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Posts Tagged ‘Migraine disease’

Telling the Truth about Your Disease

January 15th, 2009

Here’s a New Year’s Resolution for you: Tell the truth about your disease this year! How many of us are walking around in a state of denial, not having told the truth to ourselves about our disease, or about what we need to do to manage it? How many of us are in a state of conflict, hurt feelings, or even losing relationships with the people in our lives who don’t know the truth about our disease either?

What do I mean by telling the truth? It may be that many of us would be better off if we didn’t have to work, or care of our families, if someone else would care for us, or pay the bills, but we just don’t live in that reality. Telling the truth doesn’t mean you have to deny your reality, or not deal with it. Quite the contrary, your reality may be that you have to work, and care for your family, but you can’t care for your home to the standards you have always had, or you can’t work the kind of hours you once expected of yourself, or you can’t micro-manage your family members but have to allow them to make mistakes and muddle through. There may be many things that you have to let slide, and telling the truth may involve reminding yourself that if you exacerbate your disease through overwork, lack of rest, not caring for yourself, then none of the other things you value will be possible. For many of us, the truth is we must put ourselves first, and that isn’t some kind of nasty self-indulgence, it’s not “No I can’t take care of my child I have to watch tv and eat these bon-bons,” it’s “I must care for my well-being or there will be none left of me to care for others.” It means put on your oxygen mask first on the air-plane or you will both be dead!

Denial is what has us clean one more thing instead of resting, or ignore the migraine twinges instead of taking the medication to treat early. Denial is what has us try to be super-women and men, has us go on hosting huge parties in order to not disappoint the family, or do whatever we believe is expected of us, at the expense of our well-being.  Denial is lying to ourselves about our own disease.

This may sound harsh, and believe me if you find yourself in a state of denial you have all my sympathy. I find myself there from time to time as well. It is human, and it will happen. The key is to practice telling the truth, to have it become a habit. You may not want to answer “How are you?” with complete truth in every situation – there may be reasons not to do that at work or in some social situations. But practice telling the truth about who you are to yourself, and to someone! Come here and tell it to me, in a comment. Sign up for the e-course The Six Keys to Manage Your Life With Migraine (in the upper right corner of the page) and tell it to me there. Register for a relaxation or support teleclass and talk about it there. Go to a Migraine Forum and talk about it. Find a friend or two you can tell. Write it in a journal, or in your own blog. But practice telling the truth.

And remember that there are people in your life who need to know the truth about your disease as well. You may want to practice telling that truth to yourself first, but your spouse or significant other, your parents or children or siblings or best friends, need to know some basics.

• They need to know if you are a Migraineur that you have a neurological disease which you cannot control.
• That when you have a Migraine attack you experience extreme pain, nausea, dizziness, whatever the particular symptoms are for you, and that you must treat it and avoid light, sound and stimulation until it passes.
• They must know something of the dangers of leaving a Migraine untreated.
• And they need to know that you are not doing this on purpose, to avoid being with them, or work, or obligations, that you wish you didn’t have this disease, that you appreciate everything they do for you, and that you need their love and help and support.

Here’s a link to a great letter Teri Robert wrote to share with the people in your life to help them understand Migraine disease. I can’t promise you that every person in your life will understand and support you. If you can keep the conversation about your disease and asking for their help and understanding, and keep any hurt or accusations about past actions out of it, most people are more receptive. I can promise you, though, that it is important to take this step. More hurt feelings and lost relationships come about from not trying, from failing to communicate, from wishing, hoping and expecting the other person to understand. There’s no way around communicating, scary though that may be.  If I can support you, please let me know.

– Megan

Heads together image courtesy of Vera & Jean-Christophe; conversation image courtesy of John Wigham.

Tags: Communicating, denial, Migraine disease, self care, telling the truth
Posted in Communicating, Musings, Tips & Techniques | Comments (2)

It’s Blog Carnival Time Again – What Keeps You Going When You’re Suffering.

