Each year, the last day of February represents the only day of the year rare diseases are recognized. With nearly 20 million Americans living with a rare disease, you probably know someone fighting one of these battles, yet their day won’t get half the recognition that national Margarita Day or Pet Day gets. Each of us unfortunate enough to know the importance of this day would much rather celebrate Kiss and Make-Up Day, August 25th, or National Chocolate Covered Anything Day, December 16th. It’s still awkward for me to claim importance to a title with the words “Rare” and “Disease”, but it’s important so I’m going for it.
That being said, of the close to 7,000 rare diseases listed, I could have it so much worse. My life isn’t on the line and just glancing at me, most days, you can’t tell I’m sick. The invisible part of this illness is both a blessing and a curse. I’m still trying to find a way to bring positive attention, conversation and knowledge to the topic without it having to bring so much sick spotlight attention back on me, does that make any sense? Lol. Being sick has affected me in every way possible. I can find both positives and negatives, it’s proven to be productive and counterproductive all at once, while simultaneously dragging me down the roughest years of my life that I’ve somehow also turned into the years I learned most about myself. It’s most definitely a unique experience, but I don’t think I could go as far as to say that I wouldn’t trade it for the world.
So, as I was brainstorming ideas for how to recognize February 29th this year, I googled Rare Disease Awareness Day 2016. The theme, if you will, just so happens to be about including all the people a disease affects, not just the person who is sick. Perfect! I immediately had an idea for a video and started scouting people out for help. I came up with five questions and asked some of my people to awkwardly let me record them answering them. Since they all rock, I got both my brothers, my mom, two best friends, and a family friend all talked into participating in the video. Score! I told everyone to be as un-rehearsed as possible and I was really looking forward to hearing all the different interpretations of each question.
They haven’t seen it yet, so ready or not, go watch!
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.
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!
This week I decided to try something totally different! I recorded details of my week to show to my specialist I get to see very soon. My mom suggested I turn it into a blog post. My aunt, who also suffers a chronic, invisible disease, agreed that sometimes you have to see it to believe it. I tried taking a video clip from each day this week, without making it an hour long but still getting an idea of things. It’s still quite long, but I wanted to get the point across, so please hang in there! I hope this gives everyone a more accurate depiction of the way attacks come about and the serious toll they take on my body, I wish I could’ve included more. Every time I compare pictures from bad day to post IV, I myself am still blown away. Not all the pictures are pretty and though I only added two clips on my worst days, they’re plenty bad. I wish I would’ve gotten a bit more of the final two days recored, but they were the worst two for a reason.
Each attack differs a bit, sometimes vomiting affecting me more while other times the seizures and so on. This attack’s worst part was the pain. Yes, it’s always painful, but it got extra bad this week. I’m so thankful my ER has been working well with me recently, but I am more than ready to visit my doctor and work out some new options. The first picture below was taken in the ER while waiting on a round of medications, the second was taken right when I got home from the ER.
(yes, this is one of those annoying videos you have to turn the volume up and down on.)
On a final note, since I’m letting the video do must of the talking this time, I want to say THANK YOU to all the people who have shown interested and ordered the shirts I have shared. I have been so excited and surprised by the amount of people ordering to support me. You all rock!
Sitting down to pump out a blog I will actually publish feels good after taking a three week break. I appreciate everybody asking if they’ve missed my latest one or wondering where I’ve been. It’s been a rough go lately and I decided to take a bit of a break from posting. Over the last three weeks I’ve written several pieces, but after reading over them they felt like negative whiny run-ons. I also just simply wasn’t motivated to share all of the bad stuff swirling around in Hadley world. Blogging is something I’ve come to love, but sometimes it’s still a bit hard to share such personal things. Sharing descriptions of such unattractive insecurities just wasn’t something I could bring myself to do while I was in a negative spot week. BUT! I’ve taken my time, and I’m glad to be back on the horse. Don’t worry, this doesn’t take away from the honest, raw feelings put out here.
