Posted in #teamhadley, Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Dystonia, Health Blog, Hemiplegic Migraine, Hemiplegic Migraine Research Study, HM, Just Keep Keepin On, MU Health Care, port, Seizures, SHM, Sporadic Hemiplegic Migraine, Today I Win, Uncategorized, University of Missouri Health Care, writer's block

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!

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Posted in Uncategorized

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)