Suffer or Survive?

It's been a very long time since I've written and I sincerely apologize.
Grad school is very demanding of my time and when I'm not doing that I'm in sweat pants watching my future husband (Dr. Spencer Reid) in criminal minds on netflix.

So much has happened since I wrote last, how about we recap the last month (if I can remember)!


There was Disney with Heather and Easton where we dressed as star wars characters and had a blast!
Then Halloween where I went to see an awesome circus show here on campus and hangout with awesome friends.
School, School, and more School.

But then...things got serious.

A man who needed help mentally and emotionally came and intruded on my school.
You all know the story, so I'm not going to recap or give my opinion of the matter.
I'm just going to say that he needed help and we need to raise awareness on mental health issues and the resources available to those who need it. They are out there and nobody should feel ashamed of wanting to talk to someone about how they feel.

That was the week before thanksgiving, so I was thankful for a break away from school (for the most part).

Thanksgiving was weird this year without papa and meeme. It was hard, but we survived just like we have the past 7 months.

But NOW it's time for Christmas and I can blast the music as loud as I want!
Break is just around the corner and I can almost smell the mistletoe I won't be kissed under!
I know it's going to be hard and sad and difficult, but it's Christmas and it's the best time of the year.

We will survive.
We will not suffer.

Everyone is given a choice. It's simple.
Do you want to suffer or do you want to survive?

With grad school, with the shooting, with the heartache of missing someone, with the pain of dealing with a disease....
Suffer or Survive?

The power is with YOU.

Yeah, I'm in pain nearly every day of my life....
but I'm not going to choose to be miserable every single day.
Can you imagine how exhausting that would be?

I choose to survive and make the best out of the situation.
It's really the smart choice.

Now, I'm not saying that you can't have miserable days.
I have the ALL the time, just ask anyone.
But you have to have more good days than bad.

You have to choose to be a survivor.
It happened, it was horrible, I hated it, I'm so sad, but then what?
You acknowledge it and then what are you going to do about it?
Are you going to choose to be Mr. Grumpy Gills or are you going to move forward and act on what happened.

Grad school sucks, but I love knowing that I'm going to help someone someday.
The shooting was terrible and I'm scared sometimes about it happening again, but I'm going to advocate for mental health issues being discussed and talked about.
My papa and meeme have been gone 7 months now and I miss them more than anything, but they wouldn't want me sad, they would want me living life.
I'm in pain, yes. But I can use that pain to reach others and to push myself to be better.

I'm not suffering. I'm surviving. I'm pushing forward in life because why would you want to constantly be talking about the negative.

Bad things are happening around the world. Bad things are happening in the US. Bad things are happening in the city you are living in.

But good things are happening too.

Dance Marathon, Local charities, guys there are good things in the world that can be talked about too.

I'm tired of hearing about riots and fires in the streets.
Quit acting immature and focusing only on yourself and your suffering.
Instead, think of ways you can move past what is happening in order to better yourself.

It's Christmas time.
So please, let's talk about the good that's taking place in this world and take a break from all the negativity.

Stop suffering for once and let's be survivors and overcome the difficult things in our lives.
The choice is yours, you just have to pick sides.



Not to completely switch gears, because the people that I'm helping are surviving and battling diseases ever single day, but I just want to give a shout out to all those who have helped me work towards my goal for dance marathon. I know firsthand some of the things these kids are experiencing and while I was never as sick as some of them are, I do know that Children's Miracle network is an amazing thing that helps each and every kid out there. I've been one of those kids, I've worked for them before, and I plan to continue to help them in the future. I'm 40 dollars away from my goal, but I'm going to continue doing my #DMdares until DM in February. So, If you have any dares, just post them to my facebook or email me or text me, then donate a small amount (5/10 bucks is all) and then watch and laugh your butt off while I perform the dare! It's for an awesome cause and you get a laugh out of it. So hit me up! Check out a few of the dares I've done on my facebook page and here is the link for my DM information.

http://noles4kids.kintera.org/karadingess



Have a wonderful Holiday Season and a Merry Christmas :)

Normal...what's that even mean?

If you've kept up with the blog, then you know I'm getting my masters in counseling.
Well I was reading articles and case studies and you know...doing the whole grad school student thing when I came across something about a professor normalizing one of his students with a disability and it kind of set off a little spark in my head.

Now this is a hot topic in education today.

I'm not here to say what's right and what's wrong.

There certainly can be benefits for putting students with disabilities in regular classrooms (depending on the disability) and there can be faults to that.

Once again, I'm not here to say what's right and wrong, nor am I here to talk about education.

What ticked me off was that the professor who is supposed to cater to the student's disability was sitting there ignoring it....not not ignoring it...downright against it. The professor wanted the student to act "normal".

Now...I've wanted to be normal my whole life.
But what is normal, because normal means something different to everyone.
But.....
Normal for me is playing whatever sport you want to play and still being in no pain the next day. Normal is not taking 12 pills and a shot just to survive.
Normal is not having to get labs once every 2 weeks to make sure your liver isn't failing.
Normal is not having a disability.

In this case, the professor is normalizing the student, therefore she doesn't want to be normal anymore.

Does society not do this on a daily basis?

You have to be normal or you get made fun of.

You have to act just like the others or else you'll never fit in.

What's wrong with this picture?
Everything.

This student who needs the benefits to help her in life is not able to get them because society/the professor/average joe wants her to be normal.

How do we fix this?
How do we stop normalizing the stigma of a disability?
How do we demolish the idea that being normal is something that we should strive to be?

Go read my Accept Adaptation Post and you'll get an idea :)

We should be extraordinary with or without a disability.
We should want to be the best version of ourselves that we can be.

That professor was wrong.
Anybody who wishes normality on anyone is wrong.

See, I'm stubborn in the way that, let's take this example, that if I was forced to be normal...I wouldn't want to be it anymore.

In fact, I would downright ignore the person and be myself.

If you force something on someone, they aren't going to have a positive reaction to it.

Let the student have extra time on her test.
Let the kid stand up from time to time so his legs don't ache.
Let those who have wanted their whole lives to be normal, realize how uneventful it really is.

It's not hurting you in anyway, so why not?

While I've wanted to be normal my whole life, I've come to learn that nobody is ever really normal anyway.

And that's what's so great about it.

In the wise words of Grandma Aggie Cromwell from Halloweentown...

Life's Tough, Get a Helmet

I must apologize for my extended absence, life has been getting in the way of everything these days.
Actually, school has been getting in the way of everything these days.
Don't get me wrong, I love it....
It's just slowly chipping away at my sanity which is really great because I'm the one who's supposed to be sane helping those in my position.

Life is funny like that.

It's also not fair.

But then again we were taught that at a young age right along with the "Because I said so" line.

We had to do a little assignment in my first semester of graduate school about what are top 5 dream jobs would be if we didn't have anything holding us back or in the way.

Well, here are mine:
CEO of Disney (because we all know I would rock that job)
A Professional Lego Builder (have you seen my collection?!)
An Author (that's what happens when you grow up the librarian's granddaughter)
A tour manager (cough cough Taylor Swift I'm free whenever)
The Doctor's Companion (We all know that's a hard job, for those of you who don't know what this is, it's a doctor who thing)

Thing is, I could probably try for one or two on that list...

But the majority of those aren't stable enough for my reality.

I need insurance, I need to make enough to pay for my medicine and doctors appointments, and I need a job that is flexible for when I flare.

Life is not fair for a lot of people.

But when you're diagnosed at 6 years old, that isn't the first thing that pops into your head.
As a matter of fact, that thought didn't pop into my head until I wasn't able to play the sports that I loved.

Yes I'm stressed and going crazy, but my point isn't to sit here and bring up all the negatives in my life or to make you think about the negatives in yours.

It's to make you think a different way.

For those who love Cory and Topanga and who have seen every episode of Boy Meets World, like me, then you'll understand this.




Eric is telling his little brother that he needs to get used to the fact that life is gonna suck sometimes, he's telling him to get thicker skin, to get a helmet.

Well, yeah, that's true...but I like his helmet idea (at this point you're thinking I've jumped off the deep end, but I promise you as a counselor, I've declared myself mentally stable).

Get a helmet. Protect yourself.
Now you're saying "Kara you told us you take risks"
Yes, I do.
But protect yourself from the negativity.

Yes I need a job that will provide me with a stable income and insurance, thank goodness I found counseling because it's not only something I love but it provides me with just that.

