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,


~Gretchen

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.

~Gretchen

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,

~Gretchen

"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,

~Gretchen

January Blog Carnival

January's Blog Carnival is now up and ready for visitors.

My entry is here as previously posted. However, there are many other entries, each taking the prompt in a different way.

I encourage you to go and read some of the others' work!


Quantum in me fuit,


~Gretchen

"Taking Charge of Our Migraines in 2011"

I'm going to kind of come at this prompt in a different direction than one might expect. I'm not going to go after a cure this year, I'm not going to resolve to lower my pain levels, (although that would be awesome).  I'm going to take charge of my migraines in 2011 by doing two main things:

1. Make new friends and keep up with the ones I have. 

I lost a good friend last year because I didn't stay as active and involved in their life as they needed. Also, people are encouraging me to get out more, when I can, and see people, as it's mentally healthier to see more than just a couple people at the most.

 By making new friends, I'll be given opportunities to help and support, and get support from them. I'll also be able to slowly chisel away at my isolation that the migraines sent me into. By getting out more, I'll be breaking the cycle that the migraines set in place.

2. Promote My Secret, the book that I self published this time last year. 

I need to be getting the book to the people, especially the kids, who need it, and the reassurance I hope that it brings to them. By helping others find a sense of comfort, I gain a sense of comfort, because I know that despite all my limitations, I can make a positive difference. 

Also, as all the proceeds of the sales go to the Migraine Research Foundation, I will, by getting my book out into the market, I'll be bringing money to the Migraine Research Foundation so they can continue with their awesome work studying migraines. I've made headway by getting my offer of donating books to the Migraine Research Foundation accepted; and be mentioned on their For Our Children page. 

Gathering support for My Secret has also been making me new friends, or at least strengthening ties that are already there. Two of my semi-distant cousins have found me through/on Facebook, and have offered their knowledge and help in getting the story illustrated, organized, and printed, and by offering helpful suggestions for how to present My Secret, and myself to the public. In addition, acquaintances are also coming forward to offer what experience and expertise they have.

Both of these latter things are letting me jump-start my first goal, of making friends, and keeping up with old ones. 

So how does this all make me take charge of my migraines in the upcoming year? These two endeavors will put me in the driver's seat of my life, instead of my taking a backseat to the migraines leading me on a path to nowhere. I've tried that in past years, being passive, or beating my head against the brick wall (metaphorically) and it did nothing. So this year I'm going to take some simple steps towards making my life more meaningful.

Quantum in me fuit,

~Gretchen

Help Me Reach Others

I'm donating 20 copies of My Secret, my children's book, to the Migraine Research Foundation for distribution. They'd like to help me spread it around more, but I need to figure out who my target audience and how to reach them first. The problem with doc offices, and the MRF, and places like that, are that, by the time the kids are there, their pain isn't a secret anymore and that kinda nullifies the purpose of the book, which is to get the conversation about the pain started.

I'm currently thinking promoting it in parenting magazines, as well as getting back on the horse for submitting to publishing companies. I'm trying to figure out how else/who else would want my book. Social workers? Pre-school teachers? I'm coming up empty.

Any suggestions (in the comments or to grautman@gmail.com)  would be greatly appreciated!

Thanks in advance!

Quantum in me fuit,


~Gretchen

Have a Beer, Doc.

Doctors who drink beer are awesome.

And yes, that actually does make sense for a blog entry about good and bad doctors. Let me explain by giving you two (slightly paraphrased) quotations, taken completely out of context, from two different neurologists I've seen.

Doc #1: "Your pain is a top priority for me and my staff..."

Doc #2: "...I understand that your head hurts; but at the end of the day, I go home and drink a beer..."

I'll bet you think that Doc #2 was horrible, and that you're still really confused as to why I think that a beer drinker is a good doctor. Let me explain.

