Wednesday, June 13, 2012

"You're Beautiful" - (Day 13)

Dear Gretchen,

I know that this is sometimes difficult to believe, but you're an awesome person. You're a strong person, and deserve recognition for it. Yes, the Migraine makes you physically weak sometimes, but your spirit is strong, and that's what really matters.

You've accomplished so much in your 24 years. You've written My Secret, and taken it from a free form rant to a book that's helping kids who are now in a situation similar to what you were. You've gotten thank you notes, and you know then that you've touched a life for the better. And isn't that what you've wanted to do all your life?

People trust you, both with secrets and for honest opinions. Never lying has its benefits, but you also know when to just stay quiet. You're a very loyal friend, as you know. Once a friend is made, you will go to the mattresses for them, even if it goes against common sentiment.

Migraines have made you a more sympathetic, non-judging person, who has the compassion to go to your limits to help others.

So pat yourself on the back; migraines have made you a better person,


Tuesday, June 12, 2012

"Let's Do The Monster Mash!" - (Day 12)

I've thought long and hard about what movie monster would represent my migraines, and I have a real handicap in that I don't watch a lot of monster movies. Whoops. I did however come up with and answer: the movie Frogs.

In Frogs, it's nature that is the "enemy" of the majority of characters. The innocent are spared, but all those who are guilty of not living well with nature come to a bad end. This is not dissimilar to my own story. It's nature, and my genes, that are acting against me, giving me Migraine. It crept up inconspicuously and then, the status mirgranous suddenly attacked, just like in the final  scene with Jason Crockett. It's just so overwhelming, when something that seems so innocuous, frogs, "headaches", whatever, suddenly rear turn against you.

Even the use of chemicals/pollution is mimicked in my life, as I now get rebound migraines from acetaminophen, aspirin, and ibuprofen because of how often I took them when I was a kid. I made my own fate then, just as Crockett sealed his with the pollution all around. 

I hear the croaks of my migraine frogs at all times, just like in the movie. Still, I hold out hope that I can get off the island.

Monday, June 11, 2012

"Say What!?" - (Day 11)

The most ridiculous thing ever said to me was said something so categorically stupid, and under bizarre enough circumstances, that I'm going to protect their identity.

"Dogberry" and I were at a free range dog park with their two dogs. There happened to be another lady there with her dog, and the other lady and I started chatting. After chatting about our respective dogs and general conversations, the lady asked (since I was obviously of that age) if I was going to school.

I told her freely that no, I wasn't. I was disabled with Migraine. Dogberry who had been on the edge of the conversation, suddenly stood up and left, leaving the lady to talk with me as I explained that I was (then) trying to publish My Secret, and all of the other stuff that I was doing to occupy my productive moments.

Shortly thereafter, Dogberry reappeared with both their dogs on leashes, and said it was time for us to leave. So I said goodbye to the lady, and left. We went back to Dogberry's house and each started to read our respective books in companionable silence. Then, out of the blue, Dogberry asked me if I was embarrassed at saying that I was disabled.


I just kinda stared at them for a moment and then finally dragged my jaw off the floor and answer, "No, why would I be?"

Well, it turns out that the reason that Dogberry abruptly left the conversation with the lady at the dog park was because they were embarrassed that I was disabled and not in school to the point that they had to leave the area. They didn't know that I had gone on to explain what I *was* doing.

To this day, I'm still gobstopped as to why I ought to be embarrassed because I'm disabled. It's not like I did anything to get them. My migraines are genetic, and, short of picking different grandparents, there's not much I could do to avoid them. I avoid my food triggers as best that I can, take my meds, and generally be a good patient as to taking care of myself. So what's there to be embarrassed about?

But apparently Dogberry, who's known me all my life, had plans for me different than what came about. And I feel sorry for them that they feel that  being disabled is something to be embarrassed over. 

Sunday, June 10, 2012

Name the Spokesperson - (Day 10)

Today's blog prompt is as follows: "Choose any celebrity to represent Migraine (whether they have Migraine or not) who would it be and why?"

I'm not going to.

