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Infusion Treatments😷💉💊💪🏼

According to aafp.org, of the 51% of chronic migraine sufferers that report serious disturbance in quality of life, 83% percent of those people are found to be treated best with intravenous medications. These numbers are backed up by the 62% of chronic migrainers who find substantial relief in long term infusion therapy.

My body has proven these numbers to be very true as I have always responded to IV medications, still having to be in high doses, whereas I have no reaction to oral medications. So, although the ER is full of triggers and is a temporary fix, we have found it to be the necessary step for my body. My parents and I spend our bonding time in the hospital more than anyone knows. During my Diamond hospital stays, never less than a week, I am on continuous IV therapy that my body depends on.

   Emergency Room visits and Chicago trips just aren’t a practical way to mange life. I already have to go to Chicago every 90 days. Between attacks, I’m typically extremely hypotensive but during an attack I shoot up into the hypertensive range. I am unable to maintain my own hydration, at all. Although I take the maximum dose of Magnesium daily, my levels have just continued to drop. So, in March, Dr. Diamond decided to start me on weekly infusion treatments as a preventive, meaning I would go each week even if I wasn’t feeling bad. I would be getting fluids for hydration and blood pressure maintenance, magnesium to supplement my levels, Phenergan to help my crazy nausea, a medication for my seizures, a med for pain(but no opioids for me!), and my lucky drug, Benadryl, in high doses for my migraine.

 My mom, Graham and I found ourselves in the infusion center, surrounded by sick, elderly people, ready for my first infusion treatment. I was given the choice between a recliner or bed room. I chose a bed room so I could nap. I had a quiet, private room, able to turn the lights down and shut the door. The two chairs in the room for my visitors were even kinda comfy! I started to relax as I jumped right into making myself at home, moving everything to how I like my hospital rooms. Graham is uncomfortable with how comfortable I am in the hospital setting. Poor guy.

 Lewis was my nurse that first day and he immediately made me feel better. He took the time to listen and really answer each question I had. But of course, he struggled with my crappy grandma veins. Lewis got me through my treatment keeping me as comfortable as possible, he must’ve done something right because I slept for four of the six hours! He still comes and checks on me when he sees that I’m in. Kelsey approves of him because he snuck both of us some chocolate ice cream last week, annnd tied Kelsey’s glove balloon😉

 (gotta keep her entertained somehow😉)

Although weekly hospital trips aren’t ideal or exciting, I’m thankful for the easy, smooth, helpful flow of the infusion center. But each week it was getting harder and harder to place a good IV. Multiple nurses would try, several veins were blown out, and NICU lines were making for a long(6 hour+) painful trip each week. When my veins weren’t healthy enough for a mid-line I finally went under the knife and got my portacath placed under my collar bone. This improvement cut my infusion times in half, made the reception of the drugs safest and made it basically pain free each treatment. Hallelujah!🙏🏼🙌🏼

    (NO more IVs!!!)

  (Being bionic woman is extra cool)

All the people willing to support me and go with me to keep me company during an infusion just makes me so so happy. At least it gives my parents some downtime? Ehh. Graham loves to come sit with me but is sure to watch the nurse like a hawk. He knows exactly how it should go, step by step, and is not afraid to speak up when something is skipped. That’s a lot of responsibility for a nine year old. Parker plays with every gadget in the room….twice. Including the nurses😉 My grandmas and aunts have taken their turn without complaints, too. Love them!

  (We didn’t leave until 5:30am 😳)         

Even more special, either Ashley or Kelsey is there almost every week. Ash loves to badger the nurses with questions, yet is still always mind blown by something new every time she comes. Kels and I take advantage of the perfect time for lunch dates and Pinterest pinning. Wellll, she actually just takes advantage of out of it Hadley.😂 Zach and I got stuck with a two hour extended infusion and cranky nurse. The treatment center closes at 5, I think we walked out at 7:30. Oopps. Zach may never volunteer again, I was just thankful for the good company and Mugs Up date!

