#rare diseases

You Are The Universe Experiencing Itself

January 30, 2018

Do not become / A “new you”. / This year, / Become / A better You.

Hello there, loyal readers. This update is going to have quite a quantity of information shared with you all, so be prepared not to be able to read all of this in one sitting. I’ll have headings as I usually do so that if there is something anyone wants to skip over, it’s easier to do so.

Hair and Color

More than two months ago, I decided that I needed a change. I’d had my red hair for so long, then ended up growing it out for various reasons, and I feel like having dyed hair makes it easier for strangers to come up to me and start a conversation. So, I booked an appointment with my hairdresser. Well, not my usual hairdresser, as he moved to another salon, but this one was friends with my trusted hairdresser. Plus, she did my dad’s hair, so I figured why not?

I wrote this a while back to post as another entry, but ended up not publishing it because, well, we’ll get to that later.

November 12, 2018

Got my hair cut and colored today. I have been deliberating on getting my hair cut lately as my hairdresser moved salons, and It’s about a half hour away… My hair has been kind of a touchy subject lately. But my dad convinced me that I was beginning to look a little too shaggy, or as he so eloquently put It, “homeless”. So, I booked an appointment with Annie, who cuts his hair and my grandmother’s, but today was our first time doing my hair. She’s a really cool individual plus she’s friends with my hairdresser so I figured I’d give her a try.

I’m really glad I did! She did an absolutely amazing job! My head fell only about three times and getting it colored was painless. Between her being careful but confident, and my Spinraza strengthened muscles, and Dad when he was needed, the three of us made a good team.

Originally, I was just going to do blue highlights. I’ve missed having my hair as a talking point for strangers, and I didn’t want to do red again, so I figured why not do something totally seemingly out of character?! I’ve thought about doing crazy colors before, but I have the confidence of a… Okay, everything has more confidence than I do when it comes to my appearance or personality. Anyway, I’ve been slowly trying to get back to my old cheerful self that did what she wanted to do because It made her happy, not because she wanted to Impress someone other than herself.

So that’s what I did.

When Annie showed me the shade of blue that I was thinking of doing, it was on a ring of other colors as well. In noticing this, an Idea was forming in my head, with the conversation that I had with my grandmother playing in the background.

“May I see the purple?” I asked with curiosity.

Who said I only had to have one color highlighted into my hair?

That’s how I ended up with glorious highlights of blue and purple.

It wasn’t until about two months later that I got to refresh my glorious cosmic hair, as my hairdresser had gotten sick the day I was originally going to redo it, and then I got sick on the day I rebooked with her. Which leads me into my next heading.

A Spin On Colds

Yes, that’s right, ladies and gentlemen, I got sick recently. Directly after Christmas, in fact. It was rather an interesting holiday this year as my grandfather came down with something right before my aunt flew in from New Jersey. So instead of spending Christmas with my grandparents like we have every year prior, my aunt and I slept over at my dad’s, so I wasn’t near germs. I have, I’m sorry, I had managed to stay healthy and not get sick for almost two years this coming February. However, after three late nights, and exhibiting much more energy than I have for quite a few years, my body ended up giving in to the sick life. This time, though, something was different. This time, I didn’t go downhill like I always do. This time, I got a regular old head cold.

Yeah, I couldn’t believe it either. That first morning when my sore throat began to break, I coughed, and I sounded like I was drowning. Just like every sickness I’ve had to endure since I first started this seemingly endless battle with my own body back in 2015. My dad sounded more irritated than I can describe when he heard this cough first thing that morning, but nonetheless turned me on my side like I do every morning to get my glug out and set up my nebulizer to give me a treatment. Granted, I believe it may have been an hour that it took to get this stuff out, but the thing is, I got it out. And it stayed out. It would come back a bit every so often and if I didn’t keep up with my decongestants along with my nebulizer treatments, I’d end up getting really stuffy and would feel an allergy tickle in my sore throat, but it never went beyond this. One of the days, though, my throat hurt so much that I had to use my phone to communicate by having it read off the words I was typing. Luckily, that only lasted for one day. The day after that, it still didn’t feel great and I had to periodically have my phone talk for me, but this was all normal. No drowning in my own lungs, no wishing it would all just end, no epic depression after realizing I was sick again. Just felt… Sick.

Now, this is something absolutely huge in my life because I now know that if I do get sick, this is all that will happen. I now don’t have to live in constant paranoia that if I get sick, I might die. Why have I come to this conclusion? How could I possibly know that this wasn’t just a fluke and that this wasn’t just a coincidence? Well, first off, I don’t believe in coincidences. Secondly, I would have to have absolutely no knowledge of my own body to think that this situation will not replicate itself. Every single time I got sick before, it didn’t matter if it was from pain, stress, fatigue, whatever, I would end up going downhill and not being able to breathe without extreme fear of drowning without my Bipap. This time, I spent one full day with my breathing helper and I was actually able to eat. Which was absolutely amazing since my appetite has been rather small since my fifth Spinraza injection, resulting in me eating less and less which most likely did not help my body fight off this cold in the first place. Since I got over my sickness about a week and a half after coming down with it, my appetite has luckily increased. Dinner isn’t fun trying to get down still, but the rest of the day I am actually eating.

I cannot vocalize enough how grateful I am for being able to say that Spinraza has absolutely turned my life on its axis. If it weren’t for this incredible medication, I do not believe that my cold would have simply stayed as a cold the way it is supposed to.

A week ago, I did finally end up getting my hair redone and I am absolutely in love with it again as I actually went back to my pixie cut.

Cue cheesy smile

Written in the Stars

Even though Christmas was not at all what we had anticipated, there were a few good things that came out of it. I managed to send my friend in New Jersey a home made present created by yours truly, which in turn showed me that I can actually sew with a needle and thread now. I got photos with Santa and his wife who travel around my grandparent’s neighborhood with the fire department and a fireman came up to me with a hat saying I could come work for them any time I wished. I was buzzing by the end of that night even when I knew we couldn’t have our normal Christmas Eve dinner together. My family discovered that our long-time friends and neighbors were our secret Santa that did the 12 Days of Christmas with a gift waiting outside our front door every day from the fourteenth of December to the twenty-fifth. But what really made an impact on me this Christmas was what was in my stocking. A book. But not just any book, no, this book was a book of poetry. Light Filters In written by Caroline Kaufman was in my stocking and when I read the poem written on page eleven, I felt as though I was reading my own thoughts. For the first time, what I had been trying to explain to others, but mostly myself, was written down in this two-hundred poem book created by a female the same age as I am.

Poetry has been a fairly large interest of mine since I had to write my poem for class which I added to my video for the SMA Video Contest. Especially once my dad introduced me to The Doors when he made me watch the movie with Val Kilmer starring as Jim Morrison. That man made me want to write more poetry, then I read Ms. Kaufman’s poetry and I decide that I will follow in her footsteps, but with my own spin of my tires. So far, I have twenty-three poems written and I am not stopping there. Especially when all of this made me realize that I have been writing poetry for most of my life without even being conscious of it. I’ve always loved trying to write songs, but I could never figure out a chorus. I thought poetry had to rhyme, but I realized that this is a fallacy. Which has opened a portal that I never knew existed.

Which kind of brings me to my next topic, which is going to be under this heading because this is all pretty connected.

As I mentioned earlier, I entered a contest that was to explain what it is like living with SMA for me. I placed fourth, but I had and have absolutely no idea how to promote my creations. However, the first, second, and third place winners did. The reason why I am bringing this up is due to an email I received a few weeks back. Writing this down is not easy, even though I never knew him personally, he was and is a part of the SMA family and participated in the same contest I decided to partake in. Ryan Cotter, the third-place winner, passed away at the beginning of December due to complications caused by the disease we both endure. He was 17 years old and excited to attend college after he graduated this year and was accepted to Arizona State University’s Digital Culture degree program as he was fascinated by the creation of videos and luckily, he had the utilities to allow him to experiment and fulfill his want to create with technology.

Now, I have had this information in my possession for a few weeks now and I honestly have no idea where to pocket it. Hence this update being much later than I had intended. I am about to confess something that may or may not end up bringing hate mail in my comments or inbox, but I feel like this information needs to be out there. Ryan ended up impacting me in a way that I never imagined I could be impacted.

I never liked being around, associated with, or promoting the fact that I am apart of a disabled community. I never wanted to do the video contest as it ended up making me relive my darkest moments. I never made it all the way through each video that was also entered into the contest because I could not bare to see others like me. I never like the fact that I am disabled and never want anyone to acknowledge that I am unless it involves my limitations as I’ll end up beating myself up over something I cannot do if it is brought to my attention.

