Posted in Chronic Migraine, Daily Migraine, Hemiplegic Migraine, Seizures

Hadley; noun

Sitting down to pump out a blog I will actually publish feels good after taking a three week break. I appreciate everybody asking if they’ve missed my latest one or wondering where I’ve been. It’s been a rough go lately and I decided to take a bit of a break from posting. Over the last three weeks I’ve written several pieces, but after reading over them they felt like negative whiny run-ons. I also just simply wasn’t motivated to share all of the bad stuff swirling around in Hadley world. Blogging is something I’ve come to love, but sometimes it’s still a bit hard to share such personal things. Sharing descriptions of such unattractive insecurities just wasn’t something I could bring myself to do while I was in a negative spot week. BUT! I’ve taken my time, and I’m glad to be back on the horse. Don’t worry, this doesn’t take away from the honest, raw feelings put out here. 

While putting everything out there is necessary if I want to blog about my health, it can also be tough to find the line of sharing what needs to be shared, what details I want to share, and what’s right to keep private. Putting descriptions about paralysis, lockjaw, seizures and hospitals is simply unattractive. I’m not saying I need everyone telling me I’m super hot or anything surface level, really. But to have such detailed depictions of incidents that intimidate and turn me off, means that many more of the details I share probably do that much more to many more people. I’m not sure when infusion appointments became what I looked forward to, or when I started celebrating the taste of saline. At some point I became an expert in medical phrases and able to rattle off lists and purposes of medications. I’m 19 years old, but the shots I celebrate consist of needles and Benadryl. Those just aren’t things that my peers can relate to. It’s been tough for me lately, to worry that everyone I talk to will only be able to see me as HM Hadley.

I’m not sure why it’s been such a recent insecurity for me, or if it’s just one that I’m finally mentally ready to tackle. I make the effort to get up, actually blow dry my hair, do my hair, and get dressed every day that I can leaving the house or not, something I never felt the need to do before. I’ve taken the time to actually put makeup on to go into town if I’m not feeling badly, or to keep my nails painted. Honestly, I’m not sure if these are positives, because a few years ago I always accomplished all of these things, or if it’s the insecurities taking over. Feeling such a prominent insecurity is kind of uncharted waters for me. Don’t get me wrong, of course I have had all the same lows teenage girls go through, but overall I’ve always been pretty confident in myself.

I think I worry fewer and fewer people will get to know, or want to get to know, the real Hadley. To be perfectly honest, it’s something that I’m getting to know all over again. But I am SO excited about that and I want others to be also, I guess. See, the newfound insecurity is even coming through in this post, at least I caught it, because I’ve added “I think” to so many sentences like I need to justify my thoughts. I suppose the moral of my rambles here is this; I lost myself for a long time. And in getting back to myself, I’ve gotten so far that I’m able to face lows and insecurities that have probably been here the whole time. As much as that scares me to death, that also makes me want to pat myself on the back. I love this blog, I love the support this blog has brought me personally, and even more-so the support to others I will never meet, but I don’t want anyone else to lose Hadley.

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😉

I hope this reached some level of making sense.

Posted in Beating Hemiplegic Migraine, Hemiplegic Migraine

Anniversary or Un-iversary?

Three years. 36 months. One thousand, ninety five days. Three grades. The cliche “time feels like it has flown by and not moved at at once” has never rung so true. October 26, 2012 I had my first seizure and never looked back. Since that first day in Spanish class, I can count on my fingers the number of seizure or attack free days that I have had. In so many ways I can’t convince myself it’s possible that this all started three short years ago, on the other hand I cannot believe I just used the term, “three short years ago”. It’s really odd to think back on that day, no memory of mine is so pristine. Waking up that Friday morning I felt awful but attributed that to having cheered in the rainy district game the night before, eating/sleeping poorly, and a fall allergy asthma attack. When Sean greeted me that morning, he said “Whoa, not feeling too hot?” Third hour I let him know I had passed out, he texted back “Atta girl!” These are perfect examples as to life before seizures. Before seizures became the norm, telling someone I passed out carried the assumption I just fell asleep at a bad time, commenting on the unexpected meant me looking like I got it by a truck, now the unexpected is me not looking like a character from The Walking Dead. My first trip into the ER, ever, came that Sunday after a second episode. The ER doctor didn’t run a single blood test or scan, instead he came in and racked it up to constipation. The guy literally squeezed as if he were extremely constipated and my dad literally laughed like this guy was an actual doctor. Funny enough he is now an ER doctor that I would prefer over some.