January 14th, 2009

Kudos to Diana Lee who got her act together in the New Year to get the Blog Carnival out right on time – yours truly is still adjusting to a new schedule and not even getting over here to post very often, so you won’t see an entry from me in this month’s carnival! But it’s a great topic – What Keeps You Going When You’re Suffering. So pleaase head on over to Somebody Heal Me for the January edition of the Headache & Migraine Disease Blog Carnival for some great reading to keep you going. I will be heading over myself for some reads on such topics as yawning, sleeping it off, revenge, and new Migraine drugs, as well as other coping strategies! See you there!

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month’s carnival for a collection of informative entries on the theme of What Keeps You Going When You’re Suffering.

– Megan

Tags: headache, Migraine disease, Weblogs
Posted in Managing, Tips & Techniques, Weblogs | Comments (0)

Keep Working, Girlfriend! Book Tour

November 1st, 2008

One of the most important issues for any of us facing chronic illness is the issue of staying employed, or
how to support ourselves while managing our illness.  It is an issue we will be exploring at greater length in the coming months here at Free my Brain as we look at the merits and drawbacks of keeping a job, finding home-based employment, starting a business, or not working at all, when managing life with Migraine disease.  Rosalind Joffe, Chronic Illness Coach, specializes in helping women with autoimmune diseases keep on working!

I’m participating in Rosalind’s Virtual Book Tour, along with other chronic illness bloggers, to bring attention to this important new book: Women, Work and Autoimmune Disease: Keep Working, Girlfriend! From Nov. 3 – Nov. 21,  the other bloggers and I will be reviewing the book,
interviewing the author, hosting guest posts, and bringing attention to this important issue.  Rosalind will be writing a guest post here on Free my Brain on Tuesday, November 18.  First stop on the tour will be at Rhymes with Migraine on November 3rd.  In the meantime, please visit Keep Working Girlfriend for a list of the other bloggers/stops on the tour.  You can also check out the book itself, which is described as a “voice of warmth, wisdom, understanding, and sisterhood,“ encouraging “women with chronic illness to stay as successfully employed as possible.” Click on the image of the book at the right to read more about it or purchase through Amazon.com.

– Megan

Takes a licking but keeps on working!

Tags: autoimmune disease, chronic illness, Migraine disease, Rosalind Joffe, women, work
Posted in Books | Comments (0)

Migraine News from Between my Ears

October 17th, 2008

A funny thing happens when you start blogging.  There is this little bit of celebrity that arises.  I can admit that like many people I once secretly wanted to be famous.  My friend Laura told me in High School that she pictured me as a kind of revolutionary leader, with thousands chanting my name.  If that had ever been my ambition, I’d have to say that I failed miserably.  I’ve made it through nearly 50 years of life and I don’t think even dozens have ever chanted my name.  Not at the same time, anyway.

But I digress.  I started this blog for a few reasons.  I wanted a place to share my thoughts on living with Migraine disease, and the other chronic illnesses I live with.  I particularly wanted to share my hope and strength, as someone who has come a long way in managing a life with these conditions.  I wanted to join the warm, intelligent, funny and committed community of Migraine and headache
bloggers and advocates who are making such a difference in the lives of patients and in advancing the understanding of this disease.  The big reason was this moment of truth I had almost a year ago, when I realized that my chronic illnesses are not just an impediment in my life; they
are an opportunity to
share my professional tools and skills, and the
wisdom I have accumulated, to help others manage their lives with
Migraine.  I wrote a bit more about that a few months back in My Migraine Story.

I didn’t really start the blog to keep the world posted on the doings in my own life.  I tell a lot of stories, partly because I come from a family of storytellers,and partly because I’ve always made points (with clients and anyone who will listen) by telling personal stories, about things that happen and lessons I learn.  So it’s been a lot of fun doing that here.  And lo and behold, I learn that people are actually following (to some extent) what’s going on in my life.  Little old me, Megan, Rachel & Adam’s Mom, Danny’s wife, Joan & Jim’s daughter, Jon & Ellen’s sister, the lady in the house on the corner by the field, the little red-head… that one.  It’s a small and gentle sort of celebrity, but I find when I don’t follow up on things I’ve mentioned, sure enough, you’re actually listening, and sometimes you ask.

