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.

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. 

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, www.gretchenmrautman.com 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. 

Migraine Advocacy: May Blog Carnival

Follow the link to learn different ways that bloggers are advocating about migraines while still living a full life.

Creating awareness in a non-aggressive way

I "create awareness about migraine disease and headache disorders as a regular patient with a life full of other obligations" in a way that I had never anticipated. It's proven highly effective, however, and I'm pleased with the results, and the awareness that is raised is real, all without my really trying that hard.

But that sounds a little weird. I do try very hard to raise awareness about migraines. I just do so in an indirect way, as I've found out through experience that I can come off as a bit too intense if I come straight out and just aim all my energy on an individual (or even a group) all at once. Thus I've learned to take a more subtle approach to this issue of raising awareness

I have had the same migraine for over a decade now. I got a migraine in early September of 'o1, and it never went away. That was a while ago now. At first, I was ashamed of my pain and tried to hide it from everybody. I was tired of not being taken seriously because of my "over-exaggerating" how bad it was. So I became a silent witness to my pain. That didn't work out that great. The only place that I felt I could truly be myself, and raise to the top the amount of pain that I was in, was online.

Writing in my journal online was the best therapy I really had at the time. Then, on a migraine community, I started reading about people having "spoons". I didn't get it, until some saint linked me to Christine Miserandino's "Spoon Theory". It was awesome, and completely understandable. I linked it to my mother and sister, and we've been using "spoons" as a descriptor for the amount of wherewithal I have left to deal with the day ever since.

I have, over the years, linked many people, sufferers and "supporter"s alike, to the Spoon Theory. I've also paraphrased it in talking to people in real life. Sometimes, I'll grab a handful of spoons, just as Christine did, and explain the Theory.

In March of this year, I finally did something I really wanted to do for a long time; I got my very own spoon, tattooed on the side of my head, right behind my right ear, where I can touch it as a totem and a source of knowledge that I will always have just one more spoon. As I tend to wear my hair in a ponytail, the tattoo is visible and it's raised some questions as to its meaning.

(freshly done)

I was asked if I was planning on getting a fork and knife next. Cute question, and I was able, as the questioner in this case suffers from chronic pain, to point them to the Spoon Theory, and help them understand, not only my pain, but theirs as well in a different way. She felt relieved to know that she wasn't weak or anything like that to have fewer "spoons" some days than others.

So, my creating awareness hasn't been limited to migraine or headaches, it's been to create awareness about one's own limitations, and that it's ok to have such a limitation.

Who am I?

Who are you without your disease? What makes you more than just your disease? How have you adapted these aspects of your life so they're not completely overcome by your illnesses?

Oddly enough, it is because of my disease that I am who I am today. And I'm OK with that, as I like who I am, and what I am: a blind friend.  I do not judge people on their appearance, race, creed, or breeding. Rather, I accept all people with open arms. I don't know what baggage they must carry, just as they don't know, initially, what I carry. 

Some people are shocked at the diversity of my friends, on different points of all the spectrum. They don't understand how I can see all of them as a friend, and relate to them, when they're so completely different. But I don't see the differences, I see the similarities. They're all hardworking, good people who are trying their best, in their own ways, to make it. 

If a person becomes my good friend, I will go to the mattresses for them when they need it. I will stay up late, get up early, or just be there in the day for them when they need me. I also know, however, that sometimes what people need is space, and I respect that as well. I know that I need some space, to deal with my personal demons (and migraines), but there's a standing invite.

In 1st grade, I was basically the only kid in my class who would talk to one of the girls, simply because she was going blind. Maybe it scared them? All I know remember is that when I was (randomly) assigned to sit next to her, and we were supposed to be learning our colors, and she was already color blind. So I would help her find the right colored crayon so she could color in the petals of the flower we were working on. I talked to her, treated her as my equal from the beginning, and as a result, we became best friends. That was awesome.

So even when my migraines were just beginning to get serious, I already had the ability to treat all people as equals, and look for their good qualities, not superficial traits, or the baggage that they were forced to carry, as that was how I wanted to be treated.

