It's not me, it's them.

I just got news that my rheumatologist will be leaving me soon. Now to those of you who don't see a doctor as regularly as I do, you may find this information boring.

But for me, this is a pretty big deal.

I'm kind of upset about this.

It's like I've been broken up with....

Yes that's a tad bit dramatic, but hear me out.

You meet this new doctor who will then become your person.

You tell them your problems, they listen to you, and then they do everything in their power to help you out. 

Granted, you have to pay each time you see them....but that's beside the point. 

It's the whole getting to know them, you telling them about your medical history, everything you are allergic to (which for me is a lot), and then figuring out the level of trust that you can build that doctor/patient relationship with. 

See with this last doctor, she was pretty new to the field which made things super easy because she trusted me when it came to my health. It's really hard to find a doctor like that. 

For those of us who have health problems, you would think it would be easy going through the motions and explaining your story to a new person each time you change doctors or meet someone new on the street.

But it's not.

It's tiring and repetitive. 

Don't get me wrong, I love talking about my arthritis and will gladly do so for anyone, anytime.

But when you're sitting there filling out the paperwork for the umpteenth time, then You get to go explain it to the person....it's just....it's hard to explain. 

Why can't you just have the same doctor.

It was foolish of me to think that I had finally found someone almost in the same ballpark as my pediatric rheumatologist. 

He is amazing! 

You're probably thinking wow, she's getting really into it over a doctor...

But when you've had as many rheumatologists as Hogwarts has had defense against the dark arts teachers, it becomes a problem.

Side note: Becky Schaick gets credit for the Hogwarts joke

I've had 4 rheumatologists since leaving my pediatric rheumatologist 6 years ago. Now one of those was due to insurance changing and one of those was due to the doctor being a complete witch, but the last 2 have been because the doctor decided to leave. 

While whining about having to find a new doctor might seem juvenile, it's more about whining over the fact that I have to go through the process of trusting someone, getting them to realize my health history, and then building that relationship again.

Oh my gosh it's just like a boyfriend. No wonder I'm single ;)

So I'm going to go drown myself in ice cream and remember the times my doctor came to see me in the hospital.

I'm totally kidding, I'm not thaaaattt upset. 

Just be thankful, if you're healthy, that you only have to see one doctor...maybe once a year. You have a higher doctor succes rate than anyone that has a chronic illness will ever have. 

Be proud of that :)

Stayed tuned! The Juvenile arthritis conference is next week and I will for sure fill you in!

A dream is a wish

It's been a week since kid's arthritis camp and I have to say that this was one of the best years ever.

Not only was it Disney themed which totally rocked, but the kids were awesome! 

I mean, they are awesome every year, but there was just something special about this year. 

Like every year at camp we have a DJ come and the naval base sends over some military guys and gals to spend the night dancing and having fun with the kids. 

We normally last like 45 minutes...maybe. This year, we had like a 2 hour dance. 

All the kids participated, as did all of the counselors! 

I really don't know how any of us were able to walk the next day lol! 

But the really cool thing about that night was that we had a few people come and help the girls get ready. Just like the bibbity boppity boutique....minus having to pay 100 and something dollars for the "disney experience" :)

I can't tell you how excited the girls were to get all dressed up like real princesses! 

There were some in pirate gear too! 

3 days full of magic happened and I wasn't even at Disney.

Yes I love camp because it allows the kids to hangout and talk to others like them. It's great that they get the chance to realize that they aren't alone. But I love camp even more because it allows them the chance to be normal. 

Here they aren't worried what others are going to think because they are thinking the same thing. 

Camp give them the chance to not have to explain themselves for once in their lives. I had (still have actually) a red mustache rash from one of my meds or part of my psoriasis and nobody asked why. It was great because if I was anywhere else and when I got home and went places, people stared like I had a contagious disease. At camp, everything is normal!

Oh they have to go take pills now....

Instead of having to tell their friends why, their friends are taking the same thing!

Their doctor also comes out 2 of the 3 days of camp, just to hangout. He does crafts with them, talks to them, and even dances with them! 

