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 ;)