I don't think that Migraine needs to have a celebrity to represent Migraine, especially one who has never suffered from them. That just doesn't make sense to me. Instead, I think that we need more actual sufferers to stand up and make their voice be heard. We the migranures need to be our own adovcates, as hard as that can be. 

It really needs to be the actual, plain, average, everyday, ordinary people who need to speak from the heart and tell the truth as it is for them.No two migraine sufferers are the same, as our brain chemistry and wiring are all just slightly different. Therefore, we all have a separate voice and set of experiences. We need more events such as this month's blog challenge to happen on a larger scale, such that we can hammer home to the "healthy" world just exactly what kind of life we have to live when it comes to dealing with Migraine. 

So celebrity talking head? I'll skip and give you a world of Migraine heads instead.

Saturday, June 9, 2012

"Day Dream Believer" - (Day 9)

This is so awesomely ironic. The below was today's Non-Sequitur comic strip:

I didn't day dream in class, though. I payed strict attention to my teachers, even if they were boring. This was because I was the "perfect" student. I took notes, did my homework early, and turned everything in on time. I loved school. I went into a major funk when I was forced to withdraw during my junior year of high school because my migraines were getting so bad I was missing more school days than I was making. I went into a huge depressive funk, and school's still a sore spot for me, 7 years later. Yes, I got my GED, but I didn't get to walk. 

I can't go to college now because I'm still to unpredictable when it comes to my health and migraines getting in the way of my meeting deadlines. It really rubs me raw, so for my perfect day without a migraine, I think I would go to a full day of classes at the University. 

First would be some kind of class on music, maybe Music Appreciation 150, where I would finally learn to tell the Baroque from Classic from Romantic periods of music. I played the violin for 10 years, and never really did learn the difference. 

Next would be Constructive Writing, where we would be learning editing skill that I could later apply to my manuscript from 2009's NaNoWriMo novel. 

I'm not sure what would come next. Maybe I'd do some schoolwork or studying in the SUB before heading to the duck pond to read for my Comparative Religions class. 

And since I wouldn't have migraines holding me back, come evening I'd go to my PE class where we'd either be in the swimming pool doing laps, or else doing archery, a sport I really enjoyed before my migraines got bad.

Then I'd come home and just relax and do a bit of studying after having a yummy dinner or ramen noodles, something that I wouldn't be able to eat otherwise.

It may not be glamorous, but being able to be a student again, if only for a day, would be a (day) dream come true. 

After lunch, I'd 

Friday, June 8, 2012

"Let There Be Light" - (Day 8)

The sun is evil in that it is bright, and I'm photosensitive because of my status migranous. I actually have an anecdote about photosensitivity and how to cope.

When I first developed status migranous, I really didn't know how to cope. The sun was so painful. Heck, a dark room was too bright. I would wear sunglasses even after dark (much to my mom's distress) because the house lights were too bright. I had to use a sleep mask because the street lamp at the corner of our street distressed me. It was bad.

Finally, one day at my neurologist appointment, I was curled up in the fetal position on the examination table, and my neurologist said, "I'm seeing a lot of pain like behavior."

This got me mad. After a crying fit in the car while still in the parking lot, I reviewed what Dr. B had said, mostly the part about my not being allowed to wear sunglasses inside at all. This was because if my eyes acclimated to the level of darkness while wearing my sunglasses inside, then I had no way to protect myself from the even brighter outside. I was shooting myself in the foot.

Over the next couple of months, I realized that if we got the Reveal, blueish light bulbs, they didn't hurt my eyes as much as the Bright White light bulbs did. So after changing all the light bulbs in the house, Mom was finally allowed to have the lights on again, and I didn't wear my sunglasses inside.

So now we can have lights on, although I still prefer a more twilight kind of glare than full sun, but at least it no longer sends me into a huge spike of pain.

The moral: watch when you wear your sunglasses if you want to protect yourself in the long run.

Thursday, June 7, 2012

List Topper (Day 7)

I think the biggest myth/misconception about Migraine for me is that I can get "healthy", or be cured. This is tied to the misconception that Migraine can be cured like other diseases. Migraine, for me at least, is a condition that I'll live with for the rest of my life. 

