Posted in Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, MU Health Care, Seizures, Today I Win, Uncategorized, University ER, University of Missouri Health Care

YES finds a way.

A couple of months ago the way my mom and I were treated at a local hospital, one that we depended on and begged for answers, was absolutely NOT okay. I applaud my mother for keeping her composure that night as we sat fearful, confused and angry. I mean angry. I have used explicit detail to describe some horrible experiences to many of you, yet that night was the most scared I have been in my entire health journey. We needed help. I needed help. But instead it felt like we were being suffocated by health system politics and the poisonous words of one doctor. Though I wish I could call that business and each person involved out for everyone else to gawk at, I knew that wasn’t purposeful. Instead, I waited until I could write this post with a positive light to be shined on it. Never did I think two months later I would have such a positive post to write that I knew I couldn’t cram every awesome detail in. But, here I sit.

Dear Doctor

Walking into the University of Missouri hospital in the middle of night, deep into an attack, with so many unknowns and even more emotions wasn’t something my mom or I felt like we could tackle that night. The second we walked in the door, my aunt, who normally works weekend nights and it was Tuesday, was sitting in triage. I happened to glance that direction trying to get a feel for the new place I would probably be getting to know quite well. I did the quickest double take ever when I saw Shelly, who immediately pulled me back and began the triage process without question of what brought us there. I was quickly assigned a nurse and doctor. As we waited for the doctor to come in my mom and I looked at each other, communicating the deepest hate for this process without having to speak. My sweet doctor came in and immediately reminded me of Grey’s Anatomy doctor Arizona. ❤  As we talked she took a second to stop and say, “Honey, why did you wait so long to come in?” With responses from my mom and I like, ohh if you even knew and big sighs she ended with, “People come in here for the silliest things. This is not silly. Don’t wait so long next time.” My mom called my grandma back crying, an hour before she had called her out of question, this time all she had to say was, “They listened”.We didn’t have to tackle anything that night, we just had to tell our story and instead, they tackled it.

Two trips later, the receponist checking people in didn’t ask why I was there, instead said, “Hemiplegic Migraines, right? You don’t forget a teenager who looks like they’re having a stroke.” Again, we were shocked at the level of care. That night on-call neurology visited me. Who ever woulda thought to call neuro down for a neuro patient in the ER, huh? Lol. The neurologist and his attending, who I couldn’t take seriously thanks to my brother’s new persona, Raj, both examined me concluding that yes I was most definitely weak and suffering from a Hemiplegic Migraines. They also noted the swelling of the right side of my face. In fact, all the doctors wether PA or attending that came into contact with me examined me. Ground breaking. Worries of my high heart rate were spread, and after the third person came in to make sure I wasn’t keeled over with chest pain and my heart rate was indeed that high, my mom asked what a HR should be. The answer? Under 100. Mine? Sitting pretty in the 150-160’s. That trip was a long one and the list of attempted medications was quickly growing to match in length. I pleaded my apologies to my nurse as I was so frustrated that my medical team kept trying and my body just would not give in. My nurse responded with, “Why are you apologizing? I’m sorry we haven’t helped you yet.” Tears. I was admitted that night in hopes of more recovery where they could continue to monitor me and help me. It had been a long night so my aunt swung by to check on me and offer some humor, everyone thought my dad was my significant other. Why does that ALWAYS happen in hospitals?😂  I was given steroids every six hours to help the swelling. My old neurologist once looked at my swollen face, and after swearing to him I wasn’t self harming, concluded, “Your muscles are probably just fatter on that side.” I kid you not.

Every time we’re forced to make that trip we cringe at the gamble it is. But really, so far, these people haven’t made it a gamble. I’m treated like a human being in crazy unfair pain. I told my last doctor, “unfortunately I come in here a lot.” She said, “Well I completely understand why you do.” I’m not used to my vitals being monitored and taken seriously, so seeing how high my heart rate and blood pressure can get each time is eye opening, and also probably means that that has been the case for awhile. Unfortunately, the “other guys” would just turn the vitals machine off when it sounded, or better yet not hook me up at all.

