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.

Top 10 List: Websites

Here are my top 10 picks for helpful websites for those who have disabilities and their caregivers!

10.  Top Disability Website

 **

I give this site two stars because there isn’t information on this website. Instead, I’m giving you a bonus and it’s a website that has 10 more websites! It’s a list of disability websites that offer resources, information, and support for those who have disabilities and their caregivers.

http://www.topdisabilitywebsites.com/

9. Cornell University: Disability Statistics

**

I give this website two stars because it’s an awesome site put on by Cornell University. It provides stats about disabilities and provides FAQs for those who have them. It’s a great informational website.

http://www.disabilitystatistics.org/faq.cfm

8. Kids Together, Inc.

**

This site gets two stars because it’s a neat place for kids and adults who have disabilities to come and find resources, but also blog and talk to others about their experiences. It’s kind of like a group forum and discussion opportunities for those who want information.

http://www.kidstogether.org/

7. Family Resource Center on Disabilities

**

Now this is a pretty cool website, however it’s based out of Illinois. It has workshops, resources, and guest speakers all for families who are facing disabilities. They even provide training and assistance to those who need it

http://frcd.org/

6. Support for Families of children with disabilities

**

This site, much like #7, provides resources, services, and upcoming events for families of children who have disabilities. I really like this site because it focuses on helping not just the person with the disability, but the family as a whole.  They also put on conferences that you can attend to gain more information and meet others who know what you’re going through.

http://www.supportforfamilies.org/

5. National Organization on Disability

 ***

This website is more of a professional website, but it provides Research, publications, and disability resources. Anybody can access it and anybody can gain information from here. It’s pretty cool in that it gives stats and results from research studies so people can use that knowledge and apply it to their own lives.

http://nod.org/

4. National Disability Rights Network

****

This site narrows information down by state, but it also provides really cool videos too! It’s a great advocacy website for those who have disabilities. It lists tons of “issues” that people might face and then gives information on how to handle them. This is a pretty awesome site!

http://www.ndrn.org/index.php

3. The American Association of People with Disabilities

****

This site contains resources, podcasts, and events for people who have disabilities. It also has blogs and the latest news on what’s going on in the disability world.

http://www.aapd.com/

2. Psychology Today

*****

I give this site 5 stars because it’s an awesome site for general information regarding counseling and psychology. It gives you tabs to look for therapists, topics, and expert opinions on whatever you happen to be looking for.

https://www.psychologytoday.com/

1. Disability.Gov

*****

This website is the top website for any and all information regarding disabilities. Anything that you want to know can be found here. They have stats, resources, blogs, latest news, and much more.

https://www.disability.gov/

You've got to shake it off, ah ah ah, shake it off!

It's time to tell you a story of my week with GIF's included :)
Enjoy the show!

So this was me this week. My Monday started off pretty crappy, Tuesday was even worse, and Wednesday was just a roller coaster of emotions kind of day. Imagine me, as Taylor...because why would I be anyone else...and the world and all it's problems is the sheet falling on her head.
Yes, the world was mean this week. It fell hard on my head. Dude, life can be stressful at times. Sometimes the world does this to us. It sees just how much stress we can take in so many hours. I have the benefits of having a disability on top of that (not that it really affected me much this week), but never fear, you can always count on Taylor to make things better.


(MONDAY)

As you can see here, Taylor has no idea what she's doing. This was much like my Monday. Coming back from the weekend and everything just hits you in the face. BAM! You're blindsided and now you've got to make decisions from work to school to homework and it's just crazy. The people behind me, I mean, Taylor, are my fellow graduate student friends falling down and covering their faces because they feel it too.


(TUESDAY)

The next day wasn't any better. You can see by the look on Taylor's face that she's just like, "really?! I mean, Come on". But you keep composure and you do what you have to do to make everyone happy. You fight off the stress because you can handle it, you've done it before, it's got nothing on you!


