I went to the doctor today.
Yes I go to the doctor all the time so it's not that interesting, I know.
However, I went because my lovely red mustache is back and I'm tired of not being able to fix it.
Which I should be used to not being able to fix my health at this point in my life, but you know, whatever.
So he, like all the other dermatologists that I've seen, told me that it was something I was allergic too (great!) that is constantly suppressed by the prednisone that I take and whenever I lower that, my rash comes back.
He said that until we find what I'm allergic too (been there, have yet to find it) the rash won't go away.
Now in my mind, the simple fix is to up my steroids like I normally do and BOOM! Problem solved.
But he, along with my new rheumy, want me off of this drug because of the many many harmful things it does to the body and blah blah blah....I've been on it 8+ years now, I've heard this speech before.
But it fixes things! It makes my life easier and it makes me feel so good!
And if you said I sound like an addict, you would be correct!
So I'm now at a crossroads.
My choices are:
Do I detox from the prednisone and have the red mustache until we can figure out what I'm allergic to (which there is no guarantee we will ever find out), while being in pain. The benefits from this are that the nasty side effects from the steroids won't be as bad, my organs won't shutdown, and I'll be alive and overall in a healthier state.
or
Stay on the steroids because it's the easy fix, I will live a somewhat pain free life where I don't have a mustache and it'll slowly kill my insides while adding 10 extra pounds but I'll be able to do the things I want to do while delaying my bones from deforming.
What do you do?
Do you take the horrible medication now because it allows you to live and look the way you want...
or
do you stop the medication in hopes of prolonging your life and allowing your body to not kill itself sooner than it will.
What happened to the simple decisions of a twentysomething...you know the ones where you decide what to wear, what guy to date, what movie to see, what job you want.
Not the ones of...
What medication will not break me out into hives and shut down my immune system?
What food and beauty product do I need to avoid in hopes of not having a red rash?
At what point in my life will I not be able to use my hands anymore?
What job do I need to get in order to get the best insurance?
When will I find a guy who won't be terrified of my disease?
How much stress is too much stress before a flareup comes?
I wonder what joint won't work today?
I wonder if I can get away with wearing sweatpants to school? (the answer is always no)
Is 8:00 too early to be in bed?
And many more!
I've never regretted the fact that I had arthritis. I mean, I never had a say in the matter to begin with and there are worse things I could have. But I wouldn't be normal if I didn't question it or get angry at it from time to time.
People say to me all the time, "I hope you feel better soon", "I hope you get better", "I wish I could take the pain away", and "I don't know how you do it".
I don't mind them saying that at all. It's nice of them to do that!
But the reality of it is:
Sure, I'll have my feel good days, but I'm not going to be getting better.
I've been seeing my future a lot lately in people around me who have RA and with the looks and talks the doctors give me.
I can only hope that better biologics come out that can slow the progression of the RA. I can only hope that my fingers and wrists and knees won't swell and will stay at the level of mobility that they are at.
It's funny, my new rheumy was checking my wrists and she slipped out with, "Oh, that's as far as they go" and then decided to order an x-ray lol! I just laughed, because that's all you can do.
How do I do it?
I just do.
I don't have another option.
My options are above.
Do I stop taking the steroids that are the worst possible thing for me in order to save everything else?
I know people who have RA that aren't on them and they can function, so why can't I?
Or do I stay on them and potentially deal with the side effects...but I'll be in less pain?
Let me remind you of my addiction post that was enforced by the doctor today who told me "getting off prednisone is like trying to detox from crack-cocaine".
I don't want to make these decisions.
I just want to color in my Harry Potter Adult coloring book and watch movies.
Which I'm laughing right now because I can really only color half a page before my hands stop working lol! Guys it really is funny!
You've gotta laugh through it all because if you don't have a sense of humor (even a dark and twisty one like me) then the struggle to get by is real.
And trust me, you don't want to the struggle to be real lol!
I hope that throughout my many posts you're able to see what it's like inside the mind of a person living with a chronic illness. If you have any questions or topics that I can write about, maybe you're interested in how I deal with a specific situation or how I think about a certain topic...please let me know! I'm here to ramble and let you in. Thank you for all the love and support and allowing this blog to reach many people.
I hope you have a Merry Christmas!
Tuesday, December 15, 2015
Sunday, December 6, 2015
Finally found the one...for now.
If you've been keeping up with my posts (which I know have been slacking lately to do school) then you know that I've gone through more doctors than Hogwarts has gone through defense against the dark arts teachers.
However, I think I've finally found the one.
I met her last Wednesday and guys, when you know, you know.
It's really hard to meet a new doctor. And I've talked about this before, but it's not hard to deal with...it's just hard to have to explain yourself again to a new person.
Especially when that person is the one who has all the power and controls whether or not you'll get your medication or not.
This new doctor was wonderful. She really made me feel like I was the expert and that she was here to help me in this process. Which is what doctors should do!
I didn't even have to give her my speech about how I was the one that will play doctor from time to time.
It really helped that she was able to joke back with me about my arthritis.
Now don't get me wrong, we had our serious moments.
For example, she was the first doctor in a while who got me to take a flu shot.
Now, realize that in order for a relationship to work...there has to be give and take.
She gave me the option of taking one or else and I took it!
But really lol! Some battles are not worth fighting.
I wanted to gain her respect and by doing something like that, I feel that I'm being a good patient.
Which I warned her that I myself am a good patient, but my arthritis is not.
