My Scariest Migraine

My scariest migraine ever happened not that long ago, on September 25. I know because I wrote a short entry about it in my journal the next day:

Sept. 26, 2012 - I lost the ability to control my body. Even tho I was aware of sounds around me, and I could identify them, I could show no response or act in any way physical. 

So that's the short version. Here's the slightly longer, more descriptive version of what happened leading up to and on that day.

9/24/12 at 3:08 pm - Still really not-putting-it-together in the brain department. If I were Juli, I'd say I was having "chemo brain", but that's not possible. So I guess it's just good ol' Migraine Brain and I'm getting so g-ddamm used to the pain that I don't notice it the way that I used to. That scares me. The extra caffeine isn't helping, and might actually be making me worse, so I don't know what to do.

The migraine spike started in full force during the latter half of the afternoon of Sept. 24th, 2012. I'd been feeling slightly "off" for the second half of the 22nd, and all of the 23rd and 24th, which, after the pain hit, I realized had been a prodromal like I'd never experienced before. Usually, if I notice the lead-up to the pain spike, it's minutes before the occurrence, not days. 

So, when I was body slammed with this level 9/10 pain spike, there was nothing I could do but take the pain medicine I'm only allowed to take in drastic circumstances and curl up on the couch in the fetal position and cry.

9/24/12 at 7:42pm: start dissociating at table. Mom get and give. About 4 hours between doses. 

Then the day of the actual Scariest Migraine arrived.

9/25/12 at 7:05 am: already starting to get the cold shakes & dissociation.

9/25/12 at 2:22 pm: I lasted 7 hours, but need more [pain meds]

That's the end of the journal entries that I was able to post, chronicling what was happening, because I lost my ability to function completely. 

I remember, as I started to dissociate from my body, that I needed to get help. So I called my doctor, who said she'd call me back with instructions as to what to do (IE what medications I could still take to try and make things not get worse) as soon as she finished with her current patient. OK, fine. 

I then closed my eyes and tried not to cry from the pain.

My consciousness at this point was so completely overwhelmed with pain that had I been lucid, I would have finally called it a 10/10 migraine. That's something that I've never done before because I've always said, "It could have been worse." So, having had enough of the pain, my body/consciousness connection was severed. The severance of the connection was so complete that, as far as I was concerned there was no body. There was pain, and there was Gretchen. But there was no vessel for the pain, simply all encompassing pain. 

I heard my cell phone ringing with the ringtone that told me that my doctor was returning my SOS call.
I knew that I had to answer the phone to get help.
The phone, I consciously knew, was already in my hand. 

I couldn't answer it. I had no control over the body that was holding the phone. Instead, the body just lay there on the couch, useless. My consciousness heard the ringing end, and then the beep of a voicemail being received. But I couldn't do anything. I was trapped in the very essence of pain.

I prayed that my doctor, who knew how close I was to dissociating, and that I was home alone, would call 911 and they could come and get my body to work again. 

Instead, and I don't know how long it was later, Mom arrived home. I could here her come into the den where I was curled up on the couch. I could hear her say my name quietly. I wanted to cry. I wanted to ask for help. I wanted my body back, even if it meant more pain. Instead, for the next two and a half hours, my body lay there while my consciousness tried to force it and my body to join; to work again. 

I could hear my mom and my grandfather watching TV and talking in the other room, but I couldn't call or cry out and ask for help. There was no voice to cry with. Only pain and helplessness.

I was so scared for those two and a half hours. I didn't know what was going on except I hurt and nothing was working. I didn't know how or if I could fix it. If I could go back. I wondered if I'd lost my mind. I didn't know if that would be a good or bad thing at this point.

Finally, I somehow gathered all the strength that I could and  SHOVED with every bit of fear based adrenalin focus I had, forcing my consciousness to merge with my body. And it worked. 

I screamed as every nerve in my body came back online. It was almost as bad as the sea of migraine pain  in which I had been suspended for the past several hours. Mom came running in, and, slowly, she helped in integrate my mind and body again.

*****************

After this, the migraine slowly dissipated until it was down to a manageable  8/10. I was able to talk to my doctor later that night, and then the next day in an emergency appointment.

The thing that scares me the most is, other than the pain, we don't know what caused it; we don't really know how I came back, and we don't know if or when it will happen again.

Depression and Migraine

October is Depression Awareness Month. This had escaped my notice in past years, and I feel kind of guilty about that. After all, depression and migraine have a high co-morbidity rate. This is only natural for a couple of reasons:

1: There are different kinds of depression. I myself have had a few of them. The first that I had was Depression Secondary to Migraine. IE the pain from the migraine, and the migraine lifestyle were making me clinically depressed on their own. This is an incredibly common kind of depression for migraneurs. After all, there is very little skittles and beer about the kind of pain some of us have to deal with all the time. 

