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

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

Overwhelming Tuesdays...

It is Tuesday night and I am soaking in the bath. I love baths. I love lightning a candle, putting on some music, and just relaxing, thinking, and praying.

You would think that being alone with your thoughts could do more harm than good especially if you are an over thinker like me, but I seem to enjoy it very much. It’s like just having a conversation with God about just everything, every little thought running through your head.

With it being a new year, it can symbolize a blank slate or a fresh start but it can also be overwhelming and daunting. For me, there are so many things that I want to accomplish or goals that I want to fulfill. 

Tonight as I sit here and write this, I think about how amazing our Lord is. It just astounds me how He just knows. His presence puts my mind at ease; my heart at peace. 

I used to think that if I wasn’t sitting down and deticating specific time to “pray” I wasn’t doing it right, but in all honesty...what is the right way to pray? Or that I was a bad Christian? 

Sometimes just saying “Lord you know what is on my heart, and I trust in you to lead me to what you know is right.” It doesn’t have to be an elaborate prayer with a ton of fancy words. I am always in a state of prayer, constantly having small conversations with the Him can be the exact same or even more than getting on your knees and praying. 

And that is enough. 

I hope this message helps someone out there feeling the way I did.

Happy Tuesday!

-M

An end becoming a beginning

FA goes a little something like this.

Sleeping for 13 hours but not feeling refreshed or rejuvenated whenever you wake up, having to go lay down and rest every 15 minutes while doing your hair and makeup, feeling like you ran a marathon just by walking up or down the stairs, taking 20 minutes to carefully change your earrings.

Having FA is a constant mind game of planning out what is worth using my energy on that day. Mustering up the energy to walk from the house to the car. It wears me out to brush my teeth on some days. Or having to say no to something because you are literally running on empty. 

When people say “I’m tired” they truly do not understand the definition of those words. 

I don’t use my wheelchair because I can’t walk. I use my chair because it allows me to not expend all or my fuel getting somewhere and not being able to enjoy it when I get there. 

For a while I looked at the chair as an end point. I looked at it as I was giving up. I looked at it as a bad thing but it was quite the opposite. The chair is a tool, an energy saver, and a beginning of something new.

Sometimes you have to loose something that is valuable to see and know something bigger and better exists. 

It’s 10 days until Christmas! (I don’t know if anyone else is counting but I sure am!) As the holidays are a special time, they too symbolize an end and a beginning. An end of a year, and a beginning of a life, the birth of our savior. 

I take this time to reflect and really think about my year. I have learned so much. God is working in my life and teaching me so many lessons. Some that I like and some that I am not to fond of. Some of the lessons have caused pain and heartache, but even though the obstacles I have walked through may have not been part of my plan, I have been made so much stronger through it all. 

I can say that I have become so much more confident in the Lord, knowing I live my life for Him and only Him. In that I have become more confident in myself. I truly believe He holds my hand as I walk through the fire and knowing that brings me peace. 

Here is to an end become a beginning...

-M

Opportunity awaits!

FA is tough. It’s not all rainbows and unicorns. There is a lot of ups and downs. I would not wish it on my worst enemy.

With that being said I also would not trade it. Throughout my journey with FA, I have learned so many life lessons, met such strong individuals, and have had amazing experiences and opportunities. 

The Make A Wish foundation supports children with life threatening illnesses. They grant any wish a child may have. Big or small. Bringing imagination and wonder back into a sick child’s life. 

Last September I was honored to have my wish granted, and was sent on an 8 day Mediterranean cruise to Italy and many cities in Greece with my family. Even over a year later I still cannot put into words the breathtaking views, amazing people, and magical moments witnessed on this trip. I still find myself daydreaming about sitting on the beach in Mykonos or riding a water taxi in Venice.

After my trip I became a Make a Wish ambassador. As an ambassador I get to do some pretty incredible things. And I am given opportunities that I couldn’t have even imagined. 

The latest was Make a Wish gave my family and I a chance to visit Enchant Christmas premier in Arlington Texas. Making its debut in the USA, Enchant has the worlds largest Christmas light maze, ice skating, food trucks, and all things Christmas. 

It definitely put me in the holiday spirit and it was a wonderful way to bring in the Christmas season. 

Go to enchantchristmas.com and snag some tickets for you and your family! A portion of your purchase will be donated to Make a Wish and other charities!

-M

ask and you shall receive

Whenever I feel called to write a post on my blog or to share something on social media I always want it to be positive and have a positive message in the end. Sometimes I will already know exactly what I want to say and other times it will take me a week to find the words that I want to say. Often times I will pull inspiration from pinterest and the tie it in personally to what I am feeling or what I think it is that people need to hear at the time.

I came across this and it pretty much stopped me in my tracks and sent a chill up my spine. 

I was guilty of this. And I am sure you are too.

I kept telling myself that things just happen but God's voice was intended to be much louder than mine. The questions that I had been asking, God would answer them. But I would ignore them because I didn't want those signs and red flags to be true. 

His answers were not what I wanted but they were what I needed.

The Lord knows exactly what you need, he knows what your heart needs, and what your soul needs.

