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

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 #teamhadley, Beating Hemiplegic Migraine, Botox, Chronic Migraine, Daily Migraine, Dystonia, Health Blog, Hemiplegic Migraine, Lidocaine Infusion, Lidocaine Infusion for Migraine, MU Health Care, PCU, port, portacath, Seizures, Today I Win, Uncategorized, University ER, University of Missouri Health Care

FOUR WEEKS

On Friday, May 6th, I got released from a 13 day hospital stay and headed home. Home was where I needed to be. Graham was stoked to have me back, he talked non stop to me as soon as we picked him up from the Bequette’s house and made sure to carry everything inside so I didn’t have to. I was still so heavily medicated my mom just wanted to get some food in me before I went to bed, sweet G talked to me the whole time we ate, even though every minute or so he’d have to ask if I was okay because my head would bob forward into my bowl. Trying to act like I’m okay and it being physically impossible for me to fake it just for him, at a time like that, is solely one of the hardest parts in dealing with this nasty disease. BUT I WAS HOME.

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For the weekend my brothers and pup were all actually so glad I was easily found in my room, they all kept just coming in because they liked that I was in there, and I liked that too. I got to spend the day at my grandparents’ house, like a typical weekend, and get knee deep in the pond with Jax. Kelsey and I resumed our typical Grey’s Anatomy watch party positions on my couch and I got to sleep in MY OWN BED! I was in high Heaven. I’m always complaining about being home too much, then I don’t get to come home for a few days, now I don’t want to leave it! Back to normal felt so good.

On Monday afternoon, the 10th, I went to my check in appointment with my Neurologist where we were supposed to make a game plan. I was pretty aware that we’d be scheduling lidocaine infusions but I wasn’t sure what the details attached would be, such as a scheduling date. Lidocaine Infusions for migraine is a fairly new treatment idea catching on in the world of migraine. These treatments are something I had been researching since August of 2015. I had asked a couple of other doctors about them, one saying he didn’t know and one saying I should give it a shot but that no one around here did anything like it. I had an appointment to travel to a specialized clinic in Texas this winter, but the doctor fell very ill days before I was supposed to see him and he is no longer practicing. I was in communications with a doctor in Washington D.C. that I was referred to that did Lidocaine Infusions for migraine, until I first met with Dr. Cheesy who suggested trying those before I even got the chance to ask about them.

Dr. Cheesy told me I would be hospitalized for 5-7 days in the ICU, the ICU being just a precaution as it is still a relatively new idea and Lidocaine is a serious drug that can seriously affect your heart. After discussing the idea a bit more at my appointment that Monday, Dr. Cheesy asked me when I would like to try them. I sarcastically said, “I’d start tomorrow” and literally laughed. He said, “Okay, can you be here by 11 am? I was going to have you come in tonight but I figure you want to go home and get your stuff together.” I seriously had to ask him if he was joking, most doctors take months to schedule the smallest of things.

He was serious. Tuesday, May 11th, I checked back into the hospital. At first, I wasn’t too bothered that I was having to come back in. I was glad that my new doctor was continuing to prove to be a “do-er”  and try new things. I was glad to be trying something that I had put so much research and back hours into, and interested in trying something new that had the potential to completely cut back all things hospital to a reasonable amount. I knew I needed to try it. Dr. Cheesy told me he didn’t expect to see drastic results with me until around day 5, because I’m complicated.

What I didn’t think about, however, was that I had just been sent home with several extra things to help control the pain and movement issue of the jaw on top of having my regular HM rescue medications that I try. Because the Lidocaine was a new treatment for me, I could only take my daily medications that couldn’t be skipped. Rescue medications I know work to help abort an attack, like Benadryl, were avoided in order to be able to differentiate the difference between the lidocaine making a difference or not. Unfortunately, because of this, the timing just so happened that an attack hit right on day two of me trying the new infusions. Since rescues weren’t an option, by Friday I was in full attack mode and the jaw locked open.

Without a doubt that was the most painful time my jaw has ever been locked open. It had just so recently been reset that my jaw wasn’t even supposed to be opened that far. As soon as it happened I started bawling and then looked at my grandma and said, “I’m not supposed to open my mouth all the way for three months. It’s not supposed to do this!” As soon as it happened, Kelsey, my best friend, jumped up to call the nurse, then sat in my bed with me for hours. After getting X-rays we knew my jaw was dislocated again, but it was Friday night by the time we knew it would have to be reset so I had to wait, again, until the next day. I had to be taken off of the Lidocaine before I could have the sedation medication used in order to comfortably have my jaw reset, anyways, so that night Friday we stopped the Lidocaine starting the wait. My doctor ordered that I have a NG feeding tube placed again, for the first time in the trip I was trying to keep the tears in and I was having a tough time staying positive. Just days before I had gotten my previous NG tube out and had said I wasn’t ever going to get another one again, but here I was less than a week later, hoping that the metal weight was correctly placed in my stomach. While my Dad left the room for bit I had a heart to heart with my nurse who let me cry it out, then  got me back to my conquering attitude and placed the tube.