How many people can say that they danced the cha cha slide with their doctor?

It truly is a hands on experience.

I started this blog because I wanted to give people an inside look at what it's like growing up with a chronic illness. I also wanted to bring awareness to Arthritis. 

I want people to see how much of a positive influence kids camp is. 

I want more camps.

I want more people to know about how kids are affected. 

I want to find more ways in which we can help them beat this. 

This is my dream.

This is my wish.

Now to just make that reality! 

Here is an awesome pic of myself, Counselor Tricia, and Counselor Austin rocking our awesome Peter Pan pose! 

By the way, this picture was taken by Cat Outzen. She's the awesome person who runs camp every year. There needs to be more people like her out there in the world! Go like Sacred Heart Children's Hospital's page on facebook to see more pics and learn more about this awesome camp and other camps like it! 

On Pause

I was thinking the other day about how right now my life is in between events.
It's like I'm on commercial break between two really adventurous and addicting shows.
It's the summer. The first true summer I've had in 2 years and the last one I'll have for who knows how long.

You would think that I'm enjoying it! Don't get me wrong, I am! I love not having responsibilities or homework or professors to impress.

But it's so hard going from 60 to 0. For the past 2 years I've had something to do all the time and now I really don't have anything.

It's been a little over a month since I've graduated and I've already read 5 books and watched 3 tv shows.

I love this time because I can relax.
But I also am not a fan of my commercial break because of 2 reasons:

The first is that I can't really do anything because of my health.
Remember that hospital stay a few months ago?! Yeah, well, that's made it to where I can't get on planes or go to Disney (that's a really big deal for me) or really even be anywhere close to someone who is really sick.

The second and probably the most difficult is that I'm growing up. This commercial break is going to end soon and I'm going to wake up and it'll hit me that I'm in a doc program. Right now it's still just words. Right now that's months in the future when in reality it's 2.5 months away. I do not like the idea of growing up lol! I think it's why I like Peter Pan so much. Growing up means more problems. The other downside to growing up is coming to terms with the fact that all of your friends leave you. Now, I've had friends move before. I have 2 in Texas, one in Hawaii, and a few in Georgia. Now the friends that I've spent the last 2 years with (that's another big deal because I'm not talking like oh you see them every now and then during those 2 years...no this is everyday all day even on the weekends for 2 years) are moving to different places.




I'm complaining right now and I'm not sorry for it lol!

What does this have to do with having Arthritis? I promise I have a point, it's not all whining lol!

Growing up is inevitable and my commercial break will end in 2.5 months. I can't stop that. I can't control that.

The future is something that everyone worries about.
Now imagine having a disability.

The uncertainty of how my body will handle the stress of a program as demanding as the one I'm entering is stressful. The thought of not having my best friends close when I need someone to crawl in bed and watch greys anatomy with me because I can't move, is scary. I could go on, but I won't.

I like my commercial break so much because it's like hitting the pause button on life for just a little bit.

Once this is over, my next adventure will begin. I'll handle it and succeed just like I do with everything else! It's normal for us to worry about what the future holds. It's exciting and scary. But that doesn't mean we won't miss how things were.

Ask me in 2.5 months if I'm ready for that adventure to start, hopefully it'll be a different answer than I have right now.

Or I might have run off to be a dolphin trainer....you never know what the future holds!!



I'll try to write more this summer and not leave you hanging for 2 months. Arthritis kids camp is coming up, so stay tuned for stories from Disney Camp!!!

Just like the good ol' days!

I survived my first full day back!
You have no idea how excited I am that this happened.
I totally thought I wasn't going to do as well as I did, but hey, sometimes you even surprise yourself.

Before I get into my story of the last week, you my dear readers get the benefit of a true first hand experience.

Now yes, all of my experiences are something that I have gone through...but they happened years ago and I'm relying on memories of hospital stays and medication troubles.

It's not really normal (since when have I ever been normal) for someone in their early 20s to have a hospital stay...or flare...or whatever you wanna call it...it just doesn't happen.

It happens when you're a kid...
Or when you're older...
Not when you're 23 and in the final stretch of your last semester of graduate school.

