Monday, December 27, 2010

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  would be greatly appreciated!

Thanks in advance!

Quantum in me fuit,


Wednesday, December 22, 2010

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


Tuesday, December 7, 2010

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


Tuesday, October 26, 2010

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 4th-beginning of 5th grade because I was passing out from the pain at times. Also in 5th 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 7th grade year was basically the last year that I actually went to school on a regular basis, as in 8th grade I got my status migrainous.
That was 9 years ago, and I haven’t had a day without a migraine since early 8th grade.  I finally threw in the towel and withdrew from school, which I had loved going to, in 11th 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,


Tuesday, September 21, 2010

The Understated Threat of Rebounds

I had a nasty scare yesterday afternoon; I thought I was getting a rebound headache from my painkiller, Tramadol. I ended up calling my neurologist, and asking him what to do. He called me back and asked what had happened.

I'd been doing poorly all day, but around noon, the pain really started to increasing. At 1:30ish, I took some Frova and a 50mg of Tramadol. Half an hour later, the pain was still getting worse, so I took the other 50mg of Tramadol that I'm allowed to take. Well, that seemed to take the intensity away for about 45 minutes, and then I got a huge spike in pain. The first thing that came into my pain wracked brain was "rebound".

I'm very familiar with rebound headaches, as I get them from ibuprofen (Motrin) and acetaminophen (Tylenol). That's because, when my status migrainous was first setting in, I didn't know to ration how much pain medication I took a week, and ended up triggering rebound headaches on top of my migraine. So, since I was in more pain, I took more pain meds, which made the pain worse, lather, rinse, repeat. I thought that, since the pills were OTC, it was ok. And I never took more than the maximum dose in 24 hours. I was very careful about that part. I just didn't know that I could only take them (safely) a couple of times a week. Finally, my neurologist found out how much I was taking, and basically banned me from taking anything. He gave me a script for Tramadol, and that's been basically my one painkiller ever since.

So, given my history, when I took a painkiller, and shortly afterwards the pain got worse, my first thought was rebounds. However, Dr. B (my neurologist) told me that basically the spike was "bad luck" and that there's a very small chance that I'd be getting rebounds from the Tramadol. He told me that that's why he gave it to me in the first place.

That was very reassuring to hear.

However, even though I wasn't getting a rebound headache from the Tramadol, I felt compelled to write this blog today. Most people, like I did, think that if the painkiller is OTC, it's basically safe to take. This is true, to a point.

But even if the painkiller (Excedrin Migraine was my painkiller of choice back then) is OTC, and you're following the dosing instructions to a T, you really shouldn't take that painkiller more than about 3 days a week without consulting your doctor.

The warning of rebound headaches isn't on bottles' warning labels, and I find that very frustrating. I was, I thought, doing exactly the right thing by not taking more mediation in a 24 hour period than what was recommended. But since I took the Excedrin Migraine almost every day, I ended up with sensitivities to Tylenol and ibuprofen that last to this day.

That's something else they don't tell you. Once you start getting rebound headaches, it's possible that your body will never be able to tolerate that medication without giving you a rebound headache.

A couple years ago, I tried taking some ibuprofen for my costochondritis, and I ended up getting a rebound headache, even though my head pain had been moderate and not what I was taking the ibuprofen for. It was very frustrating. Now I have to be very careful what painkillers I take if I go to the ER or something like that, as a lot of painkillers that the ER uses contain acetaminophen or ibuprofen.

So listen to my story, and take away a  bit of knowledge. TELL YOUR DOCTOR how many painkillers you're taking, and how often you take them. They really need to know. If your doctor clears you to take painkillers more than 3 times a week or so, then you can, of course, follow their direction. But if you're self medicating, please be careful!

Quantum in me fuit,


Tuesday, September 14, 2010

30 Things Meme

I found this meme over here and thought it would be interesting to fill out. Feel free to skip over it if you want.

