Tag: Huntington’s Disease

I am not what happened to me, I am what I choose to become

sunshinetriumphsrain

After taking more time off than I anticipated with this blog I wanted to make an effort to get back at posting more frequently.  Self care is so important and can’t take a backseat because if you don’t take care of yourself you cannot take care of anyone else.

The whole blog idea was to share my experiences as a caretaker and I have so much more to share!  All of these things sprinkled with sunshine, of course!

 

I wanted to take a minute to share some personal things that have been happening. For the past five years, I have been organizing a team for the HD Hope Walk in St. Louis. Last year I was absolutely amazed when my team took first place in fundraising with over $3,500 in contributions!!  First place is great, but each year our team has been in the top spots for fundraising, which is something that has made me so proud!

 

Recently, I was asked to be on the walk board, and I, sort of, reluctantly said yes. I, like all of you, have endless commitments, a job, friends I must keep up with, on top of being a caretaker for my dad. With all of this going on, I was not sure I could take on another role without feeling super overwhelmed. Thankfully, my friends and husband also decided to join the board, and help out when they are able, and that helped make the decision so much easier!!

 

Even though things can be uncomfortable, I understand that growth comes from being uncomfortable, and pushing yourself outside your norms. And you never know what you can accomplish until you push yourself.

 

After joining the board, I found out that MY family was going to be honored at the walk this year and honestly, I was completely overcome with emotions. Just thinking about the endless hardships that we have faced because of HD, the uphill battles, and now our struggle was being recognized – it was just amazing to me. 

 

I have never done a single thing in my life for recognition; I have always just done what was needed because that is who I am. But to be recognized for it has been such a humbling experience. This entire situation has been a surreal out of body experience. It truly makes me realize that the road I am on is exactly where I am supposed to be. Every single thing that I do, even as awkward as it is for me to be this open about my life and our struggles, has brought me to this point. 

 

Just when I thought it could not get any better- I was contacted by man named Matt who works at the Huntington’s Disease headquarters in New York. He reached out to me because he wanted to interview me and share MY story. The interview would be used in our local news and I was blown away by his offer! 

 

Again, digging deep into my soul, where so many dark things lie, I opened up to him about my experiences growing up and he wrote my story. It is really hard to share one’s life experiences that have been so closely guarded, but he took my words and wrote something poetic. I was over the moon with the original plan that I was going to be able to share my story on the local Huntington’s website, but then the story was picked up locally and was shared on other local news outlets. My heart was just so full!! But then my story made it on national news and on the national Huntington’s pages. It was just completely insane!!

 

This was so amazing, and I honestly thought it could not get any better, but, it turns out, I was very happily mistaken. Art Holliday, a local St. Louis news legend, reached out to me requesting an interview. He wanted to share my story on the local KSDK news station to promote the upcoming HD walk!! 

 

When I first received the call, I froze. I was not even sure what to think or what words to say. I just immediately agreed to the interview with zero idea of how I was going to get through it. But as scary as it was, I knew that this was the moment I have been working towards. I needed to use this opportunity to share how awful Huntington’ Disease really is with a very large audience, one that was larger than I ever thought would be possible. 

 

On the day of the interview, I was a ball of nerves. I woke up extremely anxious for so many reasons. Would I be able to convey the message that I wanted? Would I choke on my words? Would I have the courage to say what needed to be said? This entire process is so extremely uncomfortable for me because I never talk about any of this very dark stuff, even with my best friends. And now I have to somehow share this very heavy and deeply personal story with a complete stranger who would broadcast it into the homes of hundreds of thousands of viewers. 

 

Finally, on my way to the interview, blaring Beyoncé ‘Who Run the World?  GIRLS’ it hit me- I was born for this.  This is my calling and there is nobody more covered in love or better prepared for this moment. I feel as if I blacked out during the interview because some of the questions he asked were too heavy to bear, but somehow I found the strength to get through it. I am immensely proud of how the interview turned out, and that I was given the opportunity to reach such a large audience. 