So the news between my ears…

• I’m looking for an allergist to determine whether I should even pursue this Medication Allergy challenge test idea, because as my friend Medieval Writer of Sparkling with Crystals reminds me, anaphylactic shock can potentially kill you faster than a doctor can save you, even in the hospital with a crash cart standing by.  
• I’m spending a little time, just a few calls here and there, my head and energy levels allowing, volunteering for Barack Obama’s campaign.  Please get out and vote for better health care!  You don’t have to chance feeling well enough on election day; you can vote early in many states – go to Rock the Vote to check your state’s rules.
• My difficulties with the Topamax are settling down.  We’ll see what happens when I go back to Dr. G and increase the dose next week!  Tingling has disappeared and the cognitive effects are fading.  An unexpected benefit seems to that it is functioning as an anti-anxiety med for me! I am a pretty
  anxious person by nature, and I tend to obsess on things, but it seems like the slight loss of focus I have on the Topamax means I can’t focus on something long enough to really obsess and get anxious! Kind of weird – but I’m just not worrying as much!  MaxJerz of Rhymes with Migraine pointed me towards this piece on Health Central’s Anxiety Connection indicating that Topamax is sometimes prescribed in combination with other drugs to treat anxiety.  Who knew?  (Well obviously, someone did, but not me!)
• I don’t think the Topamax is having a major inhibiting effect on my Migraines yet, though I haven’t had a really bad one in the month I’ve been on it.  I am doing a very slow titration to minimize side effects and will probably increase the dosage when I see my HA specialist next week.  Judith Warner wrote a pretty good piece about her difficulties with Topamax (not named, but quite identifiable) in the NYTimes today, but they didn’t publish my comment.  I am trying not to take it personally!
• Our Health Insurance Hassles and Headaches may turn out to be a blessing in disguise, NO
  thanks to Oxford (who I will still refer to as the insurer from hell) because it looks like there are a range of better, more affordable options out there for us.  I got a lot of info that may help others, too, and will try to do a whole post on it soon.  For others who are struggling with insurance, if you have children, be sure to check out your state’s insurance coverage for children.  Some states now extend that to parents of children 18 and under.  I know this is no help for childless people or those whose kids are grown; you deserve health insurance too!
• In the meantime, I seem to be developing a lot of Acephalgic, or Silent, Migraines (phono & photo-phobia, dizziness, without head-pain) in the evenings.  It’s better than having the head pain, but still means I have to retreat to my cave (i.e. bedroom) for the evening and can’t hang out with the family much.  Bummer.  More to talk to Dr. G about next week.
• And, (a drumroll please…) my biggest news… by next week (I hope) I should be launching my new website, containing this blog and other resources for Migraineurs, including relaxation teleclasses – stay tuned for more!  Hard at work on it now – soft greens and yellows – looking pretty – can’t wait…

Hope your heads treat you well and you have an AWAP weekend!
– Megan Oltman

Tags: acephalgic Migraine, Adam Oltman Porcher, Adam Porcher, chronic illness, health insurance, medication allergies, Migraine disease, Topamax, vote
Posted in Communicating, Current Affairs, Musings, Weblogs | Comments (4)

Chronically Ill? What Are You Doing for Fun?

September 22nd, 2008

Fun?  Megan, come on, what do you mean fun?  I get up, I take meds, I go to work, I try to make it through the day, I come home in pain and try to do the minimum I can to get by, feeding myself, family, pets, doing laundry, paying the bills, I collapse as soon as I can.

Fun?  Everything I used to do for fun is gone – I can’t… drink, smoke, go out in the sun, exercise, go to rock concerts, go to noisy/smoky bars… fill in the blanks.

Fun?  I can’t afford to have fun.  My money all goes to doctor bills, medications, co-pays, insurance premiums…

Fun?  Look, I can’t have fun when my basic responsibilities aren’t being handled.  I’ll have some fun after I’ve felt well enough to finish the taxes, clean the house, mow the lawn…

Have I covered everything?  Any other objections you can think of?  I want you to know I have lived my life at times inside of every one of those objections.  Who has been my biggest killjoy?  Not Migraine disease, chronic fatigue, sinus infections, nasty bosses, demanding clients or disbelieving relatives, but little old me.  My own biggest Killjoy.