While putting everything out there is necessary if I want to blog about my health, it can also be tough to find the line of sharing what needs to be shared, what details I want to share, and what’s right to keep private. Putting descriptions about paralysis, lockjaw, seizures and hospitals is simply unattractive. I’m not saying I need everyone telling me I’m super hot or anything surface level, really. But to have such detailed depictions of incidents that intimidate and turn me off, means that many more of the details I share probably do that much more to many more people. I’m not sure when infusion appointments became what I looked forward to, or when I started celebrating the taste of saline. At some point I became an expert in medical phrases and able to rattle off lists and purposes of medications. I’m 19 years old, but the shots I celebrate consist of needles and Benadryl. Those just aren’t things that my peers can relate to. It’s been tough for me lately, to worry that everyone I talk to will only be able to see me as HM Hadley.
I’m not sure why it’s been such a recent insecurity for me, or if it’s just one that I’m finally mentally ready to tackle. I make the effort to get up, actually blow dry my hair, do my hair, and get dressed every day that I can leaving the house or not, something I never felt the need to do before. I’ve taken the time to actually put makeup on to go into town if I’m not feeling badly, or to keep my nails painted. Honestly, I’m not sure if these are positives, because a few years ago I always accomplished all of these things, or if it’s the insecurities taking over. Feeling such a prominent insecurity is kind of uncharted waters for me. Don’t get me wrong, of course I have had all the same lows teenage girls go through, but overall I’ve always been pretty confident in myself.
I think I worry fewer and fewer people will get to know, or want to get to know, the real Hadley. To be perfectly honest, it’s something that I’m getting to know all over again. But I am SO excited about that and I want others to be also, I guess. See, the newfound insecurity is even coming through in this post, at least I caught it, because I’ve added “I think” to so many sentences like I need to justify my thoughts. I suppose the moral of my rambles here is this; I lost myself for a long time. And in getting back to myself, I’ve gotten so far that I’m able to face lows and insecurities that have probably been here the whole time. As much as that scares me to death, that also makes me want to pat myself on the back. I love this blog, I love the support this blog has brought me personally, and even more-so the support to others I will never meet, but I don’t want anyone else to lose Hadley.
Three years. 36 months. One thousand, ninety five days. Three grades. The cliche “time feels like it has flown by and not moved at at once” has never rung so true. October 26, 2012 I had my first seizure and never looked back. Since that first day in Spanish class, I can count on my fingers the number of seizure or attack free days that I have had. In so many ways I can’t convince myself it’s possible that this all started three short years ago, on the other hand I cannot believe I just used the term, “three short years ago”. It’s really odd to think back on that day, no memory of mine is so pristine. Waking up that Friday morning I felt awful but attributed that to having cheered in the rainy district game the night before, eating/sleeping poorly, and a fall allergy asthma attack. When Sean greeted me that morning, he said “Whoa, not feeling too hot?” Third hour I let him know I had passed out, he texted back “Atta girl!” These are perfect examples as to life before seizures. Before seizures became the norm, telling someone I passed out carried the assumption I just fell asleep at a bad time, commenting on the unexpected meant me looking like I got it by a truck, now the unexpected is me not looking like a character from The Walking Dead. My first trip into the ER, ever, came that Sunday after a second episode. The ER doctor didn’t run a single blood test or scan, instead he came in and racked it up to constipation. The guy literally squeezed as if he were extremely constipated and my dad literally laughed like this guy was an actual doctor. Funny enough he is now an ER doctor that I would prefer over some.
That whole first week I was so sick my everything was exhausted and I had pain deep in my bones. Many people suggested I get tested for mono, that never happened but I now wish we would’ve pushed harder for that. There are some recent understandings that a mutated strand of Mono can cause Sporadic Hemiplegic Migraine. That being said, when we consider the week before, at my aunt’s wedding, everyone asked if I was sick, at the time I didn’t think I was but six days later… just something more to ponder😉
A lot has changed in the last year, I would say more than before but I’m pretty sure I said that last year. lol. We’ve learned just how hard it is to live with a progressive disease. A significant dip in my cognitive function has been clear the past few months, at least in the memory department. I used to be able to recall the tiniest details for years, now I ask the same question over and over without noticing I’ve already gotten the answer. It’s so uncomfortable when I’m mid conversation with someone, like a nurse, and out of the blue I truly cannot recall a signal detail of the conversation, what I was going to say or what had just come out of my mouth. Days that happens I typically end up remembering zero of. But positively, I think I’ve grown most in my attitude. My understanding, learning, and mood have all changed significantly this year and I’m glad to say I’m confident that I have grown in that department.