 

Watching the interview for the first was such a high point in my life. All of the shit I have been through was 100 percent worth it because I get to help someone who desperately needs it. Like when I was younger and had no one to turn to for support, someone out there can look to this and me for support- they no longer have to feel alone. That is what this moment really was for me. My struggle officially has a purpose and you can turn to KSDK news to see!

 

I am nobody and I came from nothing. Every single thing I have, I built on my own. The friendships and loving relationships that inspire me daily, the success, and spirit I have are all because I decided I was not going to stop until I had them. We had zero money, but my dad taught me that attitude and determination will always take you where you need to go. There was no easy way out, and sometimes, if you are as lucky as me, you get all of this!!!

 

I share this because I want you to know if you feel like nobody from nothing you can absolutely change your life. I hope this post gives even one person the strength to hang in there when things get really bad and you cannot see a way out. Remember to ask yourself ‘what is this teaching me?’ instead of ‘why is this trying to destroy me?’ Perspective is everything, and holy shit, you never know when all of your efforts will be repaid. 

 

I believe the universe is always listening and when you do good things, it will repay you. Because looooook at me now!

Here is the link to my interview :

https://www.ksdk.com/video/news/local/storytellers/st-louis-woman-shares-her-familys-struggle-with-huntingtons-disease/63-665a68a4-0b3c-4e12-b205-a67b8ac88460

ANDDD

Here is the link to my article:

http://stlouis.hdsa.org/news/-letstalkabouthd-with-mandi

  

Don’t Wear That Weight

sunshinetriumphsrain

It was not my intention to write another post so soon; however, when something hits you, you have to respond. There is no way to sugar coat how yesterday went for me. I went to the nursing home where my dad has resided for the last two and a half years, and it was a very awful and unsettling visit. On a normal day, when I walk into his room, his eyes
light up and I am greeted with a giant smile that spreads from ear to ear.  However, today, it was as if he was just looking right through me. His big blue eyes were blank and there was no smile. He was so out of it that he barely even responded to me.

dadpic

He could have just been having a bad day, since every single day is different with HD, and that is what I am praying for. However, this was not the only thing that was off, but I am not quite ready to relive all of the more painful events that happened during my visit.

Even so, no matter how awful today was, it serves as a reminder to me of my mission with this blog. The reason I am writing is to say that there will be many difficult days. Some days that will knock the air out of you and drag you across the ground, which is how I am feeling right now, but I want you to know that this is okay. Not every single day can be sunshine and rainbows, but the most important part is picking yourself up off the ground and moving forward when days like this happen. Even when you feel like you cannot breathe and there is an 800 pound man sitting on your chest, you have to dig deep to push
that jerk off and pull yourself out.

It is perfectly okay to take some time to process what has happened and to go through the emotions, but you absolutely cannot stay in the “sad” mentality for too long or it will take over.  It is up to you to fight back and not let it win.

The weight of the world we place on our own shoulders is far too great to continue to bear.

It truly is such a toxic way to live your life.  So I implore you, grab your shovel, your spork, your ladle, or whatever tool you can find and dig yourself out.

I honestly believe that part of why we consistently think, “Oh, here’s another bad day” or have this crappy Monday mentality is because we hang onto something that maybe went wrong for 10 minutes and use that as an excuse to say, “Dammit, here’s another bad day”. When 90 percent of your day was good, do not use an excuse to ruin it.

An excuse like your shower suddenly turning from a stream of hot water to a death trap shooting frozen ice cubes at you because you set out amazing Mountain fresh smelling towels in the sink and accidentally turned on the HOT water, which in turn soaked your fresh towels and drained all the hot water while you were knee deep in a hair mask that
you desperately ‘needed’. Too specific? That was actually my real-life Monday scenario.

Normally, I work out every morning before work for energy and a sense of well-being, but this Monday morning I did not because I did not set my extra early alarm (first mistake), but I choose to turn things around instead of dwelling on the negative aspects, even though the universe appeared to have other plans.

