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This is my journal of living with Migraine and other chronic illness. Trying to live well, to live a purposeful life, with chronic illness, since I don't get the choice of living one without it!

Great Poetry inspired by Pain

April 28th, 2009

I’m really impressed by the winning poems in this year’s Putting Our Heads Together Migraine and Headache Poetry Contest, over at My Migraine Connection.  I don’t impress that easily when it comes to poetry – these are an exceptionally well written bunch, lyrical, moving, interesting, sometimes funny, sometimes wacky.  I guess it’s only fair to let you know I have an honorable mention in there, but I’m not saying all this to boast.  I’m very happy to be included but I think mine is far from the best.

I’m in the midst of a not very creative Migraine at the moment – some Migraines leave me able to write eloquently and some leave me pretty wordless, you know? I guess it’s a question of which part of my brain the storm is passing over.  I’d love to be able to tell you more about what moves me in these poems, and why, but it’s beyond me right now.  Would you go read some, and come back and share your favorites with me?  I’m particularly fond of the fourth place entry, “Pain Breaks Like Teeth” by Kate Brady, which opens

Pain breaks like teeth into rice cakes all over the floor.  My pieces aren’t swept up because I haven’t cleaned in weeks.

Enjoy!

– Megan

Tags: migraine, poetry
Posted in Communicating, Weblogs | Comments (0)

MAGNUM – 15 years of Fighting for Migraineurs Rights

April 22nd, 2009

Coming up this Sunday, April 26th, at 4 pm Eastern time, I will be hosting the second of our monthly Managing Life with Migraine Teleconferences with Michael John Coleman, Co-Founder, President, and Executive Director of MAGNUM, the National Migraine Association.  The association was founded in 1994, and has been instrumental in many pieces of legislation that have made a difference to the lives of Migraineurs.  In their own words:

MAGNUM: Migraine Awareness Group: A National Understanding for Migraineurs, was created to bring public awareness utilizing the electronic, print and artistic mediums, to the fact that Migraine is a true biologic neurological disease, to assist Migraine sufferers, their families, and coworkers, and to help improve the quality of life of Migraine sufferers worldwide.

Michael John Coleman is one of MAGNUM’s Co-Founders, an award-winning photographer (though we can’t show you photos on the teleconference), and has been involved in many significant battles for Migraineurs in the past 15 years.  We’d love to have you join us on the teleconference.  The call is free but you must register to be on the call.  Go to Managing Life with Migraine Teleconferences to register.  If you already registered for last month’s teleconference there’s no need to register again.

– Megan Oltman

Tags: MAGNUM, managing life with migraine, migraine advocacy
Posted in Advocacy, Managing | Comments (4)

We Can Do Something About Pain Care Today

April 20th, 2009

Once again, there is an opportunity to take a little bitty action that makes a big difference.  There has been a National Pain Care Policy Act before Congress since 2003.  This may be the year at last, as it passed the House in March and is now in the Senate.  Pain is the most common reason that Americans access the health care system, yet there has been no consistent national standard for dealing with pain care.  This has great implications for all of us with chronic pain conditions, Migraine included.  The Alliance for Headache Disorders Advocacy has taken on passage of the National Pain Care Policy act as one of its goals – it will make a significant difference in the treatment we receive.

So, the time has come to email your senators and ask them to co-sponsor the National Pain Care Act.  It’s ridiculously easy.  The good folks at the AHDA have once again set it up so all you have to do is click, type in your name and address, add a few words of your own if you wish, and you’re done.

Please go over to the AHDA site and email your Senators today.  Less than five minutes, I promise, and you’ll be feeling no pain (at least, not from this).

– Megan Oltman

Tags: Alliance for Headache Disorders Advocacy, National Pain Care Policy Act, pain care
Posted in Advocacy, Current Affairs | Comments (0)

Sneezebushes and Sneezetrees

April 18th, 2009

Other people do not consult me about their landscaping.  That is one of the unfortunate facts of my life.  This is a spirea bush.  A most attractive shrub.  When it is blooming it has a lovely little cluster of white or purple flowers, like this:

They are very attractive.  The purple ones bloom from spring to fall and have very little smell.  The white ones bloom in spring and have an acrid smell that makes the inside of my nose tingle, and make me sneeze up a storm. I call them Sneezebushes.  I am allergic to them.  When I breathe their pollens for an extended period, I tend to get a Migraine.  Interestingly, Landscape America tells us

“Aspirin is the generic medical name for the chemical acetylsalicylic acid, a derivative of salicylic acid.  Compounds of salicylic acid are found in some plants, notably white willow and meadowsweet (Spirea ulmaria).  Acetyl- and spirea which inspired the name aspirin.”

