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

Rare disease day

Today is a day that I have known about since I was 13 and diagnosed with a rare disease called Friedreich's Ataxia. It was a day that I knew existed but I tried my very hardest to block out of my mind and not think about. I thought that if I did that, if I didn't think about FA it wouldn't be real. But I had to accept my reality. I had a choice. How would I react to my life?

One of my main goals this year was to be more of an advocate for FA. To accept the battle God called me to fight. As we are approaching the third month of the year, I have quickly realized that the goal that I set for the year was also a daily goal. I have a choice whether I want to get out of bed each morning. I have a choice to be happy each day. It’s all about how we react.

I want to feel confident when informing people about FA and to raise awareness. I don’t want to feel embarrassed or shy when asked about my illness. 6 years after being diagnosed I am always learning and adapting to reality. 

Here are some insane statistics about FA. 

1 in 100 people carry the FA gene. If 2 people with the gene have children, they will have a 1/4 chance of having FA. 5,000 people in the US have Fredreich’s ataxia, and I am one of them. There are only 15,000 people in the world who have FA. 

I was one of the “lucky ones!”

Rare disease day may just be another day for some people but for other it’s such an important day because it allows the light to be shown on the rare ones. 

I have chosen to react to FA by staying positive and talking about it, no matter how hard or challenging it is because I have a voice and I want people to know it’s beautiful to be rare. 

 -M

Weekly recap

This past week has been long, busy, and rough. 

On January 17th, my mom and I flew to the University of Florida. I am enrolled in a study there for FA and go every 6 months or so. I kinda feel like an expert traveler when I go because we have been going for about 2 years. I was planning on recording my trip and making a video about it just because I think that would be more personal than writing about it but we were there for about 36 hours and barely had any time to eat! I had a full day of testing for the study. I do a vision test, the 9 hole peg test (which is extremely hard to do) and a heart MRI, as well as lots, lots more. I absolutely love going to Florida and even though when I am there I am pretty much a lab rat, I love seeing all of the doctors and nurses. They are the best!

On January 22nd, I had another full day of testing at UT Southwestern in Dallas. I just transferred from Pediatrics to Adults because I am now 18.  Since I have new doctors, they wanted new testing. I had a pulmonary function test, heart MRI, and a heart monitor that I am wearing for the next few weeks.

This was the pulmonary function test. I had to breathe into a tube while I was inside of the big plexiglass box.

My favorite place to eat right now is Zoës Kitchen so my mom and I went there for lunch. It was delicious as always and so was this enormous cookie!

 This was in the hospital lobby and it looked so neat so naturally I took a picture!

On January 25th, Both of my parents came down with the flu, it is running rampid this year. So I quarantined myself in my room, doubled up on immune booster and, washed my hands every 5 minutes. I did not want the flu and so I was going to do everything not to get it.

On January 27th, despite all efforts I got it. So now I am resting and watching lots of Netflix. And also just let me tell you that the flu is no joke and sucks.

On January 30th, I am still feeling very sluggish and still feeling weak, but I am feeling better than I was a few days ago which is great and can only mean I am on the road to recovery.

It definitely was a crazy busy week, but it was wonderful. And a huge shout out to my amazing mom who comes with me to all of my appointments and took care of me when she was still sick too! She is incredible and I love her to pieces! 

I hope everyone had a great week too!

-M