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

Winning 365 Days

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

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

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

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

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

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


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

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Infusion Day!

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

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

 

 

 

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

nine.twenty-eight. twenty-sixteen.

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

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

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

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

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

I’ve missed you all!

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Posted in #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 #teamhadley, Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Just Keep Keepin On, MU Health Care, port, portacath, Today I Win, Uncategorized, University ER, University of Missouri Health Care

Started with NO. Now YES with hope.

Hey guys! Before I even start the post I need to say a huge THANK YOU to the so many people that have sent cards, flowers, gifts and all my Hallsville peeps that wore #teamhadley shirts or purple for me. Plus every awesome visitor I’ve had wether I was awake to see you or not 😉 Support like that is what gets you through things like this.THANK YOU.

When I first knew I was going to write this blog I thought it was going to about the following things; The fear of not knowing what to do. The frustration of self-worth from one ER doctor, even with multiple doctor notes and go aheads from many different doctors, of all sorts. The pain, me ranking a level 9 which is hard for me to do as I won’t say level 10 pain. I sat in that emergency room for 9 hours without relief, crying. Which continued to leaving my dad more and more frustrated and incredibly helpless as “he watched his baby girl crying for hours.”

The Neurology resident was trying to work so hard for and with us, looking back at it now, probably also doing way more behind the scenes than we were even aware of. We were all of the emotionally examples mentioned above, plus I reallyy needed the pain of my jaw being locked open to be taken care of. By the time the Neuro resident got me officially admitted to their floor, where they could make all the calls, only the night shift was around, which tends to make things even slower. I didn’t sleep an hour that night, the nurses rounded hourly and my nurse noted that I was awake every single time. The next morning a whole flood of neurologists and their Attending plus my doctor, Dr. Cheesy we’ll call him, everyone wanting to know a different question and have me move this eye or wiggle this finger. Dr. Cheesy felt that the better solution would be to leave me symptomatic and run some tests towards my jaw first. At this point my jaw had been locked open for around 24 hours, without food, drink or anything. They put a NG tube in that morning and I spent my day getting numerous tests, many that I’d not had done before. A NG tube goes through your nose down into your stomach, little did I know for the next seven days that would essentially be the source of all my nutrition

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48 hours. My jaw had now been locked for 48 hours. Dr. Cheesy stops by to let me know he learned what he needed to from all of yesterday’s testing and he and the rounding Neuro Attending had agreed to send me to ICU where I could be closely monitored while given a lot of medication. One of the neurology doctors mentioned that by jaw my be dislocated but didn’t tell us that was for sure or not. I arrived in ICU, shocking everyone at my young age. They started hooking me up to everything. Next time you go to a hospital room check out how many plugs and switches there are, then double it in the ICU. They gave me medication and my jaw still wouldn’t unlock. I’m pretty sure I finally let myself get all upset about it that night buut I also don’t remember all of that day perfectly.

72 hours. I was plain miserable. My whole family was. We’d been living extra on our toes for three days and still nothing had worked. The ENT team let us know that my jaw was dislocated and they would perform the procedure to correct it under conscious sedation. This is where I loose basically all memory for a number of days. I know my whole family was there, I’m not sure if I know my brothers were there through remembering them or being a told a funny story of their time there. I know Kelsey walked in and held my hand, which made me cry because I knew she wasn’t done with school yet.I know I cried a lot. And apparently I asked for the whole family to cram in for a selfie, I’ve still yet to see the picture.