All of these things kept me from watching Ryan Cottor’s video before he passed. All of these things kept me from discovering that he and I had a lot in common and that we could have developed a friendship. All because I was selfish and did what I get angry at everyone else for doing. Judging someone before I get to know them. Due to this, I have been a big ball of guilty energy. I know that I cannot change the past, I know it’s a bit too late to ask for forgiveness, but I would give every injection I have had of Spinraza to him if it meant he could have lived the life he should have lived. However, this is only something that can happen in my imagination, so what I will do to try and set things right is to allow myself to become a better version of myself. Isn’t that what everyone else does this time of year? Make new years resolutions? Well this is mine.

I promise to become a better version of myself that has theories to suit facts instead of facts to suit theories. To know absolutely everything I can about a situation before believing I already do. To be an advocate for the disabled community that will not sugarcoat the truth to make it easier to swallow.

I may appear cynical at times, but the reality behind having such a debilitating disease is not a kind one. However, there are those like Ryan who would never allow that to be his reality, which allowed him to live life the way he wanted to. Not all of us are that fearless, but we can strive to be. The way I will strive to be fearless is to put together a book of poetry written by yours truly. Becoming an even better writer is what I will work on this year. I have taken my six months off, now it’s time to work. I don’t know if I will go to college, I don’t know if I will suddenly be able to walk with Spinraza leading the way like Venom does for Eddie when he heals him after his motorcycle accident, I don’t know if a celestial anomaly will hit the earth while I sleep and wipe out humanity’s only home, I don’t know if I will ever pluck up the courage to tell someone I love them, I don’t know if the next time I get sick that I will be able to get well again. None of us have any guarantees in this world, so we have to live it without fear and with an understanding that our lives are our own, to not let anyone else take anything away from it and only add to it.

I will be trying to add to this blog at least every week from now on. That way it will be easier to keep track of new advances in my strength and so forth.

I warned you this would be a long one. Thank you for reading until the end. If anyone has any questions, or just wants to chat, I will have all my contact information in my bio of my blog.

As this entry began with a poem, it will also end with one.

Living with SMA Video Contest - My Not So Normal Normality

December 1, 2018

“My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” -Stephen Hawking

Greetings from the girl sitting at her computer writing to you all. I have some important information to share with all of you. So sit back, and please read this all the way through. I understand that all of you have busy lives, however, this is extremely important to me.

A week or so ago, I sent out a post promoting a video I have created for a contest. This contest’s main purpose is to bring about more awareness to my disease, Spinal Muscular Atrophy. The winner of this contest will be decided by how many likes each contestant has on their video. I am competing against five other people who also have SMA. Now, my video has 72 wonderful likes, thank you so very much to those who took the time to click the like button on my video and not just my post, but 3 of the other contestants have likes in the hundreds. I noticed that my video, compared to the rest of them, is extremely different. My competitors simply did a video of themselves speaking, while mine is a narration with music accompaniment. Speaking for 3 minutes straight is not an easy feat, therefore I attempted to make my submission a bit more creative and entertaining on this topic that hits so close to home.

So, please, click or tap on the link below to my video on YouTube and click the like button, if you haven’t already. Every “like” and every “share” is so important to get this video out to more and more people. Let’s make this video go viral and show the world that, yes, living with an impairment is difficult. But it makes us who we are, and it’s nothing to be ashamed of.  Always Keep Fighting. Be Well Be Strong.

Thank you all in advance.

https://youtu.be/ZPBRmn0sIbU

Cure SMA Video Contest

November 24, 2018

Hello there my wonderful followers! I have some interesting news to share with all of you.

Cure SMA is holding a video contest where either the caregiver or person with SMA was to create a 3 minute video describing what it’s like living with SMA. My grandmother has been pushing me to do this contest, so here it is! Finally finished!!! Click this link https://youtu.be/ZPBRmn0sIbU to view it.

I apologize that there isn’t more information in the video, but one can only fit so much in a 3 minute video… The information shared in this video is my every day reality. I do appreciate each and every one of you that reads my blog and interacts with me on social media, however this video is my truth at this specific moment in time. Maybe that will change due to this video, and I hope it does. There have been quite a few people that have been my friend at one moment or other, and I am eternally grateful for everyone who has been in my life, even if they didn’t stay very long.

I just want everyone to know that I did not make this video to belittle anyone or so that people would pity me. This is what happened during my years at school, I wish it hadn’t happened that way, but it did. There were good memories, but the brain tends to remember bad memories in high definition compared to good memories.

Doing this project was one of the most difficult tasks I have ever had to complete. Reliving my years at school instead of trying to suppress them was not my idea of a good time. Even writing this entry to my blog is giving me the same emotions that I experienced whilst doing this project.

Anyway, to totally shift from my self pity party, I’m not usually one to beg for views and stuff like that, but please! Comment! Like! Share! The video that is the most popular is the video that wins the contest. Even if a bit of the video is sad, the rest of it, I think, exhibits well-being and amenity.

It would mean the world to me if you passed on my video to teach others that, yes being disabled is difficult, but it isn’t the worst thing to ever happen to someone.

Thank you in advance!!

Dose #5: Haunting Surprises

November 1, 2018

Not all treasure is silver and gold.

Why hello there my loyal readers! I know, I know, it’s been over a month since I last published anything to this blog even though I said I’d be writing more. I’m still trying to figure out how to do this whole blog thing… However, I do have quite a bit of news to share, so once I remember how I usually do these kind of entries, I’ll get right to it.

First Maintenance Dose of Spinraza

Today is a week and three days after I was administered my very first maintenance dose of Spinraza, my fifth injection. Sorry for such a long wait, just like last time. For some reason, whether or not it’s due to pain, I take an entire week to recuperate from my injections. Even right now as I’m writing this, my brain is screaming at me to stop writing and do something mindless.

Sorry brain, you don’t run this show.

Well, maybe you do, but you’re not making me stop writing.

I think I’ve lost my mind.

The procedure itself went extraordinarily well. Compared to my fourth injection, there was a noticeable difference in how my team was acting. My radiologist seems to be a bit more comfortable with me, I’ve never seen his face but hearing his voice behind me warning me he’s going to do something as I freak out if he just does it has become sort of comforting. Although, it sort of causes more anxiety since I now associate his voice with pain as he’s the one who starts off the whole thing with cleaning my skin for preparation of the lidocaine shot to make my skin numb for the injection…

Of course, I was flipping out the entire time during this dose. Flashbacks of the last one invaded my thoughts all weekend as well as that morning. Luckily, the whole thing was extremely efficient this time. No needle issues, no angle issues, no issues at all honestly. They were in and out pretty quickly. Although I do admit the pain of having Spinraza forced into my spinal fluid was a lot more noticeable than the last few times. But I will take the pain of the lidocaine injection and the full feeling of Spinraza being administered over the pain I’ve had to endure before. Sure, I was freaking out the entire time and ended up making a Supernatural joke that no one other than my dad understood,

but I’d rather be freaking out and believing it’ll be absolutely terrible and being proven wrong instead of having the mentality that everything will be fine and I’m proven wrong.

That probably sounds like the worst mentality to have, but hey, when you’ve gone through as much as I have, you tend to have a “cynical” perspective toward certain situations.

I’m just really glad that it all went really well, and I think my team had the same thought.

However, the reason why this injection went so amazingly is the best part of this whole ordeal. Apparently my radiologist documented the exact angle where my Doc had to place the needle on my body to get directly into where he needed to be. All of us asked at once what angle it was and we laughed. He told us and I joked about getting it tattooed on the injection site, either the exact number or just a drawing of the angle. Again, everyone laughed and dad teased me about suddenly becoming brave enough to get a tattoo. I love them, I’d love to get one, but I despise needles…and pain..

Only one of you knows how long it took me to make this.

Ten points to the house who understands the purpose behind my photo. No, I didn’t make the web.

What topped the entire appointment was that my team, whom we really should have a name for, all wrote in a birthday card and gifted it as well as an adorable teddy bear to me. I’ve named him, with the help of my grandmother, Razi for Spinraza ¯\_(ツ)_/¯ even though his given name is Brandon. Since that name doesn’t really have any meaning to me, his name is Razi, and you can see him holding the box of Spinraza for me in my lap in the photo above.

I didn’t have any sense of a headache and not really any pain. I was able to eat with relative ease and ended up playing Soul Calibur for a good part of the day until both myself and my dad realized that I should probably not over do it and I was put into bed.