I seriously have a note saved on my phone with quotes of how these doctors and nurses treat me, mostly because we’re just waiting for the other shoe to drop. I wish making a blog with quotes from my old doctor compared to quotes from my ongoing experiences was acceptable, or I wish I could just pack this post even more full of examples of the care I am receiving. It feels like a whole new system. I’m also thankful to have had my aunt advocating for me for so long, more than I ever knew. I come into contact with ER staff that has heard stories about this for awhile, so they know I’m not just really good at faking. I never thought I’d be posting about such excellent local care, I just pray that it continues. The University of Missouri Health Care slogan reads, “Where YES finds a way.” and my goodness have they achieved that.

MU_Billboard_YES_finds_a_way

I have an appointment coming up in about a week, so cross your fingers, eyes and toes!!!!!

fingers crossed gif

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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, Vlog

Rare Disease Awareness Day 2016🤒🤕😷

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!

 

Hey medical community, did ya catch our drift? 😉🙄

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.
Posted in Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Seizures, Today I Win, Uncategorized

Watch my Week!

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.

ER Post ER 2 post ER 1

(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!

http://www.booster.com/dashboard/campaigns/2832722?status=

 

Posted in Uncategorized

Writer’s Block is Real

Another month, no blog?! I’m bummed too. I have 17 drafts started and saved, but none have made the cut. I’m stuck in a rut of what to share, what do people want to know, and should I “teach” or keep it more personal? I’ve spent so much time scrolling through other blogs, creating a partial piece from a promt or trying to doodle up ideas for hours. Yet here I am, post less and missing writing! So, I’m throwing a bone to all of you. What do you want to see or learn or read?!?!😁 

Posted in Chronic Migraine, Daily Migraine, Hemiplegic Migraine, Seizures

Hadley; noun

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.

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😉

I hope this reached some level of making sense.

Posted in Beating Hemiplegic Migraine, Hemiplegic Migraine

Anniversary or Un-iversary?

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😉

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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.

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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. 👇🏼

https://www.youtube.com/watch?v=Oj8d1FPT7kw

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!!!


What I’ve gotten myself into this year:

  • 5 Chicago Trips
  • 50 days inpatient in Chicago
  • PICC line placement
  • Port-a-cath surgery
  • At least 20 IVs…probably way more
  • ER trips…uhh I can’t count that high.
  • 31 Infusion treatments
  • 5 ultrasounds
  • 2 MRIs
  • 4 CT scans
  • 2 MRA scans
  • 6 EKGs
  • Endoscopy
  • Botox
  • Diamond Headache Clinic
  • Mayo Clini- Rochester

download

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.

Includes 3 styles with a black, grey, or white option for each.
Includes 3 styles with a black, grey, or white option for each.

Order Here!👇🏼

https://www.customink.com/g/hrr0-00aa-k9cq

Posted in Beating Hemiplegic Migraine, Hemiplegic Migraine, Just Keep Keepin On, Uncategorized

Frequent Flyer Miles

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

1st picture- right when I woke up. (mom took the picture)
1st picture- right when I woke up. (mom took the picture)
2nd picture- a few hours later (still the right side, selfie angle)
2nd picture- a few hours later (still the right side, selfie angle)
3rd picture- about five days after first appearing.
3rd picture- about five days after first appearing.

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.

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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.

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~Had

Posted in Beating Hemiplegic Migraine, Hemiplegic Migraine, Just Keep Keepin On

Just Keep Keepin On

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.

This is a completely accurate depiction of how the inside of my head feels. Thanks Snapchat. Might be a tad too graphic for this. Oh Well.

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.

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So, this is actually the part of my left leg that is constantly numb. Weird how you can see the parts that get goosebumps and the parts that don’t, huh?

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.

keepon