(WISHFUL THINKING)

This is what takes place, mentally lol! While on the outside you're composed and in control....on the inside you just wanna scream. It's funny because I've used another GIF in a previous post about what was going on mentally...that time it was for a flare up...this time it's for a stressful day :)
But really, we ALL want to do this from time to time, but we don't because we know better than to scream at somebody because he was just being an inconsiderate idiot or because your supervisor yelled at you...so you just wanna yell at someone else lol! It's the circle of life guys...it really does move us all!



(WEDNESDAY)

This day was just an up and down emotional mess lol! From dealing with schools, having dance battles to forget you by Ceelo Green, ignoring rude arrogant people because you can, and just work until it's dark outside....you just tend to well....look just like that. You're a crazy hott mess and you've just decided that it's ok! But then, it hits you...what happens next???


So now to really get to the point of this post, what's one way to handle all of the stress???

Well I'm glad you asked because by Thursday I had decided that the best way to do it was to make a playlist and just.....

SHAKE IT OFF!!!



I'm laughing as I'm writing this guys. I was in tears laughing because of how ridiculous this post has been so far. But you know what....Haters gonna hate, hate, hate. But really...i'm sorry, kind of!

You really do feel better when you just have a 30 second dance party though. I mean if you watch Grey's Anatomy, that's one thing they teach you :)


But really, on a serious note. How do we handle the stressors of everyday life?
Coping skills are a great thing. They stress this in our program. It's not just for those who have disabilities or anxiety, it's for everyone. I'm going to be putting up some community resources soon on my page, so be sure to look out for it. Go check out my other blog and of course I'll throw in some links to some friend's blogs about how you can do deep breathing, or mindfulness techniques, or anything really (I used humor above and you can't tell me you didn't smile or roll your eyes...because if you know me, you would think "this is something Kara would totally do" and you're right)! You have to have go to's for when you get stressed.

I know I've talked about it on here before, so it might sound like I'm beating it to the ground, however it's really important. Especially if you have a chronic illness. Stress just adds to the pain and makes it worse. But it's so hard in the world today to not deal with an insane amount of stress all the time.

I literally worked out every single day for a week and a half just so I could make myself so tired that my brain would stop thinking.

That's sad, but it's also life. So in order to deal with that, we create our own little knights who help us ward off the evils of intoxicating overwhelming stress.

I know it's cliche', but really, you just have to find your own way to....

Shake it off :)











Here are some helpful links that have posts that talk about coping skills and ways in which you can de-stress!

http://mentalhealthsmm.blogspot.com/
https://proverbs1522.wordpress.com/
http://20-somethingcounselor.blogspot.com/

Top 10 List: Twitter

Continuing with my top 10 lists, here is my top 10 list for awesome twitter sites to check out! :)

1. Disability.Gov

   *****  

https://twitter.com/Disabilitygov

This twitter site gets 5 stars because this is the U.S. federal government website for information on disability policies, programs & services nationwide. This is extremely helpful for those who want information on what’s going on in the disability world.

2. Disability Now

****

https://twitter.com/DisabilityNow

This twitter site is interesting because it’s a UK site. It has all of the opinions, information, and articles that come out of the UK. While this may not apply to clients here in the US, it’s nice to know that others feel and think the same way.

3. Disabled World

****

https://twitter.com/DisabledWorld

This is the twitter site of worldwide disability news and information. It contains health news, events, and even includes some pinterest ideas! It’s a helpful site for no matter where you live!

4. Disability Scoop

***

https://twitter.com/disabilityscoop

This is the Premier Source for Developmental Disability News. I thought this was really cool because it had entertainment news that related to disabilities. It’s always interesting hearing about disabilities in the world of movies, music, and tv!

5. Disability Website

***

https://twitter.com/Disaboom

This site provides disability information and resources for people with disabilities and their caregivers. On twitter, one of the best things to do is share resources. I found this cool because it not only included things for those with disabilities, but also their caregivers.

6. Disability Advocates

***

https://twitter.com/AdvocateAbility

This is an awesome twitter site! It’s for advocates of disabilities and a place for them to share their thoughts and findings! They state, “We advocate and facilitate action by persons with disabilities and the community to achieve equal access for all”. If that’s not awesome, then I just don’t know.

