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/

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. ;)