Posted in #teamhadley, 2017, 2018, Beating Hemiplegic Migraine, best friends, Botox, celebrate, Celebrate gif, Chevrolet Trax, Chevy Trax, Chronic Migraine, Daily Migraine, Dr. Cheesy, Dr. Lucchese, Dystonia, family, Friends gif, Health Blog, Hemiplegic Migraine, Hemiplegic Migraine Research Study, HM, invisibile illness teacher, Invisible Illness, Just Keep Keepin On, MU Health Care, port, portacath, preschool teacher, Rare Disease, Rare Disease Awareness, Rare Disease Awareness Day, Rare Disease Awareness Day 2017, Rare Disease Awareness Day 2018, Seizures, SHM, Sporadic Hemiplegic Migraine, support, thankful, Today I Win, Uncategorized, University ER, University of Missouri Health Care, Winning 365 Days, writer's block

Winning 365 Days

Hi, friends! I can’t believe it’s been close to a year since I’ve published a blog. I’ve worked on many but never got the right words across. I think I needed a break from talking about my sick life so much. I’m grateful I still have people reach out to me and that I continue to virtually meet and connect with more fighters. I hope this post still reaches people. I also hope it gives some others with invisible illnesses some hope. 🙂

February 2018 is over now. Who can believe that we’re already moving onto March? I’m glad for this month to be behind us, and have been ready for it be to for awhile. And not because mushy gushy Valentines day annoys me. 😉 February 28th, 2018 marks one year since I have been in the emergency room. Did you hear that people? ONE YEAR. For the last five years I never believed that would happen. Now, everybody pray I didn’t just jinx myself. I won’t be able to fully put into words the amount of thanks and weight off of my shoulders this brings, but I’m going to try to get as close as I can.

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Since 2012 I’ve been fighting a battle bigger than I ever could’ve imagined I would be up against. Hemiplegic Migraines and Chronic Daily Migraines stole five years of my life, nearly completely. I’m in the 0.02% of the population struggling with the ridiculous number of symptoms that come with this disease. It’s like a pinball machine of symptoms; each one triggering another up and down my right side. And even though it’s been five years, I still don’t like saying “I have a disease” in a sentence.

For those of you that don’t know, October 26, 2012 I was sitting in my sophomore Spanish class when I fell and had a seizure for the first time. Starting when I was 16 it looked like I was having a stroke more often then I looked like a “normal” teenager. Two years and 11 doctors later I was diagnosed with Sporadic Hemiplegic Migraines(SHM). I still wish the name didn’t end in migraine and maybe it would be taken a tad more seriously from those that don’t know anything about it. If you’re interested in some facts check out this link. (Diamond is where I was diagnosed) —> https://www.diamondheadache.com/patient-resources/types-and-symptoms/hemiplegic-migraine/

Here’s the best part, this year I’ve actually been “doing life” more than ever! Who gets so excited about adulting? Instead of weekly emergency room trips (seriously weekly), I’m working, driving, living. I work at a preschool which is something I have wanted to do, until starting my career, since I was in elementary school. Last week one of my sweet preschoolers asked what job I wanted to have when I get big. I hope, and plan, to become a nurse instead of a broadcast journalist like I planned for seven years. I would love to work in an infusion center, or specialized migraine clinic someday. She then told me when she gets big, she wants to be Ms. Hadley. ❤  That sure pulls on my heart strings. I love those kiddos.

I bought my own car and I’ve never been so happy to spend all my money. Hello more freedom as a 21 year old!! I’ve socialized more in the last six months than I have in the previous five years (I’m still pretty lame). My next step, aside from some time graduating from college, is to move out of my parents house before I’m a loser. Even though for now, that’s still the best choice for me.


