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 :)

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.

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 ;)

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.

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!

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! 

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!!!