Tuesday, October 18, 2011

A recommendation for sufferers

There is an iPhone app that I've been beta testing. It's meant to help people with recurrent migraines or headaches track their attacks.

I've been using the WHI's app for close to two months now. It's been a great way to get back in the groove of getting everything that goes into my migraines recognized.

The WHI is looking for users, who will be compensated for their time/efforts.

Check it out,


Wednesday, September 14, 2011

Approaching Fall

My mom pointed out two things to me last night:

One was that last fall, starting in late September, was very hard for me, migraine wise. Of course, this was no real surprise as fall's always hard for me with the changing of the season. Well, then there was some medical drama in the family starting in October and lasting into November. I wasn't doing too hot for all of that because of the stress.

Then Winter came, and I was doing poorly. We just said, "[I] haven't gotten over Fall."
Then Spring came, and I was still not doing great. "She still hasn't gotten over Fall," was the general consensus.
Summer stunk. "Well, she's still in Fall."

Ok, but now it's approaching Fall again, and I'm still dealing with last year's Fall pain increase.

So the other thing Mom pointed out was that, while we are approaching another Fall, when I haven't gotten over the last one, that means that I can be all the more proud that I've survived a year of Fall. Anything I've accomplished basically counts for double gold stars, precisely because I've been in a perpetual state of fall.

So more power to me!

Quantum in me fuit,

Tuesday, September 13, 2011

Building Resiliency

The September blog carnival is out! There are seven different blogs joining in the carnival this month.

Read, enjoy, and learn!

Quantum in me fuit

Monday, September 5, 2011

10 things learned over 10 years

I have the very dubious honor of "celebrating" my 10th anniversary of my status migranous. (IE I've not had a day without this migraine for 10 years now.) I wanted to sum up each year's trials and tribulations with just a brief, one-liners. So, here goes:

1 Year: The world stops for no one.

2 Years: The System was not meant for people like me.

3 Years: I can make the System work for me.

4 Years: I’m not alone.

5 Years: This isn’t going to go away.

6 Years: Everybody has a private battle they deal with daily.

7 Years: Running away is not the answer.

8 Years: It’s OK to ask for help.

9 Years: You don’t have to fight the truth.

This Year: My “weakness” can be a strength.

Quantum in me fuit,


Monday, August 29, 2011

Poem: I Taste Pain

Similar to
the coppery
of blood, it
has a kind
of sweetness
like that of
rye bread that's
just sitting
in my mouth.

The pain's taste
and leaves an
imprint in
my hazed mind
like a fresh
tattoo of
on my tongue.

leaves this taste
in my mouth
no matter
what how I
rinse my mouth
to wash it
away or
cleanse the taint
from my life.

~G. Rautman
Aug 24, 2011

(originally posted over at www.gretchenrautman.com)

Wednesday, August 10, 2011

A Toothless Grin

Congratulations! Life's been going so spledidly, a migriane has come along to kick you you-know-where, just to remind you that life isn't all Skittles and beer. So now, instead of enjoying a nice summer afternoon with friends, you're locked in a dark, quiet room, whimpering.

   Now there are a couple of options as to what you can do while you're in the dark room. One of them is just to wallow in the misery of the migraine. I did this quite well for several years when my status migranous kicked into high gear. I just slept, up to 20 hours a day, and and avoided life in general. It seemed like my plan was working splendidly. I wasn't aware of the pain, I thought, when I was asleep. Only, I was still very aware of it when I was awake, and I was totally, completely incapable of handling anything. My doctors stepped in, and made me snap out of the sleeping pattern.  I fought them as hard as a limp rag could. It didn't work too great as a form of resistance, which kinda proved their point.
    All this means that wallowing in the pain and suffering of the migraine wasn't an answer at all. There had to be something better; something that I could really hold onto when life kicked me in the teeth. I floated around with resentment for a couple of months, but that didn't really get me through the pain any better than sleeping had. So it was time for something completely different:

 I learned to smile.