​All of this being said, life still isn’t the easiest. While I don’t visit the emergency room weekly, I still go to the hospital every week. IV meds have always proven to help me the most so instead of getting them as a rescue in the ER, I get them as a preventative. Every Monday I go to the Ellis Fischel Cancer Center Ambulatory Infusion Unit for a six hour infusion, followed by an appointment to my neurologist, chiropractor and pharmacy. That probably sounds dramatic to most people, but I couldn’t be more appreciative of it because the routine has truly saved my life. I hated having to be a frequent flyer in the emergency room, being the main source of treatment obviously isn’t what that’s intended for. But it was what I was forced to do while I was doctor-less (or under the care of a useless neuro) for too long. Just because I haven’t been in the ER for a year doesn’t mean I haven’t been hospitalized this year. My attacks and damn jaw still occasionally decide to go hay wire, getting me admitted to the hospital. That’s just a detail I’ll have to accept likely for the rest of my life. I won’t even put out there the amount of medication it takes to keep me going since medication use can sometimes be so controversial these days. But I will say, while I don’t love having to use so many, after you lose so much of your life, you’re incredibly thankful for modern day medicine. I also use migraine and dystonia botox, weekly chiropractor visits and semi-frequent massages to get relief. Even with all of these drastic measures I’m still in daily pain more than you would ever know. That’s both the pro and con of an invisible disease. But how many times have I reiterated that I’m grateful for the progress that I’ve made?

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Infusion Day!

Lastly, and probably most importantly, the power of prayer and God is so incredible. While I always had faith, I often found myself questioning God’s reasoning for me having this wreck my life. I still don’t, and probably never will, understand that reasoning, but I trust in it now. For, when life gets too hard to stand, kneel. I’m confident that every prayer my way, which I know is an unbelievable number, made a difference. I truly believe my greatest blessings in life are my family, support systems, and Dr. Cheesy. Dr. Cheesy saved my life. That man has believed in me, fought for me and dedicated so much time to me since my first appointment with him. He kept his promise he made me on that April Fools day initial appointment. Any other time I would’ve thought it was an April Fools prank, but with him I knew in my soul it was not. Dr. Cheesy has seen me every Monday for the last (almost) two years. He has studied me. He continues to test me, always looking for more answers, more ways to help. He’s texted me back past midnight with attack plans when a bad HM attack hits, and fought back with the hospital when they’ve tried to push against him. That man has gone to multiple conferences in many states specifically for my  case, had special meetings for help with me, and presented my case in seminars to reach more doctors. Doctors like him are one in a million. Dr. Cheesy promised to give me my quality of life back if I gave him some time. That’s exactly what he has done.

The last 365 days have been some of the best of my life. I have never won so much. Support and family are priceless. Dr. Cheesy is an answered prayer. God is so so good. 2017, I love you. Today, I win.

 

 

 

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Posted in #teamhadley, Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Dystonia, Health Blog, Hemiplegic Migraine, Hemiplegic Migraine Research Study, HM, Just Keep Keepin On, MU Health Care, port, Seizures, SHM, Sporadic Hemiplegic Migraine, Today I Win, Uncategorized, University of Missouri Health Care, writer's block

nine.twenty-eight. twenty-sixteen.

Friends! I’ve missed you all! I’ve been absent for three months and some change, at this point. That’s practically years in blogging time. I feel terribly about it. Now, that doesn’t mean it has been months, or even weeks, since I last worked on a post. For me, and others passionate about writing, I cannot publicly publish a piece that I’m not happy with. It’s the very same as an artist being unwilling to turn in an incomplete piece of work. When writing there isn’t some formula you can follow that creates a “correct” post in the end, no one else can help make the words flow just right. Writing is a creative process and again, like artists, sometimes a wall gets built up that keeps your creativity from flowing. Writing is also an emotional process. No matter if you’re writing something fictional and having to give a person built only with words an entire personality, or if you’re writing something very real that is putting raw depictions out for all to read. Behind each piece, within each piece, lies so much emotion.

So, this is where I stand; I sit down at my computer at least once a week adding to, or creating a completely new piece, I don’t like how it comes together or feel as if anyone reading it could feel that my heart isn’t in it, I collect ideas that others give me and try so hard to write something within the realm of their brainstorm, I send pieces to my closest friends or other bloggers asking their opinions, I set a deadline for myself, I get frustrated, slam my computer shut, miss the deadline, and feel even more frustrated. I’ve come to realize the amount of pressure I feel to get a post out every so often. But why? No one has ever pressured me to write these blogs, no one has given me negative input. I’ve never felt this pressure before, because the source of this tension is me.