Yes I can't be CEO of Disney, but I can go whenever I want.

Yes I can't be Taylor Swift's Tour manager, but I can still be her biggest fan (her album drops 2 weeks from today)

Yes I might be in pain, but at least I'm feeling something.

Yes I may never get to be on the Ellen show to talk about my new book or how the doctor saved the world again, but I can sure as heck still dance with her while she's on tv.

When the "tough skin" helmet doesn't work, get a new one.
Try the "positivity helmet" or the "friends"helmet or the "netflix" helmet (that's my favorite).

See my point is to find a different outlook on things because life isn't fair and it's not going to change.

If I had wasted my time years ago thinking how doomed I was that I had this disability, then how depressed would I be today.

You have to focus on what you do have, what you can accomplish, and how far you've come.

I remind myself of those things when I'm having a crappy day.

I'm lucky enough to have 12 different helmets of all shapes, sizes, and strengths that help me walk and move around every single day.

In fact, tonight is shot night.

Life isn't fair, but it gives us little things along the way to help protect us and give us the strength to get through those rough days.

The next time you think the phrase "life isn't fair", I want you to think of things that you have that other's don't.

Most people call this counting their blessings, but Eric Matthews is just reminding you to put on a helmet.


Disclaimer Note: While I have declared myself mentally stable, I am not a licensed counselor and this idea of helmets and blessings have nothing to do with the ABC or Disney broadcasting companies. Although one day when I'm CEO, that might change....
:)

Accept Adaptation

Acceptance: favorable reception or approval
Adapt: to change (something) so that it functions better or is better suited for a purpose

As most of you know, i'm in a mental health counseling program. There are a lot of times where people talk about accepting things and moving on and whatnot when it comes to whatever they happen to be struggling with at the time.

Well, acceptance is a big thing when it comes to disability.
Most of us are told we need to just accept the fact that we have a disability and once we do, that life will then become easier.

That's not always true.

When you accept something, you are approving that it happens.

Well, I don't really approve of having a disability, but there's really nothing that I can do to change that.

So what now? Do I just accept that fact and move on?

No.

Another big thing that is starting to show up in the research is the term adaptation.
Now one guy who has a disability says that we don't need to accept it, we need to adapt to it.

I kind of agree, but see at first glance, he's saying we need to adapt to the disability.

Well, I don't like that idea because it's basically saying that I need to change myself for the disability.

I'm not about to do that, I'm too stubborn to give into something and let it have it's way.

So because I'm a world famous psychologist and I have tons of literature and research studies published, I came up with the idea that we need to accept adaptation.

Now, I'm not saying that we need to approve of us changing.
No.
I'm saying that we need to accept that something (See above underlined and bold word) needs to change so that it functions better.

Accepting adaptation.

I don't like the idea that my disease overrules me sometimes. I'm not going to accept that. I'm not going to adapt to that. I'm going to accept the fact that it needs to change.

The disease and disability needs to adapt to us.

Now, I understand that you're probably thinking "this girl is crazy if she thinks that a disease can adapt to a person".

And yeah, I'm a bit looney (you can thank grad school for that).

No, I'm saying that society needs to change it's ideas of disabilities, fund raising needs to be going to research for disabilities and to better help those who need it, and things need to be happening to raise awareness of those with disabilities.

I'm tired of hearing stories and talking to people who have no one to turn to because nobody understands them.

I'm tired of bullies picking on kids because they look different or walk different.

I'm tired of having to fight this disease when nobody knows about the war.

I'm not going to adapt or accept.
I'm going to accept that the stigma and disability needs to adapt to me.

One of my favorite quotes is, "Acceptance is not giving up, it’s choosing to live beyond the things you cannot change, it’s choosing to recognize the pain and live anyways".

By recognizing that "yeah, this is going on, but I'm gonna push through it and go about my life" is wonderful and amazing because you are being stronger than your disability.

Let's all recognize the pain that happens in the lives of those with chronic illnesses.
But, let's all change the way we think about it.

Anything Men can do, a woman with a disability can do better!

There's a lot going on in the media today about Feminism. Apparently nobody will listen unless Beyonce has it in bright letters behind her while she twerks on stage, yay Feminisim! Is there something wrong with that statement?
Yes.
But that's not the reason I'm talking about it today.
I've always thought that I'm somewhat of a feminist, I mean which woman born in this century isn't?
Don't answer that question because yes, I realize there are some ladies who disagree.
I'm not a hardcore not shave my legs no bra type of feminist.
I'm the type who wants to be treated the same as men. I want to be given the same opportunities that men get, equal pay, and to be seen not as an object, but as a person.




Now, I'll be the first to admit that a guy should be respectful and open doors and offer to pay and whatnot.
Does that mean I'm a hypocrite?
No, because I'm going to offer to pay, open a door if he's close to me, and everything else.
Once again, this is not why I'm talking about this, I just wanted to go ahead and get my thoughts and opinions out of the way before I actually get to the real stuff.

So, everyone knows about the glass ceiling for women and how they have to jump all the obstacles that society puts in front of them.
But what about a woman with a disability?
In the eyes of society, she's twice as disqualified as a man is, is she not?
Not only is she seen as weak and incompetent, but now she has a disability that makes her useless.
Please realize that these are not my views, we all know I am both a woman and have a disability! :)
It's just something that people don't realize when they think of feminism or glass ceilings.
They think of the regular able-bodied woman who is able to do everything a man can do...if not better.
But what about the disabled woman (who in my case can do everything a man can do...if not better) who has limitations with what she can and can't do? Why aren't we thinking about her? Why aren't we empowering her?

How do we empower her, you ask?
The same way we empower women as a whole.
Granted, us regular people don't need bright signs or twerking bodies to do so.
We need to bring awareness to the issue.
We need to shine the bright light that is the American's Disability Act, as well as showing that she is a strong woman despite her disability.

Next time you are feeling the girl power and think about how badly and unfairly women are treated in society, not only here...but around the world...think about disabled women.

If you think you are seen as weak, imagine how they feel.

Slow your roll

My break this summer was 2.5 weeks.
Technically it was like 3, but I had to be back early for school stuff (go figure).

During my break I went to California, had my 23rd birthday, hit up every single doctor I have, and then I got sick.

This is something that happens a lot to me because:
1. I have a next to nothing immune system annnnddd
2. I have what's called the Cawthon Luck, it runs in the family.

Over my so called break, I didn't slow down until I got sick.
This is normally how my body forces me to slow down, so I wasn't that surprised when I woke up a week ago with a sore throat.

I'm still congested.

Now, a normal regular human being wouldn't have to schedule every single doctor appointment in one week because they don't have that many doctors...they wouldn't have a cold (yes, a cold) for much longer than maybe 3 days...and they wouldn't have to be forced to slow down by their body.

But, as well all know...I'm not normal and I'm totally ok with that!

In order for me to rest, because I'm me and I don't have time to slow down (there are things to do and people to seeeee!!), my body will either stress itself out so much that it just stops working (a flareup) or I'll catch any little things that is floating around (I think I caught it from a 6 year old coughing 3 seats down from me on the plane).

I'm used to this, but it still sucks knowing that it could happen at any moment.
I'm supposed to take care of myself and get enough rest and eat healthy and blah blah blah...
Hahahahaha! I maybe do like one of those.

If you have an autoimmune disease, you know how easy it is to catch things.
There is literally no way to avoid it.
However, this year my roommate got the flu and I was out of the house within 15 minutes of her finding out...
I never got it.
That is NOT the Cawthon luck.
I don't know how I didn't get sick, but by golly it didn't happen.

Let me explain to you what happens when my body doesn't slow down.
You already know about the flareups (if not, go back a few posts and you'll see).

Your version of sick:


My version of sick:




No, I'm kidding...kind of!
For a person with no immune system, getting something as small as a cold makes them feel like they just got run over by a monster truck, hit in the head by a baseball bat, and then thrown into a freezing pool.

That's why if someone is sick, I try and stay away. Not because I don't want to be around them, but because my body is having a hard time trying to not kill itself, that it doesn't need to try and kill other germs.

I still love you guys though!

What's really funny, and I say this all the time, but I would rather have a flareup than have a cold.

I know, I know.
Why would you want to be stuck in bed unable to move instead of having a cold.
Well, because I know how to deal with that kind of pain.

I know that If I position my body a certain way, I can ummm, make it hurt less, well at least temporarily until the pain pill takes over.
With a cold...you can't breathe, can't sleep, can't numb it with a pain killer.
See my point?

