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.

 

 

 

Advertisements
Posted in #teamhadley, Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Dystonia, family, Health Blog, Hemiplegic Migraine, HM, Just Keep Keepin On, MU Health Care, PCU, port, portacath, Seizures, SHM, Sporadic Hemiplegic Migraine, support, thankful, Today I Win, Uncategorized, University ER, University of Missouri Health Care

365

Friends! Again, it has been a few months too long without a blog published. Sorry!

April 28, 2017 has marked the date of a new anniversary. In the last almost five years October 26, 2012 has been the biggest anniversary on my calendar. That date being the day my life literally changed. Who knew one single day could change my entire future? I don’t know how or why, but that’s exactly what happened. For five years that October day has rolled around, leaving me unsure if it should be celebrated as another year survived, or defeated that it was just another year fighting my body so hard. But this time, there is no question that April 28th should be celebrated!

One year ago, I went through living Hell in the emergency room(shocker), and was admitted to the neurology floor of the hospital. At the time, we were frustrated that we would have to spend likely a few days admitted, stuck in the slow moving world within the hospital. Through a few nights with no sleep, and equally as many days without being able to eat, I couldn’t help but feel defeated as my new doctor chose to run some tests before working to stop my attack and fix my locked open jaw. Being given a feeding tube wasn’t something I ever considered needing, and it intimated me, the hospital pro.  So many tests were lined up for me that I would get back to my room just to be taken for the next in line. I was very thankful for my portacath as nurses drew enough blood that I questioned if I was going to run out. Physically, I felt like I was at my lowest point, and it seemed that mentally I was close as well. I would soon be proven wrong.

IMG_1296

Through the hard work of my doctor, the determination for answers, and prayers, lots of prayers, we could see a light at the end of the tunnel. I had been working with Dr. Cheesy for one week. He had seen me one time. He walked in on the third day with answers…and yes, that is plural. As he told us that my jaw was dislocated I immediately felt a bit of weight lift off of my shoulders. For almost a year, and nearly weekly, no doctor had taken the time to x-ray or look past the surface of my jaw being forcefully locked open or my face swelling for hours and even days. My parents and I shared with the doc that we had been told I was self-harming, my parents told to stop taking me to get medicine and all would be well, and best of all; that the muscles on one side of my face were simply fatter than the other. He chuckled, and admitted some doctors suck. Immediate tears welled in our eyes as The Cheese sat down explaining something called Dystonia. I’d read about a few dystonia cases but didn’t know any details. He told us that Dystonia is a disease of the muscles. It can be a whole disease in itself but is more often a part of a bigger picture. A disease of the muscles easily makes sense being a factor related to Hemiplegic Migraines. I was officially diagnosed with dystonia of the jaw, which causes the muscles in my face and jaw to spasm and pull so hard my jaw gets dislocated. It made us sick to our stomachs that the reason my jaw was locked open so often for a year was because the high doses of medicines were simply getting my jaw to slide partially back into place, never actually relocating it. All it would’ve taken was one x-ray to show the truth. Instead, my jaw joint had gotten destroyed a little more each week. ONE x-ray.

I spent the next 22 days moving between the neurology/surgical ICU and the Progressive Care Unit. The PCU is the step-down unit to ICU. Within 14 of those days my jaw was reset three times. For 15 days I relied 100% on a feeding tube. The general rule after getting your jaw reset is that it will take three months for it to heal, three months before you can eat most foods again. My family was so excited when they could start feeding me limited foods through a syringe. We celebrated that. Near the end of my stay a therapist had to come teach me how I was going to eat. I was 19 and learning how to eat again. I was so embarrassed that I was going to have to eat baby food. I was angry that if I wanted a burger or pizza, really anything good, it would first have to be blended. I never wanted one of those bad enough to eat a junk food smoothie. Instead I lived off of mostly Smoothie King and baked potatoes. 😉

