2017: Year in Review

A lot has happened in the past year. It’s been crazy, but I was able to do a lot of the things I wanted to do. I was able to spread awareness about FSHD with my documentary, fundraising, a film festival and so on. Here is what has happened this year…

My Documentary: I completed and posted my Documentary on YouTube and now it has almost 25,000 views! Pretty insane and I honestly did not expect it to get so many views. It was shared a few hundred times on Facebook, which definitely helped to get it noticed.

screen-shot-2018-01-05-at-3-29-05-pm.png

Fox 25 News: I was interviewed for a short segment on the local Boston news. I talked about how I am trying to spread awareness about FSHD through my documentary. It was crazy to see myself on TV; but I think it helped a good chunk of people, learn more about this rare disease. Link here: http://www.fox25boston.com/news/local-family-hopes-rare-disease-awareness-will-bring-them-a-cure-1/601175523

Screen Shot 2018-01-05 at 3.27.44 PM.png

Charity Bartending: In July, I decided to do this “charity bartending” event at the bar, McGreevys, in Boston. I invited some family and friends and raised about $400. It was so much fun! Basically, I got to be the bartender for the night and my family and friends ordered drinks from me at the bar. All of the tips and 10% of total sales went to the FSH Society.

19961547_10213331095134647_4350774641504457679_n.jpg

Film Festival: I submitted my documentary in a few film festivals just for the heck of it! I know my documentary isn’t of the highest production value, but I thought it would be amazing to attend a film festival and see my film on the big screen. I was actually accepted into the Atlantic City Cinefest! My boyfriend and I made our way down to NJ and saw my film at the screening, along with some other awesome films throughout the weekend. People asked some great questions about it while I was there, and it was great to chat with them about the disability and the filming process.

FSH Society Radio Show: Was a featured guest on the FSH Society Radio show hosted by Tim. Got to share my story and hear other peoples stories about how they live with FSHD. First time I’ve ever been on a radio show…it was weird to hear my voice when I listened afterwords, but it was so fun! Heres the link: http://www.blogtalkradio.com/fshsociety/2017/12/28/fsh-society-radio-live-show-8

Fulcrum: Was invited along with other FSHers to Fulcrum Therapeutics, a biotech company in Cambridge researching treatments for FSHD. We talked about how FSHD affects our lives, so they could learn a bit more about the people living with it.

e59140a4-8723-41ce-b299-aca5697eba00-original.jpeg

MD Article: Was featured in an article by Muscular Dystrophy News with my mom. We talked about our relationship and how everyday life is affected by FSHD. It was super cool to see my name on there! Link here: https://musculardystrophynews.com/2017/03/23/fshd-interview-diane-lexi-pappas-of-massachusetts-on-living-with-fshd/

I probably missed some stuff, but it’s been a great year and I can’t wait to see where 2018 brings me!!

 

Advertisements

& just like that…

Ugh the frustration that I know every person with FSHD feels. When you’re doing something, like hanging up Christmas lights for example, and you go to reach your arm up to hang one strand and you just can’t reach. So you try again and extend your arm as much as you can but you just can’t get there and then BOOM all of the sudden you’ve slipped and fell off the chair and onto the ground. & just like that I’m sitting on the ground fuming about the fact that this just happened.

It happens almost every day. You’re reaching for something, leaning over, or even just trying to step over the rug. It’s so easy just to fall and hurt yourself. It’s just something that happens that honestly, you can’t really do anything about. You can try to be more careful, but then you forget that you’re supposed to be careful, and you’re on the ground again.

I hate this feeling. You just feel so useless. You can’t even do the simplest tasks without your FSHD f’ing it up. These are the times I really just wish I could get rid of this disease. I’ve had multiple dreams where I don’t have FSHD anymore and it’s just such an amazing feeling, and such a tease. I know that things could be worse, but it just sucks that every single day, all day, I can feel the affects of FSHD.

I may put up a front that I won’t let FSHD stop me, or that it doesn’t get to me…but it does. & thats okay. Were allowed to feel upset about something like this; we can’t just pretend its not affecting our everyday lives. If you have FSHD, just know that most days it’s going to suck, but there are so many other people facing the same obstacles as you. Sharing the low points in life will help other people to understand your struggles. Don’t let it get to you, but always feel free to vent. Thats all I have to say for now 😉

Stuck in the Middle

I am so sick of being told I am too disabled to be normal and not disabled enough to be handicapped. When I say “being told”, nobody is directly telling me this but there are so many things I find myself getting frustrated about because I am somewhere in the middle.