Side note: Every time I've gotten the flu shot, I've gotten the flu. Which she says was a coincidence, buuttttt no. So we made a deal that If I was to actually get the flu this time, she would allow me to tell her "I told you so". Which I loved!
I even mentioned to her that I had a blog and how I helped out at Kid's arthritis camp and you know what?? She was interested in both. She immediately thought of someone who could benefit from talking to me.
How great is that?
The sad thing is, I'm constantly wondering how long this is going to last. Will insurance change and I'll have to switch? Will she get tired of the way the hospital treats her and leave for private practice (This happens a lot)? Will something bad happen and I won't be able to see her anymore?
All of these thoughts run through my head. It's like having an awesome first date and then you wait for the guy to mess up. Like you know they have flaws so you begin to search for them.
It's always too good to be true, right?
So how does one fix those problems?
Is there a way to advocate for specialists to be treated the right way?
Is there a way for me to tell the insurance company I'm going to see who I want to see?
The second one is probably true, but I'll have to pay an extreme amount for that to happen and well, I'm not married to a rich celebrity, so that won't happen.
But seriously, when you have a chronic illness and you finally find someone who clicks with you, you're going to do whatever you can to keep that working relationship afloat.
And if you have a chronic illness and don't see someone who works great with you, I suggest you go find one. Your illness isn't going to get any better if you don't make the initiative to help solve the problem.
Maybe like Hogwarts, you've gotta go through some dementors, some crazy adventures, and one big war with insurance before you finally find something that works for you.
But once that's over, you'll be in a better place....with meds that actually work and a doctor that does everything she can to help you.
Keep your fingers crossed that this one works out!
However, I think I've finally found the one.
I met her last Wednesday and guys, when you know, you know.
It's really hard to meet a new doctor. And I've talked about this before, but it's not hard to deal with...it's just hard to have to explain yourself again to a new person.
Especially when that person is the one who has all the power and controls whether or not you'll get your medication or not.
This new doctor was wonderful. She really made me feel like I was the expert and that she was here to help me in this process. Which is what doctors should do!
I didn't even have to give her my speech about how I was the one that will play doctor from time to time.
It really helped that she was able to joke back with me about my arthritis.
Now don't get me wrong, we had our serious moments.
For example, she was the first doctor in a while who got me to take a flu shot.
Now, realize that in order for a relationship to work...there has to be give and take.
She gave me the option of taking one or else and I took it!
But really lol! Some battles are not worth fighting.
I wanted to gain her respect and by doing something like that, I feel that I'm being a good patient.
Which I warned her that I myself am a good patient, but my arthritis is not.
Side note: Every time I've gotten the flu shot, I've gotten the flu. Which she says was a coincidence, buuttttt no. So we made a deal that If I was to actually get the flu this time, she would allow me to tell her "I told you so". Which I loved!
I even mentioned to her that I had a blog and how I helped out at Kid's arthritis camp and you know what?? She was interested in both. She immediately thought of someone who could benefit from talking to me.
How great is that?
The sad thing is, I'm constantly wondering how long this is going to last. Will insurance change and I'll have to switch? Will she get tired of the way the hospital treats her and leave for private practice (This happens a lot)? Will something bad happen and I won't be able to see her anymore?
All of these thoughts run through my head. It's like having an awesome first date and then you wait for the guy to mess up. Like you know they have flaws so you begin to search for them.
It's always too good to be true, right?
So how does one fix those problems?
Is there a way to advocate for specialists to be treated the right way?
Is there a way for me to tell the insurance company I'm going to see who I want to see?
The second one is probably true, but I'll have to pay an extreme amount for that to happen and well, I'm not married to a rich celebrity, so that won't happen.
But seriously, when you have a chronic illness and you finally find someone who clicks with you, you're going to do whatever you can to keep that working relationship afloat.
And if you have a chronic illness and don't see someone who works great with you, I suggest you go find one. Your illness isn't going to get any better if you don't make the initiative to help solve the problem.
Maybe like Hogwarts, you've gotta go through some dementors, some crazy adventures, and one big war with insurance before you finally find something that works for you.
But once that's over, you'll be in a better place....with meds that actually work and a doctor that does everything she can to help you.
Keep your fingers crossed that this one works out!
Tuesday, October 20, 2015
Stress, Surprises, and Spoons
I'm going to do something different in this post. I know I haven't written in a while and that's just because my schedule hasn't made it to where I can take a break and actually write down my thoughts. I was also debating whether or not to share this post with the world. Well, I made the somewhat hesitant decision to do so. But I'm doing it because I want to show you just how amazing you are.
Nobody knew I wrote this post. I wrote it about 2ish weeks ago when I was hurting and had a horrible day. I wanted to give you an personal, inside look at what it's like to struggle with pain, thoughts that come with it, and stress. It was one of those "I'm going to type out my feelings just as they are" type of things.
So enjoy! lol!
_______________________________________________
Lately I've been thinking a lot about my life and if I'm going in the right direction.
School is stressful, man.
And for the past few weeks I've been fighting to stay functional.
The stress takes a toll on your body and when you have a chronic illness that can be the one thing that makes or breaks you.
Can you handle the stress?
These days, I don't know.
At what point do you let the stress and pain take over?
At what point do you beg for mercy because you can't handle another day and all you need is just a breather?
I like to think it wouldn't be this bad if I was back on my steroids, but those cause problems too.
I've been on them over 7 years and finally I'm off of them.
That is a miracle in itself!
I've never really been able to get off of them, but I'm going on a month and 12 days of being free of them.
