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

Winning.

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

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

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

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

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

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

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

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

Today, I Win.

Today, We Win.

 

Posted in #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 #teamhadley, Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Just Keep Keepin On, Seizures, Today I Win, Uncategorized

#28 “It’s Real.”

To those who make us feel doubted, lonely, crazy, devastated, pathetic, and embarrassed,

We have something to tell you. We consist of the people you have let down. We are the patient that “just has headaches”, not the next that has something serious. We are the patient that does not fit your checklist, so of course we are crazy. We are the patient you checked your watch and walked out on after 15 minutes, while we were in mid-sentence, because you had your next client. We are the client that’s symptoms just “don’t line up”? That is us. The American Migraine Foundation knows us as the 36 million migraine sufferers in the United States, that is over 10% of our population. We are the 90% of chronic migrainers unable to work on some level. The 14 million U.S. sufferers of chronic daily migraine, they are our peers. We are the ONE in every ten thousandth person to have Hemiplegic Migraines, familial or sporadic. And it is our turn to talk.

The Mighty recently started a conversation via Facebook. This hot topic quickly received the input of 494 migrainers. The question? “To our readers who live with migraines, what do you wish people could grasp about this debilitating and often invisible condition?” The status immediately had hundreds of people, all commonly in pain, describing their biggest insecurity linked to their disease or bad health. I quickly read the polished article with a carefully picked 15 comments we wish everyone could understand. I know I, and so many others, appreciated the honest depiction of something so commonly dismissed.

So, Dr. Big Wig, mean “friends”, gossip greedy townies, and family that refusing to understand; the top five answers are what we usually want to slap in your face.

  1. “It’s not just a headache.” Stephanie Richards
  2. “Chronic Migraines are on a totally different level than the occasional migraine. You end up living in fear of when the next one will hit.” – Joey Caylor Spencer 
  3. “It’s not something I can control, and it’s not my fault.” – Sara Byk
  4. “When I know it’s coming, I get desperate for anything that will stop it.” – Melissa Goodman 
  5. “Excedrin Migraine is a complete waste of time if you have an actual migraine. And yes, three days later, I’m still on the same migraine. And no, I can’t just tough it out.” – Jen Briggs 

It’s still weird to me when I read a comment from a person states, or countries, away from me and they are describing my attacks to a perfect T. That’s how much we struggle. It takes just one physically incapacitating day to wreck our emotional well-being, leaving us miserable, in pain, and feeling lonely. Until we read again comments of those in the same place as we are, that is when we can grasp some sanity and mental relief. Surely I’ll adjust at some point and not keep getting impressed by someone understanding me. Is this just me? lol

I clicked the link that brought me to the Facebook original post and an impressive amount of comments to read through. Every time I read “put your own thoughts here” chats within my support groups, especially my HM group, I get this odd hollow cringe feeling deep in my stomach. It’s like I’m nervous, hoping to find others to relate to, but also feeling guilty that I’m hoping for someone else to have these scary experiences. Silly, yes, I know. Reading each of those comments, so many hitting too close to home, I kick myself for letting it make me emotional. However, it never fails to get me a little each time. Though it made me so close to tearing up(…maybe I did), post after post exposing some of our hardest insecurities was amazing to read. Discussions with fellow migrainers= story comparisons, doctor references, success stories, and learning more. Even though it took me a million screen shots to pick just five favorites, I finally did so. I felt like these people’s comments even went with a tone similar to my own…

  1. “They are the worst. Anyone who says different has never experienced a migraine where it feels like your head is about to split open and some alien is going to pop out.” -unknown
  2. “Even light and air hurt. “My skin feels like somebody sand papered it. It’s not something one can just snap out of.” – Theresa Belcourt
  3. “If you tell me to take excedrin one more time I’m going to pull my hair out…after I finish getting sick and crying.” – Ambra King
  4. “I’m not faking when I still go to work or try to be productive. I still have to try to live my life, even though I have a chronic condition.” – Trina Theisen
  5. “Complicated(usually hemiplegic) and debilitating lasting two days w/o abortive treatment. My MDs prepare me with abortives to prevent ER trips. However, sometimes the pain and symptoms can be as severe as a craniotomy w/ cortical resection. And dehydration can be severe.” –FB comment   *although this isn’t worded the best, and I have no idea what a cortical resection means, The point is still direct to HM*
  6. “It’s different for everyone. So your sisters cousins uncle’s ex fiancé that had them, they ARE NOT the same as mine.” – Kim Robinson

The honest emotional support is vital to all of us. But we are also always craving new information and the latest updates. It’s nice to have people to pass around conversation for those little knowledge points, too. We are always learning more. We could bet all of you know-it-alls and doctorates with who knows more about our condition, or migraines in general and we’ll win every time.

Sincerely,

Those of us who are tough, brave, fighters and migraine know-it-alls.

