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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!

Health Insurance Headaches

October 8th, 2008

Warning – Full blown rant ahead.  I am so upset I can hardly stand it.  I think my head may explode.  I know I have criticized the media for using Migraine loosely to describe a hassle, but I’m using it literally here.  My health insurance company, which is supposed to guard and foster my health, is about to give me a bona fide Migraine!  Adrenaline triggered, high blood pressure triggered, crying triggered, you name it.  And then they won’t want to pay for my medication.

I just received a notice that as of November 1, my health insurance premiums will go up by over 60%.  I receive group insurance through a professional association, and so I am one of those self-employed small business owners who is paying for my own premiums.  These are the group rates, mind you, if I tried to get my own insurance outside the group the premiums would be even higher.  Our health care is already the one of the largest costs in our budget, after shelter.  Higher than utilities, auto fuel, higher than food.  The monthly premium for our family of four will go up about $800, to over $2000.  And that’s just the beginning.  We already have:

• a $30 co-pay for doctor visits;
• a $50 specialist co-pay (“specialist” includes physical therapy for headache prevention – $50 out of pocket every time I go – my neurologist wants me going twice a week, I manage twice a month at those rates);
• most of the medications our family uses are considered “Tier 3” and have a $50 co-pay as well, so that’s a good $400 at the pharmacy every month;
• we have a $2000 deductible for out of network doctors (and we do use some of the same doctors who we like and trust and have used for years – silly us – so picky, huh?);
• after we’ve forked out that $2000 deductible, we have a 30% co-pay for out-of-network; and
• all claims must be submitted in 90 days or they are rejected.

That last is a doozy – take someone who is chronically ill and has trouble keeping up with paperwork, and you have a perfect formula to never have to pay on some large proportion of their claims.  Every previous insurance company I’ve had gave you 6 months to a year to submit claims.

Oh, and I almost forgot.  This company routinely loses about 1/3 of everything I send them.  So I have to keep to a very strict schedule to get everything in, then I send the claims, get nothing back, call them, they have no record, and they tell me, “Oh, if our scanner can’t read it, it’s destroyed.”  Destroyed.  I pay these people over $15,000 a year, soon to be over $24,000 and they destroy my paperwork?  Then I have to dig out my copies, send another set with a cover letter, and guess what, they send half of those back saying they weren’t submitted within 90 days.

To all the costs above, let’s add that I spend a good 2 days of my time every other month dealing with my health insurance claims, mostly with their screw-ups, uncompensated, of course, taking time away from earning my living.

I’m naming names here.  It’s Oxford Health Insurance, a United Healthcare Company.  They grant me the privilege of paying them an additional 60% for this abuse starting next month.  The reason?  Our group has a higher than average rate of claim submission!  Aha!  So, let’s analyze this – first of all, this is a group of coaches, whose job is to get people organized and on track to achieve their goals – maybe we have a higher than average ability to actually find our way through the impossible obstacle course that Oxford has set up to keep people from submitting claims!

But then, remind me, what’s the insurance for?  Call me naive, I thought it was there so I could afford health care!  I didn’t realize it was for the profit of the insurance company, first, foremost, and exclusively!  I’ve got no problem with business, I’m in business myself, but I do have a problem with the profit motive here, where it’s destroying the very purpose of the product!  Dare I suggest a single-payer system?  This is not auto insurance.  You raise rates on bad drivers, to give people an incentive to be good drivers.  So you raise rates on sick people to do what?  Punish them for being sick?  It is wrong to refuse insurance for pre-existing conditions.  It is also wrong to make insurance unaffordable for people who happen to use it.  That’s just a sneaky way to try not to cover conditions whether pre-existing or new.

A few days ago I said I would be non-partisan in this blog, and I don’t want to alienate anyone.  Please feel free to come here for help and support and ideas about managing life with Migraines regardless of your politics.  But I’m sorry, I can’t stay neutral here.  We have a chance to finally make a difference with our votes, a difference we sorely need.  McCain is proposing a $5000 tax credit to go straight to the insurance companies.  That won’t even pay for this premium increase, let alone make me any better off.  Does Oxford deserve even more of my money after all they already manage to take?  McCain is proposing deregulating health insurance further and encouraging more competition, letting the market take care of it.  The market is taking care of it by raising my health insurance premiums by over $9000 a year, because I have the gall to actually use my insurance!  What exactly is my family supposed to give up to pay for our health care?  Food?  Heat?