But those help.
So what's the lesser of 2 evils?
Oh and the cherry on top is that I'm out a rheumatologist until November.
The good times just keep on rolling in!
But these things are just obstacles, right?
They aren't signs that I should give up, throw in the towel, and walk away?
They aren't voices in my head saying that I can't do this.
They aren't taunting me, saying that I'm too weak to make it to the end.
Saying that the odds of a person with a chronic illness making it to her doctoral graduation are slim to none.
I mean the research favors that very notion.
All of that isn't true, is it?
Am I wasting my time and energy on something that is killing me?
Is the end result worth what I'm putting my body through?
Or is the exhaustion, pain, and frustration just getting to me?
Shake it off, right?
I won't quit.
I will push forward.
I mean, Lauren Holiday had open heart surgery as a kid and now she's about to retire from an amazing soccer career. She's on the US women's national team, you know, the ones that just won the world cup.
I recently talked to a wonderful lady who just did an Ironman and she has RA. An Ironman! I can barely walk a few miles!
I know another one who just graduated with her Ph.D from NYU and she works for the arthritis foundation helping kids just like us.
It's not impossible.
It can be done.
I wrote this out because I thought it would make me feel better. And I was right....it did, for that day.
I also wrote this out so you could see the struggles that we are faced with. I know I talked a few weeks ago about the places are minds will wander when we are in pain. Well, these are some of those thoughts. We start to second guess ourselves. We slowly start to lose faith in our abilities. We start to realize that life might be easier if we just let those feelings take over.
But then what would that make us? To me, that would make me a quitter. That would make me regret something that I had the power to control. I always remind ya'll that I don't have all the answers. But I do know that I want to beat the odds.
_______________________________________________
After I wrote this post I went to class, came home, and checked my mail.
In the mailbox was my first spoon.
I was so confused! lol! Why did I have a spoon in the mail!
Then over the course of the next few weeks I got more and more spoons.
I can't begin to tell you all how much that meant to me.
Other than my blog, I'm not one who likes to dwell on the fact that I go through these things.
I don't like talking about the struggles and I don't really like others to know about them.
This blog has given me the opportunity to share those parts of me in hopes that I can reach out to others.
I don't do this for pity. I don't do this for sympathy.
I do this because others who are going through the same things need to know they aren't weird, or crazy, or alone.
So thank you all for reminding me that I'm not alone.
Thank you for giving me the spoons I need to survive each stressful, crazy, and insane day I have.
Thank you for continuing to read my rambling thoughts and supporting me in all that I say and do.
And if you ever come over, I now have enough spoons for all of you :)
Nobody knew I wrote this post. I wrote it about 2ish weeks ago when I was hurting and had a horrible day. I wanted to give you an personal, inside look at what it's like to struggle with pain, thoughts that come with it, and stress. It was one of those "I'm going to type out my feelings just as they are" type of things.
So enjoy! lol!
_______________________________________________
Lately I've been thinking a lot about my life and if I'm going in the right direction.
School is stressful, man.
And for the past few weeks I've been fighting to stay functional.
The stress takes a toll on your body and when you have a chronic illness that can be the one thing that makes or breaks you.
Can you handle the stress?
These days, I don't know.
At what point do you let the stress and pain take over?
At what point do you beg for mercy because you can't handle another day and all you need is just a breather?
I like to think it wouldn't be this bad if I was back on my steroids, but those cause problems too.
I've been on them over 7 years and finally I'm off of them.
That is a miracle in itself!
I've never really been able to get off of them, but I'm going on a month and 12 days of being free of them.
But those help.
So what's the lesser of 2 evils?
Oh and the cherry on top is that I'm out a rheumatologist until November.
The good times just keep on rolling in!
But these things are just obstacles, right?
They aren't signs that I should give up, throw in the towel, and walk away?
They aren't voices in my head saying that I can't do this.
They aren't taunting me, saying that I'm too weak to make it to the end.
Saying that the odds of a person with a chronic illness making it to her doctoral graduation are slim to none.
I mean the research favors that very notion.
All of that isn't true, is it?
Am I wasting my time and energy on something that is killing me?
Is the end result worth what I'm putting my body through?
Or is the exhaustion, pain, and frustration just getting to me?
Shake it off, right?
I won't quit.
I will push forward.
I mean, Lauren Holiday had open heart surgery as a kid and now she's about to retire from an amazing soccer career. She's on the US women's national team, you know, the ones that just won the world cup.
I recently talked to a wonderful lady who just did an Ironman and she has RA. An Ironman! I can barely walk a few miles!
I know another one who just graduated with her Ph.D from NYU and she works for the arthritis foundation helping kids just like us.
It's not impossible.
It can be done.
I wrote this out because I thought it would make me feel better. And I was right....it did, for that day.
I also wrote this out so you could see the struggles that we are faced with. I know I talked a few weeks ago about the places are minds will wander when we are in pain. Well, these are some of those thoughts. We start to second guess ourselves. We slowly start to lose faith in our abilities. We start to realize that life might be easier if we just let those feelings take over.
But then what would that make us? To me, that would make me a quitter. That would make me regret something that I had the power to control. I always remind ya'll that I don't have all the answers. But I do know that I want to beat the odds.
_______________________________________________
After I wrote this post I went to class, came home, and checked my mail.
In the mailbox was my first spoon.
I was so confused! lol! Why did I have a spoon in the mail!
Then over the course of the next few weeks I got more and more spoons.
I can't begin to tell you all how much that meant to me.