Post Spinraza Injection #5

I’ve been out of it all week. Honestly I don’t really remember much of what I’ve done other than a few consistencies. The red tide here in Florida is absolutely terrible as well, especially this week unfortunately. So that’s also a variable that was thrown in at the end and has been upsetting my lungs and stomach. I don’t have much of an appetite the week after my injection as is, but this time I’ve had quite a bit of nausea…

However, I have noticed a bit of strength improvement already. The day after my injection, I was getting dressed and as my arm was being pulled through my shirt, both myself and my dad realized that I had helped in putting my left arm up through the armhole of my shirt. It took us both by surprise and he slightly loosened his grip on my arm to see if I could hold it. I did. For about a second. Maybe. Either way it was totally unexpected and new. Obviously, as it was unexpected. Man, I’m tired.

Pre/Post Spinraza Injection #5

So, I have a few videos for you all as Tumblr has finally gotten it’s act together and allows me to post videos within my post.

Visual #1

Dates each video was taken:

1. September 4, 2018
2. September 11, 2018
3. October 9, 2018
4. October 16, 2018

Okay, I lied, Tumblr hasn’t gotten with the program just yet. Only one video is allowed… A GIF set will have to suffice for the next visual.

Visual #2

October 24, 2018

Yes, I fed myself, wooooo!

Visual #3

October 20, 2018

It’s getting easier and easier to sit up like that. Also, as a side note, my physical therapist is only holding my head up. There is no physical way that she could hold my head and my body upright without decapitating me. So that torso control is all me.

Aaaaaaaand there’s my ten image limit… I really should find another way to blog…

This entry is slightly cramping on my creative juices due to the restrictions anyway and this needs to be published, so I am coming to an abrupt halt here and will begin on writing another blog entry that will hopefully allow my words to flow out a bit easier… Besides, I did want to fill all of you in on Halloween and all that good stuff. As well as an idea I’ve had buzzing around my head over the past week or so. I’ll cover that in my next update and see if you guys like the idea.

Until next time, my loyal followers!!

Little Sparrow Freed From Its Cage

September 24, 2018

Per aspera ad astra - Through adversity to the stars

Hello there everyone! I have quite a bit of news to share with all of you lovely readers, as it has been quite a while since my last update. Hopefully my writing habits will be a bit more consistent now, due to the main reason I am writing this update. So grab a cup of tea, or coffee for you Americans, and be prepared for a lengthy blog entry.

Commencement to Independence

For the longest time, it was my belief that graduation was just another event where I would only witness others experience the joy of being released from the dictatorship of homework and the school setting.

Much of my student experience has been infringed upon due to various circumstances; whether illness was to blame, being placed in classes my superiors wrongly believed I belonged, or unwillingly leaving the only place I called home, as well as exiting the lives of many I held and hold close in my heart.

Not everyone experienced the same scenario as I did, which is wonderful. Even so, for much of my life there was a common denominator.

Adversity.

Due to my disability, my experiences and memories of the school setting are extremely unconventional.

Which leads to the less self-pitying part of my screed. If it weren’t for all those obstacles, and more, throughout my existence as a student, graduation would not grant me the same satisfaction and pride as it does now to declare to you all that I am no longer a high school student. September 21, 2018 was the day I was set free.

Although there are plenty of memories I have to look back on that made my school days less dreary, so I shall not admit that every second of my years at school were terrible, as I had the good fortune of making a few friends along the way as well as learning some lessons that allowed me to grow as a person.

So I thank all of you who have stuck with me through the good times and the not so good times, because I couldn’t have made it here without you.

I’d especially like to thank my first teacher who set me on the right path to homeschooling. You know who you are, with your huge green duffel bag full of wonderful toys each day as we sat in the garden room. Thank you for always being there for me academically and as a friend. You mean the universe to me.

Every experience and every person that one encounters affects the future, individually and worldly, good or bad, long or short. Because, who knows? Maybe one day someone who experienced something they perceived as awful will change the life of another so someone else will never experience what was already lived through by another.

Celebration?

To celebrate this momentous occasion, my grandmother and I designed what would normally have been the top of my cap to go along with my gown.

Then we made a message in a bottle, with the message being the poem The Road Not Taken as it is our favorite poem.

But the most important component to all of this is the timing of everything that has unfolded over the past few weeks.

Enjoy the first ever gif I have ever created, of course it’s to do with Stephen

I managed to finish the last of my exams the day directly before my grandmother’s birthday, which wascoincidentallypurposefully happened to be on my cousin’s birthday. Then, on Friday, I was officially set free from my classes on the birthday of my great grandfather. Everything took place over the course of three days, and three birthdays of three people that mean the world to me.

Funnily enough, exactly one week to the day, another event unfolded spontaneously. I was granted the most amazing graduation gift. A friend, a very old friend, of tremendous significance and value to me. We had not seen each other in almost nine years, but we always kept in touch. Last Wednesday, we broke our hiatus and had lunch together with our grandparents. I felt like I was in a dream. I couldn’t believe we were even in the same room. He has seen my old self, my pathetic self, and my happy self, and he never left. He’s one of a kind and I don’t know what I would do without him. Making him laugh after taking a nervous drink of water while we were at lunch and burping due to my liquid consumption was one of the highlights of our visit together. Hopefully we won’t have such a lengthy hiatus between seeing each other again, which neither of us believe will happen. I already can’t wait to see him again.

Then on the Saturday following that Wednesday, I swam with my other best friend who happened to come home from college that weekend. I honestly don’t remember the last time we just chilled out in the pool, or anywhere, and hung out like two normal teenage girls. Granted I did complain quite a bit about school work after we got out and had lunch, but that wasn’t the entire visit. It felt so normal to just hang out with my best friend, and I can’t thank you enough (you know who you are if you’re reading this). I couldn’t have asked for a better way to finish my classes.

But graduation is supposed to be a big deal, right? A huge celebration is supposed to take place, right? Well, I honestly have no idea how else to celebrate my accomplishment. I would love to have a party and do something the way everyone else does, but many of my friends and family live far, far away. So out goes that idea… Nevertheless, if no other celebration takes place, I am forever grateful for being able to visit with my friend from New Jersey thanks to his and my grandparents.

Moving Forward

Now that I have soooo much time on my hands, I don’t know what to do with it! Well, I do, but it’s only been almost a week since I finished my classes and it’s still rather odd. I spent the weekend creating and improving a sort of sketch that puts together my Halloween costume. Yes, I’ll be 19 by then and many will say I’m too old to do Halloween, but you know what? Adults are allowed to dress up and have fun too. Halloween is not just about the candy, well not to me anyway. To me, it’s about letting yourself be free to be whatever you want to be for one day of the year. As it seems that it is only socially acceptable to dress up when one is an adult around Halloween, if one were to dress up any other day of the year you end up being labeled as a psychopath.

Okay, maybe not a psychopath, but anyone dressed up as a character or dramatic makeup is worn outside a concert, theatre club, comic convention, or Halloween, etc., side glances and glares will be made.

I decided that I will be dressing up as my own version of Sherlock, as long coats are as much of a pain to get on as a dress. I have a few components of my costume together, but I still need the hat, scarf, and maybe shoes? I may just go with a pair of short boots that I have as finding shoes in my size is an entirely different story.

I wasn’t sure if the coat I had would look Sherlockian enough, so I decided that I would put together a sketch of my outfit to see how it would look. So I put this together.

Originally, as you can see, there was no face. But I worked on it and worked on it over the past few days and this the outcome. In the beginning I did trace the undershirt, but that’s it. I figured out the rest. I’m very proud of it, as it is the first drawing I’ve done in quite a while that I haven’t gotten angry with.

Having this freedom has made me realize that after a few days of numbly looking at social media, I am suddenly craving to learn new information and I miss my math and science classes. I think that within the next week I will unconsciously start to read books again just from the slight need I’ve had to expand my knowledge again. Maybe I’ll even start writing stories again due to new knowledge, as I have written down a few ideas for short stories the past few days. In the words of a good friend, the possibilities are endless.

Spinraza News

Luckily I have school finished to get through my next injection. I was reminded that I have to go through re-approval from the insurance, making my injection date is a week later than I wanted. This week I have to get blood drawn again as well as other tests.

Speaking of tests, I had to do a strength test last week, my first one after having Spinraza. My results have to either stay the same or improve in order for the insurance company to say I can keep having Spinraza. Needless to say, I was terrified that I wasn’t going to improve due to their standards. I’ve noticed more strength in my legs than my arms, granted my right arm is noticeably stronger, but I did not anticipate the evidence the strength test would grant me.