God does not shout or yell. His words won't come to you in the thunderstorms or earthquakes. But he speaks softly. When the wind blows gently through the leaves.

Expect the unexpected.

Be still and prepared to receive His word and His message.

God will send only what he knows you need. 

I hope this message finds you all well and is what you need tonight.

                                  

                                                            -M

Succulents

I might have a slight obsession with succulents and if you ask anyone around me that is definitely an understatement.

I was thinking of a way I could pull inspiration about these little plants and write about them in some kind of way.  I googled succulents and I know you are probably thinking "this girl is crazy!" Which I probably am. But hey, everyone has a little crazy in them. 

Anyway what I found was pretty cool...Other than the fact that they are able to survive incredibly harsh environments, have adapted to hold copious amounts of water, and are very hard to kill. Succulents are often attractive because of their striking and unusual appearance. 

No, I promise this is not a research paper, but the more I read about this, I couldn't help but notice all of the similarities that succulents have to myself and others. And yes I am comparing people to plants, but think about it. Why is everyone so attracted to plants, succulents, or flowers? Because it is familiar.  We have the ability to adapt to our environment even if it may be harsh. We are fighters, we are hard to kill, and we all are striking and beautiful.

The thing that attracts me most to succulents is that they are different. You see, being different is okay. I am learning to be okay with the fact that I am going to utilize the aid of a wheelchair, that I am going to be different. And much like a succulent,  I will still be striking and beautiful. I will always adapt to whatever is thrown my way and I will not be killed easily. I will always fight. Because we are all fighters.

I challenge you to try and relate something that you love or like to everyday life and it's okay if it is random like mine!

Try to see the good in everything.

-M

Mid week motivation

Here’s a little mid week motivation for you...

Give that person a smile or a wave when you pass them in the grocery store, just do it. You could make them feel amazing! And you should know that the kindness that you are spreading through a simple smile, will multiply for miles!

You never know what someone else is going through. Do everything with kindness in your heart, and I guarantee you will get some in return!

Be kind, always.

-M

Everything will be okay.

I usually don’t write posts like this, but it’s been weighing heavy on me and God has been calling me to start sharing my life and my journey in hopes to maybe help someone else. My FA is slowly getting worse. It is getting harder to do simple things and it takes longer to do everyday tasks. I am more and more off balanced every time I go out. It takes every ounce of energy to just stand up. And that’s just the tip of the iceberg.

Yesterday was the first time that I used my walking stick to help with stability. I wasn’t sure how this was supposed to help me stay upright, but I gave it a try with a very close mind. FA takes a tole on you not only physically but emotionally and mentally too. I always told myself I shouldn’t cry, crying makes me seem weak. So I would be stoic and strong and cry alone but I wouldn’t do it often. Then I would explode...and be an emotional wreck and push the people closest to me away. Every time I have that explosion of emotions I would feel better after. I’d feel hopeful, and It seemed like after I cried I would see the world differently. Better. 

Human tears contain a natural painkiller called leucine enkephalins. Which is why you feel better after you cry. Cry. It will be okay. Having a bad day? It will be okay. FA absolutely sucks. Slowly losing my abilities absolutely sucks. But. It will be okay. I know I am strong..the Lord is strong and mighty and he only gives his hardest battles to his strongest soldiers.

Everything will be okay.

-M

High School Graduation

These past 2 weeks have been a complete world win. We have had family in town, parties, and lots of fun. I am officially a high school graduate. It been a tough ride and I could not have done any of it without the help of my family and loved ones. They are my rocks. They hold me afloat when I feel like I am drowning. I love them all from the bottom of my heart.

Walking is difficult for me and I need assistance but I was determined to walk across stage and receive my diploma. I was incredibly nervous, but I did it and it all went smoothly and I was pretty proud of myself.

I was excited about the ceremony but was more excited about the party. It turned out great and was an absolute blast!

and to top it all off....my brother broke his nose at the party! 

(he is fine!)

-M

It's been a while...

It has been a minute since I have posted on here. Whenever I would post on here I kinda felt more organized and structured and for a while things have just been hectic in my life and I am kinda sad that I didn't really prioritize the time to document things on here. I am really going to schedule my time to blog because i love writing and keep a journal in a way.

So first off I am finally finished high school and am on summer break. I graduate in about 2 and a half weeks. YAYY! A lot of my time was being used up to focus on school. My plan after graduation is to take a semester off.  Many people have told me that is a bad idea, that I will get to comfortable, but I really need to start driving. and I know you are probably thinking "you are 18! and you do not drive yet?" no I do not drive yet. I do have my permit, but I have a huge fear when I get behind the wheel and it just makes me very anxious. But it is just a hurdle that I know I can cross and get over. 

After I can drive it will give me a lot more independence and I will not have to rely on anyone to get from place to place or to college classes. I am wanting to get my teaching degree in elementary education, to become a 4th or 5th grade teacher. So a few more updates will be coming soon.

I am really excited to be back to blogging and document everything on here. That's all for now!

-M

IN THE BEGINNING...

