Saturday, July 19, 2014

I am not grateful

It's strangely common to hear statements of gratefulness from people who are gravely ill.  Grateful not in spite of their disease, but because of it.  The concept of disease as gift escapes me.  I don't get it.  It may be heresy, but I am not a member of the disease gratitude club.

Aura 1
I have had chronic migraine disease for 30 plus years.  I have had migraines since childhood.  That's a long time.  While I do have many people and times in life I'm grateful for, I am not grateful for the daily pain in my head.  Not only do I have headaches nearly all the time, I have prodromes that include extreme fatigue, difficulty word finding, letter reversals when I'm writing, poor concentration, central nervous system irritability, and increasing numbers of classic visual auras complete with scintillating lights and holes in my visual field.  Postdromes include (but are not limited to) fatigue, depression, difficulty concentrating.  They leave me feeling fragmented - distracted, disparate and disturbed  There's more, but that will do.  Y'all who have migraines know all about this, but lots of people I'm around don't truly realize the extent of symptoms and the disruption headaches cause before and after the head pain phase.

Headaches have robbed me of days, weeks, months, years of life while I have languished in pain on the couch, in bed, in the bathroom vomiting into the toilet or in the doctor's office.  Chronic daily headache does not (usually) kill you.  It just makes you sick and miserable a lot of the time.  In my case - and that of many others - there seems to be no cure nor even any remission.

Aura 2
I have 2 friends who are gravely ill with cancer.  While I haven't been close to these women over the years, we definitely share a history.  Our kids were kids together, and we're members of a larger shared community in a small town.  I don't know how they feel about themselves, their lives and their disease right now, but I do know that there has been an upwelling of family and community support for them in their struggle.  I'm glad that this is so.  They need it and deserve it.  We all do during critical, difficult times of our lives.  And don't get me wrong, given the choice, I wouldn't trade maladies with them.

But people who suffer from migraine don't get much community support.  Severe headache disease is insidious.  It is treacherous.  While robbing you, the sufferer, of life, liberty and pursuit of happiness, it leaves you looking more or less normal.  It is a silent killer of peace of mind and joie de vivre.  Since it is "just a headache," there is an expectation that you should just pop a pill and soldier on - show up to the party or the job or whatever that entails in the larger sense. We all try to rise to expectations, myself included.  When I (frequently) can't, it leaves me feeling guilty and alone, embarrassed that I have failed yet again to hold up my end.   I know better, but these feelings are a hard habit to break.  And since it is just another headache, and the whole thing goes on forever, there is not much understanding out there.  No one offers to clean my house, buy my groceries or cook dinner.  I kind of understand.  People are busy, and this particular disease just drags on endlessly.  There is no end point.
In the beginning....... and 20' later

Migraine has taken the following toll in my life:
  • Loss of huge blocks of time with my family and friends
  • Inability to attend significant personal, family, work and community events
  • Loss of friends and misunderstandings 
  • Loss of work days and several leaves of absence from three different jobs over the years
  • Ultimately - forced early retirement from a profession I loved
  • Loss of ability to do the things I love to do: travel, write, weave, walk, swim, hang out w/ people
  • Inability to maintain my house, my garden, and provide for and participate with my family
  • Significant loss of income
  • Treatments, medications and hospitalizations that have cost me tens of thousands of dollars
  • Persistant feelings of isolation and loneliness
  • Other losses so significant and personal that I'm not even willing to discuss them publicly.

The above list is not just mine.  It is common among people who suffer from chronic headache.  
Here are some statistics:

About 40 million Americans suffer from migraine, some 14 percent of the U.S. population.  75% are women. 
Between 2 and 5% of the population, world-wide, suffers from chronic migraine
 (15 or more headache days per month).
According to the World Health Organization, migraines are a top leading cause of disability worldwide.
According the the WHO, severe migraine attacks are among the most disabling illnesses comparable to dementia, quadriplegia and active psychosis. 
Twenty to 30 percent of U.S. soldiers returning from combat develop migraine disease.
Migraine is the least publicly funded of all neurological disease relative to its huge economic impact on peoples lives. 

