Week Update

        Hey everyone!  I hope you've all had a good week so far!  Today's post is just going to be a simple recap of the week.  

        This week has been pretty busy because I've been preparing for a big trip!  Can't say took much about it right now but I am very excited!  Sometimes it's nice to just get away for a few days to have some fun and this is definitely one of those trips.  Lots of saving, preparation, and convincing of my parents went into this trip so it's a pretty big deal!  Can't wait to tell you more about it later!

        In other news, I watched Interstellar all the way through for the first time this week... if anyone has seen it, please comment your thoughts because I have a to say and we can discuss.  First of all, I loved it, it was a very interesting and well done movie, but no one prepared me for how sad it was!  There were some plot holes and a few unanswered questions but what science fiction movie doesn't have a few of those?  Overall it was really good.

        Ok that's it for me this week.  Next week there won't be a post but don't worry it's for good reason!  Till next time!  Bye!

Disability Pride Month

         For those who don't know, July is Disability Pride Month.  It's a time to celebrate the way others like myself were created.  You read right, I said celebrate.  I have an interesting relationship with that concept and I wanted to talk about that in this weeks post.  It's coming out a day late because I wanted the time to really get my thoughts together, that's also why it's coming out at the end of July and not the beginning.

        For starters, everyone who knows me or has read my posts the last few weeks know that I grew up with a very lucky childhood.  Parents and family who love and support me, awesome friends, but one thing that makes it kind of unique.  For context let me explain something I've observed over the years.  You see, on average the disabled community and able bodied community don't really mix.  Media is probably the best example of this.  I challenge you all to think of any piece of entertainment or media that involves a disabled person... hard to come up with stuff right?  Of course there's the based on a true story movies, those are awesome, but there needs to be more.  I talk about this because I feel like people in the disabled community were almost forced to stay with each other and not branch out because media has in a way told us we don't want to associate with you.  

        Now I'm not trying to get on a soap box because that isn't me, I'm explaining this because in order to capture my experience as a disabled person as authentically as possible, that observation needs to come to light.  Now you see, this whole segregation didn't really bother me because I never really grew up around people like me.  I can count on one hand how many disabled friends I have, and I see them about once a year at most.  The friends I grew up with and that I still have to this day are all able bodied people (makes it fun to run over their toes ;)).  Most of the time I'm grateful that I wasn't treated any differently, it made me forget that I am different, but as I get older I find myself battling the two parts of myself.

        Because I never grew up surrounded by other wheelchair users or other disabled people, and was told that I'm no different than everyone else, I wrestle with moments where I want to stand out, show off my chair, show how I'm unique.  On top of that, never seeing a girl who looked like me in the media, made me feel like one of the things that makes me, me, shouldn't be celebrated, and the older I get, the more I want to.

        Being disabled can be freaking rad and should be embraced.  Over the last year or two I've been on that journey to own that part of myself and even shed a light on it.  That's one of the reasons I have this blog, to talk about this part of my life. To show who Rylie is, disability and all.

        Having said all that, I don't regret anything.  I love how I grew up and I wouldn't change it for the world.  Everything happens the way it's supposed to.

        Alright that was probably the longest post yet.  I hope it was an interesting read and next weeks post will be much lighter, bye!

 Update

        Hey everyone!  Today is just going to be a short little update/week recap.  Nothing too exciting happened this week.  I mean one of my favorite shows The Summer I Turned Pretty came back from hiatus so that's exciting to me lol.  Other than that it's been the same old, same old.  I finally got the hotel booked for a girls trip coming up that I'm very excited about! (Stay tuned for more on that later).  

        Not so proud moment but I forgot my dads birthday yesterday... oops... don't worry he has been texted so everything is good lol.  Also yesterday my new mouse arrived in the mail so I'm very excited about that!  My old one only worked plugged in which made it very difficult to type and hold it for a long period of time.  So typing this has been a breeze with the new toy! 

        That's it for this week.  Sorry for the short post, next will be bigger and better so get excited about that!  Bye!

 And it begins...

        Hey everyone!  I hope you all had a good week,  Last week I said I would have exciting things to talk about this week so here it is...  I'm getting a new chair!!!!  I'm so excited!  To say that I am due for a new one is an understatement to say the least.  Today I kind of just wanted to talk a little bit about the process of getting a new motorized wheelchair and what's been done so far.  

        Contrary to popular belief, getting a new motorized wheelchair is not as simple as "Here are the options, pick your favorite and it's yours!" especially in my case.  You see, I have pretty bad scoliosis (curving of the spine) so that means my seat has to be custom made to fit me so it's as comfortable as possible.  I also need to make sure I have all the adaptive technology I might need in order to make it easier to drive said motorized wheelchair.  All that requires different professionals, appointments, fighting with insurance companies (they only like to pay for what they think is necessary, which is the bare minimum) which makes the entire process last for almost half a year at least.

        Friday I had my first consultation with a physical therapist and wheelchair guy from Salt Lake City.  We talked about why I need something new, what isn't working with this chair, and what things I would like to have on the new chair.  You should have seen there faces when they found out I've had my chair for almost 9 years.  The faces of nervous laughter and horror was because you're supposed to get a new chair way sooner than that.  As you read above, that process can be a little bit of a headache though so we try to push it off for as long as we can.  The funny thing is after it's done, we ask ourselves why we didn't do it sooner.

        That's it for this week.  I thought about doing a question and answer post soon so if you have any random questions you would like me to answer, leave them in the comments.  Bye for now!

