Youtube and Friends perspective of FA

I started a youtube channel and I couldn't be more excited but at the same time nervous. I know what you are probably thinking by the title of this post...another person starting youtube. Yes you are right I am doing it, and if you know me at all I am an extremely hesitant person. So jumping into something like this not like a usual thing for me to wanna do. But I want to raise awareness for FA so I am going to take this jump into something that seems very scary. I mean putting myself out there for the entire world to see is terrifying, but I am going to try.

I am super excited to take this leap and try something new and I would love for you guys to check my channel out. I will be posting lifestyle with FA type videos every week.  So stayed tuned!

This weeks video is all about a friends point of view. I sat down with one of my best friends Lauren to find out what she had to say about FA. 

Here is what she had to say!

https://youtu.be/C9eAhtpp_AA

I will say one thing and that is that everyone deserves a friend like her and I am truly grateful that she is in my life.

I hope you enjoy the video and subscribe to my channel for more!

https://www.youtube.com/channel/UCViE3a_QPR29lLFWxn8rBBg

Growing

I was hit with debilitating, dream crushing news when I was just 13 years old. 6 years ago around this time of year I was diagnosed with a rare, neromuscular disease called Friedreich's Ataxia which has no cure or treatment. For the next 5 years I went through a period where I did not want to talk, hear, or even think about FA. In my mind if I did everything I could to ignore it, it would eventually go away. Everyone that I have talked to with FA says they go through that phase and for some it lasts longer than others. That phase of hopelessness, loneliness, and denial. 

I had always been curious what the FA community was, and then one day I decided that I didn't want to live like this. Little did I know my life was about to become a whole lot brighter. I slowly started following people with FA on instagram and dipping my toe into the water. I began to understand the importance of being a patient advocate, and raising awareness for an FA. 

I now participate in clinical trials and studies, I lead patient support groups, and I am always willing to raise awareness. Never in a million years did I think that I would be doing what I am doing today and I feel like I am only starting. I know I wouldn't be where I am at without my family, friends. the FA community, and my almighty God.

Just know that whatever you may be struggling with, or however deep the hole you're in. There is a light at the end of the tunnel and there is always a way out, and everyone grows at different rates.

For I know the plans I have for you, "declares the LORD" plans to prosper you and not to harm you, plans to give you hope and a future. -Jeremiah 29:11 

Inspiration

I have had this topic in the back of my mind since the very first day someone called me an inspiration. And I have contemplated writing about it because I wasn't sure how people would respond to it. That is a worry of mine with every blog post that I write and put out there, but it is just something that comes with the territory I guess.

The very first time someone called me an inspiration, It felt very weird. I was not sure how to respond to that. I know it was meant to be a compliment, but my heart broke a little because I knew they really didn't know how to respond to my diagnoses which is understandable but it hurt and I didn't know why. I don't really think that you ever completely except something like FA. But it does get easier to understand and with that makes you appreciate the life you were given. I did not want people to look up to me because I was scared to accept my reality myself.

Yes I have to deal with a life shortening, debilitating disease. But I did not choose this life. I did not choose to be an inspiration. But one thing I do know is that I am going to choose to stand up and fight the battle that I was called to. I was worried that if I accepted the fact that I inspired people I would let people down but instead it inspired me. The thought of people looking up to me makes me wants to be better not only for me but for those people too. Something that used to be heartbreaking for me to hear, I take and use it now as a push to keep fighting when I want to give up. Sometimes you have to take a step back and look at the lesson that you are going through and look at it as a blessing. You have to use your hard times to help you grow.

As things become clearer for me and I become more accepting and try to be more of an advocate for FA, I realize the importance of sharing not only the good experiences but the not so good ones too. The whole point of this blog is to try and help others as well as helping myself, having a space to freely share what I am going through and also hoping to reach others that may be struggling or going through something similar.

Allow whatever you are going through have the capability of making you an inspiration to someone.

-M

That's what I love about Sundays

P.S. if you read the title of this post like the song we are best friends.

I feel like everyone dreads Sundays and especially Mondays. Well I can understand and relate to the dislike of a Monday but I think Sundays should get a little more credit.

Sundays should be peaceful and restful, and if they aren't, then do something about it.(You have more control than you think.) I never really appreciated this feeling in the past but it all seems to make sense now. That feeling of being content, being refreshed.

I love being able to sit down and just write and not having to worry about anything at all. The weather is warmer, the sun is shining, and the birds are chirping. I know this may seem so simple and small of a thing to be so happy about but it almost gives me a giddy feeling.

I am going to challenge myself and you as well to appreciate the small things this week. Be happy and thankful about the little things in life, and trust me I know this will be a struggle for me because sometimes life just sucks. It's that simple, but it's also just as simple to change your attitude and to find the tiny ray of sunshine in your day.

I'm feeling a little bit motivational right now, if you can't tell!

But in all honesty, everyday that you wake up is a blessing. Don't take a day that you are alive and breathing for granted!

-M