I am anaphylactically allergic to drugs in the aspirin family! Coincidence? Hmmm…

Then there is the Bradford Pear. It is a lovely blooming, non-fruiting pear tree, much favored for landscaping along shopping streets.  Here is Witherspoon Street in Princeton, NJ, completely lined with Sneezetrees, oh I’m sorry, I mean Bradford Pears…  I don’t know if they are in any way related to spirea.  Spirea are in rose family and so are pear trees, but I am not allergic to roses or other blooming fruit trees.  The smell is similar, and the effect on me is the same, an acrid sensation in my nostrils, sneezing, and Migraine.

My neighbors across the street put in three lovely little Bradford pears in their front yard last spring. When we open the front door on a nice April Saturday like today our house fills with the scents.  Achoo! Ow! Achoo! Ow!  Me lying down with the Imitrex and the Benadryl, hoping to be on my feet later…  Well, the blooms will fall in a week or two, right?

– Megan

Spirea image courtesy of Di the Huntress; Single Bradford pear image courtesy of Deep Valley Tree Farm

Tags: allergies, Migraine triggers
Posted in Rant | Comments (2)

April Headache and Migraine Blog Carnival

April 14th, 2009

The April Headache & Migraine Disease Blog Carnival is posted at Somebody Heal Me.  Diana Lee created the carnival to provide headache patients and people who blog about headaches with opportunities to share on topics of interest and importance to us.

This month’s carnival had no set topic and garnered an interesting collection of posts.  There is a lot of good reading here.  Some of my favorites – James of Headache and Migraine News Blog gives us exciting news of a new upcoming Migraine drug.  Rosalind of Working with Chronic Illness makes some really insightful points about how to avoid and deal with errors at work resulting from your illness. Kelly of Fly with Hope has the inspiring idea of writing herself a letter to remind herself of hope when she’s in pain. And Rena of Dealing with Headaches – well, Rena, you know you always make me laugh, but this month I’ve got to say you win the Ewww award!

I don’t want to slight anyone – every entry is worth a read!  Enjoy.

– Megan

Tags: chronic illness, migraine, Weblogs
Posted in Weblogs | Comments (0)

Migraines, Travel, Social Life

April 13th, 2009

We had a nice four day trip over the weekend to visit friends in Boston. A wonderful family who lived in our town for two and a half years.  They were our around the corner neighbors, and our fourteen year-old sons are best friends.  They are warm and easy to be with.  It’s a six hour drive each way.  We were actually in Boston from about 7 pm Thursday until 1 pm Sunday.

It’s ridiculous how hard it is to plan for and face a simple weekend trip like that.  I needed medication refills and discovered various mistakes that had been made in the prescription that involved multiple phone calls and trips to the pharmacy.  I recently increased my Topamax dosage and I am experiencing once again the mental cloudiness I have had at each new dosage level – making it hard for me to stay focused on a task or remember what I need to do next in a sequence of tasks.  This is beginning to lift, but it’s not gone yet.

Of course I had to pack all my meds, for preventing Migraine, in case of migraine attack, all my supplements, my thyroid meds.  My husband and son had meds to pack.  My eighteen year-old daughter was staying behind to work and dog-sit, but we had to be sure she had food and instructions. My husband and I are both at rather crucial points in business and there were things that had to be finished before we could hit the road.  Our accountant called just before we were leaving with additional details needed for our taxes.

I get pretty stressed with highway driving, especially on high travel weekends like this one, especially in the high-speed, high-pressure, road-rage rampant, “I’m more important than you are and I own the road” Northeast (where I live). That kind of stress goes right into my neck muscles and can lead to headaches and Migraines.  We passed a couple of horrendous accidents on the way there.

I left without the spare pillows I usually bring – due to several injuries I sleep propped up so that I don’t ache so much I can’t sleep. I found myself a bit embarassed by my inability to find words and complete sentences in the morning and evening when my meds were strongest. And Saturday afternoon I passed on a trip to the Aquarium with the families, and lay down with a Zomig, a book, and eventually a nap, to get rid of a Migraine.

AND – you’ve listened to my litany of complaints, here’s my conclusion: I had a great time.  It was so nice to get away.  It was so lovely to spend time with friends.  It was worth the stress of driving.  So what if I had a Migraine – chances were way better than even I would have had one at home anyway, without the visit.  So what if I stumbled over words a little – entertaining though I may be, my conversation is not the only point of the visit (shocker, I know!).  We came back renewed and refreshed. Tired after our travel, yes, but it was so very worth it.

We don’t get out much. It’s hard to make plans when Migraine and other illness often comes along and changes them. Money has been tight. My house is not as clean and neat as I’d like it to be, so I don’t ask people over much. But it’s so important to be with people. Every little bit helps. True friends don’t love us for how perfect our housekeeping is or our speech is or any of that.