I can't really avoid getting sick, but I can help prevent it.
I can slow my roll, stay away from those who I know are sick, and I can become a healthier human being by taking care of myself.

You can do all of these things tooo, it's not just for those who have a picket fence of an immune system instead of the great wall of china type.

So Slow your roll and don't stress about the things you can't control.
It will help your body out as well as your mind.


Disclaimer Note: I'm not a hypocrite, however while I know what you should do...that doesn't mean I'll always do it. You know good and well how hard it is to slow down when you're going 100 miles per hour a day. But, that doesn't mean we shouldn't try :) Here's to slowing our rolls together!!

22

I don't know about you, But I'm certainly not 22.

So yesterday was my 23rd birthday and it was just what I needed.
I was surrounded by a few friends and close family.
It was a perfect doctor who themed party followed by a great afternoon with quality time with just my brother. I needed that too.

I've never been one to dwell on getting older, nor have I ever been one to want to stay a certain age forever.

I mean, I'm pretty awesome in that I'm 23, I look like I'm still under 21 because they card me everywhere I go, I have the liver of an alcoholic (the one who doesn't really drink gets the bad liver), annnndddd I have the brittle bones of an 86 year old.

I literally have the best of every world there is! :)

Still, I found myself this morning when I woke up hating the fact that I was 23.

It's not an even number.
I don't have a really good catchy song to go along with it (nobody likes Blink 182's "what's my age again")
       "Nobody likes you when you're 23"....no Blink 182...nobody likes you...
And I just don't like the way it sounds.

While I may not like the number 23, I'm going to like this year.

22 was the best and worst year of my life so far.

I moved to Tallahassee.
I met wonderful people who have taught me so many things about respect, diversity, and friendship.
I got to travel to LA with my grandmother.
I went to football games and concerts.
I was able to start research and earn respect from professors that I want to work with.
I kept a stellar GPA when my world was crashing down around me.
I got to spend the last year with the ones I loved before they were gone.

I have to say that yesterday was harder than I expected it to be.
I'd be lying if I said I didn't cry yesterday because Meeme and Papa's names weren't signed on my card, or that I didn't get to eat a burger or steak grilled by the master chef himself, or that I didn't get to see Brandy coming toward me with that silly dog smile on her face.
I cried.
And it'll be a while before we stop.

Being 22 taught me that no matter what, family and friends will always be there for you.
It taught me to push through when you don't think you can.
And it taught me that no matter what I do, the ones I lost will be proud of me.

If you noticed I didn't name the bad things that happened to me this year.
There's no need to sit and list them because being 22 is over. It's time to begin at 23.

So this year...
I will be the best me I can be.
I will make mistakes because I'm young and I can.
I will make Them proud.
I will cry because I miss them.
I will make memories because I never know when the last time I get to see somebody is.
I will take care of my body (yeaahhh, this one is gonna take some work lol!)
I'm going to get into a Ph.D program because I want to.

There are so many things that I'm going to strive for this year because I never know what's going to happen next.
Like I said, 22 was the best and worst year and there were points where I didn't think it could get worse and times where I didn't think it could get any better.

But it can always get worse and it can always get better.
It just depends on how you look at what's facing you.

I was and I am "happy, free, confused, and lonely at the same time".
It was and still "miserable and magical".

Nothing has changed. Or has everything changed?
(side note: everything has changed is a Taylor Swift and Ed Sheeran song, sorry I had to lol)

And 23 might have health scares, deaths, wonderful grades, a doctoral program, and so much more.

So bring it on, 23, bring it on.


Did you really think that I would talk about being 22 and not have Taylor lyrics in it?!
I really hope by now, that you guys know me :)

Who am I? I am...

Everyone goes through some sort of time in there life when they are trying to figure out who they are and who they want to be. Luckily for me, I've never had trouble knowing the answer to either of those questions.

Who am I?
Well I'm Kara, of course!
No, really...
I am:
A daughter who does her best to make her parents proud of her
A sister to 3 younger brothers and 2 cousins who think of me like their sister
A fighter when it comes to something that means a lot to me
A friend who will go above and beyond to do something for the people I love
An optimist (for the most part, however lately it hasn't been so true)
A believer (happily ever afters DO exist, just like hogwarts and unicorns)
A Dreamer (the things that happen inside my brain would crack you up)
A helper (why else would I be in the field I'm in?)
A Disney freak, a whovian, a marvel superhero in training, and a potterhead (aka a nerd)
I'm the goody-goody, the people pleaser, the no-conflict-please girl
I love movies (I have a pretty awesome collection)
I could get lost in the lyrics to songs and fall in between the lines of books
I'm an athlete and sports enthusiast.
I am a person with a disability

There are probably that could go here but notice that last one.
It came last.
I am a person with a disability. It's a part of who I am, but it does not define who I am. While these were not in any order, this was how I thought about them as I was writing this. All of these things make up who I am a as a person, but no one thing defines me. I don't introduce myself, " Hi, I'm kara I believe in magical things and I have a chronic illness"

That person would think that I'm psycho...and I am just a little...but that's not the point. I don't want people remembering me for how many pills I take a day (13 if you wanted to know) or for how many doctors appointments I have in one month. I want people to know me for my character, for how responsible I am, or for how much I love everyone around me.

That's who I am.

Now for the second question Who do I want to be...
Well, I already kind of answered that for you above, but I'll elaborate a bit more.

I want to help others. I want to show them the magical wonderful world I believe in, when sadness is all around them. I want to show them that they can believe in themselves, as much as I believe in them. I want to be the type of person, like my papa, that was remembered for the smiles he brought to peoples faces, for the joy he brought into others lives, and for the help he gave them. That's who I want to be. If I can change the way someone thinks or feels about something, if I can help them get through even the smallest of problems, if I can make them smile when they want to cry, then I will know that every pain, every heartache, and every tear went toward something that could possible change someone in some way.

That's who I want to be.

If you sit down and look at your life and think about who you are and who you want to be, what do you see? Are you that person? It's not too late to start trying.

With all the negativity in my life lately and just bad things happening in general, it's nice to remind myself of my goals and ideas of what I want.

I encourage you to do the same.

Don't let something as simple as a chronic illness (yes, I did say simple there) define who you are or who you want to be.

You get to choose, now all you have to do is make that change.

You asked, I'm telling!

So a few weeks ago I decided to try something new and basically have ya'll ask me questions about things you were interested in and I would answer them honestly. I got a lot of great questions and below I'll have them and their answers listed :)

If you didn't get to ask me your question, still send it to me and in a few weeks I'll do another one of these and I'll answer it then.

Disclaimer note: I am being 100% honest with my answers. Some of these questions are tricky for me to answer and it's easier for me to type out my response behind a computer than it is if you asked the question to me face to face. Basically, some of these answers wouldn't have been given had I not started a blog due to the emotions behind them. I'm not a super emotional person, but the answers are personal. So please respect that and know that I'm answering them in hopes that others can relate and it helps them overcome/accept/adapt to whatever they are experiencing in terms of their disease.

Here we go!!!

1. Why haven't you been writing a lot lately?
    Well, I haven't been writing lately because of my schedule. I love to write and I try my best to write when I can, however my school schedule lately has been insane. I do promise to write more in the future!
    
2. Because of your arthritis, do you experience any travel pain?
     Yes and No! I always get stiff when I'm travelling, especially long distances. However, it's not really pain. There are tricks I do to keep me from being in really bad pain. Some of those include stretching on long car rides or plane rides, sitting on the outside seat so I can get up easier, and then just making sure to move every few minutes so my joints don't lock up.

3. What would help people with disabilities, or what's something that you've found that helps you?
   That's a very broad question, but to answer it I would have to say patience and respect. My grandmother always taught us to follow the golden rule: Do unto others as you would have them do unto you. I want to be respected and in the case that I'm flaring, I would like others to be patient with me. That's something that can relate to anything and anyone.

4. I've heard you mention that you don't want kids, why is that? Is it related to your chronic illness?
   Well this is a tough question for me to answer and one that does get asked a lot. I still haven't made up my mind about this one. I'm not a kid friendly person (YES there are a lot of kids that I do like because they are raised well and are trained to behave and YES I do want to work with kids one day as far as counseling goes). However, I haven't decided if I want to spend 24/7 with a kid for 18 years yet or not. But to answer your question, the thought process behind it is that yes it's because I have arthritis. It's not only because there is a really big chance that they could get this disease and I don't want them to have to go through what I had to go through, but it's also because I don't want them to see what might happen to me one day. It's one thing for the mom to have to take care of the kid, it's another for the kid to have to take care of the mom because she might not be able to use her hands one day. My mind is not made up and whatever happens one day will happen, but for right now....I'm still on the fence.