IMG_1222

Between jaw issues I was also being aggressively treated for the Dystonia and Hemiplegic Migraines. My doctor was attacking my attacks more within a few weeks of working with him than anyone in the last four years. Because of that I was poked, prodded, tested and medicated constantly. I remember very little of those 22 days and went through days just being out cold. This is when I truly hit mental and physical rock bottom. I could do nothing on my own for myself. Family and friends visited on their lunch breaks or evenings just to take me on walks around the floor because I couldn’t do it on my own. One night after trying so hard to get me to wake up and get with it, my nurse asked my birthday and I couldn’t remember. He asked who was sitting on my bed. I couldn’t tell him it was my dad. Being the biggest daddy’s girl that I am, I couldn’t tell that it was my dad sitting on my bed squeezing my hand. (crying now) I have a foggy memory of that, but it feels like I was an outsider in the room watching it play out, not that it was actually me.

Thinking about all of these cloudy memories brings back the many emotions from those days, feeling just as raw as they did a year ago. However, it makes me almost as emotional reflecting on the past 12 months. As last summer came around life continued, but I was skeptical that there would be any change. By September of this year I had had a total of three seizures, and only been in the hospital two times since May. One of the two ER runs being for kidney stones, I actually appreciated going in for something “normal”. After September I wasn’t admitted to the hospital again until January, spending five more days in ICU, and then in March for only three days. I’m still shocked that I’ve had only four hospital trips in a year, compared to last year when I was making trips nearly weekly.

IMG_1674
I have kidney stones and infection in this picture.

I haven’t published a blog in awhile partially because life has been a different kind of boring. Who knew boring would be a good thing?  I take advantage of my Mondays spent in the infusion center racking up hours of sleep that I’ll miss later in the week, while the medicine necessary for me having a good week is delivered through my port. On top of that I still rely on medications daily and have my fair share of intramuscular shots to take. I continue to try new tricks and treatments of all kinds. Attacking my body with so much medicine isn’t something we’ve ever been huge fans of, but after nearly five years of trying everything, any therapy that ignites change is worth it. And change we have seen. Everything has changed.

Through this whole crazy ride, one lesson I’ve learned is to seriously appreciate and celebrate the little things in life. I know, so cliche. When my brother was a sophomore in high school I was only able to attend two of his basketball games throughout the entire season. This year was his senior season and I only missed two games of the whole season. Thank goodness for ear plugs and special migraine glasses! To make that small win a little sweeter, my dad is also the high school basketball coach. Killing two birds with one stone, I was finally the one traveling always to support them.

IMG_2262.JPG

I’m still a little bummed that my doctor insists I not take more than a couple credit hours in school, but I’m trying to accept that it doesn’t matter how long it takes to graduate. Eventually I will be a college graduate with a diploma that represents the fight I won to get there. It’s refreshing to think about my future with dreams different than hopes to have enough energy to make it through the week.

I’ve talked before about missing my old self and working so hard to earn that self back. Though many things are different, more and more of that Hadley I missed so much is coming back. I’m back to babysitting on the regular, something I have always loved to do. I have a real job!!! Being able to work a few hours a week is so satisfying. I don’t have to cancel nearly as many plans last second and have greatly appreciated going out with friends, or simply being able to handle life outside of my four walls. A lot can change in 365 days.

I’m proud of myself.  I’m happy.  I’m winning.  I’m thankful for our great God above. He always has a plan.

 

p.s. If you’re wondering about the best baked potatoes, I’m your girl. 😉

p.p.s Adding a link to my “special migraine glasses”👇🏼

https://www.theraspecs.com/?utm_source=bing&utm_medium=cpc&utm_campaign=**LP%20-%20TM-%20General-%20HV&utm_term=TheraSpecs&utm_content=TheraSpecs

Posted in #teamhadley, Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, family, Health Blog, Hemiplegic Migraine, HM, Just Keep Keepin On, MU Health Care, PCU, PICC line, port, port surgery, portacath, Seizures, SHM, Sporadic Hemiplegic Migraine, support, Today I Win, Uncategorized, University ER, University of Missouri Health Care

Winning.

