Unless you’ve actually been in the same position and have had as
debilitating attacks as someone who experiences migraines, it’s hard to
truly understand the hardships they’ve been through and the battles they’ve
fought. Especially when it’s an invisible illness like migraines, it could
be hard to imagine the amount of pain a person is going through.
— Read on migrainebuddy.com/migraine/2019/5/10/how-do-i-help-someone-suffering-from-migraines
Enjoying Life
Busy Bunny!
Hello, friends! I apologize for my lack of activity here. In the theme park world, Halloween has officially begun, and that is the busy season where I work! I am pulling longer weeks than I probably should (but $$$!!), and I was even on a brief vacation (stay-cation?) last week.
I had a pretty nasty attack during said vacation. Yuck. That definitely put a damper on my energy level.
However, I got a photo with my favorite teddy bear, Lotso-huggin Bear!
🍓 This is what Happiness looks like. 🍓
I also finally saw Pandora and Toy Story Land, which was pretty cool. I rode Flight of Passage, which was equally cool and terrifying.
At any rate, I get to meet my new neurologist today! Finally! It only took 9 months to find one. Ugh.
Cross your fingers for me!
💖Hearts & Sparkles!💖
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!💖
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!💖
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.
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.
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…
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
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~
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.
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.
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.
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.
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.
Just Me and My Migraine 