Check out The Mighty’s article here👇🏼

http://themighty.com/2016/03/what-migraines-really-feel-like-from-people-who-get-them/

Posted in Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Just Keep Keepin On, Seizures, Today I Win, Uncategorized, Vlog

Rare Disease Awareness Day 2016🤒🤕😷

Each year, the last day of February represents the only day of the year rare diseases are recognized.  With nearly 20 million Americans living with a rare disease, you probably know someone fighting one of these battles, yet their day won’t get half the recognition that national Margarita Day or Pet Day gets. Each of us unfortunate enough to know the importance of this day would much rather celebrate Kiss and Make-Up Day, August 25th, or National Chocolate Covered Anything Day, December 16th. It’s still awkward for me to claim importance to a title with the words “Rare” and “Disease”, but it’s important so I’m going for it.

That being said, of the close to 7,000 rare diseases listed, I could have it so much worse. My life isn’t on the line and just glancing at me, most days, you can’t tell I’m sick. The invisible part of this illness is both a blessing and a curse. I’m still trying to find a way to bring positive attention, conversation and knowledge to the topic without it having to bring so much sick spotlight attention back on me, does that make any sense? Lol. Being sick has affected me in every way possible. I can find both positives and negatives, it’s proven to be productive and counterproductive all at once, while simultaneously dragging me down the roughest years of my life that I’ve somehow also turned into the years I learned most about myself. It’s most definitely a unique experience, but I don’t think I could go as far as to say that I wouldn’t trade it for the world.

So, as I was brainstorming ideas for how to recognize February 29th this year, I googled Rare Disease Awareness Day 2016. The theme, if you will, just so happens to be about including all the people a disease affects, not just the person who is sick. Perfect! I immediately had an idea for a video and started scouting people out for help. I came up with five questions and asked some of my people to awkwardly let me record them answering them. Since they all rock, I got both my brothers, my mom, two best friends, and a family friend all talked into participating in the video. Score! I told everyone to be as un-rehearsed as possible and I was really looking forward to hearing all the different interpretations of each question.

They haven’t seen it yet, so ready or not, go watch!

 

Hey medical community, did ya catch our drift? 😉🙄

Posted in Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Just Keep Keepin On, Seizures, Today I Win, Uncategorized

Abnormal Psychology

I opened my Psychology textbook a couple weeks ago to read about Biopsychology, Neuroscience and Human Nature. I had to write a paper for my abnormal psych class about sympathetic division and parasympathetic division, basically our bodies’ fight-or-flight responses. However, instead of taking an hour to read that specific section and write my paper, I spent my time reading the entire chapter. The intro paragraph to the chapter gave me chills as I scanned over it. You could’ve been fooled into thinking the textbook wrote about the first day I had an attack, using nearly exact depictions I have used before.

The textbook wrote; “Then, on a cold December morning, Dr. Jill Bolte Taylor’s life abruptly changed. When Jill first awoke that fateful day, she noticed a painful pounding in her head that felt like a severe headache. As she tried to go about her normal morning routine, however, she began to notice odd changes in her body and mind. Stepping into the shower became a focused effort in coordination. Her body felt strange; the sound of water was a deafening roar, and the overhead light seared her eyes. Jill could hear her family’s voices, each syllable like a pen drop, but was not able to respond no matter how hard she tried. As she tried to think rationally and figure out what was happening, she couldn’t keep her thoughts on track and felt two steps behind. …”

I wrote in a past blog; “October 26th, 2012, I was a sophomore in high school. I woke up that Friday morning in a weird daze, like I was two steps behind everyone else. Headaches were not a new thing for me, but that day it was a headache like never before. I was not myself. I chalked it up to cheering in the rain and not eating well the night before. I figured my asthma was acting up and I was on the verge of being sick, nothing a weekend of rest couldn’t kick. In second hour, Señora Johnson asked me my favorite sport to play. I was to respond, in Spanish. But I couldn’t. I remember the feeling like it was yesterday. You know in cartoons when someone’s talking but the person listening feels like it’s far away or out of focus? That’s exactly how I felt. It was like I could hear each letter of what she was saying but I physically could not respond. She gave me an awkward, like, two minutes to respond. About a minute after I couldn’t come up with a response, and a friend jumped in to save me, I passed out for the first time…”

Dr Jill, had a stroke that day. She was taken to the hospital, tested, scanned, diagnosed and treated. She still spent 3-4 months returning to her normal self, but says she can remember the feeling of that morning like it was yesterday. I too remember the moment like it was yesterday except, I was not tested or scanned(at first), I was shown how constipation was the answer, instead. I can’t help but wonder what changed that day. Or what could’ve been different over the next few years if I had had tests run that first ER trip. It’s scary how much could potentially slide through the cracks based on one doctor’s opinion. What if I’d been having a real stroke? That’s where my essay prompt about doctors having a God complex came in. Yeah, I had fun with that one.