At first I was okay with taking a mini break, I knew my mind needed it. It can be so hard to talk about the bad days and the ugly details. When I share those with you guys it means I have to, kind of, go through them again. Though I may not be physically going through each attack or situation again, emotionally I have to in order to share the truth. That in turn means I feel the mental exhaustion all over again, on top of the current, steady, mental and physical exhaustion I always carry. Again, no one asked me to do this to myself. No one asked me to continuously share my life so vividly through this outlet. I do it, and will continue to do so, because I love the support, interest, knowledge and relationships that have sparked from this platform I have created. The time put into this site wouldn’t be worth much if I didn’t keep it real, raw, and unedited.

My mini break has somehow turned into a very extended break. But to be honest, I feel refreshed. Forcing myself to write because I need to, not because I want to isn’t real, raw or honest. Through all of this time I have continued to have conversation with those who reach out and even speak with/participate in a research study being done for Hemiplegic Migraines!! This is a huge step. In the three months off I’ve made good friends with a fellow spoonie. Though she lives countries away from me, we chat almost daily. This is why I blog.

While all above is true, I’m also very excited to share many of my good days and positive changes that I’ve made strides towards recently! Thank you for being understanding and supportive. This officially means I AM BACK! Now you guys can hold me to it 😉

I’ve missed you all!

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Posted in Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Just Keep Keepin On, Seizures, Today I Win, Uncategorized, Vlog

Rare Disease Awareness Day 2016🤒🤕😷

Each year, the last day of February represents the only day of the year rare diseases are recognized.  With nearly 20 million Americans living with a rare disease, you probably know someone fighting one of these battles, yet their day won’t get half the recognition that national Margarita Day or Pet Day gets. Each of us unfortunate enough to know the importance of this day would much rather celebrate Kiss and Make-Up Day, August 25th, or National Chocolate Covered Anything Day, December 16th. It’s still awkward for me to claim importance to a title with the words “Rare” and “Disease”, but it’s important so I’m going for it.

That being said, of the close to 7,000 rare diseases listed, I could have it so much worse. My life isn’t on the line and just glancing at me, most days, you can’t tell I’m sick. The invisible part of this illness is both a blessing and a curse. I’m still trying to find a way to bring positive attention, conversation and knowledge to the topic without it having to bring so much sick spotlight attention back on me, does that make any sense? Lol. Being sick has affected me in every way possible. I can find both positives and negatives, it’s proven to be productive and counterproductive all at once, while simultaneously dragging me down the roughest years of my life that I’ve somehow also turned into the years I learned most about myself. It’s most definitely a unique experience, but I don’t think I could go as far as to say that I wouldn’t trade it for the world.

So, as I was brainstorming ideas for how to recognize February 29th this year, I googled Rare Disease Awareness Day 2016. The theme, if you will, just so happens to be about including all the people a disease affects, not just the person who is sick. Perfect! I immediately had an idea for a video and started scouting people out for help. I came up with five questions and asked some of my people to awkwardly let me record them answering them. Since they all rock, I got both my brothers, my mom, two best friends, and a family friend all talked into participating in the video. Score! I told everyone to be as un-rehearsed as possible and I was really looking forward to hearing all the different interpretations of each question.

They haven’t seen it yet, so ready or not, go watch!

 

Hey medical community, did ya catch our drift? 😉🙄

Posted in Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Seizures, Today I Win, Uncategorized

Watch my Week!