Other than my blog, I'm not one who likes to dwell on the fact that I go through these things.
I don't like talking about the struggles and I don't really like others to know about them.
This blog has given me the opportunity to share those parts of me in hopes that I can reach out to others.
I don't do this for pity. I don't do this for sympathy.
I do this because others who are going through the same things need to know they aren't weird, or crazy, or alone.
So thank you all for reminding me that I'm not alone.
Thank you for giving me the spoons I need to survive each stressful, crazy, and insane day I have.
Thank you for continuing to read my rambling thoughts and supporting me in all that I say and do.
And if you ever come over, I now have enough spoons for all of you :)
Tuesday, September 22, 2015
I've got no spoons left
If you haven't heard of the spoon theory, I highly suggest you click on the link below and check it out.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
It's pretty awesome!
I will go ahead and give you the cliff notes version for the sake of this post though! lol!
Basically, a girl with a chronic illness was trying to explain to her friend that she just couldn't hangout because she didn't have any energy. The only thing she had in front of her was spoons, so she used them! She told her friend that she only gets 12 spoons and she took 12 spoons as well. The spoons represent the amount of energy used up doing an activity. She then goes on and talks about her day and subtracts the spoons as she goes along. She was doing her best to show her friend that they can't do the same activities and still feel the same way.
By the end of explaining her day, her friend only had 1 spoon left and she still had to eat and shower. She was asked, "what are you going to do? You can make dinner, but you lose your spoon. Or you can eat leftovers and use little energy that way you can shower. It's a decision that you have to make". Her friend asked for more spoons, but was told that she wasn't allowed to get any more. Once you use your spoons, you have to rest in order to get some back. By the end of the example, her friend finally understood that when you have a chronic illness, you can't do everything.
I LOVE this example and I really want you to go read the link because I missed a lot of stuff that you should hear!
This is a topic that I struggle with all the time because I want to do everything and hangout with everyone.
I feel like I let people down if I don't say yes to them.
It's something I've got to start working on because school drains me enough, I have to be smarter about using my spoons.
But then I start to think about the expectations placed upon me by my professors and school. I have to be the best, give the best, and do the best I can.
It's like this, except if I use all of my spoons on those things I can barely function.
So which area of my life do take spoons from to use them for school? Or my friend? Or my family?
Or do I continue to run on negative spoons all day everyday.
Ugh. The struggles of having a chronic illness.
If you figure it out, let me know.
Until then, i'll be using a spoon...or two...to write 3 papers this weekend.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
It's pretty awesome!
I will go ahead and give you the cliff notes version for the sake of this post though! lol!
Basically, a girl with a chronic illness was trying to explain to her friend that she just couldn't hangout because she didn't have any energy. The only thing she had in front of her was spoons, so she used them! She told her friend that she only gets 12 spoons and she took 12 spoons as well. The spoons represent the amount of energy used up doing an activity. She then goes on and talks about her day and subtracts the spoons as she goes along. She was doing her best to show her friend that they can't do the same activities and still feel the same way.
By the end of explaining her day, her friend only had 1 spoon left and she still had to eat and shower. She was asked, "what are you going to do? You can make dinner, but you lose your spoon. Or you can eat leftovers and use little energy that way you can shower. It's a decision that you have to make". Her friend asked for more spoons, but was told that she wasn't allowed to get any more. Once you use your spoons, you have to rest in order to get some back. By the end of the example, her friend finally understood that when you have a chronic illness, you can't do everything.
I LOVE this example and I really want you to go read the link because I missed a lot of stuff that you should hear!
This is a topic that I struggle with all the time because I want to do everything and hangout with everyone.
I feel like I let people down if I don't say yes to them.
It's something I've got to start working on because school drains me enough, I have to be smarter about using my spoons.
But then I start to think about the expectations placed upon me by my professors and school. I have to be the best, give the best, and do the best I can.
It's like this, except if I use all of my spoons on those things I can barely function.
So which area of my life do take spoons from to use them for school? Or my friend? Or my family?
Or do I continue to run on negative spoons all day everyday.
Ugh. The struggles of having a chronic illness.
If you figure it out, let me know.
Until then, i'll be using a spoon...or two...to write 3 papers this weekend.
Friday, August 28, 2015
Controlling the uncontrollable
I survived the first week of my doctoral program!
Yay me!
It wasn't without a few hiccups though.
2 to be exact and both of which I had no control over.
The first one I won't explain because it's not as funny as the second one.
So today was my last day of classes for the week and the worst thing happens!
It's a foundations class, so my professor was discussing professional things like when we attend conferences we are supposed to act this way and do that and blah blah blah.
Well one of the activities was to shake everyone's hand in the classroom.
There were 25 of us in there.
Anyone who knows me, knows that I don't like to be touched.
I don't like hugs. I don't like you in my bubble. And I sure as heck don't want to shake 25 different hands that have been who knows where.
I'm not OCD...I don't meet the criteria, I promise.
Anyway, she makes her way to each of our desks and gives us a "practice" round so she can tell us how bad we are.
She gets to my desk and I stand up.
She sticks out her hand and I look up at her and just decide to go for a fist bump instead.
Now, this professor had me in the spring, so she knows me.
She shakes her head, laughs, and makes me do it.
She then turns to the class and says that it's time to shake everyone's hand.
I lose it.
After shaking 2 people's hands...I'm now shaking myself.
By the time I get to number 4, everyone else is done!
So now she looks at me, asks what number I'm on, and then tells the class that I have to at least get to 10 so they need to come help me.