But really this is where things got serious, for the next 10 days, they were messing with my medications so much and my body needed to heal too, I guess, I don’t hardly have a memory of any those days. The testing is previous days paid off giving me a diagnosis of dystonia of the jaw. Dystonia has many different names, depending on the part of your body that it affects. It can be the disease that you suffer from, or, more commonly they said, is a symptom of another disease. Making the questioned spasming and locking of my jaw, diagnosed as a type of dystonia, still a symptom of my HM. This is all so much more than a migraine. Something new to learn about! Because of this tightness and the re-setting of my jaw for the following days my doctors kept me extra-heavily medicated in attempt to calm those areas down for an extended period of time. Those were the scariest days for my parents. I just spent most of my time sleeping and not moving an inch. I don’t know when I left ICU and went down to PCU. I actually don’t remember waking up in the Progressive Care Unit for a first time.One of my parents stayed with me and met with the doctor every day then made it back to work and left me with grandparents for a few hours.  There were scary times, when I didn’t know my birthday or who my dad was or couldn’t walk myself around the halls. My sweet brother came to visit me on prom, which I kind of remember but am so thankful he did for me. I had to learn how I was going to eat things at for while without being to open my mouth much which is how to syringe-thingy came about and my mom had wayy too much fun with it. I hear I had a steady stream of visitors, I wish I was awake and aware enough to talk to or remember everyone. I remember some quicks hi’s when it turns out I slept and they were there for a long time. But Chris, I ate that quesadilla as promised.

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Parker: best picture ever! Hadley: Just finds in camera roll.
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Mom was pretty excited to try feeding me applesauce towards the end stretch!

The point is the pain, fear, frustration and helplessness that we walked in the doors with, instead of just being said no to, it was passed on. New eyes looked at it. Dr. Cheesy and other Neurologists, other doctors, picked their brains. What was created was a wonderful line of communication, new ideas, Hope.

We have Hope on our minds and say peace out PCU nurses, we’ll miss you!

 

 

Posted in Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, MU Health Care, Seizures, Today I Win, Uncategorized, University ER, University of Missouri Health Care

YES finds a way.

A couple of months ago the way my mom and I were treated at a local hospital, one that we depended on and begged for answers, was absolutely NOT okay. I applaud my mother for keeping her composure that night as we sat fearful, confused and angry. I mean angry. I have used explicit detail to describe some horrible experiences to many of you, yet that night was the most scared I have been in my entire health journey. We needed help. I needed help. But instead it felt like we were being suffocated by health system politics and the poisonous words of one doctor. Though I wish I could call that business and each person involved out for everyone else to gawk at, I knew that wasn’t purposeful. Instead, I waited until I could write this post with a positive light to be shined on it. Never did I think two months later I would have such a positive post to write that I knew I couldn’t cram every awesome detail in. But, here I sit.

Dear Doctor

Walking into the University of Missouri hospital in the middle of night, deep into an attack, with so many unknowns and even more emotions wasn’t something my mom or I felt like we could tackle that night. The second we walked in the door, my aunt, who normally works weekend nights and it was Tuesday, was sitting in triage. I happened to glance that direction trying to get a feel for the new place I would probably be getting to know quite well. I did the quickest double take ever when I saw Shelly, who immediately pulled me back and began the triage process without question of what brought us there. I was quickly assigned a nurse and doctor. As we waited for the doctor to come in my mom and I looked at each other, communicating the deepest hate for this process without having to speak. My sweet doctor came in and immediately reminded me of Grey’s Anatomy doctor Arizona. ❤  As we talked she took a second to stop and say, “Honey, why did you wait so long to come in?” With responses from my mom and I like, ohh if you even knew and big sighs she ended with, “People come in here for the silliest things. This is not silly. Don’t wait so long next time.” My mom called my grandma back crying, an hour before she had called her out of question, this time all she had to say was, “They listened”.We didn’t have to tackle anything that night, we just had to tell our story and instead, they tackled it.

Two trips later, the receponist checking people in didn’t ask why I was there, instead said, “Hemiplegic Migraines, right? You don’t forget a teenager who looks like they’re having a stroke.” Again, we were shocked at the level of care. That night on-call neurology visited me. Who ever woulda thought to call neuro down for a neuro patient in the ER, huh? Lol. The neurologist and his attending, who I couldn’t take seriously thanks to my brother’s new persona, Raj, both examined me concluding that yes I was most definitely weak and suffering from a Hemiplegic Migraines. They also noted the swelling of the right side of my face. In fact, all the doctors wether PA or attending that came into contact with me examined me. Ground breaking. Worries of my high heart rate were spread, and after the third person came in to make sure I wasn’t keeled over with chest pain and my heart rate was indeed that high, my mom asked what a HR should be. The answer? Under 100. Mine? Sitting pretty in the 150-160’s. That trip was a long one and the list of attempted medications was quickly growing to match in length. I pleaded my apologies to my nurse as I was so frustrated that my medical team kept trying and my body just would not give in. My nurse responded with, “Why are you apologizing? I’m sorry we haven’t helped you yet.” Tears. I was admitted that night in hopes of more recovery where they could continue to monitor me and help me. It had been a long night so my aunt swung by to check on me and offer some humor, everyone thought my dad was my significant other. Why does that ALWAYS happen in hospitals?😂  I was given steroids every six hours to help the swelling. My old neurologist once looked at my swollen face, and after swearing to him I wasn’t self harming, concluded, “Your muscles are probably just fatter on that side.” I kid you not.

