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, 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, best friends, Chronic Migraine, Daily Migraine, Dystonia, family, Health Blog, Hemiplegic Migraine, HM, SHM, Sporadic Hemiplegic Migraine, support, thankful, Today I Win, Uncategorized

A Small Thank You

To my sweet friends,

Thank you for never leaving my side. Thank you for being the two that will never let me break. You’ve been there to catch me when I fall (literally 😉 ) and always celebrating the smallest of wins with me. Ashley, you’ve been right next to me since the very beginning. That’s actually quite literal as I was sitting next to you the first time I passed out. You spent so much time sophomore year dropping everything to help. The first time I was ever hospitalized you were sure to bring me anything I needed, including your company. Kelsey, you came to sit with me every night that trip for hours. Neither of those things have changed. I quickly learned how deeply everything was hurting both of you. Through the seizures, unknown and loss of “old Hadley” I could see the same pain in your eyes that mine reflected. Just as quickly I learned never to take either one of you for granted.

There have been so many canceled plans and important things to you I should’ve been at but couldn’t make it, not a single time have you ever gotten upset or made me feel any more guilty. Instead, you’ve learned the details of Hemiplegic Migraine and can recognize when I’ve reached my limit, often having to snap me out of being so stubborn. Without complaint you’ve had so many lunch dates or hours of waiting in the hospital with me. I can’t tell you how much I hate feeling like our friendship is often one sided as I haven’t been there for you way too many times.IMG_4506

Kels, you took time out of your always hectic schedule just to fly with me to Minnesota for my Mayo Clinic visit, in the middle of January. You ate Dairy Queen for dinner with me after a rough first day, because obviously ice cream is the best medicine. One of the only things I can remember when I was in ICU this spring, was waking up to see you there holding my hand. Even though I knew you were in the middle of finals week and couldn’t stay in town for much longer than 12 hours. But you were right there. How many people get that much support from one person? It cannot be many. After moving back home for the summer you spent the next 22 days in the hospital with me. You never missed a single day. I would sleep for hours and you’d still be there when I woke up. I’m not sure what we spent more hours doing, playing Uno or trying to untangle wires and stop beeping? You stayed up with everything each doctor said, being my voice when I couldn’t be my own. If our roles are ever flipped, know that I’ll sit in your hospital bed letting you actually cry on my shoulder, and I’ll be right there to hold your hand before or after any procedure. You will always be the Christina to my Meridith.

Ash, you may not have gotten to travel with me, but I know you’ve been willing and wanting to every time. The countless hours we’ve spent FaceTiming mean just as much. You make sure to always keep me laughing, which is an equally important medicine as ice cream. 🙂 This is why our ice cream dates are always necessary and successful. I’m so so glad you’ll talk to people like Bonnie for me and play along when saying “yes, I was in an accident”, is just much easier to explain.Thank you for not just the hours spent in the regular hospital, including coming late when you get off work, but also for the long nights we’ve gotten stuck in the ER. I’m pretty sure you know just as much about HM as I do, making me confident you would make sure I was correctly taken care of in any circumstance. You have the biggest heart and are constantly giving to me in any way I ever need. There is never a dull moment, no matter how awful I feel I end up laughing so hard every time. I absolutely love you and can only imagine the things we’ll continue to get ourselves into forever.

To the both of you, I wish thank you held so much more significance than it does. Thank you for never leaving me lonely or broken down. Most of all, thank you for always being able to hold onto apart of, again, my “old” self after I lost that. I pray that everyone have at least one friend as great as you. I think that’s important. Though I don’t want either of you sick or down, I do hope that someday I can repay you and be just as good of a friend back. I love you both so so much!

~Had