    And I do mean learned. I'm not talking about the fake, grit-your-teeth, false smile that I'd used for so long when people asked me how I was doing and I didn't want to tell the truth. No, I mean that I truely took life by the neck and explained to it that it was too going to be pleseant. I found a phrase and internalized it:
"In this moment, you are perfect."
    This was incredibly difficult to actually come to believe. But then it came to me, that this one sentence was true if I accepted something else; that life is not just about the big picture. No, the big picture is made up of millions and millions of moments. Each moment is unique, and should not be compared to the past or the future moments. That's not to say that you shouldn't learn from one moment to the next. (A girl who was in the lecture where I realized this had great difficulty in holding onto that concept.) Rather, every moment should be enjoyed for all that has led up to it, and for all that it will help build in the future moments.

    Another way of thinking about this idea of a "moment", is thinking of each day as Christine Miserandino does in the very well known Spoon Theory. (If you don't know the Spoon Theory, please, take a moment and go read it.) For each spoon we spend each day, is the culmination of a moment. This means that there aren't unlimited moments each day, as, as in the Spoon Theory, we are gifted with a different, limited number of spoons each day.
    What I came to discover and internalize was that, as soon as my mind had been made up as to how to use a spoon, I had made the perfect choice. What I had done before, and what I would do with the rest of my spoons actually relied on  this moment being perfectly spent.

Now when I start to beat myself up because of the Migraine Trip From Hell, I remember that, in this moment, I'm doing my best, and that's all that anybody can reasonably ask of me. And so, when life has kicked me in the teeth, I give it a toothless grin and remember that, in that moment, I am perfect.

Quantum in me fuit,

Tuesday, August 9, 2011

August Blog Carnival:

The August Blog Carnival is up! I have two blog entries in this one, as I couldn't decide between them. I hope that you'll click over to the Carnival's page, and go explore the other really awesome blogs' entries that are featured this month.

Thanks, and I hope this day finds you in good health.

Quantum in me fuit,

Saturday, July 30, 2011

Writing the Future?

I have found over the past couple of years that my wringing, and signature in particular, can change drastically form one day to the next. And I don't think that it's because I'm lazy some days while other days I pay more attention, and care more about what my writing looks like. No, I've found that my handwriting changes most pronouncedly based on what my pain levels are, and what my symptoms are at the moment.

So, I'm keeping a physical journal for the first ime in over a decade. I plan on tracking my writing styles, and figuring out patterns such that I can not only tell what my symptoms are, but, hopefully, what my pain levels might be like in the near future.
If I could find a way to be able to predict migraine spikes based on my handwriting, I might be able to be more proactive and be able to treat the oncoming migraine spikes better than I currently can.
I used to be able to be able to know when to take a rescue medication almost before the symptoms and pain of a migraine spike started. However, I've lost a lot of ability to be able to distinguish the minor waves in pain from oncoming major spikes. This is because my baseline pain levels have been steadily, if slowly, rising over the last several years.This handwriting trick, if it works, will be a huge help for me.

I'm curious if any of my chronic pain readers have noticed any similar signs of changes in their handwriting that can be related to their pain cycles.
Please let me know!

Quantum in me fuit,

Wednesday, July 27, 2011

A Poll for Those With Migraine

The Migraine Research Foundation is conduction a poll on their Facebook page.  The question is as such.:

American employers lose more than $13 billion each year as a result of 113 million lost work days due to headache or migraine. How many days of work have you missed this year because of your pain?

If you have migraines, whether you work or not, please go over to the link above, and answer the poll. There are (currently) seven options available to choose from. However, if none of them fit your answer, tyou are free to create another answer and select that. So far there are only a total of 28 answers, so your input would be greatly appreciated.


Quantum in me fuit,

Wednesday, July 20, 2011

Migraine Disability Assessment Score

 The Migraine Disability Assessment Score is a quantifying series of five questions, used by doctors all over the world, to evaluate exactly how severe a patient's migraine headaches are. The MIDAS can also be used to determine the migraine headaches' disabling level for daily activities.

The MIDAS, as stated above, has five basic questions, and to extra ones that are asked to the patient. Only the first five questions with numeric results, are used to determine the patient's score. The results are based on the number of days, in the past 3 months, that the patient has suffered with their migraine headaches. Instead of counting merely the number of migraine headache episodes the patient has, if they have more than a one day long migraine headache, the total number of days that the migraine headache lasted is used, rather than counting it as only one migraine.

I thought that the MIDAS sounded interesting, and, although I am disabled from my migraines, I thought I'd play along and take the test. My estimated number of days for each question will be in noted in blue.