2: In a different approach to understanding the co-morbidity, let's look at chemistry. One prevailing theme of research among migraine researchers and treatments is that migraine is caused by a chemical imbalance of certain chemicals in the brain. This causes the brain to misfire, basically, and create the symptoms of pain, even though there is no external stimulation of nerves. So what does this have to do with depression? Depression is caused by a chemical imbalance in the brain. Migraine sufferers are often put on an anti-depressant or other anti-psychotic medicine as a way of controlling the migraine. The fact that our depression that is more situational is also effect positively is just basically a bonus.

So, if you take nothing else away from this, know that the migraine related depression all in our heads... literally. It's the chemicals that are messed up, not our psyches. 

We are not weak.

We are not "sad" and just need to "cheer up".

We are victims of two different diseases:

Depression and Migraine

Venting About Migraines In a Different Way

"How do you vent your frustrations about living with migraine disease in a way that's helpful to your healing, both emotionally and physically?"

I used to not vent about my migraines at all. For some reason, growing up, I decided to held the Spartan ideal of not showing any pian the best. I was so in awe of the story of the Boy and the Fox, of the little sick boy in The 12th Easter Bunny, who nevver cried or complained and thus got a beautiful Easter egg. So I held everything inside. I didn't cry (much), and I just internalized all my pain.

Then I started getting sick...er. Cracks started appearing in my shield, and finally, I had a HUGE meltdown. It was ugly, but I came out a different kind of sufferer.

I'm not saying that i now kvetch about my migraines all the time. If anything, I've started to steer away from the really active migraine and chronic pain communities and BBS's. But this isn't because I'm avoiding the reality of my migraine pain.

Instead, I've accepted it.

I know that that sounds really odd, but it's true. I no longer fight the idea of having a migraine. I haven't "given in". Instead, I accept it as as given, and now work on figuring out how to deal with the fact of pain in my life. There's a huge difference between giving up and acceptance. I didn't understand that before, but now I'm very much aware of it, and try to accept my migraine pain, while not getting overwhelmed with the enormity of it.

I still need to vent on occasion. I'll write rants or raving posts in my personal journal sometimes. I'll cry, a good, cathartic cry until I get the frustration out. Sometimes I'll go put on one of my fedoras, set a timer, and have a pity party for 15 minutes. But as soon as that timer rings, I try my best to accept what is, and move on with my life. There's no point in dwelling on what I can't fix; instead I look for any sliver of a silver lining. But something that I've felt even more effective than my 15 minute pity parties is something so simple, I bet a lot of people don't take it seriously. I write down three numbers and a color. 

I journal at least once a day, and every time, at the end of the journal entry, I have the option of "tag"ging the entry with various tags I've created, such that I can reference back to that subject at a later date. It's quite handy for all sorts of things, but I really like it for my numbers and color. Here's the breakdown:

Number 1: My pain level at the time of posting. X/10 pain scale style. So, for sake of demonstration, I'll say that, based on my level of pain right now, I'd tag this post as a 7/10. 

Number 2: My functionality level. X/5 with: 
               1 = very little pain, which can be felt if looked for
               2 = pain that comes and goes
               3 = the pain is always there
               4 = the pain is bad but basic functions can still be preformed
               5 = incapacitated.
For most of yesterday I was a 5/5, as all I could do was lie on the couch and whimper/sleep because of the pain. However, I'm down to the really good 3/5 that I usually aim for. I haven't been a 2 or lower in... years. 

Number 3: My mood on a X/10 scale, with 10 being basically ecstatic. Right now I'd say I'm either a 6 or 7/10. 

The Color: These colors are based on an interpretation of Somatic Experiencing. 
            Red means that my body is basically shut down, either in relaxation or freeze mode from the over-stimulation from the pain.
           Yellow means that my nervous system is highly activated, either in Fight-of-Flight mode because of the pain levels, or else in happiness, such as laughter, excitement, etc.
          Green comes last. Green is the color that your nervous system needs to be in order to have interpersonal communication/relationships. I personally find it very difficult to stay in Green for any extended length of time,  as the pain of my migraines will poke their head into my mood, and I revert to a less pleasant mind state.
For right now, I think I'm yellow. I'm thinking a lot, analyzing what words I'm going to put down, and generally activated. But that's ok.