But I am taking a stand for Joy, alive and well.  This is my life.  Now.  Imperfect as it is.  If I wait to
get everything done first and then have fun, two things will happen.  I will never get it all done, and I will never have any fun.

Do I want this on my tombstone:  Got it all done?  By the way, even if I want it, it’s never going to happen.  As fast as I can do something, no, even faster, the more stuff to do gnomes are creating more stuff to do.

And even if I give up on trying to get it all done, I also have to give up that I will have fun when I feel better.  What if I don’t feel better?  Sorry guys, but what if this is as good as it gets?  Don’t stop hoping and working and fighting, but I could die tomorrow.  This is my life.  Now.

So what do you do for fun?

What gets you up in the morning?

What do you look forward to?

Your life is happening now, imperfect as it is.

What restores you, restores your perspective, where is your creativity?

Laugh.  Play.  Laugh some more.

I’m crocheting a granny square scarf.  Kind of silly and retro-60’s but I enjoy it.  I am clearing my front porch little by little preparatory to stripping off the ratty old indoor-outdoor carpeting and painting it. I’m walking in the park every day I feel well enough.  Sharing books to read with my kids & husband.  Taking DVDs out of the library.  Mostly I’m concentrating on finding fun things for when I’m sick or my head hurts, and taking time for fun on the weekends, whether or not we’ve gotten through our house projects agenda.  And making plans with friends and family, not worrying whether we might have to cancel them.  Making them anyway.

– Megan

Tags: chronic fatigue syndrome, chronic illness, creativity, fun, joy, Migraine disease, sinus infection
Posted in Managing | Comments (5)

Between a Rock and a Hard Place – How do We Choose?

September 19th, 2008

The first in a series of posts on Migraineurs making choices for our health care and our lives.

How do we choose? We are faced with choices on a daily basis. We lose sleep over them; they feel momentous, life-changing.  Rarely are they an Indiana Jones moment:

1. if I step on the wrong step it will crumble below me and hurl me into the rat/snake/cockroach infested pit, or
2. if I stake all on drinking from the gold cup my eyeballs will melt and I will desiccate into a human husk, so that the 2000 year-old crusader can say “he chose unwisely.”

Most of our choices change our lives more gradually!

For those of us with Migraine disease and chronic illness, choices often revolve around

1. what treatments to try, and
2. how to manage to make our living.

Most choices in life are reversible; we can change our minds, have a chance to learn from our mistakes.  Usually there is no one clear right choice.  In medical situations we often wish there was one.  How about the doctor coming to us and saying, “Well, Ms. So and So, here’s the choice

1. If you take this course of treatment it will cost you $2500 and you will feel worse for 2 months, 3 days and 16 hours, but then you will lose 30 pounds, become a natural blond, your Migraines will cease forever and you will never age another day.

2. On the other hand if you don’t take the course of treatment your fingers will gradually turn to pretzel sticks and crumble away, your brain will become a giant chicken heart and eat Philadelphia, your best friend will never speak to you again, and you will have a Migraine every day forever.”

I don’t know about you, but I’d go for the treatment.  And I don’t even want to be a blond!

Okay, I’m being extreme.  I hope I didn’t lose you there in all my silliness; there really is a point.  It is rarely given to us to know whether we are making the right choice, before, during, or after.  We have to weigh our options, but then we just have to choose.

Before I had my first child I fell and herniated a disk in my low back, causing two years of back pain.  Then I had a difficult labor with an erratic pattern of contractions, wearing me out without making progress.  After 18 hours of labor, I chose to use pitocin, a synthetic hormone, to stimulate the labor, and the pitocin made the contractions strong and painful enough that I felt I needed anesthesia.  I had to choose between taking pain-killers and having an epidural (where anesthetic would be injected into the dura, or sack, around my spine).  With an epidural there was a chance that my disk problem could become worse, even to the point of permanent back pain.  With pain-killers, if I ended up with a cesarian section, I would need general anesthesia.  The choice was to be awake for my daughter’s birth and risk disabling back pain, or to risk being knocked out for her birth with no back complications.  I chose the epidural.  I did have a cesarian; I was awake; and I did not develop any back problems from it.