But it did to me.

I was due for a good flare.
The time was coming for me to get sick, not hospital sick, but to the point where my body would force me to remain in bed for a whole weekend or for a few days.

I had pushed myself to the limit for nearly 2 years, more so in this last year, but that's beside the point and I had yet to have a major flare.

It was time, I just had hoped that I could push it off for another few weeks that way I could get sick over summer break and not have to miss any school or stress over any assignments.

Well, you never really get what you want lol!

Let me say this once...
I haven't been this sick since High School.
Go back and read some of my first few posts and you'll understand what I mean by this.

Now it was a different kind of sick. In high school I had a rash, my blood was all crazy, and I couldn't move at all.

This time, I had a full body rash (yes it itched like crazy..still kinda does), my blood was all crazy, and I was in tremendous pain the first night.

So it was different, but my body was just as weak.

It all started with that dang cortisone shot in my knee that became superficially infected.
The 2 Rocephin shots plus 2 other antibiotics started my downfall.

I got a rash last thursday and I thought it was due to the stress from Comps, which if you knew how big of a deal comps is, then you wouldn't be surprised.

Well after comps I went home for what I thought was a normal weekend but nope...my body had other ideas.

Friday night, technically Saturday morning around 2am I couldn't sleep because I was in so much pain.
Like crying. Me. Real tears.

I'm also pretty sure I had a fever, but that part didn't come into play until the next night.
So Saturday I spent most of the day laying around my cousins birthday party holding the most precious little girl and just kind of being there because I didn't have the energy to do anything else.
It was Sunday when I woke up with a fever that didn't register on the thermometer and a fully body rash....like I was more red than white....that my mom decided we should take a trip to the ER.

4 nights, 5 days, countless amounts of blood draws, a ride in an ambulance because they transferred me to a different hospital (they didn't know what to do with me), and 6+ doctors later I'm finally released from the hospital with a vague idea of what put me in there to begin with.

I've never been normal....we all know that by now.

But here's the breakdown:
The 2 rocephin shots lowered my platelets to 44 (normal is 150-500). Low platlets mean bleeding to death, no immune system at all, and my personal favorite....no strength or energy.
One of the antibiotics caused the rash which is interesting because I had been on it before and I wasn't allergic but because my counts were so low...BOOM it happened.
My liver counts went up among other things...this part we are still unsure of. But I've just come to accept that this is going to be a normal thing from here on out and there's nothing anybody can really do to change that.
Oh and another thing that contributes to the exhaustion/no energy/no strength thing is that my heart was beating so fast, it was in workout mode for three days straight because of my high fever that we couldn't get down. So my heart was working out for me while my body couldn't. It was just thinking of me and how it knew I wanted to be in shape.....

So I've been on so many steroids that I'll be breaking out my big girl pants soon! Yay! Also, I'm currently off of pretty much all my meds except the steriods and I'm wearing long sleeves so I don't gross you regular people out with my bruises all over my arms (if you've seen them, you know they are nasty lol!)

I know that many of you have already been kept in the loop because of my family and friends.
Which, they are all so wonderful and I'm blessed to have them drive me around and make sure i'm ok. I couldn't be more thankful for that.

The hardest part about all of this and something that I think I've touched on before is that it's not the pain or the rash or the constant itching that gets to me. I'm used to all of that. That I can handle because I know how to handle it. There are pills for it, I know how to work my way around it...
It's the lack of energy. The lack of strength. The utter exhaustion from just doing one simple thing.

That's what gets me.

I don't like being weak.
I can guarantee you that if you ask anyone who has gone through this, they will have the exact same answer.

You can't take a magic pill and automatically have your strength back.

I was so tired that I didn't even want to watch TV. I didn't want to talk because I wanted to save my strength. I was a person who went 100 mph every single day to not being able to walk from the bedroom to the bathroom without having to stop because I got dizzy.

So yesterday when I went the full day without taking a nap, that was a success.
For the past week I had taken like 2 hour naps twice a day lol!
I NEVER take naps.

