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? 😉🙄

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

Abnormal Psychology

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

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

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

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

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

STB

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

IMG_6940
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 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.

hospital-slang-005

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.

IMG_5567       IMG_3171      IMG_3227 IMG_5619

~Had

Posted in Beating Hemiplegic Migraine, Hemiplegic Migraine, Today I Win, Uncategorized

October 9th. One Year.

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!👇🏼
https://rarediseases.info.nih.gov/gard/10768/hemiplegic-migraine/resources/1
http://ghr.nlm.nih.gov/condition/sporadic-hemiplegic-migraine

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.
  1. Two IV’s is for wimps💁🏼
  2. 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.😂

Willis Tower in Chicago!

 

Visiting “the bean”…what I wanted to see most but have no memory of. Lol

    

 Fun night in the city with my momma the night before 🙂

Hard Rock Cafe!!

  

 

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 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

A View on HM from a Non-HMer

Because my best friend has been dealt the HM card, I have had to learn a tremendous amount of information and we have had to change the way we do things. For the longest time, there were no exact answers as to what was wrong. We knew what happened and could sometimes tell when or how soon but we did not know what or why these things were happening. And then she was given the HM diagnosis. It is still one of those diseases that I am constantly questioning because it affects people in completely different ways. But before all of this happened, her world was completely different. 
 She was one of those people that wanted everything to be planned out and was also the type of student that always pushed herself and wanted to be the best. She was an excellent cheerleader and had so much energy and life in her. She also drove me around when she first turned 16. These are the types of things that were taken away from her because of HM. 

Obviously plans changed when her health started to make her life miserable. It was literally one thing after the other and her condition was always changing. As someone not living the life and being there to support her, there really wasn’t much I could do. I know that Hadley and her family spent most likely countless hours or even days trying to look for answers and I know that I did my fair share of also looking. Hadley would send me names of diseases or conditions and ask me what i thought and if it fit everything that kept happening to her. I also had to convince her that no, she did not have cancer. Darn WebMD! But when they finally got the answer to the many challenges she faced everyday, it was still hard because there were no “fixes.” At least now she can tell people what the name of her disease was, even though nobody has ever heard of it and it is the constant explanation of “HM presents like a stroke, blah blah blah.” The usual. Her life has yet to be the same since her Hemiplegic Migraine diagnosis.

 Now, Hadley has weekly infusions, which are wonderful with her port, emergency room visits when the pain becomes unbearable, IM injections and a ton of different medications. Because of HM and her medications, she battles nausea, seizures, insomnia, dehydration and lock jaw, all of which are only a handful of the daily struggle. Being a supporter of an HMer requires me to make sure that she is eating and drinking something occasionally and offering to hold her hair if the nauseas became too much. Or even spending the evening with her when she is unconscious and seizing knowing that when she does wake up, she’ll know that I am still there for her and willing to go sit in the emergency room for 9 hours because her face swelled up. Which is another new symptom of her HM apparently.   

 Honestly, besides the drooping of her right side, you would never know the challenges that she faces every single day. Because of this, our friendship has grown stronger and has definitely required more thought. Before we plan anything, I know that there is a chance that we will have to raincheck our plans. HM doesn’t stop for anyone! And then there is strategically planning our outings to avoid any possible triggers. If it’s too hot, we plan something indoors. If there is any chance that it will have loud music or noises, we go ahead and cross that one out. Why make an already awful migraine even worse? We do the “normal” things as much as we can, keeping in mind that we may need to take breaks in between or stop for a good ol Benadryl shot. We have even started having to discuss what day she should get her infusion in order to make it to certain planned activities. It’s that extreme because she has more bad days than good. Another part of being a friend of someone who suffers from HM is knowing their limits. Well, maybe this is just Hadley because she is so stubborn! But really, she tries to push herself as much as she can and I have had to learn when it has been enough and when it is time for me to step in. Knowing when and what type of situation she can handle is one thing that I have had to adjust to that I don’t think other people even consider. Actually, I know for a fact that it doesn’t cross other’s minds unless they can physically see that she is not looking well. That is something that is so frustrating to me. And that’s not even the worst of it.

 Seeing my best friend in so much pain is not something that I wanted to see. Ever. But I knew that at this time, she was going to need someone to be there for her, needless to say that when all of this started, we had no idea how crappy it was going to become. But, there wasn’t a single thing i could actually do for her and it absolutely broke my heart. It was not only affecting Hadley in every way imaginable but it was also affecting me. There would be times when I couldn’t handle it and my mom would hold me while I cried. If it affected me that much, can you even imagine what it was like for the person suffering from HM?

  HM has changed her life in basically every way possible, her family’s life, my life, and with this blog, hopefully it’s changing someone else’s life too.

HM is awful and I pray that HMers find relief at some point. 

And to all of the people supporting HMers, stay with it. It’s a long, unpredictable journey that they are battling and they’ll need someone at some point.   

~Ashley

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Infusion Treatments😷💉💊💪🏼

According to aafp.org, of the 51% of chronic migraine sufferers that report serious disturbance in quality of life, 83% percent of those people are found to be treated best with intravenous medications. These numbers are backed up by the 62% of chronic migrainers who find substantial relief in long term infusion therapy.

My body has proven these numbers to be very true as I have always responded to IV medications, still having to be in high doses, whereas I have no reaction to oral medications. So, although the ER is full of triggers and is a temporary fix, we have found it to be the necessary step for my body. My parents and I spend our bonding time in the hospital more than anyone knows. During my Diamond hospital stays, never less than a week, I am on continuous IV therapy that my body depends on.

