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?

Solutions?

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.
  

Coping

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?

Gratitude

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.








   






Friday, August 30, 2013

Accomplishment in spite of the pain: give yourself credit

An opportunity to participate

This last winter, sometime after the first of the year, the Whatcom Museum sent out a call to regional artists to participate in an open hanging.  The title of the exhibit currently on display is:  Nature in the Balance:  Artists Interpreting Climate Change.  
      What is happening to the earth? Why is it happening? 
      What are your visions of the future? How can people make a difference?  
These were the questions that the artist's submission was to address.  With at least 3 or 4 months to produce a piece, I decided to try to respond to the invitation.

Revisiting an important experience
Baker Lake

In 1993, I traveled to the Canadian Arctic and spent 3 weeks living with a native Inuit family.  The community is called Baker Lake.  It is in the Canadian territory of Nunuvut at the northwestern end of Hudson Bay.  The purpose of my visit was to study Inuit clothing patterns and techniques and appliquéd wallhangings.  It was an incredible experience and formative in terms of my fiber art from that time forward.  I returned with a hazy plan to weave and sew a coat which would draw inspiration from the amautik or mother's parka.  Many pieces of my subsequent art work grew out of that experience, but although I started work on the parka piece, I never completed it. 
 

The big push
My unfinished coat languished for years in my project stack for want of the final inspiration.  Then came the call to artists from the Museum, and I immediately seized on the idea of finally bringing it to completion.  

Many places in the world have already felt the harsh and frightening effects of climate change, but nowhere greater than the Arctic.  The people who live there depend on the ice for they are still actively fishing and hunting to sustain themselves.  And the ice, which supports the fish and animals in complex ways, is fast disappearing.

Coat in process with cut-out paper images

The Coat

Exhibited in museum
The shaping of the coat and the hood are derivations of the mothers' parka, but adapted for practical wear in this part of the country.  The border design on the bottom attempts to portray the loss of traditional ways of life the Inuit are experiencing, in part because of climate change. As you move around the coat from right front to back to left side and front, the colors and vividness of the traditional images fade.


Give yourself credit

I worked on this project, as I am able now, a day here and a day there until the very day I was required to turn the piece in to the museum.  Then I heaved a big sigh of relief - and sort of forgot to pat myself on the back for making a major effort and getting important work done.  So now I'm doing it by writing this post with all the photos.

It doesn't have to be a work of art.
I rise to the occasion almost weekly of taking care of my
two year old grandson for a day or part of a day, which
is really important for me and for him.    

A trap, all too easy to fall into, is perpetual disappointment about what you can't or didn't do because of a headache - or lots of headaches.  So don't forget to give yourself credit for those things that you actually pull off against all odds.


  

Friday, August 9, 2013

Suicide is a scary thought

Hanging on by my fingernails            

Hanging on - just barely

This is a hard topic for me right now because it cuts a little too close to the bone.  I've been having a really hard time lately.  The headaches have been relentless AND accompanied by mood crashes that last at least a couple of days.  It all leaves me feeling worthless as a human being.  Worth less than other people around me who walk the planet and go about their daily lives getting things done, having a good time, etc.  Sometimes all you can do is just hang on.

"I just can't do this anymore."

That's the recurrent thought I have when things get really bad and I don't have any substantive breaks between headache episodes.  It doesn't go much beyond this thought for me, but at this hanging on stage, I'm scared and anxious. I feel like I'm on a precipice.

Suicide is a bad idea

of course.  It destroys everyone around you and eliminates the possibility that you might, in fact, get better.  And guess what,  after 3 or 4 really bad weeks, I seem to be climbing out of the abyss. A change in medication, talking to others (my husband, my mental health counselor), and - hanging on.  Also, I keep trying new ideas and recycling some old ones.  I keep in mind some outside options like a return to the inpatient program that helped me before, procedures I haven't tried, etc.  

The good memories

I try hard to hold on to the vision, the feelings, the touch and sound of good times, what my therapist calls resourcing.  Our recent trip to California, in spite of my "difficulties," included some great times, the ones to hold onto.

Floating in the Eel River in northern Cal

Swimming has become one of my favorite activities lately.  I'm a really good floater and I feel weightless and cool, including my head, which all too often, feels too hot and heavy for my body.  The Eel River in the redwoods of northern California has some fantastic swimming holes.  This was a short hike below our campground.





A good dinner with my family, swimming in Bellingham Bay, 5 min. from our house, taking care of my grandson:  these are all worth hanging onto when the going gets tough.

