// Day 2: X-Men: Migraine & Headache Disorders Super Heroes//

Who in your life goes above the call of duty and how?

There are a few people who are really outstanding when it comes to my migraines, but there’s one that always stands out:

My mom: My mother has suffered from migraines for a vast majority of her life. As a result she is incredibly understanding and compassionate when I have a migraine. She lives in daily pain. I have some kind of pain on a daily basis, but my mother has a full on migraine more often than not. She is always understanding and pushes me to keep on working and functioning despite pain. She is supportive of my decisions to try more holistic treatments instead of taking more prescription medication. Having that kind of support makes a difficult journey much easier.

June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

// Day 1: Phantom of the Opera//

What do you hide behind your Migraine/Headache Disorders mask? What do you let people see?

When I have a migraine, I try my best to not let people see how much pain I’m in exactly. I wear sunglasses and I just try to keep myself occupied.

I try to hide any kind of weakness that I’m feeling due to a migraine. As we all know, there’s a pretty sharp stigma attached to having a migraine. Not only do some people state that it’s “just a headache” and that we should be able to function properly, but many don’t even try to understand the complicated layers of symptoms that we experience.

What do I let people see? Well, that depends on the person.

I might let them see that my eyes look tired and that I just need to sit.

I might let them see that I wince without sunglasses on or jump at small noises.

Or I might not let them see any of that.

I feel like the mask changes and adapts based on who is around.

June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of FightingHeadacheDisorders.com.

// Hello world!!//

So I’ve been MIA for awhile, but I promise I have a good reason.

I’m up at camp, and it’s not the easiest of things to get time to sit down and blog. Especially because you can only get wifi in certain places! I’m able to get it in my room in the staff cabin, but I’m barely in there.

In any case, I’ve been having a blast at camp. I started to lose my voice and put myself on self imposed vocal rest for a day. It made a world of difference. My voice isn’t 100% back, but it’s pretty darn close.

Tomorrow I start another leg of my journey. I’m driving down to Pittsburgh again (three weekends in a row! - BT over Memorial Day Weekend, Picked up Daniel from the airport LAST weekend, and now…) to drop Alex off at the Greyhound station, and then meet up with my friend Jeff to go with him to his cousin’s wedding.

Then tomorrow night I’ll drive over to Johnstown and stay with my friends Nick & Stacey. Then to Harrisburg for Bill & Amy’s wedding… (Which reminds me… I still need to get a card!). After their ceremony, I’ll be heading home and then catching a train into the city, as my Musical Theatre Intensive in NYC starts on Monday morning! I’m really excited for this and can’t wait to get started!

So far at camp, I’ve only had one debilitating migraine. My head hurts at some point everyday, but not enough to knock me out. On Wednesday though, I was down for the count for a few hours. Between the pain and my medication, I ended up crawling back into bed for a few hours after pricing in the gift shop proved too taxing for me.

Later that day, the migraine waned enough that I was able to join the living. Though I did keep my sunglasses on for almost the whole day.

I’m thankful to have a boss and friends who understand my migraine situation and are concerned about my health. It makes everything much easier here.

I do have to work on my hydration though. I’m fairly certain that it contributed to that migraine on Wednesday. I’ve been carrying my Nalgene filled with either water or Gatorade all the time, but I’m not always as diligent about being hydrated as I should be.

I’ve got my bottle filled up with Gatorade now though, and have the aim of finishing two bottles of Gatorade or water today. At least. And that’ll be my goal everyday for the rest of the summer.

It’s just about time for breakfast, so I have some time after that where I can finally start catching up on those migraine prompts that I’ve been missing out on!

Hope you’re all well!

// 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 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!

// 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?

// I’m going to get bloodwork done this morning.//

I have a really bad needle phobia and had trouble sleeping last night because I was worked up about it.

So whenever they’re like “Ready?” I just want to say:

Bloodwork is the worst for me because my veins suck as well. Time for some self hypnosis and deep breathing.

It also doesn’t help that my neck hurts and I woke up with a semi-headache.

Ugh. Let’s get this over with.