Needless to say, when this all started we had no idea that we’d be wishing for 30 second pass-outs in the future. Three years ago, doctors told me I was dehydrated and stressed. Three years ago, my psych consult listened to all of my baggage and ultimately encouraged me to go back to the medical side of things. Two years ago, doctors labeled me just another teen girl with a conversion disorder and swore in 6-12months, psych would have me healed. Two years ago, well that psych consult was bad on my end. 😯But, she saw through my frustration and still told us to go back to the medical side. One year ago, doctors comforted me and promised to know “Hadley”, not just be another doctor unable to pick me out of a line up. One year ago, the psych PA ditched the consult out of shock that doctors had played hot potato with me like that, while the Dr applauded my ability to self advocate and be so knowledgable. I now wish my previous physicians would’ve bet their medical licenses on me being magically healed way back when.
This is another video contest prompt; “Show us your fight with HM this year” I think it was the perfect thing to get together, a video is the only way to truly show my special support over the year. Going through the pictures and videos made me a tad emotional, of course. I often am disappointed in myself for not being able to solve my own problems. Then again, I’m impressed that I get up and do life on some of the days I do. I never knew a blog would require me to take so many more selfies😂 That being said, the selfies themselves were a reminder that I’m not fighting for my life and to be thankful I’m able to get available treatments. There’s always someone out there who has it worse than you. 👇🏼
My editing skills are still in the learning process. Winners of this contest get rewarded medical bill scholarships.
So thank YOU, for reading this blog, for taking the time to send an encouraging comment, for going out of your way to come chat with me, for checking on my parents and brother because they’re living this too. And thanks for those of you who have taken it upon yourself to follow IHMF updates and want to learn. I can’t wait to read this post next year and laugh at what I’m good at then, and see what I need to get back to. Always learning!!!
One of the hardest and most nerve racking decisions with HM is deciding when an ER trip is necessary. The emergency department is filled with trigger after trigger. Whether it be the fluorescent lighting, loud beeping nosies or odd smells(I have the nose of a blood hound when I’m bad off), it’s probably one of my least favorite places to be during a nasty attack. Or ever. However, when I look like I’m having a stroke and I go days without being able to hold down a single medication or ounce of fluid, it is sometimes necessary. Before we got the diagnosis of Hemiplegic Migraine, we visited the ER more often for my stoke like symptoms than we do now. Thank goodness. That being said, HM comes with some scary symptoms that are sometimes too much for us to handle at home.
When my jaw locks open we always go straight to my rescue meds, IM muscle relaxer shot and Ativan pill. If I’m able to get these both taken quickly enough, they sometimes knock my jaw back into place. Unfortunately, the two times this has worked for me, it has only lasted two hours max before my jaw becomes locked again. It is always such a hard choice when debating whether I should load myself full of rescues at home, and then probably still end up in the ER only to be loaded with more medications, or if we don’t wait long enough for my jaw to get worse and go quickly to the ER. We’ve taken both routes and honestly, it’s still a debate every time this symptom occurs. At this point, we have never been able to break one of these attacks on our own, but multiple rounds of IV medications get it under control.
A couple of weeks ago my face swelled so much that my blood was coagulating, making it look like someone beat the pulp out of me. I woke up that Friday morning with the right side of my face throbbing, but I couldn’t come up with a good explanation as to why. We chalked it up to an allergic reaction, to who knows what, and tried my 100mg Benadryl shot right away. When this didn’t affect the swelling at all, we iced and watched my face closely. I tried a second Benadryl shot and my prescription Benadryl pills. Nothing. By the next morning my right eye was swollen shut, leaving me with complete blindness in my right eye. By that afternoon my left side of my face had started to swell and my left eye was in the beginning stages of swelling closed as well. The lady checking me out at the grocery store that day looked and me and said “Car accident?” I paused…but how the heck am I going to explain my crazy situation to her when I don’t even know what happened? Instead, I just said “Yeahhh, could’ve been worse.” She empathically told me she was glad I was okay. I walked away as fast as I could because we were about to lose it laughing. Sorry lady! I was finally convinced into an ER trip at 7 that night, even though the hospital can be a crazy place on Saturday nights. I got probably the best doctor I’ve ever had in the ER. Dr. Roberts actually read my whole chart, asked fantastic questions and ran several tests. We didn’t leave with many answers, but he offered admitting me and was willing and wanting to keep searching. After a long 9 hours I at least felt a little better. Ashley, Vanessa and I dragged ourselves out of of of the hospital at 3:30 in the morning. Yikes
There have been so many times that I wasn’t taken seriously in the ER. I’m labeled a “frequent flyer” thanks to the ridiculous amount of trips. I don’t think they understand I hate being there more than they hate seeing me there again. Usually, I’m either thought to be a drug seeker or they just want to fill me full of narcos and send me home. Neither is the right answer. I was once refused the meds I requested (Benadryl and Valium), given Fentanyl I had specifically asked not to get, written a script for a serious narcotic in which I refused, and instructions to “go home and sleep it off using the prescription”… all in the same trip.