5. You don't like being touched, why?
   Hahahaha! This one is a great question. I'm not a touchy person, I'm not a "group hug" person, and I'm not a go out of my way to have body contact type of person. I don't really know why, it's just not my thing! Don't get me wrong, there are moments in which I am nice and will hug you or like be a sweet comforting person, but it's rare. It may stem from the fact that when I flare, I hate to be touched. You can lay by me, you can play with my hair, you can even talk about touching me....but don't touch me when I'm hurting. I might hit you, which would hurt me more than it would you, but you get my point.

6. What's the daily level of pain you experience? Basically, are you in pain every day?
      This is a tough/complicated question for both me and you. Its tough for me to answer this because it changes. There's no set answer. It's tough for you to hear it because there is a certain level of pain daily. I hate the pain scale for this reason. Now pain to you and pain to me are different. I have a very high pain tolerance so what you might thing hurts, may just be a tiny little blip on my radar. But just like hulk who's secret is that he's always angry, my secret is that there's always something bothering me pain wise. So to answer your question, the daily level on my good days would be that my right knee throbs. So imagine like a finger tapping constantly on one of the weakest areas of your body, that's the best way I can describe it. Is it painful? To me no...it's just really aggravating, but to you it might be like a 1 or 2 on the pain scale. On my bad days, well think of the tin man who hasn't been oiled in years, or day 2 after you did a full body workout and fell down the stairs.

7. What's one of the toughest moments you've had concerning your chronic illness?
     Another tough question, wow you guys are good. Well this one is hard because there are a few that stand out, and I really don't have that many. I could say it was the moment they thought I might have cancer, I could say it was one of the times I was laying in bed and didn't know if I was going to be able to move...or I could say this one...there was a time like a year and a half ago in which we thought my little 6 year old cousin might have what I have. She might one day, but for right now she doesn't. But the toughest moment was when I thought that I would have to tell her about the things she was going to experience, about what her life would be like now, and that I would have to tell her about pain when she didn't even know what pain meant yet. If you can imagine a movie where everything flashes before the characters eyes, this was it. I hated it. That was one of the toughest moments so far and one that I'm thankful never actually happened.

8. If you could, would you trade your life for one without pain and a chronic illness?
   This is actually one of the easiest questions yet hahaha! The answer is no and this is a common question most people with disabilities get and one that we will all answer the same. I wouldn't trade anything because it's made me into the person that I am today. While I am not my disability, it has given me the experiences that shaped who I am as a person. And I wouldn't trade any of those experiences.

9. What's one of the most rewarding experiences you've had related to your disease?
    Every year I go to kid's arthritis camp. Seeing the kids and hearing them talk about their experiences just make me want to be a better person and help others get through their disabilities. Seeing kids do something that most adults can't do, well that's just rewarding and inspiring in itself.

10. Is there an exercise you've found that helps you?
       This is a funny question. For me when it comes to working out, if I'm not going hard and breaking a sweat...then it's not worth it to me. Normally this means that I won't be able to move the next day, but that's when I know I've done something. For me, these exercises are the worst things that someone with arthritis can do. For example, I like to run and lift weights. Now the doctors will tell you to walk, swim, and do yoga. If you like those things, then do them! If you're like me, then that's ok too...just don't complain about being in pain the next day. YOU have to decide what's worth it.

11. Do you ever get angry that you have what you have?
       Does Jimmy buffet like Margaritas? Hahaha! Sorry about that. But to answer your question, yes of course I do! Everybody has their moments and I get angry all the time. That's normally what makes me break down actually. I'll get so angry that I just cry. It's normal, I promise.

12. Why did you decide to write about it?
      I've always always always wanted to write about my experiences and what it's like to be a kid then teen then young adult (yes 22 still counts as a young adult) with arthritis. Maybe one day I'll be the next Mindy Kaling/Jess from New girl/ Tina Fey with a chronic illness of course who writes a book about her life and it becomes a best seller and then it gets turned into a tv show! Can you imagine if Jess from New girl had arthritis and an obsession with disney....THAT would be a funny show ;)

13. You mentioned that you like pushing your boundaries, if you know that is going to cause you pain, why do you do it?
     Because if you don't push your boundaries to see how far you can go, then why live at all? If you can't have fun, make yourself a better person, or at least see how far you can go doing something, then is life really worth living? I want to look back and say, "man I had fun doing that, it was totally worth not being able to walk the next day" because one day...I won't be able to do those things. Why not enjoy them now?

14. Do you get aggravated that people take the things that you have trouble doing for granted?
      If I'm flaring, then yes. But If it's just a regular day, then no because sometimes I even take them for granted myself. You can't constantly blame others for something you find yourself doing.

15. What's one thing you would tell someone who is just being diagnosed with arthritis?
       Just one thing?! I guess I would say that life will be tough, but you just have to know that you are capable of surviving and beating the obstacles put in your way and that there are others just like you who are experiencing those things, so you aren't alone.

16. Have you ever lost your faith because of the things you've gone through?
    My faith is tested every single day. Is it the strongest it's been right now? No. Have I ever lost it? No. Will I ever lose it? No. Like I said, it's been tested and it will continue to be tested, but I don't see myself ever losing my faith because of something. I have to have something to believe in, something to look forward to one day, and something to keep me going.

17. Are you in the counseling field because you want to help others with chronic illnesses? 
     YES!! That's actually exactly what I want to do. More specifically, I would like to help children with chronic illnesses in an inpatient hospital setting.

18. Is there anything that you would change about yourself right now?
      I would love to be skinnier, but isn't that something that everybody wants? Ummm...no I wouldn't change anything about myself right now. My health seems to be cooperating (knock on wood) and things seem to be going alright, so no I wouldn't change a things.

19. Have you ever had a bad experience/someone not believing you or someone bullying you because of your disease?
    I've never been bullied, but I did have 2 instances in which others didn't believe me. Both were in high school and the first was when a friend of my then-boyfriend's came up to me and said, "why were you out of school for 3 months, did just think you were too good for school because I don't believe you were sick" and then the other was when we had a fill in coach for our 7th period basketball class and he told us to do push-ups, but I told him I wasn't going to do them because it hurt me. He yelled at me and told me to do them anyway, I instead went into the locker room and didn't come back out. Both of those times I kept my cool on the outside while exploding on the inside. I don't get mad often, but things like that almost make me go crazy hahaha!

20. If you could go back and give your younger self a piece of advice, what would that be?
    I would tell my younger self to not stop playing sports. I wish I would have pushed myself to play instead of giving up. I mean, It was something I had to seriously think about and I don't regret my decision, I just wish I would have thought more about it. Looking back now, I think I could have played through the pain. Is that true? I'll never know. But for right now, that's the only piece of advice that I have.



Well now that we've played 20 questions and you know more about me than you ever wanted to know, I hope you keep reading, sharing this, and looking forward to my next post! I really hope I answered your questions and if not, shoot me a message! Until next time guys, ya'll have fun!!! :)

It's a bird...It's a plane....it's...nope, it's just kara

My weekend was amazing, tiring, wonderful, exhausting, overwhelming, emotional, and just so worth every minute that I was there.

If you are just tuning in, this past weekend I was a counselor for Kid's Arthritis Camp.
This was my 3rd year doing it, 4 total if you count the year I was a camper.

Kid's arthritis camp is a place where kids who have been diagnosed with autoimmune disorders can come and hangout with other kids just like them.

It's a place where they can go to just be kids.

This year we had kids as young as 7 and as old as 14 come and camp out with us for the weekend and do you know what the theme was?!?!

My second favorite thing (right behind Disney, of course)...SUPERHEROS!!!

So, in grand Kara Fashion, I dressed up like spider-man for the dance we had on Friday night.

Not like a tee and shorts.
A Full body spider-man suit with my blue chucks to go along with it.

I'm that awesome.

But these kids are twice as awesome as I am.

Let's break it down and you'll see.

