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Join the Team!

The Migraine Team, that is!

My Migraine Team is a social media site designed for people who suffer from migraine, as well as other headache disorders. You can search through treatments and get feedback from actual sufferers who use or have used them. There are providers there, although not all of them are listed, and you can build a team of people in your area, who share similar migraine types, etc.

If you are a member, feel free to add me to your team! Maybe even leave your profile link in the comments section on this post for others to find!

It is a really great way to remember that you are not alone.

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This is my profile photo (at least as of 8/4/17), and I am listed as “Bunny.”

Find me here:
Bunny’s MyMigraineTeam.com Profile

💖Hearts and Sparkles!💖
~Bunny~

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Chronic Illness and Conventions, Part Two: Have a Plan for the Unexpected

Yay, part two of the Chronic Illness and Conventions series! Remember, this is not only relevant to conventions, and can be applied to any situation when you are not at home and among strangers. Theme parks, concerts, whatever!

Here is the link for part one, in case you missed it.

Part two is all about Planning. Planning for the unexpected, having a plan for anything related to your chronic illness. Here are some examples:

  • A person with diabetes will have insulin/glucose tabs/snacks on hand.
  • Someone with a chronic pain illness (fibromyalgia, lupus…) will have a walker or cane if their pain can reach that point. Maybe they will have pain medications within easy access.
  • Asthmatics keep a rescue inhaler nearby.
  • Someone with extreme allergies will have an epi-pen on them.

Now, I know what you are thinking, Duh, Silly Rabbit! Of course they will have their supplies with them! I know that. The point of this post is not “don’t be irresponsible,” it’s “have a plan.”

The reason that I am having a full post in this series about having a plan and dealing with the unexpected is because it is seriously important. Now, in my experience with working with conventions in both hotels and convention center venues, there will always be resources available. Security teams from the event and the venue, as well as local police, and medical personnel is required by many (not all) venues during large events (like the popular dances at conventions). They are there to help you if you see something (like possible shoplifting or harassment), need something (like you locked your keys in your car or lost something), or in case of an emergency. These resources vary by event and by venue, so if you have any concerns, feel free to email the event staff in advance, and they can tell you which will be at their event.

Now, I cannot stress enough that while they are there to help you and keep everyone at the event safe, they have to keep everyone at the event safe. This could be thousands of people. They are not there to focus on any one individual. That could prove unsafe for the other patrons present. Now, don’t get me wrong, if there is an emergency, that emergent case is paramount and will be the main focus. However, if I have a migraine, I don’t expect them to bend over backwards and allow me to camp out wherever I please until I recover.

That is my responsibility.

This, of course, does not apply to anything that falls under the Americans with Disabilities Act (ADA). If you have any concerns about service animals, wheelchair accessible areas, etc, feel free to contact the event staff! They will be more than happy to comply! With this in mind, if you have some sort of necessary accommodations that fall under ADA guidelines, contact the event staff and ask about such specific accommodations in detail. The people who run conventions and other such events are not psychic and cannot predict every individual need for every possible disability that may or may not be present at their event. For example, if you suffer from Epilepsy or seizure disorders, you may want to ask about what lighting is used in the dances, and if they have a policy about strobes. As someone with Chronic Migraine, I struggle with strobe lights, but when I am managing the Main Events room at Omni, part of the schedule includes a rave-style dance. Typically, strobes are a staple. Since this is usually the last event of the night, I can get away with slipping away not long after it starts (a perk of having one of the co-owners of Omni be the DJ and Tech Chief!). I don’t expect him to not use strobes in my presence, or to make the music softer while I am there. I make myself scarce and go to bed.

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Friends dance together during a rave at Omni [Fandom] Expo in 2015. I have seen several occurrences over the years of friends looking out for each other over the course of a con weekend.


❄️Note: Omni is a unique event. DJ Shadowfax hosts a signature event called The Blackout Rave where strobes are a common accent. Since he has many friends who have seizure disorders and since I have Chronic Migraine and photophobia, he starts the event with a “strobe-free” period. This is a special case, and should not be expected at every event! This is his choice!

Just remember that it is your responsibility to know what is in store at an event!

Now, back to the planning! You should be prepared in case of practically any circumstance.

