Tuesday, February 25, 2014

The Invisible Girl

No, this blog post isn't about the Fantastic Four...sorry to get your hopes up.
I'm more of a Spiderman and X-men girl myself, however being invisible is the topic of the day. 

This isn't a post about "nobody seeing who you truly are" or "how you feel like a fly on the wall" or any topic along those lines. 

This is about having an invisible disability. 

For those of you who don't know....I have one of these. 

You're probably thinking, "oh my gosh she has talked about having this one thing for how many weeks now and she's going to say she has another one?!"

Well no, but yeah I kind of am!

On the street you can walk right past me and think that I'm a normal twenty-something looking girl. You can talk to me and I sound normal, speak normal, and listen all like a normal human being would. 

But as we've covered, I'm not normal (I secretly have mutant powers that allow me to walk through walls)

No, not really...but name that superhero and I'll give you a high five!
I have an invisible disability. Because you think I'm normal, doesn't mean that I am. 

Invisible Disability is an umbrella term. Invisible disabilities are certain kinds of disabilities that are not immediately apparent to others (It's all in the name)

I've never really come across any type of negative stigma...for the most part...but I feel that's because I come from such a small town where everyone knew me already and saw exactly what I was going through. I didn't have to explain. 

The rest of the world won't be so willing to believe me. 

It's sad that this is something that people face every day and I've yet to even hit the tip of the iceberg with it. 

I was asked in my death class last week (it's not an actual death class, it's called loss and bereavement, but death class sounds much more interesting) if I had a handicap pass. I used to have one and recently actually got one again.

Disclaimer note: The use of the pass is only for really sick days when I don't feel like walking half a mile from the parking lot to the building. Those who know me, know that I WILL NOT take advantage of this pass. If I'm capable of walking, I will walk. 

My answer was no, because at the time I didn't have one. The teacher then went on to discuss how I will get certain looks and how do I feel about that and when it happens she wants to know if my thoughts and feelings have changed. 

Well, today was day 1 with the pass and yes....I used it. 

No looks were given. 

I guess I'll just have to wait and see what happens.

For those of you curious as to what my answer was for her, I told her that the looks won't bother me. I have a reason for this pass and as long as the ones closest to me understand, then I'm ok with the dirty looks that I'll be getting. I don't judge others when they use their handicap pass, I don't have the time to sit there and wonder why they even have one...nor does it matter. 

It's not just the handicap passes though, it's missed days from school and work, it's not being social, and it's people not believing others have problems when they really do.

Now, it's really hard deciphering which person has the invisible disability and which person just wants attention. 

That one is up for you to decide. 

I'll give you a hint though. 
Which person is still going out of their way to do things even though they are in pain?
Which person still works harder no matter the circumstances?
Which person complains more than the other?

You answer those three questions and you'll figure it out. 

The point of this post is for you to understand that this is a thing. 
People who have visible disabilities are discriminated against and that's a difficult and wrong thing.
However, people who have invisible disabilities are discriminated against as well....but you don't hear about those stories, do you? 

I was sent this chart a while back and I love it! It's so true and it's so funny, I think you will enjoy it :)

For my sake, don't go assuming people are only using the handicap spots because they are lazy. Maybe, just maybe, they might be invisible. 

Sunday, February 16, 2014

I like to Move it, Move it...straight to my bed.

My weekend activities sparked a great topic that I should touch on. My wonderful friend Heather came to see my this weekend and we decided to "go out". 

Those of you who know me...know I'm in bed by like 10 every night. 
I don't "go out" and if I do it's like to dinner or a movie and I'm home in my pj's at a decent hour. 

I've just never had the urge to go be a party girl, thank goodness, but having RA has made it to where it's always impossible to get me to go out. 

Side note to show how true this is: Heather had wanted to go out, but didn't bring clothes because she didn't think I would actually say yes...so we had a spur of the moment shopping trip to go get her some clothes.

My friends know me well. 

If I do go out, I'm the DD so the others can have a good time and drink. 
Don't get me wrong, I don't mind being the DD.
I have pills I would rather take than shots of lemon drop whatever. 

It's always a pros and cons list when it comes to this sort of thing though. 
A normal girl would only have to decide what she wanted to wear and then she would hit the town in a matter of seconds. 

For me and others who may or may not be experiencing similar issues it's like this:
1. Ok, how late are we gonna be out because if I don't get enough sleep...I get sick.  
2. What am I going to wear? Heels mean I can't walk the next day, but flats mean that no one is gonna dance with me (shout out heather lol!)
3. Am I drinking tonight, if so is this yummy alcoholic beverage worth not taking my meds (you can't drink and take pills that make you not hurt at the same time...read the pill bottle guys).
4. Am I gonna dance or just people watch? Dancing means a workout which means body is exhausted tomorrow, but it's so much fun and I can totally show off my cool dance moves that I wish I had. 