The first test was to tear a sheet of paper. No big deal, right? Wrong. I had to try to tear a piece of paper that was folded four times. I tried and it didn’t happen. So my physical therapist unfolded it so it was in half. I believed that I was trying to tear it wrong as I was using my nail to start the tear. But I was wrong. That’s how you physically tear a sheet of paper when you pinch it. So when it cooperated and I split the paper down the middle, I was like “okay, I could totally do that before Spinraza.” Again, I was wrong. When I did the baseline test, I was able to rip the paper but only if:

1. it was started for me
2. it was a single sheet unfolded
3. it only ripped sideways not straight down

My physical therapist kept my old paper and showed it to me to prove that I had improved. After I saw the paper, I felt like Captain America

Go ahead, enjoy that gif because Tumblr doesn’t allow more than 10 images so that’s the last one guys

Once I completed that question of the test, the test was gravy. I was actually able to do other things as well such as:

• lifting a weight I couldn’t before
• completing a short maze test without stopping my pen
• pressing a stupid light button and making it stay on
• opening a container that was entirely too difficult when I tried six months ago

I gained 5 points in the scoring system, from 11 to 16 points. I still can’t get over it. So much has been going on the past… Well, year, honestly. Between myself and my family members, it’s been nonstop.

Well, I think I’ve written enough for this update, probably too much… But whatever, if you guys enjoy these updates you don’t mind. If you don’t enjoy them… Well… ¯\_(ツ)_/¯

2018 SMA Candle Lighting

August 11, 2018

Hello again everyone! Today is the day of the SMA Candle Lighting for this year. The photo above is from a long time ago, it is of me in the swimming pool when I used to be able to swim with boundless energy and without assistance of a flotation device. Hopefully those days will return to me soon with the help of Spinraza.

This photo, to me, is an example of hope, as many rehabilitation programs consist of water therapy. Moving in the water is much easier than walking on dry land.

The Candle Lighting means so much more to me this year than any other year I have participated. In previous years, it was to help spread awareness about Spinal Muscular Atrophy to allow people to be more aware of this extremely rare disease. But this year, this year it is completely different for me. With Spinraza coursing my veins this year, I feel like Spinal Muscular Atrophy has a run for its money now. Now there is a future for people with this disease, even if they cannot get this amazing medication yet. Scientists now have the key that will open the door to curing this illness that takes lives away.

This year’s Candle Lighting is more than just putting a flame to a candle, that flame signifies the energy that gathers from all the people doing the same thing around the world for the same reason. We are energy that was given to us by the stars, now it’s time for us to use that energy to give the SMA community hope and happiness. As today is the day that we do not think about all the struggles we had to endure to be in this specific moment, we just live in today instead of the past. We just hope that one day, we won’t have to light these candles anymore because this disease will be eradicated.

Oh, and I almost forgot to mention the most important part! When your candle is shining bring, please send me a photograph either with or without yourself in it so I can boast to the world that we will not give in to SMA.

So, what do you say? Will you join me tonight?

SMA Awareness Month

August 1, 2018

Hello, my lovely followers! It is the first of the month and I have a bit of an update for you all.

Today is the first day of August and today marks the first day of SMA Awareness Month. To mark this special day, I am currently watching/listening to The Theory of Everything while writing this update. Honestly can’t express enough how much I worship Stephen…

Anyway, the month of August has a very special day in it. The second Saturday of August, the eleventh, is the SMA Candle lighting that occurs every year, and last year was the first year I made a severe impact on the social media world.

Thanks to Andy Biersack, more than 1,100 people saw and interacted with my tweet about lighting a candle for those who lost to SMA and to those still living with SMA. It was absolutely amazing and extremely humbling to have the boundless tweets coming in with people sending gifs of candles or finding candles from around the house and taking photos of them to send to me.

It would be absolutely amazing if any of you lit a candle to raise awareness, once again, for Spinal Muscular Atrophy. There is no pressure if for some reason you can’t participate, but if you do, it would be greatly appreciated if you sent me a photo of your candle or of you with your candle. I’ll send out a few reminders in case anyone forgets.

My next bit of news is that I found an article in a magazine while at the doctors about a family who has a little boy with SMA and how he got Spinraza while it was still in the clinical trial phases. This story was in a regular magazine, an Easter magazine from this year. And. SMA. Was. In. It. The article is here if you want to read it.

JOIE DE VIVRE PHOTOGRAPHY

Now, for my last bit of news. I had to write a poem for my English class, so I decided to write it about the past few months. I discovered that it’s been nine months since my grandmother insisted on contacting someone to get the ball rolling on getting me Spinraza. How different the world was just a year ago. I didn’t even think I would be where I am today.

So I wrote a poem, and this poem means more to me than anyone will ever know.

Initium Novum

By:D.S.S.

It all started with a dream.

The future was unclear,

Bursting at the seams,

After living in fear

Of the unknown.

Time to get going.

Time to act.

Get in the car,

Down that winding road.

Wheels are turning.

The cage door opening,

Wings unfurling,

Emotions swirling.

She will not surrender.

Although clipped wings hinder,

She will fly, oh will she fly,

Into that starlit sapphire sky.

The road becomes narrow,

Obstacles arise,

A constellation

Of consternations

That challenge the view

Of the world in the eyes

Of the little sparrow.

Despite these drawbacks,

She’s chosen the right track,

On this bumpy ride ahead;

For this little sparrow,

With internal candle burning,

Looks ahead to freedom

Yearning.

A new dawn breaks,

Mountains fading from sight,

A clear road ahead,

Flying into the light.

It all started with a dream.

Straight To Chopping

July 20, 2018

If you don’t understand the title, click on the video camera

Hello there everyone!!! Today has been quite a day and I thank Spinraza for my newly discovered data. As you can see in the photo above, I actually took a selfie photo of myself in the mirror of my bathroom. I was actually a normal (ew) teenage girl for a few seconds! This isn’t something that happens very often, folks, so mark it on your calandars! I’m kidding about marking your calandars, or am I?

Anyway, the reason why I am so excited about this, and other things, is that if you look closely at the photo of me there, you may notice something different about me.

Is it my hair?

No.

Although I do believe an older man called me, “young man” yesterday…. May need to keep my hair a bit longer in future???

That’s off track.

Is it my shirt?

No.

But it is the shirt I wore for my last injection. So that’s kind of significant.

Is it my makeup?

Just kidding, I don’t wear that. Much.

If you guessed before reading about all these little random thoughts, brownie points for you. If not, then you definitely aren’t Sherlock.

I am sitting up much straighter than I am normally able to tolerate.

Why is this a big deal? Well this means that my upper body is beginning to have a bite of the good stuff. Meaning Spinraza is actually sharing the love and allowing me to sit a bit more normallyregularly straight. I used to sit up straight and tall, but that was directly after I had spinal surgery and then I got a new chair that was technically a loaner and it screwed up my posture which lead me to this moment in time.

Don’t get loaner chairs, kids. It’s a trap.

But something that really surprised me was the fact that my physical therapist…

I know you’re reading this so here’s a hello from across the Internet to you! Have a Reid wave you Criminal Minds mutual lover you ❤️

I’m sorry but that had to be done…

Anyway, my physical therapist emailed my grandmother about the photo I edited with all four injection photos side by side:

That one ☝

She noticed that my posture changes with each photo. Keep in mind, as she said, that I could have been seated differently, or maybe I wasn’t as tired one day compared to another… But let me give a little recap of each injection and how stressful each one was in comparison to another.

Thefirst injection photo was taken after a relatively easy procedure. I had severe anxiety that day before hand, but after it was all over, I’ve never felt so relaxed… This was taken at around 11-11:30am for a 10:30am appointment.

Thesecond injection photo was taken after the doc decided to use a shorter needle, so that was a bit uncomfortable compared to the first one. The headaches after that procedure was absolutely hellish, but other than that it was alright. This was taken at around 9:30-10am for an 8:30am appointment.

Thethird injection photo was taken after the doc couldn’t get a clear enough image of the entrance to my spinal fluid and accidentally hit a nerve (literally and metaphorically). That one was not fun. This was taken at around 11-11:30am for a 10am appointment.

Thefourth and final injection photo was taken after the worst pain experienced in my entire life, and that’s saying something since I was a reckless child and have had my chair topple onto me numerous times. For some reason my back went into complete spasm. Luckily this occurred when the needle was taken out, not being put into my spine. I never screamed so loud and for so long. Okay, maybe when they’d put more medication into my foot IV after my spinal surgery, but I whimpered more than screamed.

