Children's Mercy Hospital

Over the past two years I have gained knowledge concerning APS, and the one place that helped me the most was Children's Mercy Hospital in Kansas.

There are seven Children's Mercy Hospitals in Kansas City, KS and MO.

I frequently went to Children's Mercy, Adele Hall Campus on Gillham Rd in Kansas City, MO to visit Dr. Cara Hoffart and her amazing staff.

       

At Children's I received help from the Pain Management staff, I can remember that day like it was yesterday. I was thrilled to know what exactly was wrong with my body, I figured out quickly that my journey will be a long difficult road ahead.

One of the many papers we received that day I was diagnosed was the Treatment Guidelines for my family to understand what I was going through and how to treat it. 

The staff I encountered in the few visits I went to changed my life, and I am forever thankful for them helping me learn how to regain control of my life again.

Getting Back on Track

In my last blog post I mentioned that I have recently become sick, which has put a damper on my journey. Everyday has it's challenges, and these past three weeks have definitely been a struggle.

I have been having problems with my tonsils being the size of huge grapes that consume my throat. With that being said, I did not want to exercise. All I wanted to do was sleep, but I did manage to go to class and do my homework.

When I wasn't doing school stuff I was in bed, that caused a lot of stiffness in my body that I am still paying for.

Of course that sounds crazy, but if I stay in bed I only hurt myself by not moving around, so I am still paying for all of those naps. I did need it at the time, but now that I have back tracked I have to get things together and work extra hard to feel better.

I say work extra hard, meaning by accomplishing all of my school work, going to the gym, massaging my body parts that are in pain, and try to relax when I have time. But when does a college student have time, right?

The moral of this story, when life kicks you while you're down just get back up and keeping fighting through! It'll all be worth it in the end, I promise.

Managing Time is the Key

If you have APS, managing everyday of your life is crucial. I'm not saying everyone else's lives aren't busy, but we have our daily lives plus working in time to take care of ourselves. Everyday we have to go work out, try to reduce stress, and we also need to make time to massage our body if we're in pain.

As a freshman college student I have taken on a lot of responsibilities in the last few months and has put my APS out of wack. Trying to juggle going to class, homework, my health, my APS, and a social life is a lot to put on one plate. At first I didn't have too much to worry about, but then things got busy and I got sick..

Even when I am sick I have to manage my time and make sure I get everything done. Which this can be very stressful because when I'm sick all I want to do is sleep. When I sleep a lot, I tend to become extremely stiff and cranky!

It might sound easy to avoid a few of those problems by not getting sick, but let's face it no one can dodge that bullet.

Now that I am getting over the sickness I have to catch up on all of the homework I have put off. And I decided to spend all day Saturday doing homework in my bed. Bad idea. I thought my neck, back, and hips were stiff before.. I was wrong!

I did a bad job at managing my time this past week, and as you can read, I am paying for it now. This is a learning process for anyone with APS.

"It's Just in Your Head"

Everyday I struggle to get out of bed, I struggle to sit still in class, I struggle to stay on task, and like I have said before my chronic pain is NOT curable. Patients with APS or any chronic pain conditions have to deal with it everyday for the rest of their life because sadly it will probably never go away.

I have mentioned before that I have had chronic pain since I was eleven years old, and I am currently only eighteen. So being told that I will have to deal with this pain the rest of my life is impaling. Almost my whole lifespan of being in pain sounds terrible.

But what is even worse is most people don't even realize there is actually something wrong, APS is a condition that doesn't have physical appearances of pain. So when you see someone who looks completely normal that doesn't mean they aren't in pain. Chronic pain is very different, you can't see what is wrong, and most of the time if you ask someone how their pain is that day they won't truly tell you how they feel.

For instances, whenever someone would ask me how I felt that day; I was embarrassed because I didn't want to worry people or even annoy them with the sob story of always being in pain.

Chronic pain is real and a hard process to overcome for anyone of any age. Even though, I look healthy for the most part; you can't see the daily pain I go through. I ask all of my readers, that are not struggling with chronic pain, to try to understand that just because you don't see physical problems doesn't mean we are faking it.

Growing up, sometimes, children like to fake being sick to stay home from school. But when you are stuck in bed unable to move for days at a time.. There is something more going on than just a lazy child, and much more than the pain is "just in your head."

Please, try to understand that we have to push ourselves to do simple tasks that seem easy to a healthy person.

What is sleep?

Sleep can be difficult sometimes, this picture came from getreal4health.com

Sleep can be hard to come by some days because of being uncomfortable. I personally have a hard time sleeping because I can't sit/lay still for too long or else I get stiff. Even during the day I have to constantly be moving or I will have pain flairs.

When you sleep, laying still is normal but if that causes pain what is there to do? I have found that using a neck supporting pillow helps a lot. With my neck supported I wake up with less pain and I can function more in the morning.

Everyday I am constantly popping my fingers, neck, back, hips, ankles, you name it and I probably pop it! So sleeping with the neck pillow, for some odd reason, it helps me reduce pain.

As I have said before in a post, every person's APS and treatment is unique. Everyone affected has to find what works for them and just do it. No matter how crazy you might look sleeping with a neck pillow or massaging your skin in public, just do it.

Whatever works for you is what you need to do to control your pain so you can sleep.