– Megan

Open door image courtesy of emdot/marya.

Tags: friendship, migraine, relationships
Posted in Managing, Travel | Comments (2)

How Do you Relax? (Is it Relaxing you?)

April 8th, 2009

I really do want to know. I’m very curious about this phenomenon – we seem to be so drawn to things that are fun, or enjoyable, or give us some kind of gratification, but don’t actually relax us. For instance (when in doubt, I’ll always tell one on myself) I am very drawn to playing Snood – a computer game that involves shooting down these silly faces with matching faces – lots of eye-hand coordination, speed, a danger-bar that raises the stress level, electronic music and noises, bright colors on a computer screen – Migraine hell, yes? Why would I want to do that? Is it relaxing? No! Fun? Yes!

Some people like roller coasters. Gut-wrenching fear. The sense you are about to die. The sensation of your heart about to burst from your chest (not really my cup of tea…). Is that relaxing? That’s a different issue, really. The endorphins your body releases after the ride, when it realizes you have survived, are probably what keeps you coming back. The endorphin rush is very sweet. But is it relaxing?

Now – a walk in the woods. A swim in the ocean, or a lake. A long gentle bike ride. Rocking on a porch swing on a breezy day. Meditating. Yoga. Deep breathing. Guided visualization. A really good laugh. A great talk with a friend. Loving and satisfying sex. A massage. A hot bath. Clearing your mind and practicing letting go. These things truly are relaxing.

When I am working, whether I am writing here on this site, creating more classes for you, working with coaching clients, or doing legal work, I enjoy what I am doing, and I can get into a zone where I just keep rolling and I don’t want to stop. I’ve learned to recognize when I need a break, and I know how important it is to relax. But I will tell you right here and now, it is not easy, even for me. It’s hard to break away. When we’re on a roll, we want to keep rolling. When we’re on the computer, we want to stay on the computer. But what our nervous systems need is for us to shift, to take a break, to practice relaxation.

Deliberate relaxation practice at least three times a week (preferably five) can reduce your Migraine triggerability. How does that work? You will be exercising your parasympathetic nervous system – strengthening your relaxation response. You develop your ability to relax, to release stress, turn off the pressure valve. Deep breathing and guided visualization are two great methods, and I use them in the BREESE relaxation teleclasses.  There’s more about the relaxation response in the Free my Brain Migraine Management Newsletter coming out this week, and if you’re not already receiving the newsletter you can sign up for it in the Six Migraine Keys box in the upper right corner of the page.

But I want you to know – I do my relaxation practice, as regularly as I can, and I take breaks and breathe, and take little walks, and do all those things I know I should, but it’s hard!  And I still like to do things that are fun, but not particularly relaxing.  I’m lucky – I get to lead relaxation classes, so I get a chance to relax with all of you.  What do you do to relax?

– Megan

Porch swing image courtesy of Elvissa.

Tags: relaxation practice, relaxation techniques
Posted in Managing, Tips & Techniques | Comments (3)

The MIDAS Touch

April 5th, 2009

I recently took a MIDAS (Migraine Disability Assessment) test, and the results were enlightening.   The MIDAS test was developed by Richard B. Lipton, MD, Professor of Neurology at the Albert Einstein College of Medicine, New York, NY, and Walter F. Stewart, MPH, PhD, Associate Professor of Epidemiology at Johns Hopkins University, Baltimore, MD.  It provides an objective measure of how much your Migraines disable you, or impair you from work and acitivities of daily life.  It is a useful test in several ways.  Many Migraine and headache specialists make use of it to determine how you are affected by Migraine disease, and to measure your progress in treatment.  The test is also useful if you need to build a body of evidence for a disability benefits application.  You can find and take the MIDAS test on line at the American Headache Society web site, Achenet.org.

In addition to being helpful in your treatment, the test may be helpful to you personally, in better understanding the impact of your Migraines.  The test has you look back over the past three months and count:

• the number of days you were unable to work,
• the number of days your work productivity was cut in half,
• the number of days you couldn’t do household activities,
• the number of days household activities were cut in half,
• and the number of days you couldn’t participate in family or social obligations,

due to Migraines.  Then it asks you for the number of days you had head pain, and the average severity of your head pain.  After you fill in all these numbers, the web site will calculate a score for you, which will indicate mild, moderate or severe disability due to Migraine disease.  Taking the test again on later occasions will provide an objective measure of how your treatment is working.

MIDAS is not brand-new, but my headache specialist does not use it so I had not taken it before.  I do, however, keep a very detailed diary, which is necessary to do this test.  If you haven’t kept track of how many Migraines you had, when, how severe they were and how they affected you, you won’t be able to complete the test.  Here at Free my Brain we will have a diary available for you soon.