There are just a lot of things to think about! 

But when Heather came this weekend, I manned up (well, you know what I mean) and I decided we would go out since I've never actually ventured out in Tallahassee before. 

We had so much fun! It was something that I needed and I'm so glad she was the one who talked me into it.

An important fact for those like me: 
You can have one drink at the beginning of the night, dance as much as you want, and still take your pills that night. 
Just be sure that you separate the time by a few hours and drink plenty of water. 
I can't promise you that your feet won't hurt if you wear heels (stupid mistake on my part, but I really wanted to dance)...mine are still killing me and it's 2 days later.

But hey, at least you had fun and looked good doing it, right?! 

So we also met up with a few of our other friends and we were dancing and having a great time! 
Here's me....dancing and having a great time..

And yes....I was told I was the whitest girl in the room. 
And yes...I'm pretty sure Heather and Liz gave me that look.

The point of this post is to remind myself and others that even if you love being in your pjs watching netflix and Idina Menzel YouTube videos because you want to avoid the decisions of drinking and dancing....it
doesn't mean that you don't deserve to let loose and get a little crazy every now and then!

For me, that was having a drink and dancing with my friends until we were exhausted (ok, it was probably just me on that last one) and walking down the street with our heels in our hands (just kidding, we didn't actually do that......). 

You aren't normal. I'm not normal. But, I like to think I am from time to time and there's nothing wrong with that. 

Friday, February 7, 2014

Just a spoonful of sugar

Contrary to popular belief, I'm sorry Mary, but a spoonful of sugar Does not help the medicine go down.

But before I get started on my latest post I want to apologize for being MIA.  It's not that I haven't had anything to write about, because I have a whole list, but Life stresses have gotten in the way of me writing.

Buuuttt I'm baaack!

So now that I've gotten the wonderful Mary poppins song in your head (this is my least favorite song in the entire world) let's talk about medicine.

Let me start by saying,

Hi my name is Kara and I'm an addict
(Y'all reply with Hi Kara) 

Now before you jump 2 spaces and pass go, hold on and let me explain what I mean by this.

I've been taking medicine for as long as I can remember. I became a pro pill swallower by the time I was 12 (that's totally a real thing) and if you think about it, my body has never gone more than 3 months without medicine in it.

With that being said, yes I'm an addict. But not because I need it, but because my body needs it.

I've tested this theory before. I know that I can't get off the 1 measly milligram of prednisone because if I do, I literally cannot function. My body decides it can't walk or move without it. 

That's what I mean when I say I'm an addict. My body needs to the medicine for my disease in order to survive.

Now some of you may be thinking, "oh this is all in her head" and you know, you have the right to believe that. 

But you're wrong. 

Sorry bout it.

That's my number one pet peeve. Never tell me "it's in your head"
It's not. 

I'm not going to go into that rant right now, I'll save that for a later post :)

The past few weeks I've been sick and I've been trying to avoid being sick. I've been on an antibiotic for a week and then tamiflu for 10 days to avoid the flu that's going around. 

Because of this, I've had to get off my shot.
I'm going on 3 weeks without the major medicine that helps me function.
How I'm still moving is unknown to me.

Actually, I know how. I've upped my prednisone. That's how I've survived. Losing one important medication means upping the other, so to say. 
You know it's bad when your doctor asks how you've survived this long and when you tell her how, she's still in awe. 

It amazes me the people that are on one or two meds for their disease because here I am sitting there with my grandma pill case popping 12+ pills a day and they don't even have to carry one of those around.

I realize they may not be as "deteriorated" as I am, but when you're allergic to every single thing out there except the one you're on and you can't take that because you're on a pill to help you get over a double ear infection....it's kind of annoying. 

I will say that some medicines knock you down before they build you back up and it would be crazy for me not to mention it since we're on the topic.

I've taken 2 rounds of chemo before because my counts were so low. It knocked me to my knees before I could get better. The same goes for friends I have out there and my papa.

The strongest person I know is being knocked down constantly by a medication that we all believe will help him. And you know what? He gets back up each and every time to fight for it because of that belief. 

So far it has been helping, thank goodness.

But that's a normal circumstance for people who take medications. We are constantly fighting the battle to keep our health in check and the medicines we take are our little toy soldiers. 

That was totally a corny example, but it painted the picture for you.

Sugar does not help the medicine go down. The belief that the medicine is going to work in doing it's job with the added benefit of actually taking the medicine...that's what helps the medicine go down in the most delightful way. 

You're going to be singing that song the rest of the night now.

You're welcome!