Posted in #teamhadley, 2018, Beating Hemiplegic Migraine, Botox, celebrate, Chronic Migraine, Daily Migraine, Dislocated Jaw, Dr. Cheesy, Dr. Lucchese, Dystonia, Ellis Fischel, Ellis Fischel Cancer Center, ENT, family, Health Blog, Hemiplegic Migraine, Hemiplegic Migraine Research Study, HM, Infusion Center, Infusion for Hemiplegic Migraine, Infusion for migraine, invisibile illness teacher, Invisible Illness, Just Keep Keepin On, Lock jaw, MU Health Care, port, portacath, Rare Disease, Rare Disease Awareness, SHM, Sporadic Hemiplegic Migraine, support, thankful, TIW, Today I Win, University ER, Winning 365 Days

Chronic.

Sorry ahead of time for the length of this post!!! Making up for lost time.

If you are one of the almost 45% of people in our country that has been diagnosed with a chronic illness, then you know that your life will, more than likely, forever include more doctor visits than the average person, daily work put into your health, and setbacks.

Let me be the one to tell you straight….set backs are hard. This past week I had the first  set back I’ve had in awhile, breaking a record time without  one in my crazy health rollercoaster. They suck. After ten months of progress a bad day hitting you can really catch you off guard. And when it hits, all of the complicated emotions that come with having a chronic illness come slamming back too easily. It feels like a punishment to have a record you worked so hard for have to be started over. You emotionally question the “WHY” all over again, even though you logically understand the reasoning behind your disease. A set back is an instant, often unexpected, always unwelcome reminder that You have a chronic illness.

For me, this past Monday at 5:00am I was woken up in pain. I shot up out of bed immediately realizing what that pain was before I was completely awake. My jaw. Dislocated. Immediate tears. The pain of my jaw being locked open makes me sick to my stomach. It feels like an ice pick is stuck stabbing me in the jaw joint, while my nerve sends a shooting, electric shock like, pain down my jaw line. It can often be worse than the pain of my actual migraine. I knew my week had been a bad one, knew that the pull in my face had gotten progressively worse over the weekend and that the tingling in my right hand was slowly beginning to move up my arm. But I had made it all week and through the weekend, why couldn’t I make it just five more hours to my infusion that would get me back on track? I knew what that meant the day had in store for me. But I stayed hopeful that my infusion would be able to solve my problem, especially since it hadn’t happened in so long. I texted my neurologist at 7:00 that morning and he responded three minutes later with a plan. With my regularly scheduled infusion appointment still a couple hours away, and time not being on my side in these circumstances, my mom called the infusion center to see if we could move my appointment earlier. As usual the infusion nurses, willing to do anything to help, agreed and told my mom to bring me in as soon as she could. While my weekly cocktail did improve my migraine pain and other symptoms it unfortunately didn’t solve my jaw issue. But it was a start.

This is where I brag on the care I get in the infusion center at Ellis Fichel, and this being one of the reasons I wanted to post a blog. The nurses there are amazing. Easily all taking spots in the top ten nurses I’ve had over the last five years. Within ten minutes of getting to the hospital they had me back in a room, with my port accessed and the first round of my medicines administered. That timing doesn’t happen in the slow moving world of the hospital!!! An hour into my infusions I receive a second dose of one of the pushed medications. My doctor had told me to check in with him with an update at that time. I texted him, but my nurse went right to work on getting ahold of him to make sure he got the update.

Dr. Cheesy told me to finish out my infusion and then check back in with him. We were all disappointed because that meant waiting at least three more hours before taking the next step. It was a long three hours. My nurse was doing anything she could to make me more comfortable. As soon as my magnesium drip finished my nurse pushed my last round of medicine and started calling my doctor. My infusion was complete. My jaw was still dislocated. I would have to be admitted. Immediately she did everything in her power to speed up the process to get me upstairs. All I wanted was to get admitted early enough in the day to have my jaw reset before the next day. That’s all everybody wanted. The nurses let me stay in my dark room for the next few hours while we played the waiting game, instead of having to wait in the big admissions area surrounded my tons of people with my mouth stuck open. Even after my nurse was off for the day, one of the others kept in contact with my doctor until they were ready for me upstairs. They even wheeled me up themselves. I’m telling you these ladies are all the best of the best. I’m lucky, and my whole fam is incredibly thankful for such phenomenal care and support every single week. I couldn’t find better care if I tried. If you’re in Missouri, making a trip to the Ellis Fischel Cancer Center Ambulatory Infusion Center at the University of Missouri Hospital is a choice you wouldn’t regret. Their slogan “Where YES finds a way”, is so accurate. I could continue to go on and on about them but I should probably move on or this blog will be entirely too long. 💕


