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.

giphy 2

 

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?

crazy thankful
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 Beating Hemiplegic Migraine, Hemiplegic Migraine

Anniversary or Un-iversary?

Three years. 36 months. One thousand, ninety five days. Three grades. The cliche “time feels like it has flown by and not moved at at once” has never rung so true. October 26, 2012 I had my first seizure and never looked back. Since that first day in Spanish class, I can count on my fingers the number of seizure or attack free days that I have had. In so many ways I can’t convince myself it’s possible that this all started three short years ago, on the other hand I cannot believe I just used the term, “three short years ago”. It’s really odd to think back on that day, no memory of mine is so pristine. Waking up that Friday morning I felt awful but attributed that to having cheered in the rainy district game the night before, eating/sleeping poorly, and a fall allergy asthma attack. When Sean greeted me that morning, he said “Whoa, not feeling too hot?” Third hour I let him know I had passed out, he texted back “Atta girl!” These are perfect examples as to life before seizures. Before seizures became the norm, telling someone I passed out carried the assumption I just fell asleep at a bad time, commenting on the unexpected meant me looking like I got it by a truck, now the unexpected is me not looking like a character from The Walking Dead. My first trip into the ER, ever, came that Sunday after a second episode. The ER doctor didn’t run a single blood test or scan, instead he came in and racked it up to constipation. The guy literally squeezed as if he were extremely constipated and my dad literally laughed like this guy was an actual doctor. Funny enough he is now an ER doctor that I would prefer over some.

That whole first week I was so sick my everything was exhausted and I had pain deep in my bones. Many people suggested I get tested for mono, that never happened but I now wish we would’ve pushed harder for that. There are some recent understandings that a mutated strand of Mono can cause Sporadic Hemiplegic Migraine. That being said, when we consider the week before, at my aunt’s wedding, everyone asked if I was sick, at the time I didn’t think I was but six days later…    just something more to ponder😉

mixedemotionsgiff

A lot has changed in the last year, I would say more than before but I’m pretty sure I said that last year. lol. We’ve learned just how hard it is to live with a progressive disease. A significant dip in my cognitive function has been clear the past few months, at least in the memory department. I used to be able to recall the tiniest details for years, now I ask the same question over and over without noticing I’ve already gotten the answer. It’s so uncomfortable when I’m mid conversation with someone, like a nurse, and out of the blue I truly cannot recall a signal detail of the conversation, what I was going to say or what had just come out of my mouth. Days that happens I typically end up remembering zero of. But positively, I think I’ve grown most in my attitude. My understanding, learning, and mood have all changed significantly this year and I’m glad to say I’m confident that I have grown in that department.

Needless to say, when this all started we had no idea that we’d be wishing for 30 second pass-outs in the future. Three years ago, doctors told me I was dehydrated and stressed. Three years ago, my psych consult listened to all of my baggage and ultimately encouraged me to go back to the medical side of things. Two years ago, doctors labeled me just another teen girl with a conversion disorder and swore in 6-12months, psych would have me healed. Two years ago, well that psych consult was bad on my end. 😯But, she saw through my frustration and still told us to go back to the medical side. One year ago, doctors comforted me and promised to know “Hadley”, not just be another doctor unable to pick me out of a line up. One year ago, the psych PA ditched the consult out of shock that doctors had played hot potato with me like that, while the Dr applauded my ability to self advocate and be so knowledgable. I now wish my previous physicians would’ve bet their medical licenses on me being magically healed way back when.

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This is another video contest prompt; “Show us your fight with HM this year” I think it was the perfect thing to get together, a video is the only way to truly show my special support over the year. Going through the pictures and videos made me a tad emotional, of course. I often am disappointed in myself for not being able to solve my own problems. Then again, I’m impressed that I get up and do life on some of the days I do. I never knew a blog would require me to take so many more selfies😂 That being said, the selfies themselves were a reminder that I’m not fighting for my life and to be thankful I’m able to get available treatments. There’s always someone out there who has it worse than you. 👇🏼

https://www.youtube.com/watch?v=Oj8d1FPT7kw

My editing skills are still in the learning process. Winners of this contest get rewarded medical bill scholarships.

So thank YOU, for reading this blog, for taking the time to send an encouraging comment, for going out of your way to come chat with me, for checking on my parents and brother because they’re living this too. And thanks for those of you who have taken it upon yourself to follow IHMF updates and want to learn. I can’t wait to read this post next year and laugh at what I’m good at then, and see what I need to get back to. Always learning!!!


What I’ve gotten myself into this year:

  • 5 Chicago Trips
  • 50 days inpatient in Chicago
  • PICC line placement
  • Port-a-cath surgery
  • At least 20 IVs…probably way more
  • ER trips…uhh I can’t count that high.
  • 31 Infusion treatments
  • 5 ultrasounds
  • 2 MRIs
  • 4 CT scans
  • 2 MRA scans
  • 6 EKGs
  • Endoscopy
  • Botox
  • Diamond Headache Clinic
  • Mayo Clini- Rochester

download

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

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

Order Here!👇🏼

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

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

October 9th. One Year.

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

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

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

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

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

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

3) PICC lines and edocscopys are hardly surgical procedures. 

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

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

Willis Tower in Chicago!

 

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

    

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

Hard Rock Cafe!!

  

 

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

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

Order Here!

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