Aside

Is Migraine Trendy Enough for you?

So, the “Migraine pose” is becoming a thing, thanks to MUA Nam Vo and Elle Beauty, and the Chronic Migraine community is (rightfully) BENT.

View my whole take on it on my Instagram.

👏🏻This.👏🏻Is.👏🏻Not.👏🏻Okay.👏🏻

And the people calling us out and telling us to “calm down” or to “live a little” are only adding to the stigma we have to encounter every day.

Please, don’t use my migraine to boost your ego.

💖Hearts and Sparkles!💖
~Bunny

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Aside

June is Migraine and Headache Awareness Month

Okay, I know it’s only May 4 (May the Fourth be with you, yadda yadda…), but I wanted to post about my plans for June.

I’m going to do a Social Media Challenge for MHAM. Sure, this one on puttingourheadstogether.com is from 2016, but it’s still valid! (The following image and the featured one are from that site)

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As for now, I’m going to rest off my current migraine…

Until next time…

💖Hearts and Sparkles!💖
~Bunny

Not Really Okay

I hate saying, “I’m okay,” even when I am…or when I think I am.

I try to be a “glass half full” sort, despite having every reason not to be. In every situation, I try to find a glimmer of a silver lining. Sometimes, it’s hard. Sometimes, it’s really hard, but it’s there, even when I have to make it up.

I’m between neurologists, due to a change in insurance pushing my out of the network of my last one. I got my referral in February (like, the first week of), and I get a call from a Neurology center, telling me to call them back to schedule an appointment, even though the earliest one they had was April.

Okay. Fine. It’s only been since November since my Botox. It’s already totally gone from my system, and I’ll have to essentially start again and not see results for the better part of nine months. What’s another two?

I call.

“We don’t have a referral for you.”

wait, what?

“I am literally returning your call where you said you got my referral and to call and schedule an appointment for April.”

“Who called you?”

“Umm…you did, ma’am.”

“No, it wasn’t me.”

(Aside: She has a distinctive tonality to her voice, not unlike yours truly does, and a thick accent…and she left her name on my voicemail. If it wasn’t the same person, she has a voice twin out there impersonating her.)

So, essentially, she called me a liar, and made me call my PCP back to resend the referral. I do them one better.

I physically go to my PCP’s office.

“What do you mean, they don’t have it, I am the one who sent it!”

How serendipitous to get to speak to the same receptionist who sent over my referral initially? Glass: half full.

She sends it again, and I watch her do it. She hands me a copy with time stamps as evidence.

I call back. Now, they don’t have openings until June.

Oh, and they still don’t have my referral and can’t even make an appointment until it is in their possession. Their office is nearly an hour from me, so it isn’t as though I can just pop over after work.

“I literally watched her send it to you.”

“Well, we don’t have it.”

🙄 …how is that my fault?

I have every intention of asking for a referral to a new new neurologist, because my migraines are back to uncontrollable and I need treatment, like, yesterday.

…whoa…pardon that rant. I strayed a bit off topic, didn’t I?

Sorry, and I know I’ve mentioned the neurologist thing before.

Good news: it appears that the pneumonia has finally run its course.

Back on track.

I hate saying, “I’m okay,” right now. Because I could be okay that moment, but then I won’t be mere hours later.

Then, I feel like a liar. Either I lied about being okay, or I am lying about being less okay. I’m honestly not sure which one. Both, maybe?

I can’t decide if I am ever actually okay, or if I’m jinxing myself by saying so.

I am literally becoming afraid to say that I am okay.

And that is not okay.

💖Hearts and Sparkles!💖
~Bunny

So Many Endless Cycles

What sucks about chronic pain conditions are the sheer amount of cycles you as a person are exposed to.

But we can’t talk about them. At least, no one wants us to talk about them.

Migraines cause insomnia, may it be in any of the stages of an attack. The insomnia either exacerbates the attack or triggers the next.

We miss work, and we get stressed about our finances. We get stressed about the strain we put on our loved ones. Stress exacerbates the attack or triggers the next.

Stress also causes insomnia. See above.

Insomnia and stress can cause anxiety and depression, which leads to more attacks, leading to more anxiety over finances and general depression.

I don’t know about you, but I get depressed from how much stress I cause others. That people worry about me all of the time.

Sometimes, it’s all I can do to not break down and cry.

But I don’t cry. I can’t. Crying exacerbates the attack or triggers the next. The tears form, those telltale gasping breaths begin…and I hold them back. Swallow them away.

However, fighting off the tears and sobs exacerbates the attack or triggers the next.

Notice the pattern?

I don’t like to be negative, despite what so many seem to want to believe about me. I don’t like feeling like some sort of useless invalid who does nothing except sleep and cause strain on her friends and family.

Sensing an oncoming attack nearly triggers a panic attack almost every time.

Look above concerning anxiety.

I feel like a failure more often than I feel like a success. My thoughts in times like these get dark, I feel like I am falling into a hole with walls so steep and slick that I will never be able to climb back out. I can’t help but wonder if people think I like being in pain or a general burden on the bulk of society.

I didn’t ask for this.

If I had to chose who should be stuck with this life (allowing that “no one” isn’t a viable answer), I would ask to take it on myself.

Because I wouldn’t wish this life on anyone… Even at my worst, I can’t be that cruel.