This week I decided to try something totally different! I recorded details of my week to show to my specialist I get to see very soon. My mom suggested I turn it into a blog post. My aunt, who also suffers a chronic, invisible disease, agreed that sometimes you have to see it to believe it. I tried taking a video clip from each day this week, without making it an hour long but still getting an idea of things. It’s still quite long, but I wanted to get the point across, so please hang in there! I hope this gives everyone a more accurate depiction of the way attacks come about and the serious toll they take on my body, I wish I could’ve included more. Every time I compare pictures from bad day to post IV, I myself am still blown away. Not all the pictures are pretty and though I only added two clips on my worst days, they’re plenty bad. I wish I would’ve gotten a bit more of the final two days recored, but they were the worst two for a reason.

Each attack differs a bit, sometimes vomiting affecting me more while other times the seizures and so on. This attack’s worst part was the pain. Yes, it’s always painful, but it got extra bad this week. I’m so thankful my ER has been working well with me recently, but I am more than ready to visit my doctor and work out some new options. The first picture below was taken in the ER while waiting on a round of medications, the second was taken right when I got home from the ER.

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(yes, this is one of those annoying videos you have to turn the volume up and down on.)

 

On a final note, since I’m letting the video do must of the talking this time, I want to say THANK YOU to all the people who have shown interested and ordered the shirts I have shared. I have been so excited and surprised by the amount of people ordering to support me. You all rock!

http://www.booster.com/dashboard/campaigns/2832722?status=

 

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

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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, Today I Win

Today, I Win.

Last weekend, I drove in town multiple times for the first time in three years. Some people are going to flip out when they read this because it “isn’t safe” or “too risky” and many other comments that all fall under the judgement umbrella. My parents wouldn’t let me do something that could possibly harm others, and even more so, possibly harm myself. If I was feeling good enough to voice that I wanted to drive, we were going to take that opportunity. I have to tell you, I can think of very few times I was more proud of myself than when I parked the car in the driveway after a smooth trip in town all day. And I know that I have never been as confident behind the wheel as I was this weekend. It was like I was finally gripping independence in my hands, even if just for a short while.

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Later that evening my family and I were on the way to my grandparents house to soak up the perfect weather with pizza on the patio. In the car, my Dad said, “Hadley, today you win.” Confused, I asked him to elaborate. My Dad proceeded to squeeze my shoulder and say, “HM didn’t win today. Today, you can look that monster in the face and kick him while he’s down because HM lost the battle today.” By golly he was right. In that one day, I had found it somewhere in me to not only drive, but to also shop, run down the stairs, and enjoy being outside with the family fishing. It didn’t matter that I was exhausted or that the beginnings of a drooping face were clear, all that mattered to any of us was that I could count that day as a win. And for that, we celebrated.

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Unfortunately but not surprisingly, I dropped hard to the floor that evening and had the most powerful, intense, and long seizure I have had in months. My body curled into the backwards “C” that we haven’t seen in so long and mid-seizure my jaw locked completely open. I can only imagine the intense “we just can’t win” feeling that took over the room as my family and grandparents watched my body violently attack itself, leaving them helpless. In those cases, I guess I’m glad to be unconscious.      

After finally waking up and getting myself to comfort on the couch, Jax, my sweet four year old cousin, come over to chat with me. Just before, he had been egging on a playful conflict with my Dad as he cheered on Kentucky, since Uncle B was cheering on Mizzou. I was expecting a scream of silliness but instead, Jaxson hit me in the emotional department. He asked me why my mouth was stuck open, a question I attempted to answer but totally lost him in the process. The sweet boy climbed up on the couch with me, looked at my hurting face, touched my jaw for just a second and quickly pulled his hand away. I was going to tell him it was okay, he didn’t hurt me when he touched it. I wanted so badly to know what was going through his kiddo of a mind. And then he told me.