Quantum in me fuit,

Gretchen

Surgery and the Road to Recovery

I checked into the hospital at 6am. I had preregistered over the phone the day before, so that was quick, and I was whisked away to preOp. I had brought a CD to be played while I was in surgery, and everybody was cool with that. The anesthesiologist came in and went over everything for about the 12th time. But better safe than sorry. I remembered being wheeled into the OR, and as they said "time to go to sleep," I muttered, "Night, night."

Next thing I knew I was coughing. I was waking up ~4 hours later. I was in Recovery, and a nurse came over and, with a suction stick, got the oozing blood (I'd just had surgery on my mouth after all) out of my mouth. I couldn't open my jaws, which made coughing hard, but I did it pretty well. Apparently why I felt like I had such trouble breathing was Dr J had shortened my turbinates, the bones in the nose, as apparently mine were unusually large, and I would be able to breathe better long term if he operated on those as well.

After about 2 hours (they tell me) of being in Recovery, the nurse taught me how to use the suction stick on my own, and I got to go up to my room. There, I stayed the night with my mom acting as my advocate, until she crashed on a cot they brought in. I had to stay awake, although I dozed a lot, because I needed the suction stick.

There was a bit of a snafu with getting my ordinary, everyday pills into me, as my mouth was severely banded shut. As a result, as soon as they could, basically, I was discharged to Dr J's office. There he cut some of the bands, and taught me how to take off the front band, which allowed me to open my jaws just enough to slip a single pill through.

That taken care of, I went home and slept.

I was was on a clear liquid diet for the next 4 days. A clear liquid diet, for me, consisted mostly of broth, liquid Jell-O, and water. It got old, really, really quickly. I was allowed coffee, thank goodness, but without any milk or creamer.

I basically slept for the Clear Liquid period, my body was just using every available spoon to try and heal. And I was letting it.

On Valentine's Day, I went back for my Post Op appointment. Dr J loosened my back bands, and told me I could start taking all of my bands off for 1 hour, 3x a day. I nodded and was grateful, because he also said that I was looking very good. I had very little swelling, thanks to the ice packs I'd had strapped to my face for the past 5 days, but still, I was doing very well.

Dr J also said I could go to a Full Liquid diet. That meant anything that could be "blenderized and sent through a strainer".  YAY! I went home and celebrated with a glass of milk. High living, let me tell you. The full liquid diet's much easier to follow.

The taking the bands off, less so. To begin with, I had to figure out how to get them off. I knew I was using a pair of tweezers, but the side ones, which form a square, proved difficult. Finally, I figured it out, and ow... soreness! I managed to survive the hour, with moving my very stiff jaw so that the muscles would strengthen in their new location. Then I took a quarter of an hour to put the blasted bands back on the right way.

As I heal, Dr J will give me longer periods to be out of the bands, until I'm out of them more than I'm in. That'll take around 3 months. But for now I'm taking the bands off three times a day, and that's enough.


Gretchen

My surgery explained

If you follow this blog, you'll remember that I've talked about the surgery I was going to have on the 9th.  (Feel free to go remind yourself... it's the above link.)  

Well, they did indeed take lots of molds, and several X-rays during my second PreOp appointment. It was rather mind numbing, as I didn't really do anything except bite into wax, have plaster molds made, X-rays taken. So I'm going to gloss over that appointment, and go to my final PreOp:

Dr J had taken my X-rays and my mold, and performed a mock surgery on the molds. I was able to take some pictures of what they were going to do to my actual jaws, but the images just don't make that much sense without somebody pointing to each spot. That, and I was getting overwhelmed.

Basically, Dr J was going to shift the back of my upper jaw down, opening up my airway more than it's ever been. Then he was going to splice my lower jaw, and bring it forward. In this process, he'd also bring my chin bone forward 7 mm, which is practically impossible. Usually at lengths much above 5mm, they start using implants and leave the bone alone, but Dr Jones wanted the best long term result for me, so, after discussing it, I agreed that he should move the bone of the chin.