My body was just that exhausted and you know what...I HATE it.
To me, that's the worst feeling ever.
The feeling that you can't do things, not because you don't want to, but because you physically can't.
And this is different from being in pain. Being in pain gives you a reason to not do things, yes exhaustion is a reason... but weakness is not in my book.

But that was my reason this time. It's hard to accept that.
I was weak.
I still am weak.
But i'm getting stronger.
I don't have all the answers to why this happened, it just did.
My body forced me to slow down in a way that I literally had to stop everything I was doing in order to get better.

I don't like being weak, I hate the idea of it honestly. I respect and look up to people who go through this on a regular basis.

I'm just glad I made it through today with no naps, no passing out, and only a limited amount of Zombie Kara showed!

I guess sometimes your body forces you into things that you don't like so you can be more thankful for things that you do go through.

My body needed the rest.
I needed the reminder that in order to be strong, you must first know what it's like to be weak.



Side note:
Thank you for all the prayers, thoughts, questions, help, and just everything in general. Ya'll are awesome and continue to amaze me with all the support you give me and my family :)

Top 10 List: Miscellaneous

10. Ten activities to get rid of anxiety

***

This is a neat little list of things that you can do to practice lowering your anxiety. It goes back to some of the basic coping skills that you can use from yoga and exercise to positive affirmations.

http://www.healthyplace.com/blogs/anxiety-schmanxiety/2012/05/ten-activities-to-get-rid-of-anxiety/

9. 16 Gentle Exercises for People with Arthritis

***

This can be used for any type of disability when done the right way. It doesn’t have to be just for arthritis. It’s a pretty cool list of low key, not hard on your joint exercises that I found could be useful for those wanting to become active or wanting to find a new way to cope and release stress.

http://www.health.com/health/gallery/0,,20706071,00.html

8. Theory of Everything

***

Based on the life of Stephen Hawking, this movie shows his struggles overcoming the obstacles that ALS placed on him. He beat the odds with the help of his friends and family and the fact that he never gave up.  Such an inspirational movie that features someone with a disability and shows how he was able to live with it. 

7. 30+ lessons life with Chronic Illness can teach you

***

Written by a lady who has lived with a Chronic Illness for a very long time, this list includes first hand advice/opinions/thoughts on what it’s like to live with a disability. It’s always nice hearing what someone who actually deals with it on a daily basis has to say.  

http://www.thishouseofjoy.com/2014/07/07/30-lessons-life-with-chronic-illness-can-teach-you/

6. Tips of Traveling with a Chronic Illness

***

So you may be thinking why this is on a list for mental health and chronic illnesses. Well, it’s because this is information that we don’t normally think of. We tend to overlook the simple things in life, like packing or vacationing or even walking. So, why not put it on the list?!

http://pinsandprocrastination.com/tips-for-traveling-with-a-chronic-illness/

5. Coping Skills Toolbox

****

This is a pretty awesome thing to have handy! It’s simple and something that you can make all your own. It’s a toolbox for things you can pull out when you need it to calm you down and bring you back to your safe place. Check it out!

http://neoweltschmerz.buzznet.com/user/journal/17315899/lets-make-coping-skills-toolbox/

4. How Stress Affects the Body

****

I have this on here because I feel like a lot of us really don’t fully understand the impact that stress has on our bodies. This breaks it down and explains what we all need to know.

http://www.heartmath.com/infographics/how-stress-effects-the-body/

      3. What you need to know

      

      ****

      This is a basic definition list of some of the major autoimmune disorders. It’s helpful to have on hand, just like the last number about the effects of stress on the body. It’s just some resources to keep on file in case you find yourself wondering more about them.

http://www.fitnessmagazine.com/health/conditions/autoimmune-disorders-what-you-need-to-know/

1.      2.  Things you may not know about autoimmune disease

*****

I really like this page! It’s honest, it has facts, it’s written by someone who knows what it’s like to live with an autoimmune disease. Basically, it’s very relatable!

http://www.goodthingblog.com/2012/things-you-may-not-know-about-autoimmune-disease/

1.       1. Cake

      

        *****

This is a movie about a lady experiencing chronic pain after a car accident. She then befriends the husband of a lady in her chronic pain group that committed suicide and together they work their way through the healing process. It’s a great combination of what it’s like to experience depression and chronic illness. It’s a wonderful film that I recommend seeing! 