The MIDAS Questionnaire:
1. In the last 3 months, how many days did you miss school or work because of your headaches? ---- no. of days.  20 days
2.In the last 3 months, how many days was your productivity reduced by half or more because of your headaches? Exclude the days of question 1. ---- no. of days.  20 days
3. In the last 3 months, how many days you did not do household works because of headache? ----- no. of days. 30 days
4. In the last 3 months, how many days your productivity in household work reduced by half or more due to your headaches. Exclude the days of question number three, when you did not do household work. ------- no. of days. 25 days
5.In the last 3 months, how many days did you miss family, social, or leisure activities because of your headaches? ------ no. of days.  40 days
So let's add up the score form these five questions that will form my score, and I get a score of 185.

Additional MIDAS Questionnaire:
> In the last 3 months, how many days did you have a headache? If headache was more than 1 day continuously, count each day. 90 days (aka full 3 months)
> How painful were these headaches, on a scale of 0-10, with 0 for no pain, and 10 for most severe pain one can have. average: 7/10
 Disability Assessment Score for Migraine:
> Grade I - Score of 0-5 (minimal or infrequent disability)
> Grade II - Score of 6-10 (mild or less frequent disability)
> Grade III - Score of 11-20 (moderate disability)
> Grade IV - Score of more than 20 (severe disability)
Let's see, last time I checked, a score of 185 is way higher than a score of 20, so I'm soundly in the Grade IV department, with a  severe disability. 

Who's surprised? Not I. Still, it's interesting to see just how disabled I can be qualified as, even when I think that I'm doing a fairly well.

Quantum in me fuit,
~ Gretchen

All factual information used in this blog was found here from a fake-cut from the Migraine Research Foundation's homepage.

Saturday, July 16, 2011

Touching Others Touches Me

I checked my professional email account yesterday, and got so excited when I saw that I had mail:

Hi Gretchen,

Thank you for writing this book - our daughter [Kiddo]'s just been disagnosed with migraines (at 2) - so will be great to be able to read this and talk things through with her.


[Kiddo's Mom]
The book that Kiddo's Mom is referring to is My Secret, my children's book about chronic pain, and how the child is not alone. I was absolutely thrilled when I read this email. I "squee"ed, clapped my hands together, and was grinning like a fool.

No, I wasn't celebrating that there's a two-year-old kid out there who just got diagnosed with migraines. Instead I was celebrating that I had helped a "chronic kid", and their family. I had made a difference!

Of course, the complete euphoria didn't last, and in the afternoon my mind started drifting to my earliest memories of head pain and migraines.
The memories of me hiding under the stairs at preschool because I didn't want to play or go outside because my head hurt; the memories of me hiding under my mom's desk, seeking comfort and darkness at the same time, things like that. But then I remembered that Kiddo was going to have a leg up on me, because she was getting the message that she wasn't alone. And that I had made it possible for her to learn that.

So I ended the day on a happy note, with a sense of satisfaction that my experiences have not solely effected me and my immediate circle. Instead, I was broadening my reach, and making a difference.

And that's awesome.

Quantum in me fuit,


Friday, July 1, 2011

Drabbles from the Past: Nov. 6, 'o6

 "2 People, 1 Body" was another migraine drabble that I wrote one morning way back. What follows is the original text.