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The next few days went okay, I wish they would’ve been better. I got to resume the lidocaine after 48 hours of being removed from it but I wasn’t allowed to have my drip increased for several days, originally the plan was to have it increased daily, putting me at a high dose by the end. Lidocaine can seriously affect your heart so every six hours I had to get an EKG, thankfully those continued to come back within normal range. Because I was stuck at a lower dose than expected and my heart was handling the medication well, I did not have to stay in the ICU like planned. I spent the whole ten day trip on the PCU unit, which is where I spent a majority of the week before so I was thankful for familiar faces. 

On Monday, while still receiving Lidocaine, I was scheduled for to get Botox in my jaw. However, this required that my jaw be fully opened again, which of course dislocated it immediately seeing as it had only been two days since the ENT team had reset it Saturday. All of my doctors were expecting it to lock open but felt that the Botox was worth the shot, so the ENTs were waiting for me upstairs, after hours, to reset my jaw by the time I made it back to my room. Thankfully, this time I got to continue on the Lidocaine drip even with the Versed and Fentanyl, because my neurologist had already decided not to increase the Lidocaine dose any further.

The last four days of my stay I was quite miserable. I was placed on an “NPO” diet, meaning that I couldn’t eat or drink anything except for water. That didn’t really bother me because I couldn’t eat if I wanted to, my jaw was extremely painful, swollen, and continuing to spasm. My doctor explained my jaw situation to me in this way; “What happens when someone tears their ACL? They immobilize it, have surgery, and continue to keep it immobilized with no weight for several months. That’s what happened to your jaw. Except you just “tore your ACL” or dislocated your jaw three times in two weeks, and “had ACL surgery” or got your jaw reset three times in two weeks. The only difference being that your jaw isn’t immobilized.” After the first reset of my jaw I was told to expect a three month recovery, three months before I could eat normally again or not have pain and movement issues. Three months is now nine months. I was thankful for the ACL comparison because that made me feel less like a baby, and it also gave me a good way to explain the ordeal to others in a way they may better understand.

The best part of hospital stays is having visitors. This time I actually remembered most of them, even better! My sweet best friend came and spent several hours every. single. day. She sat in bed with me and didn’t say a word when I needed to cry because I hurt, she kept my ming off things playing UNO and Hangman for hours, she communicated for me when I couldn’t do so for myself and she stayed the night with me when she knew my parents needed a little break. I wouldn’t be doing as well as I am today if she weren’t around this time. My other friend came on several of her lunch breaks, friends surprised me and some came after work. The social support continues to blow my mind. I’m so so thankful.

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I got to go leave the hospital on May 20th, ten days after being admitted. I left with my head pain at a level 7 out 10. The Lidocaine had kept my headache level at a seven for about three days in a row, this was something my family, Dr. Cheesy and I celebrated! We all knew this was a big step for me. Unfortunately to consider the Lidocaine infusions successful,  I would’ve had to walk out of the hospital with a level 1 or lower headache. I was super bummed that didn’t happen and I’m having to cross of yet another treatment. But I got to try it! So at least now I know! I’m very fortunate to have access to these treatments and very thankful for this amazing new doctor. Until Dr. Cheesy can say that I am “stable”, he is having weekly appointments with me. WEEKLY. It’s amazing. Every week we get to talk things over with him, switch any medications around that we may need to, and discuss the next plan of action. Though I have been super bummed that I haven’t been doing great, I have been living off of IM shots and other rescues, I now even have to wear a pain patch, I haven’t been in the hospital for ONE MONTH. I couldn’t be more excited about that!!!! I’m still on a mostly liquid diet. I think I’ve tried a baked potato from every single restaurant around. lol and I have to carefully plan my days and my shots. But Dr. Cheesy has kept me out of the hospital for FOUR WEEKS, and that is four weeks longer than any other doctor has been able to do for a year now!!!!

This is such a long post that continues to ramble on and on but I needed to get this way overdue update posted!

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

Hadley; noun

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

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

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

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

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I hope this reached some level of making sense.

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

October 9th. One Year.

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

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

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

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

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

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

3) PICC lines and edocscopys are hardly surgical procedures. 

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

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

Willis Tower in Chicago!

 

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

    

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

Hard Rock Cafe!!

  

 

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

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

Order Here!

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