My First Love

So for those of you who thought this would be about a boy...sorry but not this time lol! We live in too small of a town to be talking about that kinda stuff :)

Sports. That's my first love.
And if you sit down and think about it (which I have a countless number of times), it's really ironic.

Let's give the girl who has the body that's attacking itself all of the athletic genes.

Makes complete sense, doesn't it?
While the whole thing may be filled with irony, I really do hope that I've at least proven myself when it comes down to it.

There are a few reasons why this post is about sports.

The first being that the wonderful team I managed last season, UWF women's basketball is leaving today to go play in their next set of games. They just won the first ever GSC championship for the school last weekend. Working with that team made me realize how much I appreciated sports and missed the feeling of being apart of a team. Good luck Ladies! Bring home another Championship!!

The other reason being that I took my cousin, Layney, to the gym a few weeks ago for volleyball practice and when I walked into Baker School's gym I was overwhelmed with the memories.

The smell. And no, not the sweaty kids smell, but the smell of the gym floor and just the feelings that it brings back.

I think of all the war stories from the games that on any given day, my oldest friend Ariel (she's literally had my back on and off the field and court since preschool) could tell you. Yo- just leave the one out about me chasing the girl from laurel hill after she pushed me...or you pushing me back down when I wanted to go after that pace girl. Let's just only tell the ones when I didn't have a temper.... ;)

And how could I forget running all of those laps around the gym, praying each time Coach Combest wouldn't make us run more.

Then I looked up. Every time I walk in that gym I think that my name should be up there. My name should be written on the banners with all of my teammates.
But it's not.

The last game I ever played was the first one I was allowed to dress out for after I had my bad scare. I begged coach the whole game to just put me in...
She did in the last 30 seconds. And in those 30 seconds, I knew that I would never play like I used to. My body couldn't handle the speed of the game.

Basketball was the first sport I said goodbye to. It was the one I loved more than the others and when my body couldn't take it anymore....I had to leave.

My second love was softball. My dad used to have to carry me over his shoulders after a game because my ankles were too swollen for me to walk.
But I loved it.
I made varsity in the 9th grade and I can remember going to practice with the older girls and wanting to learn all the plays so I could be as good as them. I think I still remember that Britney or Amanda would go to Gracie when coach would yell Green? It's been almost 8 or 9 years since then...my memory is a little rusty.

But The day came though when I realized I couldn't play anymore.
This was a horrible day too. It was my first season back since I had my health scare and I decided I would go ahead and try out.
I did fine with fielding the ball, but then it came time to hit.

I missed every single one.

Coach Carlisle came and pulled me out of class the next day and said that I could be on the team, have a jersey, but I wouldn't be playing.

That hurt.
So I thanked him and told him no. If I couldn't play well, there was no since in me even being on the team.
That would just tick me off more.

Most people have a choice. I did, but I didn't. I chose to give it up so I could live a less painful life, but that decision was one of the hardest I've ever had to make. That decision in itself was more painful than anything I had gone through because giving something up that you love, your first love, is the type of heartbreak you can never get over.

I walked away because I knew it was the right decision.
Do I regret that?
Not every day, but on my good days because I know I could have pushed myself to play, but that would have resulted in another set of problems.

Would that have made me the best player I could be?
Would I have been as good as I was before my health scare?
Both of those answers to that question are no.
And because of that, I had to walk away.

I play sometimes...when I need to think or when I miss it.
Sometimes I find my sweet spot and can hit a few 3's in a row or I just go practice my free throws.
It's been almost a year since I shot a basketball though.
And I still haven't swung a baseball bat since that dreaded softball tryout. I've thrown a ball a few times since then though.

I'll let you know if I can still make a double play when I'm playing second base, I'll really find out when my church group plays it's first intramural game in a few weeks.

Until then, just know that sometimes the hardest decisions have to be made, not for the results at the time, but for the results in the long run.

I'm so thankful that I was blessed with the athletic genes and as much as I would love to go back, I wouldn't trade it for the world. It lead me to cheering, ballroom dancing, and many other things that I would never have thought of trying. Plus, I like to think that when people see that I'm still able to remain active with the diseases that I have, it gives them the courage to be active as well.

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. 

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. 

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! 

The Perfect Fit

I'm about to talk about something that I don't really like to talk about, however, it's something that I can guarantee (100% Kara Guarantee, pinky promise. And I do take those seriously) every person who has had to be put on steroids (prednisone, solymederol, steriod packs, etc.) has dealt with.

Let's talk about weight.

Honestly, I don't know how much I weigh.
I haven't looked at a scale in I don't know how many years.

This isn't because I'm one of those self-conscious girls who can only have so many calories a day because I think I'm fat.

This is because I've been on steroids now for 6+ years and my weight fluctuates constantly depending on how many milligrams I'm taking due to the amount of  pain I'm in.

Could I lose some weight?
Yes.

Do I worry about this on a daily basis?
Heck no. I've got better things to worry about.

So I'm not going to look at my weight and freak out because I'm a little chubby. I'm a healthy (hahahahaha, that's funny) girl who stays around the same size and I'm totally ok with that.

I would love to lose some weight and I do every now and then, but I know it's going to come back the next time I flare.

I've been as small as a size 4 since my health got really bad in high school and as big as a size 12.

Right now, I'm an 8.

Yes, I just totally told the world that. But it goes along with the purpose of this post and I said that I would leak my secrets if it  pertained to the story at hand.

