// Auras.//

So as I’ve mentioned before, I occasionally get auras before my migraines.

When I do experience an aura, it’s usually accompanied by what I’ve described as a Flash Migraine (see this post). But the more I read about auras, the more I realize how incredibly highly individualized even this rare part of a migraine attack is.

If you look “migraine aura” up on Google images, you’ll get lots of results showing a jagged semi-circle in what is presumably someone’s field of vision. In some cases it is bright and multicolored, and in others it is iridescent. This has never been a part of my aura (at least so far… or that I can clearly remember).

My auras seem to be characterized by a few things:

• Auditory disturbances: I have had a slight hearing loss in my left ear since birth, presumably as a result of being born in distress. Therefore, it is common that every once in awhile, the hearing in that ear becomes dampened. However, I don’t use any kind of assistive listening devices. When I experience aura, a few things happen in the realm of hearing. I tend to experience tinnitus, which is especially awful because of the sound sensitivity that comes along with a migraine. A sound I can’t escape from? Fantastic. Also, besides the tinnitus, things start to sound metallic. I know that this isn’t really a succinct explanation, but I can’t think of any other word to use. All sounds just start to have a metallic tinge to them.
• Visual disturbances: I do experience some visual disturbances, but they aren’t a jagged line across my vision, nor are they characterized by losing half of my field of vision. Instead, I start to experience a form of tunnel vision. The outer reaches of my vision start to become blurred, and my peripheral vision becomes almost non-existent because of it. I wear contacts on a daily basis, so it feels almost as if my contacts have stopped working at the corners of my vision.
• Balance disturbances: This could be interconnected with the hearing thing, but my balance is much less than steady when I’m experiencing aura. Everything seems a bit skewed, so I have a bit more trouble than usual getting my footing (and I’m a pretty clumsy person when I’m offstage to begin with…)
• Confusion: During this period, I cannot multitask like I usually do. In order to get a task done, I have to give it my full concentration. And it usually involves a very concerted effort. And I’m one of those people who likes to multitask as much as possible. I’m the queen of divided attention. (I actually had a friend tell me that when a professor told his class that “multitasking and divided attention are a myth” he actually laughed out loud, and in response to a look from the professor he said, “It’s just… You’ve never met my friend Rachel.”) During aura though, it takes time for me to move from one task to the next. This is not something I like at all.
• Movement issues: I know that I mentioned balance issues before, but when I have an aura I also start to feel, well, discombobulated. My limbs don’t always seem to move how I want them to, and I sometimes feel like my body is changing. I’m no longer fully confident of the area my body occupies in space and find that I’m prone to taking too big a step on that last stair or trying to lean against a door frame that isn’t quite as close as I think it is.
• Nausea: Yes, nausea is a part of my aura. It tends to signal the transition phase to me, when I will move into experiencing pain. Nausea is usually the first sign though.

As I’ve mentioned before, when I experience an aura, my migraine pain seems to be more intense. I don’t know the reason for this - but then again, do any of us really know the reasons behind most of our migraine issues?

Do any of you share any of these characteristics of your auras? I’d love to hear about how you experience aura, if that is a part of your migraine process. Like I said, I’ve only been experiencing occasional aura for a few years (and was diagnosed with chronic migraine at the age of 13… I’m now 24.)

I’d love to hear about how others experience this phenomena!

I went to bed last night with the assistance of some medication for my headache… And an ice pack.

I woke up around 6:30AM, and switched out my icepack. But I didn’t take any more medication because I knew that I had work at 10AM.

So here I am, sipping on a cup of coffee, still feeling awful, but ready to go to work (It take me about 5 minutes to get there…)

I only have two days of work left, so I figured that I should go in for them. If by the end of the day at work I’m still feeling awful, I’ll tell them I’m not coming in tomorrow.

For now, ibuprofen and coffee and hydration will (hopefully) have to suffice.

There’s a storm a few days away, so I’m wondering if that has anything to do with this pain. If not, I’ve got some phantom migraine brewing in my skull.

// Day 30 - Recap//

// Day 29 - Congratulations!//

We all know Health Activists are awesome. Share three things you love about yourself, things you’re great at, or just want to share. Don’t undercut or signpost!

1. I can decorate cakes (and other similar baked goods) quite well. This is something I discovered on my older sister, Jo’s 30th birthday. She decided that she wanted an R2-D2 cake. My mom had the Wilton pan and was like, “Johannah, I am NOT going to decorate that cake for you.” And I said, “I will. Why not try?” Turns out, I wasn’t too bad at it. Since then I’ve made most of the cakes for my nieces & nephews birthdays - some using shaped cakes:
   
   Some freehand:
   Some cake pops:
   When I’m decorating, it’s a therapeutic thing. I can concentrate on one thing, and don’t have to worry about anything else going on because I’m so fixated on getting things just right on the cake. Next up? Making cake pops for my niece’s First Holy Confession on May 12th! :)
2. I’m really good with kids. I have 5 nieces, 2 nephews (with another on the way!) and have been called on to babysit many times. Besides this, I am a counselor at my diocesan summer camp, so I’m working with kids all the time. And I guess the word “kids” is too restrictive, because in all honesty I like working with “youth”. At camp, I’m a counselor in the older cabins, so I work with kids age 15-18. But then again, I’m the head counselor, so I deal with all age groups. I’m also the National Sr. advisor to our Jr. youth group, and went to an Orthodox Youth Worker’s Conference down in Texas in January. I like working with kids in this context. I can keep my nieces & nephews occupied for hours, but I can also have a conversation with a 17 year old girl who is contemplating her future. I think that it’s a talent and a gift from God, and I try not to take it for granted.
3. I’m smart. Okay, this is something that for a long time, I never wanted to say to people. I was a big nerd growing up, and have never gotten anything lower than a B+ in my life. My intelligence was never something that I wore on my sleeve, because I found that when I said that I didn’t have to study as hard or that I was able to figure out a more complex article, other people weren’t too keen on hanging out with me. But now, I say, screw it. I’m smart. I graduated from college Magna Cum Laude, in high school, I graduated 8th out of 1,072 students. (AND sang the National Anthem). I love reading, I love learning, I love fun facts and tidbits, and being the best that I can be in the world of academia. And that doesn’t make me less of a fun person to be around. And I’m not showing off, it’s just that sometimes I don’t know where the line is for other people’s knowledge base. I’ve (thankfully) gotten to the point in my life where my other friends are either brainy like me, or appreciate and like the random knowledge that I have in my head.