California

        Hey everyone...  Guess who's back from Cali!  I know I said I was going to get a post out on Friday but we drove home the day before and I was still pooped from it.  I could have probably made a little short and sweet post just to say I did it, but I wanted this one to be good.  Today I want to talk about what taking a trip to California looks like with my health, a real honest look at what it was like, the ups and downs.

        Let's talk about the drive, all 12 hours of it.  I've taken the long drive before but I was seven at the time and we were going to Disneyland.  Maybe my brain tried to block it out, because I didn't recall it being that long or rough on my body.  At this point in my life I can sit in my chair for about six hours before it becomes unbearable, before the hip pain becomes the only thing I can think about while my lungs decide to take a vacation and not work as hard.  It was one of those things where it felt like you were getting close to being done but in reality there are still hours to go.  What it comes right down to is I need a new chair, plain and simple.  The one I'm in doesn't fit anymore and almost makes my own body betray me.  What got me through was California was waiting for me, getting there would be worth it.

        That said, drive home was worse, there was nothing waiting for me besides my comfy bed that I so desperately needed by hour seven.  Music was doing a pretty good job at distracting me, at least until hour ten, that was when I hit my wall.  The hip pain rendered me to tears and all I could do was hang on two more hours.  If I'm being honest with you guys, I didn't think I could do it, I wanted to pull over at a motel and just pick it up in the morning, I would have settled for the side of the road if it meant I could get out of the chair that decided to be evil at the time.  Thank goodness for my mom and sister for helping me through it by cheering me on and distracting me.  Just when I thought I couldn't do it, my mom played the song Don't Give Up On Me by Andy Grammar, that gave me the motivation I needed.

        Being there in California was worth everything though.  Being in the nice weather with family is the best no matter what.  I had the opportunity to get to know my step brothers a little bit better and that was definitely a highlight.  They were so good about including me in things and helping me experience new things like GETING IN THE WATER!!!  I wasn't going to do it, I was too scared I would get dropped or hurt in the process but when my step brother Anten offered to take me out there with the assistance of my step dad, something gave me the confidence to agree to that idea.  Boy am I happy I did it, just the bragging rights alone to say that I got in the ocean is awesome.

        I think that's it for this week.  Next week I got some exciting things to talk about so stay turned ;).  Hope everyone has a good rest of the day, I'm signing off!

Traveling

        Hey everyone!  Today' post is going to be a little short because we've been preparing to go to California!!!  That brings us into today's topic, traveling, packing, and all the joy that comes with it (in case it wasn't obvious, that was sarcastic). 

        I don't go father than Salt Lake City almost never but when I do, it takes about a month to prepare.  Last week I talked about all the equipment I use on a daily basis and that doesn't change when I'm sleeping in a different bed.  The first step is my mom orders extras of almost everything I might need in case something breaks down or there's no chance I run out of anything.

    Next step is a list.  My mom makes a list of every machine, device or medicine I need to take so she can cross it off as we pack.  My mom is probably the most organized person I know.  I tease her about it a lot but ultimately I'm grateful for it because if it wasn't for her organization skills heaven knows we would undoubtedly forget something and being 12 hours away from home makes forgetting a piece of my supplies a very bad thing.  

    I have so much stuff that our van is usually filled to the brim.  It's not the most ideal situation when need something and my mom or sister have to sneak to back of the van to help.  A bowl in a china shop is not a figure of speech for us.

        I made all of this sound like a pain in the butt, which it is, but it's worth it to experience new things.  You only have one life to live, have to experience it to the fullest.

        That's it for me this week!  Expect next weeks post to be a day late because I'll be in Cali!  Bye till next week!

 Growing Up

        Hey it's me again!  Today I want to talk about what growing up was like with my special circumstances.  Some of the ups and downs that come with it, and also how it was similar to everyone's childhood.

        My early life wasn't as glamorous as others.  Instead of learning to hold my head up or crawling around trying to get my hands into everything my parents didn't want me to like any other baby, my first few years of life was spent in and out the hospital every few weeks, battling pneumonia constantly like it was a new trend I was trying to start.  It was almost like little me wanted to keep my family on their toes.  

         Eventually I survived long enough to make it to the age where I was old enough to finally use the medical equipment I needed to make me more stable in my daily life.  Since then my every day routine consisted of breathing treatments multiple times a day, list of medications as long as my arm, even needing assistance with a machine every time I needed to cough.  Sounds hard and annoying to do every day, which it can be, I won't lie, but it's all I know and it keeps me healthy as much as I can be so the pros outweigh the cons.

        School growing up was fun, it was one of the few places I could run around without my parents.  I just got to be a kid in a regular class with friends and the few childhood crushes (we all had that one boy in elementary school we would chase around, no one lie).   High school wasn't as picture perfect though.  My health got a little worse and I seemed to hit a patch of depression.  Starting in 5th grade I started doing school from home during the winter, then went back by spring.  In high school I lost the motivation to go back after winter passed.  My head was telling me all my friends moved on, found other people to hang out with.  When senior year hit I didn't want to spend my last year of high school being sad in my room so I made it a point to go to every activity I could until I dropped.  My friends and school aid Darcy were actually a huge help in that, they took me under their wing and introduced me to other friends who I never got a chance to meet while I was at home.  It was the best year of my life (besides when Covid hit but we're not going to talk about that right now).  

        All this might be hard to do alone but I had parents and siblings to be with me through it, one brother in fact who went through the physical limitations I did.  Aunts, uncles, and grandparents deserve honorable mentions as well.

        Growing up I was never allowed to feel sad about my situation because I am surrounded by support from friends and family and I didn't want to live life depressed and bitter.

        That's it for me here this week.  Don't forget to follow and leave a comment down below.  Till next week!