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FAM[ILY]

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

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

     

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

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

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

   
 (Jax, you have my heart❤️)

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

   
 

   (These people are my world.🌎)

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HM- You Are Evil.

“HM is plain evil”- the exact thing I said to my mom, the first time I was able to talk, in over 24 hours, tonight. It’s been a rough month for me, both mentally and physically. My Chicago trip went unexpectedly and after two weeks in the hospital I found myself in the ER again, tonight. I guess not every day, or week, or month can be a good one, right?
Spencer, my grandma and I road tripped to Chicago the first week of June. As my friends attended SLU 101 or Mizzou Summer Welcome the past two weeks, I got reunited with hospital life. I was a little bummed at first, since I had been boasting that this would be a Botox only trip, no need to be hospitalized. I braved Botox on my own, not a hard task since the doctor is so easy on the eyes! The PA walked in the room more concerned about my vitals than with my check list of questions. Lana called my doctor in, who greeted me with “Hey Hadley. I’m admitting you.” Boo.

  
  (Appt & Botox ready!)

Unfortunately, my second day there I had a bad attack. A negative that I am now actually very thankful they saw. As I was in my hospital bed writhing in unbearable pain, physically unable to close my mouth, throat spasming and not allowing me to swallow, entire right side numb and drooping my nurses, the charge nurses, and rapid response team were gawking at my vitals. Dr. Diamond was called, on her off day. She immediately became incredibly worried. I was soon aware that I was hypertensive. My heart rate was raging at 199. You see, the big risk with HM is stroke. In fact, many people are first incorrectly diagnosed and treated for stroke before correctly being diagnosed with Hemiplegic Migraine. 

  
When my blood pressure and heart rate were looking better I went for a MRA. I had a MRA in October when being diagnosed with HM, it’s basically a scan of my blood vessels and such in my head. The results of my MRA last week were the same as someone who has suffered a TIA or stroke. Quite scary that my hospital at home just turned off the alarm sounding for my blood pressure and heart rate, and passed it off as being a result of the pain. Turns out, the attacks were a result of me being hypertensive. That was a scary reality for me to swallow. 

  
Dr. Diamond took extra precautions for the next 12 days. I stayed attached to a 48hr EKG, received continuous fluids until my blood pressure was steady, immediately started the necessary medications and continued with PT and BioFeedBack. I had three more attacks following the first which gave us a chance to actually test different mixes of medication. We definitely learned more specifics about HM this trip, like my body’s lack of ability to metabolize medications correctly. Diamond is always a learning experience. 

  
I had to detox off of the medications I had been on since March. The medications that have been making me feel better than I have in years, were actually hurting me more than I knew. Even when I came home after a 14 day hospital stint, I didn’t ever catch back up to the pace I’ve gotten used to the last couple of months. My droopy face never completely left, and my headache has been taking over more and more. It’s been a frustrating step back after seeing so much progress this Spring. 
Saturday, we spent the day watching basketball at the lake. No matter the consequence, watching my dad coach will always be one of my favorite things. I gave my parents a heads up that I could feel my right side beginning to drag. I took a shot and all of my meds that night and the next morning. I still ended up starting the day with a crazy bad migraine and little sight out of my right eye. Sunday afternoon I took a second shot. An hour later my jaw locked and a full blown attack began. A third shot, this one Norflex, and a choked down muscle relaxer helped me to kick the reverse lock jaw pretty quickly. Unfortunately, two hours later my jaw became locked again and my attack was continuing to get worse. 

I was determined not to be back in a hospital today, after only being out of one for five days. I waited 30 long, excruciatingly painful, miserable hours before giving in to the suggestions of an ER trip. It took an hour and twenty minutes to even see a nurse…talk about FRUSTRATING. I ended up with a fairly good doctor, but the nurse messed up my medications a tad. I was able to leave with my jaw under control and a slightly better headache. Although my attack is still fighting me, I just couldn’t be more thankful to shut my mouth!!!😉
I’m so thankful for my sweet momma. She took time away from Summer School to come to Chicago for the last of my trip. She knows I’m much more comfortable with her there, and even though I can self advocate, I love when she is my sidekick. Again tonight, she waited out the awful emergency room with me and not a single complaint. Even though we didn’t get home until 2am, and she has to work in the morning, she was more than happy to be there with me. Thanks for freezing to death with me for six hours. I love you, Mom!!

  
This brings me to a total of 18 days of June spent in a hospital, and 50 days spent inpatient in Chicago since October. Those numbers devastate me. Especially after doing so well and looking so good for the last three months. My energy is continually depleting. And though I’m not as bad as I have been in the past, I’m so worn out having these attacks so frequently. Thankfully my weekly infusions still have my daily migraine doing so much better! This has just shown us the true awful randomness of Hemiplegic attacks. They don’t care about your plans, or your exhaustion or well being. I’m so thankful to have the summer to figure this out! Praying that my new med line up starts to do its job and that I can pick up my “Old Hadley” role again!