Liam

Friday, July 26, 2013

Migraine roller coaster on the roll


Santa Cruz boardwalk


Rolling South


Last week we packed up the van and headed south on our annual road trip from northwest Washington to Santa Cruz, Calif.  This seasonal Washington to California migration has been a part of my entire adult life.  I left my native California to move to Oregon and later Washington at age 24.  One or two times a year I would return to visit my parents.  Eventually, my husband, then my children became part of these journeys.  My father and then my mother died, and for a couple of years, I had seemingly left my home state behind for good.  Then my youngest son settled into Santa Cruz with a job and a girlfriend, and I found myself, like a seasonal laborer, once again committed to heading south on a regular basis.  This feels right that I get to come 'home' again once or twice a year.  

MBARI open house

Herky jerky pain


But year by year my trips have been punctuated by worsening pain.  The trajectory is scary, and when we hit the freeway to head south this year, I was filled with trepidation.  In spite of a recent cervical radio frequency ablation, my headaches continue to be daily or every other day.  I awake with a migraine, which responds (thankfully) to DHE injections, and the pain slowly subsides over the course of hours.  For the remainder of my day, I am limp, exhausted physically and mentally.  The following day I awake more or less ok and slowly surface to a day without major pain, but I'm often batting zero in the energy league.  Sometimes I do okay and have a day or two of relative normality before I am jerked back to survival mode by the pain.  The feelings of illness, pain, and icky recovery are relentless.  Right now it's hard to believe this is anything but a slippery slope.  Camping and being on the road have been hard, hard, hard this year.

Santa Cruz beach fires

Emotional roller coaster


There are days, weeks, months when I tolerate all this fairly well, but right now I have just had it.  I am done in, out of patience, angry and depressed.  All this while attempting to travel.  As always, I have resources and an idea or even several ideas about what I must do when I get home in a couple of days.  But this time around, this trip - I feel beaten up by the angel of migraine.  


Dinner at Vasilis

High points in spite of it all


Yup, even though I am currently in shitty shape, there have been good days and sterling moments.  And this is what I'll try to remember:  getting a disc golf lesson from my hysterically funny son, going to the annual open house at MBARI or the Monterey Bay Aquarium Research Institute where he works, going out to dinner at Vasilis Greek Restaurant in Santa Cruz with my family, camping in the redwoods, swimming in the Merced River in Yosemite National Park, swimming in the ocean in Santa Cruz, photographing the Santa Cruz boardwalk and amusement park at sunset with my husband and son, and just being together one more time.




  

Friday, July 5, 2013

Tips for Trips

Traveling with migraine or chronic daily headache

I love to travel, be off, off, off and away.  But with migraines, there's a catch, isn't there.  Basically traveling is often stressful, and stress and migraines are just not a good mix.  On the other hand, it is so worth it to me to work around my pain issues and find a way to take off on my next adventure.  I always have an idea or plan brewing about where and when to go.

Belief:  plans and fantasies are important

This summer my husband and I are taking off in our van and driving from northwest Washington State to Santa Cruz, Calif. to see my son - and maybe beyond.  This has become an annual trip for us with many pleasurable memories.  Each year, we take a detour here or there, a little different route, revisit some old haunts, since I'm originally from California, or seek out some new spots.  This year my plan is to swim my way south, making our first overnight stop at Sol Duc Hot Springs.  Least you think we're talking luxury travel here, let me point out we'll be in the campground, not the lodge.

Shasta Calif.

In September, my friend Janet and I are taking a short trip, a long weekend really, to Vancouver, BC for a two and a half day workshop, lecture in fiber arts at the annual Maiwa symposium.
http://www.maiwa.com/index.html

Following that, I'm hoping to head south to Mexico again, on my own, in October or early November, seek out very economical lodgings, and pitch my tent, so to speak, for a couple of months.  I would like to tutor English while I'm there.  This one could change, but still - it's out there, something between a fantasy and a plan.

Or..... if that doesn't pan out, my friend Meredith and I are talking about a road trip to the Southwest, the South and then Florida.  I have no idea how I would do, on the road, for the time it takes to get that far, but I could always bail and head for home at the nearest airport.


