SMA Treatment ahead

In less than a year, the SMA community could possibly have a drug!! We are that much closer to treatment.

For those who are completely out of the loop:
I have Spinal Muscular Atrophy (SMA), a debilitating muscle disease of the major limbs (arms, legs, lungs, neck, etc.) There are 3 different types of SMA, Type 1 being the most severe. Most children are on feeding tubes by the age of about 8. Those with type 2 usually were never able to walk. And those with type 3 can usually walk until the age of about 12. This disease does not allow us to gain muscle, only lose or maintain what we have. Through these clinical trials, results have shown babies actually reaching milestone goals such as crawling and walking and even something as simple as keeping their heads up. All milestones which type 1 babies usually never reach.

I’m overwhelmed by the steadfastly results and all the futures that are going to be saved and changed when this treatment becomes available.

Now I know what some of you may be thinking and no this drug isn’t going to just magically make me walk. But it will allow me to gain muscle so I will be able to be more independent. My SMA is far too progressed to be able to expect a miracle out of this drug. I would need many of surgeries first so i don’t think it would even be worth it.

Having to rely on other people truly fucking sucks but I have no choice but to make the best out of it if I don’t want to be miserable every single day.

The main thing that sucks about relying on other people is having to use the bathroom. I can push aside hunger or a glass of water for an hour or two until my next Personal Assistant shows up, but having to use the bathroom and being forced to wait for it is the worst feeling in the world.

What I’ve learned from being in a Facebook group of other people with Muscular Dystrophy is that we all have similar struggles. And one of them is pee math.

Pee math is a mental algorithm we (those who cannot use the bathroom by themselves) created by the time we got our first wheelchair. So probably around the age of 3. Pee math is deciding how much to drink before your next Personal Assistant is scheduled to come help you. Pee math allows you to learn very important things about yourself…. aka how long it takes for your body to digest things. Mine takes an hour or more. So if my PA gets me up at 9am and the next person isn’t scheduled until 3pm, I would drink lightly or only if I was extremely thirsty until about 1:30. Then I wanna start drinking as much as I can to make sure I get all my fluids in but am able to release it all when I have someone there to assist me.

It’s very shitty I know. But it’s a lifestyle I’ve subconsciously accustomed to.

Well. Back to the drug that’s hopeful to come in the next few months.

I am beyond excited that I will finally be able to work out and actually feel like I’m improving myself. Right now, without the drug, I should be doing physical therapy everyday but I’m so discouraged by the fact that I’m never able to gain anything from it. When this drug comes out I will be able to buy cute workout clothes and actually use them for their purpose….. real talk. So many cute things. But seriously, I might just become a gym rat. And I’m excited.

I’ve lived my entire life in a wheelchair and finding myself and making something of myself. And I’m proud of that person thus far. Though, I’m not going to lie, I absolutely have spent nights wondering what my life would be like if I did not have SMA and could walk… but I’m also not crying at the fact that I can’t or will never be able to.

This drug is really exciting to me because I will be able to gain more independence, even just by the simplest of tasks like opening a door on my own. My main focus goal in the long run will to be able to transfer myself in and out of my chair. Specifically to be able to use the bathroom on my own. It is the most difficult yet simple task in my life that holds me back in any way. To have to make sure that if I want to travel any place I will need someone to be there to help me use the bathroom is one of the hardest obstacles I have to deal with on a daily basis.

With this drug, I will work my ass off as much as I’m allowed to- to get to my goal in the long run. My independence is the most fundamental aspect of my present and future.img_0200

My Mind is Danica Patrick.

When I can’t sleep my mind races. I think about anything and everything. I have yet to meet someone (friend or beau) that I can share all my thoughts with. It’s impossible. And I would probably sound crazy.
WebMD and myself have both diagnosed me with insomnia.
So what happens at this time of night when you can’t sleep?
Well, there’s a lot of ceiling watching for one.
But your mind starts to wander…. To like Narnia or something.
It’s so cool to actual realize how many things you’re thinking about at night. Throughout the day you’re always doing something and usually have a goal, whether it’s work or homework or what to cook for dinner tonight.
But at night my mind is so relaxed that it just decides to unrelax itself with irrelevant but oh so interesting thoughts.
Weird scenarios that’ll never happen in real life but I wish they did start playing.
Lots of “I wonder ifs”
A chance to thing about things I could possibly regret. (Dangerous)
That special someone.
That OTHER special someone.
Both of them together. Awkward.
What I would do if I could walk.
My friends.
Whether or not I’m a lesbian. (Def not)
If certain people are thinking about me.
WHAT they think of me. This one could get dangerous and cause some insecurities.
Who the next guy will be.
If I never get married.
What life would be like if we could fly.
If cars never run out of gas.
The thoughts are endless.

These thoughts are usually never said outloud so you think about them more than once. Do you ever stop to think if anyone else is thinking the same thing? I do. I wish I had the answers to all these questions. I wish my mind could somehow answer them for me to save me the chance of looking stupid for asking anyone.
Knowing what people are thinking is the most interesting thing in the world to me.

This is one of the things I thought about tonight… Insomnia. And me.

20140416-023043.jpg

Sleeping on a cloud of hopeless dreams

All my life I dreamed to be an actress. The idea of having my name known worldwide sounds so amazing. I doubt I’d be a good actress in the first place but still. A girl can dream.
Around my senior year of high school I started to actual give a flying fadoodle about my looks. And gained some confidence.
Now, I dream of being a model. I want to be THAT girl that changes the way a model should look. And I mean I somewhat have the face and have a great rack. And then there’s the chair.
Oh how could I forget. There’s no possible way a girl in a wheelchair can become a model. How ABSURD, am I right?
Not. Fuck the rules. Fuck the status quo. And fuck the next person that tells me NO (for a stupid reason of course. I take constructive criticism well).
I don’t mean to sound vein or anything. Everybody has dreams. This is mine.
My dream is to become a model, since I sure as hell can’t act. Being a model is pretty much acting without talking. Which I can do. Anyways. I want to become that iconic person that changes the way the world looks at people with disabilities. People with disabilities always feel like they cannot do something because of the automatic assumption that their wheelchair is the answer. That their wheelchair makes them not as accepted. Blahblahblah
All a wheelchair does is make a person stand out more, in a good way. Most of the time, that person has the best things to say and deserves to stand out. And people don’t see that.
I want people with disabilities to realize the potential they have. I want you all to see that people with disabilities have an equal chance of becoming whatever they want to be.
Well, world, that’s what I’m here for.
And I want you all to listen. And listen well.

My disability does not define me. I define IT. So don’t look at my chair and judge me. I’d rather you look at my cleavage if that’s the case. Nothing is wrong with my brain and I thank god for that everyday. I just hope you all can see that too.

thanks for reading (:

20140403-173122.jpg