Two people, one body. That is the way that it often seems to me. There truly are two very different people residing in this body, each taking turns to be the one that the world sees. I don’t have multiple personality disorder, it just appears that I am two people; two sides of one coin. One side is the “healthy” me.
This ‘me’ is energetic, curious, spontaneous, funny, and happy. It has a way of finding good in every situation and truly enjoying life. It doesn’t take anything for granted, but appreciates every small, common action, as though it were the best and most thrilling experience. This is because this me knows that the little things are not to be taken for granted. Nothing is certain, there is nothing written in stone, and it cannot be predicted. The healthy me is aware of its surroundings, and takes everything in, storing it my brain to be looked over and appreciated. The smallest things can be the most fascinating. Once, the healthy ‘me’ took almost forty-five minutes walking half a block, following a procession of ants as they marched down the sidewalk, going from lawn to lawn, joining with their fellow ants, and then going into several different ant hills. Eventually, the ants petered out as the last ant hill had been passed. But that trail of ants was fascinating, for it gave me a chance to look at the world from another point of view. Another thing a love to do when I’m healthy is watch people. It doesn’t matter where I am, I can do it sitting at my own dinner table, watching my family, or in some crowed area like Disneyland. This healthy ‘me’ is shy, but once I get to know someone I can be outgoing and fun loving. This is the ‘me’ that will crack jokes and come up with activities that are a little off the beaten path.  But there is another me.
The “sick” me side of the coin is almost a foil of the healthy me. This ‘me' is slow, jaded, serious, and depressed. I see the negative part of everything, having experienced it personally. This me can stare at the wall for hours on end, not seeing, not caring. The smallest things weigh me down, making life harder to deal with. My world is then more comfortable in stark black and white, eliminating almost all shades of grey. Details confuse and frustrate the sick me while even the simplest things are made nearly impossible to comprehend. I once spent close to an hour trying to count to add 4+3 on my fingers, knowing that it was seven, but never getting my fingers to show that. Time and again I would try to count to seven, and each time I would fail, making me feel more and more inept. The sick ‘me’ isn’t interested in people. They are just one more source of stimulation, guilt, and overwhelming emotions. Even those people who I hold dear, I hold at a distance. This ‘me’ wants to be separate from the world; alone in its own little bubble where I have no obligations and nothing increases the pain.
These different ‘me’s depresses, distresses, and scare people. They want a base that can be trusted, and I cannot give them that base. There are times when I am in the middle, when I am in enough pain to slow me down but not enough to make me depressed and mentally useless. This too disturbs some people because they know that it is a delicate balance. Those who know me well, know that when I am balancing on the very edge of razor, ready to fall at either moment to one extreme or the other. There are few times when it is possible to forget the two ‘me’s and just be.

 Quantum in me fuit,

Tuesday, June 28, 2011

Drabbles from the Past: Feb. 24, 'o8

Many, many years ago, I was challenged by one of my friends, who was also an author and migraneur, to try and write something about migraines every morning, as a way of externalizing what I was dealing with. The following is what I wrote late in the period of exercise, and is unedited:

Our society does not like pain. It interferes with the pleasures we have worked so hard to achieve. One of the most obvious ways that society has adapted in order to rid itself of suffering is creating drugs that treat symptoms of pain. Feeling depressed from ordinary stress? Take a pill, instead of figuring out what in your life is causing the depression, and poof, you’re better. Having trouble sleeping? There is another medication for that. Headache? Yet another. The list goes on and on, “curing” the most minor inconveniences of human life. All of the medicines that are so widely marketed are based on treating the symptoms rather than the underlying problem. It as if society is placing band-aids on the different symptoms that life throws at us when there is no physical problem. Yes, there are people with clinical depression, sleeping disorders, and all manner of medical problems. But the problem is that the medicines are no longer specifically promoted in that community only. We now address the public to increase awareness. This is fine as far as it goes, but the problem is that the use of medications, sometimes even the heavy duty ones, are being used by the general public. This means that people who do not suffer. The only problem with this method is that, under the suppressing layers of medication and denial, the main problem is left untreated and often un-noticed, festering until the problem can no longer be covered up by its current band-aid but instead must be readdressed and covered once more with a different band-aid and a new medication.
This band-aid affect is actually now causing its own series of problems. We have started introducing so many different foreign chemical into our systems, in such dosages and frequency that our bodies can eventually end up being harmed rather than helped by the drugs mean to rid us of our problems. Painkillers can cause stomach problems, other medications side effects can be high blood pressure, sleepiness, stiffness, heartburn, and heart problems. The list goes on and on. Sometimes, the side effects of a medicine can be so like the original symptoms that it seems pointless to take it. The devotion of our society to medication has almost turned into a joke. Comic strip characters create cures to common ailments such as the cold, admitting that the side effects can be runny nose, coughing, congestion, and all the other symptoms of the cold itself. There is one strip that I always found particularly poignant. “Never take a medication that has more side effects than you have symptoms.” But if this advice was take to heart, how many medications would we be on?
I’m not knocking the progress that modern medicine has made in general. After all, I live as well as I do because of modern medications. If it were not for the meds that I take, I would lead a much less active life, as ridiculous as that seems. However, I have not escaped unscathed from my med usage. I have gained weight and have to take additional meds to deal with some of the unpleasant side effects that come with the meds that I rely on the most. However, I am always trying to trim down my medical regime, so that I am on as few meds as possible.
There was a time when medicine was the last resort. People would try homeopathic remedies, change their life styles, and anything else they could think of to rid themselves of the problem before they surrendered and turned to science and pharmaceutical solutions. But that was back when society admitted that pain was a part of life. Why has our society changed so that it no longer admits the existence of pain as a crucial part of life?