Since I have begun presenting with more visible symptoms lately, and not coming there when the “Invisible illness” has taken me over, the staff seems to take me a bit more seriously. They can’t deny that something is wrong when my face is swelled up so much I can’t see my chest, or my jaw is stuck so badly I can’t speak. I guess that’s fine, as long as they help me when I really need it. It’s funny to watch the nurses faces change when they start to prep for an IV and I show them my portacath instead. You can literally see them start to take me more seriously, because I wouldn’t have a port if something wasn’t wrong, I guess.
Probably the most annoying thing about ER trips is the ridiculous amount of judging that comes along with it. My parents hate going almost as much as I do. But, for the most part, they understand when I say it’s time to go. For example, this Friday was a really really bad day. An hour long seizure and my right arm getting numb and paralyzed was just the beginning. My jaw quickly became locked, which earned me nothing to eat, drink, or medications to take along with an agonizingly painful night in which I scored zero sleep. Before office hours were over Friday, my mom and I called my local doctor seeking help, knowing how bad this was going to end up. All we got from that attempt was a nasty remark from his nurse who then hung up on my mom. So, Saturday we made the choice it was time to go to the ER, as I couldn’t spend another day like that. With my blood pressure climbing the triage nurse said 167/102 earned me an immediate pass back to a room. I’ve been trying to tell this people it’s like a stroke!!! Luckily, my doctor and nurse were both understanding and fantastic. But ER trips involve so much down waiting time. We rushed the last round of meds, my dad and I worried we were going to miss something we just couldn’t miss. We pulled out of that parking lot at 1:50, made it home to change into dress clothes and pulled into the location smoothly at 2:41. Score one for the home team.
Shaky and exhausted I’ve never been so glad to be rushed, or even more glad to make it to a destination in time. It was such a battle trying to decide if we were going to the ER this weekend but it paid off more than ever. A full day to say the least Saturday, including a long night. I loved feeling well enough to end the night snuggled up with Courtney. I don’t get enough nights of girl talk with her. I participated, with much energy, in family pictures and my Grandpa’s birthday lunch. I even drove to pick Kelsey up! Thank goodness for the good meds and steroids. It is times like this trip that make all the judging, waiting, debating, and hard decisions worth the trip.
I find myself stuck wide awake at 2am, again. I’ve gone through all the tricks you’re “supposed to do” to cure insomnia. I go down the list most nights, guess what? None of them really work. Hopefully my mom and Paula got more out of our two hour sleep class at Mayo than I did.
I sleep best with a TV on, even though that’s a big NO. I need the sound and general distraction to keep my mind from wondering a thousand miles a minute. If I make it through the nightly Friend’s marathon on Nick at Night I usually turn the TV off and try just music. Rarely does that work. Then starts the list of ridiculous things you can find me doing in the early AM hours; yoga, breathing exercises, stretching, mindfulness, oxygen treatments, ice, moving to the couch, moving downstairs, peppermint headbands. All of this on top of sheets freshly washed in Lavender and a handful of night time medications that would knock out a giant. Yet, here I am. Wide awake. Luckily, my favorite time to write is after midnight! Lol.
Tonight, however, is an extra rough night. The HM monster is in full swing. After a painful seizure this evening and shocks sending a jolt from the base of my neck through my fingers and toes, my right arm and leg are completely numb and paralyzed. All the while I swear I have ice picks sticking out of my face and in my eye. Having to skip my Tuesday infusion is going to be extra rough this week.