7. AbleSea Disability Community

***

https://twitter.com/AbleSea

AbleSea is a Disability Community with over 15,000 members providing information, resources, help, advice and support to everyone worldwide. It contains fun facts, resources, and articles all involving the disability community. It’s pretty neat to check out!

8. Disability Today

***

https://twitter.com/DisabilityToday

This site is kind of neat because it combines information on people, product, and places in the disability community. It also contains personal stories and opinions!

9. AAPD

**

https://twitter.com/AAPD

AAPD is America's largest disability rights organization. This twitter link provides information on internships, organizations, and workshops all in the disability realm. It’s a pretty cool site if you’re looking to get involved.

10. Disability Rights

**

https://twitter.com/CDRNYS

A center for advocacy and services for people of all types of disability, it includes blogs and opportunities for those who have disabilities. It’s a decent twitter site, but there are some better ones listed above. 

Also, If you wanna check out my other blog....here's the link :)

http://bodyandbrainpains.blogspot.com/

Helping the unhelpable

What do you do when you can't do anything?
When you want to help, but you can't.
When you want to do everything in your power to fix what's wrong but you don't have the power to do that.
It's not because you don't want to help, but there's literally nothing you can do to make it better.

So, what do you do?

The answer is quite simple to hear, but even harder to understand.

You do nothing.

Worrying about something that you can't fix isn't going to help the problem.
Does it mean we stop worrying, well no, that's not something I have the answer to.

But when you can't make someone stop hurting, when you can't help the pain go away, you have to walk away from the idea that you can help.

I'm not saying literally walk away...
That would be mean lol!

I'm saying you just have to let the idea that you have the magical healing powers go (let it gooo, let it goooo).

Now like I said above, it's easier said than done. It's not anything against you, trust me. I wish that you could fix me and make the pain go away as much as you want to fix me and help the pain go away.

This is something that nearly everyone that knows me personally and who has seen firsthand my health problems has gone through.

They want to help. I want them to help. Heck, I want to be able to help myself.

But I can't. I'm unhelpable.

And this blog is telling me that that's not a word, but I googled it and it is. So there.

But back to my point, coming to the realization that you can't be helped and there's nothing to do to help is a very hard task.

So then kara, how do I help the unhelpable?!

Well step one is you need to realize you can't....but.....

Just being there with someone while they are hurting is the number one thing. Or leaving them alone, that works too!

For example, I don't like to be touched. I'm not a touchy all the feels type of person, so for me, when I'm hurting, just having someone to lie on the couch (not near me or in a recliner beside me) and just watch movies and tv. That's how I'm helped. Just make sure I'm breathing, check on me every now and then, and I'm fine lol!


This is probably one of the hardest aspects of having a chronic illness.
Coming to the understanding that you can't fix the problem.
I'm not sure if it's something you can even grasp.

I mean, I still like to think that I can find new ways to deal with things.
Maybe that's how I help myself!

Either way, next time someone asks what they can do to help and the response is, "there's nothing you really can do", don't take it personally. It's nothing against you. You honestly can't help.

You can't help the unhelpable, but you can be there beside them, you can be there with them.

Sometimes, that's all that really matters.

Top 10 Lists: Blogs and Podcasts

Hi! 

So throughout the semester for one of my classes I will be researching the resources that I feel are helpful and then I'll be sharing them with you! Here is the first list that's filled with blogs and Ted Talks. I highly recommend checking them out :)

10. The Bloggess

 ***

This blog is about a mother/wife/woman/author/person who suffers from mental illness.  I give it three stars because it is a hilarious and honest blog about what it’s like from the person who suffers from a mental illness and the daily struggles she faces. This blog is helpful for those reasons I just stated: it’s honest, funny (sometimes inappropriate), and just raw. If you want to laugh and probably relate to her, go check out The Bloggess!

http://thebloggess.com/

9. The Gimp Parade

****

This is another blog that provides information and opinions on disabilities and all that comes with it. I give it 4 stars because It shares personal stories, songs, videos, and ideas about how to deal with disabilities and what to think about them.

