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.