When I read what I've written, I feel like I'm whining, and that's kind of the trouble.  I'm not.  It's just my truth, and it resembles that of many others similarly afflicted.  I'm in a continual process of puzzling out what it means to keep living with such a difficult malady and doing the best I can.  There are essentially no guidelines and no support groups for people like me, so we all have to create our own ways of communicating and sorting things out.

Thursday, April 24, 2014

Dark days and Dog Beach


I now have chronic daily migraines.  Actually I have had for some time, but now- no time off.  I'm up against it big time, and I'm barely treading water.  I've tried all the usual preventative medications and then some.  A few worked for a time and then I developed a tolerance with decreasing effectiveness - and ultimately a switch to yet another potent drug.  My body is changing with age.  Especially in the last couple of years, I have become increasingly intolerant of these medications.  The side effects are no longer just a nuisance.  They are scary, painful, and basically counterproductive.  These drugs are dragging me down.

What now?

What's next, very soon, is an appointment at Mayo Clinic in Scottsdale, Arizona.  While I'm trying to let go of any expectations, my purpose is to determine if I'm a candidate for an occipital nerve stimulator.  Once I made the decision to pursue this avenue via Mayo, things lightened up a little for me.

Dog Beach

Life went on and a few things happened.  My sister came to town, and we began to communicate a little.  I found a massage therapist who is a "healer" in addition to her other skills.  

We went to Santa Cruz to visit my son. I put in daily beach time, and I felt better for it. Santa Cruz is eminently bike-able, so I rode my bike a short way to the beach. Lying on the sand in the sun, listening to the sounds of surf, kids, families, dogs playing on this off-leash beach was pure bliss.

Once back home, the weather began to warm up and dry out a little.  I got out more including frequent jaunts down to the water.  I eased back on the medication that was giving me fits in terms of the worst side effects.  I amped up my yoga practice.  I began to feel my body respond during or after each of these ministrations.  It's as if I have just a little more breathing room than I did before, short-term periods of relief and true relaxation, a few more hours here and there between headaches. 

My plans to go to Mayo Clinic fell into place more easily than I expected.  The appointment date wasn't that far in the future.  A credit with Alaska Airlines covered both my husband's and my airfare.  An old friend offered us his time share condo in Phoenix.

I am trying to trust that, whatever happens, these are good omens that I will be taken of in a larger sense.  It's hard for me to let go like this, but it also feels right and perhaps true.


In my last post I mentioned going to the Washington Center for Pain Management for the occipital nerve stimulator.  This turned out to be a difficult experience, and I would not recommend this center.  If you would like more information, reply to this post.

Thursday, March 6, 2014

Staying Afloat

When times get really rough

November, December and January were very hard for me.  I had kind of a failed trip to Mexico where I usually float high on the warm waters of the Pacific.  But I couldn't hack the heat, my headaches got worse, the hotel messed up my reservation and kept moving me around from room to room.  There were a lot of noisy parties during a usually quiet time of year.  I finally gave up and came home early.

My headache doc is a prince of a guy, but he inadvertently gave me the message that there wasn't anything more he could do for me.  He also suggested it might not be helpful to go back to Michigan again, (the Michigan Head Pain and Neurological Institute).  I was working with an anesthesiologist, who had no more tricks in his bag.  He also gave me to understand that since the occipital nerve injections hadn't helped, I was not a candidate for an occipital nerve stimulator.

In short, I felt like I had been written off.  I was sinking.  My concentration was shot.  I couldn't really think straight.  I had no plan for what to do next and no energy to figure it out.  I knew I was on the edge of depression.  I was at a low ebb, living from pill to pill, injection to injection with headaches in between.


In January, at a follow-up visit to Pacific Rim Headache Center, my doc suggested it was time to take a serious look at an occipital nerve stimulator, disabusing me of the notion that I wasn't a candidate.  Failure to benefit from occipital nerve injections do not rule out an occipital nerve stimulator.  He gave me contact info. on a couple of respected centers that were doing the procedure, the Migraine Treatment Centers of America and the Washington Center for Pain Management.  I went home and went to work. 