At the beginning of starting my blog I wanted to make it sorta like a diary but some of the things I wanted to share were too private or I just felt uncomfortable about posting them. But the more I thought...wasn't that the whole reason I started my blog was to get out of my comfort zone and open up a little bit more? And maybe help others along the way.

I know my situation is a bit different than others but what if another teenage girl is going through similar things? What If the least I can do is share what I am going though? To help someone else along the way. Just thinking about that makes my heart smile!

Life isn't always happy and it isn't always sad but it is alway relatable. I hope when people read my blog they find some connection to their life and what they may be experiencing right now. It is alway helpful for me to know that you are not alone and that someone out there is crying with you or laughing with you. 

-M

WHAT IS LIFE TO YOU?

I have never been a big reader but have always been a writer. I like to think of life in other ways than just life. I like to think of it something creative and more than what it really is.

A precious light that you are born with inside your soul. Waiting to be fed and nurtured. Waiting for you to see that little light and turn it into a raging fire. For you are the only one who holds the gasoline to make it burn.

Like a story book. Each day a paragraph, Each week a chapter. Think of the ups and the downs the trials and the tribulations. Think of the Lord who will one day read your story at those Golden Gates. He is going to judge and question the way you have written your story.

So think now, am I using this life to help others before myself? Am I going to turn this light inside my soul into a raging power?

-M

I AM A MUTANT?

For a while I tried to hide this and not really face the fact that this was true. I wanted it to go away and thought that if I shut it out that it would eventually disappear.

The "it" that I am referring to is a rare, genetic, progressive, neuromuscular disease called Friderich's Ataxia (FA). When I say rare I mean really rare. It affects about 1 in 50,000 people in the United States alone. It attacks many parts of the body including the muscles and nerves also motor skills, and losing the ability to do everyday activities among many other things.  It forces people into wheelchairs within a few years of being diagnosed. I was diagnosed when I was 13 but I am now starting to see signs of progression.

There is no cure and no treatment to this disease. It is important to keep yourself active in order to keep the muscles used to moving correctly.  Many people believe that things like supplements and more holistic things will slow down the progression of this disease. Scientist believe that there is a cure or a treatment on the horizon. Keeping an open mind and staying hopeful and optimistic is very important as well. Raising awareness so people know about it and are educated about this disease is crucial.

I am the person who never asks for help and I am very independent. So losing the ability to do small tasks everyday has been hard for me. I hate having a lot of attention on me or people feeling sorry for me
or having pity on me. Things like walking and going up and down the stairs is becoming very challenging for as well.

So seeing myself  and experiencing this I know now that I can't hide from this anymore because it isn't going to go away. I have to learn how to deal with this and know of many people with FA who have extremely happy and normal lives. It's just going to be hard for me to adjust to my "new" normal.

People take for granted the very simple tasks in life and I was one of those people. Because it can be taken away from you in a split second. I know that the Lord has a plan for me and I have complete faith in Him that He knows the greater plan.

I feel that it is time for me to be open and share this because it is going to be a big part in my life and I know that it is going to change my life for the better.

To find out more about FA please visit https://www.curefa.org/

-M

ANYTHING IS NEVER NOTHING

I have figured out a lot of things over the past few weeks. I have been told a lot of things and I have been given a lot of advice but still it is hard for me to understand the purpose of this event.

When someone who you thought was important and you thought cared about you decides to leave and walk away it is only human nature to question yourself and wonder if you caused it. But as I question myself and wonder what I did wrong nothing comes to mind. I can't blame myself for what has happened and can only grow from this experience. 

Experience- knowledge or wisdom that is gained from what one have observed or encountered.

Over the course of a few weeks I kept telling myself it was a waste and it was all for nothing but even though it may have been a hurtful or sad experience, anything is never nothing. You can always learn something from every experience. You will gain wisdom and knowledge. Ask yourself the next time you are going through tough times or if you are going through them right now. What is something that I can learn from this? What is something I can gain?

The thing that I learned is that people will come and go for reasons that you may not know but stay true to who you are and learn from ALL experiences.

-M

AM I REALLY GOING TO DO THIS?

Hello to anyone who is actually taking the time to read this!

I am Madelyn and I am 16 years old. I am not really your average teenage girl, the one who goes out with friends and cares very little of everyone around them. I am more of the quiet one who sits in the back and minds my own business. I am the one who pays attention to sights and sounds of what everyone often looks past. Making sure that I am aware of my surroundings and to look at the beauty in everything. 

I have always been a very organized person and have always enjoyed writing and journaling. I have tried to keep diaries just like many others have, but I want to be able to share things and stories with others as a way of communication but also documentation for myself. I feel words have so much power and can be interpreted in many different ways. Just like a picture or a painting. Some may see it as a masterpiece but others may see it as trash. Stories and words are the same thing.

I am a quiet person but I have a lot to say. I think this is such an awesome way to keep a diary of my life and what I enjoy. Even though a diary is something that is meant to be private. It's kinda like a public diary I guess! It's time for me to do something different to make a change and to get out of my shell. Maybe starting a blog will be that change!

-M