That whole first week I was so sick my everything was exhausted and I had pain deep in my bones. Many people suggested I get tested for mono, that never happened but I now wish we would’ve pushed harder for that. There are some recent understandings that a mutated strand of Mono can cause Sporadic Hemiplegic Migraine. That being said, when we consider the week before, at my aunt’s wedding, everyone asked if I was sick, at the time I didn’t think I was but six days later…    just something more to ponder😉

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A lot has changed in the last year, I would say more than before but I’m pretty sure I said that last year. lol. We’ve learned just how hard it is to live with a progressive disease. A significant dip in my cognitive function has been clear the past few months, at least in the memory department. I used to be able to recall the tiniest details for years, now I ask the same question over and over without noticing I’ve already gotten the answer. It’s so uncomfortable when I’m mid conversation with someone, like a nurse, and out of the blue I truly cannot recall a signal detail of the conversation, what I was going to say or what had just come out of my mouth. Days that happens I typically end up remembering zero of. But positively, I think I’ve grown most in my attitude. My understanding, learning, and mood have all changed significantly this year and I’m glad to say I’m confident that I have grown in that department.

Needless to say, when this all started we had no idea that we’d be wishing for 30 second pass-outs in the future. Three years ago, doctors told me I was dehydrated and stressed. Three years ago, my psych consult listened to all of my baggage and ultimately encouraged me to go back to the medical side of things. Two years ago, doctors labeled me just another teen girl with a conversion disorder and swore in 6-12months, psych would have me healed. Two years ago, well that psych consult was bad on my end. 😯But, she saw through my frustration and still told us to go back to the medical side. One year ago, doctors comforted me and promised to know “Hadley”, not just be another doctor unable to pick me out of a line up. One year ago, the psych PA ditched the consult out of shock that doctors had played hot potato with me like that, while the Dr applauded my ability to self advocate and be so knowledgable. I now wish my previous physicians would’ve bet their medical licenses on me being magically healed way back when.

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This is another video contest prompt; “Show us your fight with HM this year” I think it was the perfect thing to get together, a video is the only way to truly show my special support over the year. Going through the pictures and videos made me a tad emotional, of course. I often am disappointed in myself for not being able to solve my own problems. Then again, I’m impressed that I get up and do life on some of the days I do. I never knew a blog would require me to take so many more selfies😂 That being said, the selfies themselves were a reminder that I’m not fighting for my life and to be thankful I’m able to get available treatments. There’s always someone out there who has it worse than you. 👇🏼

https://www.youtube.com/watch?v=Oj8d1FPT7kw

My editing skills are still in the learning process. Winners of this contest get rewarded medical bill scholarships.

So thank YOU, for reading this blog, for taking the time to send an encouraging comment, for going out of your way to come chat with me, for checking on my parents and brother because they’re living this too. And thanks for those of you who have taken it upon yourself to follow IHMF updates and want to learn. I can’t wait to read this post next year and laugh at what I’m good at then, and see what I need to get back to. Always learning!!!


What I’ve gotten myself into this year:

  • 5 Chicago Trips
  • 50 days inpatient in Chicago
  • PICC line placement
  • Port-a-cath surgery
  • At least 20 IVs…probably way more
  • ER trips…uhh I can’t count that high.
  • 31 Infusion treatments
  • 5 ultrasounds
  • 2 MRIs
  • 4 CT scans
  • 2 MRA scans
  • 6 EKGs
  • Endoscopy
  • Botox
  • Diamond Headache Clinic
  • Mayo Clini- Rochester

download

On one last note, if you are interested in purchasing a shirt, all funds raised from this shirt will go directly to Hemiplegic Migraine research and trials to be done in the United States.