1. The illness I live with is: status migrainous
2. I was diagnosed with it in the year: 2004
3. But I had symptoms since: birth (1987)
4. The biggest adjustment I’ve had to make is: letting go of some dreams, and instead learning to go my own way.
5. Most people assume: that I'm stupid because I'm in pain
6. The hardest part about mornings are: waking up and coming back into awareness of the pain
7. My favorite medical TV show is: nothing. I find them frustrating.
8. A gadget I couldn’t live without is: my laptop. It connects me to the world where I would otherwise be alone.
9. The hardest part about nights are: the times when it hurts too much to close my eyes.
10. Each day I take __ pills & vitamins. (No comments, please) 11 different Rxs, I can't count the number of actual capsules right now.
11. Regarding alternative treatments I: practice somatic experiencing, but recently had to give up acupuncture as it was making the pain worse.
12. If I had to choose between an invisible illness or visible I would choose:....invisible most likely. It's nice to be able to occasionally pass for a "normal" person.
13. Regarding working and career: I can't really have one. I've been disabled since 'o5 when I had to drop out of high school.
14. People would be surprised to know: I would think twice before taking a miracle cure, as I don't know a life without pain.
15. The hardest thing to accept about my new reality has been: the fact that I appear weak.
16. Something I never thought I could do with my illness that I did was: turn it into something positive by publishing my children's book.
17. The commercials about my illness: don't really exist. Commercials about migraine in general annoy me because it makes it seem like a pill can cure everything. They never mention the times when the pain becomes intractable.
18. Something I really miss doing since I was diagnosed is: playing my violin. I had to stop symphony and private lessons because I was falling too far behind because of the pain.
19. It was really hard to have to give up: school. I was a huge nerd, and loved school so much. It broke my heart to withdraw.
20. A new hobby I have taken up since my diagnosis is: writing and helping others.
21. If I could have one day of feeling normal again I would: probably freak out. I wouldn't know what to do.
22. My illness has taught me: that it's ok to ask for help.
23. Want to know a secret? One thing people say that gets under my skin is: "I know my headache isn't anywhere near as bad as yours is."
24. But I love it when people: treat me like a person, rather than a disease.
25. My favorite motto, scripture, quote that gets me through tough times is: "Quantum in me fuit" or "I did the best I could"
26. When someone is diagnosed I’d like to tell them: it's not the end of the world.
27. Something that has surprised me about living with an illness is: how much I can endure.
28. The nicest thing someone did for me when I wasn’t feeling well was: left a sweet note on my front door, and attached a spoon for me.
29. I’m involved with Invisible Illness Week because: I feel the need to bring awareness to how many people are affected.
30. The fact that you read this list makes me feel: honored.

Quantum in me fuit


Friday, September 10, 2010

The Good That Comes

It's easy to get sucked into the negative side of a life with status migrainous, and it's important to grasp hold of every good thing you can reach to balance things out. It's particularly easy around negative or depressing milestones to get sucked in. That's why I'm so thrilled that I have a good anniversary that comes around at roughly the same time as a bad one.

As of today, it's been two years since I was released from the hosptial's psych ward. I was admitted because the migraines were so bad that I was disassocitating and turning suicidal while not in control of my body. Not the type of thing you want to happen.

However, I found the strength to ask for, (read demand) help, and I finally got it. And it really did help. It was a total paradigm shift for me, to figure out that I could ask for help when something got too big for me to handle it on my own.

Before Sept. 10, 'o8 I'd had status migrainous for just under seven years, and I had never learned how to ask for help. Instead I had shut down my body and mind so that I wouldn't have to deal with the pain. In 'o8, I broke the cycle of hiding, and learned that it actually made me stronger if I asked for help than if I had just stayed in my shell.

So while I'm about to enter into my 10th year of status migrainous, I can remember Sept. 10, 'o8 as a time when I proved I was/am stronger than the pain, and that means the world to me.

Try and find something good to focus on this week!

Quantum in me fuit


Tuesday, August 24, 2010

A Little About History On The Author

I have never know a way of life that did not require pain. I have suffered from migraines since at least first grade, most likely since birth. I have had surgeries and other treatments, not to mention an entire range of doctors come and look at me. 
For the past nearly nine years, I have not had a single moment without pain, as I have Status Migrainous and Basilar Migraine. Pain is my constant companion, friend, and nightmare. There are times when life is good and I am able to do the things that make me happy. But there are also times when I am disabled by the chronic pain, and it is then that I become a different person. 
I'm slowly coming out of the shell I lived in for 3.5 years. I'm beginning to make friends and live life again. It's not easy, but I'm learning how to live with the pain.

I identify with the fabeled Jack from Jack and the Beanstalk. He and I have seen two very different worlds, and while each one is good, neither one alone can be the best.

When you're way up high and you're on your own
In a world like none that you've ever known
Where the sky is lead and the earth is stone
You're free to do whatever pleases you
Exploring things you'd never dare
'Cause you don't care....
And your heart is lead and your stomach stone
And you're really scared being all alone
And it's then that you miss all the things you've known
And the world you've left and the little you own
The fun is done...
And you think of all of the things you've seen
And you wish that you could live in between
And you're back again only different than before
After the sky

~excerpts from Stephen Sondheim's Giants in the Sky

I can't work a 'normal' job because of my migraines. I am, however, an aspiring children's and young adult author. When I can, I work on editing my novel, and am currently waiting for a response from a publisher about my children's book.

And now it's time for me to go lie down until my doctor's appointment this afternoon.

Quantum in me fuit,