It's not that I don't want to be healthy, it's just that, for me, it's not a realistic goal. If I understand my doctors correctly, my brain has rewired itself so that pain is the status quo. 

The best way to combat this misconception of curability is to teach them, one at a time, that instead of focusing on the negative, we have learned to re-frame the question so we are applauding our achievements, however small they might seem. The no-pain norm no longer applies. 

The norm for me is pain, and that needs to be accepted. However, there are things that I have done today, things I have enjoyed today, and it is those things that need to be acknowledged as achievements. 

Wednesday, June 6, 2012

Name that Tune! (Day 6)

The song that I would choose as a theme song for my life with Migraine is R.E.M's It's the End Of The World.

I find the video particularly morbid, but perhaps that's OK because of why I chose the song to begin with, as there's a story that goes along with the song.

I was in 5th grade, and Mom and I were driving home from my very first visit to my pediatric neurologist, and this song came on the radio. Mom got really mad for a reason I didn't get, and she demanded that I change the radio station to the classical station. Fine, whatever... but I'd never heard Mom talk like that.

Many years later, when the song came on the radio again, Mom confessed the reason that she had lost it that day was two fold:

The first reason was the chorus (and title) of the song: "it's the end of the world as we know it". Well, her young daughter was ill enough that she required a specialist to treat her.

The second reason was the real reason Mom had such a hard time with the chorus. Apparently as we were crossing from the parking garage to the hospital, we passed a mother and kid who were leaving. The kid was about my age, and was bald from chemotherapy. This was while a brain tumor was still on the table as a diagnosis, or at least something that needed to be ruled out.

So Mom was scared for me, as she actually understood all that could go wrong, and then that song came on the radio. So I say she's totally allowed to have a small freak out over hearing that saying broadcast at her over and over again.

The part I find slightly ironic is she missed the final lyric of the song:  ...and I feel fine.

Tuesday, June 5, 2012

Do That To Me One More Time (Day 5)

The comfort measure that I've found that works the best, and I go back to, time and time again is getting a therapeutic massage. It really works wonders. I have a massage therapist whom I've been seeing for... 8(?) years now. She can read my body like a book, and knows how to give me a massage that will be the most helpful for my pain. Before I get on the table, she'll ask me how my week has been, and she really is interested because how much pain I've been in, and what kind of migraines I've been having will impact how she works my muscles. It's an incredible feeling, when I'm on the table and am suddenly aware of the rest of my body as my muscles relax as they're worked on.

The following is a stream of consciousness that I wrote for my personal blog one Friday evening after my massage:

There is Pain. That means, that, to such an extent that there can be, there must be No-Pain. This idea is frankly rather foreign to me these days. But as I was laying on the massage table this evening, feeling the Pain in my muscles be worked away, I realized that that the idea of No-Pain is real. After all, what had been in Pain no longer was. Thus the term No-Pain came to strike me. 

I spent the rest of the session vacillating between this foreign concept of No-Pain, with analysis, to just a state of becoming intensely aware of the Pain in my head. But the sensory glory that is No-Pain would come back, and I'd wallow in the comfort of my right shoulder being worked on. (Now that I mention the No-Pain in my right shoulder, I naturally feel Pain there, but such is the way of things...)

It's been over 10 years since No-Pain was possible for me, and longer still since it could be the norm (if indeed it ever was). The Pain that came with migraines has never felt foreign to me. No more so than the Pain in my lower back earlier this evening when I first lay on the table, with my muscles as tight as they were. 

Pain simply is. 

But, while Pain is real for me, that must, I thought, mean that No-Pain is real for others. You have no idea how relieving a thought that that is. 

Recently, I think, I've become so burdened down with my own Pain, I've come to perceive Pain as the state that Is for all, and that's not good. Not that No-Pain should be assumed to be the state that Is, because that too would be false.

If only, I thought, there could be a mixture of Pain and No-Pain in everyone, to an extent where there is only sensation, such as I was experiencing on the table. I don't wish for anybody a lack of any sensation, that would be disastrous. That's something else entirely. But, if there could be a state of sensation, of awareness that was neither of Pain or No-Pain, I would imagine that that must be the physical feeling of Buddhist Enlightenment.