Includes 3 styles with a black, grey, or white option for each.
Includes 3 styles with a black, grey, or white option for each.

Order Here!👇🏼

https://www.customink.com/g/hrr0-00aa-k9cq

Posted in Beating Hemiplegic Migraine, Hemiplegic Migraine, Just Keep Keepin On

Just Keep Keepin On

I find myself stuck wide awake at 2am, again. I’ve gone through all the tricks you’re “supposed to do” to cure insomnia. I go down the list most nights, guess what? None of them really work. Hopefully my mom and Paula got more out of our two hour sleep class at Mayo than I did.

I sleep best with a TV on, even though that’s a big NO. I need the sound and general distraction to keep my mind from wondering a thousand miles a minute. If I make it through the nightly Friend’s marathon on Nick at Night I usually turn the TV off and try just music. Rarely does that work. Then starts the list of ridiculous things you can find me doing in the early AM hours; yoga, breathing exercises, stretching, mindfulness, oxygen treatments, ice, moving to the couch, moving downstairs, peppermint headbands. All of this on top of sheets freshly washed in Lavender and a handful of night time medications that would knock out a giant. Yet, here I am. Wide awake. Luckily, my favorite time to write is after midnight! Lol.

Tonight, however, is an extra rough night. The HM monster is in full swing. After a painful seizure this evening and shocks sending a jolt from the base of my neck through my fingers and toes, my right arm and leg are completely numb and paralyzed. All the while I swear I have ice picks sticking out of my face and in my eye. Having to skip my Tuesday infusion is going to be extra rough this week.

This is a completely accurate depiction of how the inside of my head feels. Thanks Snapchat. Might be a tad too graphic for this. Oh Well.

I wish I could explain just how odd it is to have zero sensation on half of your body. I tried running my hand under hot water tonight, just to see if I could bring some feeling back to it. Nada. If I wouldn’t have been watching my hand under the running water, I wouldn’t have been able to tell you that was happening. Being numb is such an uncomfortable feeling that is impossible to get used to. And then you think, “how is it uncomfortable if you can’t feel?” I guess it’s more mentally uncomfortable. It’s been quite a long time since my arm and leg have been paralyzed. I went several months where they would just get extra tingly, my leg would drag occasionally, but even that wasn’t a constant when my attacks were hitting.

Unfortunately, in the last few weeks the numbness, weakness and paralysis that screams stroke to so many, have been frequent and worrisome. Usually starting in my finger tips, the pins and needles feeling all HMers know too well has started to quickly spread all the way past my shoulder. Last week, we began noticing that as that feeling was becoming more frequent, soon after my right arm starting spasming and jerking out of my control. I tried my muscle relaxants, those had no effect. Eventually, the spams chilled out by themselves, which we noted as a good sign. That was, until my arm ended up paralyzed for the rest of the night. Luckily, when I woke up the next morning it was back to full mobility and almost complete feeling had returned! That didn’t last long. Boo.

Then, we have my leg. My leg has always shown more signs of HM than my arm. Last year it was fully numb and paralyzed for three months. Yep, awful. During bad attacks it was still dragging, and that was one sign that the Hemiplegic days to follow would be in full force. But in the last week or two, we’ve seen more signs of weakness. Several times, out of nowhere, my leg has completely given out and caused me some ugly falls. Not that I need extra of those. Two nights ago, I was walking through the kitchen when it totally randomly landed me in a heap on the floor. From the tips of my toes to my hip I had no feeling, but I was still able to move it normally, so I just ignored it best I could. Again, the next morning it was back to normal.

I hope I’m proved wrong, but sadly I’d be willing to bet I don’t wake up good as new tomorrow. Seizures have been rough all night and I’m still dragging my leg when I try to walk a little bit, or having to use my left hand to pull my right arm into a comfortable position. Trying to type this one-handed is actually slightly comical. Well, and slightly frustrating. I keep telling my right hand to reach for the letters and nothing happens. Ugh. It’s actually extra weird to have my leg numb because I damaged a nerve in my left leg with a shot a few months ago and have lost complete feeling in half of my left thigh.