Now, I'm sure you're wondering how these three numbers and the color relate to healthy venting about my migraines. The answer is that I'm not venting, I'm stating. I've found that, for me, if I start truly venting without being aware of what I'm doing, I can actually trigger more pain than I had been in, which is kinda counterproductive. 

However, if, every day, I just state a fact about how I'm feeling physically, emotionally, and mentally, it's a way of letting myself say exactly how bad it is without going overboard and getting too depressed about the pain and my limitations. Instead, it's just letting a little steam off, such that the pressure builds much less rapidly.

HuffPost Live Appearance

Sorry for the radio silence. Migraines hath abounded. I'm try to stay on an uptick now, however. I hope that it'll last.

Anyway, I was invited last week to be a part of a discussion on the HuffPost Live on Migraines. Apparently, the person organizing the segment found me through this blog! Wow. I was blow out of the water with pleasure and spent the first half hour after reading the invitation saying, "Wow!".

I was fortunate that I was "healthy" that day, and was able to participate. It was a fun thing in which to be a part.

You can see the recorded session here.

"Live Long and Prosper" - (Day 14)

"May you always have one more spoon for your head."

June Blog Carnival

True Migraine Confessions is up and ready for reading!

"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,

You

"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.

"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.

Say WHAT?

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. 

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.

"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 

"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.

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. 

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.

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.

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. 

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

Pets and Reality

One of the sillier things that I've done lately was to get a dog. Well, maybe that's a bit harsh, but it definitely wasn't one of my usual moves.

I grew up with a string of golden retrievers and loving mutts from  the pound f that we'd rescued. So dogs are nothing new to me. My sister begged for a dog of her own since I can remember until she finally got one and got to train it herself. I, however, never really showed much interest in getting a dog. Instead, I went the reptile route. 

First I had a bearded dragon I named l'ej (pronounced Ledge). However, l'ej proved a picky eater. He wouldn't eat any of the crickets that had a calcium supplement on them. As a result, l'ej didn't get enough calcium, and eventually petered out. I was devastated. Years  later, Mom bought me a ball python for my birthday, when I was in the middle of the terrible period where I slept away three years. 

Adam, the snake, was a boost in that I had something I had to take care of. Fortunately, Adam was also exceedingly low maintenance, once I figured out the ins and outs of snake ownership. I loved Adam, and would have him to this day, had it not been for how large he was growing, and thus demanding medium sized rats for food. I didn't mind Adam's size, but I did have a problem dealing with rats that were bigger than my hand. SO I said a reluctant farewell to him.

That was a couple years ago, and I was fine with it. Mom and I still have the dog my sister got to train, and eventually had to leave behind for college. However, I'm not sure, even now, how exactly it happened but last fall, Mom forwarded me an email about a dog who needed a new home; and I fell in love. The dog, Colette, was a lovely, loving dog, but she hated being left home alone while the owners were at work. 

Well, I pretty much am home all of the time, unless I'm out at doctor's appointment or something thrilling like that. I'm fine with being at home that much, I've been like this for... years and years now. So I knew that I would be able to be here for Colette. Colette is 9, so she didn't have a puppy's level of energy, which was a huge caveat. 

So I acquired a dog, and she is awesome. Colette is a total love, and an attention hog. She makes me "wake up" and remember that there's a world out there and that I have to interact with it. She demands scratches and makes me smile. When I'm in a marathon migraine spike, I've actually found her to be a calming presence. Her kisses can ground me and she's usually aware of when I need to be left alone. But, on the other hand, she seems to know when to push just a little. Like today, when I was sitting at my computer and she kept nudging me until I finally managed to walk her around the block.

That walk tired us both out (and increased my head pain) but it was a reminder that the real world exists. So now, Colette's leaving me be, and I'm desperately wishing I could nap. (Edit: I took a three hour nap after writing this..) Still, Colette helps me, and I consider her to be almost a companion dog, who helps me out. So I guess maybe it was just a silly thing I did, in getting a dog?

Colette

Quantum in me fuit,
~Gretchen

A Basic Breakdown of My Upcoming Surgery

Everything's a go for my orthognathic (jaw) surgery. And by that I mean that I've had my first of three pre-op appointments with my oral surgeon.

It was a little odd that he only had three month old X-rays of my jaws, when I had had some done earlier this month, I thought. But in any case, the bone around where my wisdom teeth had looked good as of three months ago, so it means that I've got jaws strong enough to hold together in their new positions. The literature I have on this procedure states that there needs to be a minimum of six to nine months after the extraction of the wisdom teeth for the bone to heal before the surgery is viable. And I'm good to go.