I'm still shaking (both of my hands were trembling like crazy) and now it's getting harder to breathe.
I make it to 6 and now everyone is in a circle around me.
Yeah, let's form a circle around the girl who is nearly having a panic attack and let's watch her fail at doing a simple task.
Finally, I make it to 10 people and she let's us go wash our hands.
I was traumatized by that point and the rest of the class time was spent calming myself down.
I'm telling you this story because it's something that I had no control over and I failed miserably at keeping it together.
If you haven't guess by now, I'm a control freak.
I don't try and hide that at all.
I like planning, cleaning, making lists, and making sure things are in order.
Everything in my apartment has a place and once I'm done with it, it goes back where it belongs.
I have a weekly to do list.
Things get crossed off and then I start over.
It's just a part of me that I accepted a long time ago.
My grandmother called me mother hen when I was in 3rd grade because I used to boss my brother around and make sure he had everything done.
It was at this moment that I embraced my destiny to be someone who loves order.
I think I'm this way because I don't have control over any aspect of my health therefore I try and make up for it in other areas of my life.
So how do we control something that we have no control over?
This came up at the conference a few times.
We don't have the slightest bit of control over when we are going to flare, how our medicines work, or if we are even going to be able to walk in the next few years...or even the next day.
For me, it's one of the hardest things to think of.
If I can't control what's going on inside my own body, how am I supposed to control anything else that happens in my life?
It makes me feel like a failure at times.
As a counselor, we do our best to help our clients gain back that control. We help them find coping mechanisms that work and so on,
But I can never gain control of it. I can find coping skills that will help though.
Sometimes, I just say "forget it, there's nothing I can do", but other days I struggle with letting it go.
It's like, why can't I fix this. It's my own body and I should be able to make it do what I want it to do.
Breathing helps.
Sometimes lol!
In all honesty, I have a masters in counseling and I can't tell you how I cope with this lol!
I never said I had all the answers!
I'm learning and experiencing things too.
I can tell you that you are definitely not alone.
We can control if we actually take our medication or not.
But we can't control how it will work.
I wouldn't be allergic to nearly all the medications out there if I could control how my body reacted!
We learned at the conference that for every one problem you have, there's a 20 percent chance you'll pass that on to your children.
Well I've lost count of the problems that I have...so here's something I actually can control.
My papa used to say why worry about it if you can't fix it. He used to tell me that I shouldn't worry about things that I can't control because it'll just make me feel worse. There's no use in wasting that energy.
He's right, but when it comes to my arthritis, it's something that I have to worry about.
Or do I?
Why not just live today, right?
Oh that's right...because I'm a control freak and need a plan for my life lol!
I remember now!
Like today's uncontrollable moment, you just have to put one foot in front of the other and push forward.
Handle things one day at a time.
Control what you can and do your best to not lose your mind over the uncontrollable pieces.
I'll be here with you trying to remind myself of the same thing :)
Yay me!
It wasn't without a few hiccups though.
2 to be exact and both of which I had no control over.
The first one I won't explain because it's not as funny as the second one.
So today was my last day of classes for the week and the worst thing happens!
It's a foundations class, so my professor was discussing professional things like when we attend conferences we are supposed to act this way and do that and blah blah blah.
Well one of the activities was to shake everyone's hand in the classroom.
There were 25 of us in there.
Anyone who knows me, knows that I don't like to be touched.
I don't like hugs. I don't like you in my bubble. And I sure as heck don't want to shake 25 different hands that have been who knows where.
I'm not OCD...I don't meet the criteria, I promise.
Anyway, she makes her way to each of our desks and gives us a "practice" round so she can tell us how bad we are.
She gets to my desk and I stand up.
She sticks out her hand and I look up at her and just decide to go for a fist bump instead.
Now, this professor had me in the spring, so she knows me.
She shakes her head, laughs, and makes me do it.
She then turns to the class and says that it's time to shake everyone's hand.
I lose it.
After shaking 2 people's hands...I'm now shaking myself.
By the time I get to number 4, everyone else is done!
So now she looks at me, asks what number I'm on, and then tells the class that I have to at least get to 10 so they need to come help me.
I'm still shaking (both of my hands were trembling like crazy) and now it's getting harder to breathe.
I make it to 6 and now everyone is in a circle around me.
Yeah, let's form a circle around the girl who is nearly having a panic attack and let's watch her fail at doing a simple task.
Finally, I make it to 10 people and she let's us go wash our hands.
I was traumatized by that point and the rest of the class time was spent calming myself down.
I'm telling you this story because it's something that I had no control over and I failed miserably at keeping it together.
If you haven't guess by now, I'm a control freak.
I don't try and hide that at all.
I like planning, cleaning, making lists, and making sure things are in order.
Everything in my apartment has a place and once I'm done with it, it goes back where it belongs.
I have a weekly to do list.
Things get crossed off and then I start over.
It's just a part of me that I accepted a long time ago.
My grandmother called me mother hen when I was in 3rd grade because I used to boss my brother around and make sure he had everything done.
It was at this moment that I embraced my destiny to be someone who loves order.
I think I'm this way because I don't have control over any aspect of my health therefore I try and make up for it in other areas of my life.
So how do we control something that we have no control over?
This came up at the conference a few times.
We don't have the slightest bit of control over when we are going to flare, how our medicines work, or if we are even going to be able to walk in the next few years...or even the next day.
For me, it's one of the hardest things to think of.