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Chronic Illness and Conventions, Part One: Understanding Your Illness

In my “About Me” post, I briefly mention that I am a cosplayer. I also work at one of my local conventions, Omni Fandom Expo, as their Main Events (or Ballroom) Manager. Basically, I have the job of making sure that anything that happens in Main Events happens when it is supposed to happen as smoothly as possible. I have to think on my feet, and make sure that if it looks like something is going to run late, how can I stop it from starting a chain reaction and delaying the rest of the convention.

It’s a ruddy pain in the fluffy bunny tail, but I love it.

One of the associates at Omni told me that I should write a series of posts directed to people who go to conventions, or want to go to conventions, who struggle with a chronic illness. (❄️Side note: If you are not a convention fan, but you frequent places like Theme Parks, you can definitely apply these posts to that!❄️) So, here is part one!

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And I Didn’t Even Get Ice Cream?

To me, there are several “types” of migraine. There are the sinus migraines, where it feels as though a clawed monster is trying to rip off your face and your eyeballs with its bare hands. Then, there is the run-of-the-mill migraines, which seem so generic that there is a part of you that sees them as routine, which is incredibly annoying. Tension-based migraines, the ones that usually come after a night when you wake up with a stiff neck, and it feels as though the muscles and skin in your head has all fused together into one big pain-ball. Menstrual migraines for the ladies out there, the ones that feel as though your brain and your uterus are getting scooped out with a grapefruit spoon (and for those of you who aren’t familiar with this piece of cutlery, it’s a spoon with a blade on the end). There are the ice-pick migraines that feel like you’re being stabbed through the eye socket…the list continues on and on. There is one that I hate the most out of all of them.

And that includes you, Mother Nature and your cursed grapefruit spoon.

The BRAIN-FREEZE MIGRAINE.

Yes, indeedy, and the best part about this bad-boy-of-death is that when I describe it, even the non-migraineur can understand it! It is the most relatable SOB out there.

And I hate it so.

It’s like this: Yesterday, I go to work, and I am feeling oddly…good. Which is weird for me. Usually, I feel passable, no complaints per se, but things could be better, you know? Things are going pretty well as far as days go, I am meeting the most adorable stinkin’ children in the universe, I found myself smiling without having to remind myself to do so (I’m usually so tired that I become a regular space cadet). Things are good. My first break rolls around, and I head to the break room with a bag of almonds with a couple of mint m&ms to snack on (it’s a bit early for lunch) and to put some ideas into a notebook for when I get going on my online crochet shop.

The breaks are always shorter when you are enjoying the use of your time.

Anyway, I begrudgingly shove my notebook, (erasable) colored pencils, and doodads into my pouch and head out to get back to work, when it happens: I walk through a cloud of cheap, heady body spray.

(Side note: WHY do all cheap drug store body sprays smell the exact same way?!?)

Instantly, I feel pain settle above my right eye like the way my cat decides that the dead center of my bed is a good place to sleep.

Neither are convenient.

I feel some vertigo hit, so when I get back to work, I duck into the back and take two aspirin from the first-aid kit and a meclizine (that’s what makes Dramamine work, just without the added anti-emetic) from my pocket pill box and continue with my day. During the course of the next handful of hours, I am writing down notes to put into Migraine Buddy later, and I take another two aspirin about 5 hours later. I am using my go-to work-friendly reliefs, like my peppermint oil, and I think I have a good handle of things. There were a couple of times that I thought I was going to have to throw in the proverbial towel, but I would look at the clock and remind myself that I (for example) only had two hours left.

I can do this,” I would say to myself.

On the way to my car, I can feel the afternoon storms coming in (Yay, Florida…), but I still think I am good. The pain is holding steady at a solid 5/10 (for a headache, maybe a 2.5/10 for a migraine). It sucks, but it’s nothing I can’t handle. I’m not as dizzy, I am not nauseous, just a headache that is more “showing potential for migraine” than an actual migraine, if we are calling a spade a spade here.

I call my best friend (via Apple Car Play because hands-free for the WIN), and start my usual drive home. The pain grows worse.

The rains come.

The pain gets worse.

Bugger.