We need comprehensive, affordable health care available to all of us.  We need insurers to give sick people coverage without penalizing them.  We need this desperately.  People are being driven into ill health and poverty in this country by lack of coverage.  Barack Obama’s health care plan goes a long way down the road towards the coverage we need.  I need his plan now.  I think we all do.

– Megan Oltman

Exploding head courtesy of Alexander Iezzi.

Tags: affordable healthcare, Barack Obama, health insurance, healthcare, migraine
Posted in Advocacy, Rant | Comments (4)

Topamax Trials

October 8th, 2008

Just a quick update on my trials of/on Topamax.  No tribulations so far, knock wood (picture me
knocking on my head.)  I’ve just finished my third week on the minimum dosage.  This is too soon to tell whether it is working as a preventive.  I have had 5 Migraines in those 3 weeks – which is on the low side of average for me, but three weeks is not a good sample – any given three week period could be better or worse.  More to the point I may need a higher dosage for full effectiveness, and the medication takes some time to build up in the system.

Topamax is an anti-seizure medication, originally developed for the treatment of epilepsy.  Its Migraine preventive effect was discovered in some epileptic patients who were also Migraineurs.  It is currently one of very few medications actually approved by the FDA for Migraine prevention, all of them originally developed for other purposes.  There are 100 other medications that have been effectively used to prevent Migraines; Topamax is not the only game in town.  It may be the first some doctors try, since it is fairly well known, but unfortunately also has a high side-effect profile.  For people who are sensitive to medications, as are many Migraineurs, this is a dilemma.

Typically people feel tingling in their fingers and toes, less often in the lips and other places.  I emailed my doctor after about a week on the stuff when I was having intense itchy tingling in my lips and nose, tongue and TEETH (who ever heard of itching teeth?),
top of my scalp, behind my ears, my kneecaps, elbows, ankles, tops of
my fingers, outsides of my thighs, shoulder blades, upper eyelids. It
kept waking me up one night.  I was worried that this might be an allergic reaction.  Dr. G emailed back that unless there was a rash, it was probably not a problem.  I had no rash and the tingling disappeared the next day.

The other side effect I was most concerned about was mental cloudiness.  Some people have reported so much mental fog and forgetfulness that the drug has earned the nick-name Dopamax!  I’ve had a little trouble with finding the right words, but that seems to be passing.  I’ve found that my ability to multi-task, or keep a sequence in my mind is somewhat impaired.  I have to concentrate harder, write more lists since my ability to make a mental list is less than usual.

I’ve been pretty sparse with the posts here the last few weeks and I put that down to adjusting to the new medication.  I am lucky that I’m not spacier still.  After nearly 50 years you get used to the way your brain works, and to find your thinking change is a big adjustment.  It’s like re-routing around road work.  I’ve always had a good internal GPS system, but these days I have to pull out a map.  And check it again every few minutes.

– Megan

Block head image courtesy of Stefan; road work image courtesy of Hubbers.

Tags: mental cloudiness, Migraine preventive medication, Topamax
Posted in Medicine, Musings | Comments (2)

Why Do We Try to Get Better? Living Inside a Goal.

October 6th, 2008

What are we getting better for?  What are we here for?  I realize these are big questions and challenging even for minds that aren’t screaming with pain, let alone those that cope with frequent Migraines.  They are central questions to creating and sustaining the will and optimism to keep pushing through the pain and discouragement that comes with a life with chronic illness.  Searching for the larger, deeper meanings, a connection to humankind, the world, the divine, is an important part of the human experience.  There comes a time in our lives when most of us wonder what we are here for, what our mission is, what we are uniquely put on this earth to do.  Be it spiritual, altruistic, political, creative, there is something that sustains us, that pulls us forward.

It is easy to lose sight of this when we struggle with pain.  Ending the suffering becomes important enough that we can forget there is more to it.  I don’t believe there is anything inherently ennobling in pain.  “No pain no gain” is a bankrupt philosophy.  People can achieve great personal growth out of learning experiences based in pain.  They can also become embittered, limited and frightened by pain.  People can achieve great personal growth without great pain.  There are no guarantees, no formulas.  My experience is that when we are living inside a known, expressed purpose or goal, it gives a larger context to our experiences that makes it worth moving forward, worth seeking out the learning, worth looking beyond the pain.

