#talkingback

A kids and teens perspective on chronic life


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A Not So Normal, Normal Week

By Karen Richards

Some things are just so ridiculous to imagine we cannot possibly comprehend them. My life is one of those things. I am fourteen. I would like to say I’m beautiful and smart, but that might be pushing it. People see me and they think that I am normal but that’s the thing… I am not normal at all. I have many chronic illnesses like EDS, POTs and Mito to name a few, and bad things seem to sometimes happen to me.

For example, last Friday when I got this migraine. My friend slept over and I guess I was dealing okay. The next day we went shopping and I burned a mix tape on my computer for a friend. Looking at a screen didn’t help my cause.  By 6 o’clock I was in bed with a pillow over my head curled up into a pathetic ball. Migraine!  My friend had gone home at three and we had done absolutely nothing. She decided to go to Launch (a trampoline park), and asked me if I wanted to come but I didn’t feel like jumping on trampolines with a raging headache. I had literally made myself incapacitated in pain by doing nothing.

I went to bed at six and didn’t get up until 3 the next day. My mom came to check on my and I started crying and told her that my head felt like it was going to explode. The first thing we both thought of was that I needed a shower because I stunk like a locker room. Then, the second thing we both thought of was that my head shunt must be malfunctioning.

She emailed my doctor in New York and made an appointment for Wednesday. On Monday, she made me stay home. I swear I have a real talent; I can make my body crash doing nothing. So, I stayed home Tuesday and then Wednesday morning we left for the appointment in New York. We do this drive all the time and it never gets any shorter. Finally "WE WERE THERE YET!".

When we saw the doctor he stuck a needle into my back and then in the shunt. I have just gotten so used to needles in my back I don’t really notice it anymore. Anyways my shunt was working fine so we have no idea why my headache is so bad. Then we went to a family friend’s house, which is basically our home in New York while we are seeing these doctors. God bless them, I don’t know how they put up with us.

My migraine from Friday (it was now Thursday) was still there and was at its worst. We had to see the doctor for one more appointment. While waiting for him, I tore up a paper cup and had the lights off. When he walked in, his first impression of me was a kid with torn up pieces of a paper cup on my lap insisting that he could not turn the lights on. Then as he talked, I couldn’t help but keep groaning "my head." I’m surprised he didn’t run away thinking I was possessed. He had a nurse come in to draw my blood and my first reaction was "Do you have to turn the lights on?" Obviously, the answer was yes. They turned the lights on and I started uncontrollably balling my eyes out. I didn’t even know I was crying I was just in so much pain the tears kinda just came.  After my blood draw, the doctor wanted to see me again but I told my Mom to run and get the car. Since she was slow getting up, I ran with her. In the elevator, my head just hurt so bad I randomly projectile vomited all over the elevator and then to top it off, I collapsed and started crying again. I’m pretty sure the other people in the elevator thought I had Ebloa. 

I slept the whole car ride back only to get to the house where my head felt awful again. Like I said, I’ve got a real talent: I do nothing but it feels like I've just jumped off a bridge.  Over the weekend, I had a lot of studying to do. It was so hard to concentrate with my head pounding, but I did it.  I don’t know why my body hates me so much and causes me all this pain. It’s really stupid like that.  On Monday, I went to school for my exams and called my mom a few hours later when I randomly started breaking out in hives. She picked me up and the office lady gave me the look from hell. “I WILL be seeing you tomorrow for your exams.” She thinks I’m making it all up (which I’m not ) so she’s always giving me a hard time. I just nodded and walked out.

On the ride home, my throat started to close and I couldn’t breathe and since my mom was in the other room I started banging things so she would come in.  She’s totally oblivious, she ignored me. So, like a puffy swollen oompa loompa I waddled into her room as quickly as I could. Then I said I could not breathe in the last breath I had left and she ran to get my epi pen. I had always given myself my epi pens before but I was so dizzy I told her to do it. It was only at this moment I realized she didn’t know how the hell to use an epi pen and was very inefficient at following the instructions on the side. So I had to stab myself. I could barely breathe and as soon as I could my mom took the opportunity to harass me about the one thing I didn’t want to hear ‘Do you want to go into the ER or have me call 911?’ I just shook my head and gave her the easy answer “I don’t have time I have to study for finals. Just do the Benadryl regimen and we will be fine.” So, that’s what we did.

Today, I went into school (thankfully without hives) and totally failed my finals. I should have actually done all that makeup work… Also, it doesn’t help that I was drugged up on Benadryl but hey - excuses, excuses. Now I am dreading the morning because I have Bio and History finals tomorrow. I wish I didn’t have to go but I do no matter how awful I feel.

I guess it’s been a pretty typical week for me. I would love to be the other kids but hey, they don’t get to throw up on strangers in an elevator and I do. My miserable life is hysterical. I guess I have to laugh at it because otherwise I would cry.