One year ago today I published a blog titled, “Today, I Win”. Never would I have remembered this date, but Timehop gently reminded me today. I captioned my shared post with one simple sentence, “This is a special one”. Little did I know at the time just how special this post would end up being

As I clicked the post to reread my thoughts I got slight butterflies. Sure, I remember the day, I can tell the story, but I didn’t expect for each word to impact me so deeply. Reading about driving for the first time in years, I could taste the exact newfound independence from that day before I finished my description of it. That feeling has yet to be duplicated since that day, and never again will I feel that exact thing. It’s the day I chose I was going to win. 

screen-shot-2016-10-03-at-10-51-09-pm

Never in a million years would I have been able to guess just how empowering this statement has become. It’s hard to fathom how much power can be held within three little words. No matter the battle you may be fighting, you’ll need bravery, strength, drive, family and so much more. You won’t make it through any battle without being humble or proud of yourself. Life requires you to have confidence in yourself, but you’ll learn how important a good cry can be. This saying, “Today, I Win”, encompasses each of those traits, but the list doesn’t stop there.

I won’t sit here and say that those are the first and last words I say to myself every day. However, every day I remind myself of it at least once because when times are tough, they are very tough. It’s on those bad days I have to remember how good it feels to always win. When I spent nine months having to drag myself, and family, into the emergency room every week I questioned how I was winning. If I wasn’t living, if I was barely scraping by, could that really be counted as “winning? It didn’t feel like it. But I was. In my hours spent sitting in that waiting room I watched hearts break, emergency helicopters land, and people leaving empty. Even though I was there every week, I also left every week. And I left feeling better than when I came in, which is more than some others can say.

The beginning of this past April, my mom and I found our way to yet another new neurologist. We had been waiting for this date, this appointment and this doctor for close to fourteen months. None of those three things were anything new to us, nor was the anxious knot in our stomach and prayer for help. As he walked through the door we knew Dr. Cheesy was quirky and unique. Some of his very first words were this; “I’ve learned you can’t just look at one thing. That doesn’t work. Specialists will bounce people around and then they’ll end up with me. I’m usually the last in line, so I can’t just pass you on to anyone else.” As The Cheese spent the next hour asking questions, examining and thinking, my mom and I both knew we had just won a big one.

In April and May, just a few months ago, the Today, I Win mindset wasn’t any easy one for any of my family or friends to keep. As I was hooked up in ICU getting a feeding tube, there didn’t seem to be any spot worse. As I laid mostly unconscious for days upon days, the amount of fight, bravery or resources didn’t seem to matter. Through the many tears cried and the confidence in my doctors, there still didn’t seem to be a light at the end of the tunnel. To my family and loved ones it didn’t feel like Hadley was in there. I couldn’t remember my birthday or walk without help. There were some very scary days. After 22 days, I walked out of that hospital with more answers and plans in place. Yet again, I had won. We had won.

Today, I Win has turned into something much greater than myself. It has turned into a mindset and support from so many others. I hope others use this motto to help them through. That’s the beauty of this mindset, it can be made to fit all battles, because we all have them.

Now, today. Today I woke up. It hasn’t been a great day for me, I’ve been struggling, but we’re trying to be proactive in stopping what we know is coming. Today, I drove to the doctor. Today, I met with Dr. Cheesy just as I do every single Monday. We discussed my week, we discussed the current plan and anything else needing to be covered. Today, I had dinner with my family. Today, I am sitting down and posting my first real blog in 3 months. As I write this, I touch the charm on my neck that reads”TIW”, just as a reminder that I am lucky to have so many people fighting to win this with me.

Today, I Win.

Today, We Win.

 

Posted in Uncategorized

Something’s Gotta Give.

As everyone has gotten back into the swing of schedules and school life, I’ve picked up quality time with my sweet pup and online classes. All of my friends are officially moved away from htown and into their new “homes”. I’ve scrolled through everyone’s dorm pictures, good bye and thank you posts, and college life snap stories glad to see my friends each loving the path they chose. I’ll admit, it’s been a bit harder for me than I thought it would be. Watching all of them thrive having the time of their life makes me happy for them. But, that’s the problem, I’m just watching.

“But you look so good!” Thank you, but also know I don’t spam social media on my worst days.

