Bunny at “Just Me and My Migraine” is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.
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: Don’t 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!💖
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.
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.
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,
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!💖
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!
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.
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…
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!💖
Do you want to share your story? Head over to the Contact Me page and send me a message with the following information:
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!)
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!💖
Yay! Another product review!
One of the worst symptoms encountered with migraine is nausea. Sure the vomiting bit that often comes with it is no picnic, either, but at least you feel better after the fact, ya?
We all have our methods for treating nausea. Anti-emetics are available with a prescription, or over-the-counter treatments like Nauzene tablets (there is a kids’ version in liquid form, too!) or Emetrol liquid (I, personally, prefer the latter of the pair) can be purchased anywhere that has a pharmacy section. These are basically sugar, stemming from days-old reliefs like allowing a spoonful of sugar (or a sugar cube) to dissolve on the tongue to relieve symptoms. Coca-cola was actually invented by a pharmacist as a medicine! But, since medications were taxed, it was eventually sold as a beverage only. (Here is an interesting history of Coke!) One to two tablespoons of Cola Syrup every fifteen minutes could alleviate nausea! If you don’t want to deal with the syrups, sipping at a warm (even flat) Coke can make you feel better. Ginger ale was my go-to ever since I was a kid. I remember suffering an attack at my grandmother’s house when my sister and I were too young to stay home alone while my dad was at work, and she would bring me a glass of ginger ale with a bendy straw to sip at. It always made me feel better. Nowadays, I don’t drink much soda outside of varieties of sparkling waters, but I will still find comfort in a ginger ale.
While I am on the subject of anti-emetics, I will list a few more consumables. Ginger tea or peppermint tea are great, too! My acupuncturist is very big on keeping the core warm when treating migraines. My sister favors peppermint candy (just make sure it has pure peppermint in it! No artificial flavorings!). Bare ginger is another great option! That one has a strong flavor, so it is not for everyone! It was too strong for me, but I cannot deny that I felt results. It also comes crystallized, which would be a little sweeter. Products aimed at expecting mothers are great, too! Preggie Pop, anyone? All-natural lemonade is yet another option.
But, what about people who can’t (or don’t) consume sugar? Or when traveling? Sometimes, the Emetrol runs out at the worst possible moment, or you don’t have access to hot water for tea. It happens. Sometimes, edible remedies just aren’t plausible.
That’s where acupressure comes in! The P6 point is located about three finger widths from the crease in the wrist. It is good for nausea, morning sickness, anxiety, and headaches (Yahtzee!)
Like with the Aculief, which activates the LI4 point, there are products out there for the P6!
I am starting to feel as though acupressure is like when Smart Phone were the New Big Thing. “You want to ________? There’s an app for that!”
There is just one tiny problem…
I hate wristbands. Like, the sweatband style popular among skateboarders. I have really never been a fan. They feel bulky to me, they chafe my skin when wet (my skin can be temperamental), and they get hot. I also have scrawny wrists, so if they stretch out…well, that’s it.
Enter Psi Bands! While I found them on Amazon, they are available at major chain stores (Target, Walgreens, CVS, etc.). They come in several colors, and are a adjustable band like a watch. The button that activates the pressure point is also adjustable with a little dial.
Aside from my migraines causing nausea, I also can get a little motion-sick on long car trips. Not so far as nausea, per se, but I’m not exactly comfortable! I have some cross-country flights coming up in a few weeks, and the longest flight I’ve been on was three hours, so I have no idea if a six-plus-hour flight will make a difference.
Needless to say, I couldn’t resist.
I purchased them on Amazon in the color “Cherry Blossom.” Not too long ago, I got hit with a killer attack and had the opportunity to give them a go.
I put them on per the included instructions, which were incredibly simple to follow, and lied down. I didn’t get more than uncomfortably queasy until I took them off to take a bath. In hindsight, I probably should have left them on! They are waterproof, after all. I am a dumb bunny. 🙄
They are super cute and not quite as recognizable as Sea Bands. I like how thin and lightweight they are, and they are simple to put on. It does take a little bit of finagling to get the fit just so, but the dial helps a ton for the fine tuning.
Honestly, I am glad I got them. Like with all holistic treatments, it is not a miracle cure. It aides symptoms of nausea, but it is not going to make you have the ability to dance a jig on the rooftops. However, a little less misery goes a long way when it comes to migraine pain.
🐰🐰🐰🐰🐰/🐰🐰🐰🐰🐰 I was prepared to just do 4, but they gained a bunny with their design.
I highly recommend Psi Bands to anyone who suffers with nausea, for whatever reason that may be.
💖Hearts and Sparkles!💖
❄️ Edit: I originally said the Sea Bands for Mom were lavender. My sister corrected me that they were baby pink. Whoops! She owns a pair because she wanted a more fun color than gray or black, and I really don’t blame her. Who cares if she isn’t a mom? Thanks, Juju!
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?!?
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!💖