        (Skype dates: the obvious Hospital must-have)

So, each week, for the last three months, I intial and sign the consent forms before the receptionist has time to explain it to me, then check in with Nurse Kayla for my room assignment. She always smiles and sends me to my “regular”, room 5, that is oddly comforting to me every time. Maybe next time I’ll share my Captain Crunch. Ha! Passing around “good mornings” with my nurses and joking about who called dibs on me this week, happily makes me feel like more than just the next patient. I think all of the infusion staff has stopped by for a high five or hug for winning the port battle😊 I’ve really gotten quite comfortable and have appreciated the honest communication and backing up the patient.

So, each week, indefinitely I will have my port sterilely accessed and get: my pushed medications quickly, my infused meds safely, and my fluids dripped over two hours. I’ll keep making the best of the trips by taking naps and enjoying the company I have for the week. The treatments are completely worth it, so I unplug(mostly) for the day and usually settle in with a good movie to watch, or I’m in a med coma state. I’ll keep walking out of the hospital feeling like a totally different person from when I walked in, and that’s the best feeling.

 (She’s actually de-porting me for the week)         

Unfortunately my Hemiplegic Migraine attacks have begun to land me in the ER more and more frequently. In fact we got home from the emergency department at 5:30 the other morning and had to be back in the hospital for my infusion at 10 AM. Don’t worry, I’m easily Boone Hospital’s # 1 patient. So, I’m very thankful that these weekly infusion treatments have made a distinct change in my chronic migraine, canceling out the ER trips for those as well. I have been pleasantly surprised with the mostly, smooth communication between my Chicago doctor and Columbia doctor. That’s way too rare. I could write a never ending book about the frustrations us frequent flyers run into within the hospital system, or I could just become president and change the medical world, right?! Yeah, noo thank you. At the end of the week, these inconvenient infusions are 100% worth it to help keep my body rollin. In fact, on an average week, a day or two before my treatment I begin to drag. Basically, I just need a swift kick in the rear once a week💁🏼 I also couldn’t be happier with my port, best decision I have pushed for. Although drugs may be hard on your body, they are sometimes necessary. If you think IV therapy could be a game changer for you too, look into it! Work with your doctor to come up with the best cocktail for your health, it’s all about trial and error. Listen to your bodies!!!

   (Standing port proud)

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Broken Crayons Still Color 

My first trip to my Chicago hospital in October was a rough transition for me at first. They promised they didn’t cheap out on the detergent, but I told them they made up for that in the toilet paper department! Lol. Luckily, one of the most special parts about my Diamond family is just that, they make you feel like a family you fit into perfectly. 

I started attending all the classes I could make it to when I wasn’t in a med coma. My blood pressure dropped too low in Chair Yoga class and I passed out…didn’t go back to that one. I had a seizure in BioFeedback which resulted in the rapid response team wanting to shock me with the paddles… I avoid that now. I went to “Anger with Migraines” class. As everyone went around the circle introducing their struggles, I realized I was in a class for bipolar/depression/anger management patients. Oops. What was I supposed to say at my turn? Hey, I’m Hadley and I’m actually not angry? *foot in mouth* 🙆🏼

  
Kate, the occupational therapist, leads all of the other activities that keep us busy in The Point Room. She plans movie night, lunch dates, some of us even get to walk down the block to Platos Closet with her for “retail therapy”. Too bad my neon yellow wristband that says FALL RISK keeps me from shopping. I know some patients love being able to get out and do something normal. But my favorite groups that Kate leads are the Art Therapy sessions! 

Art hasn’t ever been something that interests me. I feel like creativity and patience are two things I lack and OCD is something I have…making a bad concoction for being good at art. Kate started bugging me about getting into it as she would drop markers and coloring pages off in my room. I enjoyed using all of my free time to color. 

   
 I decided to start going to the Art Therapy classes and I loved it. I’ve painted bird houses, drawn, done holiday crafts, made jewelry…Kate always has something new for us to try! When I was there in June, Nurse Vicki and I spent forever beading bracelets and ear rings for the other nurses or peds patients. It was so fun! (Even in the hospital)

  
The last session I was at a fellow patient said “broken crayons still color”, then described how we could all relate to that quote. All of us in the group were “broken”, yet we were all finding a way to keep going. I loved that. I’ve kept up with my art therapy at home and I am absolutely LOVING it. My grandma and I have kind of taken it on as “our thing”. It’s been fun to pick different styles and materials to try out together. I’ve decided I like painting canvases the most, so I’ve started doing that even on my own. I’ve gotten pretty comfortable using oil and acrylic paints. Something about getting into a new painting is just really calming for me. When my vision is bad or my eyes hurt painting is something that I can actually focus on that also distracts me. 
  