On that massage table, there will be Pain. There can be No-Pain. But so too can there my body just be. My nerves receive and give signals, but without judgement, without verdict, condemnation or commendation. The muscles relax and peace comes to my body.

The next question is how do I lay my mind upon the table? Is such a thing even possible? To simply be... is that even possible?

And with that thought, Pain returns, taking the place of No-Pain. Or maybe not, maybe it was simply sensation in its purest, most refined form. I don't know, nor does it matter. But now I am aware of No-Pain in a way that I haven't been for a while. 

It gives me something about which to think.

Monday, June 4, 2012

June's Bustin' Out All Over! (Day 4)

The best tip I have for my fellow migraine sufferers on how to still enjoy summer despite their migraines is to plan their day well and pay attention to the weather forecast. Summer means that el nino is on its way, and that can mean drastic changes in the barometric pressure, sometimes several times in one day. This can wreck havoc with my migraines. So having an idea about whether or not it's going to storm means not only not going to the zoo in the rain, but saving yourself from having a migraine rain on your parade.

Heat is a huge trigger for me. That means that I tend to do outside things as early in the morning as possible. This usually means that I'm usually done with outdoors work (gardening and the like) by ~11am when it starts to get really warm. Staying hydrated is very important as well, as dehydration can cause headaches on its own. Gatorade or other sports drinks are good, but I've also learned recently that coconut water can be a great rehydrator with electrolytes, but then again, there's always good ol' fashioned... WATER.

Hats and sunglasses are even more important in the summer, although I always wear sunglasses outside, as the sun is harsher on my phototsensitive eyes. Be aware that some of the newer sunscreens add perfume/scents to their lotion to make it more pleasant to put on, but the smell of some of those lotions can be a trigger for me, or even for those around me who can smell it.

And, above all, take some time to RELAX and just be. We live in a very high stress world, and it's nice to just check out and get a vacation from the hassles of everyday life, no matter how long or short. Treat yourself well, and your body will treat you well in return. 

Sunday, June 3, 2012

Just Shoot Me Now (Day 3)

I once read a quote that stuck:
"There's nothing that cannot trigger a migraine." 
So relax and take life as it comes.

Life is a trigger for me, it would seem. I've had migraines all my life, and they've gotten progressively worse over the years. So maybe I ought to say that time is my biggest trigger. And it's very hard to avoid the passage of time, as my time machine is broken currently. Now that I've laid the foundation of my migraine triggers, I'll share some of the slightly more avoidable ones.

1) Stress is a very common trigger of my migraines. Well, actually, that's not quite true. It's about a 50/50 shot on whether or not a very stressful situation will induce a migraine for me. Sometimes I'll collapse into a puddle of pain when my stress gets above a certain level (say a 7/10) of severity. However, it's not always the case that a 7/10 stressful event will trigger a spike. 
For the most stressful situations, when there's a true crisis of some kind, my pain will actually recede, taking a backseat, so to say, until the uber stressful situation is completely over. Only then, when it's completely safe, and everybody else is taking a sigh of relief, I fall apart at the seams and end up in the fetal position for who knows how long as the migraine pain that receded returns with the stress induced migraine on top. 

2) Foods are another big trigger of mine. Chocolate, MSG, and tyramine are the three biggest food triggers for me. People are often unaware of tyramine migrianes as it is naturally occurring in foods, and therefore doesn't show up on the list of ingredients on packages of food. 
I know it's tiresome, frustrating, and generally a pain in the rear to do, but keeping a food diary of everything that goes into your mouth is tried-and-true method of discovering food allergies/triggers. 

3) Sleep can also make the pain worse, instead of better. I've found that I need 9.5 - 12 hours of sleep per a 24 hour period to stay optimal, pain-wise. If I get much less than 8, I'll get a sleep deprivation migraine. However, if I sleep for more than 12 hours on any given day, I've found that I wake up (eventually) with a killer migraine. I once slept 16 hours straight, and was then in bed for close to a week with the sleep-rebound migraine. 