There are people out there who are born special. They are born with the abilities to do things that other, ordinary people cannot do and cannot withstand. They are born with powers that help them, hurt them, heal them, and make them into the people that they are meant to be. They can handle pain that others cannot, whether that be mental, physical, or emotional. They are discriminated against, hated, feared, ignored, and misunderstood. They are scared, brave, humble, angry, and confused. These people are feared because society doesn't understand them, nor do they make the efforts to. They are waiting patiently for their time to shine. Some you are afraid of because they are different. Others blend in because it's easier than standing out. They can change your minds, make you see things from their point of view, and they will always fight for what they believe is right.

You probably read that and immediately thought of X-men.
You would be right. That fits the description of mutants to a T.
However, I'm also describing people who live with a chronic illness.
Go back and read it again and think about kids who have a chronic illness.
It makes you think, doesn't it?

You'll meet people who you are terrified of talking to because you don't know how to act around them and you'll treat them like Senator Kelly treated the mutants. You'll want to change them. Little do you know, that it's you that will be changed just by talking to them and getting to know them.

These kids that I meet at camp have the power to do whatever they want and not let their disability get in the way of it. They will break your heart and put it back together by opening your eyes to see just what it's like being a kid who doesn't know if they'll be able to walk one day.

If you ask me, that's a superpower.

The kids at camp this weekend are superheros and I really hope that they left this weekend truly believing that.

You ask, I Tell

I know I've been busy a lot lately and haven't taken the time to sit down and write something for ya'll.

For that, I apologize.

However, because my blog has now been looked at over 5,000 times (THANK YOU!!!) I feel it's time for me to put the ball in your court.

No, this is not because I'm out of ideas to talk about because I literally have a sticky note on my computer filled with ideas.

This is because sometimes it's assumed that those with chronic illnesses don't like to be questioned or approached about their disease.

Now, I can't speak for everyone on this topic...
but I can tell you that I am an open book when it comes to my diseases.

I mean, I have a blog about it...on the world wide web...or chrome...or internet explorer....whatever it's called these days.

Most people would rather be questioned (genuinely not like a rude question or anything) than they would be stared at.

I think those that wonder, should ask. But they don't.
Why, you ask?
Because they are scared, think they might be rude, think that the person doesn't want to answer or might be tired of answering questions, or they might be afraid of the answers they might hear.

But, now's your chance.
Ask me whatever you want to ask me (disclaimer note: I will answer truthfully, even if it means I don't have an answer, I'll tell you that. Also, be real with your questions...I'm not afraid to answer anything as long as you aren't afraid to ask it).

If you have my number, call or text me...if you don't weeellllll I'm not putting it on here :)
If you have my email, facebook, twitter, instagram, guys I'm literally on almost every social media site...
ask me!
Do it on here by leaving a comment!

Now's your chance :)

Oh and if you have a topic that I haven't talked about, go ahead and shoot that my way too.

Look out for my next blog post, it'll have all the questions that have been asked and it'll have the answers.
NO NAMES INCLUDED, that way you don't get embarrassed or something.

So everybody has like 2 weeks.
Ready.....
Set.....
You ask, I tell :)

What to do/not to do when Kara is flaring

I like to think I'm a pretty easy going and nice person.
It takes a lot to get me angry and if you've read any of my blog posts before you know I'm a pretty positive and happy person.

Well, I have my good days and bad days just like everyone else.

Most of the time though, my bad days are caused by a flare up (if you're just now starting to read, go back a few posts and you can read the details of what this is) and not something anybody did.

Please don't think you did something to tick me off (you didn't) yesterday, I was flaring and I couldn't not come to school because of it.

Let me explain what was going through my mind yesterday...

I was sick earlier in the week and that turned into a flare which started on Tuesday and then by Thursday it had reached it full potential and the poor people in my classes/groups had to put up with me.

So I get a temper when I'm flaring and once again this is not caused by anyone.
I can't speak for everyone who has a chronic illness, but most of my frustration and anger comes from within. Basically, I'm mad at myself.

Why are you mad? You ask.

Well, I'm mad because not only can I not put on the lid to my tumblr, but I can't pick it up with one hand, I can't tie my shoes therefor I have to pretend to be in middle school again where I just put my feet on the laces and pray that my foot doesn't slide out of them as I walk, I could barely put on my bra, let alone my shirt, then putting on my backpack was difficult because I can't bend my elbow, forget doing my hair and makeup....and that's just all before I'm out the door.

Then I have to open my car door, drive to class with limited mobility in my wrists, sit through class for nearly 6 hours, listen to a professor talk about something that you can't even remember because you're trying to hold back tears because you're back is hurting so bad and you just want to SCREAM.

So you have all of this going on but this is nothing to what the little voice inside my head is telling me. Taunting me to give up and give in and just go home. But no, you have to prove yourself wrong. You have to prove that you can make it through the day, you can sit there and smile and laugh with your friends because you know it makes you feel better....and it does!

Side note: Humor helps! Make me laugh, always make me laugh and I guarantee it'll help. Not just me either, it helps anyone who is in pain. Pinky Promise.

Anyway, so you've got all the physical stuff going on and all the mental stuff trying to psych you out all while trying to pay attention in class and participate in group activities when all you want to do is tell yourself to just




And you can't.

So you sit there in your own little world just thinking about it all and trying to pass the time till you can make it back to your sweats, bed, and pain pills again.

Like I said earlier, I'm normally a pretty happy person and will talk to people pretty much all the time.
When I'm flaring, I'm quiet and I will go off alone or just look like crap basically.

It's better this way because I don't want to lose my temper and go all hulk on someone.
It's happened.
It's not pretty.

But that's not me, it's the pain and my point in disclosing this information to you is because it helps you better understand that if you interact with a person who has a chronic illness and they are in pain and say mean things or don't talk to you....don't take it personally. They don't mean it (ok, they might...I don't know the person...but in my case...I don't mean it).

Try and make them laugh.
That always always always helps me.

Just remember how you are on your bad days and how you would want to be treated.
And if all else fails, just ask the person if there is anything that you can do to help.

Side note #2: Don't get offended if the answer is no. In my experiences, sadly, there is nothing you can do to help with the pain or help me out (other than making me laugh!). That's just the perks of having RA. It happens and it's something my friends and family have a hard time dealing with because they want to help, but they can't.

Just ask though. It's always appreciated and thoughtful when you do.

While I mentioned helping and since I'm still flaring so I tend to be more straightforward and honest when I'm hurting....

I'm a very stubborn person and some people who have chronic illnesses can be. I tend to enjoy doing things for myself.

For example: If you see me struggling with (let's use the example from above) my tumblr lid and you want to help me out. It's much more amusing to watch me do it (because I have a chronic illness I can joke about these things hahaha) than it is to help me. I say this because, if I'm flaring, I'm not going to let you help me until I've tried with every ounce of energy that I have...then I will hand it to you without saying a word, you open it, and then give it back. DON'T take it from me or do it for me without me giving it to you or asking me first if I need help.

That's one for sure way to tick me off.
That's a no no.

Basically, when I'm flaring I'm like a 4 year old. (not really, but in terms of describing this situation, I am).

When in doubt, just ask hahaha!
Ask me if I need help (most of the time I'll say no then come to you in 5 minutes)

Laugh about it with me, unless it just freaks you out and if it does then let's talk about it.

Flareups are normal for me and I will always apologize for how quiet and withdrawn I get when I have them, but it's a part of life for me and I just want people to understand that it's nothing personal.

Next time you see me (or someone with a chronic illness) flaring, don't think "oh my gosh I can't talk to her today or I need to avoid him", instead strike up a conversation to get there mind elsewhere.

They will appreciate the effort, thought, and time you took to make us smile...
and so will I :)

& we danced all night to the best song ever

Ok, so not only has it been a while since I've written anything. Buuuutttt it's been a while since I've written anything happy or remotely close to myself. 

So here it goes.

Let me recap this past weekend for you because we all know when Heather comes to town, stuff is going down (totally going to be our hashtag for the next time)

Anyway before heather came I had a wonderful Friday being productive and talking to my former TA about phd programs. 

I love this girl, she's great, and totally helped me out with information.

Side note: I'm 92% sure I want to get my doctorate. 

I would like to work as a psychologist in a children's hospital working with kids with chronic illnesses (go figure) and possibly doing research with them.

Back to the recap. 

She told me one great piece of advice that can apply to any situation: Remember what you're doing it for and why you're doing it. 

I was sold. 

So Friday night I was a lame person and rented redbox movies while doing homework. Little did I know, my Saturday night was going to be a cross between an episode of Girls and the hangover.