Tips

So how do I do this, and how could you?
  1. Plan ahead.  Sadly, spur of the moment traveling is just too fraught with possible disaster for me and probably for you.
  2. Go where you want to go.  Pick a destination that will be pleasurable to you within your budget. This should include a place that, when you arrive, will allow you to do things you are able to do and enjoy doing.  
  3. Choose a place where you have a good chance of being comfortable at least part of the time.  You just have to be a little careful.  I have always wanted to go to Machu Picchu, Peru, and a few years ago, I was heavily into the planning stage with a friend.  As the year wore on and the time to actually make some travel decisions closed in, I began to get cold feet.  It was a really ambitious trip to a harsh climate, high altitude, and it was going to involve some hard travelin'.  In the end, I decided there was just too great a risk that I would spend all the money and effort to get there, and end up in pain, unable to actually be present in a fantastic place.  I cancelled out.  In the end I was disappointed but relieved.  I knew I had made the right decision for me.
  4. Give yourself some space.  I have to have some alone time and space to let my body rest and rejuvenate.  Sometimes this means I don't go on an excursion or walk with whoever.  I might take a nap or read for a few hours while just taking in the air, the sounds and sights immediately around me.
  5. Go with someone you trust to support you or travel alone, which for me, amounts to the same thing.  You need to feel sure that your traveling companion understands your limits and needs;  not that they must carry you, but that they must allow you, with grace, to take care of yourself.   
  6. Make it as easy on yourself as you can.  For example, when I go to Mexico, I usually add one night on the way down and/or on the way back to break up the loooong day.  That way I have a better chance of arriving in decent shape going and coming home.  If we take a camping trip, we leave open the option of getting a motel if things get rough.  Always leave yourself an out.  If any particular day's activity becomes too taxing, make sure you are in the position to cut it short if you need to.  Don't push too hard.  
    Monterey Bay Aquarium - fantastic, but I had to cut it a
    little short because the lighting plus long day triggered
    headache.  I'd go back, and I recommend it to anyone.
  7. Get all your scripts in order, and take extra medication - just in case.  Never check baggage w/ your meds in it.  Keep them close at hand.
  8. Carry all prescription medication in the container it came in with label from the doc, pharmacy, etc. with your name on it.
  9. Carry pain, sleeping and or anxiety medication, and use it when you need it.  Obviously this takes care and good judgment as well as the cooperation with your doctor.  Sometimes I get cranked up before a flight to Mexico, even though I've been many times.  I often take (judiciously) an extra half of a klonazepam tablet, which is one of my regular preventative drugs.  It calms me down and helps me arrive in better shape.  It also reduces the possibility that my gut will get upset.
  10. Take whatever gear keeps you more comfortable.  Here's my list:  neck pillow, ear plugs, iPod w/ noise blocking ear buds, eye mask, sun glasses and hat, my own pillow if traveling by car, travel yoga mat.
  11. Drink and eat frequently.  I carry an emergency stash of food so I won't get stuck over a long period with nothing I can eat.  If you're flying, once you've cleared security, fill your water bottle up in the restroom.
  12. Travel as light as you can.  Leave the extra stuff at home.  Go with a minimal wardrobe.  The more stuff you take, the more you have to take care of, carry, etc.
  13. Take luggage you can handle.  I fly with a smallish roller bag and a big fanny pack for most plane trips.  I used to carry a back pack, but my neck/ head issues just don't allow me to do that any more.
  14. Finally, take it easy.  Go slow.  If you're on a road trip, keep track of how you're feeling and stop when you need to.  If you're flying, once you arrive, give yourself and your body time to catch up.  Don't schedule some big event or excursion the day after you get there.  A final note:  I've personally found I can't travel by train, Amtrak that is.  I think it's the air circulation system that makes me sick.

Time travel

Sometimes, on any given day, I feel like I want to be anywhere but where I am, at home in Migralandia.  When that happens, I can time travel, transporting myself through time and space to memories and feelings of my last trip, or I can dream about my next one.



Thursday, June 27, 2013

Defying the gravity of migraine

I have a Bowling Ball inside my head


Heavy Duty

Having migraines is heavy.  It makes me feel bound down, full of pressure, and often brings me to me knees with the weight of it all.  I have my own personal image that has represented my headaches for years, not one I actively conjured up, but a nasty fantasy that popped into my head all on it's own, years ago and still returns from time to time.  I have a bowling ball inside my skull.  There is just a little space in there between the surface, the circumference of the ball, and that of my head.  With each movement of my head, it thunks against the inside of my skull.  It is a heavy burden, and as I move my head, its weight causes more anguish.

Floating

I have recently begun to develop a fantasy as well as an actual practice that provides me not only with relief but pure pleasure.  I am floating in the swimming pool at Bungalows la Madera in Zihuatanejo, Mexico.  I am on my back, at perfect ease, suspended, with my head cooled by the water, my hair streaming out on the surface and my head and body supported by elemental liquid.  