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So, this is actually the part of my left leg that is constantly numb. Weird how you can see the parts that get goosebumps and the parts that don’t, huh?

I’m a mess. A painful, numb, exhausted, stuck, mess. And for tonight, complaining about all of that is okay. But not tomorrow! Tomorrow I have to get up, know it is a new day, and try all the secret tricks of making it through another attack.

keepon

Posted in Beating Hemiplegic Migraine, Hemiplegic Migraine, Today I Win, Uncategorized

October 9th. One Year.

One year ago today, October 9th I was diagnosed with Sporadic Hemiplegic Migraine(SHM). SHM is one of two types of a rare neurological disease, caused by a gene mutation. Familial Hemiplegic Migraine(FHM) and Sporadic Hemiplegic Migraine affect only 3% of our population, world-wide. Sufferers of both SHM and FHM present with stroke-like symptoms, visual disturbances, memory loss and more. Severe attacks may leave people with prolonged hemiplegia and seizures, these are the attacks I suffer from most. 

Want to learn more? Check these out!👇🏼
https://rarediseases.info.nih.gov/gard/10768/hemiplegic-migraine/resources/1
http://ghr.nlm.nih.gov/condition/sporadic-hemiplegic-migraine

In the last year I have found peace with having fought two years for a diagnosis. I’ve been grateful to have found the HM community to lean on and learn from. We’ve found comfort in Hemiplegic Migraines, in the most odd and unfortunate way. We sure have learned a lot this year! 

This is a post I shared on my original blog, the one I kept a secret😉, the day I got to go home after those initial 15 days in the hospital.

After being poked and prodded, scanned, tested and asked uncomfortable questions, 8 rounds of blood tests, two IV, one IV infection, one IV knocked into a nerve, 11 shots in my butt and one everyday in my stomach, my first “surgical procedure” getting my PICC line, my second procedure getting my endoscopy, 3 ultrasounds, a couple of hours worth of scans, getting woken up 5 times a night orrrr not sleeping at all, getting infusions around the clock, having good days and bad, and staying in the hospital 14 nights…….I’m happy to say how worth it all of that was. As my “anniversary” rolls around again, soon, it’s nice to at least feel knowledgeable and not so shocked or in denial. It’s chronic, so it’s something I’m stuck with. In typical Hadley fashion, it’s amongst the most rare so it doesn’t come with a treatment locked and loaded. We’re happy to be doing what we can and letting my body breathe a little after so many heavy drugs is best for now.”

 
I’d say some things have changed in the last 365 days.
  1. Two IV’s is for wimps💁🏼
  2. Talking about getting shots in your butt doesn’t ever stop getting awkward. No matter how you put it. No matter how many times.                                                                                                                                                                                         🙋🏼My dad gives me shots in my butt.                                                                                                                                             🙈See. Still awkward.

3) PICC lines and edocscopys are hardly surgical procedures. 

4) I hope my writings I share aren’t so whiny!!

5)….I was serious about heavy drugs. I don’t remember writing this and couldn’t tell you these details otherwise. Seriously.😂

Willis Tower in Chicago!

 

Visiting “the bean”…what I wanted to see most but have no memory of. Lol

    

 Fun night in the city with my momma the night before 🙂

Hard Rock Cafe!!

  

 

On one last note, if you are interested in purchasing a shirt, all funds raised from this shirt will go directly to Hemiplegic Migraine research and trials to be done in the United States.

Includes 3 styles with a black, grey, or white option for each.
Includes 3 styles with a black, grey, or white option for each.

Order Here!

https://www.customink.com/g/hrr0-00aa-k9cq

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?

jaw drop1

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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Posted in Uncategorized

Infusion Treatments😷💉💊💪🏼

According to aafp.org, of the 51% of chronic migraine sufferers that report serious disturbance in quality of life, 83% percent of those people are found to be treated best with intravenous medications. These numbers are backed up by the 62% of chronic migrainers who find substantial relief in long term infusion therapy.