At the time Doc #2 said that, I was in the throws of a horrendous marathon migraine, and was going through all kinds of hurt trying to get the pain to a level where I could function. During the 5-10 minutes I was in the waiting room waiting for my appointment, I ended up basically curled up in the fetal position and sobbing because the door behind me that kept opening wasn't lubricated well and it had a small high-pitched squeak to it. It was horribly painful, and I can still remember wanting to just curl up and disappear because of the pain. I was saved from the squeaky door when Doc #2 ushered me and my mother into the examining room.

There, he told me that he was seeing a lot of "pain-like behavior," indicating to my curled over posture, dark glasses, and the fact that I was rocking back and forth, among other things that I'm sure I was doing but don't remember.

Doc #2 explained to me that I *had* to stop wearing dark glasses inside, sit up straight, and generally act like I wasn't in pain. I tried to explain to him that I was doing the best that I possibly could, and that he just didn't get it.

That's when he said his bit about drinking beer.

At the time, I was flabbergasted and hurt and annoyed. I was sure he didn't get it.

About a year later, I heard Doc #1 say his line. I followed Doc #1 blindly for 5 weeks in the hospital, and then later that year, for another 2 week, trying hard to find a break for my migraines before he said something else: "You're a failure...",  and forbade any of his staff from touching me with a 10 foot pole,  much less treating me.

Again, I was flabbergasted. And hurt.

Then, about a year later, I realized Doc #2 was much better than Doc #1.

He had detached himself from my suffering, and so was, actually, able to treat me better because he didn't have a personal interest in it other than his professional interest. Doc #1 got so involved in every step of my treatment that, when he couldn't "fix" me, it frustrated him tremendously. Doc #2 still gets frustrated when things don't work out the way he had hoped or planned, but he doesn't take it personally the way that Doc #1 did. 

And so I have come to the conclusion that doctors who are, at the end of the day, able to leave their patients at work and go home and drink a beer end up being better doctors. 

Quantum in me fuit

~Gretchen

Making the Holidays Special Despite Everything

The Question: How can we make the holidays special despite the need to limit our migraine triggers?

The Answer: very carefully. I’ve had some pretty bad holidays over the years, and I’ve learned to pay attention to the smallest details. I start my Christmas shopping in January, and just gradually buy gifts as I see them instead of waiting until the last month and then trying to cram everything in. That doesn't work, I’ve tried it.

As for all the holiday food, moderation is best. I have to be careful of what I eat as many of my favorite cookies and holiday foods are now have ingredients that trigger migraines for me. It was very hard to learn to say “no” to those foods, but in the end, it was better to deny myself the short-term pleasure than suffer the long-term, painful consequences.

Then comes my family. It is always stressful for me to be around a lot of people for a long period of time. I’m an introvert, and am used to having many hours during each day all to myself while my mom is at work. Then to suddenly be forced to deal with up to 12 people and three dogs in my house for the better part of the day is just totally overwhelming. I usually end up taking Xanax on a fairly regular basis, or crashing and hiding in my room.

This Christmas, however, it’s going to be a little different. Back in mid-September, I agreed to house and dog sit for a family friend while she goes back East. This means that I’ll have a completely separate place, all to myself to retreat to.

Don’t get me wrong, I love my family, but they’re much more high energy than I am, and I burn through spoons quite quickly when I’m with them. I think that my spending the night away from my house, and then coming back to it during the day will make me appreciate the time I do spend with my family all the more.

So basically, moderation in all things is the way for me to have the best holidays that I can.

Quantum in me fuit

~Gretchen

What Am I Thankful For?

So the question is, "What are you thankful for in your life despite living with migraine disease?" Strange as it sounds, I’m actually thankful for my migraine disease being in my life. I know that that sounds really odd, and slightly masochistic, but it’s not.

I have had migraines for as long I can remember, at least, and possibly since birth. I screamed for the first year I was alive, and nobody could find anything wrong with me. I remember in preschool hiding under the stairs, not wanting to play with my friends sometimes. I was always drawn to the dark places, curled up under my mom’s desk, under the stairs, etc.