Back to the update! Once I was upstairs the neurology resident on call came in fairly quickly. That consult went about as hilariously ridiculous as normal. Why do they never read a patient’s chart before they see them?! As my dad comuinicated for me he mentioned that I hadn’t eaten anything since dinner the night before. This being an important fact mostly because I couldn’t eat, but also because I wouldn’t have to wait for food to be out of my system before the ENTs could put me under for the necessary procedure. The resident looked extremely confused as he asked, “Why can’t you eat? Is it because your mouth is too dry when you put food in it?” It was our turn for my dad and I to look confused. Sir, please open your mouth and without closing it try to eat.🙄 Let me know how that works out for you!!! The meeting with the on call neuro attending went about just as well, I’m pretty sure after repeating ourselves multiple times we taught him what Dystonia was. But he did finally agree to page the ENTs. Crazy  how much reading a patient’s chart beforehand to see the instructions put in by the doctor hours before can help!

Per usual, within 20 minutes of being paged the ENTs arrived for the consult. The doctor put gloves on to exam my jaw as he talked to us about the process and what has worked best in the past. Without wasting any time he left to get things ready for the procedure. Within the hour the team was back in my room having me sign the consent papers for anesthesia before taking me to the OR for the procedure. I repeat, all with in ONE hour. The ENTs are also one of the best teams I’ve worked with.

I was greeted in the OR by a nurse I’ve had before. He said, “Young lady you and I have done this before really late one night.” He quickly celebrated with me that that was ten months ago, and the last time I’d had to have it done. I watched the ENT doc wrap layers of gauze around his thumbs as he got ready to reset the jaw, and remember the anesthesiologist pushing the first medicine to put me out. Next thing I know I’m waking up in recovery with the nurse next to me, ready to help with the pain. It’s a different kind of pain than the unbearable electrocuting pain while being dislocated. They have to wrap ace bandages around my head to stabilize the jaw, making sure it doesn’t slide right back out. However, I immediately noticed the wrap was much tighter and more uncomfortable than normal. It bothered me through the night almost as much as the pain from my jaw itself. At one point the nurse paged the doctors asking if we could loosen the wrap just a little bit. But they turned her down saying while I was still unconscious they had wrapped the bandage too tight, but when they took it off to fix it, my jaw slid right back out and had to be reset all over again. No Bueno.

When I got back upstairs my dad and boyfriend were waiting for me. Sean volunteered to stay with me for the night, because he’s just good like that. 🙂 It was honestly a much more rough night than I was anticipating. Worse than most times before. Although the ENTs had ordered pain medication for me, which has always been necessary afterwards…seeing as I had just had a mini “surgery”, the neurologists had taken the orders off and only let me get one dose of Tylenol the whole night. It was horrible.

Sean is a rockstar. He turned on 50 First Dates in an attempt to distract me. He had to continually pause it doing whatever he could to try to help the pain. I was hurting. I was sick to my stomach, probably because I hadn’t had anything in my system besides medications for the last 24 hours. I was scared I was going to throw up and send my jaw right back out of the socket. After calling my nurse in for help we were both equally as frustrated that the neurologist had taken all rescue medications out of my orders so the best solution my nurse could offer me was trying to eat saltines. And I’m still surprised how uncomfortable and bothersome my wrap was. After I got to take it off 24 hours later my neck was bleeding from how irritated it was. It was such a hard night.

Now, let me take a minute to get sappy…which I’m typically not. Sean is the funniest, kindest and best person. Without hesitation he is always there, willing to hang out in the hospital, stay up all night and sleep in the awful hospital recliners. Everyone deserves a Sean. 😊❤️

​At the end of the day, I shouldn’t really complain about the minor bumps in the road. Although it took a minute for the neurologists to come around, the two teams did get the main goal accomplished, getting the jaw reset before the next day, pretty quickly. That was huge for obvious reasons, but also because that meant I only had to spend one night stuck in the hospital. Which is huge!! Back to those infusion nurses being awesome, the nurse I’d had the day before dropped by with a card and bracelets wishing me to feel better quickly.