Miracles Happen

I would like to say that the high from the past 2 weeks is still going, but sadly reality has dulled it a little bit. I can thank comps and the NCE exam for that since I take them in a few weeks.

But the up side to that, is that I'm finally able to get my thoughts and emotions in order about the events that have taken place.

I've posted about it on facebook, so I'm sure you already know....but three huge things have happened!

1. I participated in my first Dance Marathon as a dance at FSU and we raised $1,100,645.52
2. I was accepted into the doc program after receiving a unanimous vote by all the professors that I highly respect and love.
3. I helped my brother out for the 3rd and final year in a row while he worked as a Dancer Relations Captain at UF's Dance Marathon where they raised $2,015,307.17.


It's no secret that since last April it has been a crazy messed up year for myself and my family.
Well, the year is almost up and these last 2 weeks have been a great start to what will hopefully be a better year.

Let's go back to the beginning: my own dance marathon.

I was awake for a total of 32 hours. I don't know if you've ever stayed awake for 32 hours, but I have not. Now I'm a person who goes to sleep at 11 (I'm totally in bed by 9:30) and I wake up at 7:00. I have a routine, but that's partially due to the fact that my body makes me have a routine.

Now I'm not gonna lie, I wasn't sure that I was going to be able to stand for 20 hours straight. I know of a few people who have chronic illnesses that have done Dance Marathon and I thought, "if they can do it, I sure as heck can do it".

That's my competitive side coming out.

There were times in which I just wanted to sit. I wanted to go sit down because I couldn't feel my bones anymore. On a regular day, I would have loved to have that problem because then I couldn't feel the pain that I was in. However, this was not one of those times. I could feel every single ache in my body while not being able to determine which area it was coming from.

Hallie Kritsas is a mad awesome lady for putting up with me and encouraging me throughout the whole marathon. She put up with my delirious self during the silent disco and continuously walking around because there wasn't anything else to do.

Here I was thinking that the bad time for me would be like 2-5 am...no. The worst time every was 6-10am. It was during this time that the only thing in the world that I wanted was an angel food smoothie from smoothie king.

Thank God for my brother.

He brought me one around 9:30 and literally spent his last dime on it.
I sucked that thing down and it didn't come out of my hands until the last drop was gone.
Then, probably one of the single handedly most embarrassing moments of my life happened and people saw it thanks to my brother and snapchat.

I cried because I couldn't hula hoop.

In my defense it was 10:00 and I hadn't slept and all I wanted to do was stay awake. But I couldn't hula hoop.

I'm a hula hoop champ.
I won the hula hoop contest my 5th grade year.
I'm awesome.
But for some reason, I just couldn't do it and I cried. Real tears.

Then, one of the best things in the world happened a few hours later.
FSU, for the first time ever, raised a million dollars.
That's a million miracles for the kids.
I still get chills thinking about it.

Next came something that I've been working months for and waiting weeks to find out.
I finally know what I'm going to do with my future lol!
Not knowing if I was going to have to grow up and be an adult or if I was going to spend the next 5 years of my life in school again was just driving me crazy.
Yes my life is going to be twice as stressful.
Yes I've been told I'm going to have to fake it till I make it.
Yes I'm going to be putting my body to the test with the amount of stress I'm going to be under.
But gosh, I'm going to be getting my Ph.D.
That right there, will be worth every tear I'm going to cry and every book I want to throw.