My husband and I will never forget when I was lying in the birthing chair, pitocin-induced contractions sending me into ever higher spikes of pain and exertion, trying to make a choice in the panting moments between.  We were 31 years old, and we felt like we became adults in that moment.  If I had ended up with disabling back pain, I don’t know if I would have said it was the right choice.  To be awake and hold Rachel in the moment after she came into the world was a joy I did not want to miss.  That was what I chose.  But who can say if it was the right choice?

The choice I made recently was to start on Migraine preventive medication.  I spent at least 6 months making that choice.  It was a choice I was considering for at least 4 years.  Sometimes a choice needs to stew on the back burner of our minds.  In that 6 months I:
•    Found a doctor I could trust (which took several tries and months of waiting for appointments);
•    Did a lot of on-line research, and read about other’s experiences with preventives;
•    Recommitted to my meditation and relaxation program;
•    Tried magnesium and B2 supplements;
•    Tracked my Migraine numbers; and
•    Talked about the decision with my friends on and off line, my husband, my family.

Eventually, the choice just felt clear.

I will be returning to this subject of choosing in several more posts in the near future – if you’ve read all the way down here I’ve kept you too long already!  What I’ll leave you with today is to say that those times when you must make that life-changing decision right now are rare.  We usually have some time to make our choices.  Use that time.  Let things simmer on the back burner.  Let your subconscious mind do its job.  Will you make the right choice?  Nobody knows.  But you can make the choice with much less anxiety in the meantime.

– Megan Oltman

Pretzel sticks image coutesy of Windell Oskay; image of window at Mesa Verde is by me to illustrate being between a rock and a hard place – Mesa Verde is all rocks & hard places.  And amazing.

Tags: childbirth, chronic illness, Indiana Jones, making choices, Migraine disease, Migraine treatment, pitocin
Posted in Managing, Medicine, Silliness | Comments (7)

How Am I? As Well As Possible, Thank You!

September 13th, 2008

AWAP has been making the rounds on some of the Migraine forums lately – so I googled it and got many choices:

Abused Women’s Advocacy Project
Any Word Any Page
Aftermarket Wholesale Autobody Parts
Animal Welfare Audit Program
All worthy choices, I’m sure, but…

I’m talking about As Well As Possible.  A wish for the chronically ill – not, “have a great day!”  But “have an AWAP day!”  Not “I’m feeling fine!”  But “I’m feeling AWAP!”  I sign off on notes and emails to my chronically ill clients and friends, “wishing you pain-free days and nights.”  It is my wish for them, my earnest wish, and it is my wish for myself.  But sometimes it’s unrealistic.  We must walk a fine line between powerful hope and attainable goals.  Between reaching for the stars, setting our sights high, and accepting the reality of our lives.  I work and strive for the day when my Migraines, and yours, are a thing of the past.  But if I expect that to be today, I may be setting us both up for disappointment.

When I was little, I was taught that when people asked how I am, I was to say, “Fine thank you, how are you?”  The explanation for that stock answer is that people are asking in order to be polite, and they don’t really want to know! Is that true?  Sometimes it is.  Every person I encounter in business, every acquaintance I run into in the grocery store, does not necessarily want to hear the details of my illnesses.  I don’t necessarily want to share and go into it with all of them either.  So what do I say?  I try to avoid saying “fine.”  I often say I’m okay.  Or not bad.  On those occasions when I feel great, I say I feel great.  (Hey, it does happen!)  But if I say I’m fine when I’m not, I’m perpetuating the invisibility of my illness.

With people in my life, I try to strike a balance between being real and being upbeat.

• Why be real? Because the people that care about me do want to know and because I want them to know; they are part of my support system.

• Why be upbeat?  Because I don’t want them to worry and because the more upbeat I am, the better my life is.

When we live with chronic illness it is very important to enjoy as much as we can of life.  To find the joy where we can.  And so for me to be AWAP means that I am living the best I can today, maintaining a sense of humor, being productive where I can, having as much fun as I can.  It means that I may be chronically ill but I am not overcome by it.

