In the blink of an eye

If there's anything that I've learned from the 8 deaths that have happened since last April it's that anything and everything will happen in the blink of an eye.

It's amazing how things can be fine one minute and then in the next it's a complete disaster.

I feel like it's all a blur.

One of the things that happened this weekend that I want to get into is how unexpected and fast pain can hit you without you even noticing it was approaching.

I had planned to come home for a few reasons this weekend and then along the way I ended up attending 2 funerals along with my original plans. I had only intended on attending one funeral and didn't think I would be staying any extra days (this is how much of a shock and just an example of how fast something can happen) therefore I didn't pack any extra meds.

Side note: I've had this disease for how long?? 17 years...you would think that by now I would always carry around extra meds just in case....well....I don't.

So I had my pills up until last night, but didn't have any for today.
My body is so used to the medicine being at a certain time that when it doesn't get it, it then begins to act like a terrible two year old throwing a tantrum.

Here's how pain surprised attacked me today.
8:00 breakfast without meds
9:00 right knee began to hurt (sign of rain, sign of flare, or sign of no meds)
11:30 Right wrist begins to disobey me when I want it to work (rule out rain, sign of flare, or sign of no meds)
By 12:45 I could barely move both of my wrists without some sort of pain and my right knee was throbbing. It was then that I remembered that "oh kara, you smart person you, you didn't take your meds this morning because you didn't pack any".

That fast. Within 4 hours, 3 of my joints were throwing a fit.
All because I didn't have a magical pill that prevents this from happening.

It's scary, really.


Now, I have to say that I've been functioning under high stress situations...no let's strike that...
I've been living in high stress situations since March. That on top of no meds can create bad bad bad flares or breakdowns or both,

Luckily, I haven't had a major flare in a while (KNOCK ON WOOD) and I hope to not have one any time in the future.

How am I handling the high stress situations you ask?!
Yeah, I don't know the answer to that.

I mean, I just push forward. I distract myself. I remind myself of the day and only think about what needs to be done in order to survive it. I think about my papa and how he made it so long fighting what he had. I think about how I can't let anything stop me because if I do, then I'll actually feel the pain.

Feeling the pain.

Now that's a topic right there.

In the blink of an eye you can go from being completely distracted and focused on something else and then...
.....BAM.....
it hits you....

you feel the pain.

I know there are 2 types of pain that I teeter totter from on a regular basis.

Those two types are emotional and physical of course!

But really, they will hit you out of nowhere.

For me I do the really healthy thing (SARCASM) where I just keep pushing myself and distract myself because I know once I slow down I'll feel it all.

It's like I mentioned a few blogs ago, the feeling you get when you've been working all day and you finally come home to lay down on your bed and then BOOM there it is. The weight of your day has piled itself on your lower back and now you can't breathe without feeling it.

That's a physical example.

An emotional one would be that you are doing alright lately and then you walk into your grandma's house to see that there are 2 bags of chips ahoy cookies on the counter knowing that your papa used to buy the BOGO ones for you because those are your favorite cookies and it hits you. He didn't do that.

Pain will hit you when you least expect it.
In fact, you can't live your life expecting the pain.
What kind of life is that?

Instead, you have to be aware of what makes the pain better, manageable, what makes it leave.

I call my friends when I'm in the middle of crying just so they can tell me random things about their day. I push through it and distract myself. I sleep. I watch netflix uncontrollably. I lay in bed if I'm hurting and hide under the covers. All of these things help the different kinds of pain that I experience.

What helps you?

It's best to know because like I said above, it happens in the blink of an eye.
You can't prevent it from coming (I mean, you can try but it's gonna catch up to you), but you can have the solutions to help it go away,

Think about those and use them. See if it helps and then let me know...
I mean, after all, I'm no expert lol! I like hearing what helps you too!

Typical New Year Post

I know, I know, I haven't written anything in a while. I've had a few people tell me that I need to write more and that they miss reading my blog. I appreciate that more than you know.

To hear someone say that they are actually reading it and enjoying it, just makes me so happy!

So here goes the typical new year post.

I decided not to make one on facebook because there is just too much to say.

Let me start out by saying that 2014 was a sucky year.
No, it wasn't sucky, it was just downright the worst year my family has ever had.

We had 6 deaths in my family. SIX.
Granted, one of those was a close family friend and the other was my dog...but really...I'm counting them.

My medicines changed and lab results came back bad more times than the amount of date offers I had in the last two years (that's really not hard to do lol!).

The statement, "When it rains, it pours" is totally true.

Don't get me wrong, there were some highlights to 2014! I was able to visit California for the first time and fell in love with it. I was also able to go see one of my best friends in DC, then road trip back with her. I'm doing well in school and also applied for the Ph.D program. I've also learned so much within the last year that I feel like I'm as old as my bones now.

I'm a really big believer in finding the positive in the negative situations and if you go back in my posts, you'll see that. You'll see that I mention looking past the negativity and knowing that you have the power to overcome and survive what's in front of you in previous posts.

But here's the ugly truth...

Every single person hides behind a happy mask. We do it all the time, but this year we did it more than usual.

We pretend we are okay and tell ourselves that we are okay because we think that if we do it enough, we will actually, honestly believe it.

I do it all the time with my Arthritis and I guarantee you that you've done it before as well.

You think that if you put on a smile and say, "I'm not in pain today, I got this.", that it will be fine.

It won't. But we do it anyway.

Now, once again, I like to find the positive in the negatives, but you know that if you read my posts, I'm honest with you too.

I love the "you can do it" attitude. But go back to one of my very first posts, the "It's ok" post and you'll see what I'm trying to get at here.

It's ok to not be ok.

I'm still working on trying to admit it myself, but after this year, it couldn't be more true.

I'm walking around with a smile on my face, but in reality I can barely catch my breath because the pain in my lower back keeps taking it away.

My grandmother says she's doing great, and she really is, but I know there are times when she won't admit that the pain she feels is like a bullet that went straight through her heart because she lost the love of her life and nothing can fix that.

Now I'm not saying that we are ever going to let our real feelings show when we are out and about, I know I have too much pride for that. Hahaha! I'm too stubborn as well!

What I'm really getting at here is that yes you can push yourself and yes you can be positive all you want, but it's ok to let it go sometimes. It's ok to admit to yourself that you are in pain and that you are hurting.

The funny thing here is that the first step is admitting that you have a problem and then working on how you can fix that problem.

So let's work on admitting that we aren't ok and then focus on the power we have to overcome it, survive it, and push past it.

We normally just want the quick fix, I do all the time.
But in 2015, let's see how we can really fix the pain and stress that we are experiencing.

Note: When I say pain here, I'm really meaning everything but the physical pain lol! When I find a way to fix the physical pain, I'll let you know.

But really, It's ok to not be ok.

That's something I'm going to work on in 2015.
I'm not saying it's going to be easy.
I'm not saying that I'm going to succeed.
I'm saying that I'm going to try.

Look, there's the positive peggy coming back out...Finally Peggy...finally.

So in 2015 I'm going to:

Workout more (Yeah, let's see how long this lasts)
Write more
Live more.
Learn to be ok with not being ok.

Here's to a new year filled with hope, happiness, and good health!


Disclaimer note: This post is not me admitting that I have a problem, it's me saying that I need to admit that I have a problem. ;)

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.