Growing up with migraines, I automatically accepted the idea that pain was a part of life. After all, for me it was. It was always there with me, however briefly or sporadically, all my life. As I got older and the pain became more severe and more constant, I was already conditioned so that it did not catch me off guard. It was rather like when walking barefoot along the beach when the water is still cold. Eventually, the cold doesn’t get to you in the same way; your body has become numb to it. It’s not until later, when your feet are no longer in the water that you start to feel the pain as the nerves come back to life. While that might sound sick to relate that to my life, it’s a survival instinct. I have become, not immune, but certainly less susceptible to the pain than I would be if this had come on suddenly.
I accept that pain is a part of life, but that does not mean that I surrender to it. This is a foreign concept to some people, and they think it sounds contradictory. But it is not. I have learned that pain is a part of life, and acknowledge its existence. However, I do not let it rule my world. I give allowances for things that I can no longer do, but that does not mean that I lie down and become a doormat that the pain may walk over. There is a difference between acceptance and surrender.
Acceptance means that I no longer beat myself against the wall that blocks me from some aspects of life. I accept my limitations and do my best to thrive in the environment that I have to live in. I accept that there are things that I cannot do, something that was not easy in the beginning. It is hard to wake up one day and realize all the things that you had thought your future would contain are now out of reach. It was a hard day indeed when I realized that I could no longer continue in a standardized learning environment. I had always based my life around my studies and all the activities required therein. I had run out of band aids and was left to face a raw open sore on my own. It felt like somebody was ripping off the band aid, and it took quite some time to come to accept my new life. I am still reluctant to examine my limitations too closely some days, but for the most part, I have come to realize that this sore can heal if I give it the attention that it deserves. But I refuse to surrender.
To surrender would mean that I have rolled over and let the pain take charge of my life. That I have let the sore fester and become more dangerous than it was when I first ran out of band aids. This is not something that I will do. To surrender to the pain is to take the easy way out. It is much easier to throw up your hands and say, “Well, I tried,” than it is to say, “I will try.” There is a Latin phase that I found in a Dick Francis book that struck a chord with me, quantum in me fuit. Loosely translated, it means “I did the best I could.” This has become my motto in life. Whatever I do might not be what my best used to be, but it was the best that I could do that day. And what my best is some days might not be my best another, but that doesn’t matter. What matters is that I try my best all the time. I don’t let the pain make me settle for less than 100% of what I can give. I have come to understand my limitations, but I do not sit down and never strive to improve myself and what my best is. That would be a true surrender to the pain.

Wednesday, June 15, 2011

June Blog Carnival

The June migraine blog carnival is out! This month's theme:

Favorite Migraine Posts   Click, read, enjoy, pass it on.

I'll try and have something new for you all to read from me soonish.


Wednesday, April 13, 2011

Western New York Migraine and Headache Disorder Support Group

Got a message from one of my fellow migraine sufferers just now:

Hey there,
I am finally starting the first Western New York Migraine and Headache Disorder Support Group next week.

Here are the details:
Tuesday April 19, 2011 - 7:00 pm
6095 Transit Road East Amherst NY 14051
Plenty of support and parking too

I'd go if I lived anywhere near that part of the country. So if you do live in Western New York, and want a support group, for patients, friends, and/or family, go on over to the site and learn more. 

Quantum in me fuit,


What does pain feel like?

This is what I'm thinking right now. And I'm thinking hard, because I'm confused as to what pain is right now. See, let me explain why/how I'm confused.

As you might well have read, I've just had all 4 wisdom teeth extracted yesterday. The collective "they" had all told me that this was going to hurt, probably pretty badly for the first 48 hours at least.

Well, yesterday, I was at least partially numb until well after dinner. However, I religiously took my oxycodone every 6 hours (along w/ my antibiotic) so that I would stay ahead of the pain.

Around 11:30, I woke up with some discomfort in my jaws, and so took another oxycodone and some peach frozen yogurt to forestall the pain from setting in, and went back to sleep.