Saturday was here and Heather, Liz Lemon, and Gabbie were heading over to hangout before going out. We decided that we were going to do a Lip Sync battle like the ones done on Jimmy Fallon.

If you've never seen Jimmy Fallon's Lip Sync here it is: 

http://youtu.be/wi8G-xCUAjE

Ours was NOTHING like this, however it was pretty awesome and for those of you who have seen the video, you know what I'm talking about ;) (hint hint: I rapped and heather did some 1D)

Then we decided to go out and dance and yes we danced to every single Ke$ha song that Liz wanted to hear! Gabbie some how ended up in the middle of a few dance circles too. 

Well, we met some guys while we were out. 

They played Frozen, 1D, and other Disney songs and Heather and I were in heaven.

Oh, did I forget to mention that one of them was British? The minute we heard his accent we all knew we were in trouble. 

Yes, and he of course, sang the One Direction song for us. 

Then I had my turn of singing an Aladdin song with a guy named Trevor. 

Keep in mind that we are all young twentysomethings and this is how we spend a Saturday night....

singing Disney Duets with guys in the Whataburger parking lot.  

The night ended around 4am when we decided to go home and then started the next morning with Waffle house (where else would we go?!)

My weekend was adventure filled and crazy.

But it's what I needed. 

I would be lying if I said that I wasn't feeling the repercussions this week. 

Sorry guys, but you don't know what it's like trying to put on a bra when your hands don't work.

It's very very tricky. 

Not to mention I have a full schedule, I think I have strep, and mountains of readings I need to do. 

But, I needed that time to let loose and have fun.

Self care. It's all about taking the time to have fun and relax. This can range from netflix (which is my go to) to going out to dance.

If we don't do that, especially people with health issues. If we don't take the time to go dance and enjoy the fact that you can indeed stay up until 4am, then how can you say you lived life to the fullest?

If you don't have those crazy stories and at least wake up with a headache, then how can you enjoy the days when you're lying in bed sick. 

Now, sometimes those crazy stories do make you sick, but you have to realize what's worth it and what's not. 

I know that if I didn't do this occasionally, then the days where I couldn't walk would be extremely hard to get through. 

Balance fun time with relaxing time. Either way though, make sure whatever you're doing is not only for you but make sure that it's worth it. 

3.

3 words.
Three fingers that were held up every single time we left him.
I Love You.

Over the past few weeks my patience, brain, emotions, health, faith, and every part of me has been tested.

But one thing never ceased to amaze me and that one thing was the amount of love that my family has received.

What kind of love, you ask?
Well there are many definitions of love and many ways love can be shown to others.

-Love is when you put other's needs before your own
-Love is when you drive or fly from out of state to be with your best friend because you know she needs you...whether she admits it or not.
-Love is when a church is filled with 803 people over 2 days waiting nearly 2 hours to say just how much your papa meant to them
-Love is sitting there holding hands with your family while they cry
-Love is bringing food over and sitting there to visit just because you don't want them to be alone
-Love is driving out of your way for lunch with your best friend just to talk for 2 hours because you know she just needs you to listen
-Love is going out to have a margarita in honor of papa because you know he wouldn't want us crying over him.
-Love is doing everything in your power to make someone smile
-Love is when you sit there and take the anger without arguing back even though you know they don't mean it.
-Love is showing compassion and strength when others need you to be strong for them

and most importantly

Love is being good to people whether you think they deserve it or not, because being good to people is best thing you can do.

Papa always told me that.

"be good to each other, because one day, the two of you are all you're gonna have left"

Every single time my brother and I would fight he would tell us that.

He wanted us to love each other (not that I don't love my brother already).

I lost 2 really important people within 12 hours of each other. Both my papa and Meeme were wonderful, compassionate, honest, and loving human beings.

If I could be half of the person that each of them were, I would be happy. They were both so proud of us all. One thing that I was so impressed with was how they treated others. They not only treated others with respect, but they saw the best in them. They believed in them and they loved them.

Papa loved his students.
Want to know how I know?
They came to his memorial and visitation.
They wrote him letters about how he thought they would go somewhere in life when others didn't, they signed their safety glasses and put them on the table next to a picture of him, and one student who had just earned his eagle scout pin gave it to my grandmother because papa was the reason he had made it this far.

I'm so honored and proud to call him my grandfather.

Meeme loved all of her grandchildren and was so proud to see them succeed at what they had set their minds to. She loved Pop so much. I remember just seeing them look at each other and joke about how crazy the other one was. That's what 50+ years together will do to you. But boy did he love her right back.

Papa loved mommalane from the first day he saw her, well that's what he told me at least.

To know how much the two of them loved me and how proud they were of me, is just amazing.

They surrounded themselves with people they loved and who loved them in return.
That's what we need to do.
We need to not only be good to one another, but we need to love and support each other.

Papa told me that that's what I needed to do.
Now, I'm challenging you.

I for one couldn't have made it through these last few weeks without my friends or family. I don't know how I made it through exams, classes, driving back and forth every weekend...actually, I do. It was the phone calls and texts from my friends. It was me, knowing that I needed to be strong for my family, and it was knowing that no matter what, I had people who loved me...rooting for me.

I now have two more guardian angels up there in my corner.

This song has been stuck in my head for days (don't laugh at me...yes...it's the friends theme song)

"your mother warned you there'd be days like these. But she didn't tell you when the world has brought you down to your knees and I'll be there for you when the rain starts to pour. I'll be there for you like I've been there before. I'll be there for you, cause you're there for me too."

I pinky promised papa I would love and look out for my brother and cousins no matter what.
I don't break pinky promises.

Every day is a good day...
When you're loving each other and you're there for each other.

Can you pinky promise me that you'll do just that?

It happens to the best of us

Warning: This post and the next post that may follow within a few days won't be like the rest you've read. They may be depressing, just giving you a heads up.

So as most of you know my papa who has fought cancer for over 10 years is currently in ICU and not getting better.

He's my hero, the one I look up to for strength.

He won't get better. 

I haven't lost hope, I would never lose hope, however he has cancer and unless it's a miracle by God, papa won't recover.

This is not me being a heartless person, this is me being realistic. 

There are a few things you need to know and this can relate to someone who has a chronic illness, knows someone with a disease, or just a human being in general who experiences a loss.

1. Everybody grieves differently and in different ways. Some people may cry, some people may not cry, some people may scream and yell, and some (like me) will internalize their stress and problems so much so that they start helping and taking care of others to avoid taking care of themselves. All of these ways are ok. Some may not be healthy, but when has being healthy ever been my thing, am I right?

2. Closure is not a real thing. Sorry to burst your bubble about thinking that one day you'll recieve full closure, but you won't. I'm not saying you can't strive for it, but something somewhere sometime will remind you of your loss and you'll feel that nostalgic feeling that takes you back. It's totally ok to do that. You wouldn't be a human otherwise. However, when you're facing a loss of any kind, don't think automatically that you need to be focusing on closure. You don't. It's ok to be sad. It's ok to miss that person or whatever loss you may be having (if I'm relating this to chronic illness issues, it would be the loss of good health, or the loss of experiences due to health issues). It's ok to be upset.

3. You're gonna go through phases where you cry, curse the world, and go numb. At least in my experiences with loss, that's what I do. I'll help everyone and ignore my problems until I stress myself out so much that I flare. I then get angry, cry, and a few hours later I'm better. In my current situation, I'm still in the helping others phase. I'm not going to lie to you, I get mad. Everyone does. I haven't lied to you yet on here and I don't plan on it. Whether it's a flare up or you just lost someone you love, you're gonna get mad and feel emotions and once again, that's ok. Nobody expects you to be your happy self all the time. I also just got a call that my great grandmother might not make it to the end of the day. That's two people I love right there about to leave this world and enter a place where they don't have any pain. I would be lying if I wasn't pissed off right now, daring the world to give me just one more thing to deal with because apparently they all think I'm stronger than I think I am.

This feeling happens. I've talked to others about it, especially when I'm flaring up. I like to know that I'm not the only one who likes to hit a wall and scream when I don't understand why this is happening. You're not alone and you don't have to pretend to be. 

The point of this post was to express that no matter what loss you're dealing with, whatever feelings you have associated with that loss or are experiencing with that loss should be validated and expressed and you should be told that it's ok. 

Things happen all the time that we don't understand and don't want to happen, but you'll make it through, you always do. 