I wish I could explain just how odd it is to have zero sensation on half of your body. I tried running my hand under hot water tonight, just to see if I could bring some feeling back to it. Nada. If I wouldn’t have been watching my hand under the running water, I wouldn’t have been able to tell you that was happening. Being numb is such an uncomfortable feeling that is impossible to get used to. And then you think, “how is it uncomfortable if you can’t feel?” I guess it’s more mentally uncomfortable. It’s been quite a long time since my arm and leg have been paralyzed. I went several months where they would just get extra tingly, my leg would drag occasionally, but even that wasn’t a constant when my attacks were hitting.
Unfortunately, in the last few weeks the numbness, weakness and paralysis that screams stroke to so many, have been frequent and worrisome. Usually starting in my finger tips, the pins and needles feeling all HMers know too well has started to quickly spread all the way past my shoulder. Last week, we began noticing that as that feeling was becoming more frequent, soon after my right arm starting spasming and jerking out of my control. I tried my muscle relaxants, those had no effect. Eventually, the spams chilled out by themselves, which we noted as a good sign. That was, until my arm ended up paralyzed for the rest of the night. Luckily, when I woke up the next morning it was back to full mobility and almost complete feeling had returned! That didn’t last long. Boo.
Then, we have my leg. My leg has always shown more signs of HM than my arm. Last year it was fully numb and paralyzed for three months. Yep, awful. During bad attacks it was still dragging, and that was one sign that the Hemiplegic days to follow would be in full force. But in the last week or two, we’ve seen more signs of weakness. Several times, out of nowhere, my leg has completely given out and caused me some ugly falls. Not that I need extra of those. Two nights ago, I was walking through the kitchen when it totally randomly landed me in a heap on the floor. From the tips of my toes to my hip I had no feeling, but I was still able to move it normally, so I just ignored it best I could. Again, the next morning it was back to normal.
I hope I’m proved wrong, but sadly I’d be willing to bet I don’t wake up good as new tomorrow. Seizures have been rough all night and I’m still dragging my leg when I try to walk a little bit, or having to use my left hand to pull my right arm into a comfortable position. Trying to type this one-handed is actually slightly comical. Well, and slightly frustrating. I keep telling my right hand to reach for the letters and nothing happens. Ugh. It’s actually extra weird to have my leg numb because I damaged a nerve in my left leg with a shot a few months ago and have lost complete feeling in half of my left thigh.
I’m a mess. A painful, numb, exhausted, stuck, mess. And for tonight, complaining about all of that is okay. But not tomorrow! Tomorrow I have to get up, know it is a new day, and try all the secret tricks of making it through another attack.
One year ago today, October 9th I was diagnosed with Sporadic Hemiplegic Migraine(SHM). SHM is one of two types of a rare neurological disease, caused by a gene mutation. Familial Hemiplegic Migraine(FHM) and Sporadic Hemiplegic Migraine affect only 3% of our population, world-wide. Sufferers of both SHM and FHM present with stroke-like symptoms, visual disturbances, memory loss and more. Severe attacks may leave people with prolonged hemiplegia and seizures, these are the attacks I suffer from most.
Want to learn more? Check these out!👇🏼
In the last year I have found peace with having fought two years for a diagnosis. I’ve been grateful to have found the HM community to lean on and learn from. We’ve found comfort in Hemiplegic Migraines, in the most odd and unfortunate way. We sure have learned a lot this year!
This is a post I shared on my original blog, the one I kept a secret😉, the day I got to go home after those initial 15 days in the hospital.
After being poked and prodded, scanned, tested and asked uncomfortable questions, 8 rounds of blood tests, two IV, one IV infection, one IV knocked into a nerve, 11 shots in my butt and one everyday in my stomach, my first “surgical procedure” getting my PICC line, my second procedure getting my endoscopy, 3 ultrasounds, a couple of hours worth of scans, getting woken up 5 times a night orrrr not sleeping at all, getting infusions around the clock, having good days and bad, and staying in the hospital 14 nights…….I’m happy to say how worth it all of that was. As my “anniversary” rolls around again, soon, it’s nice to at least feel knowledgeable and not so shocked or in denial. It’s chronic, so it’s something I’m stuck with. In typical Hadley fashion, it’s amongst the most rare so it doesn’t come with a treatment locked and loaded. We’re happy to be doing what we can and letting my body breathe a little after so many heavy drugs is best for now.”
I’d say some things have changed in the last 365 days.
Two IV’s is for wimps💁🏼
Talking about getting shots in your butt doesn’t ever stop getting awkward. No matter how you put it. No matter how many times. 🙋🏼My dad gives me shots in my butt. 🙈See. Still awkward.