This last summer, my sister and I were going through a lot of pictures, school papers, and other memorabilia that my mom had kept over the years. I found something that fascinated me. It was two pictures that I had drawn something like three days apart, as my mom always put the date on our ‘art’. The first picture of “a person” was a nice picture for a 3(?) year old. It was mostly a stick figure with squiggles for hair. Ok fine, cute. But what makes it so remarkable was the “self portrait” that I did three days apart. Again, the stick figure body, but this time, the “hair” was straight lines slashing through my head at various angles. And the lines that represented the hair were basically slashed into the paper, with much greater pressure than the rest of the body, or the previous piece’s pencil pressure had been. In other pieces of art, as I progressed to colored paintings, I would, some days, have bright sunny paintings, and other times everything would be red and black. I remember calling them “angry” colors at that age.

By the time I got to fist grade, the disease was interfering with my life enough, that, on the “getting to know the student” paper that my teacher sent home, my mom wrote, “Unfortunately, the headaches are real.”

I remember in second and third grade, sometimes having to crawl up into the loft that my teacher had in our classroom and just lie up there during class because the nurse had kicked me out of her office for being there too much.

I discovered my first food allergy about that time as well. Chocolate. That was interesting to my mom, as, back in preschool, when I felt sick, I avoided things like M&Ms on my own. So maybe I was actually sensitive to it long before we identified it as a trigger? I’m not sure.

Anyway, I won’t chronicle each school year’s changes as the migraines got worse. I’ll just add that I had to withdraw from gymnastics in end of 4^th-beginning of 5^th grade because I was passing out from the pain at times. Also in 5^th grade, my pediatrician gave up trying to treat my migraines on his own, and sent me off to a pediatric neurologist, who put me on my first daily, preventative medication.

As I was telling a friend the other day, I went downhill so fast from there, that my schooling got very sporadic because of my marathon absences due to my weeks long migraines. My 7^th grade year was basically the last year that I actually went to school on a regular basis, as in 8^th grade I got my status migrainous.

That was 9 years ago, and I haven’t had a day without a migraine since early 8^th grade.  I finally threw in the towel and withdrew from school, which I had loved going to, in 11^th grade, as soon as I was basically old enough that I could.

So, anyway, that’s my early history with my migraines. And, as I get older, I get progressively more and more grateful that I started getting migraines when I did, because I don’t remember a life without them. That make some people sad to hear, and go “oh, poor you,” but I don’t look at it that way. I see it as a stroke of luck. I have no definite “Before” and “After” memories of life without the pain of migraines, and then all of a sudden, a life with migraines. It just didn’t work that way for me. And I think I’m lucky for it.

Since I grew up with my migraines growing with me, I don’t really feel bad about the fact that I’m now disabled. It just kind of grew with me, and as a result, I’ve had all 23 years to adjust to the idea; so it’s nothing special, just part of who I am. But I don’t let the migraines be ALL of me, either.

I’m grateful that the migraines have made me a much more tolerant person. I can put up with a lot, emotionally, physically, and with other people. I know what it’s like when people treat me poorly because, since I’m disabled, I must be stupid, so I really try and give everybody an equal footing in my mind. I also accept people’s limitations, whatever that limitation is, as I know that I want people to accept my limitations, however sporadic they are.

The migraines have also made me appreciate the good days a lot more. I’ve learned to take life one day at a time, and truly enjoy the good moments, because I know that I don’t know when the next really awesome one will happen.

I’m very grateful that, as my migraines have gotten worse over the years, I’ve found increasing support online, and made some really awesome friends who actually get it, because they’re dealing with similar situations themselves. I have closer bonds with people I’ve never laid eyes on than people I grew up going to school with, and I’m completely fine with that. All I care about is that my friends, digital or “analogue” are supportive.

I’m also grateful for my migraines giving me the pain at a young age as it allows me to help others who are only just starting to suffer. I can tell them, “It’s ok. Life does go on,” and mean it. I’ve been told, years down the road, that I’ve helped people through the first couple of migraines and have been helpful, and that touches me so much.

So all together? I’m grateful for my migraines because I think that they’ve made me a better, stronger person than I might have been otherwise.

Quantum in me fuit,

~Gretchen