If I can't control what's going on inside my own body, how am I supposed to control anything else that happens in my life?
It makes me feel like a failure at times.
As a counselor, we do our best to help our clients gain back that control. We help them find coping mechanisms that work and so on,
But I can never gain control of it. I can find coping skills that will help though.
Sometimes, I just say "forget it, there's nothing I can do", but other days I struggle with letting it go.
It's like, why can't I fix this. It's my own body and I should be able to make it do what I want it to do.
Breathing helps.
Sometimes lol!
In all honesty, I have a masters in counseling and I can't tell you how I cope with this lol!
I never said I had all the answers!
I'm learning and experiencing things too.
I can tell you that you are definitely not alone.
We can control if we actually take our medication or not.
But we can't control how it will work.
I wouldn't be allergic to nearly all the medications out there if I could control how my body reacted!
We learned at the conference that for every one problem you have, there's a 20 percent chance you'll pass that on to your children.
Well I've lost count of the problems that I have...so here's something I actually can control.
He's right, but when it comes to my arthritis, it's something that I have to worry about.
Or do I?
Why not just live today, right?
Oh that's right...because I'm a control freak and need a plan for my life lol!
I remember now!
Like today's uncontrollable moment, you just have to put one foot in front of the other and push forward.
Handle things one day at a time.
Control what you can and do your best to not lose your mind over the uncontrollable pieces.
I'll be here with you trying to remind myself of the same thing :)
Monday, August 17, 2015
We all lose something
Every single one of us will lose something or someone during our lifetime.
That's a fact.
If you go back a few blogs you'll read how my family lost 9 people in one year.
I like to think that my brother would lose his head if it wasn't attached!
Really!
Whether it's losing someone we love or losing something replaceable, we all lose things.
I once took a class on Loss and Bereavement.
Ironically enough, it was the same semester that my horrible year began.
It was also one of the best classes I have ever taken.
Now you're probably wondering why I'm talking about this topic on my blog.
Well, it fits perfectly, and you'll see why.
My professor said during that semester that the grief and emotional pain that someone goes through can be related back to a loss of some kind. She said it didn't have to necessarily be about losing someone. It could be about losing a home, a friend moving away, a pet dying, going to a new school, etc.
She made it clear to the class that it could be anything that caused great stress, sadness, and a sense of loss.
Here I was thinking it was just about being sad that someone you loved had passed away.
Nope, I was wrong.
One of the projects in class was to draw out our hand and write down 5 of our biggest losses.
I was struggling with the 5th one and knew somehow that it would be related to my arthritis.
I started thinking.
I always say I've never been normal.
But how can I lose something that I never really had to begin with?
Now I wasn't diagnosed until I was 6 years old, so we could argue that I was a normal kid for the first few years of my life. But I barely remember anything from when I was that young. I can think of a few memories, of course, but the biggest chunks of my life come from when I was older.
I lost the chance to be normal.
I lost the chance to live a normal, pain free, no medication life.
I found my fifth finger! lol!
Also, I don't want you thinking I'm angry about this.
I'm not!!
I loved this class because everything we learned was so true!
Just because I make it sound really depressing, doesn't mean I'm upset about it.
Remember, the point of this blog is not for you to feel sorry for people with chronic illnesses.
The point is for you to see inside the life of someone who has one so you can learn more about it!
My professor loved that I put that on one of my fingers. She told me that this is something that comes up a lot in those with terminal illnesses. She said that they talk about how they are losing the opportunity to _____ (fill in the blank here).
It's interesting to me because I never thought of describing loss like that.
One of the kids at the conference was discussing in a breakout session how he lost the chance to be a kid because he was having so many health issues. He couldn't just go out and play because he couldn't walk. He talked about he became depressed and angry.
This got me thinking of the stages of loss.
We learned about this in class as well!
You see people talk about this a lot when someone gets diagnosed with cancer or a terminal illness.
They go through the stages of loss.
This also applies to any form of loss.
Those who are diagnosed later in life experience this more than those who are diagnosed when they are younger.
I do believe both go through the stages of loss at some point in their lives though.
It's harder for those who get diagnosed at an earlier age because their whole world is ripped out from under them. They now have to change everything and we all know how much we love change!
Those who are diagnosed at a young age grow up with it. It becomes just another thing they have to deal with, just another part of life.
Getting diagnosed, losing someone, or experiencing any type of loss is difficult to go through.
That's why understanding the different stages of loss and grief make it easier, at least for me, to get a grip on the situation.
Knowing where you're at, makes it easier to find things that will help.
I think I met a lot of people at the conference who were in the bargaining and acceptance stage.
I know I go back and forth between the two all the time.
What's the meaning in all of this?
Why do I have this?
How can I reach out to others like me?
Heck, I have a blog to tell my story.
Moving on and realizing that I can be more than my disease.
How can I help others?
What's next, how can I use what I've learned?
All of these questions and thoughts were being discussed during the young adult sessions.
I was able to hear that others really felt the same and understood what it was like to lose something that we never really had to begin with.
I might have lost the chance to be a normal kid, but I've gained so much more than I would have had I lived a normal life.
Thursday, August 6, 2015
We're all Buzzed
And before you ask, no, it's not the good kind of buzz.
I didn't think about describing pain like this until after the conference. It's really the perfect example of what we feel like on a day to day basis.
I can't take credit for this thought though. It was said by Ana Villafane during one of the breakout sessions and everybody in the room related to it.
