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~

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Rebounding…

I have discussed Rebound Headache/Medication Overuse Headache (MOH) on here more than once. I would not be surprised if I mention it again in the future.

For those of you who don’t feel like reading previous entries, let me sum up:

A Rebound Headache is a phenomenon that occurs in people with headache disorders where the medications (OTC or prescription) they use to fight their symptoms ends up causing more headaches. It’s the worst cycle EVER, and a B***H to break.

According to my research, it is something that only effects people with headache disorders. If you, say, have chronic back pain, taking your aspirin or whatever won’t create more back pain. If you don’t have any sort of headache disorders, you probably won’t ever encounter MOH.

❄️Side Note: I prefer the OTHER version of MOH…Maid of Honor!❄️

At any rate, here is my current situation: About two weeks ago, I got whacked on the noggin. I won’t go into details, because it’s incredibly annoying when I recount them, but it caused many an issue for me. I was taking Tylenol with no results, Aleve with no results, Advil with…see the pattern?

Then, the migraine demon reared it’s ugly head again. I treated it accordingly. Being the fluff-brain I am, I never took into consideration that I was treating a head injury at the same time as the migraines.

Whoops.

Well, here comes Halloween, the busiest day of the year at my place of work, and I had a double shift (about 11.3 hours). I woke up feeling lousy. I suspected a reaction to something I had eaten the day before was messing with my stomach, but I did not have a headache at that point, so Yay! By noon…I had a headache. However, I was assigned the podium position to check people into their appointments, so that helped. A lot, actually. I made it through the shift and home, but by then, I did the “migraine shuffle” into my room. I ate a banana, took some meds, and hoped for the best, because I had another long day the next day (it would have been another double, but I traded the day before, thank every higher power out there…and the coworker who traded with me).

Morning comes, and the migraine is still there. I do my usual routine and take things one step at a time. Long story short, I called in. I even resorted to Demerol. I hate Demerol. Narcotics in general. Hate. Them.

Pain ebbs, so I take it easy.

A few hours pass, and the migraine comes back in full force and then some.

Oh, snap…

I knew what that meant.

I was in REBOUND.

I literally use every weapon in my arsenal to relieve the pain to nothing working. I even took myself to the ER for an IV, and that did nothing for the pain after about 20 minutes of something vaguely resembling relief. If I slept, I woke up in worse pain than when I started.

It is Saturday, and I haven’t worked since Tuesday. I am off Sunday and Monday.

I am still in pain. Although, now, it is maybe at a 6/10 rather than the 10/10 from before. Progress is progress.

My mom put it best, “It’s like when an alcoholic is trying to quit. You just want to have one more drink and it will make it better.”

I just wanted to take one Aleve to make it better. I knew, however, that it would not do me any favors. Maybe a few minutes of relief, maybe hours. But, it would come back. I would cry, shake, sweat…I am literally withdrawing from OTC medications, as well as Imitrex. I can barely move, and my energy comes in spurts (one of which I am utilizing to type this entry for you). It’s awful, and so frustrating. Even my lemon and sea salt potion did nothing. I have never put much thought to it, but having my extra throw blankets in the linen closet in my bathroom was a blessing in disguise when I was too nauseous after a bath to leave the bathroom. At the risk of TMI, I have never been so disappointed to not become physically ill. It was so close…but nothing happened. I just sat there, literally crying, sweating, and drooling, saying to myself, “Please…you will feel so much better…please…” Nothing.

I am very grateful for my Philips Hue light. The Northern Lights effect I can access through the Ambee app is so relaxing.

I have been rotating ice packs in and out of the freezer, and keeping a wet washcloth on my head the rest of the time. My Migraine Kit is literally on my bed. I am drinking Cherry Juice, using all-natural sleep aids, and brewing tea like it is going out of style (namely Pukka’s Tumeric Glow and Revitalize blends, as well as Twining’s Pure Peppermint and Traditional Medicinals’s Chamomile with Lavender brewed together). I also have lots of water handy, and a box of miniature candy canes (since Publix was out of Starlight mints). Food has been simple, bananas, applesauce (with cinnamon for it’s anti-inflammatory qualities), dried cranberries infused with cherry juice (cherries are also natural pain relievers!), and almond milk-based yogurt (almonds are like cherries on the pain relief spectrum). I also have microwave soup (salt helps relieve headache pain), and nibbled on some chipotle corn chips (spicy foods also help relieve pain). I am breaking so many FODMAP rules, but I will deal with that later. My head takes precedence over my gut right now (once the pain is gone, everything will fall back into place).

It’s been rough, but I am feeling a difference. I have my fingers crossed that, by Tuesday, I will be back to myself again.

Here’s hoping…

💖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~

My Migraines and Weather: An Epic Battle

If I had a nickel for every time someone asked me, “Why do you live in Florida if you get migraines from heat, humidity, and thunderstorms?” I would be able to retire. I always answer in a similar fashion, as can be seen in a earlier post:

“I also get migraines during a dry, December evening in Massachusetts. What’s your point?”

I have had many people wonder aloud if I were to move to a drier climate, I would have fewer migraines. I won’t lie, I have been curious myself. I have also been skeptical, as it gets pretty darn dry in Massachusetts during the winter, but maybe it was the cold that triggered me all of those times?