We’re not exactly sure what brought the attack on this time. The weekend before my jaw had popped and sent that electric shock down my jaw line out of the blue, making my jaw sore for the week. But I had also just gotten my Dystonia Botox a few days before, we wonder if that triggered something for some reason. We won’t ever know for sure. It sucks that I have to start over with what I can eat and that drinking out of a straw is painful again. I’m bummed that I have to start my record of being attack free over. But I’m thankful and amazed that I did make it 10 months without a full blown attack. I’m lucky that we’ve found ways to make my chronic illness much more bearable. Any progress is appreciated and I’m still trying to find a “win” in each day…big or small. I’m still in pain everyday. I continue to fight these invisible illnesses everyday, as I will my whole life. But for right now I’m not just fighting them, I’m beating them.

If you made it to the end of the little book I just wrote, good for you! I appreciate it…and also need to get better at summarizing more. It feels good to post again 🙂

~Hadley

This summer has been good to me! Just some pictures for fun 🙂

 

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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.

 

 

 

Posted in #teamhadley, Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Dystonia, family, Health Blog, Hemiplegic Migraine, HM, Just Keep Keepin On, MU Health Care, PCU, port, portacath, Seizures, SHM, Sporadic Hemiplegic Migraine, support, thankful, Today I Win, Uncategorized, University ER, University of Missouri Health Care

365

Friends! Again, it has been a few months too long without a blog published. Sorry!

April 28, 2017 has marked the date of a new anniversary. In the last almost five years October 26, 2012 has been the biggest anniversary on my calendar. That date being the day my life literally changed. Who knew one single day could change my entire future? I don’t know how or why, but that’s exactly what happened. For five years that October day has rolled around, leaving me unsure if it should be celebrated as another year survived, or defeated that it was just another year fighting my body so hard. But this time, there is no question that April 28th should be celebrated!

One year ago, I went through living Hell in the emergency room(shocker), and was admitted to the neurology floor of the hospital. At the time, we were frustrated that we would have to spend likely a few days admitted, stuck in the slow moving world within the hospital. Through a few nights with no sleep, and equally as many days without being able to eat, I couldn’t help but feel defeated as my new doctor chose to run some tests before working to stop my attack and fix my locked open jaw. Being given a feeding tube wasn’t something I ever considered needing, and it intimated me, the hospital pro.  So many tests were lined up for me that I would get back to my room just to be taken for the next in line. I was very thankful for my portacath as nurses drew enough blood that I questioned if I was going to run out. Physically, I felt like I was at my lowest point, and it seemed that mentally I was close as well. I would soon be proven wrong.

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Through the hard work of my doctor, the determination for answers, and prayers, lots of prayers, we could see a light at the end of the tunnel. I had been working with Dr. Cheesy for one week. He had seen me one time. He walked in on the third day with answers…and yes, that is plural. As he told us that my jaw was dislocated I immediately felt a bit of weight lift off of my shoulders. For almost a year, and nearly weekly, no doctor had taken the time to x-ray or look past the surface of my jaw being forcefully locked open or my face swelling for hours and even days. My parents and I shared with the doc that we had been told I was self-harming, my parents told to stop taking me to get medicine and all would be well, and best of all; that the muscles on one side of my face were simply fatter than the other. He chuckled, and admitted some doctors suck. Immediate tears welled in our eyes as The Cheese sat down explaining something called Dystonia. I’d read about a few dystonia cases but didn’t know any details. He told us that Dystonia is a disease of the muscles. It can be a whole disease in itself but is more often a part of a bigger picture. A disease of the muscles easily makes sense being a factor related to Hemiplegic Migraines. I was officially diagnosed with dystonia of the jaw, which causes the muscles in my face and jaw to spasm and pull so hard my jaw gets dislocated. It made us sick to our stomachs that the reason my jaw was locked open so often for a year was because the high doses of medicines were simply getting my jaw to slide partially back into place, never actually relocating it. All it would’ve taken was one x-ray to show the truth. Instead, my jaw joint had gotten destroyed a little more each week. ONE x-ray.