"People are like stained glass windows. They sparkle and shine when the Sun is out, but when the darkness sets in, their true beauty is revealed as if there is a light from within"

- Elizabeth Kubler Ross

The Fault in Our Stars

"The fault, dear Brutus, is not in our stars, but in ourselves, that we are underlings."

That line is from Shakespeare's Julius Caesar and it's wrong.

If you read the book by John Green with the same title as my post today, you'll understand that the quote above is incorrect. The fault is not in ourselves, people are just unlucky.

Ok, yes sometimes the fault can be in ourselves because we do bad things and get in trouble for them. However, for the sake of this post and my point, the fault is not in ourselves. :)

Bad things happen to good people every single day and we don't know why. The author tries to paint a picture where we can see that two kids with cancer can fall in love and live a meaningful life even if you got the crappy end of the stick. He shows what it's like to see the real side of things (things being living with cancer as a teenager) and to understand that maybe you don't know why bad things happen, but you just have to live with it and to find the meaning in the small things and then cherish what time you do have left.

One of my favorite lines in the book is, "that's the thing about pain, it demands to be felt".

Ain't that the truth.

It won't go away, it won't quit, it won't give up, and it won't stop.
Pain demands your attention.

It takes everything you have and it won't give it back unless you admit to yourself that it won.

It's a depressing book, really. However, it has a lot of truth to it.
It opens your eyes to the not so bright side of things and while it may be fiction, it's based on a real girl and her story.

Things like this happen every single day, that's why there are books like this one, foundations to help bring to light issues that not everyone knows about, and then probably the best thing in the world: Dance Marathon.

Dance Marathon is one of the best things that I've experienced. Just like the Fault in Our Stars, it's raw, it's emotional, and it'll rip your heart out and put it back together a totally different way than when you started.

For those of you who don't know what this is, it's an event put on by students where dancers have to stand for 26.2 hours for the children's miracle network and the children who can't stand. All of the money they raise goes straight to Children's miracle network for the kids.

My brother has participated in this for 3 years now.
I love it.

I don't have many regrets, but one of them is that I didn't get involved in it when I was an undergrad.
At UWF they had a small one and it was mainly Greek life that did it (and those who know me know that I'm not fit for Greek life at all. Like no way. No offense to my Greek life friends reading this).

The families of the miracle children come and tell their stories and each time they leave the stage you are reaching for more tissue to blow your nose on.

To hear just how far these kids have come and to hear all of the bad things that have happened to them, but you look at their faces and see nothing but smiles. The to see how much dedication and hard work that was put into DM that has paid off is just truly amazing.

They see the bad, but they are focusing on the good.

When they lifted the numbers last year to show that they had reached over a million dollars I had chills from head to toe.

This year when they showed this:

Can you imagine what it felt like to be in that arena?

All of these students stand for those who can't.
They stand FTK. For the kids.

So while everyone may be unlucky and not know why bad things happen to good people or why they happen in general, we do know that there are people out there who are helping. They are bringing to light the good in the bad situation, they are helping by raising money for new research and equipment, and they are helping others live a meaningful life in every way that they can.


I'm constantly reminding myself of that this week as bad things are happening to the best man in the entire world, my papa. You have to find the good in the bad situations, you have to have hope that things will get better, and you have to rely on your friends to help you through those situations. But most importantly, you must appreciate what you do have and live without blaming something or someone for the bad things that happen.

There is fault in our stars, it's just not always in ourselves.

Keep Calm and Let it Go.

I haven't written in a while and in a moment I'll tell you why. Not in hopes that you'll feel sorry for me, but in hopes that it will help make my point at the end.

Resilience.

1. re·sil·ience

   riˈzilyəns/

   noun

   noun: resilience; plural noun: resiliences

   1. the ability of a substance or object to spring back into shape; elasticity.

      
      
   2. the capacity to recover quickly from difficulties; toughness.

   
   

The past 2 weeks have been insane. 

I've gotten in a wreck (I'm fine, but my bumper ended up in the middle of the road), My great grandparents have been sick, My grandpa is still fighting despite everything being against him, I've been working out (like running stadiums and on the treadmill) trying to lose weight to fit into a dress that won't zip when I have 13 days before it needs to, School is insane with finals and internship/practicum coming up, and it's just been a day to day making it kind of thing. 

Two things that all of that have in common is: resilience and me.

I got a compliment a few weeks ago from the professor I'm working with to put together a presentation for next years ACA conference. She told me that after reading all of the research that we've been looking at on children and adolescents with chronic illnesses, she's truly amazed at my resilience. She said that reading the information that people can go two ways: they can choose to give in or they can fight it and push through and it made an impression on her when I showed up in her class barely able to move with no makeup on, but I was there because nothing was going to stop me from doing what I needed to do. (This is totally the time I was referring to from one of my older posts). 

To me there is only one option.

I've got to push through and move onto the next thing, whether that be difficult things or easy things. 

I could have just crawled in bed and hid from the world after my wreck or any of the things above. 

But I didn't. 

I went and got a rental car after taking my car to the shop and I made it to my next class. 

I have to prove to myself and to others that nothing is going to stop or slow me down. 

I don't normally say a lot of negative things on here because I like to keep things sunny side up (fellow princess diary fans will get the joke!), but it kills me...no it doesn't kill me, it literally upsets me when you have people like my grandpa who had back surgery then THE NEXT DAY go and  take my little cousin out to dinner for her birthday when he's smiling through the pain versus people who don't show up to class or work or make excuses because they don't want to get out in the rain or they have better things to do or they've had a bad day.

Everyone has bad days, but it's up to you if you want to be resilient. 

Do you want to give in or do you want to come out feeling like, "heck yeah I just beat that!"

Which one are you?

This post is titled Keep calm and let it go because that's what you have to do in bad situations.

Those are two steps that help me bounce back and recover to move on with my day.

You must keep calm, breathe, and realize that it's not the end of the world. 

You must also let it go, because sometimes things are out of your control.

I mean, if you haven't heard it enough, go listen to Queen Elsa sing it and maybe you'll listen to her. 

When she's singing "the cold never bothered me anyway", she is meaning that because if she shoots ice out of her hands, the cold probably doesn't bother her anyway. 

However, you can also take that as the bad situation that she's in doesn't bother her because she's come to accept that she can't do anything about it....She's letting it go.

I totally just did that. 

I'm now laughing at myself while I write this.

You're welcome.

In all seriousness though, you need to think about the situations that you're in (this whole post doesn't apply to just people will illness BTW) and realize that you can be resilient through them. You'll recover, the world won't end, and you'll come out with some scrapes and bruises...but you'll survive. 

Just remember...

Keep Calm and Let it Go :)

My First Love

So for those of you who thought this would be about a boy...sorry but not this time lol! We live in too small of a town to be talking about that kinda stuff :)

Sports. That's my first love.
And if you sit down and think about it (which I have a countless number of times), it's really ironic.

Let's give the girl who has the body that's attacking itself all of the athletic genes.

Makes complete sense, doesn't it?
While the whole thing may be filled with irony, I really do hope that I've at least proven myself when it comes down to it.

There are a few reasons why this post is about sports.

The first being that the wonderful team I managed last season, UWF women's basketball is leaving today to go play in their next set of games. They just won the first ever GSC championship for the school last weekend. Working with that team made me realize how much I appreciated sports and missed the feeling of being apart of a team. Good luck Ladies! Bring home another Championship!!

The other reason being that I took my cousin, Layney, to the gym a few weeks ago for volleyball practice and when I walked into Baker School's gym I was overwhelmed with the memories.

The smell. And no, not the sweaty kids smell, but the smell of the gym floor and just the feelings that it brings back.

I think of all the war stories from the games that on any given day, my oldest friend Ariel (she's literally had my back on and off the field and court since preschool) could tell you. Yo- just leave the one out about me chasing the girl from laurel hill after she pushed me...or you pushing me back down when I wanted to go after that pace girl. Let's just only tell the ones when I didn't have a temper.... ;)

And how could I forget running all of those laps around the gym, praying each time Coach Combest wouldn't make us run more.

Then I looked up. Every time I walk in that gym I think that my name should be up there. My name should be written on the banners with all of my teammates.
But it's not.

The last game I ever played was the first one I was allowed to dress out for after I had my bad scare. I begged coach the whole game to just put me in...
She did in the last 30 seconds. And in those 30 seconds, I knew that I would never play like I used to. My body couldn't handle the speed of the game.