Anyway, I underwent a lot of pain after three of the injections, and a lot of stress. But my posture noticeably is different in each picture. Oh, and no, my dad most likely had nothing to do with the fact I look fairly straighter in my chair as he also sees everything that happens to me during the procedure as I ask for him to be in the OR in case something happens and I need him. Which I did this last injection so it was the right move on my part. So he is as stressed out as I am, and tired.

My other deduction about my seating is the fact that it got ruined after I was put into a loaner chair for about a year and my excellent, newly fixed posture went in the toilet since the company I used couldn’t completely accommodate the way I sat until my actual chair was ordered. They tried to fix it once I got my chair that I would really use and I absolutely could not tolerate sitting any straighter than the Leaning Tower of Deziree.

My terrible 5 minuet edit depicting a long dead joke. But it was worth the effort.

The next bit of news I have for you all is that I tried something that my previously mentioned physical therapist suggested. I made a video of me doing said activity, but Tumblr is a pain and wouldn’t let me add a title or photos along with the video so I posted it just before this post. The link to it is here for those of you who want to see it immediately this second instead of at the very end. Either way, you will see it. The commentary is comedy, so enjoy.

Lastly, I finally completely finished semester 1vof my senior year!!!

Now all I have to do is finish two classes to be completely finished with high school. Beyond excited to actually be able to do what I want to do for six months and just read because I will have nothing else to do. Actually, I should really start doing that now as I have more time… Hmmm…

Anniversaries, Psychology, Music, and Improvements

July 16, 2018

Hello there my lovely readers! Today is quite a special day, any guesses as to why? Well, today is the three month anniversary of getting my very first injection. The day my life completely and utterly changed for the better. I’ve had quite a few of these revolutionary dates, but I feel this is the most important… At least, at this moment in time it is.

With this anniversary comes some more information that I have gathered from new experiences. This post is going to get a bit personal, so if you don’t want to read this I totally understand. So, I have titles in this not-so-little update to help those of you who want to skip the chick flick moments.

The Psychology Behind Spinraza

Over the past few weeks,I have noticed a considerable decline in my mental stability. I am not exactly the most stable person on the earth when it comes to keeping a check on my emotional responses, but I was just absolutely out of control. I didn’t like it. Who would? I thought I was loosing my mind, and I was. Kind of. I cried more than I have in a few years, over stupid stuff, out of frustration mostly though as I have no other outlet to release such irritation. Plus I have been getting severe anxiety that just seems to consume me. My mind is the only thing I can rely on, and that was conking out on me.

I normally have a strategy to get me out of this state of mind, which sounds kind of stupid but it would work. However, I was so far gone that even this strategy didn’t calm me down and I didn’t know why. That is, until a few days ago when my brain began to cool down.

I was in the car with my grandmother and we were discussing how I have been acting lately. I knew, I know, it was unacceptable, but I just didn’t know what was going on and why. My analytical skills were absolutely gone. My grandmother, however, reiterated the same thing she had been telling me since I first started this whole episode.

All of these little feelings that I have been experiencing are all occurring as a result of Spinraza. Now, why would this be? Well I’ll tell you why.

Since October 10, 2017, I have been on a roller coaster that never stopped. That was the day that started all of this, when I happened to notice a red Mustang for sale. It was red and black, and not one of the newer pieces of garbage. It was beautiful, and it was my dream car. I made this observation out loud to my grandmother, to which she replied that I should start making goals. If I wanted to drive this dream car of mine, I had to picture it. But there was this small problem that prevented me from believing that simply picturing something would grant my wish, and this small problem was the fact that I am severely physically disabled. These were all the thoughts that went through my head before I actually had some sense of hope.

So after quite a bit of banter, she convinced me to let her email the hospital that I had previously signed up with. I believe I have mentioned this before but it’s just a bit of a recap.

This situation, of course, caused me to have an overwhelming feeling squeeze my chest. It took everything in me to not have the salty tears brimming behind my eyes to fall. But I was unable to resist. I have had this possibility held in front of me too many times. I couldn’t bare the thought of more disappointment. But my grandmother couldn’t let this go. She convinced me to let her write an email to the Hospital.

So she did.

We got a phone call the next day. It was my doctors’ assistant. We couldn’t believe it. But you know what they say, if it seems too good to be true, it usually is. That was definitely the case in this scenario. She informed us that the insurance companies had just approved the medication, Spinraza, this summer. Really, just a few months ago. She even said how they administer it right there at the hospital! They have a few patients that they were treating already. The news were just getting better and better. But then, there was the hard blow.

We cannot treat you.

That was the first time my roller coaster went all the way to the top, then plummeted. This was also not the last.

My point is that I have had so many ups and downs since that day, to the time of the approval from the doctor that I do have a space in my spine to have the injection, to insurance company approving Spinraza, then the phone call asking if it was okay to ship the medication to my facility, then lastly my injection day was booked and I was in the operation room getting the procedure done. All in the matter of a week. We all haven’t stopped for months and now that I have had all of my loading doses, it has all caught up to me.

As I’m writing this, I do realize how weak and sappy all this may sound, but I’m not writing this all down for entertainment. This is probably something that should be kept in a diary, not something that is being posted out there for everyone to see. But there are people out there that are undergoing the Spinraza treatment just like I am and who knows, they may be feeling just like I am, and I hope that one day this blog may help some people.

Pierce the Nights with Lyric Kites

This next part of the update is a bit more cheerful than the last, as is the next part. I decided to create a… Mixtape, if you will. Music is kind of my go to whenever I need to calm down and/or think. So I figured, why not make a playlist that depicts what I’m feeling? Each song has a meaning behind it, so if you listen to, or read, the lyrics of each song you should be able to understand why they’re there. Oh, and just in case the link doesn’t work, I put each song down below in order if you want to listen to the playlist but can’t.

My Spinraza Mixtape

High Hopes - Panic! At The Disco

Control - Halsey

The Middle - Jimmy Eats World

On Top Of The World - Imagine Dragons

Unsteady - X Ambassadors

Sweet Blasphemy - Black Veil Brides

Best Day Of My Life - American Authors

Happy Song - Bring Me The Horizon

Believer - American Authors

Walk On Water - Thirty Seconds To Mars

Your Can’t Rely - Counterfeit

I Won’t Back Down - Tom Petty

Boulevard Of Broken Dreams - Green Day

Fight Song - Rachel Platten

I’m Not Okay (I Promise) - My Chemical Romance

I’ll Be Ok - Nothing More

Stay Alive (feat. Matt Skiba) Andy Black

You Don’t Know How It Feels - Tom Petty

Sing - My Chemical Romance

Mr. Doctor Man - Palaye Royale

Believer - Imagine Dragons

Mad Hatter - Melanie Martinez

You’re Gonna Go Far Kid - The Offspring

Ready Or Not - Bridget Mendler

Party In The U.S.A. - Miley Cyrus

Give It All - Rise Against

Breathe - Sam Wickens

Home - Phillip Phillips

Swing Life Away - Rise Against

The Light Behind Your Eyes - My Chemical Romance

Run Boy Run - Woodkid

The Climb - Miley Cyrus

More Improvements

Lastly, I went swimming yesterday and I was able to put my hand up on the side of the pool and lifted my right hand up for a little wave.

Not only was I able to do this, but I also fed myself a few pieces of strawberries last night. I even helped my left hand with my right hand, meaning I actually had enough strength in my weak hand to help my dominant hand! I’d say that’s a pretty great improvement. Oh, and I also fed myself this morning as well. An entire piece of bread. Not just the one or two pieces that I would normally barely have enough stamina to eat. The entire plate. I was even able to do two assignments afterward.

I’ll tell you one thing, even though this has all psychologically screwed me in loads of different ways, Spinraza pumping through my veins is definitely worth every pain and anxious thought I have experienced.

The Road Less Traveled ~ by Robert Frost

Independence Day

July 4, 2018

Hello there my beautiful followers! How has everyone been? Have those of you who celebrate this day had a good 4th of July? I certainly have. It’s been a crazy day. I was debating on writing a little entry just for the occasion of this American holiday, but then a Spinraza update came into play and I just had to fill you all in, if not just for pure documentation.

As you all know, Americans take this holiday very seriously. This is when our neighbors obnoxiously light off fireworks from even just before dusk, until midnight or until a police officer drives by and gives them a polite warning. Yes, I have experienced that exact situation. It was funny.