   
 

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My World Without Migraine

I came across this contest on the Hemiplegic Migraine foundation’s Facebook page. You’re challenged to create a unique 30 second video using the prompt, “My life without migraines”. I had to do it…I’m stuck in the hospital for a week, what else am I going to do?! I thought it was also the perfect blop post prompt, so I’m sharing it with you guys. This was my entry!
I know what my world would be like without Hemiplegic Migraines and New Daily Presistent Migraines. But does that make me lucky, or extra unlucky? Should I be thankful I got the expirences I did? Or frustrated because it’s so close I can taste it? I crave to have that freedom again. But I am thankful I have those memories to look back on. In my world without a migraine, I wouldn’t be scared, embarrassed or emotionally in shock. However, I wouldn’t be so strong, I wouldn’t be so thankful, and I wouldn’t cherish the smallest things. I would get to cheer again. I would get to rush for a sorority in the fall. I would get to go out with my friends. I would get to have a senior year, get to be 18. If I didn’t have this pesky migraine I wouldn’t be half way to my pharmacy degree(I wish!), I wouldn’t have expirenced the raw world, nor know how to handle all varities of people I have had to work with. But most importantly, in the world without a migraine, I wouldn’t have grown stronger relationships, grown truer in my faith, or become the great self-advocate I am today. I dream of a world without my right side being debilitated, without seizures, without excruciating pain. I pray for a world without Hemiplegic Migraine and all others. Unfortunately, my world has Hemiplegic Migraine and New Daily Presistent Migraine… So you can betcha I’m just gonna have to show it who’s boss!

Life Without A Migraine  <——— final video result!

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JUST ROLL WITH IT 

It’s hard, having to adjust and readjust and adjust again to all these unexpected curve balls in life. I’ve never been a fan of change. I love my traditions. Even when we moved, I hated that the stockings at Christmas couldn’t be in the same place or that 4th of July wasn’t spent around our pool. But more and more I’ve had to learn to just go with the flow. A saying I’ve picked up and now my family has too. 

  
I don’t think it’s something that you just get used to, having no control of the unwelcome timing of attacks, that is. In many ways, for the last few years I’ve tried to make up for my lack of control over my body in other ways. I had a picture in my head of how things should go and each time that picture was skewed, I couldn’t handle it. 
But it’s scary. Talking one minute and not being able to the next. Waking up in the morning, and not being able to see out of one eye. Not being able to feel your arm or leg. Physically unable to control or move your body. It’s scary. 
It’s also embarrassing. To fall in public, to wake up on the floor in Walmart, to disrupt another class, I almost used to hate getting up because it’s embarrassing. It’s not cute to have half of your face droop or to stutter or to drag your leg. It’s weird to have a thing obviously in your chest. It’s uncomfortable when your memory just decides to take a break. It’s obnoxious to sit away from a group or have to randomly make a run for the restroom because nausea won. It’s embarrassing. 
It’s the biggest emotional challenge I’ve ever faced, obviously. To have so many people not understand why you handle it the way you do, why you suddenly are around less and less, creates an uncomfortable situation for all involved. So many people judge off of misconceptions instead of trying to educate themselves. Most people run from it, because that’s what is easy. It’s easy to distance yourself from it, instead of accepting and trying to understand. It’s easy to get offended or put off when plans are continually cancelled or people change. I wish I could distance myself from it. I wish my family could distance themselves from it. I wish my best friends could distance themselves from it. It’s a gigantic emotional challenge. 
  
But guess what? THAT’S LIFE. Throwing pity parties everyday isn’t gonna getcha anywhere. So, we just roll with it! We make jokes about it. And we stay thankful for all the positives and little things in life. 
Kels, Zach and I joke about me always “having problems” since I’ve been the accident prone child since day one. I was the one that had to wear the ridiculous get up when we went sledding because of my cast, and the one that managed to scrape my face down the diving board trying to handstand off it. Now, I’m the one they sit with in the hospital, still laughing as the nurse pumps Benadryl in me. In the last three years, Zach has hardly missed any of my hospital stays, even in Chi Town. Kelsey always saves time for our ridiculous adventures, like getting a four wheeler stuck in brush. 
   

 

Ash is an incredibly good sport since I’m always changing our plans. She doesn’t even blink an eye when our food comes out at a restaurant and makes me randomly way too nauseous to eat. Or when my meds hit me and I ask her the same question multiple times, she just laughs and probably tries to mess with me and confuse me…not that I need help with that! So Ashley, should I wear a dress?
  
The Rents and I are ER pros. My dad finds vending machine snacks for us, the best game on, and gets comfortable. The two of us have the WORST luck with doctors, too many times have we ended up with a freak that was more worried about getting close to Dad than solving my issue. My dad isn’t the most subtle person when it comes to his reaction of Dr. Dreamcatcher playing constipation charades. My mom likes to keep me distracted and sometimes sings for me(I’m laughing while I type this). One time a nurse walked in while I was passed out and my mom said “Ohh, she’s just showing off again”, apparently the nurse did not like that and scolded my mom. Obviously she was kidding! I think Parker absolutely loves when my medicine makes me funny, mostly because I’ll laugh at all of his jokes😉 
  
So yeah, it’s rough some days. Yeah, I’d give anything in the world for a magic pill. But, what I wouldn’t trade, are the memories and togetherness this has brought me and my amazing support group. So hospitals are a regular part of our life? Floor parties are normal, so what? We’ve shared plenty of tears but so many laughs. HM doesn’t rule my world anymore. Ya just gotta learn to go with the flow!!😎