As a coach, I help people determine their goals for their lives – what possibilities they will create for themselves and the world, what they value most that they want to promote.  Of course if we are ill we want to feel better, but feel better for what?  Feel better so I can be a person who can squeeze every moment of enjoyment out of life, and give it to everyone around me?  That’s worth feeling better for!  You get there at least in part, and as much as possible, by living that way today.  So we talked a few weeks ago in this blog about having fun, because your life is NOW, not someday when you’re all better.  If your goal is to have a family full of love, have it NOW, today.  If you want to be creative, be creative now.

My goal, in its most recent expression, is to build lives in balance – creating wellness, joy and
abundance.  That means for me, my family, my friends, my clients.  It means that’s how I approach my politics, my community, my world.  It means that’s how I make choices about my day.  When I spend the whole weekend with Migraines, as I did this weekend, I need to think about what a life in balance looks like in that context.  For me this time it looked like staying in bed when I felt like I should be up and helping, taking medication when I didn’t want to, accepting that two beautiful October days were going by with me inside, inviting my children and my husband to spend time with me in my bedroom, one by one, since I couldn’t deal with them in a noisy group in the noisy downstairs.  It meant putting off this writing and some other work until today.  I’m glad my pain is mostly gone today.  But even gladder that I can be more active in pursuing my goal today.

Think about what you’re here for.  Your unique contribution, your humor, your helpfulness, your intelligence, your skills, your drive, your compassion, your biscuits, your strength.  Take care of yourself, your nervous system, your body and soul, so the world can have that, the gift you are.  Do what it takes to be well inside of that.  Get better for that.

– Megan Oltman

Night sky courtesy of Adan Garcia; summer field courtesy of Zenera/Serena.

Tags: goal setting, living in the moment, Migraine pain, wellness
Posted in Managing, Musings | Comments (2)

Vote for Better Health

October 2nd, 2008

An election is upon us!  (Apologies to readers outside the U.S. but I know our national obsession is big news everywhere these days.) The purpose of this blog is not to take sides politically, so I won’t be pushing a platform. I do want to urge all U.S. citizens to get out and vote!

If you aren’t registered, the deadlines are coming up.  They vary state by state.  To get electoral information for your state, check out: Rock the Vote.  Rock the Vote even has voter registration forms you can download and mail in!  How cool is that?!  In Alaska you must be registered by this Sunday, October 5th.  Several states have deadlines this coming Monday, October 6th.  Most others have deadlines sometime between October 14th and 20th, although Idaho, Iowa, Maine, Minnesota, Montana, Wisconsin, and Wyoming permit registration at the polls on Election Day.  A big round of applause to those states for actually making it easier to exercise the franchise!  But please remember lines can be long on Election Day, and register ahead if you can.

If you are afraid you might not be able to make it out to the polls, get an absentee ballot.  Check with your
local Board of Elections, you usually have to request one a few weeks ahead, and in most places you can use it if necessary, or show up and vote if you’re able.  Some states have early voting, so you can vote while you feel well in case the migraine monster strikes on Election Day!  You have lots of options, so please exercise them, stand up and be counted!

What does this have to do with healthcare? Well, I know I’m not alone in thinking our healthcare system is seriously broken. How about you? Do you have health insurance? Even if you do – Are your premiums affordable? How is your coverage? How high are your deductibles? How good is the care available under your plan? How much are you paying for prescriptions? How much of your total income is going to healthcare each year? Personally, as a self-employed person, my healthcare costs (premiums, deductibles, and co-pays) are second only in my budget to housing costs, ahead of food and transportation costs! I believe we need a new President with a commitment to real change in our healthcare system, and a Congress to help pass the laws that will give us that change.

Please get informed. Don’t vote based on commercials or sound-bites or looks or popularity – look at the issues that matter to you. Do some reading, look below the surface. It doesn’t have to take long. If healthcare is important, as I’m sure it is to most of us, you can start by taking a look at this tool from Health Central: Healthcare ’08 PoliGraph.  You can use it to compare where you stand on various aspects of healthcare with where the presidential candidates stand. Get informed and then get out and vote. Thanks!

– Megan Oltman

Ballot box image courtesy of Just-us-3.