But today isn’t just about fireworks, it’s also about celebrating our ancestors freedom from England (sorry my English followers, but know I am on your side) as well as celebrating the fact that we are American!Even if pretty much every American in this country is technically an immigrant according to our history, bloodlines, and Ellis Island’s existance… But I won’t mention that… What better way to celebrate being American than going swimming? Okay, that sounds kind of stupid, but that is what we do on this particular day. Swimming, hot dogs, hamburgers, beer and fireworks. The American dream…

I got in the pool after lounging around for half the day watching Supernatural, then getting dressed, and socializing a bit with my aunt. It felt so cold compared to my warm body that it took me a while to commit to getting in, but I was dragged in and the exothermic reaction began. For those of you who don’t know what that means, my body became the same temperature as the pool since the heat from my body expelled into the water.

Science.

As I floated around the pool, I had an idea. Thanks to my cousin, honestly. That, and my physical therapist as I have done something similar with a ball.

I asked my grandmother to put a pool noodle under my knees to see if I could push it down. So she did that, and nothing really happened so now it was under my heels. I still couldn’t really do anything so now we moved it to my feet. I could kind of balance on it, and push it under the water. But then, my grandmother had an idea. So she put the two ends of the noodle in each of my hands while my feet rested in the curvature. Well, here’s a visual.

I discovered that I can push the noodle under the water like so.

I can rock side to side.

Then I traveled down the length of the pool!!

Sadly, I can’t post the entire video on here, or turn the videos right side round, but I believe that these little Gif sets show enough of what I can do. I could never even hold on to a pool noodle before, so just that is a huge improvement. My right hand did give out after about a minute of doing the little swim down the pool, but I’m ecstatic with my little victory.

My legs and arms are now quite sore, but it was worth it. Especially since I got to see my best friend afterward and I chilled with her family for a bit, even if we didn’t get to hang out for fireworks.

Overall, I’m so satisfied with my improvements. Tomorrow I’ll go to acupuncture and see if maybe some other muscles can be activated.

“However difficult life may seem, there is always something you can do and succeed at.” ~ Stephen Hawking

A Cutting Edge Update

June 29, 2018

Today day started off with a trip to Cracker Barrel as I finished my Economics course yesterday. I figured I’d treat myself to a caramel coffee as my cousin had something similar when we went there with her a few weeks ago. I’m glad I did as I discovered as we were waiting for our food that I finished my class with an A, and that my C on my end of year exam didn’t bring my grade down as much as I expected. It’s been an absolutely amazing day with my aunt and grandmother, we had a Girls Day Out with breakfast to start, then Michaels Craft Store next. We bought quite a bit and ended up with some beads to make my aunt a Spinraza bracelet like my grandmother, father, cousin, and I have. This was the end result.

It was thanks to doing is bracelet that I ended up handling scissors.

This is not something I have been able to do. Ever. The amount of Occupational Therapists that tried to give me scissors that were “adapted” to “help me” cut independently… I won’t get into that. But today, I saw the scissors, picked them up with one hand, put my fingers in accordingly, and started cutting the air. So my grandmother gave me some paper and said have at it. So I did. I even cut a circle out of the paper, which I stupidly didn’t record, but I folded the paper in half, and cut half a circle to make a whole circle. I cut a double thickness piece of paper. Cutting just a regular thickness is usually difficult enough, but no I had to make myself justsee if I could do it. The rest is history!!

Dose #4: Hulking Out

June 25, 2018

You can’t get lost if you don’t know where you’re going…

Today is the Monday after my fourth and final loading dose of Spinraza. So I figured I would put in all the changes I’ve noticed as of late into this update, as well as how the procedure went.

I’ve been in quite a bit of pain since receiving this last dose, no one seems to know why but my entire lower back went into a muscle spasm once the doctor took the needle out. My back has been in quite a bit of pain since this incident, but I’ve noticed that the little bit of strength I’ve been gaining has gone into a kind of overdrive.

I grabbed my grandmother’s arm a few weeks back and didn’t let go. This freaked her out quite a bit, but I was too busy laughing my head off since I actually had the gripping strength to freak her out this way.

Yeah, I’m evil. Sue me.

The most recent thing I’ve noticed is the fact that I can actually noticeably kick. Even pull my legs back or just keep them still to put shoes and socks on. My arms and my hands seem to have noticeable strength gained as well. I tested it out on my cousin, father, physical therapist, and now my aunt and they all believed that there is definitely a noticeable change.

Especially today. I had physical therapy today and we were doing some leg exercises that I hadn’t tried before. I ended up being able to put both of my feet on a medium sized ball, a bit smaller than a beach ball, legs bent, then I straightened my legs out so the ball was still under my feet but now farther from me. But the kicker was that I could bend my legs back up.

An awkward little picture here to show you all how it works. My physical therapist’s hands are standing by in case my legs gave out as I did do this activity a few times before filming it.

Then, later today, I found out that I can lift my head a bit easier. Every day I seem to find something else that is different about me. Whether it’s me looking like I have more energy, or the fact that I only feel a bit of pajn instead of tiredness. Dad said the other day that when I got a twinge in my back from the injection site while he was lifting me, my entire body spazzed. Now, I’ve groaned, I’ve yelped in pain, I’ve even had by ribs or back pop while being lifted, but my body would never react to that.

All of these little changes have been absolutely terrifying, as I have never been able to do any of these things before… But I have to admit that it certainly is exhilarating.

As my cousin said to me earlier today, “my atoms are fizzing.” Which couldn’t be more true.

Gamer Girl in Disguise

June 17, 2018

Today I got to hang out with my dad for Father’s Day and before I have my last loading dose tomorrow. So, while he was working a bit and relaxing this morning, we discovered that our favorite racing game, Burnout Revenge, is now backwards compatible from the Xbox 360 to Xbox One! I played it for about an hour, winning some cars for us to play.

Now, here is why I’m telling you this. I haven’t been able to play video games properly in ages. Sure, I joined gamer club in my junior year with a good friend of mine being president; but when I played him in Soul Calibur, and beat him one of the times, my entire body was shaking and I had no control over my head afterward. It took so much energy to just play one game. I even sort of got teased by the other members because they knew how much I wanted to beat my friend; and they just thought it was because I was so hell bent on beating them that I practically collapsed when I won. But I think my friend knew why I was shaking and weak. It was because I was reallyweak.

But not today.

Today, I won a little victory that I was praying to Castiel would happen.

From Human to Mermaid

June 24, 2018

Hello there everyone. I deeply apologize for the lack of updates lately, but my wonderful cousin flew in from England a few weeks ago and I was going to publish an entire update on how that went. However, I have reconsidered this as it is now the length of a novella… I have it almost finished but I believe my updates need to start being more consistent as I am now starting to see real noticeable changes in my strength as well as little pains that are new. So the first update I will publish is this one. There will be two or three, including this one, published in a row. So get ready for some real exciting news.

The day this event occurred was June 9th and this was the day I really noticed a Spinraza “miracle”.

I was swimming on my back with my floating device. I decided to just float around instead of having my weights on. Yeah, that sounds kind of odd, so let me explain.

Before I had spinal surgery when I was eleven, I used to swim like a fish. Or, as I’d always say, a Mermaid. But after surgery, I lost my mojo and haven’t been able to swim the same again. So I wear a floatation devise around my neck to keep me topside and weights around my ankles so I can walk along the pool floor. Everything in my body works perfectly fine, my muscles just don’t have the strength to do what I should be able to do.

As I was swimming around the perimeter of the pool, I slightly pushed off the wall to avoid the tubing that connected to the pool cleaner. My grandmother noticed this and wanted to see if I could push off the wall fully. I said to her what I just did was a fluke and that I was sure I could do that before. But she insisted. So I obeyed. Man am I glad I did.

My cousin pulled me back to the shallow end and my grandmother set me up against the wall with my feet up against it. My knees stayed upright and I was ready to push off. She let go, and I ended up going half way across the shallow end. I looked at my grandmother and back at the pool wall. I asked her if I could do that before, but I already knew the answer. I asked her if I could do that again, so we reset the positions and I was able to do it still. I looked at my grandmother, then my cousin, then my grandmother again and I burst into tears. I didn’t know where to put myself. My dad has tried for years to get me to swim like a normal person with pushing off the wall and kicking my legs one at a time and making my arms help. But he always had to pull me off that wall. He’d let my body try and push off before helping, but I never went far. Sure, I’ve noticed that I have a stronger grip now as well as resistance in both my legs and arms, but this wasn’t something I was expecting.

I spent the rest of our time in the pool experimenting with how I could push against the wall. I discovered that even if I was just put up against the wall without being pushed, held, then released, I could still push off a little ways.