My body has proven these numbers to be very true as I have always responded to IV medications, still having to be in high doses, whereas I have no reaction to oral medications. So, although the ER is full of triggers and is a temporary fix, we have found it to be the necessary step for my body. My parents and I spend our bonding time in the hospital more than anyone knows. During my Diamond hospital stays, never less than a week, I am on continuous IV therapy that my body depends on.

   Emergency Room visits and Chicago trips just aren’t a practical way to mange life. I already have to go to Chicago every 90 days. Between attacks, I’m typically extremely hypotensive but during an attack I shoot up into the hypertensive range. I am unable to maintain my own hydration, at all. Although I take the maximum dose of Magnesium daily, my levels have just continued to drop. So, in March, Dr. Diamond decided to start me on weekly infusion treatments as a preventive, meaning I would go each week even if I wasn’t feeling bad. I would be getting fluids for hydration and blood pressure maintenance, magnesium to supplement my levels, Phenergan to help my crazy nausea, a medication for my seizures, a med for pain(but no opioids for me!), and my lucky drug, Benadryl, in high doses for my migraine.

 My mom, Graham and I found ourselves in the infusion center, surrounded by sick, elderly people, ready for my first infusion treatment. I was given the choice between a recliner or bed room. I chose a bed room so I could nap. I had a quiet, private room, able to turn the lights down and shut the door. The two chairs in the room for my visitors were even kinda comfy! I started to relax as I jumped right into making myself at home, moving everything to how I like my hospital rooms. Graham is uncomfortable with how comfortable I am in the hospital setting. Poor guy.

 Lewis was my nurse that first day and he immediately made me feel better. He took the time to listen and really answer each question I had. But of course, he struggled with my crappy grandma veins. Lewis got me through my treatment keeping me as comfortable as possible, he must’ve done something right because I slept for four of the six hours! He still comes and checks on me when he sees that I’m in. Kelsey approves of him because he snuck both of us some chocolate ice cream last week, annnd tied Kelsey’s glove balloon😉

 (gotta keep her entertained somehow😉)

Although weekly hospital trips aren’t ideal or exciting, I’m thankful for the easy, smooth, helpful flow of the infusion center. But each week it was getting harder and harder to place a good IV. Multiple nurses would try, several veins were blown out, and NICU lines were making for a long(6 hour+) painful trip each week. When my veins weren’t healthy enough for a mid-line I finally went under the knife and got my portacath placed under my collar bone. This improvement cut my infusion times in half, made the reception of the drugs safest and made it basically pain free each treatment. Hallelujah!🙏🏼🙌🏼

    (NO more IVs!!!)

  (Being bionic woman is extra cool)

All the people willing to support me and go with me to keep me company during an infusion just makes me so so happy. At least it gives my parents some downtime? Ehh. Graham loves to come sit with me but is sure to watch the nurse like a hawk. He knows exactly how it should go, step by step, and is not afraid to speak up when something is skipped. That’s a lot of responsibility for a nine year old. Parker plays with every gadget in the room….twice. Including the nurses😉 My grandmas and aunts have taken their turn without complaints, too. Love them!

  (We didn’t leave until 5:30am 😳)         

Even more special, either Ashley or Kelsey is there almost every week. Ash loves to badger the nurses with questions, yet is still always mind blown by something new every time she comes. Kels and I take advantage of the perfect time for lunch dates and Pinterest pinning. Wellll, she actually just takes advantage of out of it Hadley.😂 Zach and I got stuck with a two hour extended infusion and cranky nurse. The treatment center closes at 5, I think we walked out at 7:30. Oopps. Zach may never volunteer again, I was just thankful for the good company and Mugs Up date!

        (Skype dates: the obvious Hospital must-have)

So, each week, for the last three months, I intial and sign the consent forms before the receptionist has time to explain it to me, then check in with Nurse Kayla for my room assignment. She always smiles and sends me to my “regular”, room 5, that is oddly comforting to me every time. Maybe next time I’ll share my Captain Crunch. Ha! Passing around “good mornings” with my nurses and joking about who called dibs on me this week, happily makes me feel like more than just the next patient. I think all of the infusion staff has stopped by for a high five or hug for winning the port battle😊 I’ve really gotten quite comfortable and have appreciated the honest communication and backing up the patient.