My first attempt to get the ball rolling was disheartening.  Online, I sent for a packet of information on the Omega Procedure from the Migraine Treatment Centers of America.  I got a cheery phone call offering all kinds of information, then a packet of glossy brochures in the mail, then another phone call.  Everyone was very eager to help.  Finally, I called to make an appointment.  Upon learning I have Medicare (plus a secondary), the Migraine Treatment Center(s) of American was immediately uninterested in my business.  Secondary insurance or no, they serve no one on Medicare - period.  They also told me Medicare considers occipital nerve stimulators - for headache - an "investigative" procedure, not covered.  I was angry and frustrated and felt like I'd been gut punched again.


Sea Change

With little optimism, I called the Washington Center for Pain Management, which does the Reed Procedure.  (The Omega Procedure and the Reed Procedure are different names for essentially the same procedure.)  They were encouraging.  In February, I made an appointment.  My husband and I went to see Dr. M in Everett, which is pretty close to home.  We both liked him.  He answered all my questions and outlined the series of steps I would need to go through as well as addressing the issue of insurance coverage and cost, which most doctors, hospitals and clinics are reluctant to discuss in any detail.

After leaving, on the drive home, I realized I felt better than I had in months.  I became more buoyant. My mood lifted.  My sort of mental vision snapped back into place.  I was thinking with a sense of clarity that had been missing for weeks.

Who knows where this will all lead me, whether the occipital nerve stimulator with work for me.  But the point is that I now see possibilities when none seemed to exist for me previously.

Hope renewed

In the water, I am naturally buoyant; yet I had been sinking.  Staying afloat requires hope.  
Now, I hope the new procedure works.  
I hope for lots of swimming come spring and summer. 
I hope for a fall trip to somewhere warm with a great swimming hole.
Any ideas?

Thursday, February 6, 2014

Loving myself……...

the Most difficult kind of love

The hardest love to give - and receive is self love.  In spite of my best intentions, I am always looking for something I have done to aggravate or cause my own pain.  It is the ultimate trap to suppose the fault for chronic migraine lies within me.  I know this.  Yet, especially when I have had a hard week, month, year, I look for ways I have inflicted this misery upon myself.

New years resolution

This year my list of new year's resolutions is short:
1.  Be kinder to myself
That's it.
Somehow, these annual, seasonal do-good or do-better intentions tend to become the critical monkey on our backs that is always telling us we haven't quite measured up.  Thus, I'm attempting to turn that around.  I'm doing great considering the hand I've been dealt.  My job is to keep reminding myself of that fact and love myself "as is."  I come with flaws as do we all.  But sometimes "as is" means it's the best deal going, something that is essentially intact and lovable with some little unimportant imperfection.

Things I try to remember

1.  This is not your fault (just like it is not your granny's fault or your son's fault).
2.  You are actually a very strong person.
3.  Vulnerability is not weakness.
4.  You are lovable.
5.  Many people love you.
6.  Your friends and family understand more than you realize.
7.  You deserve to get better.
8.  You are not alone.

Valentines Day earrings from my husband

Free association on  LOVE

Love makes the world go round
Heart = love
Heart first
Heart of my hearts
Healing heart
Mi corazón
Mi amor
Love heals
My heart
Dear heart
Heart and soul
I have always loved the heart image 
I used to have a cake pan in the shape of a heart.  I made the kids' birthday cakes shaped like hearts
Love comes from the heart
Love lorn
Heart sore
What does love have to do with healing my head?
What does love have to do with hope?
If I am in danger of losing hope, does that mean I need to love myself more?
Is hope a function of love?

Friday, November 29, 2013

Parted out

Unholy or unwhole?

Have you ever felt like you're not all of a piece?  Like there is too much going on in your body?  Sometimes I can't seem to keep track of it all and, certainly no one else is helping me do it

Different Symptoms - different doctors

  • Headaches:  headache specialist, anesthesiologist, masseuse
  • "Routine care" (whatever that is):  primary care doc
  • Nutrition, diet and alternative treatment:  including prescription for medical cannabis - Naturopath, acupuncturist
  • Gut problems (mostly caused by medication prescribed by headache specialist):  naturopath, yoga teacher, primary care doc
  • Achilles tendonitis:  PT, osteopath, acupuncturist
  • Emotional status:  mental health care provider.
  • Coordination of recommendations of all the above:  You're on your own.  No one gets paid for this.