I wish I had the ability to at least keep it all to myself. The fact that it affects those I care about, may it be by causing worry or stress, is almost worse than the illness itself.

I want to break the cycle so much.

💖Hearts and Sparkles!💖
~Bunny~

EXCUSE ME?!

The context: A coworker thought it would be funny to play with a toy sword and *BONK* me on the head with it on Tuesday morning (playing around, not malicious. It wasn’t hard, but hard ENOUGH to trigger my head). Come Thursday, the spot still hurts something fierce, even worse than the initial hit. I see the company doctor. Yes, I reported the incident with the proper channels.

The doctor enters the room after I had finished my consultation with the RN beforehand, so he is aware of my situation. This is what happened:

Doctor: “So, I hear you have a headache.”

What I want to say: “No,Doc.I know headaches well. Intimately, in fact. I also know their cousin, Migraine, even better. This is not a headache. That’s like going to a doctor for kidney stones and having the doctor say, ‘So, I hear you have a stomachache.’”

What I really say: “I had a migraine, Sir, until it went away yesterday afternoon. Today, my skull hurts in the place where I was hit.”

I had to explain that a “headache was to your pulled quad as my pain was to your shin after running into the coffee table,” for my pain to be understood.

That’s how it always feels when a migraineur goes to a doctor who doesn’t specialize in headache disorders or migraine disease.

 

The Moral: Dont make flippant quips to people in pain/are sick. It invalidates their situation and is extremely condescending. And it isn’t funny.

 

💖Hearts and Sparkles!💖
~Bunny~

Chronic Illness and Conventions Part Four: Coping with Costumes

Click here for the rest of the “Chronic Illness and Conventions” posts.

Hello! Welcome to Part 4 of my Chronic Illness and Conventions series! This is one that I have been looking forward to writing because I wanted to include firsthand experiences from others in the cosplaying community! Unlike the other parts, this one is really specific to conventions and cosplaying, so I am not sure if it can be adapted to other situations. Maybe with a lot of imagination it can be done?

A big part of fandom conventions is cosplay, and it has only gotten bigger as years progress. Hats, wigs, costumes, armor, corsets…the sky is the limit in this nerd subculture. However, most (not all, but most) conventions take place over the summer. I live in Florida, so that can spell Disaster! Yes, that capital ‘D’ is deliberate. Even without accounting for weather, cosplay can be a challenge for someone living with any sort of chronic condition.

In regards to weather, costumes and wigs can get hot and when it’s 105º in the shade when you take the heat index into account (Really, though, I don’t care that the “real temperature” is 92ºF…just tell me what it is going to feel like!), things can go south in a hot second (pun intended).

My experiences are restricted to Chronic Migraine, but I know that anyone with a chronic condition (may it be pain or illness) is going to keep similar things in mind when constructing a costume.

For example, I have been known to forgo the perfect fabric for one that would be cooler for a Florida con in July. In another instance, it took me hours to get the “wings” of my wig for The Fight Card (from Cardcaptor Sakura) just right to prevent triggering my head.

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When It came to my “Fight Card” wig (usually dubbed “The Beast” by my friends), I took my time to make sure it was balanced perfectly. Mainly, it was due to wigs frequently triggering my migraines, but I also needed to perform in a fight show in this monster! As a result of my efforts, it is one of my most comfortable wigs! Go figure?

I have some costumes that I won’t wear period if I know it is going to be incredibly hot. Namely, my Elizabeth Swann (Pirates of the Caribbean) costume. It is upholstery fabric and very hot. Between that and the heavy wig (it is so thick!), I often get a heat-triggered migraine when wearing this. It is an incredibly heavy dress with several pieces of boning in the bodice, which aggravate a recurrent muscle spasm in my back. I have a love/hate relationship with this one…

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With my Elizabeth Swann costume, to avoid heat-triggered migraines, it is typically reserved for wear during the cooler months. Otherwise, it is only for short-term before I have to change.

I always have a backup costume planned for every event that I plan to cosplay for. I also bring extra clothes in the off chance that I am just not feeling up to cosplaying at all.

Sure, most of my issues concern wigs and headgear, but there are more things I usually consider. If I am in “migraine hangover” mode, and my costume planned is corseted, heavy, or restrictive (like with Elizabeth Swann, pictured above), I will change my plans. If I will need a headband, I plan accordingly (now that I have discovered fully adjustable headbands, that is not as much of an issue). I am also very picky about wig caps, and the only ones that don’t trigger me are the mesh open-ended caps. No nylon for me! Besides, the netting makes pinning the wig on that much easier!

Those are some examples of my experience living with Chronic Migraine. I reached out to cosplayers who are living with chronic conditions to give an example of how they cosplay with their illness or pain. Some just roll with it, others adapt. Please click on Continue Reading to see their accounts. Keep checking back, as I intend to add more anecdotes as I receive them!

Remember, cosplay means “costume play.” It is all about having fun! No one is better than anyone else. We are all adults dressing up on days aside from Halloween. It is really something not to be taken seriously. So, get your nerd on!

💖Hearts and Sparkles!💖

~Bunny~

Do you want to share your story? Head over to the Contact Me page and send me a message with the following information:

Cosplay Alias

Website/Cosplay FB Page

Chronic Illness or Condition (and source, if applicable)

A Link to a Photo of Your Costume (please include character and series!)

Your Story

Continue reading