Sometimes my friends and relatives say, “How’s your head?” or “Having any Migraines lately?” or even “I hope you haven’t had any of those Migraines,” or “Migraines better?”  Of course people want me to be better.  I want to be better too.  When a friend is ill, we want them better.  What else can we wish them?  So I try to find an answer that acknowledges their caring, and acknowledges my reality.  Today I am As Well As Possible.  I am not in constant pain.  The on and off Migraines I’ve been having for weeks are off at the moment.  I have some energy and I am getting some things done.  My dishwasher is fixed.  My kids make me laugh.  The field is full of deep yellow goldenrod and deep purple asters.  I am grateful for my life.  AWAP

– Megan Oltman

Tags: chronic illness, invisilbe illness, Migraine disease
Posted in Advocacy, Communicating, Managing | Comments (8)

Blog Carnival – Improving Doctor Patient Communication

September 9th, 2008

Just in time for my Migraine specialist visit next Tuesday, Diana Lee has posted the September Headache Blog Carnival – Tips for Improving Doctor Patient Communication over at Somebody Heal Me.  I’m going to have a lot of reading to do!

Generally speaking, a blog carnival is a collection of links to a
variety of a blogs on a central topic. The Headache & Migraine Disease Blog
Carnival has been created to provide both headache and migraine
disease patients and people who blog about headache disorders with unique
opportunities to share ideas on topics of particular interest and importance to
us. Visit the link to this month’s carnival for a collection of
informative entries on improving doctor patient communication.

– Megan Oltman

Tags: blog carnival, doctor/patient communication, headache, Migraine disease
Posted in Medicine, Weblogs | Comments (0)

Blogging for Invisible Illness Awareness Week

August 31st, 2008

Coming soon – I will be doing a post on Migraine disease as an invisible illness for Invisible Illness Awareness Week, Sept 8-14, 2008.  Please visit the Invisible Illness Awareness Week Blog for lots of great posts on what it means to have an invisible illness – one that effects your life and abilities, that others cannot see.  I’ll be posting on the topic on September 8, along with lots of other bloggers on that day.  If you’d like to join in, visit the blog link above.

What can we do about our invisible illness?  Nancy Bonk had the great idea of wearing a big bandaid across our foreheads – to make our disease visible.  I’m thinking maybe a baseball cap with a bandaid embroidered right across the front – “Migraine Disease and Headache Disorders – Invisible No More.”   What do you think?  Would you wear one?

– Megan

Tags: chronic illness, headache disorders, invisible illness, Migraine disease
Posted in Advocacy, Weblogs | Comments (5)

August Blog Carnival on Dealing with Those who Don’t “Get It”

August 18th, 2008

August Headache Blog Carnival.  Slow and steady wins the race?  I’m a week behind here, but it’s not too late for you to go read lots of good blog posts on the topic of “Dealing With People Who Don’t ‘Get’
It.”  It’s posted over at Diana Lee’s Somebody Heal Me.  Many thanks to Diana for another great collection of blog posts.  I’m particularly partial to James Cottrill’s “How to Introduce a Migraine.”  Try out “The World Health Organization says I have one of the world’s top 20 disabilities.  Guess which one!”  

Generally speaking, a blog carnival is a collection of links to a
variety of a blogs on a central topic. The Headache & Migraine Disease Blog
Carnival has been created to provide both headache and migraine
disease patients and people who blog about headache disorders with unique
opportunities to share ideas on topics of particular interest and importance to
us. Visit the link to this month’s carnival for a collection of
informative entries on basic strategies for coping with migraines and
headaches.

Entries for the September 2008 Headache & Migraine Disease Blog Carnival on the theme of “Tips on Improving Doctor & Patient Relationships“ are due by the end of the day on Friday, September 5th.particularly useful, educational or inspirational for headache and migraine sufferers are also welcome. Posts may be submitted through the form on the carnival website.

Posts that relate to the September carnival’s theme will receive preference. Entries on topics that are

Tags: Migraine disease, Weblogs
Posted in Communicating, Weblogs | Comments (0)