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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, 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/