Tags: election, health insurance, healthcare, vote
Posted in Advocacy | Comments (0)

September Pain Blog Carnival – New Beginnings

October 1st, 2008

Greetings my friends – I know you haven’t heard a lot from me in the past week, and I’ll come tell you all about it soon.  In the meantime, I want to point you towards some good reading over at How to Cope with Pain, a site which is a great resource for many kinds of chronic pain, Migraine included.  The September Pain Blog Carnival is posted today on the theme of “New Beginnings” – in keeping with back to school and our general tendency to get back to work in the Fall.  Check it out at September Pain Blog Carnival.

Talk to you soon!

– Megan Oltman

Tags: chronic pain, migraine
Posted in Weblogs | Comments (1)

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)

Can You See my Pain? Can I See my Pain?

September 8th, 2008

It’s Invisible Illness Awareness Week, a worldwide effort to bring together people who live with invisible chronic illness and those who love them.

According to the Invisible Illness Blog, nearly 1 in 2 Americans have some kind of chronic illness.  From heart disease to mental illnesses, cancer, lupus, chronic fatigue, Migraine and headache disorders and many others, people are suffering all around.   While our illnesses may be invisible, giving no outward visual signs, why are they so unknown to those around us?

The statistics on Migraine disease are staggering.

• About 12% of the human population has Migraine disease (at any given time).  That’s about 1 out of every 8 people you know.
• About 20% of the human population will have Migraine disease at some time in their lifetime (since it may develop in childhood, adolescence or adulthood, and since it sometimes fades or disappears with age).  That’s about 1 out of every 5 people you know!
• About 47% of Migraineurs have 3 or more Migraine attacks per month.  That’s about 1 out of every 17 people you know!

Given those numbers, why is this disease so misunderstood, un-researched, underfunded, and the treatment options so undeveloped?  Why do so many people, even doctors, think it’s “just a headache”? There’s enough for several more posts in answer to that question, but I think invisibility is one of the major reasons.

Think about the invisibility of head pain.  Unless someone is highly attuned to changes in our eyes and expressions, or the cue of hand to forehead, they will not know when we have a Migraine attack.  It’s not like they can see the hammer knocking us on the head!  Even more significantly, perhaps, it’s hard for others to understand how we might feel fine today, but be unable to get out of bed tomorrow.  It’s hard to understand the long term consequences of frequent or chronic pain.  Migraine can increase stroke risk, and Migraine disease can cause brain damage over time: this is recent knowledge.

There is much we can do to educate others, to explain to those around us, to rally for more research, to insist on accommodations at work and adequate treatment from doctors, emergency rooms, and insurance companies.  But I think one foundation of the problem lies in how invisible this illness even to ourselves.

Last week I practiced saying “I am chronically ill.”  I said it to a number of different people, and told it to myself in the mirror.   Big deal?  It is a big deal.  It is the reality of my life for most of the last 13 years, yet I have a very hard time accepting it.  I am a meticulous record keeper.  I keep a very detailed Migraine and Wellness diary where I track not only Migraines but my sinus infections, my fatigue, and my dizziness, among other things.  I can tell you that over the past 4 years, I have been sick, with my ability to function significantly reduced, 25% of the time.  It’s probably higher than that, because I have a lot of Migraines in the evening, but if I have worked and functioned most of the day, I have counted that as a well day.

I am one of the lucky ones.  Many chronically ill people are sick more than half the time.  Since I am in business for myself, I can set my work up to be flexible and take the time I need for myself.  My ability to meet deadlines and my income do suffer.  Imagine having a job, and needing to take 6 sick days per month.  That’s what my numbers translate to.

Those are the facts, and yet it is very hard to accept that I am chronically ill.  If you’re not sick every day, it’s easy to fall into denial again.  To forget that there are limitations to what I can do.  That even when I feel great I need to be very cautious and marshal my energy.   That things I used to do are not
available to me any more.  That I need to adjust the standards I have measured myself by.

I need to be as kind, forbearing, patient, understanding and loving towards myself as I would be to a friend who was chronically ill.  Why is that so hard?  I need to accept where I am without giving up hope, and while still striving to take better care of myself, get better treatment, do everything I can to be as well as I can be.

When I am caring for myself in this way (and I do manage it at times), it is easier for me to be real with the people around me.  To explain my illness, to help them understand.  I need to have my illness visible to me; then I can help make it visible to others.

– Megan Oltman

Tags: chronic illness, invisible illness, migraine
Posted in Advocacy, Communicating, Managing | Comments (2)