Well, today's day two, and no part of my face is the tingly or complete numb that it was yesterday. I took oxycodone and my antibiotic when I woke up, thinking it would could be the last time that I took the oxycodone, as I really hadn't been feeling much pain, and I don't want to over do the taking of it.

Well, then the morning passed, and I had lunch (peach fro yo blended with strawberry yogurt!) and was talking to Beth, when all of a sudden I realized that my jaws felt uncomfortable. I was also a little more puffy in the cheeks than I had been in the morning when Marcelle had been helping me to remember to change my moist heat packs for the 20min on, 20 min off thing to prevent swelling. So I topped and evaluated what my jaws really felt like in an attempt to decide if I needed to take another oxycodone, as it was getting to be that time again.

I sent out my body scout, and he came back TOTALLY confused. My jaws were in discomfort, yes, but were they in pain? The discomfort that I felt, which my body scout labeled as fiery and stabbing, was not pleasant, no, but it wasn't the kind of pain I'm used to with my migraines. The jaw discomfort would rank, what I would imagine a 1/10 or 2/10 migraine would feel like. (I can only imagine, I have never been below a 6/10 in several years basically in migraine pain.)

However, the fiery stabbing sensation was uncomfortable, or at least not pleasant or neutral, and I was worried that it could trigger a spike 'real'(?) migraine pain. So I took any oxycodone (which has not touched my normal [head]pain levels, btw) to forestall that from happening.

But I'm really, honestly confused right now.

Is my brain so embedded in the status migranous that I don't recognize other intrusions on my head as pain?

Is my pain threshold huge and actually I am feeling a lot of 'pain' in my jaws, and it's just dwarfed by my experiences with migraines?

What does "pain" feel like?

I'm so confused and bemused (and slightly discouraged) by this conundrum.

any insight into 'pain'?

Quantum in me fuit,


Tuesday, April 12, 2011

An Anecdotal Reminder About Rebounds

I just wrote this in my journal, and I thought I'd share it with all of your.

I had all 4 wisdom teeth yanked this morning. I had expected full, black out anesthetic, when it turns out I got twilight, which was kinda cool. They kept telling me to breathe...so apparently I wasn't doing too hot a job of that, but other than that it went very...calmly. I didn't feel a thing, and could only feel a bit of pressure, and the sound of the sander.

Then they put me in recovery. And I got drowsier, and drowsier, and drowsier....until I could not keep both eyes open despite my best efforts. They were starting to get concerned, and then, somehow, I'm not sure as I was getting less aware of things, the fact that I usually drink 5 cups of coffee every morning and that I'd been NPO when I came in. I had even joked with the nurses going into the procedure that I wanted my coffee. So, this is awesome, one of the nurses went a brewed a cup of coffee for me. :D I dribbled about half of it down my chin, because I couldn't feel my lips, but within a couple swallows, I started to wake up, and start 'talking', and generally act human. They were kinda amazed, and I wanted to say "I TOLD you so!" but didn't as that would have taken speaking. So I thanked them, and got the heck out of there, as I was now awake.

Then we went across the street to our pharmacy, to get my painkiller and antibiotic scripts filled. They said it would take ~20 minutes, so we went another block to McDonald's and I got a vanilla milkshake and a spoon (no straws allowed) and Mom and I had "lunch". I made a total mess, as I still couldn't feel my lips, but my body liked the milkshake, so Mom just got a stack of napkins and we dealt with it. It wasn't that that bad.

Then we went back to the pharmacy, and I waited in the car while Mom went in to pick up the meds. And I waited, and waited, and waited. Finally, Mom came out and told me that our pharmacist wouldn't even give Mom the prescribed painkiller, because guess what?


Fail. That would give me an instant rebound migraine. I love my pharmacist for catching this. I would not have been happy if I had triggered a rebound migraine while trying to treat my jaw pain. So...we came home w/ just the antibiotic and a recommendation for what painkiller to ask for. (I happen to have some of it in my med cabinet for my migraines, so it's not PANIC(!) time, but I only have something like 7 pills left...out of a one time prescription for 10 pills, so Mom just called the oral surgeon and asked for the recommended painkiller that doesn't have Tylenol, aspirin, or ibuprofen mixed into it, as all of those cause rebounds.