She was saying how we all have a daily buzz, like a certain of level of pain we deal with daily. Then, during that day or when you're having a bad day there will be a spike of pain.
Imagine a heart rate line if you're a visual person.
Not many people seem to realize that this is a daily occurrence. While we may look okay and act okay, our bodies may not feel okay.
We are really good actors!
Or at least try to be.
So we are constantly dealing with this buzz of pain that never seems to go away.
At this point in my life I don't really notice the buzz anymore. It's like the sound of the air conditioner, it becomes background noise that you don't pay attention to anymore.
That's just me though.
Everybody is different.
I do believe that we have higher pain tolerances because of the constant buzz that we deal with.
I'm pretty proud of my high pain tolerance!
You've gotta find the bright side somewhere, right?!
It's the spikes that are hard to deal with.
When you get so used to the idea of "normal" being a certain level of pain that the change catches you off guard.
You know you can handle it because you've done it before, but it's almost like you've got the feeling of "I have to deal with pain on a daily basis, why do I have to deal with hurting even more".
Bad days are called bad days for a reason.
I remember about 2 or 3 years ago we were changing my meds because I had plateaued and it just wasn't helping anymore. I flared constantly. My buzz wasn't a buzz, it had flipped and I was just spikes all the time.
I can remember one day just breaking down and having a total temper tantrum at 21 years old.
I was sitting on the floor in my closet because I didn't want my roommates to hear me crying. I probably couldn't even help myself get up off the floor anyway lol!
I slapped my closet door because I just wanted to feel something other than the pain I was feeling at that moment.
Maybe it was the idea or curiosity of whether I could feel more pain than what I was experiencing.
I'm not sure.
I know it probably doesn't make sense to you, or it might.
But when you have moments like that where you feel pain all the time, you just need something to reassure yourself that yes, you are normal.
Don't worry, my hand was fine lol!
I didn't even have the strength to slap it hard which is the funny part!
Half the time it's not the pain that gets you.
It's the emotions associated with the pain.
The weakness, the feeling that this will never go away, the "why me", and the thought of just giving up.
If the pain wasn't enough, you've got the mind games that come along with it.
I hate the saying, "mind over matter".
No matter what I'm thinking, what I tell myself, or what I believe...the pain is still going to be there.
I could be having all of those negative thoughts and it won't change the amount of pain I'm in.
It can make me feel like crap.
It can make me depressed.
But it doesn't make the pain go away.
The same goes for positive thoughts, which I do my best to think!
These thoughts are better! When you're having a bad day it's easy to let the negative thoughts take over. But you have to let the angel beat the devil on you shoulder.
"You are strong"
"You can handle this"
"Don't give up"
While these are wonderful and the counselor in me applauds all of us for thinking of them, it's not going to change the amount of pain we're in.
That's why I dislike "mind over matter".
So you have the emotions, the mind games that come with that, and then the pain.
That's what you get on a bad day.
Plus whatever you have going on in your life at that time lol!
It sounds fun doesn't it?
Don't think that every flare or spike is like that though.
Some days aren't as bad as others.
I gave you an example of a really bad day just so you can see where our minds might wander from time to time.
Some days when we spike we just might be in a crappy mood!
In which case we just act like moody teenagers lol!
Just understand that we do, for the most part, have a constant level of pain that we experience.
We are buzzed all day everyday ;)
I didn't think about describing pain like this until after the conference. It's really the perfect example of what we feel like on a day to day basis.
I can't take credit for this thought though. It was said by Ana Villafane during one of the breakout sessions and everybody in the room related to it.
She was saying how we all have a daily buzz, like a certain of level of pain we deal with daily. Then, during that day or when you're having a bad day there will be a spike of pain.
Imagine a heart rate line if you're a visual person.
Not many people seem to realize that this is a daily occurrence. While we may look okay and act okay, our bodies may not feel okay.
We are really good actors!
Or at least try to be.
So we are constantly dealing with this buzz of pain that never seems to go away.
At this point in my life I don't really notice the buzz anymore. It's like the sound of the air conditioner, it becomes background noise that you don't pay attention to anymore.
That's just me though.
Everybody is different.
I do believe that we have higher pain tolerances because of the constant buzz that we deal with.
I'm pretty proud of my high pain tolerance!
You've gotta find the bright side somewhere, right?!
It's the spikes that are hard to deal with.
When you get so used to the idea of "normal" being a certain level of pain that the change catches you off guard.
You know you can handle it because you've done it before, but it's almost like you've got the feeling of "I have to deal with pain on a daily basis, why do I have to deal with hurting even more".
Bad days are called bad days for a reason.
I remember about 2 or 3 years ago we were changing my meds because I had plateaued and it just wasn't helping anymore. I flared constantly. My buzz wasn't a buzz, it had flipped and I was just spikes all the time.
I can remember one day just breaking down and having a total temper tantrum at 21 years old.
I was sitting on the floor in my closet because I didn't want my roommates to hear me crying. I probably couldn't even help myself get up off the floor anyway lol!
I slapped my closet door because I just wanted to feel something other than the pain I was feeling at that moment.
Maybe it was the idea or curiosity of whether I could feel more pain than what I was experiencing.
I'm not sure.
I know it probably doesn't make sense to you, or it might.
But when you have moments like that where you feel pain all the time, you just need something to reassure yourself that yes, you are normal.
Don't worry, my hand was fine lol!
I didn't even have the strength to slap it hard which is the funny part!
Half the time it's not the pain that gets you.
It's the emotions associated with the pain.