Though I’ve never been at peace with the necessary decision to stick back at home and take online classes, I’d finally convinced myself it would be okay and I could attend Mizzou or Columbia College my sophomore year. Now, that seems more out of reach than ever. How am I supposed to obtain such a high energy, hands-on job like I would like in the medical field if I can’t even make it through the most low maintenance weeks at home?

This summer has been the hardest yet, which weighs heavy on me after the incredible Spring I had. I guess in some ways the day by day struggles I’ve fought with all summer are proving to all those people who sympathetically tell me they’re bummed I still had a bad summer that no, this wasn’t all going to go away after I graduated from the stress of high school. I wish the stress of high school was my only issue. I think it’s also been extra disappointing lately because, for the longest time, the doctors were all positive I was going to have grown out of this by now. Instead, I’m getting worse. The scary truth that HM is a progressive disease to be dealt with for the rest of my life has been proven these past few months. I feel like every morning I’m waking up with a new symptom.

It’s gotten to the point that I often have to plan my week around the days I’ll be best thanks to my infusions. Some of the scary symptoms I’ve seen discussed in my support group that I thanked God I didn’t have, have hit me like a pile of rocks since June. And I spent 14 days in the hospital in June, soo that’s saying something.

I had gotten used to seizing throughout the day and not feeling well. I knew there would be days a bad attack would hit and my body would drag. When my right eye began to droop it was a visual reminder and warning to get ready for the rough few days to follow. But as I was adjusting and still making it along, I was reading scary stories and recollections from others on the HM Support Group I am so active in. I sometimes physically wince when I read the description of paralysis and complete loss of speech. Unfortunately, some of the things I once gawked at, thinking there was no way I could possibly get that bad…it’s that bad.

About once a week has been the average timing of the wonderful new symptom lockjaw. Talk about painful. I guess mine is technically reverse-like lockjaw because my mouth gets stuck open. That means no drinking, no eating, no oral meds until I can get it to shut. And that requires IV meds in the hospital…shocker. All of a sudden my face has decided to start swelling up during attacks, yet again a new symptom. When a new symptom comes along I always ask the Hemiplegic community, and every time they back me up. 11 people replied to my post about facial swelling, saying the same happens to them during attacks. Wonderful. From about 6-12 hours before symptoms become recognizable, I now cannot use the restroom. TMI, I know. They say my bladder and\or right kidney are probably getting paralyzed along with the rest of my right side. Sounds logical to me. We’ve all gotten a little discouraged the past month or two, but when my mom and I went back to read through some of our original HM research findings it was just another definite confirmation that somehow Hemiplegic Migraines are the root of all of this. How? How is all of this even possible?

A few nights ago I found myself tearing up and getting that uncomfortable feeling in my stomach as two new member of our Hemiplegic support group described their attacks. It always makes me nervous for a newly diagnosed HMer, but sadly it makes me feel a tad better for the ones that have been dealing with it for so long that they have some idea how to handle it, the definite diagnosis is just what they were needing. The two stories I read Wednesday night just made me feel even more bummed out, like when is this disease going to get figured out? I’m not sure lucky is the correct word, but the two gals had been through only one episode each. Their experiences were similar, as they usually are to how we all started, each was rushed to the hospital and treated for stroke. Then the doctors shockingly ruled out stroke. That was their biggest shock, I think some of us reading and commenting were even more shocked that an ER DOCTOR realized, recognized, and diagnosed these ladies. I could hear the pain, confusion, helplessness and shock through their words. I wished I could just take on more of the disease instead of having to watch another person battle this. The most we can offer them is knowledge and virtual shoulders to cry on. Ugh. Ugh. Ugh.

I hurt. Bad. Majority of the time, again. My body  physically does not have the time to bounce back before the next attack comes on with the vengeance. It’s gotten so hard trying to determine how much medicine being pumped into me is too much, and how much is just what I need to make it. September 8th cannot get here fast enough. I see doctor Diamond, at the Diamond Headache Clinic, that day and get my third round of Botox. The third consecutive Botox treatment is when you’re supposed to start seeing results, so keep your fingers crossed people!!! I’m fully prepared for a hospital stay and kind of hoping I am there for a few days, in hopes that the Diamond crew can witness another HM attack. My attacks have progressed so much even since I was there in June. They’re more severe, more frequent, and lasting longer these days. My energy is back to being completely non-exsistent. I really just do not feel good most days.