“Hadley, why do you get such bad headaches? I want to know why.” As if he knew there was no response possible to that, he curled up under my blanket and let me snuggle up tight with him. Jax has forever been my snuggle buddy, but since his quick change from “my baby” to a “big kid” he hasn’t sat still long enough for many snuggles. As the rest of the family was joining us in the living room to watch the end of the football game, Jax turned back over to me and said, “It’s because of skunks.” With that matter of fact statement I tried to motion for him to give me a kiss. That was a total miss and we settled for an accidental head bump instead. Jaxson Glen, we’ll pretend this is all because of skunks. 🙂

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Although my mom and I’s night didn’t end until we got home from the ER at 2am, having to get my jaw fixed, I was still in better spirits than I am after most days that turn into let downs. Earlier in the night, when I had finally peeled my eyes open marking the end of that awful seizure, I was already crying. As I had slowly made my way back to consciousness I could feel the affect a bad seizure leaves me with, making it feel like it’s possible to have from your hair ends to the tips of your toes raging with hypersensitivity. I was immediately aware that my jaw was badly popped out and locked open. And I knew as soon as I tried to walk my HM side would be dragging and slow for days to follow. I felt each tear hit my cheek as my Dad helped pull my heavy head off the floor. I could feel the stressful mood of the room, while all the excited and positive remarks from earlier in the evening slammed my head. I felt terrible. My dad was helping to prop me up as I cried, more out of frustration than anything. The only words I mumbled to him were, “Do I still win, Dad?”.

“Yes, Had. You absolutely still win.”

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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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Posted in Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, PICC line, port, port surgery, portacath, Seizures, Today I Win, Uncategorized

Ported😬

No one likes needles. And if you do, you’re crazy. At the beginning of this crazy ride needles scared me to death, I would squirm and about make myself sick, just with the anticipation. But as time went on I adjusted. I assured myself that if I took deep breaths and let the nurse do their thing, it would be over quick. I got to be a real good sport, as long as no one would talk during the IV attempt.

But no way it could be that easy. Each time a nurse would inspect my arms they’d comment on the scarce good veins I had to offer. Since I was usually going in pretty dehydrated, I knew that wasn’t helping things. At the beginning of this year I only had a few bad IV experiences to show for it. That was at the beginning. 

In October I started my 15 day hospital stay in Chicago. My first IV ended up infected and really painful. At 2am my night nurse agreed that it had to be changed. After careful inspection she couldn’t get another line started and called the pediatric nurse in to try, he got a tiny IV started, but it would have to do. Being in my hand it wasn’t very protected and by the next day I had knocked it into a nerve. Bye-bye IV #2. My nurses decided a picc line was my best bet, and I was happy to try it. A picc meant I could get all of my meds and blood drawls via that one line. Sweet.

So into the OR I go. Dr. Hickey was gorgeous, seriously. The two nurses were hilarious, but it was my first time getting a “surgical procedure” and the nurse swinging a tall needle full of lidocaine around definitely knocked up the nerve scale. Don’t worry, I made it through, no harm, no foul.

Unfortunately I ended up really sore and uncomfortable, all signs pointed to blood clot. After a quick ultrasound it was confirmed that I had, indeed, already developed a clot around my picc. It was still superficial and was taken care of with daily blood thinner shots in my tummy…ouch!

Fast forward to Decemeber. Another 9 day Chicago hospital trip resulted in a blown vein, and three more IVs. Yay.

 Later that month in the ER a nurse placed a bad IV that ended up infiltrating the medications into my surrounding tissues…not my vein. Infiltrated IVs are PAINFUL!!

Now, skip ahead to March. Yep, you guessed it, another Chicago hospital stay. This one 11 days inpatient. IV #1 was a placed really well in my right hand, but since IVs can only be left in for 4 days it had to be replaced. IV #2 was placed with some trouble in my left hand, but I still got 3 days out of it. IV #3 took 2 tries, but ended up in the bend of my left arm. Unfortunately, the vein was just too small and on day two the line had to be removed. Keep in mind that 3 of the meds I get via IV are terrible for my veins, so as time moves on my veins just kept getting worse. IV #4 was almost impossible to get placed. A last resort attempt earned the IV a spot in the bend of my right arm. The next morning my day nurse came to push my first round of Benadryl. It hurt so bad. Benadryl literally slices your veins and hurts, but usually I just wince. When the nurse reattached my fluids I was doubled over in pain. I knew something was not okay, and myself stopped the fluids from running. I called my nurse in and she checked the blood return, normal for my weak veins, she said. She started trying to flush with saline and I started crying. I had to yell at her to stop. I needed to listen to my body. I’m no IV whimp and this hurt sooo bad.

