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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, family, Health Blog, Hemiplegic Migraine, HM, Just Keep Keepin On, MU Health Care, PCU, PICC line, port, port surgery, portacath, Seizures, SHM, Sporadic Hemiplegic Migraine, support, Today I Win, Uncategorized, University ER, University of Missouri Health Care

Winning.

One year ago today I published a blog titled, “Today, I Win”. Never would I have remembered this date, but Timehop gently reminded me today. I captioned my shared post with one simple sentence, “This is a special one”. Little did I know at the time just how special this post would end up being

As I clicked the post to reread my thoughts I got slight butterflies. Sure, I remember the day, I can tell the story, but I didn’t expect for each word to impact me so deeply. Reading about driving for the first time in years, I could taste the exact newfound independence from that day before I finished my description of it. That feeling has yet to be duplicated since that day, and never again will I feel that exact thing. It’s the day I chose I was going to win. 

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Never in a million years would I have been able to guess just how empowering this statement has become. It’s hard to fathom how much power can be held within three little words. No matter the battle you may be fighting, you’ll need bravery, strength, drive, family and so much more. You won’t make it through any battle without being humble or proud of yourself. Life requires you to have confidence in yourself, but you’ll learn how important a good cry can be. This saying, “Today, I Win”, encompasses each of those traits, but the list doesn’t stop there.

I won’t sit here and say that those are the first and last words I say to myself every day. However, every day I remind myself of it at least once because when times are tough, they are very tough. It’s on those bad days I have to remember how good it feels to always win. When I spent nine months having to drag myself, and family, into the emergency room every week I questioned how I was winning. If I wasn’t living, if I was barely scraping by, could that really be counted as “winning? It didn’t feel like it. But I was. In my hours spent sitting in that waiting room I watched hearts break, emergency helicopters land, and people leaving empty. Even though I was there every week, I also left every week. And I left feeling better than when I came in, which is more than some others can say.

The beginning of this past April, my mom and I found our way to yet another new neurologist. We had been waiting for this date, this appointment and this doctor for close to fourteen months. None of those three things were anything new to us, nor was the anxious knot in our stomach and prayer for help. As he walked through the door we knew Dr. Cheesy was quirky and unique. Some of his very first words were this; “I’ve learned you can’t just look at one thing. That doesn’t work. Specialists will bounce people around and then they’ll end up with me. I’m usually the last in line, so I can’t just pass you on to anyone else.” As The Cheese spent the next hour asking questions, examining and thinking, my mom and I both knew we had just won a big one.

In April and May, just a few months ago, the Today, I Win mindset wasn’t any easy one for any of my family or friends to keep. As I was hooked up in ICU getting a feeding tube, there didn’t seem to be any spot worse. As I laid mostly unconscious for days upon days, the amount of fight, bravery or resources didn’t seem to matter. Through the many tears cried and the confidence in my doctors, there still didn’t seem to be a light at the end of the tunnel. To my family and loved ones it didn’t feel like Hadley was in there. I couldn’t remember my birthday or walk without help. There were some very scary days. After 22 days, I walked out of that hospital with more answers and plans in place. Yet again, I had won. We had won.

Today, I Win has turned into something much greater than myself. It has turned into a mindset and support from so many others. I hope others use this motto to help them through. That’s the beauty of this mindset, it can be made to fit all battles, because we all have them.

Now, today. Today I woke up. It hasn’t been a great day for me, I’ve been struggling, but we’re trying to be proactive in stopping what we know is coming. Today, I drove to the doctor. Today, I met with Dr. Cheesy just as I do every single Monday. We discussed my week, we discussed the current plan and anything else needing to be covered. Today, I had dinner with my family. Today, I am sitting down and posting my first real blog in 3 months. As I write this, I touch the charm on my neck that reads”TIW”, just as a reminder that I am lucky to have so many people fighting to win this with me.

Today, I Win.

Today, We Win.

 

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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