Dr J was looking at the models of my mouth made recently and, indeed, surgery is still needed. He blueprinted (very roughly) what kinds of cuts will be made. All five will be relatively minor, which is nice. Dr J also said that I won't look much different than I do now, as, currently, I thrust my lower jaw forward quite a bit in order to breathe.

At my next appointment, in about a week, they will take "many" molds. These molds will have mock surgery preformed on them, as a dry run, to see the final results. Then, the day before my surgery, (a week after the second appointment) I'll go back to the office for a "detailed" consult, and, I hope, see the molds that have been changed. Dr J said he would be drawing pictures for me at that time, and answering any final questions that I might have before the surgery.

I'll be NPO (nothing by mouth) for the morning of the surgery, but that will be no hardship as I'm due at the hospital to check in at about the time I usually am waking up. After the surgery, it will be interesting to see how well I rouse. I say this as, at my wisdom teeth extraction, it wasn't until I got coffee in me that I really woke up to their satisfaction. However, I doubt that this time, I'll be allowed something as caustic as strong coffee. So that (clinical) need for caffeine will be something that will need to be discussed.

There's a good chance of me being held overnight for observation, and then I will see Dr J when I'm released to have two small stitches removed.

Then comes the recovery... stay tuned!

January Blog Carnival link, and other business

The January Blog Carinval was posted last week. Sorry for the delay in putting up the link, I've been fighting my migraines again. But please, go and read all the different blogs.
___________________________________

Today I have the first of three pre-Op appointments with my jaw surgeon. Today's a general check up on my jaw, as far as I can tell. They might do blood work, but but my understanding was that that would be done on the middle or final appointment before my surgery on Feb. 9.

There are several things that I would like to get straightened out with Dr. J, however. The chief concern of mine is not "Will it hurt?" (that's a secondary, yet still important concern) but rather, How can I take my pills, some of which I take 4 times in a day, if my jaw is either wired or banded shut?


If my jaw is just banded shut, then I would be able to remove the bands, take my meds, and then band my mouth shut again. But I, personally, can't see that my taking the bands off four times a day, especially at the beginning, would be good for the healing of my bones.

Thus I am going to take in a detailed med chart to the appointment, and, hopefully, will get an answer as to how this will work.

I will also be taking in my med chart, as I have on it not only my Daily meds, but also my PRN meds, and, also very importantly, all my counter-indicated medications. These include aspirin, ibuprofen, and acetaminophen. This is especially important as, when I got my wisdom teeth extracted last summer by Dr. J, he prescribed me a pain killer which contained acetaminophen.

Fortunately, I'm not allergic, it simply increases my migraine pain levels with rebound migraines, but still. Fortunately, my pharmacist knows about my rebounds, and wouldn't fill the script. Instead, she called Dr J's office and demanded a different painkiller be prescribed for me. One was, but I'd like to not have a repeat performance of something like that while I'm recovering from the jaw surgery.

I'm planning on taking some notes today during the appointment, and will post again later with some general, and slightly more specific information about the lead up, the procedure, and the recovery stages of this surgery.

Until then,

~Gretchen

2012's Resolution

"What do you resolve to do in 2012 to better manage your migraines?"

2012 started on a sour note for me, with a marathon migraine that’s ended me on a course of Prednisone. However, I have great hopes for the new year. That is because, come in less than a month, I’ll have come to the culmination of over 6 years’ worth of work on my TMJ when I go in for my orthognathic surgery.

Let me explain:

It’s common knowledge that I have had the same migraine for over ten years now. What is not as well known is that, even before 2001, I had as many as six to eight different kinds of separate, identifiably different migraines that I got on a regular basis.

One of the most prevalent types was muscle tension related. My neck and shoulders are like iron most of the time. I’ve been fortunate to find a wonderful massage therapist who has been able to help identify things that were going on in my body, years before we discovered that my TMJ was as severe as it is. The problem lies in my jaws themselves, where the upper is a U, and the lower is more a V shape. So after many years of night guards and bite deprogrammers helping to ease that kind of head pain slightly, it was decided that, to make the very temporary help permanent, I’d go through with the surgery. 

Well, that was over a year ago, as there was a lot of orthodontic work to get me to the stage where I could have the surgery, and now that very special date is less than a month away!

So for my resolutions, I resolve to take my Post Op instructions seriously. I need to take care of my mouth, my body, and my mind as best as possible during the healing process, which will last several months. I resolve to take time to breathe and not push my limits simply because I feel a guilty need that I “should” be doing more than I reasonably can.

I resolve to take care of myself.