It all came to the end with a cherry on top when I went to gatorville for the weekend for my brother's dance marathon.
It's amazing seeing all the work he's done over the last year and so awesome to get to meet everyone he's worked with.
I also got to catch up with my friend Elise who 100% knows what I'm going through. It's rare to find someone like that, but I found a person who can honestly feel what I feel. We were able to catch up and swap hilarious stories that apparently only we find funny. It's always reassuring to get that time with someone and know that you are not crazy...and you are not alone.
His dance marathon was great! It's so organized and so much fun.
Two people who I've grown to know through my brother, Dylan and Jimmy, won two of the biggest awards that you can win there. They both worked so hard and deserved to be acknowledged for that. I'm so proud of them, and my brother, for all that they do for this cause.
I'm so proud and honored to have been there when broke records and raised over 2 million dollars for the kids.

Guys. That's a total of $3,115,952.69 for both Dance Marathons that I attended.
What.
My mind is blown.

I can't even begin to put together how many families and children that number is affecting.
I can't even begin to think of how many miracles that's making...wait no...I do.
That's over 3 MILLION Miracles.

So many feelings are still happening in my head right now.
I'm in awe, I'm honored, I'm excited, I'm touched...

One of the things that happens during DM is miracle families come share their stories of survival and how everyone is doing now. Some families also come share their stories of loved ones lost. It's meant to inspire the dancers to keep dancing and it works. It pushes us to our limits and shows us what we are really doing it for. These kids are amazing. They want to be like us. We want to be superheros like them.

The most chilling part though is that what happened to them, could happen to anyone.
It could have happened to you.
To me, that hits close to home.

I was in a children's miracle network hospital.
There was a time where we didn't know what would happen.
Now, I'm not comparing myself to them by any means, I was never as sick as some of the miracle children.
They are truly inspirational and miracles in so many ways.
I'm simply saying how in one turn of events, my life took a different path when it could have gone another way.
I'm blessed to be okay enough to dance.
I danced to prove to myself that I can be normal, I can do something to give back, I can help those who really need it, when I could have been just like them.

You could have been just like them.

But that didn't happen to us.
So what do we do?
We dance to help them.
We raise money.
We make miracles happen because these kids need them.

You know, Miracles happen once in a while, when you believe.

Do you believe?

Top 10 List: Apps

Since nearly everyone in today's world has a smart phone, here are some cool apps that I found that can be helpful!

10. Depression Check

**

This is a free app that assesses depression and anxiety in 3 minutes. It’s a neat little checker that can let you know how high your depression and anxiety levels are and then it gives you some ideas of what you can do to lower it.

9. tap to talk

**

This was a really cool app for younger kids or those who have developmental disabilities. It’s free too! But what you do is you tap a picture to talk. You can form sentences by tapping on the pictures for the words. It also includes many languages.

8. Simon says

**

You’re probably thinking why does she have a game on here….well not only is it free, but it can be used to increase memory. Plus, it’s also fun and who doesn’t love fun things.

7. Mind shift

***

This app is free and it has chill out tools for anxiety. It also provides the person with different ways to think in terms of negative/positive self-talk.

6. First then

***

It’s a schedule app for 10 dollars to help those who need visual and developmental support to increase independence and lower anxiety during transitions through activities. It’s pretty neat for those who want to work on memory and order techniques

5. ADA 2014 reference

****

This app gets for stars because everything you need to know about ADA is at the touch of your fingers. It has resources, guidelines, and basic information about the American Disability Act and it’s only 99 cent!

4. Sound amp lite

****

While it’s only 99 cents, this app does have some pretty cool things in it. Sounds are sent to your ear buds in real time and it basically amplifies the sounds when it’s noisy. This is great for someone who has trouble hearing.

3. Self-help for anxiety medication

****

This app is free, which is great! It contains customizable anxiety management techniques. It also has scales of how high a person’s anxiety is at the moment, and then provides recommendations on how to lower it.

2. Voice dream reader: text to speech

*****

So this app is the opposite of Dragon Dictation. While it may be 10 dollars, it’s worth every single one. It turns text to speech. It also has tons of languages that it can do too. It can read books to you, or can speak what you write out.  

 1. Dragon Dictation

*****

This app is awesome! I give it 5 stars because not only is it free, but it also does some really cool things. You can speak and it will write for you. It can even post to social media! What’s cool about this is that it’s helpful for those who have problems writing or even hearing in class. You can set the app up to record and basically take notes for you.