Well, I wouldn’t know unless I checked it out, right?

In my recent product review for MigraineX, I mentioned that I had the opportunity to see just how a drier (re: desert) climate would affect my head. My older sister currently lives about a half-hour outside of Phoenix, Arizona. My mom and I wanted to visit her, and swing over to Anaheim, California for a trip to Disneyland. Two places I have never been, and they all have (they being my mom, sister, and brother-in-law). The farthest west I have ever been has been Altus, Oklahoma over a decade ago. I don’t recall having any big migraine attacks back then, but I know the flights did me in a bit. Where is Altus, you may wonder? Drive to the middle of nowhere, Oklahoma, and make a left at the tumbleweeds. When the prairie dogs are telling you to turn back, keep going, and it will be on the end by the Walmart. (No offense to anyone reading who may be from Altus…I just grew up in Massachusetts and Florida, and I am NOT suited for anything less populated than a suburb…I saw a tumbleweed and cried. Literally. I wish I was kidding.)

So, Phoenix. Beautiful area, actually. Very…muted. Unsaturated, as far as colors go, but there is a beauty in it. Huge cacti grow alongside some of the most ethereal looking trees I have ever seen, and the only spots of color (that were neither in the tan or muted green ranges) being from hearty desert flowers like firecracker plants. Even the buildings were tan. At first, I thought I was going to hate it, but there was an odd charm about it. Very tranquil.

The original trip was supposed to be from early Wednesday morning to late Sunday night (MCO to MCO), but thanks to Hurricane Irma, that was pushed to late Tuesday night, instead. In that time, we also visited California, which is an area notorious for perfect weather 99% of the time. I had three migraines, with two being rather intense. One of those was in California, and two were in Arizona.

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Little baby cactus in Glendale, AZ! It was about the size of a basketball! Most yards in Arizona are gravel, AstroTurf, or a combination of both. Not all, but most.

Honestly, I cannot say I am surprised at my getting attacks while there. One was definitely sun/heat related, while I am 99% sure another was hormonal. The third was, I am guessing, my body’s way of saying it is smarter than me.

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This is the look of a girl who is doing everything in her power to not let on that she feels like she is dying, while rocking her Genie Disneybound.

Okay, fine. I concede that.

I am also not counting the travel-induced migraine I got on the way home. That was mostly my fault for being a fluff-brain and putting on headphones over my pressure-balancing earplugs before reach 32,000 feet. Whoops. Then the plane took forever on the tarmac and Mom and I had to practically run across the whole terminal in Detroit to get to our connecting flight. What does overexertion cause?

Altogether, everyone! MIGRAINES!

The moral of this story is that it doesn’t matter where I go, migraines will probably follow me. I just have to do what Tim Gunn says and,

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At least I went. Honestly, when it comes to my head, I dread any sort of travel. I just have to do it. I need to stop being afraid of my head and just roll with it. There is a big world out there, and I cannot spend my life hiding from it!

I wish to see the world!

💖Hearts and Sparkles!💖
~Bunny~

Product Review: MigraineX

Hello, everyone! I know it has been a while since I have posted, but things have been a little crazy! Halloween season is upon us, so I am working like crazy, and I spent nearly a week in Arizona (with a side trip to California for DISNEYLAND!!) right after Labor Day.

What happened here in Florida where I live that same weekend? Hurricane-freaking-Irma. It hit my area Sunday night, when I was supposed to return home. So everything went squirrelly and we (my mom and I) came home Tuesday night. Luckily, I live far enough inland to not have been hit with the worst of it. We came home to power and minimal property damage (other buildings in my apartment complex more than my own). We got lucky! I count my blessings.

I did get to test a few things during the trip, though. Firstly: how will my body react to the weather conditions in the Southwest US (that will be it’s own post!), and secondly: I got to try out my MigraineX earplugs on the plane!

I bought these back when I got my Aculief clip, Psi-Bands, and gel eye-mask. The earplugs come with an app that I will review first.

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Continue reading

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

You Said it, Chronic Illness Cat!

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Seriously, though, if you have a chronic illness and have not experienced “Chronic Illness Cat,” click the photo. Because if you can’t laugh at life, is it really worth living?

The wonders of that blog aside (it’s one of the gems of tumblr), the circular logic, or lack thereof, of the text in the photo is all-too-real for those of us with Chronic Illness. We are either lying or exaggerating. There has to be a way for us to meet in the middle. Some device that we can use to simulate what we feel on someone who is healthy.

It is frustrating beyond belief to never be taken seriously. Well, “never” is a strong term. There are people in my life who do take my word for things, but I am one of the lucky ones who has a strong support group. There are some people out there who feel isolated by their illness, by their pain.

There are many opinion pieces out there about how people with chronic issues, especially women, are not even taken seriously by their doctors! Women are emotional, they tend to blow things out of proportion.

One would think that centuries of surviving childbirth would have given women a pretty high threshold for pain by default. Not that I have experienced that particular miracle of life personally, but I know that I have a high tolerance for pain. I also know how it feels to be told that my migraines are “just headaches.”

Excuse me, but no.

We know our bodies, faults and all, better than anyone else.

Take us for our words.

💖Hearts and Sparkles!💖
~Bunny~