The weakness, the feeling that this will never go away, the "why me", and the thought of just giving up.
If the pain wasn't enough, you've got the mind games that come along with it.
I hate the saying, "mind over matter".
No matter what I'm thinking, what I tell myself, or what I believe...the pain is still going to be there.
I could be having all of those negative thoughts and it won't change the amount of pain I'm in.
It can make me feel like crap.
It can make me depressed.
But it doesn't make the pain go away.
The same goes for positive thoughts, which I do my best to think!
These thoughts are better! When you're having a bad day it's easy to let the negative thoughts take over. But you have to let the angel beat the devil on you shoulder.
"You are strong"
"You can handle this"
"Don't give up"
While these are wonderful and the counselor in me applauds all of us for thinking of them, it's not going to change the amount of pain we're in.
That's why I dislike "mind over matter".
So you have the emotions, the mind games that come with that, and then the pain.
That's what you get on a bad day.
Plus whatever you have going on in your life at that time lol!
It sounds fun doesn't it?
Don't think that every flare or spike is like that though.
Some days aren't as bad as others.
I gave you an example of a really bad day just so you can see where our minds might wander from time to time.
Some days when we spike we just might be in a crappy mood!
In which case we just act like moody teenagers lol!
Just understand that we do, for the most part, have a constant level of pain that we experience.
We are buzzed all day everyday ;)
Monday, July 27, 2015
Hope Grows Here
I really didn't know what to expect when it came to the conference.
Sure I had been reading every single email that I got from the foundation, I had looked at the schedule so many times that I knew what was on it, and I was super excited to meet new people.
When the opening session began, I was blown away by every single person there.
Let me set the stage for you:
There were 1700 people there.
700 of those were children.
Every single person there has a story.
That's a lot of people!
That's a ton of stories.
I've shared mine on here and if you go back far enough you'll find it.
But just imagine a room...no...a convention center full of stories just like mine.
It's just crazy.
See when we go through our every day life we tend to be the special ones.
We stick out because we are different (well, to those that know about our arthritis at least).
I like to think of ourselves as unicorns.
But this was like a convention just for unicorns.
How cool is that?!
I love camp because it shows us that we aren't alone and we can share our stories with campers.
This national conference amplifies that feeling by thousands.
You get to talk to people who have been on the same meds as you, who have experienced the exact feelings that you have about nearly everything, you share the same concerns, fears, and guilt.
While we all have this one big huge think that's the same, we are also very different.
We all have different reactions to medications, we have different forms of arthritis, and we are all involved in different levels of the arthritis foundation.
I LOVE this though because we can compare notes on what crazy thing our doctor wants us to try or we can make fun of the fact that our family puts us in bubbles so we don't break but the truth is we are already so messed up!
I really enjoyed learning from the breakout sessions as well. I learned so many cool stats, how I can get more involved, how genetics plays a part, and much more.
If you stay with me, for the next few posts I'll be talking about a lot of cool things that I learned in those sessions.
The theme for camp was "Hope Grows Here". You'll see in the picture below how those who attended put what they hoped for on ribbons. It was amazing some of the things the kids hoped for.
I'm so thankful that I got the chance to meet other young adults, kids, and even parents who traveled from around the country to come.
One of the young adult leaders (shout out Dr. JHo) rode a tandem bike from New York to Orlando in 3 weeks. She has arthritis too by the way,
I could never imagine doing something like that.
I mean I'm sitting here on my couch wishing that places delivered ice cream because I'm too lazy to go get some.
But that's just one example.
There was a lady there who I'll talk about later who was diagnosed at a young age and she's now blind and both of her daughters have been diagnosed. Her husband came in and we had a relationship session where it got pretty serious.
Then we had a cool up and coming actress/Broadway star who not only sang for us, but came to nearly every young adult session and shared her thoughts and stories.
There was a pediatric rheumatologist and even a NASCAR driver who both came in and shared their stories as well.
It's seeing how this disease affects everyone and how we really come together as one to help find ways to bring awareness to it that's truly inspiring.
There were so many people that wanted to come this year but couldn't make it. Because of that, the foundation decided that there will be 2 conferences next year so more people can come.
That's awesome!
Our goal, well at least the young adults group, is to shed light on the fact that young adults want to get involved. We want information, we want to help, and we want more chances to meet others like ourselves.
That's slowly happening thanks to those in leadership at the foundation and the 2 Jenns who helped run the young adults program.
It all starts with someone making noise, sooner or later, someone will hear you.
So if you didn't see my social media sites, here are 2 little trivia facts that are teasers for the next few posts to come.
There are 5 states in the US that do not have pediatric rheumatologists.
How do kids in those states get help? Well if they don't travel to another state, they don't get the help they need. To me, that's uncalled for.
24 states don't consider Arthritis a chronic condition.
So tell me 24 states, what do you consider it?
This needs to change and by advocating together, we're one step closer to changing it.
Thursday, July 16, 2015
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!
Sunday, June 28, 2015
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!
Tuesday, June 9, 2015
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!!!
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!!!
Monday, April 6, 2015
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 :)
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 :)
Sunday, April 5, 2015
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.
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.
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.
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?!
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!
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.
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.
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!
1. 1. Cake
*****
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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!
Thursday, March 19, 2015
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?
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?
Monday, March 9, 2015
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.
*****
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.
Wednesday, February 25, 2015
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
http://www.
http://www.
http://www.kidstogether.org/
http://www.supportforfamilies.
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.
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.
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.
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
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.
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.
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.
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.
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.
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