By the time I get home, I am queasy, dizzy, seeing spots, and downright miserable. I say my greetings to my mom, tell her I am just going to go to bed because I was in the midst of a bad migraine (the pain is now a pleasant 8/10). She asks me if I took anything, I told her about the aspirin and that it’s too soon to take more, so I was going to see if sleep would do it.

I get into my pjs and climb into bed, and Matilda (the cat who likes to sleep in the center of the bed) joins me. I rub some Biofreeze onto the right side of my head, slip on a sleep mask I had made a while back (it loops around my ears rather than use an elastic back around my head), and I’m out within minutes.

About two or so hours later (what is time, again?), I wake up to that brain-freeze migraine. It literally feels exactly like when you eat ice cream too fast, only it’s focused on one side of your head and it doesn’t go away, no matter how hard you push your tongue against your hard palate.

I debate asking my mom to take me to the ER for an IV and some O2.

I take two naproxen with my sumatriptan and slip the mask back on.

My mom comes into the room to check on me, and I am a panting, shuddering, mess. I let her know that I took “the good stuff” and I was going to see if someone would be able to take my shift the next day, because I could tell that this was going to stick around (that is actually rare for me). She offers to use my scalp massager on my head. I immediately agree, knowing that I was far gone enough for it to have little effect, but it will relax me. Maybe I would fall back asleep.

Once I resembled a poodle, I said I had had enough of it, and she asks if there was anything else I needed. I inwardly groaned, because I had a hunch and I HATE asking for this: I needed help with some pressure points on my feet. Since my mother is a freaking saint, she obliged, and worked on a few pressure points on my feet while I worked with the ones on my hands.

BLESSED SWEET RELIEF!

The pain dropped to a 7/10! It felt less sharp! Barely, but I’ll take it!!!!

She brought me grape juice (which apparently is supposed to help, according to Dr. Internet and Nurse Pinterest, so who am I to turn up my nose at a possible relief method?) before retiring herself, and I managed to give away my shift a few hours later. I disabled my alarms, texted Mom that I was off, and went back to sleep.

The migraine was not completely gone until after 1 today. So, from about 10:30 on Tuesday morning to after 1:00 on Wednesday afternoon. With brain-freeze style pain from 7:00 Tuesday night to some time really early Wednesday morning.

Next time, I think I will take the ice cream.

💖Hearts and Sparkles!💖
~Bunny~

An Letter for Children with Migraine

Recent studies are pointing towards Chronic Migraine being a genetically inherited disease over a random neurological condition. So, parents or potential parents who suffer from migraine, there is a good chance that one or more of your children will, too. My father has migraine, so did his mother. Other family members do, too. I have a twin who gets them occasionally, but I get them chronically. Genetics are a strange thing, eh? So, while I was laying in bed on my day off being lazy, it occurred to me that I need to focus some of my posts towards children. I was six when I got my first one. Six years old. That’s first grade. If it was not for the fact that my mom witnessed my dad’s migraines and had suffered them in the past herself, we would not have considered migraine as a possibility for my suffering.

Here we go:

Dear children with migraine,

I know it hurts. I have been where you are, and it feels like you’re dying. Everything hurts. Your eyes, ears, even your nose and teeth probably hurt. The TV is probably making your stomach feel sick. It takes every bit of energy to roll over, and you probably have to crawl to the bathroom. It’s okay.

If you get sick, it’s okay. It happens. No one will think less of you. As you get older, it may get easier, it may get harder. Don’t worry, though. You are strong. The migraines will make you stronger. Soon, you will able to tell when one is coming. You will know it is time to take some medicine. You can’t swallow pills yet? That’s okay! Many medicines come in liquid form, or you may be allowed to crush it up or open the capsules and mix it in something (Mom or Dad will know if you can). I recommend applesauce cups with some kind of fruit flavor (berry was my favorite when I was little, since it covered the taste of the medicine best). Take a bite, then wash it down with a swallow of milk (or your favorite milk-substitute). It may not taste good, but it will make you feel better. As you get older, you may learn to swallow pills.

Lay down in a dark room with something cold on your forehead and try to sleep. You will feel better in the morning. The migraine may last a few days, but it will feel better each day. Have your mom or dad keep a food journal, see if they can help you figure out what foods may give you migraines.

It will get easier. Just remember: You are not alone.

therethere

💖Hearts and Sparkles!💖
~Bunny~