Then, having read my journal entry, one of my friends asked me a question in the comments:

"...So if you take any pain killers with tylenol, aspirin, or ibuprofen you get a migraine from the medication? I just want to make sure i have it clear."

This is what I replied with:

"Yeah, ever since 8th grade ('o1) I haven't been able to take Tylenol, aspirin, or ibuprofen without getting horrendous migraine, because I took so much of them in things like Excedrin Migraine, and other OTC painkillers for my increasingly severe migraines. I now get what's called a rebound migraine from any of them, even if I take, say, a Tylenol for a really bad burn I got on my hand from the stove. It's because my brain saw those chemicals, and the migraine pain together so often, that now, whenever it sees the chemical, it assumes that there is migraine pain, and will actually create it if there isn't, just to keep me what it sees as "normal." 

It stinks and is quite painful, so I take Aleve (aka Naproxen) very sparingly, because I don't want to get rebounds from it as well."

I'm going to get on my Soapbox for a moment here, now. I think a lot of people underestimate the potential potency of OTC pain meds, such as the ones that I took. I'm not saying that you should never use OTC painkillers, that's absurd. However, the rule of thumb, so to speak, is that you take no more than the recommended max dose 3 days over the course of a week, unless specified otherwise by a doc or some other medical professional. And then, for only 2 weeks or so. If your pain is so bad that you need the painkillers more than that, you need to contact your doc and get seen.

I didn't know what I was doing with the Excedrin Migraine, until it was too late. So now, I really advocate awareness about responsible use of OTC painkillers, and meds in general. I don't want others to go through what I'm living with.

So be aware, be careful, and please, never take any medication lightly.

Quantum in me fuit,


Monday, April 11, 2011

Migraines & Frustration

Here is the April blog carnival. I didn't get a chance to submit (hello marathon migraine!) but check out the link, and I'll post what would have been my entry here.

Yeah, they go together, as proved by the above: a marathon migraine spike lost me the opportunity to contribute to the April blog carnival. I got the reminder e-mail, the day before it was due, and I was heading to bed as reclining on the couch was too painful. Not a good time to start writing a coherent blog that I want published. 

In retrospect, maybe I should have gone ahead and slammed something out and emailed it off. However, it probably would have been just a depressed/angry rant on the suckage of migraines. And I don't think that that's really what I should be presenting. 

Instead, I want to talk about how to deal with the frustration that migraines bring. 

Migraines can bring tremendous inspiration for me sometimes, but they can also bring killer writer's block that lasts long after the pain's become reasonable again. Writing this is like pulling teeth right now, because I'm still recovering from the brain block that the over three week long migraine lasted. 

However, instead of getting frustrated and quitting, I'm taking this slowly, and writing one or two sentences, and then pausing to collect my thoughts again. That and I'm going to make this short.

The answer to the frustration is not to fight it. Instead, understand the frustration, and then try and resolve that frustration with diligence and patience.

Quantum in me fuit,


Monday, April 4, 2011

I am thankful for...

A ChronicBabe.com  blog carnival has been posted here. I'm only one of a great many giving thanks.

So, be thankful, even in the face of adversity.

Quantum in me fuit,


Wednesday, March 30, 2011

Have fun, and support the MRF!

There are still some seats available, so sign up if you can here!

And please spread the word! It's for an excellent cause.


Tuesday, March 29, 2011

The Message Has Been Heard

Many years ago, I was told, for what felt like the millionth time, that I couldn’t have had migraines as a very young kid. That I was exaggerating. That I was lying.

I was livid.

I was also on campus, and could only go as far as my mother’s office to get away from the agitator and uncomprehending aggressor. However, I couldn’t get away from their words, or the memories that their words brought to mind. I could remember the pain so clearly. I had taught my body to remember pain by that time. It was out of self defense that I fought nature’s desire to block painful memories. I trained and trained since I was six to remember exactly what the pain felt like. I learned to remember so that I could diagnose myself and know what kind of thing had caused the pain, so I could try and avoid it in the future if possible. I was so good, I could identify 7 or 8 different types of migraines that I was getting, complete with what triggered them, and how best to treat them.