Reluctantly becoming your own care coordinator

Under the circumstances, I'm fortunate that I have primary and secondary insurance coverage for most of the above and that I have providers that I mostly like and respect.  However, it's a time consuming, exhausting, nitpicky battle to stay on top of extracting payment for services that are supposedly covered, to stay on top of multiple prescription medications, track your symptoms and possible drug reactions, all while trying to maintain some kind of a balanced life.  Just yesterday I found myself on the phone, alternately calling one infusion service, then the other.  I was essentially playing them off against each other to see which offered the best deal (coverage) in combination with the services I wanted.   

Conflicting recommendations from different providers require a high level of attentiveness and decision making that is basically a seat-of-the-pants proposition.  The only way to avoid this would be to get all providers together in a care conference, and what are the chances of that?


Of course one way to avoid a lot of the confusion is to accept the current level of pain as a permanent proposition and just quit trying to get better.  Not an option I choose.

Sometimes I do call a halt to a new approach, a recommendation or an idea - even my own.  I can only handle so much at any one time.  Anything else will have to wait or, even better, won't be necessary because everything I'm doing now will ultimately turn it around.  I will feel better, and I can let the rest go.

Generally, what I strive to do in my journey is just to stay open when problems arise and allow for the possibilities they may present.  In the meantime……..  I "Don't let yesterday use up too much of today."  Will Rogers.

Wednesday, September 25, 2013

Who Am I Now?

Change comes with episodic, then chronic migraine

I have had migraines for as long as I can remember, and that's a long time.  They began in childhood and continued off and on into adulthood.  They were pretty infrequent in the beginning, not requiring any real conscious adaptation except going to bed when they occurred.  Then, as I grew up and had a family, they began to have a real impact, especially with my second pregnancy.  I started taking both over-the-counter and prescription pain meds and ergot-based abortives.  They began to interfere with my kids and my work in my 30's and 40's as I developed headaches toward the end of a work day.  I took my first (of eventually several) leave of absence in about 1993.


At first, the changes in my life developed around strategies to cope with the headaches and then just keep going.  As my migraines increased in frequency and severity, I began to realize that I had some triggers, like florescent lights and cigarette smoke, so I avoided them as best I could - and kept going.  

My kids were young; I had a profession, actually 2, and then a third profession; I had family and in-laws near and far; I had a home and responsibilities and things I wanted and needed to do, which all came first.  I was an occupational therapist, and for 30 years I evaluated, treated, cared for children with disabilities.  I was and am a weaver and fiber artist, and I worked hard at both occupations.  At age 55, knowing it was time for a change, I went back to school and got a certification to teach English as a second language.  I went to work teaching at a local community college, loving my new profession.

The older I got, the more frequent the headaches became, and the harder I struggled to keep me and my life on an even keel.  Twenty years ago, I went to my first of many neurologists in an attempt to get better control.  In 1998 I took 3 months off and went to La Paz, Mexico to see if a change in climate might effect my migraines.  It was a great experience, but it didn't do anything to alleviate my headaches.  By this time, they were chronic, daily headaches.  I have had many ups and downs in terms of episodes when my headaches were under better control and then once again under poor control.  They history of all my attempts to bludgeon my headaches into line and to beat back the pain is long and complicated and continues to this day.  It includes a long, long list of preventative meds, abortive drugs and rescue pain killers as well as a long-term yoga practice and many other alternative treatments.  But there are other more internal changes that have taken place.

What?  Me change?


Today has been a good day, and it still is.  For that I'm thankful.  It's not that I wasn't grateful in the past for the good things and times in life, but now I'm much more aware of each one when it happens or occurs to me.  I'm still afraid sometimes and pissed off, sad and anxious, but like Scarlet O'Hara, I somehow believe, "tomorrow is another day."

Grace and hope

I'm not really a practicing Christian, but I believe in grace.  I believe in the gift of a good day or even a good hour.

And I believe in hope.  I always have.  I was reminded of those two important words recently by a close friend.  I hang on to them, and I try to remember them.

Staying tuned in

I pay more attention to how I'm feeling right now and try to honor those feelings and do what I need to do to support myself.  I don't always succeed.