All of that being said we have made some good strides recently! My home neurologist has finally come around to helping and wanting to be hands on. He’s already started to help taper me off of some of my current medications so that the transition won’t be so rough on me when I get to Chicago. I’m sure that hasn’t helped me feeling lousy. He actually came and saw me during an infusion last week. WOW! He scheduled some tests for the very next day, just to be sure there wasn’t something new going on that is making all of this worse. Following up on those, this week he added a CT scan. The nurse who helped put my port in came to access it and see how it was looking, she’s a pretty sweet older lady. 🙂 When they inject the CT contrast dye into your line they always warn you that it’s going to feel like you peed your pants, wellll that never fails! It’s so weird that even though you know it’s the dye, it feels SOO much like you wet your pants, you still feel like you need to check and make sure. …at least I hope I’m not the only one that happens to! The contrast dye always makes me really sick though. Immediately an even more powerful headache hit me, which was a bummer since my infusion the previous day had me feeling good. The rest of the day I could hardly stay awake. When I did wake up it was because that darn dye was making me sick. Blah. Thankfully, results only showed cysts.

I’ve also been doing some serious research on treatment ideas to present to both neurologist teams. Nerve blocks help several kinds of migraine, after asking around the HM community it seems about 50/50 on the success rate for Hemiplegic Migraines. But hey, if there is any chance I’m willing. I’ve done the most research towards the idea of Lidocaine Infusions. It’s a treatment kind of new to the migraine world, but the first site I read mentioned it helping HM specifically. There’s some potential side effects, but that comes with any treatment I’m going to try. At least it isn’t an opioid! I have a few other things on my list to throw at Dr. Diamond and Dr. K(my home neuro), one of them has to be worth a try! I’m just hoping Dr. Diamond has an open mind, at least to a conversation about my ideas, because she typically runs quite old school. Especially in her medication plans. I’ve been wishing we lived in the UK lately because they have started a experimental few trials and different, new, ways of treatment. People seem to be having some success with them because several articles have been posted about them lately.

I’ve been working more with my Chiropractor because she does help my jaw feel better. Last week, my jaw was spasming and beginning to lock when I saw her. She popped and moved everything. My favorite thing in the world is when she puts pressure around my head and neck, she always hits the EXACT spot. Best. Feeling. Ever. I have loved Dr.C since the very first day she started working with me. She just cares so much. Dr. C is also the founder of the local charity foundation, Pascales Pals. She has presented me with the opportunity to ask for something that I need or want. “Something that makes you happy,” she told me with a hug. After much research, I have decided to start the process of getting a Migraine Medical Alert Dog, with their help. I have found the company I would like to work with, and decided to send in an application to see if they would even qualify me for a dog. They got back to me in less than a week, and have given me the next application of the process… with that they can start looking for the perfect dog for me! Just a brief description of some of the things they can do include; retrieving and open medicine bottles for you, bracing you when you have a seizure or become paralyzed, and most importantly, can sense an attack 5-60 minuted before one begins. Yes, that’s a huge time window, but if I can take medications when an attack is brewing instead of waiting for when the symptoms begin, I could potentially abort several attacks. An alert dog could really give me that independence I’m craving. We’ll see!

http://www.pascalespals.org
http://www.pascalespals.org

Even though it has been a really rough summer, I still sometimes feel better between attacks than I used to. Getting infusions weekly help me, even if that means more medications in my body. Sometimes that is just necessary. Infusions have been running quite smoothly lately which just takes my stress level down. I better not have just jinxed myself… I just have to make it through the week and then I’ll be back in Chi Town. My dad is coming with this time! Praying for a smooth, uneventful, productive trip. Also begging for no more progression for awhile and some serious relief!

A perfectly descriptive image drawn by fellow HMer - Tammy Greer
A perfectly descriptive image drawn by fellow HMer – Tammy Greer
Posted in Uncategorized

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.