This new ability was then duplicated a few days later when my dad came over to swim as well.

On Monday, June 11, 2018, Dad came over to swim late in the afternoon. I was extremely glad he was finally able to make the time to come visit for longer than twenty minutes. Not just because I missed him, but because I knew how much he wanted to visit with our cousin.

When I showed him my ability to push off the side of the pool, he grinned. I knew he would be my final confirmation as he was the one who wanted me to swim as normally as I could.

So as my grandmother, cousin, father, and I were all in the pool, my grandmother kept pushing me against the wall. I was able to be pushed up against it, relax my legs to bend up, change my potential energy to kinetic, and push off the wall myself instead of being held up against the wall. I was jumping. And it was absolutely amazing. Everyone around me was talking and I didn’t notice a thing while I was in my own little world.

This is not the last of what Spinraza will change for me, and I am even more excited to find out what it will do next.

Welcome to My Life.

Isn’t it nice?

To your left,

The beaches are prohibited.

Looking to your right,

Amusement parks are unavailable.

I hope you don’t need groceries,

Or crave a shopping spree.

The stores are no longer as they were,

They now are home to Terror.

A cough stifled in isle thirteen?

Cover your face with your sleeve.

Someone sneezes a few feet away?

Leave without delay.

Reality has become virtual,

Your computer is now your school.

Study with a friend using a webcam,

Spend time with them while you can.

No one can touch,

You now live in a bubble.

Craving human connection?

Look to your electronic screens.

Don’t forget to wash your hands!

Wash them after every activity.

Oh, and don’t forget,

Keep your distance from possibility.

Life is limited,

It’s unpredictable.

Life is precious,

But very messy.

You didn’t realize it,

Or give it any thought.

Why would you?

Until you had time to sit,

And finally caught on.

You are experiencing chaos.

What a frightening existence.

You are experiencing My Life.

Enjoy your stay.

ᛞᛋ

Attempting…

Feb. 19, 2020

A promise is a promise, so here I am.

As today is Tuesday, I had physical therapy. So Zoey came early to make sure we got ready and out the door on time.

I’ve not been a morning person as of late, as I haven’t been sleeping well or staying up too long talking to my friend or reading. But this morning… I got a message that woke me up pretty quick. It was from my friend that I mentioned yesterday.

The two of us make characters for potential storylines, and are always helping each other out when one of us comes to a dead end. This was something that my friend, Jae, was having me do last night. I just now got his permission to use his nickname, created by yours truly. Gods I hate the formalities of these things.

Anyway!!

He was writing a new character outline last night and asked for my help with it. So that’s what I did. In doing so, I woke up to a rough draft of it. First thing I noticed was the height. It was my height. I guess I know why he asked now. As I continued to read, I fell more and more in love with the character. He calls her a Techno-Necromancer, and she is the coolest character I’ve read about that is based off cyborgs. It certainly got my brain going. Tomorrow I’m hoping to sketch her, but we’ll see.

Once I finished reading his work, it took me a few minutes to figure out how to say how much I love it. But I was able to type out something somewhat worthy of expressing how impressed I was, and off I went to physical therapy.

On the way there, as Jae wasn’t up yet, I had some time to read. Zoey, my aide, hadn’t read any more yesterday. So I figured I’d put some more space between where we are in the book. Plus, after reading the character outline, I got in a reading mood. Of course, this just made me speed read. Which, I’m not complaining about, but it’s much harder to stop reading once I get into the speed read mode.

Once we arrived at pt, it wasn’t long before I was taken back to the room I go into every week. Luckily, she had seen my blog before I arrived, so I didn’t have to explain too much of my improvements as she’d seen them already. So onto the table I went.

She had me sitting on the side of the table and tried something new with me. She had me pass a small ball from my left side to my right side. Scratch that-she had me do that second. First, she gave me a filled balloon. What she had me do with that was reach to touch her hand with it. I did so fairly successfully, but when I went to get her right hand on my left side, I couldn’t touch her hand. Only her arm. Which she said was good enough. I said it wasn’t. So I shifted my body weight to lift up my hand, and all of a suddenly it was touching her hand…………..and I was falling backwards. I dropped the balloon, catching my pt off guard and went to go get to it. Then explicatives started, weakly with a buttload of panic, spewing out of my mouth. Luckily, as I don’t use this language very much, this regained her attention back to me and she quickly grabbed my arms to keep me from falling. All I could see was the wall having a date with the back of my head. My heart rate went up so high.. but this little scare proved something.

I didn’t just fall. I slowly fell. I was able to keep my body from just tumbling over. This is a pretty big improvement, allbeit a terrifying way to discover this improvement, but an improvement nonetheless.

After I regained my nerve, we then proceeded to utilize the ball. If my pt held my right elbow, I was somewhat able to use my arm to grab the ball.

After that, my body was about ready to give out. Down I went onto my back. We did some more exercises and then the session was finished.

I’m sorry this is getting rather fast paced, it’s getting late and I want to submit this.

After physical therapy, I check my phone and see Jae texted me which cheered me up a bit after having an anxiety attack over not being able to do something people think I should be able to do. He didn’t respond right away, so I went back to reading.

We went to Panera, and chilled out there for a while as we ate. When we finished, we went back in line to get my dad a salad.

My day really isn’t all that interesting.

Dad was organizing his office and getting rid of some books, so I naturally took some. Luckily I did, there were a few I actually think I’ll read.

After that, bathroom then ear drops. I went to the doctor the other day to follow up on my prescriptions for my ADD and she checked my ears as I asked her to. The inner ear canal looks irritated, hence the drops.

After that I chilled in bed and chatted to Jae.

Dad and I had steak for dinner and we watched a new movie. Rush. Wasn’t a terrible movie, had a few actors I like in it.

Now I’m finishing writing this blog as I hear dad fast asleep. Which I am going to follow suit as soon as I finish this thing.

I’m told these are enjoyable…. But I’m not entirely sure as to why…. Let me know in the comments what you like about reading my ramblings and I’ll give you a shout-out in my next entry.

See you on the flip side

Starting…

Feb.18, 2020

Okay.There is no good reason for me to explain why this place became a gost-blog. Get it? Like ghost town? Yeah, I haven’t gotten any funnier. Anyway, thanks to those who said they miss my ramblings, I should be a smidge more consistent. Granted, it’s not going to revolve around Spinraza and my improvements anymore but I will try to do an entry everyday.

Let’s get started, then. I’ll begin with now.

Today - Monday

So, I started my day off as any twenty year old would. I woke up. Shocker, right? Someone might confuse me with a normal person! …Yep, still not funny.

After I finished my typical morning routine, outside I went. It was a comfortable day to sit out, so I had my aide set me up with my headphones at the patio table. I have gotten sucked into the Witcher Fandom thanks to my aide and friend Zoey. So, after she got me to watch a few episodes, I found myself stumbling across the books that gave life to the Netflix original. Best book discovery ever. In finding the books, I found Gwent. It’s similar to D&D, Dungeons and Dragons, only it’s strictly online. It is a strategic card game that I have been having a rather difficult time learning the phonetics of the game. Which is what I spent my morning learning. That is, until my friend woke up. He’s two hours behind me, so I usually try to fill my morning to make it go by quickly. I knew something was off with him the past few days, and today I found out why.

Now, what he told me brought tears behind my eyes. Ineeded to think. So, I pulled an able bodied person and decided to take a step away from the situation, and a step towards physical exertion to clear my head. The only way to do that was to get in the stander, and that’s what I did. Now I understand you two leggeds. I’ve been sore and thinking more dear since I worked out. It ended up helping both of us. The circulation didn’t just flow to my legs, it seems.

After figuring out how to remind my friend how much he means to the universe, my body seemed to also figure out how it is supposed to work. My friend asked how tall I would be if I could stand all the way straight. I found out today that I’m about 45t fin, thanks to his curiosity. To find this answer, I had to stand as tall as I could stand it. This totally wasn’t a pun 88 degrees. That’s how straight I managed today. My legs hurt.

This isn’t me at 88 degrees, but it was my today.

If this wasn’t impressive enough, this was after I couldn’t hold my head up for a good half hour before I sat down and my friend asked his question to change topics. Suddenly, I was holding my head up, and I was asked to go taller. Then, once my legs were done being on fire, I started experimenting while I was sat down again. I think a video is more appropriate than a description in this case. (Ignore the talking in the background. The girls are just freaking out)

And here’s a funny gif that shows how much I actually move

As you can see, noticeable movement. This is without a doubt something I’ve never done before.

