Chronic.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~Hadley

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

 

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.

 

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.

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​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?

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.

 

 

 

365

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

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

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

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

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

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

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

I have kidney stones and infection in this picture.

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

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

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

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

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

 

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

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

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

Tis the Season to be Jolly❤️

The holiday season is no longer near, but most definitely here!  I haven’t been Scrooge or ruined any festivities with a bah humbug attitude, but this year I’ve had a hard time getting immersed in the spirit of the season. Usually I am the very opposite, wanting to be knee deep in everything Christmas, the day after Thanksgiving. I’ve jokingly called people Grinch if they aren’t as excited as Buddy the elf and me. 🙂 I have no specific reasoning and nothing negative holding me back, it’s just different for me. I still excitedly decked our house out in decorations while listening to Christmas music and enjoyed our first family Christmas of the year just as much as I always do. But I’ve yet to do any Christmas baking… or Christmas shopping. I should probably get to gifting since Christmas is only five days away. FIVE DAYS. I think this is part of my problem, how did Christmas sneak up so quickly?!

All of that being said, my attitude and spirit have changed over the weekend. Personally I feel that in the recent months there has been so much hate, negativity and uneasiness. Between a controversial spotlight on inequality, police forces, the recent election and so many more troubles, felt by all locally and nationally. I can’t help but believe that each of us in our nation have been impacted in some way. I’m not blind to the fact that each year we face many large hurdles, nor do I wish to debate my beliefs. However, I do feel confident in my feeling that so much negativity has torn a gap between relationships, communities and even our country.

This weekend I found some silver linings to appreciate. Locally, we had unexpected bad weather that rolled in Friday afternoon. Ice covered roads caused some intense turmoil in our city, and those surrounding us, due largely to the lack of preparation for these conditions. My city compares to New York City, Chicago or any other huge city in no way, yet we also aren’t tiny. Many people’s attempts to make it home, even just from one side of town to the other, resulted in hours of sitting in traffic, not moving for many hours at a time. The amount of crashes surpassed any norm our winter weather has caused in many many years. Many students were left stranded at schools when bus drivers’ stressful attempts to get them home were impossible and parents couldn’t make it to their child. Multiple schools’ faculty stayed with students until early hours of the morning, some even over night. I heard story after story of people graciously opening their homes, giving stranded citizens a warm place to stay and meals.

Though there was a lot of bad surrounding the circumstances, it made my heart happy to hear the many accounts of selflessness and compassion given and felt by so many. After reading several news reports of the weekend chaos my appreciation for service workers has grown. Trucks attempting to spread salt and clear the roads worked into the early morning hours, just to pick up where they left off hours before. Though some believe that these workers could’ve done a better job, I don’t want us to forget that the weather was two steps ahead of them from the start. This wasn’t caused by slacking workers, rather to do with the unexpectedness of the situation. When you tack on the facts that ice is much more difficult to clear and control than snow, and that using salt to clear is logically less effective when temperatures are in the single and negative digits. It goes unspoken that the work of emergency crews is a blessing and necessity. While yes, this is their job I think it is often a thankless one. Not only did they have to take countless calls that were dangerous each time, I can also imagine the stress their families felt the whole time they were taking these risks. As for the bus drivers, many parents have the biggest thanks to them for doing everything in their power to get all kids home safely.

As I spent my Monday in the infusion center, nurses talked about their scary drives home over the weekend and still risky drives to make it into the hospital at the start of the week. While many people left work and commitments early, several nurses continued to work out of dedication to their patients. My nurse said she thought about calling in Monday morning, as she has a long commute and has to travel on back roads that are obviously less of a priority to clear than the main, busy roads. Instead, she knew her patients would need her so she left her house at 4:30 am, just to make it in on time. I’ve said it before and will say it again, the dedication of nurses never fails to grow my appreciation for them more and more. My last stop in town for the day was our grocery store. All aisles were packed and register lines long, yet I heard no complaints. There were small kind gestures from many just throughout people grocery shopping. As I waited in the longest line at the pharmacy I was genuinely surprised by the patience of customers and quick, helpful, friendliness of the pharmacists.

I know this is unrelated to my typical focus and posts on my blog, and the descriptions mostly local to myself, but I couldn’t help but share. The true reason of this holiday season is so often preached, and very true. To teach that giving is greatly more important than getting is a spirit that should stay important all year, however there is nothing wrong with this being the time that generous actions are shown most. Selflessness is such a rewarding feeling to both feel and witness. So, my friends, take an opportunity to give, recognize the smallest deeds and attempt to find a silver lining in your life to be thankful for. I wish everyone a blessed, loving, and fulfilling Merry Christmas, Happy Hanukkah, or holiday season.❤️🙏🏼

A Small Thank You

To my sweet friends,

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

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

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

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

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

~Had

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. 

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.

 

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!

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.

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.

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.

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!

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

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.

Parker: best picture ever! Hadley: Just finds in camera roll.

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!

 

 

#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/