4) Painkillers are my last major trigger. This might sound weird, but it's true. I get rebound migraines from aspirin, ibuprofen, and acetaminophen because I took way too much of them when I was younger without knowing that I was shooting my future self in the foot. I now only can take the OTC painkiller naproxen, and only then in very limited amounts. 
My neurologist, who was the one who discovered that I was getting rebound migraines has given me the rule of thumb that I take any painkiller only up to 3 days per week. The same goes for my abortive medications, 3 days max, as, if I take them more often, I run the risk of developing a rebound migraine from that medication as well. 

But yeah, life is the biggest trigger of all, and I've accepted and learned to live with it.

Saturday, June 2, 2012

My Embarrassing Migraine Moment

I've had migraines for as long as I can remember; and Mom and I hypothesize that I've had then since birth. That means that I've had plenty of embarrassing moments  However, there's one that sticks out in my memory.

My status migranous hit me during my 8th grade year. They (the migraines) continued to progress through the years. Come my sophomore year, I was passing out up to 10 times a day (because of the pain) during a bad pain spike. I'd regain consciousness quickly, within a second or so, but it would take a while before I could function at even minimum capacity again.

One day, during a not-so-hot day, I was in that really awkward place of not being in bad enough pain to stay home, but in enough pain that I wasn't going to get much in the way of learning done that day. Still, I'd missed enough school with the bad migraine days that I really couldn't afford to miss more school, so I went. I survived 1st period: Orchestra. After all, I'd been playing for 9 years already and could do a lot of the stuff we were practicing on auto-pilot. So that was good. However, then came English.

Mrs. A ruled Honors English with an iron fist. She was probably the strictest teacher I've ever had, including conductors, so that says something. Well, Mrs. A was in a bad mood that day to begin with, before we even started the period; not good. Then, to add fuel to the flame, our class was rather apathetic that day, and not really fully engaged in the lesson.

Mrs. A would have none of that. She told the class that if we were as asleep as we seemed, then maybe jumping jacks would wake us up. Thus the entire class was forced to do I forget how many jumping jacks. I asked for a reprieve, as I had the pretty-bad migraine, and got The Look from her. So I forced myself to try and do jumping jacks with the rest of class, as instructed.

Well, I think that I managed 3 jumping jacks before I passed out cold on the floor.

I was told later by one of my classmates that Mrs A didn't notice that I'd passed out and was flat on the floor until the rest of the class stopped doing the ordered jumping jacks and were just standing there staring at unconscious me. The really sad part of that was that I was in the front row.

Once Mrs A did notice, she basically yelled at me for passing out during the jumping jacks exercise, and then kicked me out of class and sent me to the nurse's office by myself where I went and curled up in a ball on the farthest cot from the door.

So not only did I end up passing out in English that day, but from then on, Mrs A treated me like I was some kind of spun glass figurine or something. For a kid trying to fit in as much as possible, she sure did make me stick out like a sore thumb for the rest of the year.

It was not only horribly embarrassing, it was also very frustrating for me, as it was so typical. Migraine is an invisible disease, and thus I look healthy as can be, even when I'm  at a 9.5/10 on the pain scale. And since I looked healthy, Mrs A didn't listen to a reasonable request to accommodate my need to stay sitting down that day. It was only after she got a visual aid (my unconscious body on the floor of her classroom) that she took me seriously.

I shouldn't have to pass out cold, throw up repeatedly like a friend of mine, or anything else for our disease to be acknowledged. There needs to be a concerted effort to raise awareness that we suffer from a disease, not just a headache. The general public need to understand the difference, and it, sadly, often takes drastic action to get the message across. 

June is Migraine Awareness Month, and I encourage all of you to just take moment and remember that a headache is a symptom, and Migraine a syndrome. If you can learn the distinction between the two, and maybe educate just one person, together, we can make the world a more accommodating place for those who suffer with this debilitating disease.

Two for Tea (Day 2)

If I were able to invite any person with whom to have tea and truly get them to understand Migraine, I would not choose somebody famous or who I know personally. There are enough talking heads out there already. Instead, I would like to have tea (chai,  please) with the faceless parent of a child suffering with Migraine. This is because I've been on the Other Side, as the suffering child.

