Not only does music I love lift my spirits, it does the job of getting my body moving. I especially enjoy when I’m able to get a little alone time and I can just put my music on blast! By the time I’m done having fun, I feel like I’ve just finished a good workout!

How do you handle dealing with a chronic condition? Do you have Turner Syndrome too? Let me know in the comments and share any tips you might have!

Happy Valentine’s Day to Me!

Picture taken from Pixabay

I never really had much luck with guys and dating. I’ve even had the word “ugly” thrown at me several times. If you’re told something enough times, you start to believe it.

I started believing I must be too ugly and unattractive for any guy to date me, or even want to. I continued thinking that even after becoming an adult and guys started showing interest in me. Too stuck in my low self-esteem, it’s sometimes actually hard for my to even notice when a guy is showing interest in me. My siblings always make fun of me for being a little air-headed sometimes.

Due to my struggles with my self esteem, however, I haven’t really been interested in starting a relationship anyway recently. I’m happily single and working on self-love. I truly believe there is some truth to the saying that no one can love you better than you love yourself. People are going treat you the way you treat yourself, so treat yourself well.

I’m slowly unlearning what I’ve been told many times. I am beautiful, and dear reader, so are you. So this upcoming Valentine’s Day, especially to my single brothers and sisters out there, celebrate your love for yourself. Happy Valentine’s Day, and I’ll see you in the next post!

Why is healthcare so expensive?

This post was inspired by Scott over at Speaking Bipolar. His blog really gives a lot insight into what it’s like to live with Bipolar disorder. You can checkout his blog and the post that inspired my blog post by clicking here.

Scott’s post was about his struggle with getting proper care for for his mental illness. It made me really think about my own experience with getting medical care. I live in the United States where health insurance can be very expensive, and some people can’t afford to go to a doctor. With healthcare being so expensive, getting help for mental illnesses can be difficult. Mental health is not really considered a priority, so even with assistance with health insurance, there is no guarantee a person seeking help with a mental illness will be able to get the help they need.

As someone who is not only dealing with mental illness but a genetic disorder as well, I happen to be very fortunate. I was born with a condition called Turner Syndrome, and it can lead to a lot of complications. In fact, one of those complications led to surgery early last year. I also get blood tests done very frequently, along with other procedures, in order for my doctors to make sure I’m not developing any complications because of my genetic disorder. Moreover, I have been taking several medications since I was 13 years old. Now I am also on medication for my mental illnesses s well, and I go to therapy several times a week. All of my medications, tests, procedures, and therapy sessions cost a lot of money. Fortunately, I am fully covered by my insurance. I honestly don’t know where I would be today without the help I’m getting to pay for all of my medical expenses.

There honestly needs to be a better way for people to receive medical that would be fair for the healthcare providers and the patients that would allow every person to receive the care they need. What is healthcare like where you live, and what has your experience with medical care been like? Feel free to share in the comments, and I’ll see you in the next post!