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 :)

Doctor Kara

I was talking to my friend the other day (Shout out to Elise!) and we were discussing our medications, IV's, and shots. Yes, this is "normal" talk for girls who go through this on a daily basis. She mentioned that I should discuss a certain topic on my new blog and I thought it would be a great idea!

Here's the topic:
There's a lot of inconsistencies when it comes to doctors, medications, parents, and what everyone thinks is best for you and what you should take to help you. But at the end of the day, you're the doctor and what you/your parents think is best is what should be done.

Yes, they are the professionals.
Yes, they have a doctorate in ____(enter your choice of specialization here)

But YOU are the one who has to live this life.
Not them.

YOU are the one who has to go through countless amounts of medicines and trials of different drugs, and getting your blood drawn to make sure they aren't killing you (that's not a road you wanna go down), and just pain in general.

Don't get me wrong, I trust their decision and 90% of the time, I follow it.

But if you're telling me to up my steroids when I just brought it down (steroids help with pain management, but make you gain tons of weight and can really be bad for your heart), I'm probably not going to listen to you. I'll take the pain instead.

Yes, I like to play doctor and boy have I gotten good at it.

They want you to try this drug and that drug or if something isn't working for you and they don't listen...ugh.

I'm a rare case. I'm allergic to EVERY drug out there, with the exception of the one I'm on. So with me it's kind of a hit and miss thing and normally, I'll push my limits for just about everything.

But when my liver tests come back horrible and we've stayed on this drug as long as my liver can take it, I've got to get off. I'm not going to see what happens if we switch meds and add this and take this away.
No. Not happening.
I'll be your guinea pig any day of the week, but when I've pushed my limits, I'm done. I would rather push through the pain that my body causes me than try and test which drug works and possibly kill my liver instead.

I have a losing deck of cards here, but which one is gonna hurt me less?

The other thing I like to do when I play doctor is like I said above, I like to push my limits. But this is in the sense of pushing my body limits. The doctors like to say, "just walk, try light exercise". Well, I like sports. I like contact sports to be exact. So I'm gonna be running, shooting basketball, throwing things, and giving it my 100%. It's what I do.
Will I hurt the next morning? Of course.
Do my doctors like when I do this? No, but I enjoy it and that's all that matters.
Will I regret this decision? Never.

Some of the best times in my life are when I'm giving it all I've got. I won't be able to move a muscle in my body the next day, but I lived, I had fun, and I won't ever regret doing that.

One day, I won't be able to walk, to move, to do the things I love. And if you have something like I do, you may not be able to do that as well.

So go have fun now. Go run a 5k mud run because you want to. If you feel like taking a risk, then do it! If you don't, especially if it comes to medicine, don't take it. Be your own doctor and look out for what's best for you. Find other options, other doctors, other medicines.

But most importantly,
Do what's best for you while you still can.

It all comes to an end. (Knock on Wood)

I decided to go home this weekend thinking that if I did maybe my flare-up would get better or go away and I could get some rest. 

That didn't happen.

So it started Friday when my brother came to meet me where I live so we could ride together home (he had already driven 2 hours, so it was only fair that I did). 

I don't know if you know this, but I quickly figured out that when having a flare-up, don't drive 2 hours. 

My body was exhausted by the time we reached our house.

Exhausted from doing what?! 

Driving. 

And not the traffic jam, horns beeping, in and out type driving. Just cruising 80 mph down the interstate. 

And I was exhausted. 

I went to bed at 7:30 that night...and every night that I was home.

Saturday I actually went out with the family but I think I cried about 15 times that day (silently to myself, of course) wanting to go home and just get in my pjs and crawl in bed.

Once again, I went to bed at 7:30.

Sunday was the day things started happening. And by happening, I mean I laid in bed all day long until my mother came to check on me. Only then did she realize that I was running a 102 fever and had been presenting flu symptoms for a week now.

We went to emergicare and needless to say, I was negative for the flu...but I had a double ear infection, a fever that wouldn't go away, and the WORST flare-up I've had in 2 years (the total running time for it being 2 weeks and a day).

Let me fill you in a little bit.

1. I can't get the flu shot because of the medications I'm on. But if you have an autoimmune disease or are new to the club, you need to get a shot. Because A: you will get the flu if you don't get one and B: you probably might get the flu if you do. Welcome to the crappy immune system club, meetings are once a month in the Emergency room of your local hospital! (see, that's a joke there because ER's have the most germs and we really don't have immune systems lol! <- yes, I just laughed at my own joke). 

2. If you are sick and want to "rest" don't go home. You won't rest. Stay where you currently live, lock your doors, and watch netflix all day. 

3. You're mother will always, no matter what take care of you....even if she swears on everyone's lives that you have the flu when you don't....she will still take care of you. 

4. Don't drive when you're sick. (this should be a no brainer, kinda like the cutting the lemon when your hands don't work...but I tend to learn the hard way)

and last but not least....

5. If you want to know what a really really bad flare-up feels like...it feels like the flu with a dash of the tin man-ness, and a splash of "literally not being able to lift yourself out of bed because you have bricks tied to your body". That's really the best description I can give you. The whole, "pain scale" and "is it throbbing pain or sharp pain" crap just doesn't cut it for me.

In the end, I got an antibiotic and my fever hasn't come back. My flare-up is on it's way out the door and on the next bus out of town (knock on wood). 

Good Riddance. 

You are strong

So if you've been reading, you know that I've been flaring the past few days. Well, yesterday was a first for me.

I went to class (grad school, mind you) with no makeup on and in sweats. 

I realized when I woke up that I wasn't going to be able to move much, but I decided to get in the shower and try anyway.

If I could have my own tv show, it would be hilarious! Have you ever seen an animal with no hands try and pick up something? That was me in the shower. 

Wait, it gets better.

I then make my way down the Stairs cursing the choice I made to live in a townhouse that has 2 floors and I think, "ok, I'll make my water bottle for the day and put some lemon in it". 

Knowing I can't move my hands, let me go pick up a knife and cut something.

I imagine that you already know what's about to happen....

Yes, I sliced my thumb open. But I didn't realize I had done it (I was concentrating on not thinking about the pain in my hands) until I saw all the blood all over the lemon that I had just purchased. By this point it was 8:30 in the morning and I was pissed. 

5 bandaids and 1 really bloody lemon later, I headed back up to my room to get my school stuff.

Why didn't I think to bring it down with me, I have no earthly idea. 

I'm a very stubborn person already, but when I flare that multiples by 10. So throughout the day, knowing that I look like crap and feel like it too, I wouldn't ask for help. I also was a smart alek and when people would ask if I didn't feel good, I would reply with a, "oh no, I'm totally going to workout after this"

Everyone could tell something was wrong. But this is normal to me and not to them. I had to remind myself of that. All of my friends here had never seen me this bad before. I'm always very conscious of things I say when I'm flaring, because I can lose my temper easily, that being said....I do my best to be Postive. So when they asked if I needed help or how I was, it was always a "thank you, but I got it" or "I'm alright, it'll be better soon". 

Between classes we had to walk to our other building and what normally takes a 10 minute walk took me 20. All of my friends walked the same pace as me. It's moments like that, when they don't have a clue what you're going through, when they can't imagine the pain you're in, but you have a smile on your face because they do something as simple as that...that makes everything worth it. Every bit of pain disappears because they help in ways that they don't realize they're helping and they make you smile. 

It's not the things they say or help you do. It's the way they make you laugh and smile that makes you realize that you are strong. 

You are unbelievably strong.