My day finally comes to an end with my aid leaving, us bickering about who will finish the first Witcher book before the other, me helping my friend create a brain child, and watching Ford Vs Ferrari at the recommendation of my dad to get my grandfather to watch it. We both knew he’d love it. We were right.

It’s now 11:23 and I promised someone she’d have this to wake up to, so I’m just gonna put the finishing touches on this and chill with my friend for a bit.

See you on the flip side.

A New Way Of Doing Things

January 1, 2020

I’ll be making a New Year’s List tomorrow and posting it. From now on, I will be posting my art and the occasional update on my strength. Although, this will be tied into my art and poetry.

See you next time!

Dose #6: Added to the Mix

May 26, 2019

It is at the times of when we feel we no longer can that we always manage to prove ourselves wrong.

This was supposed to be posted a month and a half ago oops

Greetings readers, yet again, long time no write. These past few months have not been pleasant and writing this blog now is not something I have been particularly looking forward to writing… Although I will admit that seems to be my mentality for every one of these posts lately, which I apologize for. However, writing about my life isn’t all that easy. Some may argue that I could or should leave bits and pieces out, which I have seen others do. But I always feel like the rest of the story just doesn’t make as much sense when it’s done that way. Luckily, a friend of mine convinced me that it needed to be written, and they’ve fallen asleep on our phone call right now, so I ended up gathering the courage. Of course, as I say this, I am having second thoughts, but nevertheless, I will continue.

Picking Up Where We Left Off

My last big blog entry was definitely a heavy one. With me getting sick, discovering my love for poetry, and then being plonked this news that a fellow SMAer had passed and basically left me money from the contest we competed against each other in. Granted, it was his parent’s idea, however it did not feel that way when I was gifted his money. I mentioned how he left a rather large imprint upon my soul and that because of him I wanted to embrace the fact that I am apart of the SMA Community as well as the Disabled Community in general.

When I wrote this, I had no idea what Life had in store for me.

The month of February was the month of my sixth Spinraza Injection, February 25, to be exact. I was ecstatic to be receiving my sixth injection as this is the one that many have said on the social forums to be the one that really counts. The one where you notice bigger milestones to be achieved. The one that matters. So as the weeks go by, I get my blood drawn where and when I usually do, as well as other things, and wait. Then the Thursday before my injection, I get a phone call from the place where I get my injection. I thought it a bit strange to be called on the Thursday instead of the Friday to confirm my appointment for Monday, but I picked up anyway.

The phone call wasn’t to confirm Monday’s appointment.

The lady that schedules all of my doctor’s appointments had called me to say that my injection date had been moved to three weeks later. I couldn’t believe my ears. Apparently since my insurance had gone through a merge with another company, the paperwork to get my injection and medication paid for had been completely changed. Even though I had received a letter a few weeks prior saying everything that was pre-approved would not have any issues and coverage would overlap until the end of July.

Apparently not.

My immediate reaction was to bite my tongue and agree to changing the dates in my calendar. But emotions overruled my logic and tears began to stream down my face making it difficult to see.

Great, this is bringing back all those emotions.

I quickly changed the dates in my phone and thanked the lady on the other end of the phone before hanging up and sobbing as my grandmother held me after running to get a box of tissues.

The next few weeks were hell. I did not handle it well at all. I’m still having the effects from it to be frank. Even though the effects that I was experiencing are not possible to even occur. I was assured and reassured this. At least two more times after that phone call of having to move my injection date, as I was told two more times on the Friday that I still couldn’t have my injection. Every week was purgatory, every second was worse than the last. Then, to top it off, every day I felt my strength dwindling every second that ticked by. Which is the effects that I had been assured and reassured is not possible. Well I am here to assure everyone that their assurance is not true at all. Sure, molecularly, it’s still in my system until the sixth month mark. But the effects of the Spinraza giving me back my strength go straight down the drain after the four-month mark.

I may not be an expert at chemistry, but I do know that what I was experiencing was not psychosomatic. Getting tired easier, leaning over more, experiencing difficulty picking up my head again… The list goes on. Of course, due to this occurrence, I have found myself researching how genes work and how Spinraza does what it does down to the molecular level. In turn, causing this update to be a month late. Okay, it wasn’t just my curiosity that caused this update to be much later than I prefer, as I’m not only just regaining the use of my body the way I had before this hiccup, but the fog that has clouded my thoughts over the past months is starting to lift as well.

Gotta love my brain.

Now, there is a flicker of light in all this darkness, and that leads me to my next heading.

All Over the Place

During my roller coaster of emotions, I ended up acquiring a group of friends. Yeah, I have actually acquired a group of friends.

I’m growing up!

This group has helped me all through the month of ups and downs, so allow me to introduce them to you.

Our little family is quite the complicated bunch, so here is how we all refer to each other.

Dova is the founder of our family. She found us scattered all over the world, and brought us together to create our group. I owe her a lot for taking me in. Especially since she understands my crazy as she is as crazy-probably more-as I am. All joking aside, she is the first person to invite me into a group and I haven’t felt unwelcome.

Schiki is Døva’s longest friend in the group, and they refer to each other as Twin due to how close they are. I used to not talk to him much, that was, until we decided to phone each other. I haven’t been on a call as long as I have been with him since… Well that was in the past. Talking to him is as easy as it gets, never losing things to talk about. Granted, this applies to the rest of the family as well, but with this one, it’s different.

SD is the youngest of the group, I recruited her. She’s like the little sister I never wanted. (Sarcasm) SD is one of the funniest people I’ve had the pleasure of meeting, even if her humor sometimes ends up getting misinterpreted. But she has a beautiful soul and a voice to match it. She’s gonna hate me when she reads this hehe

Spike… Now that’s a character. He has many fascists which makes him interesting to get to know. He’s an amazing artist, easy to talk to, as is Schiki, and pretty smart. Him and Schiki are two I’ve had group calls with and we ended up talking about physics. This guy knows how to push my buttons, but who doesn’t, really?

Hybrid is an entity all of his own. He’s part of the family, but in a sort of complicated way. However, he’s a physics major which makes it easy for us to talk. Can’t really say much about him as he’s been away for a bit.

Death is a new-ish addition to the group, but he’s pretty interesting. Gets along easily with Spike and has a great sense of humor. I can thank him for introducing me to a video game that I can actually play.

The best way I can describe this group of ours as a whole is in the layout of a poem that I had written for one of our members during a moment of doubt.

We’re the puzzle pieces that get lost

And are found one day

By someone who took the time

To look

And to pick us up

And put us in our own puzzle

That creates a bigger picture

That’s just as odd as we are.

Every one of these people has helped me out one way or another. Sure, we get on each other’s nerves a lot as well, but that’s what happens in a family. I don’t know how I could have made it through my unknowns without them. They found me at my lowest and helped me get back to where I should be, and for that, I am eternally grateful.

The Sixth Battle

The day finally came where I could actually be given my injection. April 1st. Yeah, we had the same thought. Who would book an appointment as important as this when so many things have gone wrong already? Well, luckily the appointment actually was kept after being moved three times already. Three times the charm, I guess.

Even though this injection was an absolute pain to get, it was my sixth one which was supposed to be when I saw more extreme changes in my strength. So I decided to make my Spinraza crew a gift.

Those who were there to see the gift were blown away, but most of the crew for this injection was new. The usual staff was out for this, that, or the other, but my main nurse was there which was all that mattered at that point.

Of course, the complications with this injection weren’t going to stop simply because of the fact I was actually on the table about to have a long needle shoved into my back. Noooooo. The one time I decide not to put my earbuds in to listen to music is the one time the needle decides that it doesn’t want to find my spinal fluid sack in my spine. It took a good ten, twenty minutes to finally feel the spinal fluid drip out from the needle. Never had I welcomed that feeling so much in my life.

As each second ticked by that my doctor couldn’t get the spinal fluid out, the more I worried that they’d have to take the needle out and either redo it or book the appointment for another day. But everyone assured me that I’d get it that day no matter what, and they were right.

My injection site was in a lot more pain than previous times, as well as my lower spine when I put my head back to eat. But I was grateful to have the synthetic DNA back in my system. Although, more than a month later, I still don’t feel like I have all of my strength back. Especially when it comes to my core strength. But I’m hoping as I don’t have to go through all of this approval garbage for another year, Spinraza should build itself back up in my chemistry.

Anniversary

April 16, 2019

So scattered are my thoughts

On this day meant to rejoice

In celebration of a memory

That I thought would never be.

Something to commemorate

This day to celebrate

The gift of life

Being given to

An eighteen year old

Who believed that

Life

Was only for those who

Were special.