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
~Gretchen

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,

~Gretchen

Poem: I Taste Pain

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

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

Deviltry
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)

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,
~Gretchen

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,
~Gretchen

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,
~Gretchen

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.

Thanks!


Quantum in me fuit,
~Gretchen

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.

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.

Regardsxxxx

[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,

~Gretchen

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,
~Gretchen