After discussing all this, we went into a different room to have him take some "Before" pictures, and there were some plastic skulls on the table. I found one that was similar to what Dr J had described as how he was going to affix the bone.

This isn't exactly what my skull now looks like, of course, but it's the general idea. 

Next time: What happened after the surgery.

Gretchen

Vanity (and Survival) In a World of Pain

I have a friend who has really been dealt a bad hand when it comes to being healthy. She's got all kinds of health issues. She and I get along really well, and Skype each other often. Sadly, she lives in Canada, so we can't get together very often. That whole couple thousand miles apart bit gets in the way.

But anyway, fall of last year, she got an episode/pain flare that was a record breaker in terms of length. At the same time, I was getting horrible pain spikes that would last for weeks on end as well. Most of our Skype conversations from that period were either gripe sessions or else grand pauses of silence while we writhed privately in our own pain, all the while claiming that the other had it worse.

Then, one day when I called her, she looked healthier than she had in a couple of months. I commented on it, and congratulated her for the break of her episode. To my surprise, she laughed weakly and told me that the pain was actually worse than it had been the last time we talked. But she looked healthy/er! When I looked thoroughly confused, she explained that she was wearing makeup.

This just confused me even more, until she explained: the foundation made her look less waxy, the eye shadow, which she'd learned how to apply correctly several books in the library, and a colored lip gloss gave her color that she otherwise wouldn't have.

This intrigued me to no end, because she really did look quasi-normal, but from her voice I could tell that the pain was bad. In addition, I'd noticed that I'd started giving away when I was in a lot of pain, myself, by my coloring. I'm naturally pale, being Scandinavian, and then also never going out in the sun. So pale wasn't unusual for me, but I too was getting the kinda glazed-over/dead look from the migraines. So my friend took pity on me, and gave me her secret.

There was a website she sent me to where some of the beauty supplies (I had none except some mascara) were just $1, and the really high quality were $3/each. So I spent maybe $15, and got some high quality brushes, and, because of a sale that the site was fortuitously having, a huge eye shadow pallet for next to nothing.

After I got the package, my friend walked me through how to apply the make up, from how to use the right brush for foundation, how to brush it on, and how to blend it, to everything eye. I also got a tube of vivid almost-red lip gloss at her recommendation. I grasped the basics quickly, and began to try to improve my technique on my own time, when we weren't Skypeing.

Soon, I noticed that I could, indeed, look healthier than I felt. I really liked this because I've always hated showing how much pain I'm in. I don't want people to know, but I was losing the "mask" I'd been able to wear, and the makeup gave me a mask back. But that wasn't it:

When I was wearing makeup, I actually started to embody the phrase my 2nd grade teacher had drilled into us regarding preforming: "Fake it til you make it." The makeup actually made me feel a little better.

It didn't lower my pain levels, no, although that would have been awesome. But it did improve what I guess you could call my quality of life. I would be minding my own business, and glance up and see me in a mirror or something, and I'd see somebody who looked "healthy", and, at some level, I managed to fake my brain into believing it. My functionality improved slightly, and on days that I was wearing makeup, I'd be able to sit up longer for dinner, go out to a doctor's appointment and talk coherently about what was wrong, make a quick trip to the library, etc., all because of some eyeliner and lip gloss, which sure is easier on my body than adding more medications.

So, what started out as an almost vanity trip, trying to fake the world into believing that we weren't dead with pain, has turned into something so much more for the two of us. People on the street treat us differently, more like equals and less like inferiors made out of glass, when we spend the spoons to put on makeup in the morning. Thus it's not, as some inferred in the beginning, vanity that motivates us, but rather a need to survive and a desire to not be perceived as "broken", or a personification of a disease, but rather just a fellow human.

So I have this to say about the cost of my "vanity":

brushes = ~$20

make up pallet = ~$15

lip gloss = $5                        

being treated as an equal = Priceless

Quantum in me fuit,


~Gretchen