So my boyfriend and I are moving to the city in September. We are trying to prepare as best we can for the parking situation. When we were on the apartment hunt, our realtor told us that there is a way to get a handicap spot placed near your house. I looked it up and found the application for getting a spot. I read through it and noticed it asked things like “can you walk more than 200 feet, do you have a mobility device, etc.” Things that don’t necessarily apply to me. I wondered if I could really get accepted for this or if it was a waste of my time.

There was a section that was to be filled out by my physician or a licensed specialist. I went to my physician’s office because she is close to my house, even though she has only known me a little while and basically has no idea how FSHD affects me. I wanted to go in so that I could fill it out with her. One of the first things she said to me was, “I’m honestly surprised you were able to get a handicap placard, I got a hip replacement and I have a lot of pain but I couldn’t get one.” I wish, like really wish, that the only thing in life I had to worry about was getting a hip replacement at the age of 50. She felt as though nothing was wrong with me and that my application probably wouldn’t get accepted.

Anyways, it just made me think about how I’m always stuck in the middle. So on one hand I’m not disabled enough to get this handicap parking spot on the road. I think about how hard it is going to be for me to park, even just a block away from the apartment everyday. I often have to carry many things with me, like a big bag for work, my computer, etc. About 5 seconds after I get out of my car with all of this stuff I am already in pain. So now I have to walk a far distance to get into my apartment and I’m tired, I’m in pain, I’m not having fun. By the time I’ll get to my apartment, I’ll just want to lie down and never get up. So I’m not disabled enough to get this handicap spot, yet I’m too disabled to have a normal walk up to my apartment. I just feel so stuck.

You might be thinking, “well why did you move to the city where things aren’t accessible? or why did you choose an apartment with no parking?” I have two answers, dreams and money. I have dreamt of living in an apartment in Boston for a while now. I firmly believe that you shouldn’t let your disability stop you from doing what you love. I’ll say it over and over, I am not going to let my disability stop me from accomplishing my dreams. The second answer is money. We looked at countless places. Half the places were pretty beat up, yet they had parking and half the places were nice but had no parking. I would rather live in a nice place that I feel safe in then live in a gross apartment in a bad area with a view of a gas station.

When people think of handicapped people, they often think of people in wheelchairs. That opinion is changing but it’s still the vast majority of people’s opinion. You look at me and right off the bat you think I’m fine. Yet, you don’t know what I go through everyday. I’m not one to complain to others about my life (except through this blog ;)) but it’s just that it’s really been getting to me lately. I just hate feeling stuck and I don’t know what to do about it; because in reality, there is nothing I can do about it. I just have to be thankful that I am still able to walk, and live in this beautiful apartment in my favorite city.

Growing Up With FSHD – a Short Documentary

Living with FSHD has good times and bad times. It can be difficult to express what it is like during those times, but over the past few years I have been working on a short documentary that finally tells my story. Not only does it just tell my story, it also tells my mom’s, uncle’s and grandfather’s (who passed away a year ago).

Facing this disability alone is next to impossible; but thankfully for me, I don’t have to do that. Even if you are “alone”, you really aren’t! There are so many groups online where people can communicate about their disabilities. Telling others about your disability can really change your life. Getting positive feedback and encouraging words is what keeps me going everyday. You are never alone, you just have to put yourself out there!

Here is the link to my documentary: https://www.youtube.com/watch?v=VSTgoxlMvUw

I hope you can appreciate our story and that it teaches you something new. All I want is to make a difference and inspire others to do the same. Don’t live life wondering what you could do; go out and do it!!

Random Thoughts…

“Facioscapulohumeral muscular dystrophy (FSHD) is a genetic muscle disorder in which the muscles of the face, shoulder blades and upper arms are among the most affected.” -MDA.org

When I was 13, I found out I had FSHD. To be honest, I don’t remember much about how I reacted when I found out. I had just found out that I didn’t make the field hockey team in 7th grade. I was upset, especially since I realized that I wasn’t running as fast as I used to. My mom told me, in some form or shape, that I had FSHD. She has it too, as well as her brother and father.

The main problem with FSHD is the deterioration of muscle. This causes many visible symptoms, like the inability to run, difficulty with walking up stairs or walking in general, pain in many joints and muscles, the inability to whistle, sip through a straw normally, bend over at the waist. I am unable to hop, skip, bike, lift my arms all the way, I mean the list just goes on.