That was at 10:30 in the morning, by 1:30 that afternoon my nurse hadn’t been back in for any of her rounds or to give any of my afternoon meds I needed. I called in the charge nurse, who just happened to be one of the nurses I’ve stayed tight with. My arm was so swollen I had to cut the bracelets off, it was sore to the touch and a rash had started to follow the line of my vein. Vickki was concerned with my history of blood clot and had that IV out right away. That meant I had earned myself my 5th IV in 11 days. Boo. I left that trip with painful arms, collapsed veins and bad infiltration. No Bueno.


Back home my weekly infusions started and each week IVs were getting harder and harder to start. They were having to use tiny lines which was painful for me, and made the process take 6 hours.

Finally, one Thursday no one could get a line started. Infusion called a NICU nurse just to try. She gave it three shots and ended up blowing all three veins. There was no where left to try. My neurologist ordered another picc line. They set up ultrasound to look for the best placement option. Instead, all they found were tiny unhealthy veins that were unuseable. Ugh. Unable to get my treatment, they set up an appointment to get a tunneled picc in my chest on Tuesday.

I had done my research on all my options and had decided that instead, a portacath would be my best option. I had to fight my doctor on it, but stood strong that was what I wanted. A port is completely under your skin, so it doesn’t restrict you as much as a tunneled picc or Hickman line.  I would be getting a power port placed right under my collar bone. Finally.


So, after two attempts to draw blood and six attempts to place an IV so I could be put out the surgeon decided to place a special catheter. He tented, sanatized, and numbed the site before placing the catheter. He got it all the way in before discovering an unknown blood clot and had to remove it from my left arm. He repeated the process on a new spot in my right arm and finally got it. But it was so sensitive that a nurse had to stand and hold it in place while the meds dripped in.

The port placement takes roughly 45 minutes, mine took almost 2 hours. The first hour was spent trying to get accsses. Ouch. But now the port is in place and healing nicely. Thank goodness!!!


I’ve had it accessed three times now, and it is definitely tolerable compared to the multiple sticks previously. Yay!

    

Posted in Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Seizures, Today I Win, Uncategorized

Mom and Hadley take Chicago!

We survived getting to the big city all by ourselves! My dad sent us off with farewell grunts as he lifted our suite cases out of the car. For the record, mine weighed three pounds less than my mom’s so she carries big bags too(Casey and Sally😉)!Of course our plane was delayed an hour after we went through security and then another hour and a half once we got on the plane. Frustrating!! We were a little worried how me and flying would mix, but I only put on one small show for the crowd. Once we landed and got our luggage Mom was too scared to flag a taxi so we hopped on a shuttle. What was supposed to be a hours ride to the hotel in downtown Chicago took us two and a half hours. If you know my mom….everyone must’ve been running on her time clock that day. 😉 As we battled the front desk with messed up reservations my mom discovered she’d left the folder with all of my forms for the doctor visit on the plane. We finally got everything straightened out and headed up to our room….on the 13th floor of course. We don’t travel in any other style! 


Through the waiting in tight spaces on the plane, to standing forever and again being in tight spaces with a crying baby during our shuttle adventure, and then through the mix ups, my body gave it it’s best shot. I hung in there…at some points I don’t know how. Easily fatigued Hadley plus a day full of travel aren’t exactly meant to be. But we managed. We missed all meals during the day so decided to walk down the block for my first run in with Chicago deep dish style pizza! I gagged the first bite in and settled for garlic bread and veggies instead. We walked the blocks of downtown Chicago where I learned many things!-
1- this girl’s too anxious for big city livin 
2- don’t mark your spot with a Starbucks…there is literally one on every corner
3- the city stinks. Bad.
4- Chicago goes out of their way for the “typical white girl”….everything in Trader Joes is pumpkin spice flavored 

5- Chicago runs on Pepsi products no Dr.Pepper is not okay.



Patience is ones greatest virtue

~Had