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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 Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Just Keep Keepin On, Seizures, Today I Win, Uncategorized

Abnormal Psychology

I opened my Psychology textbook a couple weeks ago to read about Biopsychology, Neuroscience and Human Nature. I had to write a paper for my abnormal psych class about sympathetic division and parasympathetic division, basically our bodies’ fight-or-flight responses. However, instead of taking an hour to read that specific section and write my paper, I spent my time reading the entire chapter. The intro paragraph to the chapter gave me chills as I scanned over it. You could’ve been fooled into thinking the textbook wrote about the first day I had an attack, using nearly exact depictions I have used before.

The textbook wrote; “Then, on a cold December morning, Dr. Jill Bolte Taylor’s life abruptly changed. When Jill first awoke that fateful day, she noticed a painful pounding in her head that felt like a severe headache. As she tried to go about her normal morning routine, however, she began to notice odd changes in her body and mind. Stepping into the shower became a focused effort in coordination. Her body felt strange; the sound of water was a deafening roar, and the overhead light seared her eyes. Jill could hear her family’s voices, each syllable like a pen drop, but was not able to respond no matter how hard she tried. As she tried to think rationally and figure out what was happening, she couldn’t keep her thoughts on track and felt two steps behind. …”

I wrote in a past blog; “October 26th, 2012, I was a sophomore in high school. I woke up that Friday morning in a weird daze, like I was two steps behind everyone else. Headaches were not a new thing for me, but that day it was a headache like never before. I was not myself. I chalked it up to cheering in the rain and not eating well the night before. I figured my asthma was acting up and I was on the verge of being sick, nothing a weekend of rest couldn’t kick. In second hour, Señora Johnson asked me my favorite sport to play. I was to respond, in Spanish. But I couldn’t. I remember the feeling like it was yesterday. You know in cartoons when someone’s talking but the person listening feels like it’s far away or out of focus? That’s exactly how I felt. It was like I could hear each letter of what she was saying but I physically could not respond. She gave me an awkward, like, two minutes to respond. About a minute after I couldn’t come up with a response, and a friend jumped in to save me, I passed out for the first time…”

Dr Jill, had a stroke that day. She was taken to the hospital, tested, scanned, diagnosed and treated. She still spent 3-4 months returning to her normal self, but says she can remember the feeling of that morning like it was yesterday. I too remember the moment like it was yesterday except, I was not tested or scanned(at first), I was shown how constipation was the answer, instead. I can’t help but wonder what changed that day. Or what could’ve been different over the next few years if I had had tests run that first ER trip. It’s scary how much could potentially slide through the cracks based on one doctor’s opinion. What if I’d been having a real stroke? That’s where my essay prompt about doctors having a God complex came in. Yeah, I had fun with that one.

Learning about the brain works and all things psychology is my favorite. If I could be a real life Criminal Minds team member, I would do it in heart beat. But it is kinda weird having discussions about things that hit close to home. After having discussions, reading the above, and writing two essays; one about doctor’s God complex and the other about the sympathetic nervous system I was loving my psychology class. Then, last week, I had an appointment with a pain management doctor. He talked with my mom and I for probably an hour before we began discussing possible ways he could help. I really liked the doctor and appreciated that he was aware how serious and complex my case was. Dr. M presented the idea of a nerve block. But he happened to start explaining the works of the sympathetic nervous system! It was so cool to be able to have knowledge of what he was discussing and all the things this system does for our bodies. 

STB

The next day, Dr. M set me up for a Stellate Ganglion Nerve Block. The procedure is performed by putting a needle right into your neck. Lovely, right? Actually, it wasn’t as bad as I thought. I had made myself nice and anxious about it, until I realized the picture I had come up with in my head was of an actual meat thermometer being jabbed into my carotid. Probably another nod to Criminal Minds, there. The hope of the SG block is that it helps my jaw and the major right-sided swelling that this doctor found. Unfortunately, we know it won’t help the root of the problem, HM directly, but maybe these few pieces of it. Any-who, with zero local anesthetic, the doc went for it. I knew he was successfully in the middle of my nerve when I got instant make-you-sick-pain. All in all the whole procedure was pretty short and sweet. The nurses were fantastic, but underestimated my experience as they were sure to explain that a X-Ray would not hurt, and just took pictures. When the X-Ray picture popped up on the screen, two nurses started whispering, worried about something in my vein. It was actually just my Port-a-cath line that you could see plain as day, which I thought was awesome! We have yet to see ground breaking results but are hopeful that with a few more blocks we will soon. I go back in this Friday!

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Here just shows the site in relation to my port. Site of block is just bruising, slightly.