I love food. Who doesn't. But those of us who do have autoimmune diseases should be watching what we eat. If we do get overweight, it can be detrimental to our health in more ways than one. A few of my friends are gluten free and I've taken some steps in changing my diet to "Kara-style Gluten it up". I just really like bread and cheese though.

I'm working on it.

So those of you who do know what I'm talking about with the "one week you fit in your 6's then the next week you're a size larger", I'm right there with you.

I have a rough time dealing with upping my steroids to numb the pain or dealing with it so I can stay the same size.

At the end of the day though, I would rather walk and be fat and happy than be skinny and not be able to move a bone in my body.

You've got to find that perfect fit and I'm not talking about the size of your jeans here.
You've got to find that happy balance (strength, courage, bravery, smarts) within yourself, steroids included...or not...depending on how bad you're hurting today.

Don't get me wrong here, I still feel really uncomfortable with my body sometimes. I'm not saying that you'll ever get over that. Especially if you flare as much as I do.

I still have those "princess diaries" moments (don't judge me, it's one of my favorite movies) when sometimes you just look in the mirror and say to yourself, "this is as good as it's gonna get".




But, you're beautiful no matter how many milligrams you're on, what size you're wearing, or how much pain you're in.

What makes you beautiful is how strong you are when you're fighting this disease.

The moment you find that perfect fit is the moment that you will truly feel comfortable with your body.

*Disclaimer note: That last part ^ right there, I'm just really hoping is true lol! Hey now, I'm a 22 year old. I never said I figured it all out yet, just some of it :)

Faith, Trust, and Pixie Dust

There are 3 main things that you need to get through life with an Autoimmune disease.
Those three things are: Faith, Trust, and Pixie Dust.

The first thing you need is Faith.

1. Faith in God (if you don't believe in God then substitute whatever you believe in here).
and
2. Faith in yourself (because yes, you do need to believe that you can fight and overcome this disease in order to get out of bed in the morning).

If you have faith, not only does it make things a lot easier, but it makes life worth living. If you don't believe in something, how do you get through the day? What's your purpose?

For me, I believe in God. I believe that he gave me this disease to use it to help others.
He gave this to me, because he believed that I was strong enough to handle it.

Do I believe that I'm strong enough? Not all the time, I have my bad days and my good days.
You can ask anyone who goes through this that there are days when you want to give up.
But you don't.
Wanna know why?
Because they have faith.

The second thing is Trust.

You need to trust your doctors, your family, and your friends.
You never know if you're going to wake up one morning and need their help getting dressed in the morning or driving you to class.

You need to trust that they are going to be there.
Because they will. They love you and they will do whatever they can to help.

If they don't, I'm here.

You have to trust that the doctors are making the right decision in the choice of medications that they want to try.
You also need to trust your family to tell you their opinions when you need to hear it, specifically when it comes to medications or whether or not they think the doctor you're seeing is a wacko when she walks into the room in what looks like a tutu and no makeup on.

Trust them. They'll be there to catch you when you fall.

Last but not least, you need a little Pixie Dust.

Ok, so it's not legit Pixie dust. If I had some of that wonderful stuff I would be flying around instead of casually limping from place to place.

Let's think of our medicine as pixie dust, it's magical and wonderful at the same time!
I know it's really not as exciting as I'm making it sound (unless you really really know me and have seen me on some of my really painful nights when I take the really good pixie dust), but you need those to walk and move just like you would hypothetically need pixie dust to fly.

So, it all works out in the end.

Just remember, all you need is a little Faith, Trust, and Pixie Dust :)

Just say No

You've always been told growing up to just say "no" to drugs.

This post isn't about that. 

Although, do say "no" to drugs (unless it's prescribed drugs to help you walk, then go ahead and take those!)

I'm going to tell you something important about those with autoimmune diseases:

It takes us twice the amount of energy and strength that it takes you (a normal human being) to make it through the day. 

With that being said, it takes us twice the amount of time to recooperate from daily activites, or longer, depending on how much we exerted ourselves that day. 

It's important to understand that when we say "no" to something, it means that we don't have enough energy to do that something (unless that person just doesn't want to do it). 

With me, I like to make people happy. I like to see people smile, so if they ask me to do something, I'll do whatever I can possible to help them out or join them. 

But when I say "no", I mean it. Not because I don't want to hangout or help you, but it's because I have no more energy left to give. 

Those of you that are reading this and don't have an autoimmune disease, don't take this as a, "oh I need to stop asking them to help or to do things". 

No. Don't do that. Ask anyway, but if they say "no", then understand that it could possibly be because they are exhausted. 

Also, don't confuse this with them just being a lazy person. 

I'll be the first one to go put on my sweats and hoodie and lay on the couch. Half of that is because I like to relax. The other half of that is because I'm so worn out from the day.

So it's totally ok to say "no" to things if you're not feeling it. 

No one is gonna blame you.

No one is gonna be mad at you. 

And if they are, send them to me because they really have no right to get mad.

The way I like to see it is that we only have so much energy and we are gonna put that into the things that are most important to us. We have to choose what those important things are and some days, certain activites are more important than others.

Sometimes, if we know we have something big coming up or something stressful, we need to save our strength and energy for that. 

It's a game of chance every single day. 

You never know what you're gonna get, how you're gonna feel, or how far you can push yourself.

The secret to winning?

The day I figure that out, I'll let you know. 

I can tell you to:

Just keep you're head up 

and

Don't waste your strength and energy on people or things that don't provide a positive outcome for you. 

If you do those two things, you'll be just fine :)