So, each week, indefinitely I will have my port sterilely accessed and get: my pushed medications quickly, my infused meds safely, and my fluids dripped over two hours. I’ll keep making the best of the trips by taking naps and enjoying the company I have for the week. The treatments are completely worth it, so I unplug(mostly) for the day and usually settle in with a good movie to watch, or I’m in a med coma state. I’ll keep walking out of the hospital feeling like a totally different person from when I walked in, and that’s the best feeling.

 (She’s actually de-porting me for the week)         

Unfortunately my Hemiplegic Migraine attacks have begun to land me in the ER more and more frequently. In fact we got home from the emergency department at 5:30 the other morning and had to be back in the hospital for my infusion at 10 AM. Don’t worry, I’m easily Boone Hospital’s # 1 patient. So, I’m very thankful that these weekly infusion treatments have made a distinct change in my chronic migraine, canceling out the ER trips for those as well. I have been pleasantly surprised with the mostly, smooth communication between my Chicago doctor and Columbia doctor. That’s way too rare. I could write a never ending book about the frustrations us frequent flyers run into within the hospital system, or I could just become president and change the medical world, right?! Yeah, noo thank you. At the end of the week, these inconvenient infusions are 100% worth it to help keep my body rollin. In fact, on an average week, a day or two before my treatment I begin to drag. Basically, I just need a swift kick in the rear once a week💁🏼 I also couldn’t be happier with my port, best decision I have pushed for. Although drugs may be hard on your body, they are sometimes necessary. If you think IV therapy could be a game changer for you too, look into it! Work with your doctor to come up with the best cocktail for your health, it’s all about trial and error. Listen to your bodies!!!

   (Standing port proud)

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Broken Crayons Still Color 

My first trip to my Chicago hospital in October was a rough transition for me at first. They promised they didn’t cheap out on the detergent, but I told them they made up for that in the toilet paper department! Lol. Luckily, one of the most special parts about my Diamond family is just that, they make you feel like a family you fit into perfectly. 

I started attending all the classes I could make it to when I wasn’t in a med coma. My blood pressure dropped too low in Chair Yoga class and I passed out…didn’t go back to that one. I had a seizure in BioFeedback which resulted in the rapid response team wanting to shock me with the paddles… I avoid that now. I went to “Anger with Migraines” class. As everyone went around the circle introducing their struggles, I realized I was in a class for bipolar/depression/anger management patients. Oops. What was I supposed to say at my turn? Hey, I’m Hadley and I’m actually not angry? *foot in mouth* 🙆🏼

  
Kate, the occupational therapist, leads all of the other activities that keep us busy in The Point Room. She plans movie night, lunch dates, some of us even get to walk down the block to Platos Closet with her for “retail therapy”. Too bad my neon yellow wristband that says FALL RISK keeps me from shopping. I know some patients love being able to get out and do something normal. But my favorite groups that Kate leads are the Art Therapy sessions! 

Art hasn’t ever been something that interests me. I feel like creativity and patience are two things I lack and OCD is something I have…making a bad concoction for being good at art. Kate started bugging me about getting into it as she would drop markers and coloring pages off in my room. I enjoyed using all of my free time to color. 

   
 I decided to start going to the Art Therapy classes and I loved it. I’ve painted bird houses, drawn, done holiday crafts, made jewelry…Kate always has something new for us to try! When I was there in June, Nurse Vicki and I spent forever beading bracelets and ear rings for the other nurses or peds patients. It was so fun! (Even in the hospital)

  
The last session I was at a fellow patient said “broken crayons still color”, then described how we could all relate to that quote. All of us in the group were “broken”, yet we were all finding a way to keep going. I loved that. I’ve kept up with my art therapy at home and I am absolutely LOVING it. My grandma and I have kind of taken it on as “our thing”. It’s been fun to pick different styles and materials to try out together. I’ve decided I like painting canvases the most, so I’ve started doing that even on my own. I’ve gotten pretty comfortable using oil and acrylic paints. Something about getting into a new painting is just really calming for me. When my vision is bad or my eyes hurt painting is something that I can actually focus on that also distracts me. 
  