Learning about the brain works and all things psychology is my favorite. If I could be a real life Criminal Minds team member, I would do it in heart beat. But it is kinda weird having discussions about things that hit close to home. After having discussions, reading the above, and writing two essays; one about doctor’s God complex and the other about the sympathetic nervous system I was loving my psychology class. Then, last week, I had an appointment with a pain management doctor. He talked with my mom and I for probably an hour before we began discussing possible ways he could help. I really liked the doctor and appreciated that he was aware how serious and complex my case was. Dr. M presented the idea of a nerve block. But he happened to start explaining the works of the sympathetic nervous system! It was so cool to be able to have knowledge of what he was discussing and all the things this system does for our bodies. 

STB

The next day, Dr. M set me up for a Stellate Ganglion Nerve Block. The procedure is performed by putting a needle right into your neck. Lovely, right? Actually, it wasn’t as bad as I thought. I had made myself nice and anxious about it, until I realized the picture I had come up with in my head was of an actual meat thermometer being jabbed into my carotid. Probably another nod to Criminal Minds, there. The hope of the SG block is that it helps my jaw and the major right-sided swelling that this doctor found. Unfortunately, we know it won’t help the root of the problem, HM directly, but maybe these few pieces of it. Any-who, with zero local anesthetic, the doc went for it. I knew he was successfully in the middle of my nerve when I got instant make-you-sick-pain. All in all the whole procedure was pretty short and sweet. The nurses were fantastic, but underestimated my experience as they were sure to explain that a X-Ray would not hurt, and just took pictures. When the X-Ray picture popped up on the screen, two nurses started whispering, worried about something in my vein. It was actually just my Port-a-cath line that you could see plain as day, which I thought was awesome! We have yet to see ground breaking results but are hopeful that with a few more blocks we will soon. I go back in this Friday!

IMG_6940
Here just shows the site in relation to my port. Site of block is just bruising, slightly.
Posted in Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Seizures, Today I Win, Uncategorized

Watch my Week!

This week I decided to try something totally different! I recorded details of my week to show to my specialist I get to see very soon. My mom suggested I turn it into a blog post. My aunt, who also suffers a chronic, invisible disease, agreed that sometimes you have to see it to believe it. I tried taking a video clip from each day this week, without making it an hour long but still getting an idea of things. It’s still quite long, but I wanted to get the point across, so please hang in there! I hope this gives everyone a more accurate depiction of the way attacks come about and the serious toll they take on my body, I wish I could’ve included more. Every time I compare pictures from bad day to post IV, I myself am still blown away. Not all the pictures are pretty and though I only added two clips on my worst days, they’re plenty bad. I wish I would’ve gotten a bit more of the final two days recored, but they were the worst two for a reason.

Each attack differs a bit, sometimes vomiting affecting me more while other times the seizures and so on. This attack’s worst part was the pain. Yes, it’s always painful, but it got extra bad this week. I’m so thankful my ER has been working well with me recently, but I am more than ready to visit my doctor and work out some new options. The first picture below was taken in the ER while waiting on a round of medications, the second was taken right when I got home from the ER.

ER Post ER 2 post ER 1

(yes, this is one of those annoying videos you have to turn the volume up and down on.)

 

On a final note, since I’m letting the video do must of the talking this time, I want to say THANK YOU to all the people who have shown interested and ordered the shirts I have shared. I have been so excited and surprised by the amount of people ordering to support me. You all rock!

http://www.booster.com/dashboard/campaigns/2832722?status=

 

Posted in Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Seizures, Today I Win, Uncategorized

Mom and Hadley take Chicago!

We survived getting to the big city all by ourselves! My dad sent us off with farewell grunts as he lifted our suite cases out of the car. For the record, mine weighed three pounds less than my mom’s so she carries big bags too(Casey and Sally😉)!Of course our plane was delayed an hour after we went through security and then another hour and a half once we got on the plane. Frustrating!! We were a little worried how me and flying would mix, but I only put on one small show for the crowd. Once we landed and got our luggage Mom was too scared to flag a taxi so we hopped on a shuttle. What was supposed to be a hours ride to the hotel in downtown Chicago took us two and a half hours. If you know my mom….everyone must’ve been running on her time clock that day. 😉 As we battled the front desk with messed up reservations my mom discovered she’d left the folder with all of my forms for the doctor visit on the plane. We finally got everything straightened out and headed up to our room….on the 13th floor of course. We don’t travel in any other style! 


Through the waiting in tight spaces on the plane, to standing forever and again being in tight spaces with a crying baby during our shuttle adventure, and then through the mix ups, my body gave it it’s best shot. I hung in there…at some points I don’t know how. Easily fatigued Hadley plus a day full of travel aren’t exactly meant to be. But we managed. We missed all meals during the day so decided to walk down the block for my first run in with Chicago deep dish style pizza! I gagged the first bite in and settled for garlic bread and veggies instead. We walked the blocks of downtown Chicago where I learned many things!-
1- this girl’s too anxious for big city livin 
2- don’t mark your spot with a Starbucks…there is literally one on every corner
3- the city stinks. Bad.
4- Chicago goes out of their way for the “typical white girl”….everything in Trader Joes is pumpkin spice flavored 

5- Chicago runs on Pepsi products no Dr.Pepper is not okay.



Patience is ones greatest virtue

~Had