Basketball was the first sport I said goodbye to. It was the one I loved more than the others and when my body couldn't take it anymore....I had to leave.

My second love was softball. My dad used to have to carry me over his shoulders after a game because my ankles were too swollen for me to walk.
But I loved it.
I made varsity in the 9th grade and I can remember going to practice with the older girls and wanting to learn all the plays so I could be as good as them. I think I still remember that Britney or Amanda would go to Gracie when coach would yell Green? It's been almost 8 or 9 years since then...my memory is a little rusty.

But The day came though when I realized I couldn't play anymore.
This was a horrible day too. It was my first season back since I had my health scare and I decided I would go ahead and try out.
I did fine with fielding the ball, but then it came time to hit.

I missed every single one.

Coach Carlisle came and pulled me out of class the next day and said that I could be on the team, have a jersey, but I wouldn't be playing.

That hurt.
So I thanked him and told him no. If I couldn't play well, there was no since in me even being on the team.
That would just tick me off more.

Most people have a choice. I did, but I didn't. I chose to give it up so I could live a less painful life, but that decision was one of the hardest I've ever had to make. That decision in itself was more painful than anything I had gone through because giving something up that you love, your first love, is the type of heartbreak you can never get over.

I walked away because I knew it was the right decision.
Do I regret that?
Not every day, but on my good days because I know I could have pushed myself to play, but that would have resulted in another set of problems.

Would that have made me the best player I could be?
Would I have been as good as I was before my health scare?
Both of those answers to that question are no.
And because of that, I had to walk away.

I play sometimes...when I need to think or when I miss it.
Sometimes I find my sweet spot and can hit a few 3's in a row or I just go practice my free throws.
It's been almost a year since I shot a basketball though.
And I still haven't swung a baseball bat since that dreaded softball tryout. I've thrown a ball a few times since then though.

I'll let you know if I can still make a double play when I'm playing second base, I'll really find out when my church group plays it's first intramural game in a few weeks.

Until then, just know that sometimes the hardest decisions have to be made, not for the results at the time, but for the results in the long run.

I'm so thankful that I was blessed with the athletic genes and as much as I would love to go back, I wouldn't trade it for the world. It lead me to cheering, ballroom dancing, and many other things that I would never have thought of trying. Plus, I like to think that when people see that I'm still able to remain active with the diseases that I have, it gives them the courage to be active as well.

The Invisible Girl

No, this blog post isn't about the Fantastic Four...sorry to get your hopes up.
I'm more of a Spiderman and X-men girl myself, however being invisible is the topic of the day. 

This isn't a post about "nobody seeing who you truly are" or "how you feel like a fly on the wall" or any topic along those lines. 

This is about having an invisible disability. 

For those of you who don't know....I have one of these. 

You're probably thinking, "oh my gosh she has talked about having this one thing for how many weeks now and she's going to say she has another one?!"

Well no, but yeah I kind of am!

On the street you can walk right past me and think that I'm a normal twenty-something looking girl. You can talk to me and I sound normal, speak normal, and listen all like a normal human being would. 

But as we've covered, I'm not normal (I secretly have mutant powers that allow me to walk through walls)

No, not really...but name that superhero and I'll give you a high five!

 

I have an invisible disability. Because you think I'm normal, doesn't mean that I am. 

Invisible Disability is an umbrella term. Invisible disabilities are certain kinds of disabilities that are not immediately apparent to others (It's all in the name)

I've never really come across any type of negative stigma...for the most part...but I feel that's because I come from such a small town where everyone knew me already and saw exactly what I was going through. I didn't have to explain. 

The rest of the world won't be so willing to believe me. 

It's sad that this is something that people face every day and I've yet to even hit the tip of the iceberg with it. 

I was asked in my death class last week (it's not an actual death class, it's called loss and bereavement, but death class sounds much more interesting) if I had a handicap pass. I used to have one and recently actually got one again.

Disclaimer note: The use of the pass is only for really sick days when I don't feel like walking half a mile from the parking lot to the building. Those who know me, know that I WILL NOT take advantage of this pass. If I'm capable of walking, I will walk. 

My answer was no, because at the time I didn't have one. The teacher then went on to discuss how I will get certain looks and how do I feel about that and when it happens she wants to know if my thoughts and feelings have changed. 

Well, today was day 1 with the pass and yes....I used it. 

No looks were given. 

I guess I'll just have to wait and see what happens.

For those of you curious as to what my answer was for her, I told her that the looks won't bother me. I have a reason for this pass and as long as the ones closest to me understand, then I'm ok with the dirty looks that I'll be getting. I don't judge others when they use their handicap pass, I don't have the time to sit there and wonder why they even have one...nor does it matter. 

It's not just the handicap passes though, it's missed days from school and work, it's not being social, and it's people not believing others have problems when they really do.

Now, it's really hard deciphering which person has the invisible disability and which person just wants attention. 

That one is up for you to decide. 

I'll give you a hint though. 

Which person is still going out of their way to do things even though they are in pain?

Which person still works harder no matter the circumstances?

Which person complains more than the other?

You answer those three questions and you'll figure it out. 

The point of this post is for you to understand that this is a thing. 

People who have visible disabilities are discriminated against and that's a difficult and wrong thing.

However, people who have invisible disabilities are discriminated against as well....but you don't hear about those stories, do you? 

I was sent this chart a while back and I love it! It's so true and it's so funny, I think you will enjoy it :)

For my sake, don't go assuming people are only using the handicap spots because they are lazy. Maybe, just maybe, they might be invisible. 

I like to Move it, Move it...straight to my bed.

My weekend activities sparked a great topic that I should touch on. My wonderful friend Heather came to see my this weekend and we decided to "go out". 

Those of you who know me...know I'm in bed by like 10 every night. 

I don't "go out" and if I do it's like to dinner or a movie and I'm home in my pj's at a decent hour. 

I've just never had the urge to go be a party girl, thank goodness, but having RA has made it to where it's always impossible to get me to go out. 

Side note to show how true this is: Heather had wanted to go out, but didn't bring clothes because she didn't think I would actually say yes...so we had a spur of the moment shopping trip to go get her some clothes.

My friends know me well. 

If I do go out, I'm the DD so the others can have a good time and drink. 

Don't get me wrong, I don't mind being the DD.

I have pills I would rather take than shots of lemon drop whatever. 

It's always a pros and cons list when it comes to this sort of thing though. 

A normal girl would only have to decide what she wanted to wear and then she would hit the town in a matter of seconds. 

For me and others who may or may not be experiencing similar issues it's like this:

1. Ok, how late are we gonna be out because if I don't get enough sleep...I get sick.  

2. What am I going to wear? Heels mean I can't walk the next day, but flats mean that no one is gonna dance with me (shout out heather lol!)

3. Am I drinking tonight, if so is this yummy alcoholic beverage worth not taking my meds (you can't drink and take pills that make you not hurt at the same time...read the pill bottle guys).

4. Am I gonna dance or just people watch? Dancing means a workout which means body is exhausted tomorrow, but it's so much fun and I can totally show off my cool dance moves that I wish I had. 

There are just a lot of things to think about! 

But when Heather came this weekend, I manned up (well, you know what I mean) and I decided we would go out since I've never actually ventured out in Tallahassee before. 

We had so much fun! It was something that I needed and I'm so glad she was the one who talked me into it.

An important fact for those like me: 

You can have one drink at the beginning of the night, dance as much as you want, and still take your pills that night. 

Just be sure that you separate the time by a few hours and drink plenty of water. 

I can't promise you that your feet won't hurt if you wear heels (stupid mistake on my part, but I really wanted to dance)...mine are still killing me and it's 2 days later.

But hey, at least you had fun and looked good doing it, right?! 

So we also met up with a few of our other friends and we were dancing and having a great time! 

Here's me....dancing and having a great time..

And yes....I was told I was the whitest girl in the room. 

And yes...I'm pretty sure Heather and Liz gave me that look.

The point of this post is to remind myself and others that even if you love being in your pjs watching netflix and Idina Menzel YouTube videos because you want to avoid the decisions of drinking and dancing....it

doesn't mean that you don't deserve to let loose and get a little crazy every now and then!

For me, that was having a drink and dancing with my friends until we were exhausted (ok, it was probably just me on that last one) and walking down the street with our heels in our hands (just kidding, we didn't actually do that......). 

You aren't normal. I'm not normal. But, I like to think I am from time to time and there's nothing wrong with that.