Every time we’re forced to make that trip we cringe at the gamble it is. But really, so far, these people haven’t made it a gamble. I’m treated like a human being in crazy unfair pain. I told my last doctor, “unfortunately I come in here a lot.” She said, “Well I completely understand why you do.” I’m not used to my vitals being monitored and taken seriously, so seeing how high my heart rate and blood pressure can get each time is eye opening, and also probably means that that has been the case for awhile. Unfortunately, the “other guys” would just turn the vitals machine off when it sounded, or better yet not hook me up at all.

I seriously have a note saved on my phone with quotes of how these doctors and nurses treat me, mostly because we’re just waiting for the other shoe to drop. I wish making a blog with quotes from my old doctor compared to quotes from my ongoing experiences was acceptable, or I wish I could just pack this post even more full of examples of the care I am receiving. It feels like a whole new system. I’m also thankful to have had my aunt advocating for me for so long, more than I ever knew. I come into contact with ER staff that has heard stories about this for awhile, so they know I’m not just really good at faking. I never thought I’d be posting about such excellent local care, I just pray that it continues. The University of Missouri Health Care slogan reads, “Where YES finds a way.” and my goodness have they achieved that.

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I have an appointment coming up in about a week, so cross your fingers, eyes and toes!!!!!

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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, Just Keep Keepin On

Just Keep Keepin On

I find myself stuck wide awake at 2am, again. I’ve gone through all the tricks you’re “supposed to do” to cure insomnia. I go down the list most nights, guess what? None of them really work. Hopefully my mom and Paula got more out of our two hour sleep class at Mayo than I did.

I sleep best with a TV on, even though that’s a big NO. I need the sound and general distraction to keep my mind from wondering a thousand miles a minute. If I make it through the nightly Friend’s marathon on Nick at Night I usually turn the TV off and try just music. Rarely does that work. Then starts the list of ridiculous things you can find me doing in the early AM hours; yoga, breathing exercises, stretching, mindfulness, oxygen treatments, ice, moving to the couch, moving downstairs, peppermint headbands. All of this on top of sheets freshly washed in Lavender and a handful of night time medications that would knock out a giant. Yet, here I am. Wide awake. Luckily, my favorite time to write is after midnight! Lol.

Tonight, however, is an extra rough night. The HM monster is in full swing. After a painful seizure this evening and shocks sending a jolt from the base of my neck through my fingers and toes, my right arm and leg are completely numb and paralyzed. All the while I swear I have ice picks sticking out of my face and in my eye. Having to skip my Tuesday infusion is going to be extra rough this week.

This is a completely accurate depiction of how the inside of my head feels. Thanks Snapchat. Might be a tad too graphic for this. Oh Well.

I wish I could explain just how odd it is to have zero sensation on half of your body. I tried running my hand under hot water tonight, just to see if I could bring some feeling back to it. Nada. If I wouldn’t have been watching my hand under the running water, I wouldn’t have been able to tell you that was happening. Being numb is such an uncomfortable feeling that is impossible to get used to. And then you think, “how is it uncomfortable if you can’t feel?” I guess it’s more mentally uncomfortable. It’s been quite a long time since my arm and leg have been paralyzed. I went several months where they would just get extra tingly, my leg would drag occasionally, but even that wasn’t a constant when my attacks were hitting.