 http://thegimpparade.blogspot.com/

8. Dave Hingsburger/ Rolling Around in my head

****

This blog is about raising awareness about disability. It also touches on diversity and differences. I give this blog 4 stars because it’s a man’s personal experiences and stories, along with videos of other people in order to raise awareness about disabilities. This blog is one of the biggest blogs in Canada about disability and has won numerous health and various blog awards! Check it out!

http://www.davehingsburger.blogspot.com/

7. Phil Hansen/ Embrace the shake: Ted Talk

***

This is a Ted talk about a man who developed a tremor in his hand. He tells his story of how he thought he would never be able to draw again, until one day, when he realized he could use it to his advantage. This is a very resourceful video because it shows that you can find the positive in the negatives. It also shows that you can still follow your dreams even though there may be some obstacles in the way.

http://youtu.be/YrZTho_o_is

6. Aimee Mullins/ It's not fair having 12 pairs of legs: Ted Talk

****

This is another ted talk about an amazing lady who helped design prosthetics because she herself is in need of them. This is a funny and lighthearted video. I really learned a lot watching it! I give this four stars because Aimee talks about beauty and how she hopes to make it to where people don’t label her disabled because they know nothing about it, but instead, they learn to see beauty in it.

http://youtu.be/JQ0iMulicgg

5. JJ Hanley/ JJ’s list

****

This is a blog that is a goldmine for people with disabilities. I give it 4 stars because it has everything that you could ever want from information and resources to personal stories. The website itself is a communications and marketing website for businesses who want to make their businesses more disability friendly. The blog though is the main resource that I feel is important. Like I said above, it has tons of information on awareness, employment, benefits, and just resources in general.

 http://www.jjslist.com/blog/

4. Maysoon Zayid/ I got 99 problems... palsy is just one: Ted Talk

****

This is a video of a comedian who has a disability. She goes on throughout the video to tell her story in a hilarious, lighthearted, and uplifting way. I give this video 4 stars because it represents the perfect combination of what someone is looking for when they look for resources on people with disabilities. It has humor, truth, and an outlook on life that’s genuine. Maysoon pushes her own limits and succeeds because she knows she can.

http://youtu.be/buRLc2eWGPQ?list=FLXYdkcx30DCwuatxBnyS6hA

3. Stella Young/ I'm not your inspiration, thank you very much: Ted Talk

****

This video is absolutely wonderful. I give this video 4 stars because of Stella’s humor and honesty. In the video Stella tells her story and how growing up people would think she’s an inspiration when she doesn’t think she is. It’s an important resource because it shows that not everyone who has a disability likes being the “inspiration” and sometimes, we are just regular people.

http://youtu.be/8K9Gg164Bsw?list=FLXYdkcx30DCwuatxBnyS6hA

2. Amy Purdy/ Living Beyond Limits: Ted talk and Greeting Adversity: Ted Talk

*****

This is the only link on here that you will see 5 stars because it's the best video about disabilities that I've seen. It’s also the only number that has 2 links with it. I went ahead and added the second video because it’s very similar to the first, but with a different spin on it. I LOVE Amy Purdy. She’s amazing and just a good person in general. In the video she talks about how she lost both of her legs and her journey to live beyond the limits placed upon her. This is a great resource because not only is it inspirational and funny, but it’s an amazing story to hear. It's also raw and emotional and she nearly breaks down a few times sharing her story because it's just that real. 

http://youtu.be/N2QZM7azGoA?list=FLXYdkcx30DCwuatxBnyS6hA (10 Minutes)

http://youtu.be/YhnCNC6ROGc?list=FLXYdkcx30DCwuatxBnyS6hA (16 Minutes)

  

1. Kara Dingess/Chronic Illness and Mental Health

****

I’m a little biased on this one. This is my blog for school and it includes information on chronic illness and mental health. I give it four stars because it has everything from coping skills to top ten lists and much more. Go check it out!

http://bodyandbrainpains.blogspot.com/