I’m not claiming to be the most talented at all…I mess up all the time! But that’s the beauty of it for me, I can just change the story of the painting. Everyone has their own natural, therapeutic therapies that work for them and I’m excited that painting has been able to be such a positive, enjoyable hobby for me! “Art washes away from the soul the dust of everyday life.” ~ Pablo Picasso

   
 

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Not the Silver Linings 

This is a post that I’ve gone back and forth deciding whether I should share it, and a post that I’ve written and rewritten a million times because I feel like it has to come out just right to not sound like whining. 

Tonight, I had a long conversation with someone else newly diagnosed with Hemiplegic Migraine. We touched on a side of a subject I usually avoid, instead responding with silly positive clichés. And that is; what I have and will miss out on. I usually blab about the silver linings, which is typically how I choose to look at it. But I often think about the raw truth.

  
I got my license the day after my 16th birthday, in August. After October 26th that year, I was done driving until I could go 6 months seizure free. At first, that didn’t bother me because driving actually stressed me out. Once all my friends started to get their licenses and cars and drive themselves around I began to wish I could drive. I would just say I was glad I didn’t have to pay for gas! But it wasn’t until recently that I’ve hated to always use someone for a ride. Three years later, and I still haven’t made it that 6 months free. I know it bothers me because I see my little brother driving and my little brother having to be my ride. I’m not sure if I’m jealous of Parker’s ability or experience. I’ve been just shopping around for cars I wish so badly I was scraping together money for. I’ve been craving the Independence a license gives you. 

  
I’m so so genuinely stoked for all of my friends and each of their different college plans. UCM, Mizzou, S&T, Columbia College, SLU; they all scored some serious talent and dedication. I can’t wait to hear about Hailey’s softball and I know Kelsey will have a million clubs to keep up with. But I am a little bummed to be missing that side of the college experience. I’ve planned to live on campus and rush for years. I guess plans change, because I’m not perfectly coordinating my dorm and going on coffee dates with my new roomie. I’ve desired sorority life probably forever, but I can always do it next year. I’m most sad that Kelsey will be two hours away while I’m stuck at home.

  
I always joke that I stay locked away in my house, which has changed recently but was true for quite some time. It was hard for me to realize how uncomfortable I made people, when I felt like I was the only person who should get to feel uncomfortable. Something being wrong with someone you care about is hard to adjust to, and though I couldn’t see it at the time, I now see in how many ways that can affect a loved one. I’ve never been one to be uncomfortable in my own skin until I had to worry about who I would seize in front of or not be able to function around. But I’ve never been so embarrassed as I was when, while I was cheering, someone yelled over the crowd that I was a fainting goat and asked if I would fall when they snapped at me. That still makes me sick to my stomach. During this process relationships have been the hardest “normal” to maintain.

But the thing I still struggle with most of all are the countless lost high school memories and most of all cheer. My parents always teach us a lesson using a time from their rebel days, and share their best memories from their glory days. I worry what stories I’ll have to tell my kids someday, or lack thereof. But to top the list I had the hardest time having to walk away from cheer. I was a good cheerleader. And no matter if it’s a sport or frilly and girly, stunting is hard work. All I ever looked forward to was stunting with Kayley and Libby. When I could no longer practice I felt like an awkward bystander just off to the side, I fell out of the always hilarious inside jokes, and felt too easily replaced in the stunt group I loved so much. If I had known October 25th, the last football game of the year, was going to be my last full game ever, I would’ve been a little sharper, thrown another basket, killed the fight song dance, and stunted with Kayley til our arms fell off. I would’ve cheered a little louder. I miss nights in Maddie’s hot tub and giving fart noise makers as birthday presents. At the end of the day I still scored best friends, basically a twin, and better Tan-Tar-A memories than anyone else. Always wear swim suits when body painting😉

   
   ps- DR on a road sign means drive not doctor…that confuses the pizza guy.