I spent the next 22 days moving between the neurology/surgical ICU and the Progressive Care Unit. The PCU is the step-down unit to ICU. Within 14 of those days my jaw was reset three times. For 15 days I relied 100% on a feeding tube. The general rule after getting your jaw reset is that it will take three months for it to heal, three months before you can eat most foods again. My family was so excited when they could start feeding me limited foods through a syringe. We celebrated that. Near the end of my stay a therapist had to come teach me how I was going to eat. I was 19 and learning how to eat again. I was so embarrassed that I was going to have to eat baby food. I was angry that if I wanted a burger or pizza, really anything good, it would first have to be blended. I never wanted one of those bad enough to eat a junk food smoothie. Instead I lived off of mostly Smoothie King and baked potatoes. 😉

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Between jaw issues I was also being aggressively treated for the Dystonia and Hemiplegic Migraines. My doctor was attacking my attacks more within a few weeks of working with him than anyone in the last four years. Because of that I was poked, prodded, tested and medicated constantly. I remember very little of those 22 days and went through days just being out cold. This is when I truly hit mental and physical rock bottom. I could do nothing on my own for myself. Family and friends visited on their lunch breaks or evenings just to take me on walks around the floor because I couldn’t do it on my own. One night after trying so hard to get me to wake up and get with it, my nurse asked my birthday and I couldn’t remember. He asked who was sitting on my bed. I couldn’t tell him it was my dad. Being the biggest daddy’s girl that I am, I couldn’t tell that it was my dad sitting on my bed squeezing my hand. (crying now) I have a foggy memory of that, but it feels like I was an outsider in the room watching it play out, not that it was actually me.

Thinking about all of these cloudy memories brings back the many emotions from those days, feeling just as raw as they did a year ago. However, it makes me almost as emotional reflecting on the past 12 months. As last summer came around life continued, but I was skeptical that there would be any change. By September of this year I had had a total of three seizures, and only been in the hospital two times since May. One of the two ER runs being for kidney stones, I actually appreciated going in for something “normal”. After September I wasn’t admitted to the hospital again until January, spending five more days in ICU, and then in March for only three days. I’m still shocked that I’ve had only four hospital trips in a year, compared to last year when I was making trips nearly weekly.

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I have kidney stones and infection in this picture.

I haven’t published a blog in awhile partially because life has been a different kind of boring. Who knew boring would be a good thing?  I take advantage of my Mondays spent in the infusion center racking up hours of sleep that I’ll miss later in the week, while the medicine necessary for me having a good week is delivered through my port. On top of that I still rely on medications daily and have my fair share of intramuscular shots to take. I continue to try new tricks and treatments of all kinds. Attacking my body with so much medicine isn’t something we’ve ever been huge fans of, but after nearly five years of trying everything, any therapy that ignites change is worth it. And change we have seen. Everything has changed.

Through this whole crazy ride, one lesson I’ve learned is to seriously appreciate and celebrate the little things in life. I know, so cliche. When my brother was a sophomore in high school I was only able to attend two of his basketball games throughout the entire season. This year was his senior season and I only missed two games of the whole season. Thank goodness for ear plugs and special migraine glasses! To make that small win a little sweeter, my dad is also the high school basketball coach. Killing two birds with one stone, I was finally the one traveling always to support them.

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I’m still a little bummed that my doctor insists I not take more than a couple credit hours in school, but I’m trying to accept that it doesn’t matter how long it takes to graduate. Eventually I will be a college graduate with a diploma that represents the fight I won to get there. It’s refreshing to think about my future with dreams different than hopes to have enough energy to make it through the week.

I’ve talked before about missing my old self and working so hard to earn that self back. Though many things are different, more and more of that Hadley I missed so much is coming back. I’m back to babysitting on the regular, something I have always loved to do. I have a real job!!! Being able to work a few hours a week is so satisfying. I don’t have to cancel nearly as many plans last second and have greatly appreciated going out with friends, or simply being able to handle life outside of my four walls. A lot can change in 365 days.

I’m proud of myself.  I’m happy.  I’m winning.  I’m thankful for our great God above. He always has a plan.

 

p.s. If you’re wondering about the best baked potatoes, I’m your girl. 😉

p.p.s Adding a link to my “special migraine glasses”👇🏼

https://www.theraspecs.com/?utm_source=bing&utm_medium=cpc&utm_campaign=**LP%20-%20TM-%20General-%20HV&utm_term=TheraSpecs&utm_content=TheraSpecs

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.