While the knowing how to best treat the migraine was nice, the memories of the migraines definitely fell into the “mixed blessings” category. And that spring afternoon, it was not a good thing. I was wrapped in the memories of my childhood migraines. Of hiding under the stairs at my preschool because the light hurt my eyes. Of going with my mom to her school, because I was in too much pain to go to mine so often that her officemate named his computer “Gretchen” to make me smile.  I remembered that in pre-school and like I would do later that afternoon,  crawl under my mom’s desk and just hide from the world; desperate to get away from the pain in my head.

And somebody had the gall to tell me that it was all a lie.

So I sat down at Mom’s desk, opened a Word document, and began to type, airing my frustration, the pain, and the memories. Fifteen minutes later, I had a367 word stream of consciousness addressed to my fellow child sufferers.

It wasn’t until 2009, when I was talking with one of my cousins, that I even remembered the stream of consciousness, and I sent it to her. My cousin thought that what I had written needed to be shared.

And thus, My Secret was born.

My cousin was my champion. She found me an illustrator to turn my words into something that could be comprehended by my audience.

I finally put My Secret out there for the world in early 2010. Now it’s 2011, maybe 5 or so years since that fateful afternoon, when I sat down in a fit of pique, and I just Googled my name.

I’ll admit it; I let out a very quiet, but very real, “SQUEE!” and my jaw did, indeed, drop. My name was out there, but not just where I had put it. Other people were picking up on My Secret and spreading the word.

I found a site which had an article promoting my book, and the comments made me want to cry. I had reached my audience! There were parents talking about their children, (chronic kids, I call them) and the parents were sharing their experiences. They were talking to their children, with my book or without it, I didn’t care, but they were getting it. Getting the idea that kids can feel pain. My Secret had accomplished what I never dreamed I could do; touch people’s lives.  

I have told them that
It can still be scary when the pain is bad.
I still cry sometimes, …but that’s OK.
I know I’m not alone.
And I’ll tell you a good secret…
Neither are you!

So to my doubter, my agitator, and my aggressor, I thank you. Your doubt in me has given other people hope. And that has made all the difference.

Quantum in me fuit,


Sunday, March 6, 2011

"Life Hacks: Tweaking Work & Life to Deal with Migraines."

I have had writer’s block for well over a month. So I quit writing for a bit, as it was just getting too frustrating trying to force the words out when there weren’t any there. And that’s pretty much what life with migraines is like. It can get really frustrating and self-defeating to fight the pain. It’s so much easier and healthier in the long run, to just put what you’re trying to do to the side for the moment, and come back to it later when the situation is more favorable.

I tried forcing myself forward back in high school; to continue to live the life of an ‘A’ student, and have debilitating migraines. It just didn’t work, and in the end I completely burned out. And I do mean completely burned out. As in I was basically nonfunctional for the next year and a half while my body unloaded all the stress that had built up and buried deep inside my body and mind.

It was, as my Somatic Experiencing therapist explained to me, as if I had been shaking and shaking the coke bottle, without ever giving it time to breathe and release some of the carbonation gradually. Rather, I kept shaking the bottle, in this case, my body and mind, until the bottle exploded from the pressure.

So now I’m learning to listen to my migraines and energy levels. I don’t force my mind to go beyond what is comfortable. That doesn’t mean that I take things easy and never stretch my limits, no. What it means is that I try to slowly stretch my limits, AND THEN STOP, and not insist on going until I run into a brick wall at full speed and then spend weeks recovering.

This is rather like stretching a rubber band out. If you start out gradually, and just gently tug the ends of the rubber band in opposite directions in breaths; stretching and then releasing it a little, and then stretching some more. Stretching a rubber band like this will, if you do it right, gradually let you stretch the rubber band much farther than if you had just pulled with all your strength at the beginning. If you had done that, the rubber band would have just snapped, and slapped your fingers.

So far, I’ve stretched the rubber band of my migraine filled life farther than I had previously even imagined that I could. But it hasn’t all been at once. It’s taken years of dedicated gentleness and consideration of what I could and could not do, versus what I should or should not do. I stretched my limitations where appropriate, such as making myself walk to the mailbox every day, and knowing when to pull back and say “Sorry, no” to walking the grocery store on a bad day.

So even though I had writer’s block at the beginning of writing this entry, I just let it and my mind breathe, and I now have an almost completed entry. I didn’t fight for every word, and I hope that it sounds better than it would have had I completely written it the first time I sat down to write. 

Quantum in me fuit,