I am, in fact, very buoyant, and I love to swim, more and more, lately.  I go to Mexico a couple of times a year, and swimming is a huge draw for me.  This last trip I was on my own, with plenty of uninterrupted time.  It was May, off season, and there was hardly anyone else staying at my little hotel.  Alternating between swimming in the ocean and the pool, I began to play around with just floating, and it was lovely.  The pool water felt tepid on my body, warmed by the sun, but once I rolled over onto my back face tilted up, suspended with head and hair in the water, coolness permeated my scalp, and a wonderful feeling of relief took over.

 the Pool

Suspended Animation

Swimming is another piece of my fantasy supported by real-world experiences, as many as I can make happen.  For me, there is nothing like swimming in the ocean beyond the break line on a calm day, cruising along at a leisurely pace, buoyed up by salt water as it slides under and past my body.  Rivers with slow moving pools are good too and the lake in the summer.  I'm even beginning to appreciate the local city plunge or the YMCA pool.  After all, I live in the Pacific Northwest, and you can only swim outside for 2 or 3 months of the year.

In the lake

River swimming

Swimming is a trip

We are soon to take off on our annual road trip south to Santa Cruz, Calif. to see the sights and hang out with our son for a few days.  We have a van, and we camp or stay in a motel depending on the day, the place and how we're both feeling.  This year I'm plotting our course to take advantage of hot springs, swimming holes and beaches from the Canadian border to southern Calif., if we get that far.  Have fantasy, will travel.  I'll let you know how all that works out.


Thursday, June 20, 2013

No Baseline --- Am I sick? Is this normal? or Do I have lyme disease???

Another bleary-eyed day

Lately I've been feeling unfocused, fatigued, sleepy, and in some degree of head/ neck pain every day. Now if there's a good side to this .... I am not in extreme pain, but I am essentially non-functional.  Oh I can do the basic stuff even and including cooking dinner, but that's about as high level a task as I can handle right now.

the blues

In Feb., I had pneumonia, and it took me, I think, at least 2 or 3 weeks to figure out that I was in fact sick.  I came back from Mexico almost 2 weeks ago and I was convinced I had picked up an intestinal bug due to a variety of symptoms.  A visit to the doctor yielded a script for Cipro plus a nice little kit for a stool sample.  I took the Cipro, finished the prescription only to find out I wasn't, in fact, "sick."  Lab findings were negative.


What's normal?

The point here is that at least for me, it is often very difficult to differentiate symptoms of chronic daily headache or chronic migraine, prodrome, postdrome, etc. from hundreds of other possibilities.  I have had this very chronic problem so long, I have lost my healthy baseline.  Is this just normal fatigue?  After all, I'm 66 years old.  Can I just not think or motivate myself to "move" anymore because I'm either heading into a headache or getting over one?  Am I just unaccustomed to the heat (Mexico)?  Am I depressed?  Do I have something else wrong with me?  How would I know?

How would I know?

Here's my own personal favorite, "God! You just must be lazy"  What is wrong with you?  Just get over it and get a hump on it."  Subscribing to the "just get on with it" approach today, I made it through a one hour English tutoring session with my Pakistani student in spite of nausea and a band of pain across my nose and eyes, came home, shot up (injected DHE), and then went swimming at the local pool and stopped by to pick up a summer shorty wetsuit at REI before heading home to write this column.  I don't have a headache but I'm still drowsy and stupid.  Who knows what dinner will actually be - or when.  My standards have slipped in the last few months, years.

Sorting it all out

This morning my husband, who is thinking more clearly than I am right now, looked up one of my preventative meds on the web and pointed out that a cardinal side effect is drowsiness.  There it is:
Dizziness, drowsiness, and nausea may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly.
Now, I carefully read about the side effects of every new medication I take, but this somehow escaped me, or (certainly possible), I forgot. 

Also, we change.  I tolerated one medication for quite a while, went off of it and then back on a year or two later, only to discover intolerable side effects that didn't occur the first time around.  
Sometimes waiting a week or two is a good option.  Patterns of symptoms become more apparent or the malaise lifts and you just begin to feel a little better.  Some piece of peace re-enters your soul.  But sometimes, this sort of symptom suck is like an undertow, and you can find yourself at sea without your surfboard.



Then it's time for some outside input:  a walk in the park, a swim in the lake, a trip to the south shore of Lake Winna-Bango or even a visit to your, hopefully, trusted headache specialist.

  

Wednesday, May 29, 2013

State of headache care in America

Still Waiting


We are all still waiting for medical research to generate, if not a cure, at least improved prevention and treatment of serious headache disorders.  And waiting.  Below is a link to an important article that explains why headache care is a low priority and what needs to happen to end the waiting game.  It is so important, I wanted to repost it here.

Headache Testimony in Congress



The article below was published on the web site of Pacific Rim Headache Center where I receive excellant care by founder Mike Jones, MPAS-C.  It was originally a report of Congress in Feb., 2012.  If you want to know what's going on in the world of medicine and funding with regard to headache care, read this report.


Lagniappe:  The Impact of Heacache Disorders in America
by  Robert E. Shapiro, MD, PhD