Sunday, June 29, 2014

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'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? 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!!! :)

Tuesday, June 17, 2014

It's a bird...It's a'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.

Monday, June 9, 2014

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.
You ask, I tell :)