What I learned for my self is that I am considered severely disabled by my Migraines.  This might surprise many of the people who know me, as I am up and functioning most days.  I have most of my Migraines in the evenings.  This means, however, that I have virtually no life when it comes to socializing and leisure time, and it also means that I must constantly choose between work and family, work and household tasks.  I have to earn a living, which is a struggle, so I don’t have as much time with family as I would like, very little time with friends, and as for household tasks, ha!  Reading my MIDAS results, you could predict the layer of dust in my house!

I suppose the test confirmed things I already knew.  It is a kind of validation, though, and it helps me focus on what I need to work on.  I need to be vigilant about my lifestyle – getting enough rest, doing my relaxation practice every day, working with my doctor to find the right preventive regimen for me. I need to maximize my health so I can do my work, be with my family, and then if I have a little energy left worry about the house! The MIDAS touch? Keeping that focus is pure gold!

– Megan

Tags: American Headache Society, disability, MIDAS, migraine diary, Migraine disability
Posted in Managing, Medicine | Comments (0)

Only a Migraineur could Understand…

April 1st, 2009

Last year for April Fool’s Day I hosted the Weirdest Migraine Triggers Ever contest. We had some doozies submitted – the winning entries are worth a read.  Weirdest Migraine Trigger Winners.  I’m not feeling very ambitious today – I am in post-drome from a major two day Migraine, so I don’t know yet if this will be a contest or what.  But it’s a question, anyway.  Please respond!  Oh, and by the way – gross-out alert (or maybe just t.m.i.) – not for the squeamish.

How would you complete the sentence: only a Migraineur could understand ___________.

Here’s my example.  I was terribly nauseous all day yesterday, and at one point I got up and scrubbed out the toilet bowl. This struck me as a truly insane act, but completely necessary nonetheless. I had pounding headpain and excruciating nausea, but the bathroom hadn’t been cleaned in a while and I thought, if I’m going to be on my knees in front of this bowl, at least it’s going to smell clean.

“Only a Migraineur could understand getting up with a pounding head and heaving stomach to scrub the toilet bowl so you can upchuck into a clean-smelling toilet.”

Come on, bring it on, what else could only a Migraineur understand?

– Megan

By the way, I’m sure there are other chronically ill folks who could understand this one as well… you can fill in your illness here if you like.

Cleaning supplies image courtesy of Collin Anderson.

Tags: April Fool's, migraine, nausea
Posted in Silliness | Comments (12)

Managing Life with Migraine – Calls with the Experts

March 27th, 2009

If you’ve read my blog (and I know you’ve read it cover to cover, all 140+ posts, right? oh, well…) you may know something of my story. I’ve been working from home since my daughter was six months old, almost 18 years ago, when I discovered that my legal job wouldn’t allow me to return to work part time.  Three and a half years later my son was born and that’s when my odyssey with chronic illness began.  I learned a lot about managing life, with a business, with children, and with chronic illness.  Eventually I put aside my legal practice and became trained as a professional coach.

After 7 years of coaching I had one of those aha moments where I realized I had a lot to offer, to help Migraine sufferers and other chronically ill people learn to manage their lives with their illnesses, to live the best, most purposeful and rewarding lives they can, to build businesses or stay employed if possible, to minimize the impact of their disease and maximize their joy. I helped a few face-to-face clients this way, but started exploring the internet as a way to get more help to more people, more affordably.  That’s why I’m here.  That’s why this blog, this site, the relaxation teleclasses and recordings, and some more products to help you coming soon…

In the course of starting this, of creating this thing called Migraine Management Coaching, I have gotten to know all these wonderful people who are committed to making a difference for people with Migraine and chronic illness. First and foremost, my dear friend Teri Robert who has taught so many people how to be an informed medical consumer and get the care you need. And so the idea of the Managing Life with Migraine free teleconferences was born.  We’re starting in two days , on Sunday March 29th, and continuing on the last Sunday of each month, 4 PM eastern time, talking with a series of experts on topics that will help us manage our lives with Migraine!

Register now for our first call on Sunday, March 29th with Teri Robert – Writer, Author of Living Well with Migraine Disease and Headaches; Patient Advocate; Lead Expert, My Migraine Connection.

Topic: Taking Charge of Our Migraine Care – What Do We Need to Know and Do to Advocate for Ourselves and Be Informed Medical Consumers.

There is no charge for the call, but you need to register to get the call details!  You can Register Here.

– Megan Oltman

Tags: disease management, managing life with migraine
Posted in Advocacy, Managing | Comments (5)