Unfortunately, in the last few weeks the numbness, weakness and paralysis that screams stroke to so many, have been frequent and worrisome. Usually starting in my finger tips, the pins and needles feeling all HMers know too well has started to quickly spread all the way past my shoulder. Last week, we began noticing that as that feeling was becoming more frequent, soon after my right arm starting spasming and jerking out of my control. I tried my muscle relaxants, those had no effect. Eventually, the spams chilled out by themselves, which we noted as a good sign. That was, until my arm ended up paralyzed for the rest of the night. Luckily, when I woke up the next morning it was back to full mobility and almost complete feeling had returned! That didn’t last long. Boo.

Then, we have my leg. My leg has always shown more signs of HM than my arm. Last year it was fully numb and paralyzed for three months. Yep, awful. During bad attacks it was still dragging, and that was one sign that the Hemiplegic days to follow would be in full force. But in the last week or two, we’ve seen more signs of weakness. Several times, out of nowhere, my leg has completely given out and caused me some ugly falls. Not that I need extra of those. Two nights ago, I was walking through the kitchen when it totally randomly landed me in a heap on the floor. From the tips of my toes to my hip I had no feeling, but I was still able to move it normally, so I just ignored it best I could. Again, the next morning it was back to normal.

I hope I’m proved wrong, but sadly I’d be willing to bet I don’t wake up good as new tomorrow. Seizures have been rough all night and I’m still dragging my leg when I try to walk a little bit, or having to use my left hand to pull my right arm into a comfortable position. Trying to type this one-handed is actually slightly comical. Well, and slightly frustrating. I keep telling my right hand to reach for the letters and nothing happens. Ugh. It’s actually extra weird to have my leg numb because I damaged a nerve in my left leg with a shot a few months ago and have lost complete feeling in half of my left thigh.

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So, this is actually the part of my left leg that is constantly numb. Weird how you can see the parts that get goosebumps and the parts that don’t, huh?

I’m a mess. A painful, numb, exhausted, stuck, mess. And for tonight, complaining about all of that is okay. But not tomorrow! Tomorrow I have to get up, know it is a new day, and try all the secret tricks of making it through another attack.

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

Today, I Win.

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

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

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

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

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

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

“Yes, Had. You absolutely still win.”

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Posted in Uncategorized

FAM[ILY]

I know that I’m lucky to be blessed with such supportive parents. They have to drop whatever they’re doing and run me to the hospital or doctor more than I would like to admit. We spend hours reading and rereading site after site begging to find more information, new home remedies, relatable stories. My mom and I stalk the IHMF Facebook page for their daily Hemiplegic Facts and support group pages for threads that we can add our input to. We blow up my Dad’s phone with articles he should read in his nonexistent free time, while he blows up my Columbia neurologist’s phone for my weekly infusions. No matter how tired, how busy, or how stressed my Dad is, at the end of the day he comes upstairs and spends more nights than not sleeping on the couch with me at the end of every rough day. For three years we had every medical hunch checked out and walked out of countless doctor offices sick to our stomachs, still empty handed. My mom and dad have my back through every low time and every high.    
 My little brothers never complain when they have to keep the lights off and the volume nearly silent because I’m having a rough night. I feel incredibly guilty every time my mom and I have to skip a game that my brothers are so proud of. I only made it to two of Parker’s basketball games this year. Two. Yet he never complained that we weren’t there for him. I do let him ramble on about all the ridculous calls, so that helps a little.😉 Parker was so stoked to turn 16 and get his license, yet he respected me and downplayed it since he knows I don’t get that luxury. Sweet Graham brings tears to my eyes when he worries so much. I know this crazy stuff scares him and nags at him more than I’ll ever know, but I am so so proud of him. I may not have big brothers but my little brothers take care of me better than I could’ve imagined. Parker and Graham have had to grow up much faster than fair for them.