I woke up a little bit later than I wanted, the shower situation occurred, and instead of letting it get me, I leave the house 20 minutes early to treat myself to some Starbucks because I earned it. Am I right?  Boom, behind an accident by the Hostess sign and I sit on
the highway for 25 minutes making me late for work, no caffeine and no breakfast.  Once I finally made it to work, I realized I also have no food.  So, as I am only using one brain cell because I have not had coffee yet, I realized I had a decision to make, I could either A.)
let the small fraction of unfortunate events ruin my day and send me wallowing in self-pity, eating tacos and cheese dip for lunch or I could B.) laugh at those ridiculous early morning situations and make it an awesome day. Which do you think I choose?  B, the good day -duh, because I know option A is just using excuses, which will ruin (and
waste) an entire day, and I ain’t got no time for that. Therefore, Monday was a good day because I did not let those bad things outweigh the good!

This brings me to an important point I feel I must make. I have concluded that a majority of the things that we are so caught up in life are all so short-lived and stupid. I believe that if we were able to look at the big picture, we could see that they really do not matter. Therefore, my advice to you; let that shit go.

Better Together

sunshinetriumphsrain
Over the years, I have experienced many of life’s highs and lows; I  recently decided that I would begin writing a blog in an effort to share these experiences and life lessons. My hope is that my story, and what I have learned, will bring some sunshine and positivity to
those who read it. I want my page to serve as a place where one can go for a pick me up when it is needed. I also want to use this space to share my journey as a caretaker of a parent with Huntington’s disease (HD).
dad
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My mission in life is to help others, whether it is to help someone  see past their diagnosis or assist someone who is having a tough time, and show them that they can still have an amazing, fulfilling life.  I am a firm believer that the minute  you stop focusing on the parts of your life that you cannot change or those in which you have zero control suddenly things begin to look very different.

Trust me; I know what it is like living life fully aware that I have a  50 percent chance of meeting the same fate as my dad– you are not alone. I am also very familiar with the feeling of not wanting to get out of bed and deal with life, but I want to show how perspective can be an amazing way to cope with the unknown.

This idea of this blog is not new to me. In fact, I have started writing it many times, only to decide against it out of fear of exposure of vulnerability. However, I was recently searching for support materials and books on HD and found them to be nearly nonexistent. This prompted me to take the leap to ensure that those who need support or a friendly voice in this fight have somewhere to find it.

Even if this blog only reaches one person and helps them feel less alone in their situation, then the leap is entirely worth it. I am no doctor, I do not have any degrees regarding the subject, and I am nowhere near a writer of any sort, but what I am is someone who wants
to help make a difference in the world, especially the world of HD.

I can assure you that there will be endless typos, run on sentences, and commas will be missing, but that is not what I am here. I am here to inspire those who read this and lift them up when they need it.  There is a chance that no one will read this, and that is okay too. I am sure that this will serve as much as a therapeutic tool for me as it could for others.

This is a judgment free space and I am hoping to maintain a judgment free zone as long as this page is up. One of my main goals, as previously mentioned, is to provide a space that is full of love and support that I feel the HD community is missing. The angels on earth
known as social workers can only do so much.

I made a deal with myself in 2016 that I was going to work on communicating more effectively with all of those around me. I have never been one to talk about my feelings or struggles with anyone, which more than likely stems from growing up in a home where no one openly discussed or even acknowledged feelings. Even so, I began having this urge to get my story out. I wanted to share my hopes, dreams, and fears. I wanted to share it so others know that they are not alone, and writing has always been the easiest outlet for me.

My ultimate goal is to help someone find his or her inner badass warrior I know that no matter what you are going through that badass warrior IS in there somewhere just
waiting to be unleashed!!!  Please know, that no matter how deep you are in, there is always a way out.   We need to band together and offer kindness and acceptance to every single person we meet!