Be proud of yourself today! What are some things that you’re good at?

// Day 28 - Must Follow!//

Create a must follow list for your community on a single social network. Share your top 5-10 tweeters, blogs, or Facebook pages.

I have to agree with Emily in this post over at That M Word today.

When it comes to health activist blogs, twitters, or Facebook pages, I think we’re all looking for something different. Some of us are looking for support, some for straight up researched information, some of us want advice about how to treat migraines.

Making a “what kind of people to avoid” list would be much easier, but I think that Emily really hit the nail on the head with her list.

If I had to give you at least one place to check into periodically, it would definitely be Migraine.com. This website offers a bit of everything. There’s scientific evidence, advice, opinions, personal stories, expert opinions and so much more. If you need somewhere to start, Migraine.com is definitely a place I’d recommend.

Even if you can’t find exactly what you’re looking for on the first try, you can probably get in touch with someone who can help you.

I think that it’s an invaluable resource for all migraineurs!

// Today was going so well…//

After one of my hometown friends was drafted into the NFL earlier today, I was ecstatic!

AND I had tickets to see Thoroughly Modern Millie with my mom at Papermill Playhouse!

So great, right?

And it was.

My mom wasn’t feeling so great, so she wasn’t sure if she was going to come, but she really wanted to see this show, so she came.

When the woman who put on way too much perfume sat down next to her, I offered to trade seats. Not only does my mother get migraines, but she’s also asthmatic, so it would have been much worse for her to sit next to this woman.

I thought, okay, this isn’t awful. Know what my brain said?

So midway through Act 1, the scent was still lingering and was as strong as ever. At that point, I could tell that I would be getting a headache. Unfortunately, I couldn’t really take anything because I had to drive home. So I dabbed on some peppermint oil (which I always have with me) and continued on with the show.

This leads me to the question of why someone would put on such an overwhelming amount of perfume if you know you’re going to a theatre and will be seated in close proximity to countless other people.

I mean, I can understand wanting to put on a dab of perfume. That’s fine. As a migraineur, that may bother me more than most, and as an asthmatic, it may have irritated my mother anyway. However, this was a LOT of perfume. My mother could still smell it two seats over.

I just think that it’s a little inconsiderate to bathe yourself in a scent that may not be appealing to all people, especially when you know that you’re going to be sitting next to (probably) a complete stranger for upwards of two hours.

At least the show was fantastic!

And I turned on my phone to find out that another friend (the first friend’s half brother) wasn’t drafted, BUT he was signed after the fact!

So congrats to Khaseem & Ray! :)

// Day 27 - Titles//

If you wrote a book about your life, your community, your condition, or your health activism - What would you name it? Come up with 5 working titles.

• Confessions and Cocktails: This is a name I’ve had in my back pocket for a long time. My dad is an Orthodox Priest, and one of the greatest sacraments in the Orthodox Christian church is the sacrament of Confession. This title came about because I was musing about how at ACRY (our diocesan youth/everybody group - There’s a Sr. & Jr. division) on Saturday evenings, the schedule would always list that Confessions were available. The next thing on the schedule was always Cocktail hour for the dinner that night. I just found it funny and thought it would be a catchy title for some kind of memoir. And hey, now I have my funny baptismal certificate story to add…
• Coffee, please. Hold the MSG. I’m sitting here drinking a cup of coffee, and this one came to me, because it calls out two of my “triggers”. Well, MSG is a trigger for me, coffee is a livesaver. Having caffeine can really make the difference in my headache, and make it more bearable.
• Sorry. We don’t have the funding for that. This title could apply to many different areas of my life. First off, it can apply to the headache and migraine community. We are constantly underfunded for research because people don’t see migraines are the life threatening condition they are. This would also be applicable to my life growing up in an urban area where they’d put new turf on the football field before increasing the budget for any arts programs. Actually, let’s just cut some arts programs instead, okay?
• The Eight Dwarf Who Lived in My Head. The seven dwarves work in a mine. They have pick axes. When I have a migraine, it can feel very much like there’s a man behind my eye with a pick-axe. I guess I was going for a play off of the fairy tale here. Maybe I’d write some of it in a fairy tale-esque fashion and then break through that style with some sarcasm and dry wit. Or maybe the princess would just get wise. How about that? A change in the fairy tale where she learns there’s an 8th dwarf, and he lives in her head, thinking it’s a mine. Weirdest inspiration ever, but I like weird.
• At Least I Didn’t Give You Glaucoma. This would be another option for some kind of a memoir. Or a chapter within a memoir. As I stated in an earlier post, this is something that my mother likes to remind me of whenever I have a migraine or a kidney stone attack.

What would be some working titles for books about your life, community, health activism, or condition?