I’m not claiming to be the most talented at all…I mess up all the time! But that’s the beauty of it for me, I can just change the story of the painting. Everyone has their own natural, therapeutic therapies that work for them and I’m excited that painting has been able to be such a positive, enjoyable hobby for me! “Art washes away from the soul the dust of everyday life.” ~ Pablo Picasso

   
 

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Not the Silver Linings 

This is a post that I’ve gone back and forth deciding whether I should share it, and a post that I’ve written and rewritten a million times because I feel like it has to come out just right to not sound like whining. 

Tonight, I had a long conversation with someone else newly diagnosed with Hemiplegic Migraine. We touched on a side of a subject I usually avoid, instead responding with silly positive clichés. And that is; what I have and will miss out on. I usually blab about the silver linings, which is typically how I choose to look at it. But I often think about the raw truth.

  
I got my license the day after my 16th birthday, in August. After October 26th that year, I was done driving until I could go 6 months seizure free. At first, that didn’t bother me because driving actually stressed me out. Once all my friends started to get their licenses and cars and drive themselves around I began to wish I could drive. I would just say I was glad I didn’t have to pay for gas! But it wasn’t until recently that I’ve hated to always use someone for a ride. Three years later, and I still haven’t made it that 6 months free. I know it bothers me because I see my little brother driving and my little brother having to be my ride. I’m not sure if I’m jealous of Parker’s ability or experience. I’ve been just shopping around for cars I wish so badly I was scraping together money for. I’ve been craving the Independence a license gives you. 

  
I’m so so genuinely stoked for all of my friends and each of their different college plans. UCM, Mizzou, S&T, Columbia College, SLU; they all scored some serious talent and dedication. I can’t wait to hear about Hailey’s softball and I know Kelsey will have a million clubs to keep up with. But I am a little bummed to be missing that side of the college experience. I’ve planned to live on campus and rush for years. I guess plans change, because I’m not perfectly coordinating my dorm and going on coffee dates with my new roomie. I’ve desired sorority life probably forever, but I can always do it next year. I’m most sad that Kelsey will be two hours away while I’m stuck at home.

  
I always joke that I stay locked away in my house, which has changed recently but was true for quite some time. It was hard for me to realize how uncomfortable I made people, when I felt like I was the only person who should get to feel uncomfortable. Something being wrong with someone you care about is hard to adjust to, and though I couldn’t see it at the time, I now see in how many ways that can affect a loved one. I’ve never been one to be uncomfortable in my own skin until I had to worry about who I would seize in front of or not be able to function around. But I’ve never been so embarrassed as I was when, while I was cheering, someone yelled over the crowd that I was a fainting goat and asked if I would fall when they snapped at me. That still makes me sick to my stomach. During this process relationships have been the hardest “normal” to maintain.

But the thing I still struggle with most of all are the countless lost high school memories and most of all cheer. My parents always teach us a lesson using a time from their rebel days, and share their best memories from their glory days. I worry what stories I’ll have to tell my kids someday, or lack thereof. But to top the list I had the hardest time having to walk away from cheer. I was a good cheerleader. And no matter if it’s a sport or frilly and girly, stunting is hard work. All I ever looked forward to was stunting with Kayley and Libby. When I could no longer practice I felt like an awkward bystander just off to the side, I fell out of the always hilarious inside jokes, and felt too easily replaced in the stunt group I loved so much. If I had known October 25th, the last football game of the year, was going to be my last full game ever, I would’ve been a little sharper, thrown another basket, killed the fight song dance, and stunted with Kayley til our arms fell off. I would’ve cheered a little louder. I miss nights in Maddie’s hot tub and giving fart noise makers as birthday presents. At the end of the day I still scored best friends, basically a twin, and better Tan-Tar-A memories than anyone else. Always wear swim suits when body painting😉

   
   ps- DR on a road sign means drive not doctor…that confuses the pizza guy.