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~

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

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I Started Getting Botox at 30

When my neurologist told me that I was a candidate for Botox, I was very much against it. At the time, I was only in my late twenties, and I look about 18 or so. Why would I want to do Botox?

Sheesh, was I ever naive.

Eventually, when I was still getting a lot of migraines and headache days, even after noticing a difference with my vitamin therapy and acupuncture. So, I said, “Sure, why not?” I called my insurance, got some information, and made my first appointment.

The day came and I was nervous. It is not as though I don’t like shots (I can take them or leave them, honestly, and I do get acupuncture regularly), but I am not a fan of the unknown factor of it. Some shots hurt, others burn, and others cause a lingering pain that only gets worse over the next few days (helloooo, flu shot!). Here I was, injecting a ruddy ☛ toxin ☚ into my head, neck, and shoulders!

☠️ Toxin [tok-sin] n. any poison produced by an organism, characterized by antigenicity in certain animals and high molecular weight, and including the bacterial toxins that are the causative agents of tetanus, diphtheria, etc., and such plant and animal toxins as ricin and snake venom. ☠️

And I was doing this willingly and knowingly?

What was wrong with me?!

Was I crazy?!?

No.

I was desperate.

You see, a sufferer of Chronic Migraine does not qualify for Botox treatment unless they have tried and failed three different preventative treatments.

I was at FIVE.

The office nurse takes me into the usual exam room, with its big wooden desk, low black shelves filled with magazines, brochures, and information about anything and everything neurological and decorated with little potted plants. I sat in my usual chair, and she took my blood pressure and temperature, as usual. I was starting to feel more at ease, everything was going as usual, and the normalcy was calming. I signed the release forms, read through the papers she gave me with the rules. Things like, “No strenuous exercise,” “No massage,” etc. Essentially, let the poison sink in. 🙄

The neuro comes in and we chat, I update her on my attacks, she goes over all of the papers I was given with me, we shoot the breeze. I lie down on the exam table and she does the first few shots into my forehead. Okay. I’ve had mosquito bites hurt more. I turn my head and get more around each of my ears. I won’t lie, that hurt. There is no muscle to cushion the shots, just scalp and skull. Ouch I move to a chair, and I got them at the nape of my neck, down each side of my neck, and each shoulder. No big deal.

With that, I was done and sent on my way. Man, did my head feel weird. Not being able to move my eyebrows was the strangest sensation I have ever experienced!

Over the next few hours, the tension started. I was warned about this. You inject the Botox into certain areas, the rest of the muscles think they have to pick up the slack. If it got too unbearable, I was told to take some naproxen or ibuprofen to take care of it.

This repeated every three months from then on out. I have only had one negative experience where I had a rare side effect. I get most of my migraines on the right side, so my current neuro put a little extra on that side (common practice), but it messed with the muscles that support my eye, and I had trouble focusing on things for about three weeks until things settled. I have overlapping vision already because the prescription for my astigmatism is odd and between levels. Since the muscles were weak from the Botox, my eye couldn’t hold position long enough to get proper focus.

However, it did get better! He doesn’t put extra near my eyes, anymore. I still go every three months. It sucks when the appointments get delayed, though, because if you go too long, it is like starting over, when you have to wait three treatments before seeing the results again.

A perk (aside from the obvious effect it can have on migraines) is that you won’t sweat as much in the areas you get the shots! Believe it or not, but Botox is often used to treat excessive sweating! A whole host of other things, too! It is not just a cosmetic procedure, anymore!

So, yeah, if your neurologist recommends Botox to you, give it a try! Most insurances cover it, and there are discount programs, so don’t be afraid of it! The worst thing that will happen is that you try it for three treatments (nine months), don’t see results, and stop. In that case, you are no worse off than when you started!

At least you tried, right?

(I almost said, “At least you gave it a shot,” but I refrained. You’re welcome!)

💖Hearts and Sparkles!💖
~Bunny~

Link

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~

Chronic Illness and Conventions, Part Three: Location, Location, Location

Conventions of all genres (fandom-based or otherwise) are usually held in one of two types of locations: hotels or convention centers. Just like with everything, exceptions exist (I have attended cons on college campuses and heard of others being held on state fairgrounds!), but you will generally encounter them in one of those two locales.

As with the content of Parts 1 (here) and 2 (here), the advice in these posts can be applied to any environment where there will be crowds, or when you are on vacation, or simply away from home for the day.

Let’s start with the more common of the pair: hotels. Most large hotel chains will have convention or conference space with a multitude of purposes, with cons only being one of them. This is a great source of income for hotels, since conferences, weddings, et cetera often come with people who will want the convenience of staying on site. This all accounts to something called attrition that can be a regular thorn in the side of someone renting the space…but that is a whole different topic for a whole different type of blog!

I honestly prefer hotel-based conventions, especially if I am staying in the hosting venue. If I have an attack, I can take a break in my room away from the hustle and bustle of the con (in the case of Omni, where I am usually working, I have a few people who can cover me for a short spell in the event that my attack gets so bad I have to lie down). If I am not staying in the venue, I can usually find a relatively calm corner out of the way to recover.

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The Vendors Room at Omni [Fandom] Expo in 2015, taken early in the day on Saturday. Small cons are great if you prefer to avoid large crowds.

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