Yesterday, Saturday, I left the house at 9:30 am to meet and share with a group of artist friends.  I was feeling so so, a little headachy and nauseated, but I wanted to go.  After I got home at 2:30, I really wanted to go prowl my local beach for beach glass and sniff the salt water, so I went for a walk.  After I got home, I just had to see what I could make with my collection of found objects, so I played around intently for an hour or more.  When I finally came up for air, I realized I was about done for, with headache and fatigue building.  I needed to eat NOW.  So I threw some dinner together and ate.  This was all good stuff, but it was just too much on a day (like all days) when I needed to pay close attention.

This is, still, a tough one.  Because when I'm in the timeless flow of working on a project, it's a fine thing.  The work takes the upper hand and I'm enveloped in the process without any sense of beginning or end.  This is important moment to moment, and to interfere or step back means you lose a creative opportunity.

Leaving blame behind

When I mess up like this, I don't blame myself although I used to.  Overall my inclination is to forget myself, so to speak.  I am learning, ever so slowly, to remember myself moment to moment.

Honesty and openness:  baring my chest

I'm more open now about how I'm really feeling.  When people ask, I usually tell them, the short form.  Most people don't want more.  Writing this blog has become a way for me to tell the world who and how I am.  The good, the bad and the ugly.  While there's much about my life I leave out, my family for instance, the migraine part sees the light of day now.  I'm not hiding it or behind it.


Sunday, September 8, 2013

Something we never talk about

Abuse linked to migraine

It's out there in the literature.  There are plenty of references to it, the relationship between childhood emotional, physical, sexual abuse and/ or neglect to migraine and other pain disorders.  This article:
Abuse, Post-Traumatic Stress Disorder and Migraine by Gretchen E. Tietjen, MD and Dawn C. Buse, PhD, is a good summary of the issue.

Abuse is common and occurs worldwide.  It can be physical, emotional, or sexual, and it also includes neglect.  There is a strong association between between abuse and trauma on the one hand and migraine and other chronic pain and emotional disorders on the other hand.  Psychological therapies, including cognitive behavioral therapy (CBT) and EMDR or eye movement desensitization and resensitization are among the approaches that produce some success in defusing traumatic experiences.

It is documented and accepted within the community of headache sufferers and specialists that migraine runs in the family.  There is a strong genetic association.  In addition there is now a theory out there that migraine may be epigenetic.  This means that environmental factors such as early stress and abuse may alter your DNA, and that the resulting effects are hereditary.    
Presumably, if you have a genetic history of migraine in your family as well as possible epigenetic factors in your own background, you are doubly threatened, but the research on how all these issues fit together is in its infancy.

While there are researchers like Dr. Gretchen Tietjen, documenting the relationship between migraine and abuse <>, I have found little research-based information on the efficacy of different treatment approaches, whether medication-based or psychological.

We tend not to deal with this issue in migraine blogs, and we don't discuss it much on other migraine-related social media sites. Your physician, even if he or she is a headache specialist, will probably not bring it up.  In my opinion, this is a big hole in our collective view.

Strangely, this is the only pic I can find
of all of us together.

Me and my family

So in an attempt to get the conversation going, I'll share a little of my own story.

I come from a nuclear family of four, mother, father and older sister.  There was no history of alcoholism, sexual or physical abuse nor of physical neglect.  On the other hand, there was a great deal of anger, certainly on my mother's part and eventually from my sister.  There was serious stress, related in part to my father's diagnosis of multiple sclerosis.  He was diagnosed the year I was born.  While there are a lot of holes in my memory, I remember that my parents fought or argued incessantly.  My father was in and out of the hospital throughout my childhood even though he continued to work as a civil engineer in the oil fields of California.

To make a very long story short, my relationship with my mother was difficult forever.  She was controlling and critical and angry.  I think that may have become worse over the years as my father's disease progressed, but I don't really trust my memory to sort all this out.  I was afraid of her.

As my sister grew into adolescence, she began to express her anger verbally and with lots of door slamming.  As she grew older, she was charming and extroverted.  As I begin to grow up, I became more introverted and careful to avoid doing or saying anything that might upset the family apple cart.
You would not believe how many of our family pictures feature fish!

At some point, my sister's anger and passion began to turn toward me, and I began to be afraid of her.  I still am.

I have no idea whether or how much all this has contributed to my headaches.  I have a mental health specialist I see regularly, and I continue to explore all avenues that may, one day, help reduce or ameliorate my headaches.