Preparing To Take Control

Life is about learning. I love experiencing new things, but I often find that I learn the most from reflecting on my past experiences. Especially those that didn’t go so smoothly. I learn best, and fastest, from my mistakes. My second trip to the ER and subsequent hospital stay was no different. I knew what I was in for this time so I came prepared. I wasn’t in a state of panic wondering what was going on with my body. I knew what was happening, the main difference being this time it was happening more inside my brain than my spinal cord. While I was definitely scared and concerned that my body was going haywire again, I felt more frustrated and angry than anything else. As I packed my bags for the hospital I cursed my body for betraying me again; and so soon after we had just started getting along again! I thought that all the hard work I had put in during my recovery would be rewarded by my body; but nope! My body was deceiving me again and there was nothing I could do about it.

As I paced around my house, trying to find the things I needed to pack I was alternating between cursing and crying. This is another one of those moments in life forever ingrained in my memory in minute detail. It was just a week or so before that I was telling myself that I would be one of the lucky ones; no more relapses for me again any time soon! And it wasn’t like I was just blowing smoke up my own ass either; the doctors and the MRI images agreed with me! But it was during this time, packing for hospital admission Round 2, that I think I truly realized I had MS and what that meant for my future. I was starting to realize that my MS was aggressive, permanent and that I needed to figure out a way to deal with it ASAP before any more damage was done. Knowing I had a very difficult road ahead of me full of unpredictable twists and turns, I wanted to be ready for anything. However, I was attempting to pack for an adventure I was completely unprepared to take. My first relapse made me lose control of my body, this second relapse made me feel like I was losing control over my mind. MS was dictating my life and I was just along for the ride; or so it felt.

 

On the bright side, I finally found a feeling associated with my MS that I had experienced before  – feeling completely out of control – and therefore I knew how to attempt to address it! Phew! Anyone who has had any level of life experience has probably felt out of control at some point, right?!?! I know I have more than a few hundred times. Whenever this happens it’s usually a major life issue that no matter how hard I try, or think, or plan, or analyze in that moment there is no immediate solution I can come to that will make me feel like I have taken back the control. It’s a fact of life really. Like they say, “Rome wasn’t built in day.” The solutions to life’s major issues don’t appear over night. Since I couldn’t “take control” of the overarching issue of my MS I decided to do it on a smaller scale instead.

After my initial pity party of cursing, crying, and ranting around my house like a crazy person,  I took control by packing and preparing as well as I could for my hospital stay. All of a sudden I went from a wildly frantic emotional nutcase to a relatively calm human being making a packing list and putting together a few bags in less than a half hour. By the time I was in the car headed to the ER, I was joking that I felt like Piper from Orange Is the New Black being carted off to prison. Thankfully I only had to stay a few days and not a few years!

When I went to the ER the first time I brought my cell phone, a book I was halfway through reading, and my toothbrush. At that time I thought this WAS prepared and given what I had learned from my past experiences with emergency rooms (which was very little as I was a normal healthy 29 year old) I was anticipating likely waiting several hours and being sent home sometime that next day; I really only brought the toothbrush because we left the house at 7:00 p.m. and I wasn’t SOOO unrealistic that I thought I’d be home in time for bed. Never in a million years did I think I’d be there for days! So this time I actually DID come prepared. I spent way too many hours bored with my own thoughts that first time and I wasn’t going to do that again. Not after all the crazy thoughts I was having in just the short time I spent packing. Being alone with my “what if” and “what now” thoughts was not a place I wanted to stay very long. I arrived at the hospital prepared to keep myself occupied. Very occupied. 

When I checked in with the registration nurse she looked at me a little funny. Yes mam, I brought a large duffel bag, a carry on travel sized tote bag full of stuff AND a big purse that most people would probably consider a small suitcase. She chuckled a bit and told me not to worry, that the wait time today was not too long. I kind of laughed back to her. She thought I brought all that stuff just to entertain me while I waited?!? I wasn’t going to take the time to explain to her that this was not my first rodeo; I knew I wasn’t leaving this hospital for days. While the ER wait time may not be too long (which I should add that her and I have VERY different definitions of “too long”), I knew the ultimate determination of the ER doctor and attending neurologist would be to admit me for IV steroid treatments. The only thing I didn’t know was exactly how many days I’d be stuck there. But before I could get up to the neurology floor, I would have to sit in the ER waiting room anywhere from 1-8 hours. Not too long, right?!?

Inside my giant tote bag was my ER survival kit. You may want to take note as these items will come in handy the next time you are trapped in the ominous waiting room. Save yourself from making the ER newbie mistakes that I made! 

• Phone Charger: If you remember only one thing this would be it. Mostly because you can do a million things on your phone these days and everyone knows you bring your cell phone everywhere you go already!
• Tylenol: The amount of screaming children in the waiting room is insane. You will swear every child in your city/town got sick today and is here too.
• Headphones: After you pop your Tylenol you will want to put these on to drown out the screaming children and/or whining of the sick adults. Often the whining of the adults is more annoying. 
• Blanket: I swear hospitals don’t believe in heat. It’s like they hope you just leave before you freeze to death in the waiting room so they can cut down on patients. In the event you are lucky enough to land yourself in a hospital that does believe in heat, your blanket can be folded up to double as a pillow because no way in hell are you going to lay your face down on any surface in that waiting room. Gross! 
• Face Mask: The majority of people in the waiting room are there because they are sick AND contagious. This is where it pays to have an MS exacerbation be the reason you are there; because contrary to some idiotic myth MS is NOT contagious! People will look at you wearing a mask and think that YOU are infected but in reality it is THEIR germs you are afraid of. Extra Bonus: people will sit anywhere else but next to you, the mask wearer, and you will have plenty of room to yourself while everyone else is crowded on top of each other! (Note – this tactic also works great on airplanes!)
• Snacks: Being in the ER is annoying enough. Add to that being hangry and you (and the people around you) are in for a disaster of a time. Plus, being the one with snacks usually makes you the most popular person in the room! After several hours aren’t you going to be bored of checking your phone a million times or whatever other technology device you brought? Bust out your snacks and offer them to an interesting looking person next to you and viola insta-friend!! Nothing passes the time faster than meeting someone new and having interesting conversation. 
• A Positive Attitude: I have a plaque in my house that reads, “Happy is what we make it – always has been, always will be.” There is scientific research that supports the power of positive thinking. This doesn’t mean that you have to be positive all the time. No way, who in the hell can do that?!?! It means, to me to least, being able to find at least one positive in every situation; no matter how negative that situation might be. Or how small the positive is that you find in it. What could be positive about sitting in the ER that day? There was a pretty HUGE positive actually! It was the date – June 1st – the first day of my new health insurance with super awesome coverage! BEST DAY EVER!

After my four and half hour wait, a nurse finally called my name. As I packed up my ER survival kit and followed the nurse into an exam room she apologized to me for the long wait. The first time I was here, when the nurse said that to me I wanted to rip her face off and scream, “You’re sorry?!?! Really!?!? Like THAT does me any good! I just wasted six hours of my life sitting in that damn waiting room with those annoying sick people and all you can say is SORRY?!?!”

But not this time. This time I was prepared with my E.R. survival kit and I was taking control of my situation the best I could. Most importantly, I remained positive and it made all the difference.