3) PICC lines and edocscopys are hardly surgical procedures.
4) I hope my writings I share aren’t so whiny!!
5)….I was serious about heavy drugs. I don’t remember writing this and couldn’t tell you these details otherwise. Seriously.😂
Fun night in the city with my momma the night before 🙂
On one last note, if you are interested in purchasing a shirt, all funds raised from this shirt will go directly to Hemiplegic Migraine research and trials to be done in the United States.
Last weekend, I drove in town multiple times for the first time in three years. Some people are going to flip out when they read this because it “isn’t safe” or “too risky” and many other comments that all fall under the judgement umbrella. My parents wouldn’t let me do something that could possibly harm others, and even more so, possibly harm myself. If I was feeling good enough to voice that I wanted to drive, we were going to take that opportunity. I have to tell you, I can think of very few times I was more proud of myself than when I parked the car in the driveway after a smooth trip in town all day. And I know that I have never been as confident behind the wheel as I was this weekend. It was like I was finally gripping independence in my hands, even if just for a short while.
Later that evening my family and I were on the way to my grandparents house to soak up the perfect weather with pizza on the patio. In the car, my Dad said, “Hadley, today you win.” Confused, I asked him to elaborate. My Dad proceeded to squeeze my shoulder and say, “HM didn’t win today. Today, you can look that monster in the face and kick him while he’s down because HM lost the battle today.” By golly he was right. In that one day, I had found it somewhere in me to not only drive, but to also shop, run down the stairs, and enjoy being outside with the family fishing. It didn’t matter that I was exhausted or that the beginnings of a drooping face were clear, all that mattered to any of us was that I could count that day as a win. And for that, we celebrated.
Unfortunately but not surprisingly, I dropped hard to the floor that evening and had the most powerful, intense, and long seizure I have had in months. My body curled into the backwards “C” that we haven’t seen in so long and mid-seizure my jaw locked completely open. I can only imagine the intense “we just can’t win” feeling that took over the room as my family and grandparents watched my body violently attack itself, leaving them helpless. In those cases, I guess I’m glad to be unconscious.
After finally waking up and getting myself to comfort on the couch, Jax, my sweet four year old cousin, come over to chat with me. Just before, he had been egging on a playful conflict with my Dad as he cheered on Kentucky, since Uncle B was cheering on Mizzou. I was expecting a scream of silliness but instead, Jaxson hit me in the emotional department. He asked me why my mouth was stuck open, a question I attempted to answer but totally lost him in the process. The sweet boy climbed up on the couch with me, looked at my hurting face, touched my jaw for just a second and quickly pulled his hand away. I was going to tell him it was okay, he didn’t hurt me when he touched it. I wanted so badly to know what was going through his kiddo of a mind. And then he told me.
“Hadley, why do you get such bad headaches? I want to know why.” As if he knew there was no response possible to that, he curled up under my blanket and let me snuggle up tight with him. Jax has forever been my snuggle buddy, but since his quick change from “my baby” to a “big kid” he hasn’t sat still long enough for many snuggles. As the rest of the family was joining us in the living room to watch the end of the football game, Jax turned back over to me and said, “It’s because of skunks.” With that matter of fact statement I tried to motion for him to give me a kiss. That was a total miss and we settled for an accidental head bump instead. Jaxson Glen, we’ll pretend this is all because of skunks. 🙂
Although my mom and I’s night didn’t end until we got home from the ER at 2am, having to get my jaw fixed, I was still in better spirits than I am after most days that turn into let downs. Earlier in the night, when I had finally peeled my eyes open marking the end of that awful seizure, I was already crying. As I had slowly made my way back to consciousness I could feel the affect a bad seizure leaves me with, making it feel like it’s possible to have from your hair ends to the tips of your toes raging with hypersensitivity. I was immediately aware that my jaw was badly popped out and locked open. And I knew as soon as I tried to walk my HM side would be dragging and slow for days to follow. I felt each tear hit my cheek as my Dad helped pull my heavy head off the floor. I could feel the stressful mood of the room, while all the excited and positive remarks from earlier in the evening slammed my head. I felt terrible. My dad was helping to prop me up as I cried, more out of frustration than anything. The only words I mumbled to him were, “Do I still win, Dad?”.