It’s almost as if I knew it was coming and I just accepted it. I think I didn’t overreact because I could still do almost everything that I used to be able to do. As each year went on, my disability slowly got worse. My muscles were deteriorating and I was hiding it from all of my friends. I was trying not to let this disease affect my everyday life, and it didn’t really, until later in high school.

I’m glad I was able to hide it up until college, because high school and earlier are the prime times for bullying. I’m 23 and out of college and I’ve had people make fun of me very recently. I think if this happened in high school though, I wouldn’t be taking it so well. I find it crazy that people are making fun of me at my age. This has happened to me twice and I know that doesn’t seem like a lot, but I never thought it would happen at all; so it was all very surprising to me.

Before you go and make fun of someone for the way they walk or the shape of their body or the way they talk; think about the challenges they have faced because of it. After working hard to combat your disease, would you want people to make fun of you? It tears down your confidence and it is not ok. Think about that the next time you see a situation like this.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

How does this affect me?

Just a few months ago, when everyone was posting on Facebook saying millennials, people of color, the LBGT community, etc. are all in danger if Trump gets elected…I didn’t really believe it. At the time I thought, well what is Trump really going to do? I mean the senate isn’t going to let him pass all of these laws that could endanger people. Today I was in shock when I already saw The House passing an anti-abortion bill. It’s only been a few days since Trump officially became the President of The United States and he is already letting millions of people down. I thought at first this law wouldn’t affect me….but then I thought about it.

By having FSHD there is a 50% chance that my child will also inherit the symptoms of FSHD. You can lessen the percentage though by doing gene therapy, where they take out the gene causing FSHD, DUX-4. But gene therapy is not 100% reliable. After they complete the gene therapy process, I would have to go back to the doctors to see if the process actually worked. If it didn’t work and my unborn child (really a fetus) has the FSHD gene, then I will have to choose whether or not I want to abort the pregnancy.

This is a huge decision for me. Not that I necessarily have to worry about it right now, but I do have to think about it. I know that I do not want my baby living with FSHD. This kind of gene therapy technology was not around when my mother had me, but now that it’s here, I am going to use it. I want to put an END to FSHD in my family. I do not want my child growing up worrying about how different they look, getting made fun of by other people, in pain 24/7, the list goes on. I want their life to be different and I am going to make sure that happens.

How did we let Trump become president? Are there really that many people out there that believed he would be a great fit for our country. Everyone wanted change and that’s exactly what you got. Not good change, but bad. I can’t begin to wonder how many other awful laws are going to be passed. Stay tuned.

SheLift

“I literally can’t even.” – something I’ve heard come out of the mouths of my friends, strangers and girls online. Some people have even used this sentence to stereotype sorority girls. I am one of those sorority girls, and although I have never used that specific sentence before, I have said something similar.

“I can’t” is something I say very often. When my friends are running across the street to avoid the rain and they say, let’s run….I say, “I can’t.” When someone asks me to go hiking on Mt. Washington I say, “I can’t.” Those two words are ones that 10 years ago, I would never use. I used to be able to do anything. I could run miles, hike up steep hills, rock climb, do backflips. I was strong and able to do pretty much anything I set my mind to. Now, I feel limited. Because of my FSH Muscular Dystrophy, I am unable to do most normal things, like run, jump, skip, hike, bend over, bend backwards…the list goes on.

When I first saw Sarah Herron wearing a shirt that said “Maybe you literally can even”, I honestly thought she was making fun of those sorority girls who say “I literally can’t.” I went on for months seeing these bachelor celebs wearing these shirts, but I never really looked into the meaning. Finally, about two weeks ago, I did some research. I was pleasantly surprised when I found out that their mission is to empower women of all ages with disabilities. This is an organization that I knew I couldn’t let pass by. I read all parts of their website and then I bought a shirt.

img_6690

It’s so exciting to see a nonprofit company supporting women with disabilities! Not just one disability, but all disabilities. I always think of all the things I wish I could do, like ski again, or hike through the Appalachians, or rock climb, and now an organization is helping young women like me, do these things. To me, having a disability does not mean that you are unable to do things, it just means that you have to work harder than your peers to do the things you want most in life. I used to let my disability define who I was, but now I use it to empower others. I want others to see that you can follow your dreams even though you may be limited physically. Raising awareness about FSHD and disabilities in general is my goal in life. Inspiring others is my passion.