   
 My grandmas both put so much time into helping nurse me back to health. Sis and Dama spent a whole week in Chicago with me and didn’t mind one bit. Dama spent hours making sure I was comfortable while Sis brought the laughs, Lily and braided my hair of course! Even though I’ve been Spencer’s least favorite niece for years, he took me Chicago sick and all. I was so glad he was with me! Taking care of me is a group effort. I’m so thankful for my relationship with Vanessa. Anytime I have a question or need help understanding something, she is the first person I go to. I had a complication during a hospital stay and she was the one person I wanted to talk to, I trust her more than almost anyone. My Uncle J would do anything in his power to help me, but I love and appreciate how easily he can make me feel better by laughing and taking some weight off my shoulders. And while nothing is better than Lily and Jax therapy, they obviously don’t understand. But I think that’s the beauty and relief in spending time with them. When I have a seizure they tell Jax that I’m napping. One day, I was trying to convince him that we both needed a nap. He looked up at me, with those eyes I love so much, and said “Hadley you take a lot of naps”. Oh the honesty of a four year old! I refuse to believe anyone has a family more supportive than mine. 

     

  
     But you know what I love about my family more than all of that? They treat me like a normal 18 year old whenever possible. My mom and I, sometimes too similar for our own good, still have yelling matches on the regular. My Dad and Parker joke that they have to send us to separate floors of the house and take cover. 😂 Kudos to my momma for dealing with my overly emotional teenage self! My dad still wants to harass any boy that breaks my heart and let’s me curl up with him in my Daddy’s girl moments. Then again, last week he was yelling at me for a stupid tweet and bickering with me over a fight that I had to have right then in there. Teenage girls are just SO much fun, right parents?!

   
 Graham is nine years old and it never fails that whatever he’s bouncing around doing is annoying the heck out of me. No Graham, asking me 15 times to watch Star Wars isn’t going to change my answer! Parker is just absolutely ridiculous, honestly. He loves to spend forever in the after-midnight hours telling me jokes that have him hysterically laughing and me rolling my eyes at the immaturity I swear I no longer possess. (Jokes on me, I’m still plenty immature!) Parker can’t do anything quiet, as everyone knows. The other night I was in bed on my phone with my back to the door. I rolled over and Parker was TWO INCHES FROM MY FACE with an insanely creepy ninja turtle mask on. I’ve never cursed so much. Damn ninja turtle mask.

  
I’ve grown such a special relationship with my Grammy these last few years. She makes me laugh until I cry, wether I’m laughing with her or at her, mostly at her memory.😉 I hold our Chicago trips, over nights, heart to hearts, and painting sessions so so close to my heart. Grammy you rock those neon leggings! There’s no memory I have with Papa, my hot yoga lovin grandpa, that doesn’t send me into a laughing fit. Especially when he attempts to ninja jump over the ottoman! Jaxson is my boy. I always look forward to our regular greeting routine: hug, kiss, and exchanged I love yous. Nothing makes me happier than the innocent, infectious, perfection of that kid’s belly laugh. 

   
 (Jax, you have my heart❤️)

So what about me? I struggle, boy do I struggle. I would be blatantly lying if I said I’ve always been able to see the positives, and if I always focus on the positive. I get angry. Man, I have spent so much time angry the last three years. Too much time angry. But I love to laugh that deep in your soul, ugly, man-like laugh. I always stay up too late on Twitter, snap chatting my every move, and adding to my “life goals” Pinterest board. I still keep up with the Kardashians and binge watch the Bachelorette even though my dad threatens to block it on my TV. Kels and I have Grey’s Anatomy watch parties, which is typically the highlight of my week. I get giddy over flirty boys and have spent plentyyy of time bawling like a huge baby over my “broken heart”. My life no longer revolves around me being sick. It can’t, it just cannot. 18 has been the hardest year of my life. This January was quite possibly the hardest month of my life and that’s no exaggeration. Guess what that means? 19 can only be better! I better get all my crappy out of the way, because after August 12th it’s all going to be rainbows and butterflies, right!!?? 
Apparently the bachelorette has me in a uniquely silly, mushy mood since I’m watching and writing at the same time, the perfect Friday night! I’m going to end this overly sappy post with overly sappy pictures of my fam bam. But first, don’t forget that I’m still an emotional, ridiculous, normal college freshman. I’m way thankful for all the support and all the people craving an update and willing to learn, but I’m also perfectly happy with some gossip and normalcy. “But the Lord stood with me & gave me strength” ~ 2 Timothy 4:17

   
 

   (These people are my world.🌎)