I'd want to help the parent understand what their child is going through. It's scary to be a chronic kid, and having an invisible condition such as migraine is even harder, because there's nothing to "prove" that there's something wrong. I thought pain was the standard in life, because I've had migraine all my life. However, for the parent to see their child suffering is hard. I understand that the parent wants to help their child; this is practically a given, but what is not a given is how best to help said child.

The onus lies on the child to be their own advocate, with increasing responsibility as they grow up. The parent can hold the chronic kid's hand, but in the end, only the child can be responsible, as they are truly the only one who knows exactly what is happening with their body. Charting from an early age is important. For the very little kid, they could mark each good day with a sticker, but remember to give the child  a different sticker as an award for surviving a bad day as well.

I would strongly urge the parent to keep a sharp eye on the painkillers that their child takes, and how often. I unfortunately believed that as long as I only took the recommended doses of OTC painkillers, I was fine. Well, I wasn't. I developed rebound migraines to acetaminophen, aspirin, and ibuprofen, as I now get migraines from them.  My mom was unaware how much I was taking, and I didn't know that I was doing anything bad, just treating the pain as it came. And now I can't take any of the three.

Another very important thing that the parent and child equally need to take to heart is that the migraines are not their fault. Migraine is a disease, and while it can be treated, and occasionally outgrown, they have done nothing wrong. It's just a fact of life.

Therefore the chronic kid and  parent need to work as a team to treat the pain, and deal with the frustration, fear, and uncertainty that the migraine pain brings. 

Friday, June 1, 2012

My First, on the First

There is no definite first migraine for me. Migraines have been a part of my entire life. However, I'm going to share with you two separate times, one accounted by my nursery school teacher, and the second as the first time I truly remember being in pain in the Migraine way. 

The following account was written on my "Your Stories" wall on my children's book's website, by my first nursery school "teacher":

I was Gretchen's first teacher when she came to me as a ten month old baby. I remember that she cried a lot during her first few weeks. I didn't know then that she might have been in pain, but I was the only one who could calm her down. I took out a box, and let her crawl into it. I would get on the floor, and run my fingers through her beautiful blonde hair which would soothe her, and then I would hold her and sing to her. After two or three weeks of doing this routine, when she would enter the room, she would go into her box or under the cribs, and when she was ready, would crawl out and play with the other children but would always crawl into my lap when we would gather to sing. Music calmed this baby's soul...she is still very precious to me. I will love her always. And only wish I could hold her, run my fingers through her hair, and sing to her to ease her pain.

I know that to this day, music calms me down when the pain is bad, and I fall asleep to soft music every night, as I find that it helps me wake up a little better than I might otherwise. 


The second account I'll give you is from my own memory, although I don't remember a life without pain, so it's probably a mixed memory:

I would have been three or four years old. It was recess/outdoor time. I liked outdoor time, because I got to go look at bugs and play in the sandbox. But the time that sticks out in my memory was one day that I felt terrible. I didn't want to go outside to the playground. I didn't want to play with my friends. I didn't even want to sit on the steps and wait Outside time out. I didn't want to stay in the classroom. Instead, I hid in the little space underneath the stairs leading to the second level of the building. 

I hid in there, curled up in the fetal position, crying softly. I was good at crying quietly. My teachers couldn't get  me to come out from under the stairs. I just ignored them and curled into a tighter ball. I hurt, and I didn't want to do anything except hide from everything, including myself.

My teachers were concerned when I refused to come out. I know that they sent at least one of my friends to try and tempt me out, but I wouldn't budge. I was safe under the stairs and I was NOT moving. Finally, after who-knows how long, my teachers gave up on trying to extricate me, and just walked by every once in a while. Finally I came out on my own volition, but I didn't want to play with my friends, I just lay quietly on a mat and read books.

That day after preschool was over, I went upstairs to where my mom's office was, and crawled under her desk and drew pictures in "angry" colors, mostly red and black, with sharp angles, and boxish shapes. Some of it was just random scribbles, while pushing so hard with the crayon that I would break them into several pieces. 

All I remember is that I hurt and knew that there was nothing anybody could really do about it. Yes, Mom's presence helped me calm down and feel safer, but the pain was still there.