Posted in Hemiplegic Migraine, Kelly Johnson, Miss Colorado 2015 Talent, Show me your Stethoscope, The View

“Show Me Your Stethoscope”

Nurses. Everyone depends on a nurse at some point in life for something. Wether it be when you’re a newborn getting cleaned, a kiddo with a broken leg, an elderly person very sick, we all turn to nurses for comfort at some time. As cliche as it may be, it truly takes a special person to be a good nurse. I’ve bragged on some of my nurses more than anything else. So, when The View gave their unedited thoughts about nursing, I read through some incredible nurses pushing the “Show Me Your Stethoscope” campaign. I’ve watched clips of the episode from The View, I watched the pageant live and cried as Miss. Colorado spoke with such sincerity about her friend, Joe, and I’ve found several mocking articles spread over Facebook. Although I think the original comments made were not tasteful, but not horrendous, the articles popping up everywhere forming from many opinions and few facts have made it the perfect platform for people to present their amazing nursing stories.

So here’s mine,

My nurses, the great ones leave an honest ever-lasting impression. It is my nurses that wake me up for vital checks in the early morning hours, the nurses that have to poke me an extra time to get blood. It is my nurses who force awful things down my throat, my nurses who have to deliver the bad news AND get the business on something they had no say in. But, it is my nurses who get to know Hadley, who have relationships with my family members. It is my nurses who make sure I am comfortable, who run to do whatever I ask them. It is my nurses who will hug me after a long day, who will let me sneak in an extra nap, let me complain about the hospital, even let me sneak outside for a minute of fresh air. My nurses are incredible.

The next time a nurse of mine sinks next to my bedside with the comment, “I cannot Hadley, for I am just your nurse”,  I will think of Kelly Johnson. I hope to have the thought that Joe had, and I hope I can leave a lasting mark on whichever nurse it may be, reminding them that “just a nurse” will never be a shameful title. Whitney may be just a nurse, but I hold her opinion and insight higher than most, I look forward to our days together, and I tear up when she won’t hug me good-bye until the last second because she too will miss me. Vicki may be just a nurse, but when she sat on my bed holding my hands telling me her most personal of stories, she was my friend. And when she was the person I called when in pain, when upset, when in need, she was “Aunt Vicki”.

Melissa, the nurse at the doctors office who hasn’t ever had to poke me or wake me in the middle of the night, but the nurse that has gone out of her way to actually know my case as more than just a case. Casey may just be my school nurse, but she has had more floor parties with me than anyone and held me when I cried…sometimes crying with me. They’re both just nurses. Nurses I wouldn’t have made it here without. 

My infusions nurses are just that, nurses. But Lewis, JP, Velvet, and all others, they are the people that make my parents trust their care for me, and they are the people I go to with my many questions. My infusion nurses are the ladies and Lewis that know exactly how I like my blankets, know the order of my medications by memory, remember that Benadryl makes me cough. They are the people who build relationships with my parents, my brothers, my grandma and my friends. JP is my nurse, but is the person who makes my scared little brother involved and comfortable during infusions. JP is the nurse that laughs when Parker wears a mask and is interested in all the gadgets of the room. Velvet is the nurse that chats with my grandma, and makes a bummer of a setting light hearted and relatable. Lewis, well he’s extra special. Lewis is the nurse that has a bromance with my dad. Lol But! He is still just a nurse.

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You see, all of my nurses are just that…nurses. It is their profession, it is who they are, and it is why the are the people that they are. They’re my friends, the people who comfort me, my voice, those who check in or grab a hug when I’m not doing well. They’re my nurses. And I cannot wait to be one with all of them.

And to Kelly Johnson, the beautiful beauty queen from Colorado, keep doing your thing! I admire her for going after her dreams of becoming Miss. America. But, I admire her even more for staying true to herself, and not trying to make herself any more than what she is. Nursing is a talent, and though maybe not one for the Miss America stage, her talent will go much farther than Miss. Florida’s graceful dancing or Miss. Georgia’s gorgeous voice. I cried like a baby listening to every word of her monologue, but even more noticing the true sincerity in her heartfelt speech. Miss. Colorado, please never forget Joe.

I cannot wait to be just a nurse.

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Posted in Hemiplegic Migraine

Mind Blown.

I’ve mentioned in past blogs the dramatic lock-jaw symptom I dealt with all summer. Typically, lock jaw means the sufferers’ jaw is locked closed and they cannot physically open it. I’m special and have what I think is the even worse side of that. When my mouth pulls to the right of my face it usually means my jaw is close to locking…open. That means I cannot eat, take oral medications, drink or sleep when the ordeal begins. My jaw quickly began to lock itself open more often than before, and the hardest part is that we have yet to be able to break the cycle on our own. This has earned me countless, almost weekly, ER trips. The last thing I want to do when I don’t feel good, or ever, is deal with the criticizing ER staff and loud, florescent lit department. However, lock-jaw is so painful I usually give in to ER rescues more quickly than normal. We’ve tried waiting hours and even days before hitting the hospital, hoping my home rescues could eventually calm my jaw. On the other hand, we’ve tried going straight to the emergency room because we know that route works and it means we don’t have to pump so many unsuccessful meds into me at home. Long story short, it is one of, if not the most painful symptoms I struggle with frequently.

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Tonight, I was scrolling through Facebook when a post from my Hemiplegic Migraine support group literally stopped me in my tracks. “Asking for some advice…I’ve been in a cycle for 6 days now…where hm comes and goes…but now my jaw with has completely locked up…anyone else have this??? And what have u done” WHAT. I’ve been trying to track these attacks for months, looking for any conclusion that would make this odd symptom make sense. Both of my neurologists have spent time witnessing an attack in person, watching videos or pictures of attacks, working on treatments and trying to come up with some type of explanation. Now, I’m reading yet another post leaving me mind blown of the to-the-T description given by multiple people all states or countries away from each other. How? Just, how?

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The very first response started with, “Mine locked with my mouth open…”. Yet again, that uncomfortable feeling in my gut urged me to read everyone else’s comments. 15 comments followed, each full of unfortunate thankfulness that someone else understood the excruciating pain that isn’t possible to describe. Person after person typing about their personal horror stories caused by reverse-like lock jaw. Seven people shared their need for emergency room trips each time, and the “cocktail” they required was nearly the exact that I require. I immediately had tears in my eyes. How? Just, how?

I’ve said it before, and I’ll say it again, the feeling of someone finally understanding exactly what you can’t put into words is odd, simply put. Over and over again these strangers through a computer get me. I relate to those people and all of a sudden i’m taking a deep breath, I’m reassured that I am not alone and WE will all continue to conquer. I hate that reading about other people struggling through days just as I am is the most comforting part of all this. I hate even more that we’re made to feel alone and crazy to the point that we even begin second guessing ourselves. That being said, I am thankful to have a doctor that does back me up. Though Dr. Diamond didn’t have a straight answer for me about my jaw, she held my hand, looked me into the eye and said, “Hadley, you are not crazy. This is real. We’ve witnessed it. I’m sorry I don’t have an answer for you, but you are anything but crazy.” Do you know how many years I have begged for a doctor to tell me that? Three solid years. Nothing about HM is fair to any of us, but I am SO thankful to have a community to back me up, even if they’re behind a computer screen.

So, again I ask, how? How in the world does a disease ending in “migraine” make me hurt, make me vomit, make me confused, make me blind, make me have seizures, make my body stroke out, make my jaw lock? How? We are begging for answers. We are doing more than our fair share of research. We need answers. Until then, thank goodness for support groups. Until then, we will stay thankful that we are not the only person in the world fighting through this.

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