   Emergency Room visits and Chicago trips just aren’t a practical way to mange life. I already have to go to Chicago every 90 days. Between attacks, I’m typically extremely hypotensive but during an attack I shoot up into the hypertensive range. I am unable to maintain my own hydration, at all. Although I take the maximum dose of Magnesium daily, my levels have just continued to drop. So, in March, Dr. Diamond decided to start me on weekly infusion treatments as a preventive, meaning I would go each week even if I wasn’t feeling bad. I would be getting fluids for hydration and blood pressure maintenance, magnesium to supplement my levels, Phenergan to help my crazy nausea, a medication for my seizures, a med for pain(but no opioids for me!), and my lucky drug, Benadryl, in high doses for my migraine.

 My mom, Graham and I found ourselves in the infusion center, surrounded by sick, elderly people, ready for my first infusion treatment. I was given the choice between a recliner or bed room. I chose a bed room so I could nap. I had a quiet, private room, able to turn the lights down and shut the door. The two chairs in the room for my visitors were even kinda comfy! I started to relax as I jumped right into making myself at home, moving everything to how I like my hospital rooms. Graham is uncomfortable with how comfortable I am in the hospital setting. Poor guy.

 Lewis was my nurse that first day and he immediately made me feel better. He took the time to listen and really answer each question I had. But of course, he struggled with my crappy grandma veins. Lewis got me through my treatment keeping me as comfortable as possible, he must’ve done something right because I slept for four of the six hours! He still comes and checks on me when he sees that I’m in. Kelsey approves of him because he snuck both of us some chocolate ice cream last week, annnd tied Kelsey’s glove balloon😉

 (gotta keep her entertained somehow😉)

Although weekly hospital trips aren’t ideal or exciting, I’m thankful for the easy, smooth, helpful flow of the infusion center. But each week it was getting harder and harder to place a good IV. Multiple nurses would try, several veins were blown out, and NICU lines were making for a long(6 hour+) painful trip each week. When my veins weren’t healthy enough for a mid-line I finally went under the knife and got my portacath placed under my collar bone. This improvement cut my infusion times in half, made the reception of the drugs safest and made it basically pain free each treatment. Hallelujah!🙏🏼🙌🏼

    (NO more IVs!!!)

  (Being bionic woman is extra cool)

All the people willing to support me and go with me to keep me company during an infusion just makes me so so happy. At least it gives my parents some downtime? Ehh. Graham loves to come sit with me but is sure to watch the nurse like a hawk. He knows exactly how it should go, step by step, and is not afraid to speak up when something is skipped. That’s a lot of responsibility for a nine year old. Parker plays with every gadget in the room….twice. Including the nurses😉 My grandmas and aunts have taken their turn without complaints, too. Love them!

  (We didn’t leave until 5:30am 😳)         

Even more special, either Ashley or Kelsey is there almost every week. Ash loves to badger the nurses with questions, yet is still always mind blown by something new every time she comes. Kels and I take advantage of the perfect time for lunch dates and Pinterest pinning. Wellll, she actually just takes advantage of out of it Hadley.😂 Zach and I got stuck with a two hour extended infusion and cranky nurse. The treatment center closes at 5, I think we walked out at 7:30. Oopps. Zach may never volunteer again, I was just thankful for the good company and Mugs Up date!

        (Skype dates: the obvious Hospital must-have)

So, each week, for the last three months, I intial and sign the consent forms before the receptionist has time to explain it to me, then check in with Nurse Kayla for my room assignment. She always smiles and sends me to my “regular”, room 5, that is oddly comforting to me every time. Maybe next time I’ll share my Captain Crunch. Ha! Passing around “good mornings” with my nurses and joking about who called dibs on me this week, happily makes me feel like more than just the next patient. I think all of the infusion staff has stopped by for a high five or hug for winning the port battle😊 I’ve really gotten quite comfortable and have appreciated the honest communication and backing up the patient.

So, each week, indefinitely I will have my port sterilely accessed and get: my pushed medications quickly, my infused meds safely, and my fluids dripped over two hours. I’ll keep making the best of the trips by taking naps and enjoying the company I have for the week. The treatments are completely worth it, so I unplug(mostly) for the day and usually settle in with a good movie to watch, or I’m in a med coma state. I’ll keep walking out of the hospital feeling like a totally different person from when I walked in, and that’s the best feeling.

 (She’s actually de-porting me for the week)         

Unfortunately my Hemiplegic Migraine attacks have begun to land me in the ER more and more frequently. In fact we got home from the emergency department at 5:30 the other morning and had to be back in the hospital for my infusion at 10 AM. Don’t worry, I’m easily Boone Hospital’s # 1 patient. So, I’m very thankful that these weekly infusion treatments have made a distinct change in my chronic migraine, canceling out the ER trips for those as well. I have been pleasantly surprised with the mostly, smooth communication between my Chicago doctor and Columbia doctor. That’s way too rare. I could write a never ending book about the frustrations us frequent flyers run into within the hospital system, or I could just become president and change the medical world, right?! Yeah, noo thank you. At the end of the week, these inconvenient infusions are 100% worth it to help keep my body rollin. In fact, on an average week, a day or two before my treatment I begin to drag. Basically, I just need a swift kick in the rear once a week💁🏼 I also couldn’t be happier with my port, best decision I have pushed for. Although drugs may be hard on your body, they are sometimes necessary. If you think IV therapy could be a game changer for you too, look into it! Work with your doctor to come up with the best cocktail for your health, it’s all about trial and error. Listen to your bodies!!!

   (Standing port proud)